Surgery here I come (Updated over years, from UC to Jpouch to Healthy Ostomate)

I'm now over 7 weeks past takedown. I wish that I had not gone with the flow and rather had gotten a permanent ileostomy. I try not blame myself because my decision made sense at the time when I made it, but it's hard knowing that I could have said no to the pouch and made life much simpler.

Right now I'm dealing with daytime and nighttime leakage, high frequency, and frequent rectal pain/pressure/discomfort. Lomotil helps, immodium doesn't (sucks, since I had a better method of getting immodium). Fiber doesn't seem to help much. I am trying anti-spasmodics to see if that helps my rectal pain. If I get really miserable I take percocet to give me a break from the pain.

It's upsetting to need medications again after being med-free while I had my stoma. Occasionally I see blood, but my suspicion is that this is normal as my cuff looked pretty healthy on the 1 week post-takedown scope. I have become a professional at butt hygiene, because otherwise anal irritation can get way out of control (I shudder to recall the early days). I have a squirt bottle for my hiney at both my lab and my apartment. I poo by leaning forward, squeezing my abdominal muscles, relaxing my sphincter, and pressing medially on my former ileostomy site. When I get a column of explosive gas out, I know I've just earned myself some well-deserved relief. Also, I would like to share that balneol can be a good way to clean the anal canal and give yourself a break from the internal itching that may occur.

That said, things are not as bad as UC anymore. I do enjoy not having a bag. I have decided to move on with my life and am currently doing a research internship, despite my health difficulties. If things really suck at the ~5 month point, I may ask to have my bag back. If I feel like there is hope, I will reach the 12 month point and reassess. I DON'T want to be one of those people who have a bad surgical outcome and just suck it up for the rest of their lives.

Those UC'ers reading, do not be too discouraged. Before my op, I talked to people who were happy with their decision to get a jpouch. Most people are. Chances are, I'm just in a "slow-progress" group of patients rather than a "poor outcome" group. My advice is to be careful of the "de-facto" status of the j-pouch which most (certainly my) doctors hold. Nothing comes for free in life. You can live without the bag, but there is an unknowable price to doing so. My mistake was thinking that the best surgeon, diet, and probiotics would guarantee an excellent pouch. There are a TON of unknowables in terms of what your long-term outcome will be.

I will keep you updated as to my progress.

SolomonSeal said...
I poo by leaning forward, squeezing my abdominal muscles, relaxing my sphincter, and pressing medially on my former ileostomy site.

This is not normal. You may be suffering from a stricture or pelvic floor dysfunction. Have you explained this to your surgeon or GI?

3 Month update:

I am studying/working abroad, but felt like it would be a good idea to see a local GI nonetheless. He said about the same thing as my GI and surgeon (try a pouchitis antibiotic combo and see if it helps). He said about 50% of patients reach the 4-7 BM and feeling normal point at around 3 months. Interestingly, apparently the jpouch failure rate in Germany is 17%. I wasn't happy to hear that one. O_O

I must have/have had pouchitis. Since I've started cipro and flagyl my pouch symptoms have significantly improved. Unfortunately, I still have frequent episodes of mild/medium incontinence. Nighttime pain and frequency is still a significant issue, but overall the frequency has gone down and the BM's have totally changed. They are formed more often, are easier to pass, and are much less explosive. Previously, the toilet bowl was pretty gross. After the antibiotics, there are no more poop-splosions and the toilet bowl is clean again... Still not feeling great, but I feel like the antibiotics let me NOT be a zombie for part of the day.

Everybody says give it 6 months, and I am planning on doing that and hopefully seeing significant improvement by then. It's upsetting to go from being told this will be my "cure" and that I should have an excellent pouch outcome to discovering that I have pouchitis... it validates all the cynicism I developed about any treatment for IBD. Especially because it is happening early, there is a chance that my pouchitis either is chronic or will become chronic, but right now I will not dwell on that. If that becomes the case, at least I will have that knowledge and be able to make new decisions to lead me to a better place.

For those still following:

I will update this thread until it has a happy ending. I like to think that such a thing is still possible.

4.5 month update:
I spent three months doing some biomedical research abroad. Currently studying abroad. I think it was the right decision rather than staying home and focusing on the pouch 24/7.

Pouch performance seems to bounce back and forth every couple of weeks. At its best, I have 2 nighttime BM's, 6-7 daytime. Currently I'm in a bad spell with 4 nighttime BM's, up to 10-11 during the day. Average is obviously in between. Holding causes me pretty rough rectal pain. I still am dealing with regular incontinence. I have been able to reduce my use of pain medication to a minimum. I am not as tired or depressed as I was initially, but I would say most of that is due to readapting to a lifestyle with GI issues. My body has learned to deal with this.

It looks like my ileostomy closure scar is keloid. I get some pain and other funny stuff from the area, but it sounds like there isn't much that they can do for it.

