I'm sorry, Kyle, this stinks. If your pouch has truly failed, then you don't really get to choose whether to have another surgery. Depending on why it failed, options might include pouch advancement, pouch reconstruction, diverting ileostomy, end ileostomy, and continent ileostomy. Folks who have their pouch removed seem generally pleased to be rid of a big problem.

It's possible that there are some measures that you haven't tried, though. Saying "virtually every medicine" makes it nearly impossible for anyone here to identify missed opportunities. For example, if I hadn't read Shen's article and pressed my gastroenterologist for combination antibiotics, I might be in your shoes today. Instead I have a J-pouch that's working just fine, and a far preferable (for me) alternative to surgery and external ileostomy. Other commonly missed diagnosis and treatment possibilities include C. Diff, high-dose probiotics, and a very low carb diet.

I hope you're consulting with a knowledgable gastroenterologist, and not just a surgeon. If I were in your shoes I'd be planning a trip to Cleveland Clinic to consult with Bo Shen.

I feel for you.
Sorry things are not working out. You are so young.
Scott had some very good advice.
I don't have any. I am fairly new to a j pouch.
But I am sure seasoned poachers will have more good advice.
Good luck on your journey and fight for your pouch.
I would.
Richard.

Thank you scott and Richard, and im sorry, shoulda been more clear on that. i tried the VSL for a little while and that didnt work, i tried both metronidazole and cipro alone multiple times, and then i tried them together, but each time they didnt work.
I also tried and failed some medicine before the surgery too so i dont know if that helps at all. I tried the humira, the remicade, the the steroids, and all the other basic medicines, but it seems that my body isn't handling any meds too well.
But I atleast want to Keep trying the medicines before i jump into another surgery, atleast until i make it a little further in college, so i have a degree to fall on instead of having to start again.

Thank, Kyle - that helps. You've tried plenty of things, but only two antibiotics. If it's really just pouchitis alone, there are additional choices, each of which kills a very different selection of bacteria: Xifaxan, Tindamax, doxycycline, amoxicillin, Augmentin, Ceftin, ...

For VSL to help me I have to take four double-strength packets per day, and it takes weeks to see results (if it works). What dose did you take, and for how long?

So: how confident are you in your diagnosis? Have you had a pouchoscopy? Could you have more than one problem? Heck, what are your symptoms? Some symptoms can be substantially improved by bowel slowers (e.g. Lomotil, Imodium), or thickeners (e.g. Metamucil, Citrucel). Heck, if Lomotil won't do the trick some use codeine or DTO (deodorized tincture of opium).

I still hope you've gone beyond the surgeon at this point. Good luck!

Again i would like to thank you again Scott, i was not told about all of these options for antibiotics and will bring them up to my doctor. Im honestly confused why she didnt bring them up to me before. and i have a doctor right now who is a part of the GI team at University of Penn, and she keeps telling me that her and her whole team want me to consider getting the surgery, which after what ive been reading on here, its time to go get a second opinion.
For the VSL i beleive i had the same routine as u, the two packs of double strength twice a day. I personally did not have much success with this after about a two month stretch. and i have been using immodium for the past couple years on a daily basis and i dont really think it has had much of an effect.
For tests done, i have had two flex sigmoidoscopies in the past two years and every time they have said it is pouchitis, but i am scheduled for a third one in mid december. i have also gotten a good bit of MRI's on my mid section, and they didnt see anything different. I am also scheduled for another one the week following thanksgiving.
And honestly i am not very confident with my diagnosis. After being assured of my pouchitis for the past two years, they are now saying i could have developed crohns disease or have a problem with the remaining rectum tissue but they are not sure. My symptoms include diarrhea around 15 plus times a day, not really sure the exact number, blood in my stool, mucus, loss of energy and appetite, which is probably due to the other symptoms and dehydration. and some abdominal pain.
But again thank you very much i really was not expecting such an quick response from my question, i am really happy and thankful for that. and i apologize for the lack of information and the poor quality of my posts. I am and have never been very good with even discussing any of my problems with the people closest to me, let alone people i dont know, and i struggle putting my thoughts on this subject into actual words. So thank u also for asking more questions because again, im not very good at this yet haha.

The story is a bit clearer now, Kyle - thanks.

Pouch removal is a significant surgery. It's sometimes necessary (and quite helpful when that's true), but best reserved for when all else has truly failed. It would help to get a clearer set of diagnoses, since that would help guide the treatment. Cuffitis (UC of the remaining rectum) is a different story from Crohn's, though there is plenty of overlap in the treatments available. If you indeed have Crohn's, the surgical options are likely to be much more limited.

Imodium never seemed to work for me, either. I get better results with Lomotil.

Did you use the VSL in combination with antibiotic, or separately? VSL tends not to be sufficient when used alone on active disease.

I think the second opinion is a good idea. If travelling to Cleveland is out of the question, you might find someone knowledgable closer to home - if not Philadelphia then perhaps New York, an easy train ride away.

Kyle,

Have you read the very comprehensive pouchitis article linked in the pouchitis forum "sticky" thread? If not, you should, so you can get a handle on all your treatment options.
http://j-pouch.org/eve/forums/...1071921/m/5217016766

If Crohn's disease of the pouch is a likely suspect, then all the Crohn's treatments are an option. Just because they failed preoperatively, it does not mean they will not work now that your colon is gone. Especially if you have Crohn's, you do not want to remove any small bowel unless it is a last resort. Plus, for some people, surgery can trigger disease upstream from the surgery site.

