6.) Bag Life Begins-after first surgery

And then it’s my first appointment meeting the new surgeon. Dr. 4 1/2 stars whom my neighbor highly recommended. Despite these promising signs, I’m still apprehensive. My luck with surgeons so far is 0-1.

His office is right across from one of the city hospitals. When I walk in, the waiting room is small…and empty. That alone amazes me because it seems like every medical appointment I’ve ever had, the waiting rooms are full. Miracle #2 occurs when they call me in at the correct appointment time and actually see me-I don’t have to then wait in the exam room- aka the second waiting room-for very long at all. The surgeon walks in and I get up politely to shake his hand. He waves me back down with “You don’t have to get up for me. I’m not THAT important.” Wow. I instantly like him.

We go over my whole story again-the Reader’s Digest version-and I tell him that my neighbor recommended him to me. I’m surprised that he actually remembers him, and not just the fake blow off people give when they can’t quite remember who it was; he goes into detail about my neighbor’s experience, how he had the symptoms pretty badly and waited a long time-over a year-before he finally decided to do something about it. Said he heard he’s doing well now and back to work-remembers what he did for a living-for a while now. Wow. I’m impressed.

I have so many questions-I’m like a dog wagging its tail because someone is finally paying attention to it. He is the only one besides the visiting nurse that actually took the time to answer me and didn’t look as though they wanted to leave the room before I even opened my mouth. No, when he asked-do you have any questions? he really meant it. He surprises me by going over to the exam table and drawing a diagram of the colon on the paper. He gestures at it and explains how the colon works, where mine was removed, and how it comes out now into the stoma. I’m staring at it like it’s the most fascinating thing I’ve ever heard.

He shows no signs of being bored or needing to see his next patient. He asks how I’m doing so far and if I’m having any issues. Then he tells me I’ll need to schedule a colonoscopy. Ugh. Dr. Nobedsidemanner had said that too and I’d never done it because I knew I wasn’t going to choose him to do my surgery. Thought I’d get out of that one, but no, new surgeon explains that he needs to see more of the diverticulitis and where it’s located. But they are just static pictures, he goes on to explain, it won’t truly show the extent of the divertic, but will confirm that it’s there and give him a better idea of how much colon he will need to remove. He explains the whole procedure in detail so I don’t dread it as much. You’re knocked out for it and what they give you, you wake right back up with no memory of it and no pain, and you’re not even sleepy. Unlike the other surgeon, hIs sequeway about cancer is not so blunt-he just says they check for polyps and any other issues and take care of them at the same time if they find any. I ask him where is best to schedule the colonoscopy and he says anywhere is fine, that this area has a lot of those places. Maybe too many, he adds.

“So this CAN be reversed?” I must have asked this in a dozen different ways in the course of my treatment with him but he is never annoyed. The answer is an unequivocal YES.

“What are the chances that you can’t do it?” I persist. He has to feel my desperation.

“0” he responds confidently.

When I leave the office, I feel like dancing. It occurs to me how weird to be ecstatic about a doctor appointment. Especially one that ends in knowing you have to have a colonoscopy. I immediately text my husband, who could not come this time, how great this guy is, how non-pricklike. Something positive for a change.

When I see my neighbors later they ask how it went. I hate to admit she was right, because she’s usually such an annoying know it all, but I’m too happy about the results and I tell her he was great-very humble, personable. She nods knowingly. I don’t care, I’m just glad for once.

COLONOSCOPY

I do some online research about colonoscopies and diverticulitis-for the first time during all this. I also ask a lot of questions on Inspire.com from those who’ve been there. I don’t want to be afraid, I just want to be prepared. Colonoscopies are not exactly something people look forward to-and in fact, put off getting them. They have a bad rap for sure. Now comes the first time that nurse friends I know start warning me: “Oh, you are going to hate the prep work!” in the same tone of voice that women who’ve had children use with those who are pregnant. Labor horror stories.  One of them also flat out asks me “How do you know it’s going to be reversible?” When I happily tell her that this surgeon said so, she goes on, “How can he say that though when he’s never examined you? He shouldn’t have told you there was 0 chance.” Pop! There goes my bubble-burst. Later I run into this kind of conversation, these kinds of people; they work in the medical field, therefore they know it all. Never mind they haven’t examined you either and aren’t surgeons with this experience-they’re nurses-or OTs. Maybe they don’t mean to, but they already have the neutral, jaded view, treating patients like robots. One person tells me: “You’ll be sitting on the toilet with a book all day!” and I say with a smile “Oh no I won’t!” Nope, no such luxury for me: it takes two hands to deal with my faux butt. But at least I won’t have to worry about the burning sensation that they warn me about either.

As always, though, the members of Inspire.com make it sound not so bad after all. They do agree the prep is worse than the actual procedure, but not because it’s painful, just that the procedure you don’t even feel or remember. I’m told to bring a spare bag because they will remove yours to do it, and the staff there don’t always know how to apply colostomy bags.

There is an additional appointment with the facility that does the procedure; you don’t just make the appointment for the colonoscopy and go in the same day. They want to go over your health history, explain what will happen, and answer any questions you have. I still have a little bit of dread going-especially to two appointments; I just want this over with-but as soon as I get there, like with the surgeon, I get “good vibes”. The nurse who sees me-you can tell that she actually cares when she asks about your issues, and wants to answer your questions. Either that or she fakes it really well. Yet another person that I get to tell my dramatic divertic/burst colon story-surprise!~to who is shocked.

Oddly enough, just as soon as I get out to the car and start the radio, a commerical comes on. It’s exactly at the part that says “Worried about getting a colonoscopy? You should be more worried about getting cancer!” and goes on to have people talk about how they were afraid for whatever reason to get one and then wished later that they had been checked out earlier. It gives me goosebumps; if that is not God, I don’t know what is. Combined with the positive appointment, I feel more relieved.

They give me a list of products to get at the drug store & instructions on the prep. This is all new to me and I look over the list frequently, trying to get into my head what I’m going to have to do and when.  From what I’m told on Inspire.com, some doctors have the prep going all day, just one day, so that you have the evening to recover/be done with drinking the laxative & emptying yourself. Mine, though, has it divided into 2 days.  Two separate cocktails. Nothing to eat after midnight the day before. Then, next day, just liquids. At 2pm, I take a Dulcolax. Then 2 hours later I start a Gatorade/Miralax mixture. Then AT 4AM I have to wake up and take the second mixture.

I take the Dulcolax and then bravely go outside to lay on the hammock next to the pool. Brave or stupid? But I figure…if I have to suffer with starving myself and crapping all day, may as well get something good out of it. I’ll get a tan while I’m waiting. For it to work. And I can run inside if necessary, I tell myself.

The 2 hours pass…I’m waiting…but nothing happens. I start my Gatorade cocktail-I put it in a huge opague water bottle so I didn’t have to look at what it was. And used a straw. I could trick myself into thinking it was something tasty. I sat out on the front porch talking to my husband & being amazed that nothing had happened yet. What did I expect? An explosion? Trumpets to sound?

But not long after that, it begins. And continues throughtout the day. Back and forth to the bathroom every 10 minutes or so. It gets to be monotonous. I try to do other things in between to take my mind off it, but they were right-you can’t go too far from a bathroom. I’m out watering the plants and then…oops, gotta go! It’s annoying, but I was told to expect it, so I just go with it. It doesn’t take long before the output is pretty much the input: yellow Gatorade. I wonder when it’s going to stop. Isn’t it cleaned out enough? I can see what they mean about the burning butt…and for once I’m glad to have the bag.

For a while I think, this isn’t so bad…annoying yeah, but…no burning butt, it’s not painful…I’m sitting out on the front porch enjoying the summer evening…and then…my husband makes a pizza…and brings it out to eat right next to me! And the hunger pains start. I have never been so hungry for a frozen pizza in my life! I tell him how rude he is and he doesn’t get it. “It’s only for a day. You’ll get to eat again tomorrow” he shrugs. I want to punch him in the throat! I try to distract myself by reading or doing something else, but by the end of the night I’m ready to gnaw my own arm off.

I finish the first 32oz mixture. Already I hate Gatorade. I’m tired of drinking it and tired of seeing it pour right back out of me. I finally get to sleep, but then my alarm goes off at 4am. The water bottle full of mix #2 is waiting. I am so tired of it by this point, so sick of the sweet, thick, snot-like texture… and I think…what if I just drank it faster this time & got it over with? The instructions don’t say how much to drink and how fast, just what time of day to drink it. I’m 1/2 asleep, I can see the moon out the bedroom window as I’m sipping this nasty shit again. Then I think, “Screw it!” and start gulping it. Get it over with.

It doesn’t take long for me to realize…bad decision! My bed is already close to the bathroom, but at this point I’m getting up so often to empty the pouch, and now I’m hit with the urge to vomit. What made me think I could chug this crap? Oh God no, don’t let me throw up! Ugh, this is bad enough! I force myself to keep it down and end up taking my blanket and laying next to the toilet for the rest of the night. My cats come in and sniff me, curious. I’m getting flashbacks of “worshipping the porcelain God” from college. But despite this torment… a fierce spirit comes through. I start telling myself what I’ll eat when this is all over with. I am going to eat a whole pizza! Whatever I want. I’ll binge. It’ll be my reward. I imagine what I’ll put on the pizza as I’m up yet again…emptying the bag. Dammit, you won’t get me down, you bastard!

By later morning I feel fine, no more nausea. It stayed down. My husband comes in before work and does a double take at me still laying on the bathroom floor, but it doesn’t take him long to understand. He wishes me luck at my appointment. I know he knows I’ve been going through a lot, but what can he say? He can’t change it. He sympathizes but at the same time, he is used to me sucking it up, not complaining about pain, pushing through it, so he knows I’ll do it again. And it’s true-it’s nice to have a shoulder sometimes, but the best thing for me is to be told I can do it and just keep going. I would never be comfortable as the star of a pity party. I would have never made it this far if I’d been stuck in that.