I will have a pouchoscopy next week. Hopefully I will get some answers then.

i'm sure everything will go perfectly and wish you all the best!

I feel bad for you.. What a huge disappointment!! but I cannot help but think that things will improve over time, I hope so, and so do keep posting to let us know how you are getting on.

Well, if things don't get better the next line conventional treatments are different antibiotics or trying UC style immunosuppressive meds. I am not interested in the latter.

I don't think there is anything mechanically wrong with my pouch, so I don't see what redo would help with. From my perspective, if reasonable treatment fails after 1 year mark, I need to talk to my surgeon about how safe pouch removal with end ileo is and what long term expectations would be. I'm hoping I don't need to face another operation.

Solomon,

I can only speak from my experience with my pouch and pouchitis, Antibiotics taken individually did not work for me; I had to combine them to get them to work...like Cipro and Flagyl together. After a while that combination did not work for me and I had to switch to Augmentin and Cipro, which was very effective for me. I've also used Entocort and Xifaxan which didn't work for my pouchitis.

Unfortunately Antibiotics give me Thrush after only a few weeks which makes things worse for me and I have to treat that too. It was like a never ending cycle for me.

I've always taken Culterell as my probiotic but at my nutritionist's and GI's insistence they switched me to Florastor to help with the Thrush and pouchitis, it has made a huge difference for me and I've been able to cut almost all my antibiotics out, right now I'm tapering down to Cipro once a day.

I was getting really frustrated with the Thrush and asked my GI to get me Cimzia so I could get off the antibiotics but if the Florastor works then I'm probably going to put off the biological for another time.

The way I look at it is that it's a lot easier for me to try medications then to go for another major surgery, but my pouchitis isn't that debilitating for me.

I'm 7 months out and it seems that I have failed all antibiotic therapy. My GI doctor is talking about steroids and AZA. I intend to refuse immunosuppressive treatment. I feel like I'm running out of options.

Currently dealing with frequent spasmodic pain, 15 BM daily and frequent incontinence. Still carrying on with my life as best I can, even if it involves pain.

My desire is to get through next months using pain meds and sheer grit. I want to confirm that what I am dealing with is indeed chronic pouchitis. If that is the case and I cannot get it naturally under control, then I will see if the risks of pouch excision are acceptable. I wonder if getting out sooner will reduce the damage it does to my body.

The jpouch has been one of the worst mistakes of my life. I hope that I will be able to forgive myself one day.

Please, please don't blame yourself. You made the best decision you could based on expert advice, research, your age, etc. Your pouch isn't a "mistake"-you're simply having very bad luck with it. There was absolutely no reason to expect this to happen.

It's like being mad at yourself because you got in a car accident on the way home and thinking that if only you had taken a different route, the accident never would've happened.

I'm a person who is constantly second-guessing myself. I have a great memory and anytime I do something/not do something and it doesn't work out, I remember and fret about it for a long time. I've learned that this is a way for me to feel in control. Unconsciously, being out-of-control is worse to me than being angry at myself about things that I couldn't have done anything about.

Please don't beat yourself up about this. Sometimes bad things happen and there's nothing we can do. I recommend you go talk to a therapist for short-term therapy to help you feel better about making the j-pouch decision.

Solomon,

Maybe you can try something else to hold you over until you decide on the future for your j-pouch. I started Cimzia last week for my pouchitis because I wanted to get off of antibiotics; within about 3 days my pouch became easier to empty and made much less noise during the day and at night.

Hey guys,

Thanks for the support. Although my surgeon and local GI are quite knowledgeable about pouches, I'm going for a 2nd opinion at another major medical center. I'm also looking into visiting Bo Shen (not simple, since I'm currently abroad from the US). I doubt they will give me anything new to work with, but if they confirm that I am really dealing with chronic pouchitis, it will at least give me the peace of mind of knowing what the situation really is and what my options are. I am looking into a surgical technique called TAMIS which might let me have pouch excision more safely, if and when it comes to that.

Although I am impressed with Entyvio's safety, for the most part I'm unwilling to do biologics and systemic immunosuppressants after my experience using them for UC. The jpouch also just isn't worth the drug risks... I cared so much about my colon, but what I have now is not half as valuable to me as my natural large intestine was.

notsosicklygirl said...
There are times that I feel like the perm ileo is the best solution to all of this. Less surgery, less adhesions, no risk of pouchitis, no meds after surgery, TI in tact... I can't see going through this and taking drugs afterwards.

I think you hit the nail on the head. This is how I feel about my situation. That outcome would have been much better than the one I have now, and it would have been easier to obtain. At this point, the question is how bad will the extra adhesions, additional bowel resection, and all the other scary potential complications be if I proceed to pouch excision. I've been keeping up with other people's stories. I hope we can still have a happy ending.

I am rooting for you too. You are brave!