Ulcerative colitis and now crohns?

[staypositive]

I am 64 yo and when I was 40 I had a total colectomy with a J pouch installed. I use that expression in jest of course. Over the years I have had many problems with "pouchitis" joint pain, surgery for strictures, etc. My main problem has been the pouchitis at least 3 to 4 times a year.
Is there anyone out there who was first diagnosed with UC and now after total colon removal, crohns?? I've been told that I probably had crohns all along but the UC was just in the large intestine which I now don't have. My gastro doc, who is great, wants me to take budesonide but the side effects are really crappy. (pardon the pun)

Confused and looking for answers.

 

[David]

Welcome to the community.

Unfortunately, there are a LOT of people who are initially diagnosed with UC and later with Crohn's. You'll find them all over this forum

Do I understand correctly that you've had strictures in your small intestine?

 

[staypositive]

Hi David and thanks for your reply. I'm glad I'm not the only one.
Yes have had several pre blockages and one which required surgery in2011
Fortunately I feel them coming on and have stayed out of the hospital for awhile because I now know what to do or rather what NOT to do.
I'll be happy to help anyone having these same issues. I'm a retired nurse and was a former speaker at the crohns and colitis foundation in long Beach yes ago.

 

[staypositive]

Thank you for your welcome and know this will help me as we'll
.My name is Bonnie

 

[Layla]

Welcome!
I'm another one that was diagnosed in the early nineties with UC and last year re-diagnosed with CD due to strictures that needed a resection.
Like you I had become pretty good at avoiding blockages after many years of practice!

You've come to a great place:thumright:

 

[staypositive]

Hi layla! Yes had to also have a small intestine resection due to a stricture. Do you still have your large intestine?

 

[Layla]

Yes, luckily I do. They offered to take it out as medication wasn't doing much but I declined in the hope better medication would come along soon.
And strangely my colon is now CD free, no inflammation whatsoever and not any for many years.
Of course I was still having problems but my bloods were mostly good so it was diagnosed with IBS until I finally had a complete blockage at which point the diagnosis became CD.