21/07/2026
My last surgery was in January of 2021. It was the last of three major surgeries in NYC in 9 months time to correct a stricture.
This was my third stricture surgery and the surgeons in CT would only agree to do a permanent ostomy. Repair was not possible I was told. I decided to look outside my state and try for a miracle.
That meant taking a train to NYC many times and staying in a hotel within walking distance to NYU, Langone hospital during the covid outbreak. (constant testing & no visitors)
I was told that repair was possible.
The first surgery was three hours long to remove scar tissue and place a temporary ileostomy. I woke up in pain that I didn't know existed because my BP was too low to be given any pain meds. No pain meds after three hrs of being gutted. I Can't even describe what that was like.
Then when I could get pain meds I was given one that I have a severe reaction to and it had to be stopped as I begged for something else instead.
This was my third ileostomy in 20 yrs. (DX UC -1999 to Crohn's -2008)
I then started my third biologic drug, and began the healing process , once again. After trial and error I asked to have the biologic drug injection bumped up to monthly instead of every 8 weeks because I didn't feel like the effect lasted.
After several months I went into clinical remission for the first time in 20 yrs of too many surgeries to count and years of fighting for my health.
I felt like a "normal" person.
I almost didn't know what to make of it. It was amazing how quickly I forgot all the pain, all the surgeries, drugs, needles, npo, agony, weakness, accidents, atrophy, fear and hopelessness.
I felt like a kid in a candy store. I still do. At first I ate salads, corn-on-the-cob and mushrooms like crazy. They tasted better than I remembered.
I got a job and had as much energy as I had before IBD.
Amazing grace.
I believe the removal of the scar tissue was a huge factor in this remission. That and the monthly Stelara shots were the magic bullet for me. Miracles happen.
Never give up hope. Never stop trying for the best outcome.
