I am in my 5th…yes that’s right, FIFTH decade of disease!
I was diagnosed at 15, and at 53, I am just starting biologics, and I can tell you that this is something you can manage over your life. It’s been rough lately as I get older, but I learned how to roll with those punches. I was always lucky enough to respond to my meds and briefs bouts with steroids, but now as I get older it’s time for the big guns as I get less responsive to all the options that are out there. I have fortunately avoided surgery.
Some more about me:
I’m from the Chicago area and married with 6 kids (3 from a previous marriage), 3 step kids from the current one. I am in the medical field, a former firefighter/paramedic, now working for a medical practice. I have spent years working on never having my UC stopping me from doing anything…including hiking, biking, and just about anything else.
I do stained glass, photography (weak attempts at astrophotgraphy), and try to keep myself busy with just about anything that my wife won’t yell at me for. I’m an avid reader.
Having a sense of humor really helps with this disease…let me tell you…
Ah yes…the dreaded symptoms box……
Does being in the bathroom 12 times a day count? I gauge how much I can read on how bad my stomach is. If I’m not reading a lot, then it’s obvious my stomach is fine…I’m not in the bathroom! It gets to be a baseline where you are almost used to your stomach having a dull ache, you know?
Does anyone out there ever realize that they are actually reading in the bathroom not to read, but to keep their mind off the stomach ache?
Five Decades and Still Winning!
When I started in the mid-70’s there were only TWO drugs available for the disease…steroids and Azulfidine, and I was deathly allergic to Sulfa..which left me alone for years with steroids. I was on them for years, and had every painful and dangerous imaginable side effect from them. It was a very brutal time in the 70’s in high school (I mean seriously, isn’t high school bad enough without 40 pounds of water weight and acne?!?), yet I barreled through it.
There were also NO colonoscopies then…..just the old fashioned Spanish Inquisition proctoscopes….bend over and inflate with air, no waiting. I believe I was one of the first that had one in the late 70’S early 80’s in a teaching hospital in Chicago, I remember a lot of students hanging around watching it. Nothing but a 2 mg Valium orally, relax and have a nice day.
On and off over the years I went in and out of remission, then Asacol and the Rowasa came onto the market and that held me for longer times with no use of steroids. I started to have less remission times, and Canasa came onto the market which helped the terminal end inflammation (proctitis) that I was now having more and more problems with.
Over the last ten years however, I was put on Lialda and Rowasa with the Canasa, and my flareups have never really gone away…just been low level and I have been basically ignoring them as just an IBS component…you know, we ALL do that. Finally, I have realized that this is going nowhere, and I really haven’t felt good for years, and have been a slave of staying put sometimes because I didn’t trust my gut if I needed a bathroom…so it was time to get help and go on SIMPONI.
I was very afraid of the side effects of biologics, but really researched it out. When long term steroids are considered malpractice and these biolgics are not, there is a point there. I am at the point where I am so sick…I really just want the relief now, and am looking forward to it all!
What a long way we have come, and what I have seen in the last 37 years……amazing.
written by Scott Z
“Anyone have experience with SIMPONI, and how long it takes to start working?”
Thank you so so much for sharing your story, but its much more than a story. It reads like a history of UC from the patient perspective over the last several decades. Good thing they didn’t have facebook and twitter back when you got probed with the students all watching…I’m sure someone would have snapped a photo and tweeted “look at this poor guy testing out our new camera..” Aye yie yiii. I’m glad you have made it through with such a positive outlook.
As for Simponi and your question, here is a page you can go to, there are 3 different patient reviews listed within the body of the story. You can feel free to add yours as well so we can get more up there. As you know, Simponi is relatively new, however, I’m guessing there’s thousands of UC’ers who have used it already.
Here’s that link: https://www.ihaveuc.com/simponi-approved-for-ulcerative-colitis/
Thanks again for sharing, and best to you in the decades to come (and best of luck with the six kids:)