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My daughter had a balloon dialation on Friday.it was her third time getting it done.
They also took biopsies. She had intermittent bleeding and frequency. We got the results back this morning and the cuff had improved,
mild inflammation in the pouch.
Dr said pouchitis and prescribed Flagyl. And to continue the Canasa.
Now a couple of hours ago she started
bleeding. Why would she have blood now?
She had a small amount after the dialation bit a lot more now. Could she have an infection? It wouldn't stricture down again in two days would it?please any help?
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I would hold off on the flagyl; just my opinion, since this does not seem like an infection and I do not see how flagyl would be an applicable treatment for acute bleeding. It's possible that the dilation somehow nicked or injured a blood vessel or else nicked the puch lining, and it may be the case that it's being reaggravated every time your daughter has a BM. The lining of the ileum does bleed easily, I'm told. Honestly, if this were me I'd be heading back to the surgeon's office as this is not normal; the bleeding should be tapering off.

I agree with Scott, though, in that blood in the toilet bowl can look like a lot more than there actually is. Still not something I would ignore, however.
Thank you everyone for responding I really appreciate it. We are getting worn down.
It is the same amount of blood that she was having before the dilation, it actually drips out into the toilet. This has been a problem on and off for months. It's just been so difficult. She had take down April of 2014 and since then has had complication after complication an ileus, a twisted bowel, knee arthritis, A hematoma, an anastomoses stricture, pouchitis, a blockage, bleeding, and several scopes and dialations, hospitalization a, etc. She has never stopped bleeding for more than a couple of weeks. Every time they go in they say it looks pretty good visually but she has blood dripping out into the toilet. I don't understand where it is coming from. The biopsies show mild inflammation once in the cuff and now in the pouch. Has anyone had this happen? We started the Flagyl last night after our GI called. The bleeding has slowed.
She is also doing the Canasa and Anucort.
She is still complaining of some stomach pain. The frequency has slowed but still having diarrhea and some bleeding. How long does it take for the Flagyl to work. And has anyone had blood just drip out? Would there be something like C diff to worry about?
Last edited by Boda
Ok, I misread your original post. I assumed that she was bleeding after the dilation.

The most frequent cause of bleeding with a j-pouch is cuffits. I assume this has been ruled out?

I myself had an issue with bleeding that we on for over a year. I would fill the toilet bowl with blood but an hour later there'd be nothing. BMs were otherwise normal. I was in the same situation as your daughter - everything was ruled out, cuffitis, pouchitis, etc, and the pouch looked good on the scopes. An MRI was clear. Yet I was anemic and frustrated that the cause could not be found. Finally I was referred back to my original surgeon who did another scope (shortly after I'd had a major bleed that I went to the ER for) and he felt that I was bleeding at the staple line, where the anastamosis attaches to the cuff. I was scheduled to have a cauterization/ablation to the area but the bleeding spontaneously improved while I was waiting for the procedure, so we never went ahead with it. Could something similar be happening with your daughter, I wonder?
Thank you both.
Spooky that sounds a lot like what my
daughter is going through but wouldn't
they see that on a scope? Did it drip out
at times for say a day or so and then
go away for days? sometimes she has it a couple of days in a row and then nothing for days. She has a stricture that easily dialates and some mild UC in the cuff.
She just had a scope on Friday and the cuff was improved but found some mild inflammation in the pouch for the first time. They recommended Flagyl and continue on the Canasa. The doctors usually go in and say everything looks pretty healthy and are confused where the blood is coming from saying they never see any frank bleeding or frayability when they scope her.
How did they figure out what was happening with your bleeding? And why did they do an MRI? Should we try to get one?
Last edited by Boda
Boda, I would go days or weeks without bleeding, and suddenly have a BM where I filled the toilet bowl with blood. The bleeding would usually taper off but on a couple of occasions it went on for a day or two, which is why I went to the ER. But my situation was particularly frustrating because the scopes were always clear, and my pouch otherwise functioned fine (no increased frequency, no evidence of pouchitis, etc). They threw cipro and flagyl at me too in an effort to see if the situation calmed down, but in fact the antibiotics just caused a bunch of other side effects without addressing the bleeding. It was usually because there was a delay in when I was having acute symptoms, until the scope was scheduled (that's the healthcare system for you. Wait times galore). It wasn't until the second last scope, where my GI was able to get me in only a couple of days after I had a severe bleeding episode, that he noticed the area where the pouch attaches to the rectal cuff was "bleeding freely" when he touched it with the scope. This was determined NOT to be cuffitis, and I was told it was due to the staple line which had become fraible. The option is still to cauterize the area and we were going to go ahead with, but the bleeding improved to the point where the condition has been stable for the time being so I don't want to do anything of that nature, unless I start getting severe symptoms again.

Anyway, it's important to get your daughter in while she is having symptoms, as it was in my case, this is the best chance to really see what is going on.

But Scott is also correct -- hemorrhoids can be another cause of bleeding. I've had them in the past and they can be quite painful. Hemorrhoids can be internal or external but are usually palpable on a digital exam. Since your daughter has just had an exam, chances are the doctor would have noticed this.
Thank you both. She is doing ok
right now blood is tapering off some.
The Flagyl is making her tired and
nauseated so I don't know how long she
will be able to take it. The surgeon
said he didn't see any ulcers or mention seeing hemorrhoids but I will ask.
I try to get her in a soon as I can when the bleeding occurs but it always takes a few days at least I will try and keep things updated as we go! Thank you both.
Boda,

So sorry she is still going through this. As you can probably tell from some of my other replies, I went though almost 18 months of similar frustration with bleeding and no specific explanation or solution. All I can say is, keep trying to advocate for your daughter. Try to get a scope arranged WHILE she is bleeding as this is the best chance of catching the source. If she's asymptomatic while undergoing the scope, nothing may show up (as is what happened with me over and over again). If a bleeding episode is prolonged or severe, go to the ER and hopefully they can run some tests while she's there.

Other tests: MRI or CT scan should be done, if it hasn't already, to rule out the source of the bleeding being higher up.

The last resort may be a camera pill endoscopy, but I have my own reservations on those as there is a risk of the camera becoming impacted and causing an obstruction, which will require immediate surgery.

I know it's frustrating. I have been there. I suffered greatly in that I became quite anemic, and because the entire situation put me at wits end and resulted in anxiety. All I can suggest at this point is just to keep putting pressure on the doctor as long as she continues to have symptoms.

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