It seems like I have had Pouchitis for a long time. Its going on 6 weeks. I have an appt tonight and am on Xifaxan but this is exhausting me.

Does anyone have any ideas what I can do to manage this? Should I just be on a liquid diet and have nothing else?

Rocket
Original Post
I have been treating pouchitis for 17 years with antibiotics. It responds to the treatment and is kept in a "simmering state", meaning it is there and never fully goes away but is kept in check. If I am off antibiotics for a week my sypmtoms deteriorate rapidly to the point where things are not tolerable.

Some pouchitis cases can be treated once or twice with antibiotics, some require chronic treatment. In my case 17 years of documented inflammation in my pouch but I still have the pouch for 20 years now.

I rotate antibiotics: cipro/flagyl, xifaxin, augmentin, usually 3 weeks of each but I am reducing now to a rotation every week.

It sounds to me like xifaxin may not be working for you. You may need to try other antibiotics. Cipro and flagyl in tandem are my most effective antibiotic "cocktail".
Rocket,

In my experience and in the experience of a doctor with whom I spoke, Xifaxan isn't effective for many people who have active pouchitis. Of course, there are some who derive a benefit, but Xifaxan seems to work best in a maintenance capacity; in other words, it helps to prevent pouchitis from returning once it is under control.

I agree with DJB that you may need to take another antibiotic. Cipro and/or Flagyl are usually the first ones tried. Bactrim has been the most effective for me. It really depends on the individual.

There are many routes available to get that pouchitis under control.

Let us know how your appointment went if you'd like.
Saw my doctor this evening and he put me on Ciprofloxacin (Cipro) - 500 mg 2 tab, 2 x a day and Metronidazole (Generic for Flagyl) 500 mg 1 tab 3 x a day. I have a 2 week supply with one refill. Still very inflamed. He also wants me to use the Canasa Suppositories but my butt is so sore it needs a break from going to the bathroom and to stick something in is going to be very painful. I put one in this morning but had to use the bathroom an hour later. I guess I will bite tonight and do it anyway. The exam was very painful.

I am so tired I told my manager before I left that I would not be in to work tomorrow. I had trouble keeping my eyes open while driving home from Trenton to Flemington. Now its late and I can't sleep. My butt is killing me and Rite Aid did not have and Calmoseptine.

The longer I am on meds, the longer I have to wait to begin to do what my GI/Nutrionist suggest I do which is to start with Probiotics.

I hope the meds work because I am supposed to go on vacation with my son beginning Aug 12 but am not feeling good to do anything.

Thanks to all for your concern.

Rocket
Rocket,

That is a fairly high dosage of cipro/flagyl and hopefully it will do the job. Normally you should start feeling relief within 2-3 days. You may want to take probiotics between antibiotic dosages although optimally and especially at that dosage of antibiotics, probiotics are more likely to be effective when you are off antibiotics.

If you feel relief from cipro/flagyl I would ask for a refill so that you can stay on the antibiotics through your scheduled vacation with your son, as there is a chance that the symptoms will come back once you go off the antibiotics. Good luck.
Rocket,

It seems like the doc is really throwing a lot at you at once. To go from just Xifaxan to Cipro/Flagyl/Canasa. If it were me, I would just start with the Cipro and see what happens. People do respond well to the Cipro/Flagyl combo, but I thought that was only needed if one didn't work on it's one. Hope you start feeling better soon!!
Last year when I had a very bad case of Pouchitis, my GI put me on Cipro and Flagyl and it took awhile to become effective. It finally did so but I did have to refill my script. I have to see him in 2 weeks. My current script calls for one refill.

I stood home today and got much needed rest. I had a decent day with not using the bathroom so much. But was tired. At breakfast, an hour later went back to bed to sleep. Went out to Rite Aid got some Calmoseptine. I stopped their yesterday evening and ordered 5 of them and they came in today. No sense being short.

Once my pouchitis is gone completely, then I can start with the Probiotics.

Rocket
Rocket,

I have been on 875 X 2 mg of augmentin for over a year chronic for my pouchitis but I will admit I often miss doses in between. I have also been
on canasa almost the entire time for what seems to be refractory cuffitis also.

I don't think it is unusual for your doctor to be very aggressive at trying to get the pouchitis under control with various meds as seems to be your case. If you are also bleeding the canasa should help that.

I am like DJB in that my inflammation never completely quiets and although my pouchitis symptoms are not as bad as my cuffitis symptoms are, I do also suffer from chronic fatigue
due it as well as the lack of sleep from several trips to the bathroom during the night.

Until lately, I never napped during the day. I have recently started to try and incorporate this into my routine so I feel halfway human.
Do whatever you must to get rest so your body can heal and hopefully the meds will do the trick for you.
All,

Doing better and thank you to all for your feedback. The meds are never fun as everything I eat, I don't know how to put it, but your taste buds are way off. Eating is not as bad as when your are done. By that I mean, your mouth feels like it ate rust or copper.

Went to a party for my niece who graduated high school and my nephew who graduated middle school. Had a great time, but the food was not as good due to my own taste buds.

When I did see my doctor last week I mentioned fecal transplant but he said that is not for paitients with pouchitis, but for those who have cutifss (spelling error on my part).

Marianne, I saw you at 10:30 Mass this morning but did not get a chance to say high. Saw Greg though. Thanks for the nfo regarding Calmoseptine that Waldgreens carries it.

Its hard to communicate as much as I like because I am so busy at work.

Rocket.
Hi Marianne,

I have my good days and bad days. Didn't get to mass today until noon.

I see the doctor tomorrow but the longer this lasts, the more frustrated I become. I am supposed to go to Hershey with my son leaving next Sunday but I have not been myself and I thought by now the Pouchitis would be gone. Its better then what it was, but its been draining me of my energy.

Rocco
Feeling much better now, thank God. It seems like I have not been feeling well for months. I finish my meds this week.

A couple of things puzzle me though. My appetite is not what it used to be and I get nauseous quite a bit. I have to keep drinking Sprite or Ginger-Ale to help this out and I normally do not drink soda because it can cause me gas.

When I do get hungry, I am really starving and I do my best to eat slow. Most things I eat do not taste good anway.

I hope that once I am off the meds, my appetite will improve but I do need to look at having a more healthier diet and cut out a lot of junk like sweets.

Rocco

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