HealingWell
Search Close Search
☰

Pouchitis?

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/28/2014 5:40 AM (GMT 0)
Hello.

I've been having really bad watery foamy stools for the past week. So I went to see my GI dr who prescribed me Lopermin and gave me IV for dehydration 2 days ago. He thought it was a stomach bug, some sort of virus.

That night, I felt do much better but then started having chills and had a temperature and aches in upper abdominal including stomach area as well as lower.

I thought it may be pouchitis after chatting with some people and researching myself, so I went to see a surgeon the next day. He didn't scope me as my main surgeon was gone. He just prescribed some Cipro and told me that it could be either of the two - either pouchitis or a bug. He did do blood work and much to my surprise, my CRP level was the highest mark ever. My level wasn't this bad even when I had UC :(

So I started taking Cipro from yesterday and I'm not sure anything is helping.... :( My stomach is in pain as well, although not consistently.

My surgeon won't be in till next Tuesday....

I guess I'm just stressed cause my GI dr has been extremely nice and seen me though my UC days and I went to see him first and I went to see a surgeon the next day so it makes me feel like I betrayed him.

Not really sure what to do but perhaps I'll wait till the surgeon comes in on Tuesday.
Posted 8/28/2014 2:26 PM (GMT 0)
That's a tough one. It could be a bug but it also could be pouchitis. I'm sorry I can't really help because I haven't experienced pouchitis (yet) so I don't know what it feels like.

Hope it starts clearing up with the cipro. I have read others saying that certain antibiotics work better than others.
Posted 8/28/2014 3:14 PM (GMT 0)
Do you guys ever have to do stool tests with a pouch? It sounds like you could have a bug. Hopefully you see some improvement with the Cipro quickly
Posted 8/28/2014 4:57 PM (GMT 0)
In 13 years with a jpouch I have never been asked for a stool sample. I've had pouchitis once, that was in year 7. As Marianne said, this could be a virus or it could be pouchitis. Time will tell. For me when I got pouchitis for the very first time, I knew exactly that that's what it was. I've had several virus's with my jpouch, and it's not at all like pouchitis. Sorry to be so vague.

Sue
Posted 8/28/2014 7:13 PM (GMT 0)
I think you should have a stool test... When I thought I had pouchitis, it was actually C. diff. Cipro would have made it worse, I needed vancomycin. My GI did a scope first, no stool tests, but when I didn't get better she did the stool tests. After I started vancomycin I felt a huge improvement in just a couple of days.
Posted 8/28/2014 8:54 PM (GMT 0)
Thanks so much for all the input- really appreciate it.

I took Cipro for two days and I felt nothing was getting better so I've stopped it and I feel better.

The strange thing is, this is coming down very very slowly, almost like a storm or hurricane that is passing through at an extremely slow speed.

Usually when I get a stomach bug, it passes pretty quickly and the fever is also persistent.

Right now, i don't have a fever but at certain times of the day, I get the chills and high fever and then it goes away an hour or so later. Wouldn't that mean there's inflammation?

Just been hydrating myself and eating a Popsicle. The foaminess in my stools seems to have calmed but still on the watery side. Want to throw up but nothing is coming up...

Yes, very hard to tell....think I need to see my surgeon....but he won't be in till Tuesday and Going to ER I don't think they can do anything ....
Posted 8/28/2014 9:50 PM (GMT 0)
I think a stool test would be helpful. Can you just have your doctor call one in and you can drop it off sooner than later?
Posted 8/28/2014 10:07 PM (GMT 0)
Hope you feel better soon. The nausea thing makes me think it's a bug.
Posted 8/28/2014 10:24 PM (GMT 0)
notsosicklygirl: I think so, too. If things get worse, will go today.

Marianne: thank you . Also praying it's not that my pouch is inflamed and that it's only a bug.
Posted 8/31/2014 1:22 PM (GMT 0)
Sorry to keep posting on here..

Didn't get to see my surgeon the other day and will be able to see him tomorrow.

I think I have a hemorrhoid now and it's just hurting so bad and I've just been washing wish warm water after every bathroom trip. Luckily, I have some enemas left for it. Just have to pray that I won't have to go to the restroom right after I put it in.

