New to this forum but I’ve been dealing with colitis for 12 years. I’ve been on just about every med. and either they don’t work or they stop working after a while. Currently I am on Xeljanz but my latest scope and biopsies show that I still have active colitis and since I’m at the higher dose it’s been reported that I could get blood clots from this med. Therefore, my doctor wants to put me on 6mp and Simponi. I’m a little concerned taking both a Immuno suppressant and a biologic at the same time. Therefore I’m also considering surgery since I’m getting tired of trying multiple drugs and ending in failure. Last year I scheduled surgery for the same reason simply tired of being a guinea pig. Unfortunately my insurance would not cover me so I went on Xeljanz.
I’m looking for people are in my similar situation especially if they’ve either had the surgery or someone that is on both a biologic and an immunosuppressant and would appreciate any input or advice anyone could give me. I have better insurance coverage now so I would be able to go to the Cleveland clinic for surgery. Thank you
Reply posted for ZsMom.
Which surgeon did he recommend?
Reply posted for Boba.
Dr. Brett Lashner is one of the USA’s top experts on UC. He’s the head of the UC team at Cleveland Clinic. My son (& I, since my sons a teen) met with him last month and he is outstanding. Kind, patient, and in no rush to move on to the next patient. Make an appointment with him. He answered all of our questions and even recommended which surgeon he thought would be best for my son. He’s the best Dr. we’ve seen for UC- hands down.
Reply posted for Boba.
I had the j pouch surgery. Had a colostomy for three months. Hated every minute of it. Happiest day of my life was waking up in the hospital and the bag was gone.
Reply posted for Boba.
I had the j pouch surgery in 2003. Had a colostomy for three months while healing. It took About a year to fully heal. I developed Crohns about five years ago. Am currently on entyvio. The doctor I interviewed at the Cleveland Clinic was an Egyptian, don’t recall his name. THey we’re so full of themselves. When I asked how much it would cost they had no clue. When I asked about sex with a colostomy, he didn’t know and didn’t care. He was less than honest about how many times he had done the surgery.
Reply posted for charbs.
Charbs
Thanks for replying. Can you provide more information about the recovery? How long you went back to work etc.
Were you checked for Crohns before surgery?
Do you have plans for a “j” pouch or are you content with the Ostomy bag?
Last year I was scheduled for surgery before I found out the insurance would not cover me. But the surgeon who is going to perform the operation and his staff were very pleasant unfortunately he retired at the end of the year. Do you mind telling me who is the doctor you saw in the Cleveland clinic?
Thank you for your help!
Reply posted for Boba.
I had colitis and had the surgery. It’s a long and difficult road to recovery. Now I have Crohns and am on Entyvio, which doesn’t seem to do anything for me. The Crohns is not nearly as bad as the colitis was. BTW, I went to the Cleveland Clinic to see about having the colectomy done there but didn’t like it. They were arrogant and unhelpful answering my questions. I had it done at Northwestern Med in Chicago.
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