My friend who studied to be a nurse comes to pick me up because I was told because of the sedation I shouldn’t drive home afterwards, even though I’ll feel fine. I hate asking for help, but I appreciate it. I’m learning to accept it if it’s offered. That’s different for me.

When I get there, they check me in pretty quickly and get me set up in a little pre op kinda room. The anesthesiologist comes in and introduces himself as the bartender and asks “What can I get you?” When I reply “How about a Jameson on the rocks?” he stops, considers, and says “Oohh…”  I like this place already & I feel like I’m in good hands. He tells me, like the surgeon did, that the drugs he’s going to give me will make me feel like I just went to sleep and woke back up-no nausea, no memory. Sounds good to me!

And he’s right…when I wake up, I’m back where I started-in the pre op room-as if nothing happened. Amazing. Whatever the drug was, I wish I had some at home! One thing the Inspire.com people told me was correct-and I’m so glad I listened to them-the nurses don’t know how to apply a new bag. I’m covered with a plastic bag. The nurse is impressed that I brought my own and apologizes they don’t have any. She does hand me something though and asks if that will work temporarily. I look: it’s a urostomy. I’m proud of myself for recognizing what it is and say no, won’t work, sorry. It reminds me of the inside of one of those boxed wines, with the little twisty spout at the bottom. Instead, I lay on the gurney and expertly apply my fresh new bag. I’m proud of myself again! What aplomb, right? In the middle of a medical center.

When I walk back into the waiting room, I announce to the patients, “PIece of cake!” and go back home to eat that pizza!

LEAKS

Of course not all days are as good as that. That’s what makes me appreciate them more, in this new ostomy world of mine. About 1/2 through my experience, I start having the dreaded leaks. Up until now, I’d changed the bag every 3-5 days and the flange about once a week, sometimes sooner. But other than it being annoying, I don’t have any major issues. Until now.

I’m going about my day…and suddenly I feel something on my skin. It always start with an itching. I check the bag, it’s on and closed. I’m so parnanoid throughout this whole experience, always cleaning up after myself, checking the bag, the ever present body spray with me just in case. Every now & then I ask my family if they smell anything-I know they’d be honest-and they never do. We live in farm country-that country air-and every time I smell something, my first thought is “is it me?” I don’t know whether to laugh at that or not.

So the flange is ok, but then I keep itching. Go into the bathroom and sure enough, its leaking. Right from the seal connecting the bag to the flange. I check for holes, nothing. Think, what did I eat? Anything that would’ve caused this? Is it not stuck enough to my skin? I take it off in the bathroom at work & it’s dirty all over the bottom. It pisses me off because every morning I empty it. It’s full. Then an hour later, again. Everything is fine then. Why does it wait until I’m at work to do this?

At first it’s every 3 days, then it starts going down to every 2, then it’s EVERY day!

Every time I change it, I look, examine it, trying to gather clues as to what went wrong. Did I not use enough adhesive wipes? Were there gaps in the flange sticky part? Was my skin dry enough? I ask the Inspire.com people for advice & get a ton of it-mostly explaining the process of applying the flange and bag. The steps to take. I take all of their advice, carefully do them in the correct steps. Doesn’t matter. Now they only last one day. I get to dread it, because I know like clockwork. I’ve have that same leak again in 3 days, 2 days.

Now I regress a little-back to the beginning after the first surgery. Stressed out and crying to my husband. He sympathizes with me and keeps telling me it’s only temporary. I know that, but…

Finally after nothing else works. I text the visiting nurse. Although my insurance only paid for 3 visits, she told me that I can get a hold of her anytime; she is not going to turn me away and tell me I’m not her patient anymore. She knows my frustration and volunteers to come over one Saturday morning and check it out for me. Gratis. Not reported to anyone. Wow.

This time I’m not embarrassed about going into the bathroom. I take the bag off and explain to her where it’s leaking. She measures the stoma-I realized they changed sizes but not shapes-and she confirms for me that it has shrunk since she was last there and that it is more oval now. She applies a new bag, going over each process step by step, and shows me how to cut the flange hole in a more oval shape. I’m so grateful and can’t believe she did this on her own time!

24 hours later…it leaks again…same spot

I’m past the frustration at this point. Now I’m determined to defeat this thing. I change the bag before it leaks-hah!-and curse it as I’m doing so-“Hah you bitch, you won’t get me!” Crazy, I know, but it makes me feel better. I have my little go bag ready at work, all stocked up and sitting on the counter. I always grab it and use the handicapped stall for more room. Check out the bag just in case. I will beat you! I think. Eventually I get so good at emergency bag changes that I can do it faster than most people going to the bathroom in there with me. I laugh when I think, oh if only they knew what I’m doing in here! Sick, colostomy humour!

Finally I’m told about WOCN. In all this time, I never knew about them, what they were and what they did. Someone on Inspire.com mentions contacting one, so I ask my PCP for a reference. There’s one at the same place where I got my colonoscopy so I make an appointment.

Another golden moment: as soon as I walk into the office, I get those good vibes again. Not only is the receptionist friendly, but even the people waiting are in good moods. I notice the office is called Wound Care and Hyperbaric Medicine. It’s the first time it occurs to me-I have a wound?

This WOCN-I like her immediately. She listens as I vent about all the leaking issues. When I apologize for taking so much time she tells me not to worry about it because she blocked off a whole hour for me whether I needed it or not. Another instance of someone who asks how I’m feeling-and acts if they really want to hear it. She tells me to lay down on the exam table. This is the first person in all of this, besides the people who did the colonoscopy-who actually looks at the stoma. I feel like I have to apologize for the smell when she removes the bag, but it doesn’t faze her-this is what she does for a living. One glance and she knows what the problem is: “You need a convex wafer” she announces. And then proceeds to tell me she has the bags and wafers right there for me. She opens a huge cupboard stocked full of all different brands, and chooses Hollister for me. I have to laugh, thinking of the teen clothing store. Now I’m actually wearing Hollister-hah!

I cannot believe it: all the weeks of stress with the leaking bags…solved in less than 5 minutes. Incredible.

She takes a lot of time with me, explaining how to apply them, how to reorder them. Tells me about how she got into becoming a WOCN. When I leave I ask if I can have the office number & her name in case I have any questions. She gladly gives it to me. As I’m leaving, I tell the receptionist to please pass on my gratitude to whomever her supervisor is; she did an excellent job. I end up doing the same thing for the visiting nurse; I believe in paying it forward.

From that day on…no more leaks. Regular people cannot imagine the peace of mind that gives me. Those of us in the colostomy world understand.

Advertisements

5.) Bag Life Begins-after first surgery Part 3

After about 2 weeks the pity party for me stops. I’m old news now. My family treats me the same as usual and the calls, cards, and visits taper off. That’s fine with me though; I never liked being the center of attention anyway and I’m not used to being spoiled. It’s more helpful to me to have to deal with it on my own without the pity.

I try to get out & do as much as I usually did, to get used to being in the “real world” again. The one that’s outside of my head. If I stay there too long, I’ll be stuck. So, I start going to the grocery store, market, things like that. Once we go to visit a friend who just had a heart attack. We call each other “brother” and “sister” and now we have our shared medical dramas in common. His wife sees me walking up and says “You can’t even tell.” That, and the casual way in which she says it, not grossed out, makes me feel better. Turns out one of her relatives had a colostomy so she knows all about it. You begin to learn that there are more people out there like you than you thought-and no one would ever know it.

I had made the remark to the surgeon “Guess my swimsuit days are over!” and he gave me the same blank expression: “Why?” Obviously he didn’t think I was as funny as I did. He told me I could swim if I wanted, acted like why would I think I couldn’t? Uh…maybe because I have this plastic bag of shit attached to me? Not exactly what other people want to see when they’re in a pool. The surgeon tells me there are special bathing suits you can get that hide the colostomy. Hmm, like the special lingerie? No thanks. I can imagine how much those cost, and I’m not going out of my way to buy something that I’ll only use once. I don’t intend to need it forever. My husband is casual & jokes that’s what chlorine is for, but I still don’t swim. I don’t feel comfortable doing it. Just seems wrong. I spend a lot of my time beside the pool, not in it. I tell myself that will be my reward when I finally get the reversal surgery. I even buy myself a sea horse swimming noodle as incentive and tell myself I won’t use it until I can get in the pool bag free.

Until then, I spend a lot of time laying on my hammock in the sun, trying my hardest to “take it easy”. I can’t stand being still and I don’t like TV. I want to be up and about, like normal, whatever normal is… I worry briefly about the bag getting too hot-do I smell like a dirty diaper? Will it get too loose and come off? But then I think…don’t worry about it…enjoy the down time. You deserve it! You went through a lot. You worked for your company almost 20 years…they’ll be fine without you. I’m used to waking  up,  seeing what needs cleaned, doing the chores, picking up. Now… someone else can do it. Or it just won’t get done. Take your time to heal. It’s a little difficult for me to adjust my mindset, but I do it.

Our neighbors next door are out one night, watching me as I help my husband (minimally) weed our garden. The lady calls over “You better not be pushing yourself! Steve was off work for a while.” Then I remember: Oh yeah, he had divertic too! Didn’t get a bag, but had the surgery. I perk up with interest; this is the first person I actually knew that kinda went through what I did. He comes out too and starts asking me all kinds of questions: How are you? How much did you have taken out? Did you get a surgeon consult yet?

