J pouch surgery, do you regret it? will you do it?

notsosicklygirl said...
People say they eat whatever they want but from reading the ostomy board, I notice a lot of people eat certain things to slow output or to thicken output. People also eat earlier to avoid getting up more times in the night to use the bathroom or "empty". It's not all a bowl of cherries. Better than active UC, sure, but nothing beats a functioning colon in my opinion. People also use the bathroom a lot more after. I don't think pooping 6x a day is ideal. Dealable, sure, but not ideal. Oh and another thing, 6x seems to be the "ideal" result, some go 10x a day.

Just like everything else....this stuff is different for everyone. I can only speak for myself when I say that I truly do eat anything I want. I don't ever think about eating things to change my output, I never restrict when I eat to control when I have output. Yes, most nights I get up once to empty, or let out gas, but it's usually after I've been asleep for about 5 hours. Since I'm the type who doesn't need much sleep, this is very manageable for me. I empty my bag when I pee....maybe one time a day I have to go to the bathroom just to empty it, but that's all. That means I go to the bathroom the same number of times, if not less, than when I had a "functioning" colon. Honestly, I think I would go more if I had gotten the J pouch.

I don't think anyone here is trying to say that an ileostomy or J pouch is a better option than a "functioning" colon....though, there really is nothing about having a bag that I dislike, and some things are actually easier WITH it. Of course, in a perfect world, I never would have gotten sick and never would've had to make the choice to have this surgery. But, speaking for myself, I couldn't be more happy that I did make the choice and will treasure each healthy moment it has given me.

I just went through step 1 of 2, 3 weeks ago for the j-pouch.. I had Colitis for 10 years and tried everything aside from regicide, including diets and any other alternative treatment you can think of. My flare ups seemed to get more frequent and the only that seemed to work was prednisone, but I had to keep in reading the doses every time for it to be effective. The way I saw it, I would rather cut this sucker out, which started to seem inevitable, more of a when not if situation, and deal with the life changes that came with it. I hated being sick and relying on medication, which potentially would endure causing me more problems later in my life aside from the Colitis. I'm 27 and wast prepared to be a guides pig for the drug companies for my lifetime. I can honestly say the surgery was a breeze, I did have some pretty bad gas pains after the surgery but apparently this isn't very normal. Anyway, I can honestly say that I haven't felt this good in years, and I have not for second what any acidity about if I was going to go into a flare because I jut had a pizza or a bowl of ice cream, it's honest the most liberating feeling. I was scared before the surgery, but looking back after the first step now, it was a breeze. I honestly felt zero pain age the surgery, from the surgery itself, I did have some pretty awful gas pains but that's because I ate too much to soon. I'm happy with my decision and have control of my life once again. colitis doesn't rule my mind anymore.

I think nssg has summed it up:

Whatever the case, I can see it being easy for some and difficult for others.

Exactly right. You can't promise it will be unicorns and rainbows for anybody. It may be or it may not be, but you can't tell in advance.

It's not just the stool, though: gas is also produced and this can make the bag swell up like a balloon. If you don't empty the bag when it gets like that, then the pressure can force a leak. I found this out the hard way one evening when lying on my bed and too lazy to get up to empty the bag: the contents spilled all over me and the sheet.

I think it's funny sometimes the way we talk about "eating whatever we want" and seem to forget that 99% of healthy people can't eat everything either without having occasional abdominal pain and diarrhea.

Not true for me. I never, ever had food-related diarrhoea and abdominal pain before I got Crohn's. My family were pretty much the same, and my friends seemed to be as well.

I did have chronic constipation as a child and adolescent, which was probably at least partly psychological in nature, but when that eventually cleared up (yay fibre!), I had a miraculous digestive system. I did eat everything, including extra-hot curries. It was the bomb, to be quite honest *goes misty-eyed with nostalgia*

Edit: Sorry ByeByeUC, your post wasn't there before I replied to Pluot. Yeah, we may indeed be hit by a bus tomorrow. Or we may have an unsuccessful outcome with surgery. I think people have a tendency to make assurances that they really shouldn't make about surgery: it's one thing giving your own personal experience; another thing to assure somebody else that it will be absolutely fine and they won't regret a single thing. Nobody knows that. That's not aimed at you, it's a general observation: I was told something similar by my stoma nurse and, in retrospect, I don't think she should have said anything about it. People can hope for a successful outcome, but nobody should promise it.

Edit: And now I look an even bigger fool because ByeByeUC must have deleted her post or I must have hallucinated it... :-/

Post Edited (NiceCupOfTea) : 1/7/2014 2:57:56 PM (GMT-7)

I think the order is like this: Working colon > remission > j-pouch > being sick

I've been eating as I wish for years without problems. When I was flaring I couldn't eat anything. I have been up and down the past few days. Makes me remember how bad it is to be teetering on the edge of sickness. Hopefully things improve.

