Taking Control of the Next Chapter of My UC Story

Mark next to Elk

Me with an Elk in the background!

Meet Mark D:

I’m 55, with UC since 1975. Happily married with kids. Successful career as an architect until the downturn wiped out the industry. Now I am an entrepreneur (or unemployed depending on your perspective.) I love good food, playing music, drawing, gardening, getting lots of exercise, running, swimming, biking, squash, golf and new this year- Tai Chi!

Colitis Symptoms:

I am currently either about to have another flare up or in the murky realm of maintenance. My doctor thinks I may be in a state of mild flare for half of the year, with moderate flare needing Prednisone for about 3 months and actually in full remission for the other three. Hard for me to know what is going on down there since I have trained myself to de-stress and roll with the punches for so long. Almost every colonoscopy has shown SOME activity even when my symptoms are not suggesting.

Mark’s 37 Year Colitis Story:

Hard to say how UC has CHANGED my life since it has kind of BEEN my life. Diagnosed in 1975 with UC, making this YEAR 37! In ’74 I was a US exchange student in Venezuela for the summer, had a horrible bout of gastroenteritis while there, suffered through my senior year of high school and was diagnosed after graduation. No family history of UC but somewhat similar characteristics- history of inflammatory diseases, asthma, arthritis though. From age 10 onward I had shots for severe hay fever as did my father. By age 21 I had stopped (and once on Azathoprine I don’t seem to even get poison ivy) After college my diet became more disciplined and less beer. Beer not good for UC. Nor soft drinks. That does not mean I have completely banned them but have cut way back.

My diagnosis is full colon, moderate so I feel “lucky” reading some of your heroic stories. On and off of prednisone- twice a year minimum to maybe 4x that whole time. So much of my UC life has been about how to get off of the big “P.” Never kicked it. I seem to like stress and work, have figured out how to have a VERY active life. Eventually developed habits of lots of exercise, running, swimming, biking, squash, golf etc. but periods where I fell out of habit. Smoked in college for a year, not since.

This is my first time on this site and have generally not interacted much with other UC-ers. Not sure why not. Last couple days have been amazing reading a lot of really heroic stories from great people. (Thank you Adam!)

I have developed a stable routine and consider myself to be in generally good health, but now kind of staring down the next twenty years with some fear of cancer, concerns about costs, wondering if I have really done all I can diet-wise, not wanting to make radical changes that would create even worse problems. I still eat a lot of stuff I should not, take a lot of lact-aid pills, anti-gas stuff, suffer after pot-luck dinners and junk food or spicy food I should no better than to eat. Amazed how dumb I am sometimes. But I do not like holding back.

Considering doctor suggestion of Humira or Remicade as next step.
Or have my old friend the colon taken out and put on display in a museum.
Or do another run of prednisone etc etc.

I think all of us UC-ers have very different levels of the disease, so I guess I am curious about what my potential is for doing more than I have, and after that, how can I make the best medication decisions that will keep risks low. Interested in hearing about everyone else and seeing if there is anything I can offer, mostly in terms of “this worked for me but it may not work for you”

Family’s medical costs (mostly mine) ran to US $20,000 last year. So my current challenge is balancing health and economics and trying to gather a more comprehensive picture to guide my next step. My current insurance plan- individual insurance with a $5000 deductible changed the way I see my medication. I have a 30 day supply of Entocort sitting at the Pharmacy as I write, and the price tag is like one thousand three hundred dollars, which I may pay for out of dwindling life savings. I bought a pack of cigarettes today and have a feeling that I might save that thousand bucks, also realizing I will probably be back on a run of Prednisone by the end of the year…

Where I’d like to be in 1 year:

I would like to be completely cured, in the best health of my life, with enough discipline to maintain routines and diet that I want, and without worrying that everything I do is somehow going to trigger a relapse.

Colitis Medications:

First twenty years- prednisone and sulfasalzine. ups and downs. denial. family suggesting that it might be various foods.

One doctor recommended Metamucil, which often helps still.

Also during that period doctors were not sure if the whole colon was involved (it is/was). I have had active proctitis as part of UC. so when through several years of intermittent use of cortenemas that only really seemed to work about ten percent of the time. and not fun. More proctoscopies in those days and fewer colonoscopies.