I tell them I think the first surgeon said only 4 inches? And then I tell them about my experience with Dr. Nobedsidemanner. Both of them are shocked and immediately jump in with “Oh hell no-that’s NOT the way it’s supposed to be. You have to call MY surgeon. He’s the greatest!” and on & on about how wonderful this  doctor is. My head’s in a whirl; what do I know about gastro experts? Exactly zilch. I depended on my PCP to tell me. Even though I had the bad experience with this one, I figured, whatever, it’s not personal, I just need to get the surgery done. Oh no, my neighbors are both telling me, give him a call. You don’t need to put up with that.

Then I think. Then it comes in a flash to me: I have a choice! It’s MY right, MY body, I’m the consumer after all. If for whatever reason I’m not comfortable with this guy, I’m not obliged to stick with him. It’s not personal, right? She finishes off telling me all the stuff I shouldn’t be eating after I had divertic: tomatoes, spicy foods, nuts, seeds, fruit with skins..oh no, you ate a bean? Oh no can’t do that? Blueberries? Oh shame! You’re going to pay for that. That’s a no no! I try to tell her that the visiting nurse said those were sorta old wives tales but she’s the type who likes  to brag about what she knows…she doesn’t listen to me. The guy starts telling me that he actually had divertic for years and it took him that long to make the decision to have the surgery. Oh my, it was bad! His wife butts in. A lot of pain! They took 10 inches of his colon out! I’m shuddering  imagining it, but then I think…if he had 10 out & was OK…surely I’ll be fine with only 4 out?

My husband later looks both surgeons up on some kind of rating system. Dr. Wonderful gets 4 ½ stars, Dr. #1 only 2. Ok, done deal. I call my PCP back & ask if they can give me a second opinion with the new guy. I get emboldened & tell them of my experience with the first surgeon. “He was a jerk!” I declare. I know they won’t do anything about it, but it feels good to be able to make my own choice.

I end up getting an appointment set up for the next week.

As people know what happened to me…I slowly find others who’ve had similar experiences. When my aunt comes to visit one time, she reminds me that my great uncle has a colostomy. I’d forgotten about that; he had cancer. His is permanent. She tells me that he actually had to show the nurses in the nursing home how to change it. Hmm, I can almost relate to that! She told him about me & he remarked that he couldn’t believe it because I was “too young to have a colostomy”.  There’s that crappy luck of mine again!

Then, another neighbor comes knocking one night. I’m guessing she either got my big story on Facebook or heard from the other neighbor. She apologizes for being personal and says if I don’t want to talk about it, I don’t have to. I shrug; at this point, why not? It’s all in the open anymore. So she proceeds to tell me her story about having Crohns. How many times a day she used to go to the bathroom. Hmmm… So those commercials are right. She gets pretty graphic about her experience. But she seems to mean well so I sit there politely. Gives me lots of advice, asked for or not. Then she says “And just to let you know, it IS possible to be intimate”. What? I can feel myself blushing. The last thing on my mind on this point. She starts to tell me stuff about wearing scarves around your waist and… you get the drift. I file that in my “later” cabinet in my head. Then she starts telling me about HER Dr. Wonderful. I tell her that the other neighbor already gave me his doctor’s name & I have an appointment next week.  Oh but no, you HAVE to see MY surgeon, he walks on water…etc.  I listen politely and stick to the appointment with mine. I appreciate her advice, but…I’m not going through this all over again. If the second one is a jerk too, then maybe, but… it’s complicated enough as it is. I tell her thanks as she leaves.

My daughter gives me a knowing look after she’s gone. “She was more into talking about herself than caring about you!” She sniffs.

And that’s another thing I notice…those people that DO have a similar experience, even remotely, or are in any way involved in the medical field…feel compelled to offer their opinions whether you want them or not. Like pregnant women, they enjoy watching you cringe as they tell their horror stories…most of which is never going to happen to you. Some people genuinely want to help or sympathize with you. Some just like hearing themselves talk.  You have to take it all with a grain of salt. If you remember anything about what I’m writing, I hope you remember that most of all.

I hear all sorts of  stories through the people on Inspire.com ostomy site. I get to learn terms only people like us could know, like “blow outs”. Seems too like almost everyone nicknames their stomas. That’s just a bit too weird for me. I understand why they’re doing it, and to each his own, but…I don’t intend to become that attached to a body part that is soon going back in where it belongs, so…I never give mine a name. It’s just ‘the thing’.

They told me to watch what I eat to see how it affects me, and I have my first negative eating experience after I eat vegetarian chili. No, it wasn’t  the spice that did it, it wasn’t hot; it was the corn that I didn’t even realize was in it. And that was one of the foods that my helpful neighbor had warned me about!  I didn’t even realize that was what it was until I woke up in the morning afterwards and started having stomach pains.

Oh no, not this again…I was thinking…of course every pain gave me flashbacks of my turnpike trip. How could I know if it were the same thing over again? Was it possible even with the part of the colon removed? I can’t fully describe the pain; it was like a really bad stomach ache, something I just knew wasn’t right. I debated-who would I call at this point? The PCP? I didn’t have a surgeon yet. And I couldn’t call the first one.  The visiting nurse had given me her cell # and told me to get a hold of her anytime I wanted. I did have 2 visits left, but she said it didn’t matter if I had any ?s in between.

So I text her & tell her my symptoms. My husband & I were about to go out on a drive. It’s early & I don’t want to go anywhere if something’s going to happen, even with my go bag. Too early to call a hospital. I don’t know enough yet to know if it’s normal, something to be alarmed about or not. We end up texting back & forth, long messages, and she answers right away. She asks what I ate & I tell her the chili had corn in it. A ha, that’s probably it! Wait till it processes, take some TUMS or Gas X, you’ll be fine. And sure enough, given time, that’s exactly what happens.

That’s another thing…only ostomates are going to know…or think about…I know I certainly didn’t care or notice before: some things come out the same way they go in. You get to become real intimate with your body, like it or not. I never would have imagined it in the beginning, but eventually I can empty my bag and look right at it without even thinking about what I’m really doing. I usually distract myself singing songs in my head. Sometimes I think random thoughts like…It reminds me of one of those icing packets you have to squeeze out.  I wonder if they make squeegees for these things? As much as you try, you never can quite seem to get it completely empty. Whatever you eat affects your bowel. I ate a bunch of red velvet cookies & yep, the “output” was pink…for a couple days. At first when I saw the reddish mark on the flange, I thought I was bleeding. Then I laughed when I remembered what I’d eaten. At times I’m changing a bag or cleaning it and I’m actually thinking of what I’m going to have for lunch. I’m like one of those medical examiners! I think; the guy who’s eating a donut while he’s doing an autopsy. Or eating a hotdog at a crime scene. How far I’ve come!

4.) Bag Life Begins –after first surgery Part 2

It takes a little back and forth calling, but finally I manage to connect with the visiting nurse and arrange for her first visit. Again, this is new territory for me; I thought visiting nurses were for old people. Or people with deathly illnesses. I guess it still hasn’t hit me that I had an illness and a serious surgery.

When she comes to the door, my husband and daughter scatter. It might be nice for them to know a bit about what’s going on, but they prefer to remain ignorant. Oh well. Guess I gotta own this. Big girl time.

She’s dressed like a regular person-no scrubs or uniform-and brings a younger girl whom she says is in training. As they make themselves comfortable on the couch, I look around and see stray socks. Cat hair. Probably dishes in the sink. Geez, I should’ve cleaned up better. Or maybe I’m paranoid. Probably they don’t even notice or care.

She explains how visiting nurses work-my insurance covers three visits-and gives me a ton of paperwork to complete. She also has supplies with her. Then she says “Well, let’s take a look!”

I’m thinking of protocol here…hmm…where do I go to expose my body organs to strangers? Where would be appropriate? Certainly not here on the couch. So I suggest the half bath downstairs. She directs me to bring some paper towels. She seems to have everything else. So I go in…sit on the closed toilet lid…awkwardly…and…reveal myself. At least that part of me. The trainee is standing there with a polite interested semi smile on her face. At first I feel like an idiot, but then it occurs to me: this is where I’m at now. Humbled. How can I have any pride left after what I’ve been through so far? And these people are professionals. They’ve seen it all.

It’s weird to wonder how much skin to show. Here I am, in my own bathroom, with my pants & some of my underwear down. Of course the area is dirty. Of course it smells bad. The nurse’s face is expressionless. Not grossed out. Not fazed at all. Then she says it: “You have a nice stoma”.

I look at her. Are you kidding me? But she’s not. I can’t help it, I crack up laughing. “Really?!”’ ‘I bet you say that to everyone’ fights to come out of my mouth next. “Do I?” How  would I know and what the hell constitutes a ‘nice’ stoma? The whole thing is hilarious to me. She explains that a normal one should be slightly pinkish red. They are different shapes. (Oh really?) Mine is round & sticks out. She tells me some don’t. Some are oval. It looks healthy. No swelling. No bleeding. Then she notices the marks from the surgery. “He did it laparoscopically? Wow.” She’s impressed. Apparently that isn’t normal procedure. Especially for an emergency and especially when done in God’s Armpit, USA, hospital.

I’m mentally shrugging at everything she says. As if I’m an expert in the matter. I’ll take her word for it.

She explains how to clean the stoma, how to apply the flange (aka ‘sticky thing’) and the bag. Then, most importantly, she makes me do it myself. I feel funny doing it with someone watching, but at the same time I’m glad; I know this is my responsibility & I need to make sure I’m doing it right. As I’m cleaning it off, she laughs at how I delicately dab at the thing. The nasty. The stoma. “You are so dainty with that! It doesn’t have any nerve endings you know. You won’t hurt it.” Really? But it seems like…it’s so gross looking…I feel like I might do something wrong to it? Nope.

I learn best by watching someone & then trying myself. I check with her step by step to make sure I’m doing it OK. And yay, I do it.

