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ATTN: People Feeling Like UC Has/Will Consume Your Life

Introduction to the Artist Jim:

I was diagnosed this past June with Ulcerative Pan-colitis. Suffered a major flare all summer long. Started feeling better at the end of august and was able to return to school. 3 months into school and finally in complete remission after being on Immuran for 4 months.

 

Jim’s Incredible UC Story:

Hello fellow sufferers.  I’m writing this to try and bring hope to all of you people who really need it right now, I’ve been there. This is especially geared towards people new to the disease and feeling pretty much hopeless, I want to remind you that theres a life outside of this disease and you will get back to it. My names jim, im in my second year of graduate school studying architecture, and 4 months ago i never thought id still be here. If your on this site and reading this you’re probably looking for a bit of hope, tired of uncontrollable runs to the bathroom, late nights, taking medication that doesn’t seem to do anything but make you feel worse, etc. This is how I found this site and god did it make things a bit easier to deal with, but the fact is i was still having to deal with it, which SUCKED. So i’ll tell you my story but the truth is I’m sure it’s very similar to a lot of yours so I’ll run through it as quick as I can, I know it can be relieving to hear others stories.

james colitis abuse

a tape mural i did inspired by the disease

After being diagnosed I was immediately placed on a high dosage of prednisone and Asacol. I was still going to my summer job, trying to make things appear as normal as possible. The Asacol was making it worse (more blood, more urgency) so I was then put on Lialda which I had an immediate allergic reaction too. I finally quit my summer jobs after i couldn’t even walk up the stairs to my office anymore and was violently using the bathroom every hour, 24 hours a day. In total i spent about a month on these drugs which did nothing but make things much worse. Throughout this process i found this site and started the SCD diet. I was on it for a month and found that it didn’t work, i was also dangerously under weight (99lbs instead of the usual 140) and needed to get some back, which is really hard to do on the diet. I was reallllly disappointed it didn’t work. Adam was really helpful in providing information to me about his experience with the diet and i have to say i really had high hopes for it. But it just doesn’t work for everyone and I had to accept it, which was difficult.

I was finally put on Immuran which i was skeptical/worried about. By this time the prednisone was in full effect and i was getting “better” (steroids are a temporary, yet magical fix) and was able to return to school, after spending my entire summer in my bed.

So things kept getting better and now I am 100%-ish in remmission (enthusiastic “yay”).

The doctor says the next step is to try the Asocol one more time, and try to get me off the Immuran because its a much safer drug long term. So thats my story but back to my point.

I just want to make sure you all know that flares end.

I’m also aware that 4 months can be a short flare compared to some iv read about on here but i do think it gives me a license to instill hope, mainly because i had lost it during my flare. All of it. I ended a fantastic relationship because i was too embarrassed to talk about it and am now dealing with some repercussions of that, which has me thinking a lot of what I went through.

So here’s a metaphor I’ve been working on and I’m sorry if it offends anyone for any reason:

Colitis is an abusive spouse, it marries itself to you, kicks the crap out of you, and then it leaves you flat on your ass only to think about what it did to you. So here’s my advice. Make it so that you can eventually look back on it (which you will be able to) and know you handled it the best you could, that YOU kicked ITS ass. Eat healthy, do yoga, TALK TO FRIENDS, make potty jokes, whatever. Try and stay positive, easier said than done. Stay in touch with your doctor. If you don’t think a drug is working, call his/her ass up and tell them to do something about it. Try diets. It should be your mission to beat the shit out of your UC.

Good luck to everyone.

And a thanks goes out to Adam for starting this interweb commune of toilet abusers.

 

Colitis medications:

Prednisone
Asacol
Lialda
Immuran
Some sort of Rectal foam
Iron Supplements

 

Submitted by “Jim” in the Colitis Venting Area




hope

13 Responses to ATTN: People Feeling Like UC Has/Will Consume Your Life

  1. Tara November 18, 2011 at 9:47 am #

    Thx for sharing. I needed to hear this. I’ve been in a flare for the past 3 months. In this time I’ve been hospitalized, out of work for weeks at a time and just recently had a colonoscopy that showed my UC has spread and I now have pancolitis. I feel hopeless, sad, upset and I just want to start feeling better. I’m glad you’re in remission I hope to be there soon as well. Thx for sharing. Tara

    • Peter NZ November 18, 2011 at 4:51 pm #

      Hi Tara,
      As Jim says: it does get better

  2. Rebeka
    Rebeka November 18, 2011 at 11:17 am #

    Thanks Jim. It’s so nice to hear… and you were right, gearing your message toward newbies who are still in their flare. I was wondering too, how long can this possibly go on? No one can tell you of course, it is a rollercoaster ride. You think you’re getting better but the next day you’re not so sure anymore. Good to hear, someone actually did enter remission after a few months. I’m glad I read Jim’s story! Tara, you will get better too (and so will I) Sorry to read the UC spread. Sometimes it’s so tough to be optimistic anymore. I’m sending positive thoughts to you.
    Good luck to everyone!

