Hello all.

Sorry to post 2 topics so close, but I am hoping someone catches it because of the title line.

Nov14 biopsy results show mild cuffitis and no pouchitis or inflamation to pouch. Symptoms are blood on stool, diarreah, incontinence after eating and horrible bloating. Feeling that I can't empty pouch fully or gas. Have not properly passed gas for a week. I feel like a zepelin.

I am on my 5th day of Flagyl and second day of Canasa. Blood is almost gone, but the diarreah (bm's are sometimes large, sometimes small), the bloating and the inability to pass gas are still there.

Let me put it this way. It's a dull bloating pain: When I had a full blown obstruction and was hospitalized for 3 days, I was in horrible pain, and the morphine numbed it down. The feeling I have is of an obstruction with morphine.

Could I have cuffitis/pouchitis and be partially obstructed?

Thoughts?

Thanks for reading

Mark,
I can only speak from my experience which consists of pouchitis and cuffitis. The symptoms you are describing sound like cuffitis. With the pouchitis I always get absolutely dreadful butt burn as if all I am expelling is battery acid and I am often reduced to sobbing due to the pain and irritation this causes. My bottom is so sore nothing but continual hot baths help with the pain and irritation. In addition, the frequency is very high with very little output each time I try and empty my pouch.
I hope you feel better soon. The canasa should ease some of your symptoms within a week or so.

Thanks very much for the reply .

So cuffitis can cause a bloated feeling, that can not pass gas or empty and incontinence/diarreah when you do end up going at the same time????

I have not had cuffitis before, so I am trying to figure out what all these symptoms are.

Thanks again for sharing your thoughts

Hello guys,

everyone else agrees that cuffitis can give you incontinence, feeling that you can't empty, cramps and inability to pass gas all at the same time??

Today I went on short term leave from work. The only thing I have been able to do is go to the gym and stay at home, and that's only because the gym is next to my house and I can wear depends with sweats. This is like the worst UC attack plus some extra. I think I have gone to the toilet over 20 times. I am up all night on the rr and with cramps, and even a liquid diet of ensure and the chicken broth my mom and grandma brought over still has me on the same boat. (tonight I am eating a damn burger, might as well) I can only hold the canasa for an hour with effort, so I have to use three to make sure I have it in there for at least 4 hours.

If anyone thinks this sounds like anything other than cuffitis/pouchitis please let me know, I am seeing the surgeon tomorrow and either this garbage is going to get fixed or he WILL put me in the hospital with IV and morphine .

Thanks-

Hope you get some answers and things improve. Keep us posted

Hey Mark, so sorry to hear you're still suffering with this. You might want to ask your surgeon, or GI, or internist about having a CT or MRI, or small-bowel follow-through to check for other possibilities outside of pouchitis/cuffitis.

Let us know how your appt. with the surgeon goes - best wishes.

Thanks for the replies.

I did have a CT about three months ago.

Based on the searched I have been doing on "cuffitis" and "pouchitis" it seems like all these "U.C reloaded" symptoms I am experiencing are possible because of an inflamed cuff or pouchitis.

although cuffitis and pouchitis get tossed around a little loosely, it's my understanding that true cuffitis is essentially a UC flare in what's left of your rectum. I'm assuming you have a stapled pouch which don't usually come with a mucousectomy. Point being, they generally have better success treating it with UC meds (pouchitis is a bacterial issue and gets antibiotics). Although flagyl can have some effect on cuffitis, have they talked to you about adding something stronger along with the Canasa?

The sensors in the rectum are believed to be largely responsible to being able to tell fart from...well you know. It makes sense that while this area is inflamed you'd be having issues with that. Try a digestive enzyme (beano is the classic example) and avoiding gassy foods like dairy and things high in sugar. You can also take something like pepto multi symptom or something similar with meals to help cut the gas down.

Obstruction symptoms can vary, but one of the few commonalities is the rise and fall of pain in waves. If you don't have that it's probably not an obstruction and what you're describing is what you'd expect with cuffitis.