She explains to me that she can order the supplies for me. I didn’t even know there were choices-different types, colors, brands of bags. Now I’m excited, then can’t believe I’m excited about something so lame. You mean I don’t have to wear this clear bag? I don’t have to see this (literally) crap? Nope. “I want tan ones then” I say definitively. No problem. She checks that off on her list and tells me the first delivery will come in the mail, right to my front door. Then I can reorder them myself. Insurance pays for 100%.

The nurse just exudes knowledge. This is the first person in my experience so far who knows what they’re talking about. Her knowledge gives me comfort. I hit her with a barrage of questions that she answers quickly and simply. Most importantly “How long do I have to wear this thing?” She tells me that typical time is from 8-12 weeks. Some longer. This is what the nurses in the hospital tell me. I do the math: 2-3 months. A mixture of happy-only 3 months!-and depressed-3 months?

She hears my whole story again & says “It’ll definitely be reversed” with confidence. That gives me encouragement. Then I start asking her about what can I eat, what stuff should I be doing and not doing-as I haven’t had much instruction.

She tells me that they used to think that divertic was caused by eating seeds and things with skins, but now they think that’s not completely true. You can eat anything, it affects each person differently. Just watch after you eat it to see how your body reacts.

Probably wouldn’t lift anything over 10 pounds. And don’t drive if you’re taking the meds. As far as exercise, walking is good, walking is healing. Can I jog like I used to? Sure. Take it easy. Give it a bit of time though. Do I need to wear a special belt or anything? Nope. And your bag type doesn’t have a belt anyway.

When I tell her I’ve been taking what my Air Force dad used to call “T&A baths”, sitting on the edge of the tub, she asks “Why?” with surprise.

“Well…because the nurse at the hospital told me not to get the bag wet…” I begin, somehow knowing this is wrong before it even comes all the way out of my mouth.

The nurse stares at me. “It’s plastic.” She says slowly, her meaning clear-plastic can get wet. “The wound is not exposed” she continues. “And the heat of the shower steam actually makes the flange adhere more.”

I stare back in disbelief. Her simple statement means I can take a REAL shower. I thought I’d have to do the T&A thing for…the next few months?

When I tell her that I’m wearing the baggy t-shirts & big scrub pants because I’m afraid to bother the bag, she again asks “Why? Do you normally wear really tight clothes?” Well, no… Then you can wear whatever you normally wear. It won’t hurt the bag. It’s not going to break it.

REAL shower. REAL clothes.

And this isn’t forever.

First it was the PCP nurse, now it’s the visiting nurse. 2 people I’ve encountered so far that are making this journey easier. Thank God.

I mark this as when I start to have a shift in attitude. Understanding more about what happened to me and what will happen, that I can handle taking care of it myself, and that it won’t be forever are great helps psychologically. I start to sleep better. I luxuriate in taking showers, the feeling of freedom of taking the appliance off first, then the freshness afterwards and a new clean bag. The nurse had told me too that I could either take the bag off during a shower and put a new one on after, or just shower with it on. I alternate doing both, depending on how long I’ve been wearing the bag. She told me the bags are normally changed every 3-5 days and the flange every 7 days. And I can take off the bag, rinse and clean it out, let it dry while I put a new bag on. Then reuse it later.

The nurse also casually mentions that I should carry a “go bag” with me wherever I go out-change of clothes, extra bags, cleaning supplies, etc. I have a little flashback of panic; I’d never even thought of that & I already went out with my husband to that toy show. I shudder to think what would happen if I had an accident.

I still avoid looking down at the stoma while I’m in the shower. But I’m getting there.

When my first package comes, there’s a doorbell ring and boom-it’s there. I never get anything in the mail, that’s usually my husband’s deal. So I act all excited and announce, “I got a delivery!” and dance around the room. My natural sarcasm has kicked in. My husband just raises his eyebrows. He knows what it is. I open it with a flourish and say “Wow, new bags!” and “Look! Wafers! How exciting!” There’s also a little carry case full of supplies. It feels like a Colostomy Christmas.

Then I take them up to my room. I’ve created a little changing area under the bathroom sink. In a corner of it, I have bags, wafers, adhesive remover wipes, sticky wipes, stoma powder, plastic baggies to put the dirty ones in, hand sanitizer, wet wipes, scissors, marker to measure the stoma, and incense sticks with a lighter. I’m meticulous about cleaning up afterwards. Leave no trace. My husband tells me later that he appreciated that.

Eventually I get the bag thing down to a science. I have the 2 piece ConvaTec with a Velcro bottom. Each morning, light an incense stick, then unroll, empty, flush. Wipe the bag end with a wet wipe, wipe the seat with Lysol wipes. Make sure I’m rolled up and closed tight again. Put all the supplies back and empty the baggie.

I notice, over time, that I am able to look at the stoma just like it’s any other part of my body. Nothing special, nothing any different. Just something to be dealt with like anything else. But it takes time.

For changes, take off, throw in baggie. Clean stoma with paper towels & warm water. Apply adhesive remover. Apply stoma powder. Lightly. Blow off. Sometimes use hair dryer on low if I just got out of the shower. Use adhesive wipes. Put on wafer. Press down, no gaps. Attach the bag carefully. Sometimes I lay on the bathroom floor to be as flat as possible.

Then…done…on to the rest of the day. Carrying the baggie to the trash gives me flashbacks of the diaper changing days. My daughter is 16 now, long past that. I start to smell like a Diaper Genie, I think. I get paranoid about that & always carry a spray bottle of body spray in my purse and go bag.

In the first package, I see a little slip of paper advertising special underwear just for those with ostomies. Ostomates. So that’s what they’re called. I don’t want to refer to myself as that or as “having” anything. I don’t want to call it “my” disease because I don’t want to claim it. I don’t intend on having this thing forever. When I see the ad, I giggle & show it to my husband. Seriously, they have this stuff? “Discrete and comfortable” it says. That strikes me as hilarious for some reason. I wouldn’t wear fancy lingerie like that even without a bag. Don’t plan on starting now.

On the other side of the slip there is something about a website called Inspire.com. Some medical support blog type site. Usually I don’t get into that kind of thing, but the underwear has me intrigued. You mean there are other people out there like this? People who would actually buy special lingerie? I am so ignorant of this whole thing, I never knew anyone with a colostomy bag, I know nothing. Now I find out.

I go on the website and see a special section just for Ostomy Support. All kinds of categories from “feeling good about yourself”, “leaks”, “diet” and more. I read through some peoples’ stories and issues. And I learn what Crohns and colitis are. I find out some people have to wear these bags for life. Some have a choice, some don’t. Many times it’s from having cancer too. I learn the difference between a colostomy and ileostomy, and a urostomy. Wow. It’s like a whole different world. I feel stupid for being so clueless, and lucky at the same time. I could have it so much worse. Some of these people have it really bad.

I go onto the introduction page and tell my little story. Probably pathetic compared to theirs. And this starts a whole new thing-I’m open to a community that I didn’t even know existed. Now I have a third reference: first it was the PCP nurse, then the visiting nurse, now it’s strangers on a health website. They will sympathize with me, give me tips and knowledge over the next couple months that I wouldn’t have gotten from anywhere else. All from reading a little slip in a package of colostomy bags.

Gradually I start getting out & about more. I make a “go bag” like the nurse suggested and make sure it’s in my car every time.

My husband & I were into microbrews and used to go out to a few brew pubs in our area pretty regularly. He asks me one week if I want to go on our usual Thursday. Ehhh…I wonder…I still don’t have much of an appetite, even after I’m done with the antibiotics. I lost a lot of weight and people have noticed. I start to joke that I’ll tell them all about How I Did It: “The Colostomy Diet”. First, you have to get a ruptured colon. You have to have some weird undetected disease to get that way in the first place. Then, you must wear this plastic bag attached to an exposed body part, and… nah, somehow I don’t think too many people would be interested in following this diet.

I’ve also lost my appetite for beer. We have plenty of it in the house that I brought back with me from my trip. Now I look at it like bleh… no interest. What’s wrong with me? But, to get out, I agree to go. It’s a small new place and the people have gotten to know us. And thanks to my husband posting my personal stuff on Facebook, everyone knows. Oh well. When we get there, they ask how I’m feeling and can’t believe what happened. I have to tell my dramatic story once again. I get to the point where I do it in a sort of Reader’s Digest condensed version, just hitting the important, spell binding parts. I don’t like talking about myself, but I don’t want to be rude either. My husband tells them that I’ve lost my taste buds for beer, but wanted my first beer to be one of theirs. When he tells them this, they announce it’s on the house. I’m touched.

I take a sip…and it tastes…not bad, because they make good beer, but… it just doesn’t settle right. Feels like a weight in my gut. I don’t tell them this though. Instead I drink so slowly, I only drink one to I think my husband’s 3. He can’t believe it either. Me, nursing a beer? Is the world truly going to come to an end? I’m still really tired too and sit on the bar stool, wondering if anyone can notice my bag. I think of the go bag out in the truck just in case. And will I be able to deal with this thing out in a public restroom? Things you have to think about when you have a colostomy.

That taste for beer never comes back fully, by the way, even after the second surgery. I can drink it, but…it just isn’t the same. Any alcohol I drink, I don’t feel drunk. And I just don’t have the desire anymore. At first I thought it was from the antibiotics, but as time went on, the desire never fully returned. Is it something with how my guts are now? Who knows. At least I got losing weight out of it I guess. A bonus. Yay.

One thing the hospital did tell me is that I would have to find a local surgeon to do the eventual second surgery. The first surgeon confirmed it would be reversible too, just like the visiting nurse. I hold onto that during the bad days. They told me to get a referral from my PCP unless I wanted to come back there for the surgery, haha. Uh..yeah…no thanks.

