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.
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!
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.