This sounds to me like it might be IPS (irritable pouch syndrome). I don't know all of the treatment options, but I've seen amitriptyline suggested, as well as B&O suppositories. I also wonder if antispasmodics might be worth a try.

Good luck!

I've heard of some people taking Bentyl with a lot of success for this sort of thing.

Bentyl and levsin are the anti-spasmodics to take to treat IPS or "spasmodic pouch", as my surgeon called it. I also took donnatal which had less side effects, although it may have been taken off the market.

I had it really bad the first two years after takedown, but it was completely controlled by taking bentyl or levsin 45 minutes before meals. These drugs can make you feel a little loopy, and the donnatal had less side effects, but like I said not sure if it is still available for prescription.

Interesting feedback all. I appreciate it. The thing is neither Mayo or The Iowa Clinic hasn't said anything about IPS but I will bring it up. I should give more information about my situation. Had UC for 20+ years then developed high grade flat dysplasia so out came the colon in November 2012. Takedown May 2013. Issues with multiple BM's since although Flagyl/Cipro helped a lot June-Nov 2013 until my hands/feet went numb. After many various antibiotics I went to Mayo for physical therapy this past May for a week. Didn't help...even with me practicing the techniques at home. Dr. suggested last week about maybe trying some UC drugs before discussing alternatives with surgeon. At my wits end as I still wear Depends to bed at night and am up at least 10x/night. Still have accidents day and night.

I had my takedown March 2013. In October, I was still having 20-30 bm/day and frequent accidents. I was ready to have the pouch removed, but we tried humira as a last resort and I had a lot of improvement. I never did get to the 6-10 range I was hoping for and I still had the occasional accident, but there was definite improvement 'til I got Cdiff a few months ago and things have kinda been backsliding. But I think its worth a try if other things aren't working.
I also had some trouble with flagyl on a long-term basis, but found I could take 1 500mg dose and it would help for the next 7-10 days without giving me the negative side effects.
Good luck!

As I have just written in a different debate - try Citridal, it really works for me.

Another thought is stool transplant. I know it sounds pretty groose, but a lot of doctors here in Denmark has begun experimenting with it because they have seen that it can actually help in some cases. I wish they had tried it on me when I had colitis.

My Iowa GI prescribed amitriptyline yesterday. I've taken three since yesterday afternoon but so far no changes. Since midnight I've had 13 BM's in 10 hours (yesterday from 5am-midnight I had 31). Still early, I know, but I hope it makes even a little bit of difference. Haven't heard back from Mayo yet but will talk to them Monday. I'm keeping the faith but am also coming around to accepting the fact that I'll probably need a reversal.

When amitriptyline works it definitely takes longer than a day or two to yield results. It's hard to be patient under such circumstances, but patience is very valuable to you. It may even help you try the next thing when whatever treatment you've given a reasonable amount of time hasn't worked.

Urbhusker,
I really feel for you as I have had terrible pouchitis since being diagnosed with lymphoma 2.5 years ago. In the bathroom every 1.5-2 hours. I was on 2 cipro and 2 flagil for a year or so ,then on 1 of each for quite a while and then after the SCD diet down to 1 cipro a day and now with the oregano oil NO antibiotic in 3 weeks!I am doing oregano oil drops, 4 drops 3X day of the concentrated type that doterra or joy of the mountains make. I wish you the very best and hope this will help.

Well the amitriptyline didn't work at all so I'm back on Augmentin, which has seemed to have squelched the flare-up a little. Still going 15-20x/day. Interesting Monday evening into Wednesday evening I was "clogged". Couldn't get anything out but the urges/frequency kept coming. Took some Miralax (a serving early afternoon and before bed) and two Duculax (Wednesday morning. Had two accidents while sleeping and Thursday my system started to evacuate again. We'll see how the next few days go but am leaning towards a surgery consult. Since midnight I've had 12 movements and it's now 9am here.
I've asked both my GI Docs about some of the suggestions posed on this board. Of course they aren't too keen on some of them. I will try the oregano drops and other suggestions on my own. Thanks!

Have our GI specialists offered Codeine to help slow your system down. I don't think you're getting clogged as you say - most of our with pouches have the opposite. If you're going to the bathroom alot, you probably shouldn't take anything that helps you to go. I am sorry to hear the struggles you are having. If you're not getting help from your current docs, find another one. I can't believe the Mayo hasn't helped you. Good luck.

