Back at the hospital

The MRI will likely show them better what is going on. They are very sensitive tests, and they'll probably wait to give you further info til the results come back.

They're probably ruling out C Diff, too, hence the isolation.

Just as Crohn's disease presents differently in people without J pouches, it can present differently in people WITH pouches. It can be mild, or worse. Not everyone has bleeding (3 folks down the block have it, only one has bleeding with flares). I have some perianal issues that are now called Crohn's by some... I don't have bleeding or anything you've described, though prior to Humira, I had lowgrade fevers and malaise and general feelings of being unwell.

Thank you Rachel.
We are just getting anxious waiting
here. The GI team hasn't come in yet
this morning. We hope to get some
answers soon and hoping it isn't more
bad news.

Some of the possibilities...
Bleeding coming from the stricture
which is causing fecal stasis (or
poop to sit too long in the pouch)
which is causing inflammation or pouchitis.
Or the bleeding is coming from somewhere
higher up and the MRI will show inflammmation
in the small bowel higher up. Please pray it is just the pouchitis and not Crohns or
something worse. They said they may need to do ANOTHER scope. Hopefully not right now.
The Flagyl might be helping.

Fingers crossed for you all, but even if it is Crohn's, there are treatments and it doesn't mean it's the worst thing ever. ❤️

Thank you Rachel.
She is trying to choke down
the barium. Not going well.
I am afraid of her pouch failing.
I feel like we made a bad decision
getting the pouch
So sad for her.

I hope things get better. In any case, I don't think you made a bad decision. Even when our reasonable risks work out poorly it doesn't mean it was wrong to take them.

Thank you I appreciate this site.
We are waiting for the doctors to
go over the results. Very nervous
about what they will have to say.

Scott is very right. You HAVE to try things. It wasn't a bad choice... It was worth giving things a shot.

My daughter had to choke down a bunch of stuff for a CT enterography with barium. It was awful, she cried the whole time. She's 12 now, was 11 then.

I was super sad my kiddo inherited my issues.

Hope it goes ok. The drinks ARE awful, but remind her, it's all for the good of getting some better information.

Thank you both. They said the MRI came back and looked good. No signs of structures or inflammation higher up in her GI tract. The IBD team met and went back through her case again and came to the conclusion that the stricture at the outlet of her pouch is causing a lot of the problems.
The GI and surgeon agreed to do a scope in the morning and inject Mitomycin C in the structured area after the dilation. They said this should keep it from displaying down again. She is still here at the hospital and on Flagyl IV. They are going to take her off because she is very nauseated. Has anyone had this procedure done? Nervous
Because she just had a dilation 11days ago.

Just got back up to the room after her dilation/scope. Dr said he did the dilation and injected Kenalog in the stricture instead of the Mitomycin C. She has cuffitis also.
Her last scope the cuffitis was improved from the previous scope (just two weeks ago)
but looked worse to us. The doctors are going to talk and come up with a new plan for her treatment. He feels like the knee joint pain is also being caused by the cuffitis. We are still here at the hospital until we can figure out a plan to get her feeling better.

We are back home after 5 days at the hospital. Cuffitis and a stricture.
New plan is trying Canasa once a day, proctofoam x 2 daily, finish up the Xifanan, probiotics and call in one week with follow up. Another. Scope and possible dialation in one month. Our doctor thinks that she has a stricture possibly caused by the cuffitis. She thinks Tacrolimus might be our next step.
I read online and it seems like there might be a suppository for it?
Has anyone tried Tacro?

Sending positive vibes for your daughter and for you...

Thank you lablover

Positive vibes from here as well.  I hope your daughter gets to feeling better very soon with the new meds and that you both get some much-deserved sleep after the hospital stay.

Sounds like the docs are trying to be creative, so that's a good thing. I sort of cringe when I hear of docs shrugging their shoulders and giving up if the standard treatments don't work.

 

It can be very frustrating and demoralizing to feel that you are not making progress. Sometimes it takes dome trial and error to discover what works. Fingers crossed that she's on the right track!

 

Jan 

Thank you keepmovinon and Jan.
I really appreciate all of the support we get here. Other people who have not had to go through this don't understand. It is nice to have empathy and support here.