29th April. Today. It’s the day I’ve been waiting for throughout the past few months; an appointment with a specialist colorectal surgeon who has a lot of experience with EDS patients.
The degree to which my EDS impacts my bowel has been getting increasingly worse. I’m fortunate that my Crohn’s has stabilised on Humira injections as the EDS has led to numerous laxatives being required, in addition to irrigation, enemas and frequent colonoscopy bowel prep. My most recent hospital admission was due to my bowel being on the verge of perforation, and it was evident that the regime of medications I was on were no longer working, and something needed to be done. I was fortunate that on that occasion the bowel prep finally had some effect and I avoided emergency surgery, although I didn’t think it’d be long until surgical interventions were needed.
I went to the Royal London Hospital today with my parents who have been there for me through everything life has thrown at me. The surgeon was very understanding of my position, but told me what I was hoping not to hear. I had exhausted every medication regime, irrigation pattern, enema frequency, and he advised me that the best way forward would be to have surgery to form an ileostomy.
Ileostomy. Stoma. Bag. I had been expecting this news, although I couldn’t accept it myself; as I write this post my vision is blurred by tears. Now I’m home, I still don’t think it has quite sunk in. I’m 20 years old, and I’m going to have a major operation to change how my body looks, to make me slightly different to healthy people and make some changes in my life. I’m holding on to the hope that in addition to the physical changes, it’ll also improve my quality of life as the truth is I just can’t carry on with how things are at the moment. In theory I have made the decision to have the operation, but quite honestly there wasn’t a choice.
It’s going to take a while to sink in, and I just hope I can get my head around things; I have a bit of time as the waiting list is months long as I want the particular surgeon to operate due to the complications my EDS brings. I’ve been told that the stoma may hernia which is common in EDS patients, but that can be dealt with if they arise with revisional surgeries. I’ve also been told that, as my bowel isn’t going to be taken out initially, I may still need my Crohn’s medication although as my colon isn’t being used, the problems may just ‘fade away’ which is the topic of a really interesting area of research at the moment. As my colon will still be there, it’ll still produce gas and mucus and if this becomes troublesome the surgeon will operate again to remove my bowel and potentially form a different kind of stoma.
Writing my blog posts help, but it all still doesn’t feel real. I really hope that things will get easier with time and next time I write a post I’m in a better position with things. I really am so fortunate for everyone who has text or been there today; I really wouldn’t cope without you all.