I am a 34yr old male who has had U.C./Crohn’s for 8 years. I am recently divorced with no kids yet.. Most of my disease in now in the distant bowel/sigmoid colon.
Some more about me:
I am an Emergency Room RN. I use to travel all over United States as a travel RN. I love to snow-ski, love the outdoors, boating, football, working out and of course traveling!! I grew up in Florida by the beach and am now in Tallahassee, Fl. I am thankful for everyday I have, but am sick of U.C.!!!
Recently had 2 surgeries for peri-anal fistulas in last 4 months. The first time they put in a SETON DRAIN (SUX) and I had the pleasure of getting that pulled on every 2 weeks until I finally could not take the pain anymore! My new Surgeon discovered that this drain was in the wrong place and had lead to another fissure and my second fistula. He took it out cut a new opening for them to heal. .I now taking IMURAN 200MG PO/PREDNISONE now at 15mg PO (which has helped, but about driven my mentally and physically CRAZY!) and I just received my 4rth round of IV REMICADE.. I am still having mild bloody stool 4-8 times daily/cramping/rectal pain/weakness/loss of appetite & nausea to name a few..I am down to 165lbs from 180 lbs in last 4 months…I feel good one day and terrible the next…FRUSTRATED!
Peri-anal Fistulas Anyone?
I received my 4rth round of IV REMICADE last week and although I felt rather good for one day, I am now still going to bathroom 4-8 times per day with severe nausea. My fistula was operated on in Dec. 2012 while on work assignment. The surgeon there put in a Seton Drain without telling me what it really was before-hand. I had to drive back there every 2 weeks to have him pull on it while on an M&M pill (Lortab), which was the most pain I have had to deal with so far in my life!!! I may have dropped a few “F bombs” while it was being done, whoops..I finally got a new local MD to check out my butt and he informed me that the drain looked like it was in the wrong place and that I had developed another PERI-ANAL fistula and rectal fissure..My second one was operated on February 5th, 2013. He removed the stupid SETON DRAIN and I have been trying to recover ever since. I was still bleeding after my 3rd round of IV REMICADE and not eat ing so my G.I. wanted to me to be admitted have an N.G. tube for feeding. I respectfully refused and managed to force some food in me. I then had another colonoscopy which confirmed that I have distal disease and was flared in my sigmoid and rectum.
I have missed work since December. My blood count is still low and feel really weak & dizzy when I try to do anything physical. Anyone dealing with peri-anal fistulas and REMICADE??? How much time does it take to heal this fistula?? I go to an infusion center and they charge my insurance $17,000 dollars every time I use their services!! I am stuck with $4,200 dollars a pop after insurance…
Taken in past: PENTASA/ASACOL/LIALDA-none seemed to really work
Also been on 6 rounds of Prednisone in past (Current round has given me horrible side effects!)
Entocort has worked well in past
Tried UCERIS early this year with no improvement
Riwasa enemas which really seem to help at times
Tried Chinese herbs and acupuncture with some improvement
written by Marcus
submitted in the colitis venting area