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M
I had a colectomy, j pouch formation, & loop
Ileostomy created 7/15/14. I have not had the reattatchment surgery yet, but my ileostomy diverts about 10-20% so my pouch is still a little "active." Recently I developed a washed out feeling for 2 days, followed by what feels like burning in the bottom inside of my rectum, & some pink tinged discharge. The surgeon did a rectal X-ray with contrast. He didn't see any pouchitis but he ordered cipro 500 mgx10 days because he wants to rule it out. It's very painful & I don't think it's "butt burn!" The burning feels INTERNAL.
It's all new to me. Does this sound like pouchitis? Is it painful like this?

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TE MarieTE MarieMember
We have 30% more bile in our excrement that we did before. (I don't know where I remember the 30% from.)I'm wondering if maybe the problem is the poo is not flowing out as fast as it should and is lingering too long inside your newly fashioned j-pouch and sensitive cuff. The cuff is where your j-pouch was attached to a few cm of rectum they usually leave in during the double stapled procedure, unless you had the hand sewn procedure. In any case that area might sensitive to the bile. If you see red blood then that could mean something more serious.

I'd suggest sitz baths to keep your bottom as clean as possible. If you need to wipe please blot and clean with baby wipes or water. Get all of the excrement off of your skin.
TE Marie
suebearsuebearMember
Antibiotics will slow down your transit and make you feel better even if there is nothing wrong with you. It can be false sense of well being; if your problems start up again after you end your antibiotics it might just be normal recovery.

What you have described sounds to me like normal recovery. You will have waste divert from your ostomy to your pouch. Normal. You will have blood and mucous expel from your pouch. Again, normal. You will have spasms and new sensations. Normal recovery. Be patient, take a deep breath; this will improve over time.

Sue Big Grin
suebear
CTBarristerCTBarristerMember
I actually had pouchitis for a long time simmering and didn't know it, mainly because after surgery I didn't know what the "new normal" was. Because the severe pain I had with UC was gone, I thought I was good to go. The hallmark pouchitis symptoms for me when I try to go off antibiotics are inconsistent ability to cleanly evacuate the stool from pouch (sensation of not all of it coming out despite pushing hard), increased frequency, increased urgency, and increased nightime leakage.

Suebear makes a good point about antibiotics thickening the stool. I found that when I take antibiotics I have to take less imodium or else I get constipated, and the constipation itself results in difficulty evacuating, which will exacerbate the pouchitis. I also noticed Xifaxin has less of a thickening effect than cipro, flagyl, or augmentin.

All of these things are learned through experience with the pouch function over time. I had UC for 20 years and have treated pouchitis for 20 years. The pouchitis has been more treatable than the UC was, so the way I look at it, I "upgraded" my IBD disease condition. Even when pouchitis flares, the sensation is different- a crampiness and bloating, and an irritated sensation in the pouch, as opposed to the deep and pervasive abdominal pain and and blood loss I had with UC. I have never had bleeding in my stool with pouchitis.
CTBarrister
Last edited by CTBarrister
V VoorshwaMember
Hey Marymomof.

I little bit off topic but I want to get this message out. After your reattachment the Dr is going to ask (while in the hospital) if you are passing gas. Make sure that you are consistently doing this and it wasn't just one time it happened and not consistent.

I made this mistake after my reattachment and it was extremely painful for a month afterward because my guts did not wake up properly. Make sure that you have some consistent movement in your guts because if you don't, the build up of gas and pain is pretty awful. Not trying to scare you, just letting you know that things need to get moving properly.

Best of luck!

V
V
R Rebe0505Member
i will second ct barrister as to pouchitis symptoms but eliminate leaking at night.. but adding to the rest of his symptoms it starts to feel so irritated and like i have raw skin in there when i go..this can be really painful and pretty unbearable..

trading the uc for my present issues has just had me trade one set of ungodly problems for another set!! but if i rotate antibiotics i get some relief for periods of time..but its always a feeling of ok will this one work now..very unsettling..i have tried diet and it helped kept me symptom free or antibiotic free for three months but things changed and back to rotating antibiotics however i continue the diet.

hoping your issues are just normal healing and you do not have ongoing pouchitis/bcteria overgrowth..its no walk in the park!!!
R
DU Dam ucMember

Had my take down surgery 7weeksago today had all the surgery in 10 months bean a hard road to travel  was maxed only having to go to loo 6 times in twenty four hours few days after coming home things got really good forming still was on Codie’s for pain got down to three loo trips but last 2 weeks things changed seen surgeon today gave me antibiotics for inflammation in my pouch  couldn’t believe my luck  how well things were going   

DU
DarrinDarrinMember
Rebe0505 posted:
i will second ct barrister as to pouchitis symptoms but eliminate leaking at night.. but adding to the rest of his symptoms it starts to feel so irritated and like i have raw skin in there when i go..this can be really painful and pretty unbearable..

trading the uc for my present issues has just had me trade one set of ungodly problems for another set!! but if i rotate antibiotics i get some relief for periods of time..but its always a feeling of ok will this one work now..very unsettling..i have tried diet and it helped kept me symptom free or antibiotic free for three months but things changed and back to rotating antibiotics however i continue the diet.

hoping your issues are just normal healing and you do not have ongoing pouchitis/bcteria overgrowth..its no walk in the park!!!

I have had j-pouch for 23 years now. Had UC for 10 years prior to that. Pouchitis was not part of my life until about 13 years into my J-pouch.  Yes, I watch what I eat at times, but when feeling better always dip into foods I should avoid. 

I wanted to respond to the pouchitis comments, as cipro used to work great for me, however, over time it stopped working and required use of a second antibiotic like flagyl or another to be used. A few summers ago I got severely dehydrated and ended up in hospital where I decided to try paleo diet and stuck to it for a year. It did help and did not have pouchitis that I recall during that year.  I still maintain some of the paleo ways, however, what I wanted to say was you may want to try staying away from wheat and dairy and use VSL3 DS probiotic. It's expensive, but very good. I believe it's all about the bacterial level in the pouch and being that we don't absorb normally, the bad bacteria  multiply and then, I believe the flare ups occur. I also take a prebiotic to feed the probiotic (I know sounds nuts) but really, you may want to give it a try.  The VSL3ds is expensive and no longer covered by insurance. It's considered over the counter.  I just bought some today on the Blink health app and got at Walmart pharmacy. It was the least expensive.  The ds is 900billion level, so well beyond others.  Give it a try. The prebiotic I bought was Gundry md "prebiothrive". Just offering some ideas for you as I've dealt with it for many years.  If I can save someone some trials and pain, awesome.  Let me know how it works for you if you try it.  Best of luck. 

Darrin

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