Stoma woes

Yeah, I know, this is the Crohn's board, not the Stoma board, but you guys don't mind me venting/whinging, do you, right? Guys? Guys.....?? >.>

Anyway, I'm just rather upset by things. I've had two leaks today, and I don't know why: used the same bag/seal that I've been using for weeks without any problems. The first time it happened, I was sitting in the garden, and had to dash/hop off to the bathroom, leaking all over the floor as soon as I took the bag off. You know what? I'd rather be incontinent with Crohn's than I would with a stoma. I'd rather wear an adult diaper than this. At least a diaper stays on. It's not the going in a bag that I mind: it's the incontinence. It just makes me feel a bit dirty, to be honest. I know it's not my fault, but I absolutely hate this.

I still can't accept that my Crohn's got to this point. I'd have been fine with a resection. I'd have lived with any number of daily BMs than this. I'd rather go 30x a day than have a stoma. And I'm just livid - with what or who, I don't exactly know. I feel like this all happened 50 years too early: in 50 years' time, they'll probably be able to grow colons from your own stem cells, or whatever. Heck, even in 10-20 years' time, they'll probably have some better meds.

I got Crohn's about a decade too early for really effective treatment; by the time I finally got onto the biologics, it was pointless, it was too late.

Anyway... Sorry guys. I just really have been quite down for the past few days. I've not been giving in to it, but the leaks today were kind of the last straw.

Hi gumby :p

I'm feeling a bit better now; just rather drained. But I was oddly drained earlier on; drove to the supermarket and nearly had a fit in the parking lot. Just wanted to stop where I was; the effort of lining my car up into a bay was too much!

If I get any more leaks, I will call the stoma nurses. The last one I saw said they'd be at my surgical appointment this Thursday, but I don't really want to spend the surgical appointment talking about leaks: I want to talk about having a reversal! >_>

I'm sure in 2 years' time I'll be okay with the whole stoma thing (because I don't think a reversal is likely unless my rectum is free of disease, and I'm pretty sure it's not...). But for now, it's just... icky :-/ I dunno, I just can't really accept it yet. But last time I told my stoma nurse that, she said it was entirely understandable. Said it took about a year to accept the stoma, and that even a year might not be long enough.

I read your last post and responded to it there. I can understand being terrified for your child. I wouldn't wish this disease on my enemies. The only thing that can be said about that is that if a child is diagnosed today, there will likely be far better treatments (not just biologic #10, or whatever) in their lifetime, and quite likely even an actual cure. I just think that something like stem cell therapy has to live up to its potential one of these days and new bowels can be grown. Or the immune system reverse-engineered. Or, most radically of all, MAP might actually be proven to cause Crohn's! I'm probably talking utter rubbish, but I just feel something has to pan out eventually.

thinking about you! hang in there.

Thanks folks :p

Gumby - That's awesome about your daughter being on a stem cell research team. If I had my time over, I would like to be a medical researcher. That, or being a doctor - Dr. NCOT :p

Fruitcake - Thank you. You don't need me to say it sucks that the Crohn's has been re-activated and that you (presumbably) have to go back on the meds, but I hope it goes into remission. My doc wanted me to go on 6MP as a prophylactic treatment but I just said no. I didn't say no blindly, I did give my reasons.

I do take as good care of my stoma and skin as I can, purely from a practical point of view. But I've never been quite happy with my peristomal skin. I saw a photo of somebody's peristomal skin and it looked beautiful - exactly like normal skin right up to the point where it meets the stoma. Mine is sore all around the stoma, but my stoma nurse said that was superficial: if you press it it blanches and goes back to normal in milliseconds. Anyway, I just feel like I could make my skin better, but I don't know how: already use Cavillon spray, barrier ring, and, of course, the bag. All I can think of is to try the 'crusting' technique that other folks have talked about, and if that doesn't work, then I dunno what else to do.