I second the idea of a second opinion, outside of your current GI group. A fresh set of eyes can make all the difference.

Jan

If I were trying to stave of losing the pouch for good, even if I had tried these things

"I tried the humira, the remicade, the the steroids, and all the other basic medicines, but it seems that my body isn't handling any meds too well. "

Pre-pouch and they failed, I would try them again. I have been controlling my pouchitis for the past 1.5 years with Immuran, some entocort and rotating antibiotics. If you could not tolerate steroids, immuran, or biologics before, that may not be an option, but if you tried them before and they stopped working, it is still "possible" they could help with pouchitis.

Best of luck.

p.s. I don't put as much stock into VSL curing pouchitis as some might. Although they have 2 studies to show their effectiveness. Subsequent researchers have not been able to replicate those findings. It/probiotics probably works better preventively/proactivitly than as a treatment of pouchitis.

Kyle I don't have a solution but I did just want to offer my sympathies. My illness set in about the same age (as it does for many) and I wish you the best.

Hi Kyle,sorry to hear about your troubles, I too have suffered from pouchitis for years, I find it worse than my original UC. I wish that I had not gone ahead with the pouch, I found the colostomy no trouble at all, then surgeon said that he was prepared to give me the pouch. Brilliant for the first year, then pouchitis started, cipro, augmentin, then both VSL you name it Ive tried it. Be careful with cipro, this gave me C-diff. It is something in your body that causes the inflammation, all the drugs they give you suppress your immune system and can cause serious side effects. go onto the colostomy forum you will find that most people live a normal life with a colostomy or ileostomy. Hope you make the right choice, Surgeons in the UK seem to be moving more towards external pouches because of pouchitis and after effects of internal pouches.

Kyle,
I really hope they can help you! I loved my pouch and tried it all to get it to work out, but I lost my 15 year old pouch this spring. (I see you're in Philly- my jpouch was created at HUP!).

In my case, yes, the incision is again that big midline incision like before. My stoma is in the same spot at my first one. I am very happy with my decision! I workout (sweat!), wear most of my normal clothes (I made a few adjustments to make everything seem more secure), do just about everything I want to.

It's a major, major surgery though. I planned on an 8 week recovery (week in the hospital, 4 weeks on pain killers (no driving), no lifting anything, etc). I was really good by 6 weeks, but totally healed by 8 weeks. I think I had gauze on my incision until at least week 6. I walked every day, but didn't work out for 3 months post op. It's a big decision to go back! But I'm so healthy now without my pouch. Zero issues or symptoms!

Laura

Look into this doctor he is in west los angeles hollywood, t an alternative, i stumble across by accident, i am going to talk to my surgoen about him, if its the only last resort, better than having a messy bag.
www.ileostomy- surgerey.com

Hey Kyle,

I'm also sorry to hear about your troubles with the pouch. I felt the need to comment since like LHetti I too had my pouch created at HUP!

I can't say I've had too much experience with pouchitis (knock on wood), but I know that even little problems with the pouch can cause great suffering. Before going off on too many tangents I'll be direct. Aside from getting another surgical opinion, which is something you definitely should do if you haven't already, have you had any chance to experiment with medical marijuana?

I know that cannabis is still illegal (although not for long hopefully), and that Pennsylvania isn't exactly the ideal state to obtain it, but I honestly believe that the drug continues to show incredible promise in regards to treating inflammatory diseases and conditions. If you've never tried it or don't have much knowledge about it, it's easy to disregard it as a potential treatment. But don't let the government and years of a bad reputation affect your decision for something that actually has the potential to help treat you or at least diminish your symptoms.

I'll give you several brief reasons why. Number one, I recently met someone who has ulcerative colitis that smokes every single day to medicate. Barely any medications that he tried ever really worked for him including the immunosuppressants, steroids etc. He started Remicade several years ago and had only minimal improvements from it. He finally started medicating with marijuana and since then he has gone into FULL remission. He feels better than ever, functions as a contributing, healthy member of society and still medicates with cannabis each day. He doesn't smoke to get high but to get by.

Number two, in terms of some science behind it, cannabis contains compounds called cannabinoids which are the main chemicals responsible for exerting many of the drug's effects. THC or delta-9-tetrahydrocannabinol is the main compound that promotes the psychoactive effect or "high" that people get while using cannabis. One of the other important players is called CBD or cannabidiol. Recently, CBD has been scientifically proven as being a useful medicinal compound that has anti-cancer, anti-inflammatory, anti-anxiety, and other types of beneficial effects in our bodies. The real kicker is this: CBD binds primarily to specialized receptors called CB2 receptors to exert its physiological effects. The majority of these receptors are present on cells throughout our DIGESTIVE TRACT. Bingo!

It's no wonder to me why this drug shows such promise to treat a wide variety of diseases, especially problems of the digestive tract like IBD, IBS, and even cancers. Do some research and see if you can try it at all. If not no harm, but what do you have to lose?

Also let me know if you want to talk more about it or just in general etc. as I live like 5 minutes across the river from Philly.

P.S. Many strains today are being developed with lower levels of THC and higher levels of CBD. This means that people can smoke or ingest cannabis without having to get stoned but can still get the medicinal effects and function normally.