Also can't pee now :( think I'm going to end up with UTI. It's like, unless I heat up down below, it won't come out. Even if it does come out it's very little.

And for about a week now, I've noticed that my stools are green. It started out with really bad watery stools which were green but then today I felt really good and even had appetite so I ate and took some Imodium and I see my stools were sort of formed and were actually brown, but now it's back to greenish color. Can juice do this to you? I had an acai juice and some green vegetable juice.

Sorry I'm sorta out of it and not sure what I'm writing...just can't wait to get to see my surgeon tomorrow morning! But I honestly will die if he sticks his finger in my butt omg it will kill me and hemmie.
Posted 8/31/2014 10:01 PM (GMT 0)
You poor thing. Have you tried a steroid suppository? I would think that would be better for a hemmie. That or hot sitz baths.
Posted 9/1/2014 5:22 AM (GMT 0)
Sitz baths are heaven for hemmies. Def the only thing that helped mine!

Good luck w surgeon tmrw. Hopefully they figure something out.
Posted 9/1/2014 12:39 PM (GMT 0)
Oh the veggie juice can definitely make your stools green. It sounds like you have a lot going on right now. I hope it's just a bug. Post back what your surgeon said. Hope you are feeling a bit better today!
Posted 9/2/2014 4:41 AM (GMT 0)
Yes, the enemas I have are the steroid ones that my surgeon prescribed to me a few months ago. I keep them just in case. And I can totally agree. Hot sitz baths are the best! I do this so many trillion times day - should just go and create my own bedroom in there. I practically live in the bathroom these days.

Finally saw a surgeon today. What a relief! He called for blood work and also did a stool sample and tested for c.diff (although I won't know results till next week). He also scheduled me for a scope tomorrow, which is good, but I'm just so afraid that freaking tube is going to hurt my butt so bad :( Doing scopes when I don't have to worry about a hemmie is fine and doesn't hurt but omg...I fear tomorrow.....

Blood test came out right away and the CRP was only 0.2 lower than last Wednesday...still very high....and it showed dehydration, which is hard to believe after all the liquids I took in yesterday....

He said it could be a stomach bug but also pouchitis or c.diff....he was telling me that meds like Imodium or probiotics can take care of those things sometimes but he said mine seems like it's just not really getting better.

Now I'm having a hard time with my stools - very hard to get out. It's like I have to push and it hurts :(
Posted 9/2/2014 4:44 AM (GMT 0)
Just thankful to be able to talk in here...thank u...
Posted 9/2/2014 5:11 AM (GMT 0)
let us know how the scope goes!

I'm sure if they slip some pain meds in with your sedative you hopefully wont have a sore butt at all :)
Posted 9/3/2014 10:34 AM (GMT 0)
Thank you , embersglow1, but I ended up dying from butt pain. Glad it is soo over!!

One of my surgeon and another surgeon came to take a look, and much to my surprise, they found 6 inflamed spots (ulcers) in my jpouch, most of which were located on the upper part. Really shocked.....but really glad I did the scope....I never expected this....just sitting at the bus stop now wondering if I should just keep this to myself for a while. Too shocked to speak at the moment.

He took tissue(?) or cells(?) from those six locations - will find out results next Tuesday. He said it's pouchitis but he's going to test for Chron's and prescribed pentasa enemas for a few days until they figure out what it is.

So I'll know everything for sure next Tuesday - the stool test that I did yesterday and everything else. Just don't know what to think now.....I wonder if there are jpouchers who are using pentasa enemas?? Or perhaps I should ask in another thread...a bit depressed at the moment.
Posted 9/3/2014 2:16 PM (GMT 0)
Oh yikes! I hope it's just inflammation from pouchitis and not crohns. Please let us know the results. I used to do Rowasa enemas when I still had UC which I believe are very similar to Pentasa. They never did anything for me but that was back then with severe UC. Try not worry too much yet. Will be thinking of you.....
Posted 9/4/2014 4:50 AM (GMT 0)
Oh you poor thing. what an awful experience. I had an unsedated sig scope the other day that nearly killed me. Mark my words, NEVER AGAIN. I hope yours wasn't as bad. I really hope you aren't dealing with anything more than pouchitis. I am so sorry :(
Posted 9/4/2014 2:36 PM (GMT 0)

penny471 said...
He said it's pouchitis but he's going to test for Chron's and prescribed pentasa enemas for a few days until they figure out what it is.