The two things which most deter me from just going out and are doing something else are fatigue and my skin. I do worry about leaks, but they're not a major deterrent to going out. Getting two leaks in one day is highly unusual; if that happened regularly, I think I would start to become a shoe-in - even more than I already am, I mean. But luckily it's rare.

But my skin is another issue. Something caused my skin to become massively sensitised to breezes, sweat etc. about 3 months ago and it's never been the same since then. It's also incredibly itchy at times. I already had enough trouble sleeping; my skin made it 10x worse. I went through a really, really bad patch with insomnia, until I couldn't fall asleep until 7am, just because of my skin. I'm on Zoplicone now and that does work, but I hate it. Nothing else made me take sleeping pills regularly until this! I really wanted to go med-free for a long time, to clear my body of all the meds I've been on, especially Pred and Oxy.

I've been going through some bad patches of depression because of the above: it's not just been the stoma. If I could get my skin and sleeping issues sorted out, I would be, if not exactly golden, at least a pale shade of yellow :-/

Anyway, thanks Fruitcake, and apologies for the slightly meandering reply. Hugs back :p

I know Pred can cause skin issues, but what about 3 months after being off it? (Same goes for Oxycodone too.) If I knew this was the temporary aftermath of being on Pred for a long time, and it'll go eventually, that would be absolutely fine. But I can't find any info on it: all talk about side-effects assume you're still on Pred.

I did come off Pred relatively quickly, though. Tapered fast from 40mg to 10mg, then tapered off 10mg at the rate of 1mg a week. That felt slow at the time, but I wonder now if I should've tapered off even more slowly. However, I didn't have the recurrence of Crohn's to worry about and I just wanted to be off it. However, I've been so fatigued and sleepless (not to mention the skin) that I think in retrospect I should probably have taken about a year to taper!

I'm almost considering asking to go back on a low dose of steroids to see if that helps my skin - and then taper ultra slowly - but I ain't that desperate yet. I'll give it another month or two first.

I'm using Salts bags. I googled Sween creme because I hadn't heard of it: using a cream doesn't make it harder for the adhesive to stick to the skin? Other than that, it looks decent but it doesn't seem to be something that's readily available outside the US.

Anyway, cheers Fruitcake. Hugs :p

Cheers, skibaboo - hugs back :p

Re the dodgy flanges. My stoma nurse today said I might have had a couple of dodgy bags. Apparently it happens occasionally. I did actually feel like the bags weren't sticking as well as they normally do, but immediately after a bag change it's hard to tell, because it does take a little while for the adhesive to settle.

Anyway, it's reassuring to hear you've been almost Crohn's-free for 16 years! One of my worries - dread, almost - has been the Crohn's returning. But it's been almost 5 months now since surgery and still no sign, so I'm starting to relax a little bit. But I think it will be a long time before I can say I truly feel Crohn's-free.

Joining the gym and/or learning to swim is something I'd eventually like to do, but I'm gonna wait until I'm year out of surgery before considering anything like that. I think it's going to take a year just to physically get back to normal: the surgery has been more gruelling on me than I thought it would, tbh, considering that I was relatively young and healthy (Crohn's aside) going into it.

What part of the UK are you from? I'm from there too :p

Poncy southerner here >_>. Born and brought up in the wastelands of northwest London. I still live in the south, but outside of London now.

Anyway, physically I do seem to be getting a bit healthier. I can go on a walk now. But a better test will be tomorrow; gonna go to Westfield shopping centre with my mum and her friend. If I am not utterly done in for the whole of the following day after that, I'll know I've improved.

Barrier rings, yeah. The bags stick on fine without them, but I use them to protect the skin. My stoma points upwards rather than downwards, so unless the hole fits over the stoma with surgical precision, the output tends to escape through the gap onto the skin. It's apparently just the way the bowel chose to settle after surgery... :-/

I'd be interested in seeing what the 'mesh' undergarments are! Thanks :p