I am a 27 year old female that has PSC. I was only officially diagnosed about 18 months ago, but have had the issues for 12 years. I took Accutane for 2 months and caused my liver to go crazy.
I also have Cerebral Palsy, Hearing Loss/Severe Tinnitus (Single-Sided), and Ulcerative Colitis (no surprise considering the PSC).
I started on Humira (for the UC) in April. A few weeks ago I was diagnosed with Shingles, because of my low resistance.
I have finally made a very difficult decision. I am choosing not to treat any of the diseases/disorders (except maybe for the hearing and tinnitus to keep my sanity). I know many of you know what this means. My UC will continue to progress (I am at moderately severe currently) and eventually my bowel will cease to function.
I have had a difficult year. In February I lost my 6 1/2 year old Bichon Frise. Followed by a friend in May and another friend in August. I have also lost out on moving back to the town I spent about 10 years of my childhood.This has ultimately added to my decision not to treat. For the past several years I have added a new diagnosis or issue.
It is time for me to not stand by and accept the testing/medication and doctor's visits just because the doctors say so. I have had hundreds of blood tests, 4 colonoscopies (in 4 years), 3 liver biopsies, numerous MRIs and CTs, an ERCP, MRCP, and more.
I hope that I have not offended or upset anyone by voicing my decisions. Although allowing the UC to progress will be painful, I am also a bit more at peace than I have been all year.
Thank you for listening.
But bichon mom:
You are so young don’t do this.why aren’t you try’in to find a live donor for transplant??I’m sure you can find one online by FB or Tweeter.Please do not let your UC to progress.Check the book breaking the vicious cycle by Elaine Gottschall or google Specific carbohydrate diet. It helped milions of people to stop the UC,colorectal bleeding,and diarrhea.it helped my mom,too she is feeling really good with no more bowel issues. why are you this much hopeless?Financial problems or just emotional ones?try to change your outlook to change your life!! You may live to be a hundered with your family and childern after transplant!huh???!please let us know if you’ve changed your decision.
Thank you for your thoughts. I have made the final decision, I was just trying to get an idea if anyone else has given up.
After 27 years (my entire life) has been a struggle. I understand what the people above think, but unfortunately it is not changing my mind.
It could be another 10 years until anything happens, but I have tried the less severe medications to treat the UC. I was on Budesonide for months - I told the doctor that I was responding poorly to the medication, but he didn't believe me. Finally, I went to a endocrinologist and she confirmed my fear --Cushing's Syndrome. I would have gladly continued the Humira if I had not gotten the shingles, and then a GI infection because of the medication for that. The only next option is immunosuppressant drugs and I do not want to be in and out of the hospital. Was already in the hospital for 5 days at diagnosis of UC.
I am closing the discussion. Honestly, I was hoping for less lecturing, and more understanding -- Not for you to agree with me necessarily, but not try to preach.