I talk to the nurse at my PCP and they just give me a name of a doctor and arrange to set up the appointment. Names mean nothing to me; I don’t know any gastro docs and I trust their judgment.

Since I’m still not allowed to drive…at least I didn’t think I was…my mother in law says she’ll take me. At the last minute my husband decides to come along too.

When I get there I have to empty the bag. I’ve noticed the typical pattern is twice in the morning, when I get up,and then about an hour later. I check it all throughout the day, though, instinctively touching it, making sure it’s not visible, nothing is leaking, no one notices it. I figure it’s the perfect place to empty a bag-at the actual surgeon’s office, right?

They call me in and I’m sitting on the stool, my husband beside me, when the surgeon comes in. A somewhat tall skinny guy, short brown hair, looks to be in his early 40’s. He sits on the exam table with his fingers folded and stares at us for a moment. We stare back. Then he says, “So what’s up?”

What’s up??? And that tone of voice…so blasé, so…you’re just another patient and I’m following my script. I want to respond “What’s up?? Haven’t you read my medical records?” I stumble for words-where do I begin? Do I tell my whole story again? I’m so tired of hearing it. Does he want to know why I’m here? I mean…he should know all this. Instantly I don’t like him.

I finally manage to get out that the PCP referred me to him for the reversal surgery. The whole time I’m talking, he’s just staring at us, saying nothing. No nodding, expression of sympathy, or comments. Long pauses of silence after I’m done speaking. It’s awkward.

“So I need you to go for a colonoscopy. You can call anyone to schedule that. I need to check if there’s any cancer in there before I do the surgery so while I’m doing it I might as well go in and take care of that at the same time. “

What? Cancer? What are you saying, now I might have a disease too? Huh?

I’m too dumbfounded by the information he spits out and the manner in which he does so to ask coherent questions. He doesn’t seem like he’s too interested in answering them anyway.

“Umm…is there anything I shouldn’t be doing?” I ask. I don’t want to baby myself, but I don’t want to do anything to mess this up either. At this point even laughing or sneezing are painful.

He shrugs. “You can do whatever you did before this.”

“Should I be…driving?”

“Are you on pain meds?”

I actually cut them down from 3 a day to 1, then none, in the first week. So, no.

“Then why not.” He says in staccato tone. He looks ready to get up and leave the entire time.

After I blubber out some more stupid, to him, questions, he finishes with “So I’ll see you back in 4 weeks and we’ll schedule the surgery.” Breezy, non chalant voice.

“But don’t you…have to do more testing? Another CT scan?”

“Nope. We just schedule the surgery for 2 weeks after. Then I’ll go in and see if it’s able to be reversed or not. Or else it’s permanent. “ Ok, have a nice day. Bye. See you later. Leaves.

I am beyond stunned when I get back into the waiting room.  I try to check myself; Most surgeons think they’re God. I don’t need him to be my Face Book friend, I need him to do surgery. Ok, maybe it was just me. But my husband feels the same way; “That guy was a prick!”

I feel like total crap when I leave there. So depressed that I start to cry again later. So discouraged. Cancer? Colonoscopy? Not reversible?

Add this to the list of bad days

3.) Bag Lady Goes Home–after the first surgery

When I finally get home from the hospital, it’s after midnight. Well, at least I got to find out where the GPS was mysteriously taking me, finally: through the rest of BFE and into State College up to Harrisburg. Never took that route from Ohio in my life. It still amazes me that were it not for the GPS…and where it took me…

My daughter had the couch all set up and ready for me: covers, blankets, pillow, water bottle, even a get well flower. So thoughtful! My mother in law was there watching her while we were in the hospital. Of course she doesn’t like that-she feels at 16 that she is old enough to take care of herself and get to work, but we overrode her decision. As we stumble in the door, exhausted mentally and physically, mother in law wants to sit and chat about everything. No offense but…I’m beat! I can’t see why she doesn’t understand that and just talk to us in the morning. I am kinda rude and arrange myself to go to sleep on the couch, right in front of her.

But first…my husband bumped into the bag. I had almost, not quite, forgotten it was there. “It’s full again” he says quickly. I know it grosses him out. Oh shit (literally) I really have to deal with this! Myself. I go into the bathroom and for the first time, alone, empty it in my own house. It will be one of many, many times. How am I going to get used to this? I leave the light in the bathroom off so I don’t have to look at it. I can’t. I turn the fan on and try to distract myself mentally from what I’m doing. Detachment.

I have the bottle of Percocet they gave me-and gratefully take one before I drift off to sleep. One souvenir of my stay that I enjoyed-the meds. The pain is almost instantly gone. Or at least forgotten. That first night is the only night I actually get any sleep for a while.

Sleep….that feeling you get as you slowly drift off…I miss that. For the next several weeks, I have trouble getting to sleep, and if I do, I wake up throughout the night. I wake up too early in the morning, before anyone else, and lay there, my mind racing, my chest tight. Restless. “What am I going to do? What am I going to do?” over & over in my head.

I have no appetite. I have to force myself to eat, and when I do, I take a few bites and don’t finish anything. Food turns me off and I have no hunger pains. The only thing that makes me eat is knowing that I HAVE to-to stay healthy & have energy. And, to take the antibiotics. I have 1 I take 3x a day and another one once a day. All of them are huge horse pills. I gag just looking at them and it takes me several minutes to even get them down. Then I feel like throwing up. I know it’s childish but I just stare at them, dreading it, and then shiver after I finally get them down. My daughter teaches me a way to take them: Take a sip of water, swallow, take the pill, quick, then take another drink. I do that every time and she cheers me on. Each day I celebrate by holding up the bottles and showing one less pill to take. I’m pretty sure they are what’s killing my appetite. After a while, people notice I’m losing weight. I’m kinda grateful, but at the same time, it’s not pleasant not having an appetite and looking at food making you feel sick. I stock up on soft, simple, easy to eat things like apple sauce in a squeeze pouch and yogurt. Drink lots of water. No way I want to get sick and have to go back to the hospital.

I dread nights…because I know I won’t be able to sleep and then I’ll wake up and lay in a silent house. I don’t feel like doing anything I usually did-my guitar remains untouched, I have no desire to practice. I don’t want to read. I don’t feel like writing. Everything I used to love to do…I have no interest doing anymore. Every simple task is an effort. Everything on TV is boring. My mind races constantly, I can’t stand sitting still, I feel like I have to do something, but yet I don’t want to do anything. I recognize all of this as depression; I’d went through it before when my father died and I thought I was going to go out of my mind. Amazing what the mind can do to the body and vice versa. Although I know it’s “in my head”, my mind refuses to cooperate with me.

I have become someone unlike my usual self: vulnerable, weak, helpless. I hate it. The first week home, my husband is home from work too, and I start to depend on that. Though I handle the bag myself, at least he’s there. I feel like I cry to my him too much about it-crying for me at all is unusual. I wake up every morning & complain to him and ask him to help me but I know he can’t. I have to get out of this myself. I decide to fight; I am not going down that dark hole again.

When he finally goes back to work, I’m alone in the house. Can’t drive yet, can’t go anywhere. I force myself to get into a routine, I make up little schedules throughout the day and mentally check them off, congratulating myself for getting through them. They’re simple, like, get up, clean your bag, take your pill. Ok, great, you did it, now take a rest. Then, call the FMLA people back. Then call your boss. There are SO many calls back & forth from UNUM, FMLA, doctor office, work-it’s overwhelming. It takes a great effort for me to deal with these calls when my mind can’t seem to handle anything complicated lately.

In the meantime, I’m getting flowers and balloons delivered, family, work, friends… cards… it’s nice but at the same time I hate to be the center of attention. I don’t want pity.

I haven’t been close to my mom and sister for a long time, but now they’re texting me every day checking in. To be nosey or genuinely concerned, I’m not 100% sure. I’m also very independent, don’t like pity or help, but as I’m slowly realizing this really happened, and I really have to deal with it…I’m changing…if they offer, I’m going to consider it was genuine, and accept it. This is a new me thinking now.

My sister is a dental tech. She sends a bag of scrub pants over with my mom. They’re too big, but they’re baggy and comfortable & don’t bother the bag, so I start wearing them.

My mom offers to come over & clean the house while my husband & kid are at work & I let her. Though, it makes me uncomfortable watching her scrub the floor and do dishes as I’m sitting there on the couch watching. So I get up and start running the sweeper. She yells at me.

At this early stage, I still have a problem looking at the stoma. My first glance in the hospital, I saw this red thing sticking out. “It looks like the end of a hot dog!” I thought, horrified. My husband has already made it clear that he doesn’t want to deal with it, so I know I won’t be able to expect either his or my daughter’s help. I wouldn’t impose that on them anyway. But my mom asks if she can help me as I’m changing it, and I say…Ok. Very humbling. No shame. But, that’s who I am now.

I start taking it off, but I’m looking up at the ceiling, do it by feel instead of looking at it. My mom remarks “Can’t you even look at it?” and I say “No” quickly. She doesn’t question it, and isn’t bothered by it; she used to be a CNA and has seen a lot. For the first and only time, I take off the clear bag and rinse it out in the kitchen sink. Yeah, I know, gross-but it has a snake hose in it and is the quickest way to get it cleaned. Of course I scrub the sink and everything around it with bleach afterwards. When I dry and put it back on, I quickly put on the scrubs again so I don’t have to look at it. Out of sight, out of mind.

2 days after I come home, my husband is going to a toy show and asks me to ride along with him, just to get out of the house. He knows I go stir crazy fast, and thinks this will help me snap out of my funk. As he gets in the car, he just casually turns on the radio & classic rock comes on. It’s one of my favorite genres, but it’s almost like…I feel like I should be listening to elevator music, mellowing out, that I’m sick or defective in some way that I can’t even listen to my regular music. But as it goes on, it helps me in a way to realize that there’s still a real world out there and my little experience isn’t the only part of it. Life goes on. I’ll be able to listen to and enjoy my music in the same way again sometime.

