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Hello.  I had my takedown 2 1/2 years ago.  I have had the usual issues with burning, tenesmus, chronic fissures with itching. I have had pouchitis too often over the last year necessitating Flagyl which worked a number of times, but did not work the last time.  Back in September something changed. I had  (for lack of better words)an odd, fluttering and tight feeling from umbilicus across the left and down almost to my pubic bone. I had a pouchoscopy which looked normal at the end of September. I told my surgeon that my symptoms initiated higher than the pouch. That was not assessed further. In October, my stool pattern changed. I had been having 6 to 10 BMs/day; soft small pieces.  Things changed to having marked bloating and fullness with very large formed stool every day (looks like they came out of a colon) the same amount of times 6 to 10. I have no idea how I can even make that much stool. Very painful and uncomfortable to even walk. My diet is the same. My meds are Loperamide 3 daily, Cortef 25 mg daily for secondary Addison's and Metamucil 1 tsp 3 times/day. I had a pouchoscopy again 10 days ago.  The blind loop was elongated and dilated with bacterial overgrowth at the tip of the J. There was mild inflammation throughout the rest. Was given Flagyl 500 mg. b.i.d.; higher than my usual dose. I had terrible side effects and after talking to nurse, abandoned it after 7 days. Again, nothing was addressed re my other higher up symptoms.  Any thoughts would be helpful. Thanks.

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If it were me, I would do one thing at a time. Try reducing the loperamide 1pill at a time. If that is not adequate, reduce the Metamucil gradually. Since you are prone to fissures, you probably need to stay on some Metamucil.

If you think you ahve bacterial overgrowth, you may want to try Cipro, with or without the Flagyl.

Good luck.

Jan

Thank you Jan for your reply. I have cut my Loperamide down further.  My Metamucil was always just 1 level teaspoon t.i.d., but now I have brought that down to half the quantity. Still harder larger drier stool.  I told my surgeon in September that I feel my stool is getting "hooked up" for a time behind my old stoma, absorbing liquid by sitting static tooting and then pushing through. He paid little if any attention.  My whole belly is crampy; much different than before. To add to this, I have now had a  gastroscopy last week by GI. Gastritis and duodenitis were found with biopsies pending. She is booking a CT enteroclysis to look for strictures, obstruction, etc.  I pray something comes to light soon. Every day is misery and I keep trying to do the usual routine. I have read many of your responses and appreciate your intelligence and advice.

Well, that scraps Cipro then. Septra might work (but has sulfa), as may any of the cephalosporins, or other broad spectrum antibiotics. If you are having partial chronic obstructions the associated inflammation will not subside unless things get moving. It can take a week or more for the loperamide to completely clear your system. Make sure to keep your fluids up (keep your urine dilute). Massaging your abdomen where the pain is centered might help break things up.

Jan

Have you tried some peppermint tea? Sometimes that clears me out.Ive cut my phsillium husk back to one teaspoon a day as I got blocked up over the new year and my stools were hard but now they are more watery.if you read on the internet the side effects of to much phsillium husk it says bloating,gas ,cramps and constipation and can cause blockages if not enough fluid is taken.

Last edited by Former Member

Thank you all for your input to help my output. Lol. Trying to keep some humor.  To Jan, I have stopped my Loperamide as of yesterday, so we'll see what happens. I am sticking to half tsp Metamucil with each meal or the acid will kill my fissures. I have had blood in my urine for 2 months and had an u/s 4 days ago. The urinary retention compounds the abdominal pressure . There was an initial UTI for which I was given Amoxicillin. I had the side benefit of helping my bowel, to a degree. I know it is not an antibiotic of choice for bowel inflammation.  Allergic to Sulfa as well.  I note CHook your info on effects of Metamucil and I agree that you get the good with the bad. Thanks Lauren as well as you mentioned similar. 

I will be back to you with update after more tests and results.  My daily living is markedly reduced for 3 months now. I am not depressed, but sad.  Pain occasionally is fine, but daily is too incapacitating.

Thanks Jan. My mid abdominal pain, pelvic cramping and nausea have been so bad for weeks now. The whole change in dysfunction has been 3 months. I am 99% that I have a stricture in the area behind the old stoma. GI doc is throwing around the Crohn's word again. I was diagnosed with Crohn's in 2008. On resection of my Colin, the surgeon said I had UC.  Of note, my stoma was on the left for my loop ileostomy; somewhat unusual. I had a colostomy there from 6 months prior from a community hospital surgeon as he thought taking just that part of colon would suffice as my major inflammation was left sided. It did not.  I agree with Amoxicillin and will look into a psyllium alternative.  For now, I am a step away from taking myself to emerg.  I have terrible sleep as the pain deprives me. My surgeon is elusive at best and I feel our relationship has broken down. There are only 3 or 4 surgeons in Ontario that do Jpouch procedures. Mt. Sinai and St. Mike's.  My brain is as tired as my body now. Appreciate all of your suggestions Jan. Most helpful.

@GEB56 posted:

Thank you all for your input to help my output. Lol. Trying to keep some humor.  To Jan, I have stopped my Loperamide as of yesterday, so we'll see what happens. I am sticking to half tsp Metamucil with each meal or the acid will kill my fissures. I have had blood in my urine for 2 months and had an u/s 4 days ago. The urinary retention compounds the abdominal pressure . There was an initial UTI for which I was given Amoxicillin. I had the side benefit of helping my bowel, to a degree. I know it is not an antibiotic of choice for bowel inflammation.  Allergic to Sulfa as well.  I note CHook your info on effects of Metamucil and I agree that you get the good with the bad. Thanks Lauren as well as you mentioned similar.

I will be back to you with update after more tests and results.  My daily living is markedly reduced for 3 months now. I am not depressed, but sad.  Pain occasionally is fine, but daily is too incapacitating.

You are welcome! I hope things get better and keep us updated

I 100% agree kta!  My husband and I have been trying to figure out the ropes on how to be referred for a second opinion.  My surgeon seems uninterested in doing any tests.  Unfortunately, only 2 hospitals in Toronto do Jpouches and, I believe, only 3 surgeons. I am sure one of my problems is pouch prolapse.  I make suggestions, but am not heard. I am well versed about my medical condition. Exams/pouchoscopies are always lying down.  The pressure in my anal canal and pelvic/genitourinary area is extreme and worsens through the day with gravity. I am 64, menopausal and on low dose steroids for life from secondary Addison's. All 3 are easy contributors to weakened connective tissue.   As I said, that is only one issue that is painful. Two, I believe is a stricture or partial blockage of some kind behind the old ostomy site. This is where extreme mid abdominal pain strikes 2 hours after every meal. This intensity lasts for an hour and I moan and use a heating pad. I only pass small bits of dark acidic mush at this time. Then I feel some relief and my next BM is light and well formed (too well formed and dry; like from a colon).  The mechanics are just not working right. Sorry for the long spiel.  Sometimes, when you get going, there is no stopping. I feel have no power at the moment and my quality of life is terrible. I am typically a very active person.



Thanks for your help and for listening.

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