Just blowing steam

I was doing my research rounds the other day, where I check out other blogs related to IBD, check out articles, that sort of thing and I came across a line that upset me a little bit.

The article was talking about research into the genetics of IBD and early detection, and in the piece it explained the difference between Crohns and Colitis, and the line that really caught my eye was this

“Although Crohns is incurable, surgery to remove an ulcerative colitis patient’s colon cures that disorder”

Now. Technically that is completely true. Colitis doesn’t effect anywhere else but the colon, so you take it out and you don’t have UC any more.

I “technically” don’t have colitis because I don’t have a colon.

But.

There’s always a but isn’t there. Man that big ol’ but just hanging around. God, you’re annoying Mr but.

I still bleed. I go to the bathroom 8+ a day, almost always wake up once in the night, I still occasionally have urgency and my stools are watery and never formed.

People without IBD are reading that that last paragraph like “Eurgh, too much info bro” people with IBD are nodding in understanding.

I’m not in the insane amount of pain that I was once in, I’m not on steroids but I do have the exact same symptoms that I had when I had UC just on a smaller scale.

I would not say that I was cured.

That line really effected me because it makes it seem that that if you have Colitis, its not that bad because we can just whip out your colon and you’ll be a-okay.

I know that some smartie pants reading this will say that its a different medical problem because it is now my Jpouch that is inflamed and so I have pouchitis.

Yes. This is very true but I am confused, for you see if Ulcerative Colitis is only in the colon, and my Jpouch is made up of my small intestine, why do I have the same symptoms? Why do I have inflammation of my pouch? What’s causing it if technically the colitis has been taken away?

I’m not upset at the article because they have given out false information because what was said is technically true.

I’m just upset because there are plenty of people out there, like myself who have/had UC, have had surgeries and are still in the same position as before.

We’re not cured, and it bloody sucks!

Deep down, I am frustrated that no one yet has been able to tell me why things aren’t quite working with my pouch and though I keep up a positive attitude, it does get to me.

Gah. I am just having a massive rant. Does anyone else feel like this sometimes? Or am I just being over sensitive?

2 Comments

  1. jo   •  

    Hi Stephanie, Just found your blog through the UK Crohns and Colits web. I know EXACTLY what you are saying in this post as someone who i work with has litterally just told me that their friend who has the same condition as me (I have crohns disease) has been told that they can be cured. WTF first i have ever heard about this. It gets me so cross when people say these kind of things. So the years of being so sick i could hardly do anything, being pumped full of medication etc etc is made (in my opinion) trivial in a single sentence because of one un educated person. ahhhhhhhhhh. Im so mad i cant even put the extent of my anger into words. Anyway on a lighter note i would like to say congratulations on your blogging. Lovely to read and its comforting to know that we are not alone in dealing with this x

    • Stephanie White   •  

      It’s so annoying isn’t it? My great nan had Crohn’s disease and she had to have part of her stomach taken out and then she never had a flare again. That doesn’t mean she was cured, it just meant that she managed to stay in remission.
      Just have to keep putting the awareness out there, and hope that people take notice so the word “cured” can stop being flung about!
      Thanks for the kind comments and taking the time out to message me, I really appreciate it 🙂

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