Then Asacol replaced Sulfasalzine and I really felt better somehow. Sulfasalzine seemed to cloud my mind, and of course I did not miss the bright orange urine.
About five years ago? More? I added azathoprine and then Entocort to the regimen.
Then Lialda replaced Asacol. (all generics now)

So now I am on:

  • Lialda 2@ 1.2g pills twice a day
  • Entocort 3@ 3mg caps once a day
  • Azathoprine 2@ 50mg pills once a day
  • and folic acid and multivitmins

I have to say it is by far the best maintenance regimen ever, and my bad flare-ups are much further apart, and I sense my mild flares are basically controlled enough.

written by Mark D




Ulcerative Colitis Tips


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azathioprine, entocourt, lialda

18 Responses to Taking Control of the Next Chapter of My UC Story

  1. Dallas October 23, 2012 at 12:29 pm #

    Damn! 37 years with UC and you still have your original plumbing? That’s a hell of a run! I think I would have let the tail pipe go a long time ago. I like food too, but I am coming to the realization that not everything is beneficial for the long run. Probiotics seem to be helping and I take 4 pills of Lialda everyday. I somewhat try to remember the SCD diet, but that doesn’t always work. I have removed soda and sweets from my diet and that is a huge help. It’s funny you mention insurance–every month when I pick up my Lialda I notice the sheet that tells you how much you save because of insurance–it’s somewhere around $865 a month! Scary how much it costs to fight this disease often with minimal results.

  2. K October 23, 2012 at 3:29 pm #

    Hi Mark,
    I too was diagnosed with uc in 1975 (when I was 32) and hospitalized. But from there our paths diverge. My colon perforated 3 days later – so out it came that afternoon. The rectum (considered pre-cancerous) came out the next year. So I was completely cured.
    Have had “the bag” (a term I both love and hate)for almost 38 years now. Guess all this doesn’t really help you, but reading your account and so many others make me so grateful for my surgery. This cruel and horrible disease was over quickly for me.

  3. Adam
    Adam Scheuer October 23, 2012 at 9:23 pm #

    Mark,

    Thank you so much for adding your story!

    I read it twice today during work, and man oh man, way inspirational to hear from a 37 years of UC UC’er like yourself!

    Thanks again, and wishing you the very best moving forward,

    -Adam

  4. uma October 24, 2012 at 5:04 am #

    Hi Mark, My UC is 22 years old and i am still doing pretty good. You must add probiotics along with your meds makes a huge

    difference. Good luck.

  5. bev October 24, 2012 at 6:27 am #

    Hi Mark…

    Probiotics!! I am in complete remission now…and I have moderate pancolitis!! I’ve had UC for 15 years and I’ve never felt better. Really.

    I started a good probiotic some 8 months ago, just for shits and giggles, and after a few weeks, felt so good, I discontinued the asacol that I was on for 13 years straight. I’ve never looked back…

    If you can read my posts…please do. I take the one probiotic capsule, and a scoop of L-glutamine (which took away the bleeding finally) everyday, along with a capsule of astaxanthin (a natural anti inflammatory), and some vitamin D. That’s it! No med side effects for me anymore!! I’m also not ready to lose my colon, so I’m really glad that this new ‘natural’ stuff did the trick, let me tell you!

    Great story…thanks for that. Very inspirational, despite what you might think. It gives teh rest of us hope, taht we can hold on to our colons, even after years with this pain in the ass disease.

    Cheers:)

    • Jed
      Jed October 27, 2012 at 8:25 am #

      Hi Bev,

      Congrats on discovering what works for you and being able to drop the meds, fantastic stuff.

      Are you now able to eat whatever you want? So, cookies, sweets, chocolate, fast foods, pizza etc???

      Thanks, Jed.

      • bev October 27, 2012 at 8:54 am #

        Hey Jed,

        Why, yes I am!! I eat WHATEVER I want and desire…no joke! I have been cautioned by others on here, however, to go easy…

        I just feel like I am cured now. I’ve gotten out of flares before, but never felt this good or normal. I really feel like no food would set me back at this point. I’m really not convinced that foods are triggers, for me, anyway. I am much more worried about having to take antibiotics, or even get a flu shot, now that I am in such fab remission. I usually get a flu shot every year, but because I am doing so well right now…I am skipping the shot this year. I talked to a pharmacist, and told him I usually flare every fall and winter, which just may correlate with that flu shot? He wasn’t sure, but said that I should do nothing to upset the apple cart.