Hope you feel better
Todd

Thanks for your replies. The waves of pain I get are when I start getting the cramps for the mini bowel movements.

Saw the surgeon today. He gave me an enema and scoped me for 10 minutes. He said the pouch was not happy and very inflammed. He said when he took the biopsies Nov 14th , all looked healthy. He has now prescribed Xixafan (never heard of it). He said for at least 3 days , things won't begin to "turn around"

So I took one with Gatorade and crackers I bought at Walgreens as I picked up the Medicine and it seemed to help. On the other hand, as the time for a evening meal came about, I am still getting the same sharp pains and bm.s after eating something more substantial.

I really hope this works

Interesting. Antibiotic, you may know it as Rafaximin. Newer, stays just in the intestines and is one of the big 3 for pouchitis along with Flagyl and Cipro. Also tends to be really expensive depending on your coverage.

Sounds like they're swinging over to a typical pouchitis treatment. Are they keeping you on the flagyl? Pouchitis chances increase as the pouch ages, and it's not unusal to get first time onsets in the 3-5 year range which you're right in the middle of. If this takes care of it you might want to look around the board for posts on probiotics. They've been lifesavers for me after years of chronic pouchitis issues.

Hopefully this is a short term thing for you. Hang in there, it does eventually get better.

THanks Todd. My understanding has been that I need to stop Flagyl and now take Xifaxan. Is it typical to take both? I will call them to check, just to be sure.

As far as the cost is concerned, the Xifaxan was a 50 dollar co-pay and did not hurt as much as the 100 dollar co-pay for Canasa.

I have been doing searches for probiotics on the forum archives and it seems the VSL is the prefered kind.

I do hope this is short term. When I got the obstruction that got me hospitalized for 3 days on non-stop morphine , I thought, surely this is the worst that can happen to my pouch... This pouchitis clearly is the second worse and depending on how long it lasts might be a contender for first place.

On a possitive note, I was able to sleep 4 hours last night, the best in 3 weeks, so hopefully the Xifaxan is doing its job

Thanks again

I forgot to add that my surgeon did not give me a specific food regimen when I asked him. He said a liquid diet would not necessarely help

Third day on Xifaxan. there was an improvement the first day, and I do not seem to improve from that. I am really starting to worry that this is caused by an adhesion or stricture..... What would be the best test to determine either?. I have been reading the archives and it seems that more than one person has been treated for pouchitis/cuffitis, but his/her real problem was an stricture or adhesion. ....would my surgeon have been able to determine an adhesion/stricture from my last lengthy scope 3 days ago/. Would I have nausea with a stricture/adhesion??. I definately do not have nausea and am eating more and more, but the bathroom situation , although better, if still marked by sudden urges to have a BM which are acompanied by cramps and sometimes end in incontinence.

How much longer do I give the Xifaxan to do its thing??

Mark.

If you had a stricture at the anastomosis sight I believe your surgeon would have either seen it at pouchoscopy time or felt it when he did a finger insertion. I have had two dilations in the office for this and the surgeon always knows it is there after he does his insert and tries to break it up.

Sounds like since your scope you are dealing with pouchitis and if you had cuffitis, the surgeon should have noted that also at that time. Mine always seem to go in hand in hand.

The antibiotics may take a couple of more days to really kick in and maybe he has started you on a lower dose than can be upped?

Hi Mark J. I know it's a bit late after the conversation but I know what you mean; I have the same problem of feeling like my pouch is blocked... I officially have been diagnosed with cuffitis a few months back, hence went on ASACOL suppositories and colifoam enemas. However, I developed more symptoms after starting on them so was allowed to experiment with antibiotics; within a few days of metronidazole or ciprofloxacin I was perfect again. Then when I stopped them I was sick again within one or two weeks (pain, cramps etc.). I seem to be going through cycles of having it and not having it and am now looking in to VSL3 for maintenance therapy. However, it is very expensive to buy in New Zealand and the antibiotics are free in our health system so pro's and con's either way.