Apparently i had pouchitis for almost a full month with joint pain and never really noticing the increase in my stools... without treatment...could this pouchitis be harder to get rid of since it was caught so long after i got it? and since i had it so long untreated could it have permanently damaged my pouch?..because now that the pouchitis is going away..i only go about 4 times a day..when i was going 12 times but it had become normal so i thought nothing wrong..and my joint pain is gone and the leaking from my vagina is going away too..so does this mean the pouchitis is gone? or just still healing?

Alicia

When you get a quick response from treatment, it is always a good sign. Untreated pouchitis can become more difficult to get rid of, but as they say, the proof is in the pudding and it seems you are on your way to health. I won't sugar coat things though. The fact that you had associated extraintestinal symptoms, such as arthritis, means this is more closely linked to IBD than to simple pouchitis and it may mean that you develop recurring disease. But, I would tend to think that it would have nothing to do with your delay in treatment. I may mean that you will need maintenance medication. I know you'd like to be med free (wouldn't we all?). I was diagnosed when I was 15 and I am 51 now. You can get used to taking meds to feel well. I will keep my fingers crossed that your fistula continues to shrink and close.

Jan

Alicia,
Anything can cause a fistula...a bad connection between organs...and scar that didnt heal but why in the world would you wait so long before doing anything about your pouchitis?


Jeff

quote:

never really noticing the increase in my stools

If you do not have the hallmark symptoms, they do not look for or treat pouchitis.

Jan

One of the hallmark symptoms for chronic pouchitis is joint pain which Alicia mentions in her post and maybe she wasnt as forthcoming with all her symptoms with her doctor at the time or realized symptoms like that could be associated with pouchitis..go to gastro doctor on the web and they have a question forum where 3 doctors discuss pouchitis..learned this last night..although if Alicia pain is gone it could mean hers flucuates back and forth just like when I had uc and it seemed to be ok for a month or on a different medication but eventually uc wins if you have the chronic kind and why we all have J Pouches in the first place ... I hope the best for Alicia and pouchitis is a thing of the past but not going to say she doesnt have anything like Chronic Pouchitis when in fact she may and got to keep it real but what do I know and hope she keeps in contact with her doctor on a regular basis while shes fighting these issues

Jeffrey


what we dont know we should seek

This message has been edited. Last edited by: Miracle Drug,

Excuse me for not being clear and defining my terms. A hallmark symptom of a disease is a symptom that is nearly always present and is considered to be "the" symptom to be looking for. Such as, with UC the hallmark symptoms are bloody diarrhea and urgency.

In pouchitis, increased frequency and loose stools are the hallmark symptom. Arthritis may be associated with pouchitis, but it can occur independently, so unless there is a specific history, you don't look for pouchitis with arthritis unless there is diarrhea.

Jan

Let me add my two cents for what it's worth. Back when I had my surgery and take down and before I developed my bartholin gland cyst and finally vaginal/j-pouch fistula, I also had pouchitis and didn't know it. It came on slowly and gradually. I never experienced the fever, joint aches, diarrhea, and bloody stool. All I noticed was a crampy feeling and strong urge to move my bowels. This was very gradual and got stronger and stronger each day. As time went on I had no appetite, felt weak, and finally did get the flu-like symptoms associated with pouchitis. Just like Alicia, I didn't know I had pouchitis and this went on for about month. My surgeon had never told me about pouchitis until I finally called him and gave him my symptoms. I was very surprised--didn't even know I could get inflammation of the j-pouch. When he put me on an antibiotic, it cleared it right up and I felt 100% better. From that moment on whenever I started to get that strong crampy feeling and increased urge to go, I knew that it might be pouchitis, kept an eye on it, and if it worsened started the antibiotic on my own. I've always had a prescription for Cipro ready just in case and my docs have learned that I know my body best.

The sad thing is that had I known I had pouchitis sooner, I might have stepped up my treatment right away and possibly avoided the resulting abscess and fistula. My mucosa had been stripped during my surgery and I'm sure that the pouchitis symptoms I kept ignoring probably weakened the wall between my anus/sphincters and my vagina.

Pouchitis can come on strong and raging or it can come on slowly and progress to a "flare" (almost like UC).

Obviously my area never recovered from this original pouchitis episode because after many, many fistula fixes, I am having my j-pouch removed next month after 15 years.

Caty

hey, i dont think you will get a fistula just because you waited a month. but i know a very deep ulcer can become a fistula. so maybe there is a chance...but i had pouchitis for 3 months without treatment because my family doctor misdiagnosed it. he had no idea wat pouchitis was and i am his only and first pouch patient--- so i learned my lesson then, for all things pouch related see a specialist no matter how smart your family doctor is. and i finally found a combo of antibiotics that fixed my pouchitis after i struggled off and on for a year......but after 3 months of feeling great, i got sick, had a scope, and guess wat?! i now have a pouch that looks healthy, with a fistula near the end! so this sucks and we dont know why it is there! i guess it can happen anytime..but my doctor says you usually only see them pop up like that with crohns, and im supposed to have ulcerative colitis. so now it is being called "indeterminate colitis" which means it has features of colitis but is aggressive like crohns....bah..