I was on a week of 500MG 3 times a day, for assumed pouchitis, and the symptoms got better during for a few days and then went bad for a few etc. After that they've put on 250MG 3 times a day for 2 weeks. I'm not as bad as I was before I started taking it but still not over it.

Can you tell me the doses you have taken and if they changed your dose like this or some other way?
Original Post
Dr. Loftus has since taken me off of Flagyl, since my pouch scope did not show active pouchitis. The biopsies since came back as active ileiis which I think means a residual anount was left.

He said in the future that he will prescribe something other than Flagyl as I have neuropathy in my feet and a side effect of Flagyl can be neuropathy. I can't be prescribed Cipro as I contracted c.diff when I had my colon once when taking it.

There are consequences to take antibiotics unless they are absolutely necessary, in my case. There are many people on here who alternate the kind of antibiotics they take for that reason.
Thanks for asking Beckysmom,

The frequency is down because I'm taking a lot of the Loperamide he prescribed and the cuffitis is still rolling along. He's got me on Canasa at night and Anucort suppositories during the day. He is right the prescription Loperamide is working better than the OTC kind.

I'm to go back for another test to see if I have pelvic floor dysfunction as they couldn't get me in for a few days when I was ready to leave. The treatment for that is Biofeedback.

How's your daughter doing?
TE, your post reminded me about the peripheral neuropathy. I think you once said you had Sjogren's. I was just reading up on it today, as my rheumy is looking into it as a possible additional diagnosis for me. The back story is that I have severe dry eye syndrome (enough that Restasis was inadequate and wound up getting my tear ducts plugged), and yesterday when I went for a routine dental check-up, my dentist was somewhat alarmed that my gums and palate were sort of a purplish red and pitted. Not typical gingivitis, as my gum pockets were good. He asked if anyone ever told me I had autoimmune disease; ha, ha. Then I reminded him of the reasons I am on all these meds, and he went aha! Anyway, reported it to my rheumy and she is now looking into Sjogren's. I also reported to my GI. Hopefully, it is much ado about nothing.

Anyway, when reading about Sjogren's, I noticed that peripheral neuropathy is one of the complications. Did you know that? I sure didn't.
http://www.sjogrens.org/home/a...ns-syndrome/symptoms

Jan Smiler
Jan,
Sorry to hear about the possibility you might have Sjogren's. I have dry eye, and use Restasis, and dry mouth, which my dentist who also has crohns says is due to all the medications I take. At least 4 of them have dry mouth as a side effect. I'm trying to get off of one of them that I think is the main culprit but am not there yet.

I forget the test or when it was but I've been cleared and don't have Sjogren's.

I have neuropathy in my feet and my fibromyalgia has progressed to a disabling state. I've decided that along with my UC, thyroid and arthritis problems there is no room for further autoimmune diseases or syndromes in my body so am turning all away. Confused

I have been on Cypro for extended periods. Just gone onto Metronidazole ( Flagyl). Not too sure if everyone knows what these antibiotics are working on and how they improve pouchitis.?  Firstly. a question, has anyone had a J pouch fitted because of Cancer with no history of Colitis and then at a future date suffered from Colitis.? I doubt it to be true. Most Colitis is caused by the immune system seeing the friendly flora in our gut or pouch as injurious so creates an immune response, thus the inflammation. even at it's worst if a stool sample is taken during a  period of pouchitis  I doubt if anything in the sample would be sinister and or injurious. so we are by taking Flagyl using as the saying goes          ' Using a  sledge hammer to crack a nut' Note that the drug will dispose gonorrhea  with one or two tablets. So what the Drug is doing is in a round about way is giving the same results as Prednisolone killing that flora backs of the immune response just altering the other line of the equation. There are a new family of drugs that are seen as auto immune system moderators.  that should help. Even so, track back your family history. In my Family we have or have had in the past family members with,  Lupus, Rheumatoid Arthritis. Lichen Planus. Eczema, Arthurs Edema, Colitis, Ulcerative Colitis and MS. 

I can only take probiotics with Lac Acidophilus and Lac Rhamanosis, VSL3 gives me  a very bad response after about three days, when visits to the Loo end off being every hour. I have also found that when not on Antibiotics slowing the transit time of food to longer than maybe 6 hours creates problems so taking extra Lopiramide   or Di-hydrocodone to assist in a social visit, Back fires when the intestine re-awakens and  can actually re-start Pouchitis. I have found Lomotil to work far better than Lopiromide or Di-Hydrocodine in slowing down food transit the problem being it is now becoming a controlled drug as it appears it can be used as a pre-cursor for illegal drugs.. Overall and to be blunt. J Pouch system can be fine and is as I know from experience much better than an ileostomy   but it is not a panacea. When used with people with immune system irregularities  it can be worse than colitis more debilitating and more socially restricting.  the other option is not good. we are all here to tell the tale, we wake in the morning...breathing, and that is good. Pragmatic optimism rules.

Graham Field UK

Update - This is an old thread. I have since had my j-pouch removed due to numerous problems. I now have a permanent ileostomy and a better quality of life than with my sick j-pouch. I was scared to get an ileo as my temp one was horrible. But I was so sick I thought even that nasty temp ileo would be better. I know we all strive to keep our j-pouches but it isn't the end of the world if we need to have them removed.

 

Yes, I absolutely do not believe that the J pouch is the panacea that the Surgeons tell us it is. once fitted we report not to them but the Gastro specialist , who picks up the problems and the Stoma nurse. both of these expect us the person with a worse life style and more discomfort and problems than the Colitis. I do believe that only people without any indication of auto immune problems should be given a J pouch. My Temporary Ileostomy was with me for 15 months because of problems at the hospital it had been fitted on a natural body crease so the inner seal leacke acidic semi digested output onto the skin around the stoma it was horrible and needed serious management also the output is pretty much liquid ...even more difficult to seal . it is only the memory of that period stopping me just getting the J pouch out.  one of the other problems with antibiotics is the constant thrush type soreness. between the cuff and your rear end. at least we are still here to tell the tale!!!

Hello LABLOVER. I also feel a little odd after a few weeks on the drug, In fact I would say, impatient and a little too ready to snap back verbally, I try to ease back and not set goals too high and be pragmatic. When my wife found out I was coming off Cipro and going onto Metronidazol she was not too happy, I now must take great care  to accept any sort of negative comment from her as if I respond she says the drug makes me impossible to live with. Seriously I now know the affect, so do ensure I am a pussy cat at all times. I had a bout of double vision two days ago. Overall though my pouchitis is much better I do for some reason have a ravenous appetite. I will ask to reduce the dose to 200mg three times a day from 400 mg. it is a powerful drug being used to suppress what in most cases is the friendly flora that live in the lower digestive tract, I do not think the medical people really understand the way the Antibiotic works in the case of Pouchitis only that it gets results.

I have asked to go back on either Sulfasalizine  or Mesalazine. orally. Can I ask What dose your Husband was taking.? and how long before he needed to come off it. or even if he has managed to maintain a very long or continuous use?

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