My Scars Tell My Story
I was reading the article "Crohn's Disease Surgery Scars" on this site recently, and have great respect for Matt's honesty about his feelings about his scars.
I can relate. My personal journey of accepting my body through all of the changes brought about by ulcerative colitis – surgery, weight changes, and scars – is constantly a work in progress. It all happened so quickly in the beginning. Initial symptoms, diagnosis, and then surgery all occurred within 3 weeks. The huge midline incision (just over 7 inches) looked to take up all of my tiny torso. I also had an ileostomy and a drain hole. I was completely overwhelmed when I looked at myself. I felt like Frankenstein's monster!
Anyway, I read a comment on the article from someone who said that they feel disgusted when they look at their scars. That they serve as a hideous reminder of IBD and its equally awful result, an ileostomy.
I immediately felt great sadness. For them, and for myself.
My first surgery with ulcerative colitis
It reminded me of how I felt when I had my first stoma. To say it was a shock would be a massive understatement. I couldn't look at it without feeling sick. Those early days, when the black stitches still held it in place, I actually thought I was going to faint when looking at it on more than one occasion! I hated myself with it. I was always worried that someone might see my bag through my clothes. I also had a really rough time with leaks and burnt skin, to the point where I didn't even want to leave the house anymore.
I couldn't wait to be rid of it, so I chose to have a J-pouch. I lived with that stoma for a total of 2 years before being connected up. They were the longest 2 years of my life! I felt ashamed – like I had a dirty secret.
When the stoma was gone, I was dealing with the scars: midline incision, drain, and ileostomy. They reminded me of those dreadful 2 years. I hated them. So much so, that I had my stoma scar tattooed over. I wanted to forget the period in which I felt nothing but embarrassment, weakness, and shame.
Wanting to cover my surgery scars
I had to have a stoma again in 2014 – the result of a complicated resection for an abscess and twisted intestine. This stoma was placed on the other side, so as not to wreck my tattoo. By this time, I had found the online community of people with IBD. Many of them lived happily with a stoma. I couldn't help but remember my first experience, and how horrible it had been, but, the positivity of others and the reports of people getting their lives back made me think that MAYBE, I could do that too.
I only had that stoma for 5 months, but it was a completely different experience. I learned so much from the IBD community about products, clothing, and day-to-day life. I was so happy and grateful to be pain-free! I even debated not having it reversed again!
Proud of my strength – and my scars
I did ultimately decide to give the J-pouch another go, but, I felt differently about my UC scars. Now, I had a stoma and drain hole scar on the opposite side to before. I was proud of them. They were proof that I'd survived something that had tried to beat me. They were proof that I am stronger than I ever thought I could be.
In 2018, I had a J-pouch excision and permanent ileostomy. I am incredibly grateful for it, but I will never forget that first experience. That hatred, and that fear. I will also never forget how the community that truly understood my situation helped me.
Now, whenever I have the opportunity to do that for someone else, I'm honoured to.
Will you take our In America survey to help others understand the true impact of Crohn's and UC?