I've been on opium which helped (along with 8 Immodiums plus Pepto) somewhat but I did get impacted on all those meds. NOw I'm just on Augmentin and Konsyl. Have a Mayo appt Sept 23-24 for another scope and then surgical consult. Due to testing back in March at Mayo Dr thinks I have a "dysfunctional pouch". I failed the balloon test (couldn't push it out at all) and the scope I had that day in March the attending Dr. noted that as they were pumping fluids in they came right back out meaning no muscle control. Anyway, the consult will be to discuss removing the J-Pouch and going external again.

Amitriptyline is an anti-depressant. Have you tried anti-spasmodics before meals as previously discussed?

Yes I did for about a week with no noticeable change unfortunately. Dr took me off it after about 8 days I think.

can a pouch be redone if it is dysfunctional?

i really feel your pain when i have my outbreaks of going and going and pain from doing so its maddening and feel willing to do most anything to stop it..but with ongoing rotation antibiotics it gets under control which is not your case..then i can get my thoughts together as to next step..you have not had that luxury..

just wondering if a consult with cleveland clinic dr. shen might not be an idea considering..only because if it were me before removal i would want to think i gave it a real good try with one of the best in field..not saying your drs aren`t right but thats just me..

FYI
Amitriptyline is an antidepressant that is useful for many things including slowing the j-pouch down and for migraine headaches. I am taking it as it is helping me on all 3 fronts. So says my Mayo Neurologist, GI and Psych. nurse practitioner. I have eliminated 2 medications by using amitriptyline for 3 of my health problems.

urbhusker,
I wish there was something I knew that could help you. My Des Moines GI sent me to Mayo when he said he was a generalist and I needed a specialist. I still have a dysfunctional pouch with chronic cuffitis and pouchitis but it is treatable with canasa suppositories and rotating antibiotics. I feel we are at the or one of the best clinics for j-pouches there is. We don't like the results of our tests but at least they make our problems understandable.

So sorry you are suffering and for the decisions you face. I wish you a healthy future.

Was at Mayo Tuesday & Wednesday for a scope and surgical consult. Scope came back showing mild pouchitis but otherwise looked very healthy. The biopsies returned nothing of significance. I will note while being administered the enema the water came right back out as it was going in (was able to hold maybe 200ml). Same with the scope....even though I had 5 BM's prior to the scope I still had a lot of stool in me so the Dr. had to irrigate my pouch while scoping...and that water, along with stool, came flowing out (embarrassing). So basically my muscles are not working as they should and I even went through a week of supervised therapy at Mayo (along with self therapy for weeks afterwards) in late May.

Wednesday I met with my GI Dr. (Kisiel) and my surgeon (Devine). I've tried numerous antibiotics for the pouchitis and they work to keep it down but eventually wane. Of course the antibiotics won't help muscles strengthen. The final suggestion was what I expected - take down of the J-Pouch and go external again. I have to say that's not what I want but I think about how my quality of life is right now - frequency up to 30x/day, always having to be sure a bathroom is near by, etc - isn't a great quality. Never mind I'm up 4-7x/night too. I have an appointment to see my surgeon here in Des Moines (Page) October 6th to discuss reversal. I feel this may be the best course of action for my situation right now. Am I mistaken?

If you've really tried *everything* and can't get your quality of life to an acceptable place, that's when (IMO) it's time to call the pouch a failure. Have you tried everything? Maximum use of various thickeners (Metamucil, Benefiber, Citrucel) and slowers (Lomotil, Imodium)? I'm asking the question this way because Benefiber and Imodium work poorly for me, but Metamucil and Lomotil do the trick. I still need antibiotics, and I now use a combination (Cipro/Flagyl) since they stopped working individually. "Trying everything" turns out to be a lot of possible combinations of treatments. You may (understandably) run out of patience/optimism before you really run out of options.

My understanding is that Amitriptyline, like most antidepressants, requires several weeks to take effect, since it is the cumulative effect of the drug in your system, rather than a drug you get immediate effect from taking. Most doctors won't consider it a failure unless you've tried it for at the very least for 2-4 weeks with absolutely no change. Perhaps another, longer trial would be warranted to see if it helps you? Just a suggestion. I know 4+ weeks is a long time to wait when you need relief. I hope you can get this sorted out. Reversal is a last resort so you'd want to make sure you've given everything a fair go, unless you are really at wits end and want to go back to an ileostomy.

I also agree with Scott; a combination of drugs such as Amitriptyline, rotating antibiotics, imodium, and/or an antispasmodic like Buscopan might be helpful before you finally decide to throw in the towel.

Best wishes that you get this sorted!

