Before stoma surgery
Many years before my stoma surgery I had a bad flare up of ulcerative colitis, but because it was left sided colitis ,surgery was discouraged. The flare lingered for a year and I was admitted to hospital a few times during that year. Surgery was mentioned and I met a surgeon just to discuss the possibility of surgery if other medications were not successful. I was also shown a video with people and their stomas, which was very old fashioned and off putting, no one was with me so if I did have questions, I couldn’t ask them. As it happens, things improved eventually and I got on with life. So I was aware of the surgery but I was in my early twenties so fast forward to two years ago and I had forgotten a lot of the information (and maybe blanked it from my memory).
So when I started to flare at the end of 2015 and things didn’t improve with medications, I realised that the possibility of surgery was very real. Again it was left sided colitis but also very severe, but I was again discouraged from surgery. It was mentioned that if I did need it, then surgery could be a temporary ileostomy to rest the bowel and worst case was a permanent ileostomy as my rectum was very diseased.
I struggled on for months trying various things that didn’t help. I became very unwell but I felt no one was really listening. Eventually I started getting temperature spikes and my bloods were not very good but was still at home struggling on. I then became unable to pass urine properly if at all so my husband took me to A&E where they kept me in. A surgeon came to see me on the Saturday and said that I was very poorly and would need emergency surgery within 48 hrs, he would have a look at a CT scan to decide.
A stoma nurse was soon at my side with leaflets and a marker pen to mark where my stoma would be. That was so scary as I didn’t have long to come to terms with it all. Maybe that was for the best as I would have thought too much about it. The next morning (Sunday) I was taken down to theatre. It was the most frightening thing I have ever had to do. I knew I needed the surgery but I didn’t really know much about the whole thing. He did say I would need open surgery so no keyhole for me, and there wasn’t really time to clean the bowel out.
I remember looking through the leaflets before I went down to theatre and couldn’t really envisage my own body with a stoma. I am lucky in that I got the chance to meet my stoma nurse just before and to have some idea of what was going to happen, some people wake up with a stoma with no idea that they were getting one.
I woke up and because I was quite unwell I didn’t really look after my stoma myself for quite a few weeks, so didn’t really see it either, I was a bit scared to look too. The thought of my bowel coming out of my tummy was terrifying.
When I eventually changed my bag with the help of the stoma nurse, I was scared to touch it in case I damaged anything and it took a good few goes to get used to it. I think for me, the strange thing was having the last bit of rectum removed, that is when I knew there was no going back, and it was hard to come to terms with. You feel different and wonder if people see you differently.
Now I am glad I had surgery and although my body is different, I have come to terms with it.
You can also follow Clare on her blog.
Let's try this again. I read your story and it sounds like you had to deal with a lot. Most stories I have read are about people, like you, with colitis so I can't relate because my colostomy was the result of very severe diverticulitis and infection but the end result was the same. I can relate to the rest of your story though. I am very obsessed with my hygiene so I was really worried about any odor. I also could not look at my stoma or touch it. I've read where other people name their stoma but I haven't done that.
Hi Terry, my sister just had a colonoscopy and they found pan-diverticulitis and a small patch of crohns. What did they try and treat the diverticulitis with?before surgery I mean . Thanks