I came down with UC at 30 yrs old. Struggled off and on for 28 years. Then went on 6mp for 7 yrs with only constipation as side effect. Then dysplasia showed up and had colon and rectum removed 9months ago and takedown 7 months ago. . I am currently being treated for pouchitis based on symptoms on frequent night BM and lots of pressure to have bm. Cipro worked for 2 weeks then symptoms came back. Been on Cipro and flagyl 500 mg twice a day. Not a lot of improvement. Going to bathroom 8-10 times a day. Gastro dr is doing scope in 2 weeks to see what’s going on . I’m also using Metamucil wafers which does work most of the time. I seem to have recurring diarrhea every 2-3 days. Then it gets better.I’m very active in gym and ready to get back to playing golf when I get this under control. I’m very careful what I eat.No sugar or sugar subs. Very limited diet. Drink plenty of water. Have lost a total of 45#s since this all began. . Surgeon checked for strictures and felt none but noticed I wasn’t empty,which I told him it never empty’s. I’ll go 4 times in a row. Any suggestions?
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If you can’t empty your pouch then its effective capacity will be reduced by whatever residue is left after using the toilet. It will fill up more quickly and frequently. It’s hard to know what’s keeping you from emptying - the simplest thing to try are the maneuvers one witty person here called “bathroom yoga.” Most of them seem to involve bending forward at the waist (sitting or standing), but other contortions have been described. Other possibilities include things like excessive anal sphincter pressure (measured with anal manometry), pelvic floor dysfunction (treated with pelvic floor PT), pouch outlet stricture (the gastroenterologist probably would have noticed that on physical exam), and pouch prolapse (often requires a defecogram to detect). Good luck!
Thank you Scott. The sphincter pressure may be my culprit. Some of my BMs are flat looking instead of tubular. I do have to strain to get it moving. I will talk to gastro Dr about this.
Bill,
Our histories are quite similar, though I was diagnosed in early 20s and managed 40 years before the high grade dysplasia. Colectomy with mucosectomy March 2021 and takedown 9 months ago.
I also struggled with incomplete evacuation, frequency, straining, seepage and night time BMs. Used Cipro and Flagyl with improvement but recurring symptoms when off them. I maintained a strictly limited diet also.
I did not suspect pouchitis, because I had no abdominal pain. Before I realized the mucosal cuff been had removed at surgery, I thought I had cuffitis.
Ultimately, the cause of my issues was mucosal prolapse, one of the possible culprits Scott listed.
Having all mucosa stripped, while it eliminated the possibility of "cuffitis", increases risk of leaking. I believe that is a factor for me.
The good news is that I am doing well now following a banding procedure to tighten the prolapsed tissue that interfered with evacuation. I'm taking Rfiaximin as a maintenance antibiotic (not systemically absorbed) to avoid bacterial overgrowth in any remaining "floppy" areas of the pouch, and I added psyllium husk powder supplement (the stuff Metamucil is made of) to improve consistency and absorb excess fluids which has solved the leaking.
(Some in this forum have noted that the dissolvable Metamucil / psyllium husk works better than wafers. I've not compared.)
The prolapse can be detected by some endoscopists, but the barium defecogram is the definitive diagnosis as Scott noted. That's worth considering if you've got a gastroenterologist skilled at the banding procedure. But there are not many who do this and at least mine wanted the diagnostic test done in his radiology department
in addition to the bathroom positional tricks Scott mentioned, I've learned another. First, if you've got prolapse, straining makes defecation more difficult. So concentrating on relaxing is best. But while relaxing the anal sphincter, filling the abdomen with air on inhaling and very slowly exhaling while pressing knees together pulls the abdominal muscles tight and pelvic floor up and will gently help with evacuating. I learned this from PT for an unrelated injury, but it's excellent for pouch emptying.
Thank you so much for you info. I am having a pouchoscopy in 2 weeks. My gastro Dr is very qualified and I am going to give her all these suggestions at that time. I have been miserable lately. Hoping better days are ahead.
Hang in there. I spent many months contemplating an eventual reversal. But things did get better. Though not perfect, I continue to improve. You will too.
My pouchoscopy went well. Dr said it’s one of the healthiest pouches she has seen. No pouchitis. No inflammation. I’m currently going thru pelvic pt. I recently had a prostate biopsy. They gave me Tylenol with codeine. I went 12-14 hrs without bm. Is this something jpouchers take to slow things down? If so, I would assume my GI can prescribe it. I get my results from biopsy in a couple days. I really need it to be good news.
Some J-pouchers do use opiates like codeine to slow things down. IMO it’s best to try to optimize Imodium or Lomotil before doing that. If one of those can give you satisfactory results that’s a simpler and lower risk path.