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Cincinnati Visit

She was hospitalized Friday for a ostomy prolapse. They tried reducing it and failed then from messing with it so much it quit outputting so much. We stayed the night she was NPO they were prepared for surgery and that night it retracted on its own. She was released early Saturday Morning. We got the call back from Cincinnati and they were scheduling but with another hospitalization we ended up getting an earlier appointment. We saw GI and Ped Surg in Cincinnati we are staying in Kentucky. Tomorrow we have another appointment with Hepatology.

They have a couple of possible new diagnosis. We don't know without testing. It could be PSC or Blocked duct caused by Pancreas Divisum. Also testing for another immune system issue it could be has something to do with immunoglobulins being low. I don't know until we test MRCP and Liver biopsy. The GI thinks she has Crohns but has no proof. He thinks the distal loop is blocked from something inside (Crohns) or outside (adhesions). Both Ped Surg and GI agree end ileostomy is best saving the rectum for future surgery if we want. Can wait to remove the rectum later if needed. If no PSC SIAA can be done for either UC or a Crohns. Suggest all future operation to assume she has Crohns even though she is not being treated for it because the antibiotics are helping. If after surgery she is symptomatic bigger guns come in. Specifically mention Remi and Pred. :(. We are planning to do an end ileostomy.

Her hospital wants to do the SIAA now and give her a mucous fistula blow hole for a later connect. Highly doubting this will happen the surgeon said it would be ok if it were Crohns to do this. GI agreed. Still thinking I will take the high road. Mentioned it might be our only chance depending on what things look like. Basically they think I should suggest what I want but give them the ok to do an SIAA if they think they couldn't do it again safely. The surgeon explained it as they have to connect the intestines to somewhere whether it is an ostomy or rectal cuff doesn't matter.

Hepotology tomorrow.

Went swimming all day and night in the pool. Rowan and her sister loved it.
I am sorry you have had such a trying week, but glad you are able to have her seen at Cincinnati Children's. I will be praying for the best possible outcome.

Being in limbo sucks, I am sorry you have been stuck there so long Mary. It's not easy to live with the wait and see. Just hang in there and take one day at a time. You have been doing great (although maybe breaking a few things??) :)

The pool is a plus! I love it that kids can be so happy with simple things like a hotel pool:)
Let us know how Rowan is doing, we are all thinking about you both constantly.

Many ((((hugs))))):ghug:


Staff member
I'm so sorry, Mary, that you never seem to get a clear and definitive answer! :ghug: I hope today's appointment is able to, at least, give you enough information and some reassurance that you are moving in the right direction.

Always in my thoughts! :ghug: :ghug:
Praying for good news!!!! So glad you are at Cincinatti sounds like you are finally in good hands!!!! Will be waiting to read your next post. Sending hugs.
QueenGothel, we take my son to Cincinnati Children's. We have been there for 8 years now and absolutely love his Dr. and staff. And the nurses on the GI floor are great. Hope you get answers soon and that your daughter feels better soon!
Hey Mary,

We will be at clinic tomorrow at Cincinnati Children's at 11:45. We don't usually go to the downtown campus but Johnny's Dr wanted to take a look at him because of all the weird stuff going on with him lately. If you are around shoot me a text, I would love to see you and Rowan. Or maybe we will just run into each other.

You have my cell. I hope all is going well. (((Hugs)))) and prayers. :)

We are home. We got home from Cincinnati yesterday had GI and Surg appointments today at her hospital. Basically in a nutshell Cincinnati thinks we should approach her next surgery as if she has Crohns. The SIAA I guess is ok to have with Crohns because it is a straight pouch. Both GI and Surg in Cincy said they would give her an end ostomy and leave her alone for a couple years. Cincy Surg also said that there are only so many shots at the connect to the rectum and this next surgery might be her only shot. Thinks if she is in bad shape (rectum) to do a SIAA at the time of pouch removal. Basically we might not get another shot at it. Cincy Hepatology said she needs to have an ERCP to diagnose PSC and or pancreas divisum and Liver biopsies possibly taken at next surgery if ex-lap is performed. Said her numbers were good and he thought it could be PSC but that it is so subtle it could be nothing. Hepatology here wants to basically do whatever Cincy says because he just came from there and said I saw the best people in the world in Cincy, but he thinks she does have PSC. Also wants to get her a GI for her IBD so we went from no GI to two GIs. I guess when it rains it pours. So Hepatology here was refreshing. BUT then I saw Ped Surg here and they again add heavy pressure to do the connect to the rectum. I told her surgeon today that I was feeling pressured and feel like we are subject to Murphy's law. Therefore I want to take the high road. If things looked bad remove the rectum and permanent end ileostomy rather than doing the SIAA. If things looked good sew up rectum for later connection. She didn't like this at all. Gave a good argument of but what about when she is 25 you know she will have to live to 70+ with this. I said unless she has PSC. She then said what about her body image issues? I said what about a Crohn's and her needing as much intestines as possible, let's be realistic she will probably go through more resections as she is only 5 now. She won't make it to 70+ if we waste intestines for something I consider cosmetic. Basically I made points and she agreed and every point she had I had an argument for. It was not good. That being said she is going to have the big cheese call me. I need better proof of this IRA/SIAA being useful for Crohns patients. I don't know many whom have had a colectomy without a permanent ostomy. I am not comfortable going to have to ask around my forum and groups here to poll parents. We don't know she has Crohns but if one of the best GIs says to error on the side of caution I think I should heed his warnings. Ped Surg says it is not proven to be Crohns, we don't think it is Crohns and think the straight connect is perfect for her even if she has Crohns.

Idk I have been on the boards for a while and in FB groups and I am under the impression with Crohns and Proctocolectomy an end ostomy is the preferred operation. Or am I completely misinformed and IRA and SIAAs are normal for Crohns?
Mary I don't know what to say - what an emotionally daring week you must have had. So glad u stood your ground and didn't allow yourself to be talked into something you didn't want. I think of Rowan often as she is the same she as Lucy. Big hugs to you both
Mary,I just wanted to end you guys a hug. I don't have advice on this matter. Will they do the biopsies and surgery at your local hospital or will you go back to Cincy? Is that an option if you decided you want it?