I refuse to let my stoma rule my life...
Hi, I’m Michelle and I want to share my journey of becoming an ostomate approximately three and a half years ago.
It started with being on some pretty heavy doses of prescribed medication for an unrelated condition, with one of the side effects being chronic constipation. I thought I could manage this side effect myself, with the use of laxatives, and I didn’t realise it was a serious problem that could potentially have serious consequences.
The turning point came when I collapsed in the bathroom one night. My daughter heard the bang of me hitting the floor when I passed out. An ambulance was called and I was taken to Box Hill Hospital for investigation and treatment.
Upon various tests being conducted it was found my bowel had become completely blocked and was irreparably damaged. A decision was made to remove most of my large bowel in an emergency colectomy and perform an ileostomy urgently. There was no time to spend in placing the stoma in a suitable site, the colorectal surgeon and team performed the procedure during the early hours of the morning.
I was in ICU for three days while I was recovering from the operation. When I recovered enough from the surgery to effectively communicate, I was told I now had a stoma and ileostomy. I didn’t know what a stoma or ileostomy was. I had never heard of either thing. The STN explained to me and my family about having an ileostomy and stoma, the impact it would have on my life and how to manage it. I was, and am, very lucky to have the support of my family.
Upon my discharge from the hospital I spent each day continuing to learn bit by bit about this massive change to my life. A nurse from Bolton Clarke visited daily to change the dressing and guide me through changing the bag. We tried different bags from different companies to find which one would suit me best. Eventually I got the hang of changing the bag myself and I no longer needed assistance.
About 6 months into having my stoma I developed what appeared to be an allergic reaction to the bag I was using. The skin around my stoma became very inflamed even to the point of bleeding. I had many blow outs and leaking. This was a real shame because I had been happy with the setup I was using and was scared to try anything different.
Unfortunately my STN at the hospital was difficult to pin down and I needed help quickly. It was time to call the STN at Bolton Clarke again. We tried different products that were supposed to be skin friendly and eventually tried a product infused with Manuka honey. My skin virtually cleared up overnight and there were no more issues with leakages. I was very happy with the results and used this bag for a couple of years.
During the course of having my ileostomy I developed adhesions from the original surgery. This has resulted in about six partial bowel blockages. These have proved to be one of the most painful experiences I have ever been through. They have resulted in a five day admission into hospital each time with a nasal gastric tube (NGT) inserted. Not one of the most pleasant experiences I must admit but it worked. Fortunately each blockage hasn’t necessitated surgery to clear it.
Over time and with the reduction of intake of fibre in my diet, the blockages have ceased (fingers crossed).
I recently had my first holiday travelling on a plane since my stoma. I was very scared about going through security and flying on a plane. I had read of stories through a Facebook support group about various problems others encountered when travelling. I decided before leaving to have several practice run throughs of going through airport security. I was stopped each time going through security and I was asked about the object on my abdomen. I explained about my ostomy which they wanted to search and they asked to lift my shirt to examine. I requested that the search take place in a private room, which they took me to and I lifted my shirt. They took a swab of the material of the ostomy bag, tested it - which was all okay - and let me through. The first time was particularly scary but I had another try at the airport on a different day and was much less nervous.
When I did actually fly I had a fairly light meal the night before and I had nothing to eat on the day. I just had minimal fluids to reduce the need of bathroom pit stops. The output when I did have to go was greatly reduced.
I am now successfully managing my ileostomy. I still occasionally have the odd hiccup but I work on the premise of “be prepared”.
I refuse to let my stoma rule my life and I am back doing the things I love, like trail walking, personal training and swimming.
This article was forwarded to Y.O.U. Inc by one of its members (July 2023).