Every antibiotic I've tried eventually lost their potency and even when on them I still had the constant urge to go. The best was when I was on Flagyl summer/Fall 2013 but I became allergic to flagyl in November 2013 (feet are still numb and very sensitive to the touch). Been taking Konsyl (1TB 2x/day) for well over a year now and that bulks up the stools like it should. I was on opium for many months (along with Imodium) and that slowed my system down a bit but I became impacted multiple times. I still pop a couple Imodium every now and again but am careful not to do it too often as it stops things from coming out but doesn't stop the frequency of urges.

I'll ask about Amitriptyline again. I know the short couple weeks I was on it didn't helped....seemed to have hurt actually. I just know what the Dr's have told me concerning my muscles and rectum....that they aren't doing what they should be doing. Trust me I don't want to go back to an ileostomy but I also know I cannot continue to let my pouch control my life. It's affecting everything I do, affecting my wife/son, affecting who I am, etc.

I am dealing with severe pouchitis. Antibiotics that worked in the past don't work anymore and I also now have the numbness in my toes. After my last scope and the amount of inflammation, along with having a fistula, my dr is recommending Remicade. We will see...I start in a week. Good luck to you. I have also had to buy Depends to wear to work since I am running to the bathroom every 30-60 minutes and fearful I won't make it. Humiliating!

Meh, I'm used to the Depends....buy the Real Fit ones. No one can tell I am wearing them. I'm also going to ask about Remicade but my issues are bad muscle function so not sure any antibiotic will help.

Dr. Page is my surgeon too. I'm sorry you need to see him about having it removed. He trained at the Cleveland Clinic but I wonder how many times he has removed j-pouches. I've heard that that operation is more difficult that constructing the j-pouch.

I'd rather have my surgeries here than in Rochester. It's home and not 3-4 hours away plus if there are complications Dr. Page is a phone call away. He has good partners too. The care provided by medical staff at Methodist was the best. I don't know if that is where you had your surgery or not. I'd just want to know how much experience he has removing j-pouches before deciding if he should do it or not.

I'm talking to Page to see if I can have it done here in Des Moines vs Rochester. Already have dates to choose from at mayo but with the expected week in the hospital I don't want to spend $1000 on hotel rooms (my colon surgery and j pouch surgery was done at mayo).
Now I'm investigating BCIR. Unfortunately it appears I have two choices...LA or Florida. Not sure if we can swing that with an 11 year old son and 17 year old exchange student.

BCIR would be a better option in my opinion. Could you go back to an ostomy and leave your j-pouch to rest until you can arrange to look into the BCIR surgery? There are people who rest their j-pouches and then reconnect them. Then you could rest yours until it was turned into a BCIR pouch or you decide to remove it permanently. There is at least one person on here that went to an ostomy and left her j-pouch in several years ago. That sounds like something Dr. Page could do locally.

I know what you mean about hotel rooms. I was at Mayo Mon-Wed last week too. My GI there referred me to the Fibromyalgia & Chronic Fatigue Clinic plus I saw him for a follow-up appointment. I met another patient that stayed at a place for $60 a night! I asked her where and she said it was the "Guest House". I need to look that up in the future.

My concern with leaving the J-Pouch and rectum in is that when I had the temp ostomy bag I frequently had bad days where I was on the toilet a lot due to uncontrollable mucus (in hindsight that should have been a warning sign) discharge. But Dr. Page mentioned that to me last year....let the pouch rest and possibly reconnect at a later date.
I really do not think BCIR is a viable option due to location (and two weeks in hospital) unfortunately. But there is no reason why I cannot get an ostomy and look at BCIR down the road (couple years maybe) once our son is a bit older and we do not have an exchange student to worry about. Des Moines to LA or FLA is quite a distance plus the amount of time recuperating in the hospital (I read it's 16-20 days?) is just too much. I emailed the clinic in FLA last night and look forward to a response later next week.
At Rochester we usually stay at Towneplace Suites - Mayo rate of $99 for a one bedroom suite plus $10 voucher to spend on goodies in their food store. Pretty good deal for Rochester! But one week there is still over $1000 plus food!

If you let your pouch rest you could also treat it with antibiotics without having waste running through it and that should, in theory, clear up any problems. I was in the hospital 16 days with my first surgery because I kept getting dehydrated. That is a long time.

If I ever need to stay longer than the usual 2-3 nights I need to check out where you stay. We paid $112 Mayo rate per for a studio King suite last week with a good hot breakfast buffet at Aspen Suites. I usually don't get to eat breakfast when I'm there for j-pouch tests It's by St. Mary's hospital as that's were my appointments were. I usually stay in a place connected to the subway so I can go back to the room in-between appts.