maybe the inflammation has narrowed part of the pouch and that’s why you can’t empty it in one shot? I’m dealing with that now. I also was recently diagnosed with Crohns and cuffitis. I’m on Remicade and methotrexate and prednisone and other meds again. If you do have Crohns it will be ok. It sucks but it will be ok. 

thanks so much for replying. that’s what i fear is chron’s. i did have a pouchoscopy done in the past where drs said i don’t have the chron’s cell tissue(?) in me.

it can’t be cuffitis because surgeon took every part of my rectum off as i had rectal cancer so I’m really left with the pouch. 

i really hate this disease. 

how are you doing now? are the meds helping you at all? I’ve never been on remicade before - even when I had uc.

It may be backwash ileitis. Whatever it is, you will find that out. Easier said than done but try not to let it stress you out. I’m sure it can and will be treated. You can always call them Monday and ask them on the phone, that way you at least will know and you can do research and be better informed when you go to your appointment. 

It is too early for the meds to really be working for me. I’m not doing well. 

Ulcers can be a sign of pouchitis. If Cipro had been working but seems to have stopped, it might be worth adding Flagyl to see if it helps. When Cipro stopped working for me, adding Flagyl did the trick.

Crohn’s is rarely diagnosable directly, and it usually can’t be perfectly ruled out, either. Finding an effective treatment is more important than certainty about the diagnosis.

hi Aaron 

gosh i really hope you feel better soon.

thanks so much for the tip. i did end up going to visit my surgeon earlier. reports say it’s not pouchitis. no chron’s.

and yes, i can’t empty in one shot just like you. surgeon just gave me loperamide to try for now until i go back again on monday.

hi Scott 

thank you for commenting. 

reports say it’s not pouchitis. I have cipro on me but am afraid to take it as I’m wondering if my ulcers were formed due to the use of cipro....this is something i should ask on monday. 

I’m just a bit irritated because it seems i have absolutely no issues with leakage or anything when i take loperamide. but what comes out is all water....and in very small portions. 

Ulcers are inflammation or a manifestation of inflammation so as far as the Doc saying it’s not pouchitis and it’s not Crohn’s - the question is what is it then?

Incomplete evacuation in my case always was a hallmark symptom of pouchitis or inflammation of the Pouch. I believe the Pouch isn’t as elastic when inflamed. If you look at an MRI the walls of the Bowel thicken where it’s inflamed. This was observed on my MRI Enterography at the J Pouch inlet and was attributed to backwash ileitis, which was successfully treated with a short course of Entocort (3 months) and antibiotics.

i agree with Scott F’s post- worry about getting treatment and not the correct diagnosis. It’s not going to get better on its own without treatment, in all likelihood. I would suspect pouchitis. If you and Docs are waiting to get a diagnosis before proceeding don’t wait too long because it can get worse. As I have stated elsewhere, regardless of diagnosis, the lines of treatment for Pouch inflammation is pretty much the same regardless of diagnosis. Antibiotics, Entorcort, Cortenemas and other topical agents, and finally biological drugs. Doctors are becoming more aggressive with using biologics than they were 10 years ago, as more data becomes available on the effectiveness and safety of these drugs.

i have been through the entire progression noted above and am now on biologics. 

One last comment - be careful with loperamide. It can make pouchitis worse if you are taking it with antibiotics (overthickening of stool) and it does absolutely zero for the inflammation. It gives you the illusion that because you have less BMs and no leakage, it’s treating the problem. It’s not. It’s just slowing things down and by doing so, possibly making the inflammation worse if it’s not otherwise being treated.

I have extreme sensitivity to loperamide when combined with antibiotics and any more than 2 caps per day results in constipation city, something you really don’t want with an inflamed Pouch.

CTBarrister

Thanks for your reply. I went yesterday to see the surgeon - had an appt.

my CRP was high and iron level low as well as ALB. 

They don’t really know what it is either, but they said maybe pouchitis so they gave me some cipro to take. They asked me to take loperamide in the evening before bed but I haven’t been doing that. I started cipro yesterday. 

Surgeon asked me not to take the Pentasa enemas together with the cipro because then they won’t know which med actually helped treat the pouchitis(?). 

When you had pouchitis what kind of diet were you on? Did you go cold turkey with sweets? Any probiotics? Yogurt? Cheese?