We walk around the toy show…slowly…I feel like an old lady & I still can’t believe, that me, who is used to jogging, now has to ask my husband to wait until I catch up. Sometimes I hold his hand instead and feel even more like an old lady. Several times I have to stop and sit down. But that’s Ok. I’m up and out. And all the advice I got was “walk! walk! walk!” for healing. By the time we leave, I’m glad I got out-even though at first I didn’t want to. I needed it. One day at a time, one step at a time. Literally.

He’s off work for a week, and when he has to go back, I feel lost. I’m ashamed of how weak, pathetic, needy I am now. I’m wearing baggy shorts and big shirts because I think I have to, to hide the shape of the bag. I don’t bother putting on makeup and just put my hair in a pony tail because who cares? I’m already gross. Who cares what I look like anymore? And I’m sure my husband thinks I’m disgusting too. Good thing I’m already married because who would be attracted to THIS anymore? are the thoughts that are going through my head daily. I am down to ground zero, humbled and dependent.

Though…there is something inside me that is fighting the depression and those thoughts. When he leaves for work in the morning, I find myself getting into a routine. I sit on the front porch with the cats, a cup of coffee, and a devotional or bible. I become totally dependent on God now; who else is going to get me through this? Only now, after it’s all over, does it hit me: my God, I was driving on a 10 hour trip, by myself, with this pain that I didn’t know what it was…I could have DIED! The whole time I’m driving the turnpike, there is this huge hole in my colon? Only now does it scare me. I can’t believe I made it to the hospital. The odd GPS directions, “Clarion”, choosing that particular hotel that was next to the hospital…they cannot be coincidences. I’m leveled to realize that without God watching over me….

So I start each day thanking God that he saved me…for whatever purpose. I find a bible app and start a devotional on healing. Then I force myself to deal with the bag. Force myself to take the horse pills. Eat something with it. Then I take a walk. At first, it’s just up and down the sidewalk. As time goes on, it gets longer, until I’m able to walk around the town. I take my headphones with me and listen to Joyce Meyer or Joel Osteen…something to cheer me up.

In the meantime, I still can’t sleep at night. I go in a separate room so I don’t bug my husband moving around so much. I try Aleve PM…NyQuil…nothing works. Oh how I miss that blissful feeling of drifting off into sleep! I vow that I will appreciate it every night, when I finally am able again. I do deep breathing exercises and meditations. I still have anxiety each night, knowing that I won’t be able to sleep. Or if I do, I’ll wake up several times. Then I hate the daylight because there’s another day that I wonder what I’m going to do until everyone gets home. Eventually I combine Melantonin with sleeping pills. There’s a little pharmacy beside my bed for a while. Eventually, weeks later, I get to put all that away and I can sleep again. Hurray!

I called my PCP on the Monday after my return from the hospital. I don’t know where to begin, telling them my story. Yet again. Since I came home on a Friday night, i have to wait the whole weekend. When I finally do call them-another task I give myself-the nurse is shocked. Not just about the experience itself, but the care at the hospital-lack of information given, mostly. At this point, I’m still stunned, grateful to be alive, and don’t even know what is proper procedure for a hospital. I’m thinking they were just so small and this was such an emergency…plus I was so far from home. She asks if I got a visiting nurse scheduled? What’s that? I ask. She gives a long list of things I should have been given, information that should have been provided, and I don’t know what any of it is, was never told about it. She is on the phone with me for an hour, explaining in great detail what the surgery entailed, things I should and should not be doing (lifting, driving, etc.). She tells me that I’m entitled by insurance to at least 3 in home visits from a nurse. Wow, really? She also explains to me how to apply the bag, that I can take it off to clean it. She gives me the tip of rinsing it out with mouthwash when I’m done, as it’s antiseptic and also helps with the smell. I am so overwhelmed by all the knowledge she’s giving me-things she took for granted I should have already known-and so grateful that this is the first person who has actually helped me. Having a good resource and some compassion sparks a little hope in me.

2.) Bag Lady Life-first surgery

I woke up from surgery to the sound of a lady screaming.

Over and over, she screamed “Help me! Help me! Help me!” from across the hall. It went on for at least 5 minutes straight and no one went in to help her. The screams turned into moans, then went away for a while, then started up again. This lasted all day long. I drifted in and out of my haze with this as my background. It blended in with the sound of the air conditioner, and eventually soothed me into a weird kind of sleep. When a nurse came in to check on me, I mumbled, “Would someone please help that lady?” They explained that she was having some sort of mental issues, and kept doing that whether someone helped her or not. Great, I’m in a mental ward! Finally it got so annoying that I asked them to shut the door.

I remember the surgeon coming in and announcing that he’d had to do “option B”-the colostomy-rather than just being able to sew me up. I’m not surprised. It’s just my luck. He remarks with wonder that the perforation was so big that he could put his whole thumb through it, and yet again, asks didn’t I feel the pain? Uh yeah, but…I thought it was a cyst. I feel stupid saying that now. He shakes his head at my travelling story and tells me that if I had gone on the turnpike route I probably would have ended up on the side of the road or at a rest stop in not so good shape. I translate that as: “You would have died”. A cheerful thought.

I can feel the bag on me, I barely glance down at it. I don’t want to see it. The first day in the hospital is a fog, but I remember a nurse coming in to explain it to me. Or rather, tell me in so many words that she doesn’t know much about them and says she’ll bring me a video to watch.

She wheels in a metal cabinet type thing with an old TV/video combo machine built in. Puts it at the end of my bed, presses play, and leaves the room.

I’m a captive audience. I lay there as a lady comes on the screen and starts talking about colostomy bags-holding one up and using all sorts of terms like “landing zone” and “flange”. I’m horrified to look at it, and at the same time I’m irritated because it’s not even the same kind of bag I have. This one is tan and opaque; mine is smaller, a different shape, and clear. Why did they make me watch a video that is nothing like what I have? How am I supposed to learn from this? The terminology is bugging me at the same time it’s amusing me-“landing zone”-really? The lady is saying all of this so seriously. And the lady-that’s another thing-she is OLD! Has helmet hair and wearing old fashioned clothes. I’m not old! This isn’t meant for me! As the video ends, for the first time in this experience, I burst into tears.

And this is how my husband finds me. He had had to have his parents drive him up here so that he can drive me back home in my car. Walking into the hospital room after his 4 hour surprise road trip, there are tears in his eyes too. I can’t imagine what emotions went through his mind as he got my emergency text-“Oh hey, yeah, by the way I’m going into surgery-bye!” He’s probably even more shocked to see me crying. 21 years of marriage & he could count on maybe one hand the times I’ve done that-I’m just not a crier. But now…

“I’m a freak!” I sob, and I force him to look at the bag. “Look at that! It’s GROSS! I’m gross!” This little plastic bag, stuck to my body. Right now there’s only a light brownish sort of liquid, almost clear, they tell me is gases. Nasty. It disgusts me. I disgust me!  Gross. I can’t bear to look at it and I cover back up and bawl again like a baby. My husband tries to comfort me, but what can he say? He has no frame of reference for this, and he’s as dumbfounded as I am. He doesn’t want to look at it any more than I do, and doesn’t pretend otherwise.

There’s an extra bed in my room and he ends up staying with me the rest of my time there. A blessing from God, as my former composure throughout this is now completely gone. I feel weak, helpless, and at the mercy of everyone else.

I don’t know anyone who has had this happen to them and I have nothing which with to compare it. The video was no help, and I quickly learn that the hospital isn’t much help either. Gotta give them props for saving my life, and the medical personnel are nice, but…it doesn’t take long to realize that they’re out of their depth here. It’s a small hospital, in the middle of nowhere. The nurse who gave me the video to watch comes in and tries to further show me what to do with the bag, how it goes on and how to change it. She admits she doesn’t know much about them, that the person who does is not in this week.

She gives me the basics: the square thing sticks to your skin, the bag is connected to it and snaps on like a Tupperware lid. She actually says that and I add that to my list of ridiculous terminology: landing zone, flange, Tupperware lid. Uh no, there is nothing good under this lid. I listen to her, but am half tuning her out. I can’t believe that I am going to be in charge of doing this myself. I don’t want to. I know for sure my husband won’t do it. And this nurse barely knows what she’s doing. How am I going to handle this when I get home? How long do I have to wear this thing? I feel the urge to rip it off, to make it go away, but I can’t. So I try to ignore it instead. Pretend it didn’t happen.

Hard to, though, when I finally can’t stand it and beg to take a shower. That same nurse tells me in a panic “Don’t get the bag wet!” She makes me paranoid. She wraps plastic baggies around it and sticks it to me with surgical tape. I’m so weak, getting out of the bed is an effort, I have to do it in stages: roll over (slowly), feet on floor, arms on bed railing. Push with arms, do NOT use stomach muscles. I didn’t even know I used my stomach when pushing or getting up, never thought about it. I can’t help but think of it now, as any movement there is agony.

Damn, I feel like an old lady! I was used to being active, I didn’t sit around, I loved to run! And now, just sitting up is a big deal. Plus I got this bag. The medical people keep remarking on how I’m “too young” to have a colostomy, wow, how did this happen to you? Didn’t you ever have any warning signs? Any pain? The surgeon told me that it was probably caused by undetected diverticulitis. I don’t even know what that is! I’ve never even heard of it. He explains it’s usually caused by not eating enough fiber, or seeds, nuts and foods with skins getting stuck in your colon- but none of that is definitive. How could you prevent this? What did I do to cause it? I wonder. He tells me that you should get a lot of exercise, drink tons of water, eat right, eat small meals daily, get enough fiber. But I DO all of this stuff already and have for over 20 years…I’m a vegetarian! I’m nonplussed and so is he. He finally shrugs and says “Some people just have bad luck.”

