Have often visited this forum over the years but have never posted.
I just wanted to say that everyone here is such an inspiration with their desire and will to overcome such an awful disease.
-48 year old male
-diagnosed at 26
-good and bad years like others
-was on asacol, imuran from 97-2006.
-GI gave me Remicade in 2006 and went into remission almost immediately. Unfortunately, he was not a good doctor and wouldn’t give me any maintenance doses.
-flared up again 2008 and was given Remicade again which worked. The next dose after that have me an allergic reaction and Remicade was done for me.
-switched GI’s and my new one gave me Humira which worked really well for many years.
-my problem was always strictures near the rectum from scar tissue.
-GI scoped me in April 18 and perforated my colon. Had to have emergency surgery ( first ever surgery of my life) and ended up with a colostomy bag so it could heal. 1 day after getting out of the hospital, I sneezed and herniated myself along the incision.
-has lots of output problems with the Stoma in fall of 18 and had to start self-dilating everyday.
-May 13,2019 changed my life. Had my colostomy reversed , hernia repaired, they found a parastomal hernia and had to repair that too, also had to resection part of my small bowel as it was all scar tissue. Woke up and couldn’t believe they were able to repair everything in one surgery. The nurses even had to put a note on me in the recovery room which said “ no more bag” because I didn’t believe them since I was high on the meds.
-first 2 weeks after surgery were the most painful thing I have ever experienced ( worst than the kidney stones I had in 2017). Didn’t know that having a colostomy bypasses the large bowel which meant it hadn’t been used in 13 months. Luckily, I was still passing mucus everyday for those 13 months so sphincter muscle stayed in shape.
-This Monday will make 8 weeks since my surgery and the incisions are fully healed and the stomach and plumbing is functioning 100% normal. Only lingering effects are still a little tender from the hernia repairs, a little swollen, and a few more weeks of wearing a hernia belt.
-2 major surgeries in 13 months made me reflect upon my life with CD and I wish I would have eaten healthier and never smoked ...perhaps I could have avoided the surgeries otherwise.
-proud to say I quit smoking cold turkey when I had the emergency surgery last year and have never had a craving since. The surgeon said quitting smoking was the best thing I could do to increase my chances of the reversal.
-currently, all scar tissue and diseased sections of my crohns have been cut out and I’m in full remission without even being on humira due to the surgery recovery. Starting Humira again in 2 weeks
Now, I am trying hard to work on my diet and treat my body better. 13 months with the bag was quite the sobering experience of how I should have been kinder to my body over the years.
Happily, I am in very good shape and have the vitals of a young teen since I quit smoking
. Couldn’t pick up my 3 year old daughter for a year due to the surgery/hernia and can’t wait to pick her up again in a few weeks.
I wanted to say thank you to everyone here for being so brave and sharing your stories...