Hi everyone,

So I posted in this in Help Now section but haven't gotten too many responses yet and I feel we are running out of time...

My long term boyfriend Josh had his j-pouch surgeries in 2006, he has done fairly well, slept through the night and has 8-10 bm's/day, although he states he never feels emptied completely.
That was up until Nov. 2008, he was hospitalized for a few days for severe abdominal pain. They gave him some antibiotics and said it was pouchitis. (and he should expect a crappy quality of life!-nice, huh). We thought ok good at least we know what is going on. Needless to say after 10 days on the antibiotic, he enjoyed Thanksgiving dinner and said he never felt better.

Two weeks later after being off the antibiotic he ended back in the ER for severe adominal pain, and quickly his pouch stopped working! His GI did a scope at our small local hospital and quickly sent him to Boston to see the surgeon feeling she could do very little.
He has now been in the hospital a month! On TPN for 3 weeks, still the pouch is not working-he is using a catheter. The surgeon said during the scope of Josh's pouch it was dilated and there was inflamtion slightly above his pouch. The Prometheus test was inconclusive. 2 small biopsies that have been taken are felt to show crohns characteristics on the opinion of the pathologist but the drs. aren't sure. He is at his wits end and is emotionally and physically drained. The GI surgeon feels he needs a permanent illeostomy and the GI said no drugs will help him, permanent illeostomy is the way to go. They say they have no understanding why his pouch all of a sudden stopped working in the hospital.
He has had little problems up until this point..what gives, it seems so many others have been through so much more and still have their pousch? Is the crohns affecting the pouch so much since his hospitalization that it is no longer working.
Why do you think the antibiotics in November made him feel so much better?

He is deathly afraid of the permanent illeostomy and saying he will refuse, but the drs. have left him little other choices, they want to have surgery. Any suggestions or test that we should further recommend? Thanks!

Sorry to hear of Josh's issues...what hospital/dr are you using? Is it the same surgeon who did the original surgery? It seems really fast for them to say perm ileo without knowing what the problem is...

If the drs feel an ostomy is needed, maybe they can do an end ileo leaving the pouch in (this is possible - I had it done)...this way, Josh can work with the drs to figure out what happened and has the option of trying the pouch again in a while.

As a side note, though I know an ostomy is not what most people want, know that life iwth a perm one is great! I had chronic pouchitis and chose to move on from the j-pouch (even though I had issues with my loop ileo - the end has been no problem at all) at the age of 30. Couldn't be happier. Have since had 2 kids and live a very normal life.

No drugs, no food restriction, no activity restrictions, sleep when my kids do, etc...been hiking, kayaking, swimming, traveling, etc...

Again, I know it must be a shock to get this news, but if that ends up being the reality, know that it can be better than just okay, but it can be great.

All that said, I would get a second opinion. If he is not the surgeon you are seeing, I suggest seeing Dr Peter Mowschenson at the BIDMC. He is very creative and an out of the box thinker and he may have some ideas other surgeons wouldn't.

Thanks Jill. He is up at Boston University, seeing Dr. Becker. He is not the original surgeon. Original surgeon doesn't take Josh's current insurance. It seems really fast but as I posted in Help Now section, they are saying it is a "fuctional" problem not a mechanical and saying they have never seen a case like this before and feel there is little they can do..ugh.

I will look into getting a second opinion, and thank you for the words of support regarding the illeostomy, he is so fearful of it and how his life will change with a permanent one.

Just a heads up, BMC announced 250 layoffs and a bunch of budget cuts. NOt saying it will affect Josh's treatment, but you might want to consider how things might change or be different. Becker certainly has a lot of experience, but when I consulted with him I found I saw more residents than him. I know it is tough with Josh's condition, but you might want to try for a consult with another surgeon. I bet Dr Mowschenson would do a phone consult - might be worth a try.

If Josh ends up on the ileostomy road, don't hesitate to get in touch. It truly has been a godsend for me.

Thanks jill...I read that about BMC and it has seemed that he is seeing more residents than anything which of course is frustrating for him.

Do you know how you set up a phone consult? Getting a second opinion is something we have never had to do before? Thanks for the info!! I am going to try and do that.

I sent you two private messages.

My daughter had her surgery at BIDMC there in Boston...her surgeon was Dr. Deborah Nagle and has had excellent results. Let me know if you'd like any contact information for a consult or second opinion. My heart goes out to you...I know how frustrating it can be to see someone you love going through so much adversity. Hang in there...brighter days are coming!

Hi

I would suggest to go to the Cleveland Clinic in Ohio, they are gods. Look up Dr. Ian Lavery he is a GREAT Surgeon. If you live in Michigan then go and see Dr. Fuad Turfah at Oakwood Hospital he is GREAT too.

Good Luck

Cheryl