I haven't had bad pouchitis for a number of years but from I vaguely remember I might guess that it might well be that. but some would argue there isn't much difference between say a crohns flare and pouchitis. truth be told they are probably linked and hard to distinguish. the other thing I might guess at is you might have had as you suggested a blockage and that's effecting you as well. so here's the question, what meds do you take to manage crohns? what do you take for pouchitis? I would almost think that you are either already dehydrated or on the verge of it, a bag or two of fluids might be a big help. in the interim I would focus on rehydration with an eye towards replacing electrolytes using something like Drip Drop or other specialized focused electrolyte replacement. good luck.

Hi Marybeth,

I'm 45 years old. had UC since I was 21 years old and after an aggressive flare up that last two years, to ended with a Jpouch (3 stages) since Feb 2014.  The first 6 months with my Jpouch my life was ideal, with no issues, but after that "grace period" I'm being dealing with constant pouchitis, cuffitis and I start believing I have Crohn's.  I was taking Cypro and seems to be working great for about 6 months but lately not much.  My GI doctor wants me to try Cypro for 10 days then stop it for 20 days, and start over again the same cycle.  I'll start that formula this week, but my question is, have you tried Cypro or Flagil and seems to work?  Usually Crohn's  don't respond to antibiotics, in which case I think any steroid therapy my help.  I will let you know in my case if it works.  My problem is my surgeries were done in Cleveland Clinic, FL., and that's about 3.5 hours from where I live, so is not so easy to contact my surgeon.  My GI doctor in the area is helping me a lot but sometimes I think I need the opinion of my colorectal surgeon.

I really hope you feel better, I know the feeling, I'm experiencing it right now.

Best of Luck

Laura

Marybeth6207 posted:

Hello! I got my J-pouch in 2013, and diagnosed with crohns june of 2015. Last saturday I had a crohns flare, then tuesday morning i woke up in pain i had a blockage on the top of my stomach, i was able to drink alot of water and walk around which luckily it passed within a few hours, for more then 3 days after i could literally feel the food hit that stop and i had sharp pain, it went away but it was pretty intense, That subsided, but from the time of the flare a week ago i am having teriable pain in my lower back, Throbbing and aching, and the front of my lower stomach is also cramping, I am going 15 or more times a day, and the pain is intense when I do use the bathroom, enough to make me break a sweat and chills, Does this sound like pouchitis or crohns flare? I see my surgeon tuesday I am just curious if any of you have similar experiences. Thank you!

Hi Marybeth,

At one stage i was suffering with Pouchitis every 3-4 months. I do remember the sympoms were very similar to the ones you describe. Blood and often mucus in my 'winnie-the-poohs' was deffo the one certainty every single time. First ever Pouchitis i remember like it was yesterday despite being many yrs ago, the pain was immense! My gosh, my boyfriend actualy dialed 999 for an ambulance because i was in so much pain. 

The medications were 1 months antibiotics, Metronizadole and Co-Amoxyclav for a whole month. Metros used to make me feel like i was dying. Extremely difficult to stick too but now i take them with no side effects so its well worth taking them with determination. It was Sulfasalazine that came to the rescue, after around 3 months of taking these the Pouchitis has only struck twice i think in 5-6 yrs? So unlike UC and Crohns thankfully the almighty gave us a break with Pouchitis, it seems a whole lot easier to treat and keep at bay than the other two. 

Hope it went well for you 

deweyj posted:

I haven't had bad pouchitis for a number of years but from I vaguely remember I might guess that it might well be that. but some would argue there isn't much difference between say a crohns flare and pouchitis. truth be told they are probably linked and hard to distinguish. the other thing I might guess at is you might have had as you suggested a blockage and that's effecting you as well. so here's the question, what meds do you take to manage crohns? what do you take for pouchitis? I would almost think that you are either already dehydrated or on the verge of it, a bag or two of fluids might be a big help. in the interim I would focus on rehydration with an eye towards replacing electrolytes using something like Drip Drop or other specialized focused electrolyte replacement. good luck.

I agree, unless it was UC you had before the Jpouch it may be difficult to know if its a flare up of Crohns or Pouchitis. When my Colon was removed it was goodbye to the UC too so my Pouchitis was by default Pouchitis. But i have a friend that described to me his Crohns flare ups, omg, its a cruel thing to suffer for sure. 

Dioralyte is the go-to rehydration med for us in the UK and even with no flare up present Jpouch people will also benefit from using these drinks a few times a week for sure. As a skin therapist i see Dehydration every single day almost in people with fully intact inside bits. Ensuring good hydration makes so much sense and can combat a lot of the negatives of having a jpouch.