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I’d prefer reality to “sugar coating”

When I was diagnosed with Ulcerative Colitis, I had never heard of it. I had never even heard of Inflammatory Bowel Disease. I had heard of Crohn’s Disease, and I knew it was a disease which included just two symptoms; abdominal pain and diarrhea.

I was diagnosed very quickly, after just 2 weeks of being incredibly unwell and deciding a trip to the hospital was necessary. I was diagnosed on the day I was admitted and was relieved to have a name for what had caused so much agony in the weeks before.

Unsure of the future with ulcerative colitis

At that point, I obviously didn’t have the faintest idea what impact Ulcerative Colitis would actually have on my life going forward.

I was given an information booklet which told me that with the right medication, and possibly a few dietary changes, I could lead an ordinary life. This was great news! I was sick, but I would be better soon, and I would have a hospital admission story to tell! Up until that point, I’d never been admitted for anything, and I’d never had more than a cold.

So, imagine my surprise when a few days later, the treatment wasn’t doing what it was supposed to do! I was pretty annoyed because I had assumed I would be “over it” by now. A week after being admitted, I was being marked up for surgery to have a stoma. I knew I would be wearing a bag, but the stoma nurse didn’t show me one. I was literally imagining the kind of plastic bag one takes their grocery shopping home in from the supermarket! You would probably expect me to be worried at that point, but to be honest, I was so weak and tired and fed up of being in the hospital, that I just wanted it done so that I could feel better. The stoma nurse had assured me that removing my colon would cure me of Ulcerative Colitis and that the stoma could be reversed.

I wasn’t prepared for anything that happened after diagnosis

Now, I do understand that hitting a newly diagnosed patient with worse case scenarios is not ideal, but I do appreciate some reality. It was an incredibly tough time for me mentally because I wasn’t prepared for any of it. If I had known that I had just been diagnosed with a chronic illness, which would affect much more than just my intestine for the rest of my life, and that surgery was often needed, I think it would have helped me deal with it.

Difficulties with an ostomy

Me and my first stoma did not get along well. Constant leaks and burnt skin and having no-one to talk to that understood resulted in me becoming incredibly isolated. The first question I asked the surgeon during my follow up was “When can I have this reversed”. It was only then that I was told that it wasn’t just a simple procedure; and that a J-pouch would need to be surgically created using my own small intestine, to serve as my new rectum for storing feces! The surgeon then moved onto how the surgery may affect my fertility, and recommended I start a family first if that was in my “life plan”.

I left that appointment very angry. Again, I hadn’t been fully informed in the first place, and I was very upset. At 19, being really unhappy with my current life with an ostomy and being faced with infertility if I had a J-pouch was hard to process.

Ultimately, I made the decision to go ahead with the surgery. A life in which I refused to leave the house didn’t really feel like any kind of life at all.

Mental health and quality of life after surgery

On the day of the surgery, an anesthetist came to see me, and she queried why I was having the surgery. She couldn’t hide the look of disfavor on her face, and made the comment “So, purely for aesthetic reasons then”. I was gobsmacked. She had made me feel like I was wasting their time when the reality was that my mental health was in the toilet, and I had no quality of life.

Basically, I thought f**k her. It was a hard enough day already. Rather than being concerned about the surgery itself, my only thought when being wheeled down the corridor to the operating theatre was “Now I might never children.”

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • crystal.harper moderator
    4 weeks ago

    Oh my…. I’m angry for you that you had to deal with all of that. It’s a shame that you weren’t given all the facts up front and I’m just appalled at the anesthetist’s comment to you, especially at only 19 years old! It’s for reasons like this that I love this online community where people can read stories from others who have actually gone through it all first hand. Thank you for sharing your story with us!

  • thedancingcrohnie moderator
    4 weeks ago

    I am so sorry you had to go through all of that! I can’t imagine and the fact that you weren’t fully informed would drive me mad. I agree ten-fold: tell me straight up vs. sugar coat things.

    I hope you are doing well these days and finding relief from symptoms. Rooting for you.

    Always dancing,
    Elizabeth (team member)

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