For your husband’s GI to say he has a non-functioning pouch is like your mechanic saying that you have a non-functioning car. Did this doctor give any explanation as to what could be wrong with the pouch? Did he perform an endoscopic examination of it? If he was prescribed only the one antibiotic, serious consideration should be given to trying different ones such as Flagyl, Rifaximin and Augmentin. Sometimes a combination of two works best and rotation of antibiotics should also be considered. Some people have had positive results with probiotics such as VSL #3 and changes in diet. I would certainly try different non-surgical treatments before consenting to major surgery.

Not being a doctor, I am reluctant to criticize the abilities or competence of your husband’s GI. It may well be time to consult with a doctor who has extensive experience with j pouches and their various problems (the Cleveland Clinic would be a good possibility). It is so easy for one to say, “just put a bag on it”, especially when your husband is against having one. Additional information about your husband’s j pouch problems would encourage other posters to make additional suggestions. If, after getting other medical opinions and trying other treatments it is decided that the j pouch must go, you could look into the k pouch and closely related BCIR that do not require an external bag. Both of these procedures have a high success rate and high patient satisfaction and would be performed at the same time the j pouch is removed. I wish the best to both you and your husband in attaining a solution that improves the quality of his life.

Bill

Well, gee. It seems odd to never try Flagyl or rifaximin or a combination before concluding this is a failed pouch and throw in the towel. Bacterial resistance is common when you take one antibiotic long term. This is the reason behind rotating antibiotics when you have antibiotic dependent pouchitis. Other options are typical UC meds, including immune modulators and biologics. If his GI is unable or unwilling to look at other options, it is probably time for another opinion.

Jan

RHF,

I am so sorry, I know how hard it is when doctors throw in the towel without offering viable alternatives. You feel like they have just given up on you.

That is when I give up on them and change doctors.

I second everything that Jan and Bill have said but would add that he may wish to keep a food and activity journal to track how his body reacts to certain foods, drinks, meds and physical activities...it may also give him windows into when is the best or worst time to go out and do things and when he should stay put.

For other (k )pouch related reasons I had to reorganize my eating habits...In the mornings I stick to fluids (in my case, coffee, juice, water & meds), noon & snack are soft foods like banana & yoghurt. I do not eat 'real' food until evening when I am safely at home. If I need to go out at night for a meal I either plan to come home strait away or eat nothing but animal proteins like chicken or fish (that is what works for my pouch, not everone elses) ...or I organize the movie first and the meal afterwards...It is the balance that allows me to live & work outside of my house and works for me...he may have to rethink how he eats and when to give himself more freedom. I know that it is horrible to think like that but for some of us it is a trade-off that we must do.

I have also found that not mixing proteins and carbs makes my digestion easier to manage and gives me the upper hand.

I still believe that getting on the right antibiotic and using probiotics is the first step but this can be a little extra aide in giving him his life back.

Thanks to all 3 who replied. His Doc does do endo. exams, and he says he doesn't see evidence of pouchitis. This is probably why another antibiotic wasn't prescribed. It would be risky for him to take flagyl anyway though because he drinks alcohol.

RHF passes small amounts VERY frequently. This increases the amount of times he must clean up, increasing the pain and extreme burning. Could this suggest a stricture somewhere in the pouch? I asked at his last appt, the Doc wasn't very interested in exploring that idea. RHF eats little, because getting rid of it is so very painful. His blood count is low (Hgb = 9.5) from poor eating and maybe a bit of bleeding over time. He's in rough shape physically, and about to give up emotionally. It's been a long downhill slide for him.

I would definitely have your husband examined by a doctor who has lots of experience in dealing with j pouch problems that his current GI is unable to deal with. I would not rule out a trip to either the Mayo Clinic or Cleveland Clinic where he could receive a complete physical examination that covers all of the physical and emotional problems he is experiencing. The consumption of alcohol could be adding to his “pouch” problems, plus it does nothing for improving nutrition. Has he tried Metamucil or Lomotil to address the frequency and liquidity issues? There are a number of protective barrier creams that could help with the butt burn and the use of a bidet (there are relatively inexpensive ones that replace the toilet seat) that should make his bottom more comfortable. Sharon presents some excellent suggestions about food intake and eating habits. If he is to reverse the downward spiral, he must improve his diet and be more active physically.

If he had a pouch stricture, it would be evident on the scope exam. Maybe he has undiagnosed fissures, as they are in the anal canal and are often missed by exams by scope. They cause extreme pain with defecation and also cause small bowel movements due to spasms of the sphincters.

Not eating is not a good plan!

There are other antibiotics to try (he can have bacterial overgrowth without pouchitis). As an aside, I have no problems at all drinking alcohol while taking Flagyl, and enjoy wine with my dinner and even spirits. That said, I am not recommending it, as he could have an Antibuse type reaction.  It should be done with caution with only small amounts of alcohol at first to find out if there is a reaction. He'd have to be willing to not imbibe if there was a reaction.

Jan

Thanks again for helpful and compassionate suggestions. To BillV: he has tried many creams and ointments, including a custom compounded one containing amitryptylene, flagyl, lidocaine, diclofenac, nifedipine. The extreme pain continues, though. To Jan: A fissure may be what he has. Isn't cholestyramine supposed to bind some of the acid and help de-acidify the stool he passes? He takes that too. I should mention here that he can't get a pain med prescription from his PCC or GI due to history of alcohol abuse.  I think we need to go to Cleveland soon, before another visit to ER for 10+ pain (lasting 4+ hours) causes his local GI to deliver an Ileostomy ultimatum. Do you folks recommend a surgeon or other? Anyone in particular?

Oral pain meds don't work well for anal fissures. Topical lidocaine might help, but does not heal the fissure. Cholestramine does bind with the bile acids and can help with the pain that way, but also does not heal it. Warm sitz baths help improve the circulation and aids healing. The next step would be Botox injections, which mimic a sphincterotomy procedure, but it wears off after 3 months so it is less risky. 

If all else fails, a temporary ileostomy might provide enough rest for this to heal. It is possible that this is perianal Crohn's, but I would think his doctor would have identified it by now. Another good reason to get a second opinion.

Here is a good link about fissures:

http://www.mayoclinic.org/dise...-causes/dxc-20168232

jan

Jan - when caring for RHF during his pain episodes, you seem to be correct about pain meds not being very effective. He got a small prescription for some (5 tabs) when he was discharged from his last hospital stay 3 weeks ago. He has had severe pain since then, took a tablet, and did not get much relief. Whatever the condition is, it needs to be diagnosed and treated.

Bill, Jan and SKN: Called Cleveland Clinic, got an appointment for exam and evaluation with Dr. Shen. We are hoping that some intervention will provide him with some pain-free days. He certainly needs them. Thanks for the encouragement and common-sense advice.

If Dr. Shen can't sort this out, then there isn't much else to do.

Jan