Fourteen Years as an Ulcerative Colitis Patient

Today is 14 years since I was diagnosed with ulcerative colitis, a type of inflammatory bowel disease.

As I sit here thinking about what specifically I want to say about today, I am just left sort of speechless in a way. I think I make it known that this disease changed every aspect of my life.

My anniversary post from last year goes into more detail about the day I was diagnosed, which you can read by clicking on the link below:

http://ow.ly/3mqHtx

I guess the one thing that keeps coming up in my mind is how you approach newly diagnosed patients. There have been multiple conversations and events about the need for patients to be educated, “own their disease,” and understand everything that could come down the pike so you are never surprised.

Maybe I am in the minority but I keep thinking back to this day fourteen years ago. I was 13 and immediately put on high doses of prednisone. Things came on suddenly and fiercely. And then I was hospitalized soon after. I didn’t have time to read brochures or anything like that because I was too busy living it. I figured out how to be an IBD patient as things occurred

It wasn’t easy missing out on so much and having to micromanage and even think about things I never would have otherwise. My life for the past fourteen years has been torture. And had I known what was in store for me, I would’t have been able to maintain any semblance of hope. I had a ton of it for the first five years or so.

My point is this: I am so thankful I wasn’t forced to read up on everything related to inflammatory bowel disease. I am so thankful I wasn’t given literature about all the potential issues that could occur.

There is a balance between wanting someone to be an educated patient and not wanting them to worry about things that may never happen. And as we all know, worrying will only add to the mental health part of this chronic illness and have no affect on the outcome.

It is so great to see how different things are than when I was diagnosed in 2000. Obviously, we have so much more to go but I do see progress in research. I just hope something comes from it.

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  • Jodi

    You make a great point. Sometimes, ignorance is bliss. Maybe you wouldn’t have worked so hard all along if you had known what might have been….A 14 year journey… you have fought and endured. so glad you are now at this place. You have come so far. So proud of you!

  • Sherri

    Such a good point is right! Sometimes ignorance is bliss and too knowledge can lead to anticpating things that may never occur…know ledge is empowering but it can also take away hope…it’s a delicate balance…like most of life. It’s been a long, awful road…but we are all still standing, tight as ever and you my GF never cease to amaze…<3!

  • Kate

    I don’t know what you say to newly diagnosed patients either. On one hand, there really are patients who keep their disease mostly under control with Asacol and go their whole lives without the disease having a severe impact on their life. And then on the other end of the spectrum… well, you know what the other end of the spectrum is like.

    I had a huge internal struggle when I was first diagnosed over how upset I should feel over the diagnosis. It wasn’t a horrible terminal diagnosis, but it wasn’t a little case of asthma either, KWIM? I didn’t want to whine and complain or ask for help more than my disease warranted, but I truly did not know how sick I was or wasn’t so I just didn’t cut myself any slack or ask for help at all. I had pancolitis with ileitis when I was diagnosed, but my doctors were pretty matter-of-fact about it and encouraged me and said I’d “feel better soon”. All I knew of IBD was that I had an aunt who’d had one surgery for Crohn’s but had been basically fine for 10 years. Everyone I knew seemed to know someone with IBD who just popped a few pills and was “fine” (or so they believed). I felt miserable and I was so scared about what the future would bring, but since it’s an invisible disease and I didn’t “look sick”, and felt like my case must really be “no big deal” since no one freaked out, I didn’t want to talk about it or let my emotions out at all, because I didn’t want to be the girl who made a big deal out of nothing. At the same time, a classmate of mine had a terminal cancer diagnosis and passed away a couple months later, so then I really felt like I wasn’t allowed to feel sorry for myself or cut myself any slack.

    So I wish when I was diagnosed, someone would have told me this really was a big deal and it was OK to be scared and talk about it and to ask for help. That it was OK to worry about the possible terrible outcomes, but not to let it consume me.

    But it’s so hard because everyone’s journey is so different… so who knows. But I really love reading your blog! I read a lot even if I don’t comment.

    • http://risaroo86.wordpress.com Marisa Lauren

      It’s really such a balance and one that I haven’t figured out how to master yet. Thanks so mud for the sweet comments about my blog :)

  • http://gravatar.com/casmith24 IBDMOM

    Marisa, I’m the mother of a young person who was diagnosed with “indeterminate colitis”, that is, they don’t know whether it’s Crohn’s or UC, at roughly the same age you were. My child has been living with it for 6 years now. I’m also a professor whose research area is consumer health information technologies (the research field preceded my kid’s diagnosis…) so I found your post interesting for both personal and professional reasons!

    I find that the hardest thing for the general public to understand about autoimmune diseases in general is the variability. My father lived most of his adult life with a different autoimmune condition (genetically connected to IBD, apparently, but not IBD); he was one of the handful of patients who are impacted quite severely by it, when most aren’t. I see the same problem with IBD patients — I agree with Kate that *everybody* knows somebody who just pops a few pills a day and they’re fine. My own son was in that category himself, except it was 30 pills, for the first 6 months, and then things got really bad very quickly. Is it any wonder people have trouble understanding these diagnoses?

    We do patients a disservice, just as we do any group of people a disservice, if we assume a monolithic response. Patients show variability too. Not everybody wants a support group, and not everybody wants a lot of information given to them. The irony and the dilemma, of course, is that with a serious and variable diagnosis like IBD, when you DO need information it might be sudden and urgent, and you might not be healthy enough to take it in. It seems to me that it is important to provide patients with information *about* information: “It’s there if/when you need it.”

    However, the incredible misunderstandings that many, many people have about autoimmune diseases have made me passionate about educating beyond the patient. Family members, friends, the general public need to be better informed in order that patients can be better supported.

    • http://risaroo86.wordpress.com Marisa Lauren

      I completely agree and understand where you are coming from. Awareness (real awareness that shows the reality) is so desperately needed. Would help pts in school, work, etc as you know. I’m so sorry your daughter is going through so much. And I know you must be feeling a lot as well. Thinking about you both.