He said it's Pouchitis so I'd focus on that until they tell you otherwise. They are much better at dx'ing CD vs UC than they used to be, especially when they have your entire removed colon to work with.

Are you starting to feel better with the abx and Pentasa enemas?

I'm having problems myself with my pouch, I think it's a bacteria infection. Doing the stool samples today....ugh. I thought that I was done with all this when they removed my colon. I've been having horribly painful gas and bad diarrhea for the past few weeks.
Posted 9/4/2014 5:55 PM (GMT 0)
Marianne:
Thank you ....yes, I just read somewhere that Rowasa enemas were used in the US and is similar to the Pentasa ones. I also used to use this when I had UC but like you, due to severity, didn't work much.

notsosicklygirl:
Omg I can soo relate. Mine was also unsedated yesterday so I can only imagine how bad your's was. Hope you're feeling better, though.

ks1905:
Oh no :( Can't say much but your's sounds like pouchitis, too. I heard that the tail bone (?) area starts to hurt when you have it. Mine started hurting from yesterday. In any case, I hope they are able to figure out what's going on with you. Are you taking some probiotics? My surgeon was telling me that it helps a lot with pouchitis. I started taking them from about 3 days ago and yes, it has helped some, although still gassy like you.

I just put in my first pentasa enema - it's like 2 am here...had to wait till my pouch was empty.

Yes, I'm also in shock because I thought I was done with these kind of issues after surgery and I was happy. Now I'm starting to regret the stuff I ate....

Do ulcers in the pouch go away with treatment like pentasa? I try not to worry about it but can't wait till Tuesday.
Posted 9/4/2014 6:42 PM (GMT 0)

penny471 said...

ks1905:
Oh no :( Can't say much but your's sounds like pouchitis, too. I heard that the tail bone (?) area starts to hurt when you have it. Mine started hurting from yesterday. In any case, I hope they are able to figure out what's going on with you. Are you taking some probiotics? My surgeon was telling me that it helps a lot with pouchitis. I started taking them from about 3 days ago and yes, it has helped some, although still gassy like you.

My tailbone area does not hurt. The gas/pains that I have starts pretty far up in my digestive tract and the diarrhea is very liquid at most times with a smell. That's why I'm guessing it's a bacteria infection, but me speculating on what it is doesn't matter, they will find out what it is and we'll treat it.

My surgeon recommend not taking any probotics/Metamucil at first to see how the pouch develops on its own and adding that stuff later if necessary.

I find that drinking more helps a lot with my gas pains. If I don't drink enough the gas builds up and I'm almost in tears it hurts so much. Once the gas gets down to my pouch then I can pass it.
Posted 9/4/2014 6:46 PM (GMT 0)

penny471 said...

Now I'm starting to regret the stuff I ate....

Do ulcers in the pouch go away with treatment like pentasa? I try not to worry about it but can't wait till Tuesday.

The stuff I eat is going through me in 3-4 hours.

I thought they treated Pouchitis with antibiotics? I'm a novice at this stuff so I could be totally wrong. My reversal was 9 weeks ago.
Posted 9/7/2014 10:49 PM (GMT 0)
How are you feeling penny? I hope better :)
Posted 9/8/2014 12:42 AM (GMT 0)
Feeling a tiny but better - think the probiotics are really kicking in. Thanks for checking in on me. Appreciate it.

Trying not to eat or drink after 4 pm so that I can put in the steroid enema for my hemmie, but I'm starting to think that it's not a hemmie anymore. There's been pain right by the tail end(?) and I notice a very small dab of like a discharge-looking thing on my pad (I wear a pad at night in case). Could this be a sign of a fistula or abscess? Never had one so I wouldn't know. No fever, though.

Also, the other day I strained really hard to get stool out and a lot of discharge came out of my vagina (sorry for the tmi...) like vaginal discharge. White mucous? Is it because I strained too hard? (sigh)

Get my results tomorrow and I can't wait but also fearful if telling my surgeon about this bum pain.
✚ New Topic ✚ Reply
12