  3. Vicki Thomas November 18, 2011 at 11:55 am #

    Thanks for this Jim! I definitely agree with you. Talk about your ulcerative colitis – don’t be embarrased by it or hide. I was on Imuran for four months and it made me very ill – so now I’m just on Asacol and have been in a remission for five months now. I’m a big fan of Asacol. I’ve tried all the drugs as well and did a stint in the hospital.
    Keep up your positive spirit – I think this is a big part of “beating” this disease.
    cheers,
    vicki

  4. Blake November 18, 2011 at 1:41 pm #

    Right on Jim, sweet mural. I’m in a 4 month flare right now, just got Remicade a few days ago, shit got worse on me. Just bumped up my steroid abuse to 60mgs today, back to shitting terds instead of pieces of colon, but have already went about 15 times today. Isn’t it amazing how much shit you can produce only from eating very little? I really hope this Remicade works it’s magic soon, hopefully the 2nd infustion will help. This disease sucks soooooooo bad. I can honestly say, and I think others who’ve had really bad flares would agree, that sometimes I wish I would just die. The thought naturally crosses one’s mind, but I know that’s not the way to go. Keep fighting this asshole of a disease. Try to remember how you beat it cause it will probably come back. Thank God for this website so we can know others are going throgh it and having positive comebacks. Can’t wait to write about mine, hopefully soon.

    Blake

  5. Shirley NZ November 18, 2011 at 11:51 pm #

    Hi Jim
    I have seen a mural like that one before, it tells a story. I was diagnosed 2009 after finally being admitted to hospital and a colonoskopy. I was back in hospital 2010, and back on big doses of prednizone plus pentassa, then they introduced for me a new med asathorprin. It took about 6 weeks to feel any sort of relief, in fact I got worse after coming out of hospital. You would have thought I tipped a whole bottle of red wine down the toilet bowl, it was very frightening. the next 6 months I started to improve, and by April this year I was feeling great. It became like I was normal again in all and every way. I had eased off all my medication never expecting to see this horrible disease again. I had 3 wonderful months of being normal, then the shi..t hit the fan, that nagging pain started and it was all go again, back on the toilet,the meds, but at this stage not prednizone so still have that if things get worse. I started the scd program too in 2009, but after 16 weeks and no relief I stopped and have since tried other options. I do think it has a lot to do the food we eat. Adam has done us good starting this site it is good to relate to other UC’rs

    • Peter NZ November 19, 2011 at 5:57 pm #

      Hi Shirley NZ,
      I was on Azathioprine and after a while it apparently surpressed my bone marrow. This was detected in regular blood tests and I was taken off it. Are you having bloods regularly?
      Cheers,
      Peter

  6. Dede November 19, 2011 at 7:46 pm #

    Hi Jim, yYou are right–it is awesome to read your iece, as so much time is spent feeling lonely, on the toilet, etc., and it’s great to hear some positive news. How does Immuran work? Is it an immuno-supper sent drug? I have Crohns, but also tried the SCD, and it was surgery that finally got me into remissin. Plus a lot of hard work! Listening to your body is one way to start getting better: like, oh, if Instay up all night working, then drive 4 hours for work, and eat fried food– maybe I shouldn’t do THAT again!

    I had about two feet of lar,ge and small intestine removed almost six year,s ago. I follow a very strict regimen–no wheat,ball simple, locally grown foods, probiotics, flax seed….lots of sleep and six miles of walking- running almost every day, except one day per week. Hang in there, and keep making art! I went to see a play last summer, calledn28 Feet by Jon Mirrin, and it was funny and well dine. Using art for expression, and tongivenvoicento these insidious diseases is an amazing thing. I loved seeing you mural. Thanks”

  7. Jonz
    Jonz V. Stoneroad November 21, 2011 at 6:01 pm #

    Thanks for posting such an inspirational article and as an artist myself, I can truly appreciate finding a means to escape and then use art to help share what you are experiencing. Now you are inspiring me to go back and do my own art again. Thanks!

  8. Jim
    Jim November 22, 2011 at 8:19 am #

    Thanks everyone for the compliments! Dede, your right Immuran is an immuno-suppressant and basically lowers the fighting capabilities of your immune system. I was really skeptical about it since ive read a lot of horror stories involving it but my doctor had a ton of confidence in it and he was right to. Shirley, i also believe it has a lot to do with the food we eat too. even in this remission-ish state my diet is limited, the only difference is im able to enjoy certain foods i couldn’t eat every now and then (in all honesty i treat myself prob like 2 times a week). Blake, the thought of just dying most definitely does naturally cross ones mind but believe me, when you look back at it that option just seems totally ridiculous. This whole thing is gonna be a struggle but in the long run it makes you stronger.

    • Mary Anne November 23, 2011 at 9:15 am #

      hi–thanks for sharing the story and the mural. I hope you are doing well! I was just wondering–which asacol are you on, EC or HD? My husband got a different job with only %50 pharmacy coverage and I had to stop asacol EC because it costs us about $400 per month. It put me into a flare-up. I got a free asacol HD for one year coupon, but the HD kind makes my symptoms worse. Thanks.
      Mary Anne

      • Jim
        Jim November 26, 2011 at 11:25 am #

        Hey Mary Ann. To be honest im not really sure which one i was on, i wasnt even aware there are different types. It seems like neither of them are working for you though so i would suggest telling that to your doctor. Theres a few other options before you have to start thinking about the woes of Immuran or Remicade. Good luck!

  9. Channelle June 29, 2012 at 12:39 pm #

    Hey Jim. I smiled the whole time I was reading your story. I am sooooo happy you are doing better. I am just starting to feel 100% comfy with talking to others about what is going on with me compared to my 65%. I love your art work… I draw and paint also. This stomach problem is such a struggle and I’m glade you are looking on the bright side. I am as well.:-)
    Be good and good luck to you.

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