        I guess what I am trying to say is that I am much more concerned with ‘drugs’ or meds starting a flare up again than I am with any food, that’s for sure! Even cold medicines, pepto bismal, advil, etc should not be taken by us UCers! I have been eating whatever I want, although most of the time I eat quite healthily, I still have pizza on the odd weekend…with everything on it by the way (!), or a burger and fries ocasinally, and nothing bad happens at all!! Just for anyone’s info…I have never drank pop or alcohol…in case that matters. I have heard that alcohol can be a trigger. I do drink wonderful espresso from Starbucks everyday tho, and have never had any issues with coffee at all!

        Cheers:)

        • Jed
          Jed October 27, 2012 at 9:14 am #

          Sounds fantastic. I gave the SCD a shot and it did change things noticeably. But my current circumstances simply don’t allow/enable me to follow it with the strict adherence required, so until I am in a more constructive environment for that, I can’t continue to follow it strictly, but I am staying as close to it as possible for the time being.

          I REALLY miss just being able to gobble down whatever whenever and I have a sweet tooth, so this is sometimes difficult to ignore.

          Anyways, will have a look at our other posts for the probiotic capsules you’re using and check the availability of the L-glutamine over here in Korea. I’ve never tried any supplements, but I have used the SCD 24hr yoghurt once or twice.

          Thanks, Bev!

          Take care… x

          • bev October 27, 2012 at 10:27 am #

            OMG, Jed!

            Anytime! I have been trying to shout what has worked for me from the proverbial rooftops! I hope people aren’t getting tired of me…I can’t seem to help myself. I was sick with UC for SO long and I remember how hopeless I felt at times. I just want us all to live like we all should and deserve to. Disease free. I believe in my heart that it is possible for that to be. Somewhere along the way, our flora got f’d up…and it seems like the only answer is to regenerate or repopulate it. It may take time, but I think it’s the key to actually beating this disease for good. Once and for all.

            Korea? Wow. I’m sure you can find a good probiotic there, if not the very same one. It’s a forward country…at least the south is!

            Cheers x

    • Mark D. January 16, 2013 at 9:33 am #

      thank you BEV!

      And thank you Dallas and K and shelly in Maine and efim and ADAM!

      thank you so much for commenting. I guess I never checked the box to be notified of comments so am just seeing all this today.

      I just downloaded Adam’s book and cookbook. Finally! and read the first 50 pages. So glad I did.

      I am going to start probiotics like you suggested and some form of SCD (will be hard to disrupt the decades-long family meal and cooking routine. a blessing and curse of being “moderate” rather than severe maybe. and an excellent cover-up artist.

      The one think that really strikes me from returning to the site and reading the book is the power of habit formation and the habit of DENIAL!! Amazing how we sort-of make commitments to change and then YEARS can go by and then one day POP! you are committed to a habit. Recently read the book The Power of Habit and my biggest takeaway is how little we understand about how habit operates, and how easy it is to form habits and break them. I’ll try to share more of that soon because I think it is key for this group.

      Bev- your point about “…Somewhere along the way our flora got f’d up…” I believe will turn out to be a fundamental truth about UC. Maybe not all f’d up by the same process or event. Maybe there is or will be some research that takes roll call of all colon bacteria to see what is missing – like the Human Genome Project- except for our poop. Is NIH listening? In the mean time it’s worth trying to repopulate down there and hope that something grows back?

      I also think that there are trends of flaring and unflaring related to getting some bacteria established. That getting more regular tends toward getting even more regular and getting more flared up trends toward more flared up. I live kind of in the middle of that battle all the time. The most amazing thing that sometimes happens is a sort of reset after having a ten-poop day and being completely empty I can sometimes feel pretty great three days later and have an amazing bombing logs day like a normal human for a day or two. Or not.