NCOT, have you tried a lot of different products? it seems like people are very particular about what works for them but once you find something that works well, you can stick with it and it makes life a heck of a lot easier. I was reading your other post about leaks and it made me worried because I also have VERY sensitive skin and adhesives always seem to cause me to my skin have an allergic reaction. I think I would want to get samples from all the different manufacturers and try to find that perfect bag. It has got to exist!

nssg - Nah, not really: lazy like that :-/

I will start looking though. Since people seem to swear by their 2-pieces, I'll give them another go (really didn't like the only one I tried, but it may have been the brand...). A couple of people suggested trying a convex wafer, so I'll try that too. What does my head in is that manufacturers often have several versions of the same bag and it's not at all clear what the differences are between them are.

The wafers are much more hypoallergenic than they used to be, so you should be able to find something your skin can tolerate. It's really not a bad idea at all to road-test the bags before surgery: for added realism, half fill them with oatmeal (I think Probiotic really did this <_<).

Edit: Lolzers, not again >_>. Sorry ByeByeUC, once again your post wasn't there before I replied to the person before you!

hmm, it actually would be interesting to test. that's always been a huge worry of mine, what if i needed surgery and i was allergic to every single adhesive? Good to know there are so many options that are hypoallergenic. I hope you find something that works. I bet if you found the perfect solution, having the bag wouldn't be too bad. I mean, as long as you can empty it quickly and easily without any incidents and changing it is not too much of a chore, it can't be that bad :)

As a pre-surgery individual who still lives with very active UC the downfalls that are discussed on a regular basis with a bag or a j-pouch are all much much better than what I live with on a daily basis. 10x times to the bathroom? I do that during my sleeping hours most days with pain, urgency and blood. Possible leakage or full incontinence? Check, I need to sleep with a hospital pad under my butt and drive with one too, not to mention timing my drives in between BM's. Not eating what I want? Well that's hit or miss since absolutely everything goes right through and nothing seems to help, so I guess I eat what I want or nothing at all. I do constantly lose weight as my body deteriorates.

I've only had UC for a total of 4 years and is say the last 2 have been awful so I can remember how my functioning colon was and I'd have 2-3 BM's a day and certain things would give me diarrhea or loose stool, such as high caffeine or overly spicy stuff.

Grant it, I'd think we would all rather have never gotten the disease and never had to know of the medical therapies and surgical options, but with having already gone through the medicinal route the surgery is a no-brainer option even if I do experience some downsides and lifestyle adjustments. I won't have a hard time forgetting how things were and with no meds and no pain, I'll have a smile on my face even if my bag leaks or my j-pouch experiences pouchitis every once and a while.

In hindsight, if the surgery does make me feels that much better I'm probably going to wish I did it before I got into the heavy steroid use and bioligics since that stuff is horrible for you anyway and the little help it provided for the short duration wasn't worth the risk it put me in anyways. Not to mention the times I was in "remission" which is a unicorn UC'ers chase, there's always the constant fear and anxiety or flaring again, at least for me. That alone caused stress and every little weirdness in my gut caused an outright panic for me as I know and fear how terrible life is flaring.


Idk, I guess like everything else it's all based on the individual and perspective. Unless people started dropping dead from their bags and pouches I don't think there's anyway for me to think its a bad option by any stretch. I do love these threads though because I just love reading about people with bags and pouches and how they're day to days are and trying to visualize how mine will be. I'm excited to try a new route and adjust to life post-UC.

That's just it. Often you don't know your pouch needs emptying because you go to the loo feeling the urge to urinate and you get a two-fer. Emptying the jpouch is as quick as urinating. It's not a big deal.
No pain, no urgency, no blood. Hooray!

Sue

I have very mixed feelings about my j pouch. It's been 14 years and back then there were not a lot of options. I was very sick and really at the time this was the best option. I did not suffer with UC very long but the last flare hit me hard. I wish I could say that I'm medication free. For me it's still a UC roller coaster. I also suffer from adhesions. Would do it again! yes. It's a new normal. I would have regretted trying the j pouch and I was still fairly young. I know how u feel right now as I felt that way before I had the surgery. I would have done it sooner but had no family support till the choice was taken out of my hands. I hope if u do it your one of the lucky ones whom cuffitis or Pouchitis does not affect you. With a good GI it is mangeable

beatUC said...
Thank God I didn't listen to that idiot. I wonder how many of his patients sadly did listen to him…

Or happily listened to him and are doing great today UC free. :) I don't know your doctor...maybe he was an idiot, but it was the wrong time for surgery for YOU but maybe the right time for someone else.