Five Decades and Still Winning!

Intro:

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…

Symptoms:

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

Adam Scheuer, founder of iHaveUC.com

Adam Scheuer, founder of iHaveUC.com

Ask Adam:

“Anyone have experience with SIMPONI, and how long it takes to start working?”

Hey Scott,

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:  http://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:)

-Adam

10 Responses to “Five Decades and Still Winning!”

  1. bevMarch 21, 2014 at 1:38 pm #

    Sheesh, Scott, your UC journey has been a long one hasn’t it?! I can’t imagine what those 70s ‘colon probes’ were like…ouch.

    I have had UC for about 18 years, and so far have only been on asacol and steroid enemas…never oral steroids (because I even reacted badly to the enemas) or biologics. I am so darned sensitive to meds that I could never even think about trying those. The asacol actually made the UC much worse, for years, and I just thought it was the UC itself.

    Anyway, long story short, I am not on any meds any more at all, being the overly sensitive person that I am. I am fortunate in that probiotics and L-glutamine are keeping me in remission…really for the first time in the whole time I’ve had UC. Very lucky…I know.

    Thank you for telling your story. It will help a lot of people. We tend to think that colon removal is the only way to get rid, and is always the end result. I still sometimes find myself believing that it just may be, when people who have had their colons removed say that. I sometimes think…what am I waiting for…am I just delaying the inevitable? Then, someone like you comes along again, and shows us all that it is not inevitable at all. We can keep our colons, we just have to sometimes medicate them, and always baby the heck out of them!

    Cheers, and the best to you with the biologics…they help a lot of people!

    Bev
    :)

  2. Victoria MarieMarch 21, 2014 at 5:31 pm #

    My grandmother was a matron in the hospitals and I recently found an old nursing dictionary that belonged to her, at least Ulcerative Colitis was mentioned in it “no known cause” guess we still have to work on that! Thank goodness we have had advancements in treatment since only having two medications you talked of, this is hope for the future that we will find a few more.

    What would your one piece of advice be to those suffering both Ulcerative Colitis and Crohn’s Disease? How on earth do you keep going after such a long struggle?

    All my love xx

    • ScottMarch 22, 2014 at 7:50 am #

      The one piece of advice…….hmm…..

      There is always someone worse off than you.

      Seriously. Read some of the stories on here, and you can see that there is always someone in this world that has it worse than you can possibly imagine. Not UC, I mean in general. Sure, we have to stop at every known bathroom in the world. Sure, we have some days where we see every damn commercial for pizza when we feel like death.

      We have our life. We are alive and breathing. We can breathe, we can see. We have use our of arms and legs. We can speak and think properly. We are in control of everything except when we have to poop.

      Pretty small on the grand scale of things.

  3. KIM LUGLIMarch 22, 2014 at 5:02 am #

    Hi Scott – Greetings from Kim
    in Johannesburg South Africa.
    Hey what a story and you still have your colon and 6 kids to boot,well I have ben living with LUPUS that was diagnosed in 1976 given 1 to 3 yrs to live and at 71 yrs I am still here,although fr the past 7 yrs I have LUPUS in the Gut with all the symptoms of UC,IBS etc and this is my reason for joining the group as there seems to be nothing on LIG and I must tell you that the stories are really inspiring for me
    to date I still have my colon and at my age I guess I will keep it
    but I just wanted to say Good for you and “Keep,Keeping on”
    Kindest Regards,Kim

  4. Tara B
    TaraMarch 23, 2014 at 1:01 pm #

    Thank you for sharing Scott! I agree on having a sense of humor! I have to make jokes sometimes when I get scared or worried just to make myself feel better. You give hope to many UCer’s out there! I hope everyone reads your story!

  5. shelly in maineMarch 25, 2014 at 5:52 pm #

    Hey Scott,
    I’m right behind you…haha! :-) I was diagnosed by the time I was 15, on sulfasalazine about 2 years before that and symptoms as far back as I can remember. My tests, thankfully reached a more advanced time period…but still never pretty. AAA nice to know there are lawsuits for the fleet phospho…that stuff still makes me quiver to think about as does the barium enema how long can you hold it in test!!
    Anyway, been through all the meds including biologics-remi and humira…allergic and intolerant to all meds now. Been off meds for over 2 1/2 years with help from probiotics, SCD, fish oil, vit d, , some Chinese herbs sometimes. Still hopeful to keep my parts, too.
    Thanks for you post. Wishing you all the luck with the Med.
    Best, Shelly

    • AdamMarch 26, 2014 at 9:37 am #

      Shelly,

      just an fyi:)

      You just quivered me with these ten words:

      “barium enema how long can you hold it in test!!”

      Thank you for that quiver,
      Adam :)

      • shelly in maineMarch 26, 2014 at 12:47 pm #

        Hey Adam…glad I could give you a laugh and not so much on the quiver! ;)

        Hope you and Michaela are doing well. We are having another blizzard…got out of school early…the up side! :-) But hey..that’s Maine…ayuh! :-)

        Best, as always, Shelly

        • AdamMarch 27, 2014 at 2:00 pm #

          getting out of school early!(always good news:)

  6. SteveApril 23, 2014 at 7:50 pm #

    Totally inspiring Scott. I was diagnosed with Crohn’s when i was 2 and now I’m 33, having a flare. Seems like after years of not being on meds, I have hit a bad stretch here and now taking entocort and Starting Humira. In any event, your story gives me hope, that a long life is possible with this :)

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