      RE: My little experiment I may or may not have had with cigarettes since my October post :) I noticed I distinct improvement of symptoms with about 5 a day, while still being pretty athletic. But there was some slightly noticeable differences in breathing. duh. Then discussed idea with doctors who acknowledged the connection exists but can’t support the idea. duh. Then at the end of December thought- what the hell am I doing!!! So I stopped. I don’t think it can be justified by all the other bad stuff, and even though I knew that intellectually I just had to see for myself since I am in this period of experimentation.

      Thanks again y’all. I promise to spend more time here now.

      • bev January 16, 2013 at 10:17 am #

        I completely agree, Mark. This whole bacteria thing. Where, when, and WHY did it go wrong in each one of us? One has to wonder…there seems to ba an AWFUL lot of UC turning up these days…

        Please keep un engaged with your thoughts and conversation. Perhaps it will be one of us that figures this whole sordid condition out! If we keep brainstorming with each other, you just never know.

        :)

        • Youness January 16, 2013 at 12:16 pm #

          yes it is an amazing idea to figure out between where did it all go wrong ..

          here I go first..
          I am a 30 year old single guy , non smoker , athletic , love my beers with some football
          I got UC it when I was 27 years old ,
          the year before I had a hearing loss problem and used heavy prednisone .
          I always went heavy on OTC drugs , whenever something hurts even a little bit a took a pill ..
          I went through a very stressful period prior to my UC ..
          I am pretty sure that narrows it down..

          • bev January 16, 2013 at 12:25 pm #

            I strongly believe that too many OTC meds…stress…illness…antibiotics…prescription meds…can all cause or contricute to getting UC.

            I had alot of strong antibiotics as a very young child due to badd tonsils. Actual injections in my butt way back in the 1960s. I took accutane (read the literature on that medical gem) four different times in the 1990s. I am positive that I got UC from those two things. I think I kept it at bay until my 30s due to my smoking habit. After I quit, the UC came flooding out…

            How sad that we are stuck with this condition…if only I had known about the accutane. The UC that accutane can actually cause was not written into that drug literature until almost 2000. I took it in the early, mid, and late 1990s…Of course, I could do nothing about the antibiotic injections when I was 4 years old. I had no say or choice then. Too bad for all of us who just didn’t know…

        • shelly in maine January 16, 2013 at 4:21 pm #

          Bev, (I wanted this post to go down below, but out of room)
          What’s interesting is that my uc seems almost completely genetic…I was never really sick, never really on meds/no antibiotics, lots of ibd runs in my family…and diagnosed early but I remember having symptoms forever! And here I am 30+ (well diagnosed) years later….hmmmm. just all seems so interesting. I refused to stay on meds when I wasn’t having symptoms and I think that really helped me get more mileage ut of thhe meds. I don’t know….still struggling with this flare…trying two new herbs along with 95-98%scd…
          Like you said…we’re all part of the solution. Feels like a bad science experiment! :-)
          Well food for thought!!
          Best, Shelly

          • bev January 16, 2013 at 4:37 pm #

            Yes, Shelly, and then there seems to also be a genetic component…which I didn’t include in my post.

            That is the most unfair, I think, the genetic component…no choice at all there, right?!

            :)

        • shelly in maine January 16, 2013 at 4:51 pm #

          Yes the genetic piece and when little babies/children now…seems back to meds, environmental,stuff mom’s pass on through foods-pesticides, chemicals on foods, cleaning products, clothing, bpa, nonstick cookware, etc, etc, etc immunizations???Seems more prevalent nowadays. Way too many antibiotics for children….?

  6. Efim October 26, 2012 at 12:56 pm #

    Hi Mark! Ive been battling with this horrifying disease for 15 years. your story is very inspiring and its nice to know you still have hope. I started a new diet named Specific Carbohydrate Diet about four months ago and it seems to be helping a bit. Do you use any specific diet?
    Good Luck!

  7. shelly in maine October 27, 2012 at 4:09 am #

    Hi Mark,
    I’m right behind you with 30+ years and still fighting! I have been Med free for over a year and struggling/fighting right now…I am all out of Med choices anyway so the fight is harder than ever.

    Probiotics are definitely key.

    Sounds like you already know what to do about your diet!! Guess you needed to vent it and see I in print!

    Keep using this site as inspiration and resources! Good health, Shelly

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