And there you go.

So I get into this shower-or try to-my husband holding me up because I’m too weak, halfway out of the stall so he doesn’t get wet. Me, trying to balance on a handle inside. I can’t stand going without shaving my legs, so I angle them out to the shower walls one at a time. I look ridiculous but I’m desperate. It’s got to be world’s longest shower, but when I’m finally done, it does wonders psychologically. The first positive thing during my stay here.

The nurses check on my pain level, which starts out at about a 7-8. I have a pretty high pain threshold normally, and compare it to the kidney stones I had years ago-a 10+-so I can mostly handle it, but it’s definitely not pleasant. It’s not a stabbing, intense pain, but more like nagging…like a menstrual cramp X 10. Well, yeah, like the pains I had that got me in here in the first place. I groan inwardly…why didn’t I see a doctor sooner? I wish there had been someone with me who noticed what I looked like, how I was acting, then I could’ve gotten to a hospital sooner. Maybe. Then I tell myself…no use going that route in the mind. I can’t change anything now. “It is what it is”.

They give me Percocet which is like a dream come true. I learn to ask for it as soon as I feel the cramping sensation start across my stomach. Then it puts me out almost immediately, so I’m drifting off and on throughout the day. My husband uses that time to go out into the great metropolis that is Clarion PA. It consists of not much more than I saw when I pulled into the hotel: a few chain restaurants, gas stations, the rejected motels, and the obligatory Wal Mart. I am feeling emotional and vulnerable and miss when he leaves, but I feel bad because it has to be so boring sitting there watching me sleep, so I’m glad he gets out. He also gets REAL food-not the tasty vegetable broth and cottage cheese (ugh-looks like vomit to me) to which I’m treated. I envy him that. I would love to even have McDonalds french fries right now, but that’s not going to happen. On one outing, he comes back with a couple dozen doughnuts from a popular local bakery-he shares them with the nursing staff. They immediately fall in love with him.

As I’m waiting it out there, all the calls and texts come in-my friends, boss, family. I don’t have the energy to deal with them, I pass off the phone to my husband to reply. He actually puts an update on his FaceBook page with a picture of me prone in the hospital bed-not my finest hour. Now everyone knows. At first I’m upset, then he says…wouldn’t you rather they know what’s going on instead of guessing? What do you have to hide? You didn’t do anything wrong. It wasn’t anything you caused. And I keep telling myself that over and over until I believe it. Though it’s still embarrassing. A heart attack, car accident, breaking a bone, that’s one thing… people can and want to help you with that…but a colostomy bag? Doubtful you get many takers on that. I’m a pretty private person anyway and don’t like attention or people feeling sorry for me. But, nothing I can do about that now either.

While he’s gone one time, as the nurse is going in and out of my room, I can hear quiet music coming from the room next door. She casually tells me that the guy is in hospice and his family isn’t there yet-that he “doesn’t have long”. I’m horrified-first, that this poor guy is alone and it’s happening to him-and that she is even telling me this at all. Isn’t there something called HIPAA?

As I’m telling my husband this when he comes back, we overhear the nurses talking about the patient on the OTHER side of me-she has MRSA. Door wide open, no quarantine, more medical issues discussed right in front of me. Oh my God! We look at each other, not believing this is happening, and he says “Quick-put hand sanitizer on everything!” Wouldn’t that be the icing on the cake after what I’ve been through so far? Checked into the hospital for emergency surgery and end up next to a MRSA patient. Lovely.

That same night, a patient down the hall starts screaming, cursing, fighting with the nurses. Then we hear loud noises-he is throwing furniture at them and anyone who walks in the room. We sit there frozen. What is going on in this place? A nurse comes in to check on me and is casual about it: “Oh, it’s a man who is throwing a fit because he wants his medication.” She tells us he’s some kind of drug addict that comes in frequently, or something like that. My husband is freaking out. “Do you want me to go in there and help?” he offers. She shrugs it off and says the surgeon who worked on me is coming. More cursing and throwing things. I don’t know what happens, but eventually there is silence. Oh my God! I think again. Am I in One Flew Over the Cuckoo’s Nest? This is unreal.

To add to the surreal vibe, a lady comes by with a harp…yeah, really!…and asks if we would like her to play for us. Uh sure, we reply. What next? It’s odd, but actually very soothing. I kinda wish she would stay longer.

Each day, I’m progressing from all liquid, to clear liquid, to soft food diet. They don’t want to release me until they’re sure there are no leaks in the bowel and that it’s “processing” properly. You know what that means. Something is going to come out . I don’t even want to look at that bag after the first time I was forced to. When I go to the bathroom, I avoid it. It’s like an alien object attached to me. But as the nurses check on me, I have to look. The first time I see what looks like something out of my cat’s litter box…I’m horrified. “There’s something in it!” I shriek. The nurse explains that’s how it’s going to be at first; the way the output is formed is from what you’re eating. At first you get gasses, then liquid form, and then more solid when you start eating regular food. I don’t want to hear it, I’m totally grossed out.

On Thursday, though, 3 days after my surgery, the nurses are saying that things are progressing and that I will be discharged soon. You know how that goes-it’s a waiting game. As the day drags on, I panic-I have no idea what to do! I don’t know how to take care of this thing, I didn’t get enough time or instruction! How do I empty this again? How often do I empty it? When am I supposed to change it? How do I order new ones? Whom do I call if I have any problems? What kinds of problems might I have? What should I look for? What do I do when I get home? Do I have any restrictions on what I eat or drink, or things I can do?

I give them a barrage of questions. I’m almost in tears again. After 4 days, I’m used to this place and the people taking care of me, however unprofessionally/unskilled at times. I don’t know what I’m doing when I leave! The only answer I get is to follow up with my regular doctor when I get home. And a vague “I probably wouldn’t lift anything over 10 pounds”. That’s it.

I am freaking out! I ask the discharge nurse all of these questions again. My husband is helpless, he has no frame of reference for this either. Neither of us know anyone who has had a colostomy and it’s not like I had experience in it before. This nurse is just about as overwhelmed as I am. She goes out, comes back in the room with a box of supplies-bags and the “sticky square things” (technical term-flanges). She actually gets out the instructions and reads them…IN FRONT OF US. My husband and I look at each other: unbelievable. I feel like I’m about to go on a crying jag again.

Eventually the surgeon comes in…and says I’m clear to go. Never mind it’s 8pm and I’ve explained to them that we still have a 4 hour drive home. No mercy.

So, we pack up…colostomy supplies, chip chopped ham and all-and get in the car for our trip home. Pain, emergency surgery, screaming mental patients, MRSA, hospice patients, inept nurses reading instructions…My mind is a whirlwind…

11.) “It’s Over”-after reversal surgery/hospital stay

When I wake up, I’m already in my regular hospital room. They had told me I would be in surgery for up to 4 hours and then in recovery 1-2, but I don’t remember any of that. My first sensation is of a dry throat, which I expected and had before on other surgeries. I had told myself the first thing I would do when I woke up is grope for the bag-to make sure it was really gone-but the second sensation, pain, overtakes me, and I don’t bother. I just want to go back to sleep. In the beginning, nurses are in and out of the room all the time, checking on me, checking the IV, stopping whatever is beeping. They ask if I need anything & I keep asking for a drink, but I’m not allowed to have that yet. Eventually I’ll be allowed to have ice chips and consider that a treat.

To every person that walks in, I say “I can feel the pain-whatever this is, it’s not working.” They tell me it’s a morphine drip. It has a little button on it and I can self medicate every 15 minutes. There is no way it can over medicate, as it won’t release anything if I try it any sooner than that. I have an eye on the clock and I’m pushing every 15, and it still isn’t working. I tell them that, ask for something else, but they tell me that the other other IV pain med is Dilaudid, and I’m allergic to that. Well, not technically allergic, but I had mentioned during my first surgery, they gave me that and I felt nauseated and was scratching myself all day. They then gave me Percocet, which was like a dream-instant pain relief. I ask can’t I have that and they tell me that it’s only in pill form-and I’m not allowed to have pills yet. So, I suck it up.

Later in the day my husband and daughter come in, but I hardly notice them because it still hurts so much. Worse than the first time. I just lay there & keep saying that it hurts & the IV isn’t doing anything. It’s not like I’m up for conversation and I don’t even feel like listening to other people talking. I remember a nurse friend telling me that morphine is useless-that it’s just for cancer patients. Since I’m not exactly visitor friendly, their visit is short.

The highlight of my night is finally being allowed to have ice chips. Then water. They bring me a huge water bottle that I constantly ask to have refilled. That night is the first and only time I have the TV on, to watch the All Star (baseball) game. That’s also when the pain starts to lessen and I feel a little better.

Somewhere in my conscious, I laugh again at the thought of treating this like it’s a vacation, pretending like I’m in a hotel. But…I’m hooked up to an IV which, I learn, has fluids, antibiotics, and morphine dripping from it. I have a plastic thing on my finger that glows red. I call it my “E.T. finger”-for respiratory. I have a catheter and blood pressure cuffs around both legs. The sound they make when they alternate back and forth is somewhat soothing. For a while I have oxygen running into my nose too.

