Any advice? Crohn's or colitis/surgery or not
Tue, March 06, 2012 4:41 PM
Well, I was originally diagnosed with Crohn's. In fact, I was diagnosed with it about 4 times. But it has always been an "on the fence" thing with UC. I stopped responding to treatment going on 2 years ago, and I am currently seeking treatment in Chicago. After months of testing and waiting, they called me this morning and said, based on my colonoscopy from february, it looks more like UC. But now I have to fly back to Chicago for another colonoscopy so they can look first hand to be sure. If it is UC, I'll have surgery. If it's Crohn's, I'll have a stem cell transplant. If they make the wrong decision, I'll most likely have a recurrence of my disease. If they make the right one, I could be "cured" (of course there is no cure) or atleast in remission for a long long time (which would be amazing since I have yet to be in remission since my diagnosis in 2007).
I'm just not sure which I'd rather it be, haha like I'd rather it be either! I would like to hear some feedback from people who have both and have had surgeries or some kind of radical treatment (i've already tried imuran, cimzia, humira, remicade, all 5-asas (im allergic!), prednisone, methotrexate, special diets of course, fish oil, probiotics, antibiotics, etc)
Thanks!
Joined Mar 6, 2012
Wed, March 21, 2012 1:25 PM
Reply posted for jmcbrid2.
jmcbrid2
Hi There, that sounds like you have allot o your plate to say the least. You are looking at a stem cell transplant?, wow! I have to admit that there is very little to nothing I know about that. I admire how aggressive you are being on hitting the Crohn's or UC head on. That's just the way I was and am. I have Crohn's Disease, first diagnosed in 1987, after a year of knife stabbing pain and major weight loss. When they found out, I was in the hospital in days, and I could not wait to be cut open! I was great until 2003 through 2010. I was on Remicade and Imuran, both those meds failed, just stopped working. In the middle of all that, I had the pneumonia in both lungs and was in the hospital for 5 days. I have had about 10 operation's total, and was pretty fed up. My surgeon and I both new that getting the colostomy bag would be the way to stop it and get my life back. So I did, I had my rectum removed, most of my colon and have a permanent ostomy, that was in '09. Now I am playing on a ice hockey team and just got a new really good job to. I was not even realistically ready to work til I body had recuperated until late last summer. My advice is to for sure talk to a support group, ask you GI doctor and surgeon everything that is on your mind! Its unreal how much time and efforts goes into all this, I know, but when all said and done, and you start to feel so much better!! You will have become a stronger, wiser and better person for it all! Its like a gift know one else can understand except people who have been there. Find some first hand advice, I that would make you feel much better!
Andrew
Hi There, that sounds like you have allot o your plate to say the least. You are looking at a stem cell transplant?, wow! I have to admit that there is very little to nothing I know about that. I admire how aggressive you are being on hitting the Crohn's or UC head on. That's just the way I was and am. I have Crohn's Disease, first diagnosed in 1987, after a year of knife stabbing pain and major weight loss. When they found out, I was in the hospital in days, and I could not wait to be cut open! I was great until 2003 through 2010. I was on Remicade and Imuran, both those meds failed, just stopped working. In the middle of all that, I had the pneumonia in both lungs and was in the hospital for 5 days. I have had about 10 operation's total, and was pretty fed up. My surgeon and I both new that getting the colostomy bag would be the way to stop it and get my life back. So I did, I had my rectum removed, most of my colon and have a permanent ostomy, that was in '09. Now I am playing on a ice hockey team and just got a new really good job to. I was not even realistically ready to work til I body had recuperated until late last summer. My advice is to for sure talk to a support group, ask you GI doctor and surgeon everything that is on your mind! Its unreal how much time and efforts goes into all this, I know, but when all said and done, and you start to feel so much better!! You will have become a stronger, wiser and better person for it all! Its like a gift know one else can understand except people who have been there. Find some first hand advice, I that would make you feel much better!
Andrew
Joined Aug 5, 2009
Wed, March 07, 2012 11:08 PM
Reply posted for walkera6.
Very helpful advice! thank you!
Joined Mar 6, 2012
Tue, March 06, 2012 6:40 PM
Reply posted for jmcbrid2.
sounds like a big decision to make. are you opting for stem cell tx for crohn's to avoid having a perm ostomy? even if you had UC and had surgery there is no guarantee that your jpouch will be successful. there is always a risk of developing chronic pouchitis leading to having a perm ostomy. i would suggest you check out some of these support groups. they can help you get some advice and other perspectives.
http://www.facebook.com/FullFrontalOstomy?ref=ts
http://www.facebook.com/unitedcolonvlog
http://www.facebook.com/uncoverostomy
hope these will help you!
walkera6Joined May 17, 2011
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