When I was around 14 years old I got two bad stomach cramps which lasted for a few hours each. As a result, I went to the emergency room but the cramps cleared on its own and with the vague nature of my symptoms, the medical team didn’t investigate it at the time.
Fast forward a couple of years and I started noticing blood in my poop and some urgency in getting to a toilet. This is when I got my Crohn's disease diagnosis. I was put on Mesalazine at the time but unfortunately for me, it didn't really work for me. I received various liquids and foams (steroids) to locally treat my poorly inflamed bowel but it wasn't really working either. I was also losing weight at this stage which can be common when your disease isn't under control. I was also put on Azathioprine briefly but blood tests showed I was intolerant to it. This is around 1999 or so, so there aren't as many options as there are today. Remicade (Infliximab) was being trailed at the time but I was simply too unwell and my bowel was in such bad shape that it was too late to try in my case.
I had a conversation with my medical team, who told me that we're at the end of the line when it comes to treating it with medications and surgery is the only remaining option. From then I had surgery to get an ileostomy which means my poop goes into a stoma bag on my tummy. I was resentful of having to do this at the time. It's tough to have such a big change to your body when you're 16 or 17. Recovery took some time (probably because of the long vertical cut on my tummy) but it was not insurmountable. I have to say, although it was a difficult time, all the hospital personnel were really nice.
I don't really recall too much pain from the surgery other than getting out of bed was difficult until the physio showed me a trick for doing it. I do remember a few mishaps with my stoma bag later on, one when playing Rugby in PE and I ended up landing on my bag which believe it or not more or less exploded. Embarrassing at the time but funny now.
With time I started to realise my stoma is actually a good thing. I'm feeling a lot better, I have no urgency when going to the toilet and all my big issues start to become small issues. My body (albeit with additional stuff) is my own again. I was even practicing martial arts for a while which in retrospect doesn't seem like the best but went perfectly fine at the time.
A good thing, which does come with setbacks as we all know. I had the bad luck of getting an Ileus about a year after my colectomy, basically, a bowel obstruction that doesn't resolve itself. So unfortunately I had surgery number 2 to resolve that. Along with the nose tube which is oh-so-fun :) It was a pretty rough period but the surgery went well. After that, I went on a strict diet for a while until I was sick and tired of it, to be frank. Turns out I do pretty alright with food these days and I can more or less eat anything even though some foods aren't my friends such as coconut, too many oranges, etc.
I have had the odd bowel obstruction but I've never required surgery for it after that first time (knock on wood). Fast forward more or less 20 years and I realise I've lived quite a nice life. Lots of food, lots of travel, lots of hiking, moving here to Ireland (originally born in Sweden), lots of fun jobs, and a very nice and supportive partner. I honestly couldn't really find any way this has set me back in any meaningful way.
But in September 2023, it is time for surgery number 3. It's different this time though, it's elective and I'm not (as) scared. My consultant has said that if you leave (as they did with me) a rectal stump in for that long there is an increased risk of developing colorectal cancer. So they recommend I have a proctectomy which is popularly known as Barbie/ken butt surgery. They remove the last bit of my bowel and my butt hole and sew me up (hence the doll reference). To be honest, I'm fairly tired of being poked and prodded there anyway, and with inflammation and strictures (narrowing), the scopes hurt a lot more so it didn't take too much convincing.
I had this surgery a bit more than a month ago and they tell me it went well but recovery takes a bit of time and it's been a bit up and down. It's a tricky wound to heal and it's been a learning process how to dress it (for my partner, dressing your own wound there is difficult). The pain has not been as intense as I thought it would be but I have learned that I'm apparently allergic to the dressings from my home country. I think that's it, currently off work and looking forward to getting back to normal life soon. All in all, in good spirits and feeling like I'm mostly back to normal energy-wise.
My main goal in writing this is to simply show that with Crohn's sometimes there are setbacks (whether it's surgery, symptoms, or otherwise) but that they don't have to define you as a person and despite getting this diagnosis feels awful (at least it did to me), life moves on and you move on.
Apologies for the essay. If you've read this far, thank you.