Meanwhile the IV pole seems to beep every 10 minutes. Although my door is open, the nurses don’t hear it right away. So if it’s not attended to, it beeps even louder. Then louder yet.  It’s ultra annoying. Still no one comes. I end up having to press the nurse call button almost every time. Sometimes I’m too tired to even do that and I just let it keep bleating until a nurse comes in to do some sort of check on me. That’s another laugh. Like I’m in a hotel. Right. It’s not like you can sleep, nor did I expect to. The door is open most of the time-and to get up to close it, I’d have to roll myself upright, stagger to the door and lug the IV pole with me. Too much work. I toy with the thought of throwing something at it to make it close, but nothing is heavy enough, and I don’t have the energy to throw it anyway. It’s easier to just lay there and close my eyes. Sometimes someone will close the door on their way out, but another person will leave it wide open. One nurse did ask what I preferred, and ended up putting a chair in the crack of the door to make it partially open, but the door eventually knocked the chair out of the way and shut anyway. Everyone knocks before they come in, which strikes me as a polite gesture, at least. As if I can say “go away!”

Nurses are constantly coming in to check on me. Vitals-BP and pulse. After a while, I just hold out my arm before they say anything. They all do their jobs properly, but some are more friendly and human than the others. A few can barely speak English and some look as though they’d rather be texting on their cell phones, they’re just going through the motions. I get to know their shifts and secretly give them nicknames. Wake up nurse is some kind of Asian; one that I can understand her English. Polite, fast, by the book. Laughing nurse comes on in the afternoon; she has an almost fake friendliness, always asking if I need anything, then laughs after everything she says.  Then there is Aussie, the only male nurse. He’s not one of mine, but I hear him going past in the hallways, talking to other patients. I can hear that he is straight up with them, not babying them, and telling them like it is. I like listening to him; it’s entertaining. The little things that entertain you when you’re stuck in a hospital bed all day.

I get regular visits by all sorts-interns, PTs, the head of the hospital, a volunteer giving me a rose, administrators making sure there were no issues with my care. I’m surprised a chaplain doesn’t come in-although I do get a brochure saying I can request one if I want to.

I hear the older lady patient across the hallway complaining, and the nurses grumbling about her out of earshot. I get to know who is around me, and gradually, who leaves and who replaces them. The floor isn’t full; in fact, the other wing isn’t even open. As far as I can tell, I’m the one there the longest. Wow.

I think it’s the end of the first day that they make me get up and walk. I was expecting this, like after my first surgery. The faster you’re up and about, it promotes blood flow, and so, healing, to the area. Hey, I’m all for that-the faster the healing, the faster I’m out of here. I brace myself for the ordeal of getting up and out of bed, remembering how it was before; roll over, feet on the floor, push yourself up by the arms, don’t use your stomach muscles. I’m surprised to find out that it’s not as difficult as it was before. That time I was so slow, it was an ordeal, and each day I got a little faster. This time, not such a big deal, and it doesn’t hurt. They give me a walker the first time out. I’m holding onto it, trying to drag it, wondering how all the old people do it. I feel like an old person too. Me, with a walker-really? Then someone tells me to lift it up and roll from the front. Ok-got it. I make a triumphant trip down the end of the short hall and back. I’m used to jogging so this feels ridiculous, but they tell me, just take it easy at first, build up to it.

After the first day, I’m allowed to have a liquid diet; broth, jello, that kind of thing. The big incentive is when you pass gas, you’re allowed to graduate to soft foods diet. I tell my surgeon that I want pancakes. Woo hoo! It turns into the question of the day: every time a nurse or doctor comes in, they ask “Did you pass gas yet?” It’s reduced to that.  I feel like after all I went through, the procedures, my guts and butt being looked at by everyone-I have no shame anymore. Laying there in a hospital gown, no make up, no shower, hooked up to everything-I’m completely at their mercy. I don’t like being helpless, but then, I think, they’ve seen it all, I’m sure.

Each day, gradually, I get disconnected from something. Day 2, I lose the oxygen. Day 3, it’s the leg cuffs. To replace that, I get twice daily stomach shots of Heperin (to prevent blood clots). My poor gut! By the end of the week, it’s covered in needle tracks and bruises. Normally just the thought of a shot in my stomach would gross me out, but after enemas preps, colonoscopy….it’s nothing. Amazing what you can learn to go through.

The day they decide to take out my catheter is also the same day my body decides to have my period. It’s also the same time that the surgeon decides to pay me a visit. So I’m standing there in my hospital gown, make up less, hair gathered in a mop style on top of my head, while nurses yank out the tube. “Morning, darlin’!” he calls out cheerfully as he enters my room. I’m guessing the sight of body fluids doesn’t faze him much anymore.

They disconnect my “E.T. finger” from me-an oxygen monitor-and with the catheter now off too, I can, and am encouraged, to walk as much as possible. I am usually an active person, not a couch potato. I can’t stand watching TV or sitting still for long, so I’m definitely motivated to walk. Around, around the hallways, back and forth, to the closed wing and back, several times a day. It doesn’t take long for me to memorize the signs in the hallway-a person with their finger over their lips with “hushes heal!”-warning people to be quiet for the health of the patients. There’s also something called a “Yakker Trakker” which looks like a traffic signal. The green light has a smiley face on it, the red light has a frowning one. I ask one of the nurses what it’s for and she says it monitors noise level; when they get too loud, the red light flashes and they’re supposed to be quiet. Funny.

I walk so many laps around that floor, the other patients looking out must get sick of seeing me. The PT guy comes by but says he can see that I don’t need him because I’m doing OK on my own. I agree to walk with him anyway; it’s nice to have company. I enjoy talking to him; he tells me about his job and we discuss learning instruments-I am taking guitar lessons and I’m using my guitar app to practice since I obviously can’t bring my real one in. The nurses and doctors smile and kinda cheer me on when they see me walking past yet once again, dragging my IV pole. It does make me feel better, having some movement, and it kills the time.

Rather than go out of my mind with boredom, I decide to make the best of it, and get into somewhat of a routine. I’m woken up about 6:30-7am by the Asian nurse checking my vitals and giving me the stomach shot. I get up and do a makeshift bath in the little sink by the window. Shut the door first, get a washcloth, balance myself awkwardly with the IV pole, and clean up. Brush my teeth, wash my face, clean underwear, the whole deal. It drives me nuts that I can’t take a shower, but especially that I can’t wash my hair. I say that to every nurse that comes in-that I want to wash my hair so bad! but they just tell me that the doctor hasn’t given permission for me to get the bandage wet yet. I wonder if there is a sink somewhere deep enough that I can just hang my head over? I’m not sure if I’d be OK to lean over with my stomach the way it is, though, and I doubt that’s the job of a nurse-to wash my hair for me. So I continually put my greasy hair up in a hair band. Shaving my legs-at first I do that in bed with a razor and hand cream. Eventually I go to the sink and balance one leg up at a time. The entire time I’m looking at the yellow “fall risk” band on my arm and the signs in the room warning not to get up without help, yet…I do all this, and constantly walk, and not one nurse says anything about it.

I order breakfast, then go walking. Come back and read for a while. I force myself to sit in the chair, not the bed, so I’m not dozing all day. I leave the door and window shades open to let in light and noise. Sometimes I take a nap later, but only if I’m feeling really tired or have pain. I don’t want to sit around like a blob, but I don’t want to push it either. I make myself have a positive attitude, that I’m going to do whatever I can to help myself heal as quickly as possible. I’m going to use this down time to recover. At the same time, I keep reminding myself-it’s over! you’re finished! the bag is gone!

And there’s that-finally rid of the dreaded bag. I have a huge bandage running from the former stoma site almost all the way across my stomach, like a big wide belt. Under that is about a 4 inch section, left open, with packing and stitches waiting. It’s covered by layers of gauze and surgical tape. Every day the nurses come in to change the dressing and remove the packing. The surgeon explains to me that some doctors sew you up right away, but that he prefers to leave it open to make sure there are no issues. If there was an infection, he’d have to open me up all over again, and I wouldn’t want that. Ah hell no! I’m thinking, but instead I nod and agree. He tells me by the end of the week, if all looks well, he’ll suture me back up.

So the bag is gone. I’m really surprised at how it feels anticlimatic. I’m already almost instantly used to it not being there. I have no residual feelings-checking it reflexively for leaks, repositioning it. No “phantom bag” feeling. When I go to the bathroom, I don’t automatically reach to empty it. Weird.

Day 3, I think, is when I finally do it-pass gas. Hurray. And I do it alone, no nurse in the room, no fanfare, no trumpet blast. This time, when the doctor comes in to ask, I can tell him “yes”. He smiles and quips, “Ok, now you can have your pancakes!” The little things.

First sorta solid food in a few days. It comes up and doesn’t look half as good as the ones I was craving from Pantry Deli, but hey, it’s REAL FOOD! I also order an indulgent side of home fries. Mmmm…almost heaven. I eat everything slowly, chewing it over and over, almost afraid. Eating solid foods means…it’s going to come out…and for the first time in months, not in a bag. I’ve heard horror stories on the online ostomy blogs….”it’s going to hurt!”, “make sure you have diaper wipes”, “have plenty of diaper rash cream!”, etc. Warnings of diarrhea, that it’s going to come randomly, you can’t control it. But you know what-when it finally happened, when I went to the bathroom like a big girl finally….and this is for those who have an ostomy now and are thinking about reversal…IT WAS NO BIG DEAL. It didn’t hurt. I didn’t have constant diarrhea. I didn’t use a diaper wipe, and the rash cream I’d bought…remains unopened. Here’s the truth: the area that controls the urge to have a BM is a different area of the colon…so unless you get your sphincter removed also…you don’t have to worry about crapping yourself uncontrollably. Don’t listen to the horror stories. Ask your surgeon. It does not have to be the drama that they say it is. Again…going to the bathroom was anticlimatic. It just felt like normal, I was already used to it. That meant the surgeon did his job and everything was working as it should be-good signs. I thought about that super soft package of toilet paper I had waiting for me at home as a reward. The little things.