Rowan's Pouchitis
- Thread starter QueenGothel
- Start date
Help Support Crohn's Disease Forum:
A super fast update. I talked to him for 20 minutes. He said he would not come to Cincy. Tat Rowan's doctor as doing exactly what he would do. That these surgeons at U of M are amongst the best surgeons and are the elite in j-pouch surgery, he knows all of them. 100% confident in there abilities to troubleshoot this issue. He said the only thing he would do which he didnt know if it has already been done is a Prometheus Testing to completely rule out Crohns again if it hasn't already been done recently. He thinks maybe a course of PO Pred is needed and or Hydrocortisone Enemas to be more aggressive, but that it is risky if a surgery is needed. My decision. He was very informative and gave me his email would like to hear how she is and said if I ever need to talk to feel free to give him a call.
He was so nice.
He was so nice.
I believe they did do the Prometheus test in Detroit before going to Mott but it will be hard to find in the 1000 pages of testing they did in her medical records. They will resend it out.
They do not want to use PO steroids because they do believe she need surgery. Rowan is prone to wound infections. We are doing the exploratory surgery tomorrow morning. The will send off the Prometheus test first thing in the morning. They probably will be giving her a temporary loop ileostomy for 6 months time. Unless they find something big and very obvious in regards to adhesions running amuck. They prepared me that her stoma will probably prolapse during this 6 months time, because her intestines are so dialated currently. According to the ostomy nurse this is not dangerous at all. Weird looking yes but not at all dysfunctional like a retracted stoma would be.
My reasoning for doing this is her inflammation according to biopsies was microscopic and not visual at all. She has been on Flagyl for 7 days IV antibiotics for 2 and Cipro now for 5 days with little to no improvement of this distention. Her Pouchitis should be gone by now and distention is not a normal symptom of it. IMO she has adhesions causing this, regardless of CD or UC I don't want her exploratory done in a emergency situation. Her Doctor will be able to take her time exploring and if CD shows up afterwards then we deal with it head on. Otherwise she gets a much needed break from all of this.
She doesn't want the ileostomy but she is ok with it now. She is aware it is going to happen and I think it is a good plan. Then if they need to test the pouch for function they can do the testing easily via loop to distal pouch.
This all goes down tomorrow morning at 9am via exploratory laparotomy.
They do not want to use PO steroids because they do believe she need surgery. Rowan is prone to wound infections. We are doing the exploratory surgery tomorrow morning. The will send off the Prometheus test first thing in the morning. They probably will be giving her a temporary loop ileostomy for 6 months time. Unless they find something big and very obvious in regards to adhesions running amuck. They prepared me that her stoma will probably prolapse during this 6 months time, because her intestines are so dialated currently. According to the ostomy nurse this is not dangerous at all. Weird looking yes but not at all dysfunctional like a retracted stoma would be.
My reasoning for doing this is her inflammation according to biopsies was microscopic and not visual at all. She has been on Flagyl for 7 days IV antibiotics for 2 and Cipro now for 5 days with little to no improvement of this distention. Her Pouchitis should be gone by now and distention is not a normal symptom of it. IMO she has adhesions causing this, regardless of CD or UC I don't want her exploratory done in a emergency situation. Her Doctor will be able to take her time exploring and if CD shows up afterwards then we deal with it head on. Otherwise she gets a much needed break from all of this.
She doesn't want the ileostomy but she is ok with it now. She is aware it is going to happen and I think it is a good plan. Then if they need to test the pouch for function they can do the testing easily via loop to distal pouch.
This all goes down tomorrow morning at 9am via exploratory laparotomy.
Last edited:
Just got out of consult with the surgeon. Her pouch was huge, they believe it has failed/stopped working. Further testing will need to be done before we know exactly if we will be doing another pouch which would be two more surgeries. They are glad they did the surgery. The remainder of her intestines are in good shape and of normal size. Waiting to see her.
I haven't said this to anyone else. But I know the number 1 reason for pouch failure is CD. Hoping this is not the case.
She has an ileostomy.
I haven't said this to anyone else. But I know the number 1 reason for pouch failure is CD. Hoping this is not the case.
She has an ileostomy.
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 23,973
I can't even begin to imagine what life would be like for Rowan without you by her side Mary, you are a godsend. :ghug:
What an awful, awful week you have had and what an ending, my goodness. What a relief to know the surgery went well and they have found the problem. Your instincts were right, go in now before it became a emergency. I hope more than anything that CD doesn't come into the equation hun, wishing right along with you for a negative CD result. :ghug:
I hope Rowan is recovering well and speedily and she isn't too disappointed with ileo this time round, bless her. :heart:
Thinking of you both, always.
Dusty. xxx
What an awful, awful week you have had and what an ending, my goodness. What a relief to know the surgery went well and they have found the problem. Your instincts were right, go in now before it became a emergency. I hope more than anything that CD doesn't come into the equation hun, wishing right along with you for a negative CD result. :ghug:
I hope Rowan is recovering well and speedily and she isn't too disappointed with ileo this time round, bless her. :heart:
Thinking of you both, always.
Dusty. xxx
- Joined
- Sep 19, 2010
- Messages
- 4,379
Just wanted to check in and see how Rowan is doing. Sending healing thoughts and prayers.
She had a visit from the tube fairy last night. She pulled out her NG in her sleep and says she doesn't remember doing it. She is much happier today without it. Shocked completely, as she usually gags from it being removed. Epidural is out and so is foley. She walked a bit today in physical therapy. Blubber Butt (ileostomy) farted so yippee. Pipes are starting to work again. Still NPO, maybe clears tomorrow. Pain being controlled with IV Tylenol and Tordol rotation.
Blubber Butt actually is the sealion from Happy Feet 2. The little penguin calls him Blubber Butt then shakes his booty at him and says Kiss It, Kiss It, Kiss It. Yep that's my girl, she came up with it all on her own! I wanted a normal name so we could be more discreet.
She ate soft foods today! Turned off IV fluids, switched to oral meds and we are possibly going home tomorrow. We will see. 
P.S. why do my posts always end up being a saga??? Can we just get the diagnosis right the first time around? Always expecting the unexpected.
P.S. why do my posts always end up being a saga??? Can we just get the diagnosis right the first time around? Always expecting the unexpected.
- Joined
- Dec 31, 2012
- Messages
- 464
Hi Mary
Sorry I'm late on this thread
Gosh you guys have been though alot
Glad ROwan is doing much better.
Fingers crossed you get home soon x x x
Sorry I'm late on this thread
Gosh you guys have been though alot
Glad ROwan is doing much better.
Fingers crossed you get home soon x x x
I am starting a new thread. The next chapter....:wine:
We are Home. still worried a bit. Her belly does get distended but there were significant loops so it will take time to return to normal.
We are Home.
still worried a bit. Her belly does get distended but there were significant loops so it will take time to return to normal.
