Pouchitis Again

I have just started entocort for chronic pouchitis, but mine seems to be originating from an unknown etiology according to my GI (and last scopes). Unfortunately, it seems some of us who are prone to pouchitis can have it become chronic. If the antibiotics are not working, you may need to switch to another one or if you are having no relief after a week or more (as it sounds like may be the case for you), you can ask your GI about this med or 6mp as both are used in chronic cases, although entocort is really not for long term use.

I know this is frustrating and painful. I could never tolerate rectal meds when my back end hurt like yours does. I do a lot of warm soaks to ease the pain and use A and D ointment or desitin. The issue though is most of the pain is internal and you should make sure you do not have fissures which can develop from chronic diarrhea. The treatment for those is different (rectiv cream and nifedipine cream).

Good Luck. Try some chicken soup and things that are very easy on the digestive system.

Jeane,

Come to think of it, after I had my EUS and Sigmoidoscopy On April 7th, the doctor mentioned the Entocort to me but then did nor prescibe it. I never hear of 6mp before.

Thank you.

Rocket

6 mp is a immune suppressant. Some people with chronic pouchitis (and UC/Chron's) take this.
Ask your doctor about the entocort if you are not getting relief from the antibiotics. It is usually a three month period and you are weaned during that time (or after the three months...not sure as I am just starting it).

Do you know if you have active ulceration or just inflammation? If you have not had a scope with biopsies, you should to determine this. Good luck.

Jeane,

Inflamtion of the pouch is what my doctor told me. I was sedated for the EU so he could have taken some biopsies. He mentioned that to me a few weeks before the procedure. However, I don't know if my doctor actually did this or not.

I will have to ask that question when a member of his staff calls me today.

How often do you take the entocort?

This Friday I have to go for my annual tests because I had Kidney Cancer in 2009. Then on May 2nd, my brother comes with me to Memorial Sloan Kettering to get the result and I sure want to be off the meds by then. The idea of spending a day in Manhattan and not have any energy due to Pouchitis is not going to be any fun. My brother and I make a whole day of it by having a nice meal for dinner at the end and had planned to go to Little Italy for a light lunch. I have to be off the meds before that if I plan on drinking at a wine bar and dinner.

I don't do a lot of drinking mind you but in NY, I like to splurge.

I have not started entecort yet but script is 3 pills in am..total 9 mg I believe.
You can drink on cipro but not flagyl.

Don't be in a rush to get off antibiotics if they are helping your symptoms. Better to be well with everything coming up then sick and miss events. If the antibiotics are not easing symptoms try the entecort. Antibiotics often work fast for me with pouchitis and I always take cipro, never flagyl. Hate that med.

Jeane,

Just got off the phone with a nurse who spoke to the doctor.

My doctor wants me to stay on the Metronidaole (Flagyl) for 3 more days only take 2 instead of 3 x a day. Finish the Cipro I am on which I have enough for 6 more days. The cramping and nausea if from the Flagyl. I know the Flgyl made me nauseaous, but did not know that gave me cramps.

The other meds like entecort and 6mp were not for me according to the doctor.

Unfortunately, chronic pouchitis for me or to continue to get it is just the nature of the beast. Not diet.

I thought maybe my stress level would make it even worse or bring it on more often. I am going through a divorce so that is a problem and I am hoping that the divorce is final soon so I can get on with my life.

I have begun to heal from it by taking the first step and that is the decision to forgive and that has been a great relief. But there is still a lot to do. Being a Caholic, I will proceed with an Annulment and then we have to sell the house so there is a lot going on.

Thank you.

I'm sorry to hear about the divorce. Stress can aggravate pouchitis. Wonder why doctor said no entecort and 6 mp? Maybe you need to be like me and have longstanding chronic inflammation where tissue injury has shown up in biopsies or diagnosed with crohns. Hope the meds work. You can stay on cipro much longer if needed. I have been on and off for two years. My biggest complaint is bad muscle fatigue.

Bo Shen does report that dietary carbohydrates are implicated in pouchitis. I'd tend to believe him, but I hope I can get away with continuing to eat carbs.

Too much carb gives me a problem too. Although they (meaing the medical staff) say diet has nothing to do with Pouchitis, I am not convinced of that. Today, is the first day in a long time I have an appetite so I must be finally on the mend.

Thus far, I have had no problems today. I am just very, very tired of having to deal with all this pain that now all my body wants to do is sleep to recuperate.

Rocket

Rocket,
I get that way too. I always have muscle pain and cannot figure out if it is from the cipro or pouchitis. I am never off it really longer than a couple weeks so hard to tell. I just know I have way more fatigue in general since jpouch surgery than ever before (pain too for that matter).

Jeane,

I really need to speak to a GI/Nutrionist to really see what diet will work for me. So I need someone familiar with both sides of the spectrum. I just know I can't eat foods high in fiber, milk products, soy, things like that. It's tough. You find somethings in the super market that are low in fiber, but then they have milk. Or vice-versa.

There has to be some sort of test that the medical profession can give you that would give you some sort of readings that would cause things that you will have a bad reaction too.

Have a Happy Easter

rocket if you are eating toast,.. that is probably wheat unless you are having rice bread like UDI.

have you tried diligently the FODMAP diet.
It really isn't that hard if you want to give it a shot.

There is scientific and medical evidence that FODMAP diet works for SIBO. symptoms are similar to pouchitis.

Hi Liz,

I have heard that before. After I see my doctor on May 2nd, this is my doctor who treated me for Kidney Cancer back in 2009, I am going to look into this ELISA/Act test that will measure everything that your body consumes to see what your reaction is. Don't know much about this yet though. If I have other information, I will pass this along.

Rocket