I am new to the j-pouch. I fought UC for a long time before finally giving up after steriods and remicade stopped working. My biggest problem since having the surgery is constant pouchitis. I have a lot of pain and a feeling like I need to go the bathroom. I could go at least 10-15 times and its pretty bad at nighttime too. I am on flagyl and its not really helping. Any advice?

I read about tincture of opium on the site and asked my doctor about it. I have been taking it for two weeks. It has reduced my trips to the bathroom from 20 times daily to about 7. I also take 500 mg of cipro every day. Maybe you could take the tincture along with your antibiotic?

Hi Caroline
I am in a similar situation, I only had my reversal 3 weeks ago and I now think I have pouchitis, I keep getting terrible spasms that take my breath in the pouch, and frequency and urgency and also a small amount of leakage. I had pouchitis before takedown but the symptoms are a little different this time. I saw my dr today who has given me antibiotics although Im not sure it is the right one's. She has told me if my pain and symptoms have not improved by Friday she will contact my surgeon and get my clinic aptmt brought forward. I also have a blood test 2moro. A couple of months ago I was in hospital with pouchitis and I was given, flagyl, ciprofloxacin and an enema called salofalk, these didnt totally take my symptoms away but greatly improved things. My surgeon first tried me on flagyl which on its own didnt do any good, but when the other meds where added in, then things got better. I hope you get some relief soon.
Take care
Shelly x

Yes Caroline,you may need more tha flagyl, I usually get cirpo as well, and try not to strain!!!!!!!!good luck.

For me cipro and flagyl work excellently taken in tandem, and xifaxin and augmentin also work. You may need to adjust the dosage of the antibiotic you are taking based on your symptoms and after discussion with your doctors. It is really trial and error treating pouchitis and you have to stay on top of it very aggressively. There are a number of potential treatments including but not limited to other antibiotics, probiotics, remicade and other drugs, and over the counter meds like Pepto Bismol. Keep trying things until you find the combination that works. Good luck.

Caroline, my situation is identical to yours, and frankly, no antibiotic seems to work long-term. Flagyl and doxycycline give me intolerable nausea. Cipro is the best--it works about two weeks if I take a big dose. Xifaxin helps a little bit, and so does entocort, but neither is a cure for me. I've trying Augmentin now and having total diarrhea, worse than with the pouchitis. Tincture of opium is definitely effective in reducing the number of poops per day, but gosh, am I sleepy! But I keep telling myself--and it's true--that I'm better off than with UC or with an ostomy! Good luck. I hope you find something that works for you. Try the opium.

Hey guys thanks for posting its great to hear other ppl experiences.

Well I've been to the doctor and I'm now on Cipro. Honestly I think already I'm feeling a difference but I didn't realise I had to take both antiobotics together ... omg I'm really going to be nauseated!! Is anyone on these antiobotic full time? and if so how are you dealing with the side effects? Also am I doing something wrong with this pouchitis? Any suggestions?

To Shelly, I had pouchitis without realising it for almost a month and a half. I was pretty ill. I told the surgeon I was having pain like muscle spasms (very like what you have described) and that I was constantly going to the bathroom and not able to really go. I hadn't a clue what was going on and neither did the surgeon - I was prescribed valium ... Anyways it turned out to be pouchitis. The relief I got on the antiobiotic was amazing. I made the mistake of stopping them and now I'm back at square one. But getting back to normal I hope

It is such a learning process, but thank again for the posts they are definitely very helpful.

C

I have been on rotating antibiotics to treat pouchitis for 15 years and I have no side effects, except that I developed a yeast infection from staying on cipro and flagyl too long. None of the antibiotics give me nausea but this, tendon problems and neuropathies are side effects that some people experience.

It's trial and error as to how your body will deal with and respond to any medication. I seem to have a very high tolerance level on just about all the antibiotics that one can take to treat pouchitis, and it's a good thing because I have chronic antibiotic-dependent pouchitis. If I go off antibiotics things get ugly within a week, so I pretty much have to take them continuously and have done so for 15 years.

This message has been edited. Last edited by: DJBHusky,

I have had a second bout with Poucjitis after my last Surgery in March and have had great releif with using the Tinture of Opium and the Cipro. I am amazed at how well I feel and am afriad as the meds are coming to an end. It is good to read that several of you have been taking these for many years with sucess. I do have a question about drinking though. I would like to have a Pina Colada in these summer months but am worried that it can hurt, what do you all say?

I have had alcohol while taking augmentin without too many problems, but there are warnings against mixing alcohol with other antibiotics, notably flagyl. You should carefully check the warnings and drug interactions with all antibiotics before using them.

You could also make youself a non-alcoholic pina colada.

Hi Caroline

I was admitted to hospital at the end of June due to suspected pouchitis before Id had may takedown, altho after a flexi sigmoid and biopsies they found inflammation but no pouchitis! I was given flagyl and cipro and these made a difference I had a 2 week course of each and was also given an enema called salofalk which also helped, these were enough to enable me to get my takedown 4 weeks ago, over the last week and a half I have again developed those symptoms, although my surgeon has been made aware by my gp, I yesterday saw a specialist nurse from the Gastro team, who spoke to one of the gastro consults and was again given cipro along with predsol suppositries ( got saturday) and they have also asked I do a sample as they want to check I do not have a bug, namely c diff. I am still getting spasms although they are not quite as painful as they were so I guess the suppositries maybe helping. I have a follow up in a fortnight and they have also said they will prescribe me Vsl#3 but only after I finish the 10 day course of antibiotics.
Im glad things are improving, lets hope things continue to improve for both of us.
Take care
Shelly x

Ded144,
yes have that Pina colada - I also queried the antibiotics labels with my specialist, one of them supposedly can elevate the alcohol - meaning you can get drunk more quickley - think it was the flagyl, but cant say I ever had any different feeling from drinking alcohol and taking medications. My main problems with the j pouch now and alcohol is that it can make your bm very liquidy - but sometimes it does and sometimes its doesnt - go figure - trial and error...cheers

Hey guys, I have another question. I'm on cypro for a week now and still have pain and a feeling like I need to go to the bathroom. This is only happening about an hour or two before I'm due to take the tablets again. I guess I need to go back to my doctor ... allergic. How long does it take these tablets to kick in?