“You might need a stoma” then “Sorry…” – Crohns Blog – Learning to live with a stoma
3rd March 2015
The CT scan showed that my Crohn’s had reached the point where surgery was inevitable. I sat down with the surgeon to discuss the operation and that’s when he said “You might need a stoma. We won’t know until we operate”. I didn’t take in the full implications of his statement. Bags and stomas were not something that got much discussion in “polite society”. I was given a booklet to bring me up to speed.
I met with the stoma nurse, Fiona, the Friday before surgery and realised maybe there was more chance of this happening than I first thought. I asked a lot of questions and went away with a large, black cross on my abdomen for the surgeon to aim at. The following Monday I was lying in Recovery. The surgeon approached. His first word was “Sorry…”, I knew what was coming. He lifted the blanket so I could see the pouch. Knowing it was a possibility had given me a chance to prepare for that moment.
On Wednesday Fiona showed me how to empty and change a pouch. It was my first chance to see and touch the stoma out in the open. I’d seen pictures but here was my own living, moving, little companion. Darker than I expected and it suddenly hit me here was my intestine sticking out through my body with a bag over the end. I had imagined that the gut would be rich in nerve endings which would object to being “outside”. Not a bit of it. It was completely dead to the touch. Fiona handed over the “stoma survival kit” containing all the things I needed and recommended fitting a new pouch every 2 days. That gave me until Friday before it was my turn. I was filled with some trepidation but there was so much else to think about. She told me that at 54 years old I was one of her older patients, most were in their 20s and 30s.
Friday arrived. I realised what I was afraid of. It was the thought of the stoma coming to life, just as the pouch was removed. Mid-morning Fiona appeared, pulled the curtains around the bed and we started. She took me through each of the steps. I gingerly removed the old pouch and put it in a disposal bag. I wiped around the area with the adhesive removal wipe and peeled the protection sheet off of the backplate. I was just about to position it when the stoma “performed”. It wasn’t that bad or embarrassing. After a quick wipe round I was ready again. Making sure it was hanging vertically I gently pressed the pouch into position. Job done. Much easier than I expected. Next challenge – doing it solo.
By the end of two weeks in hospital I was confident at pouch changing and no longer phased if the stoma “woke up”. The secret to stress-free changing was to follow a set sequence each time and have everything prepared and laid out before you started.
You get to know the best time to “input” to get “output”, rather like house training a puppy. There was a “quiet” period after getting up each morning which proved to be the most convenient time for pouch changes. Once I had returned to work I would lunch at noon so the stoma would return to a “resting” state before the train journey home. Stomas can make strange noises which go unnoticed on the Tube but on a quiet commuter train it’s a different story.
To prevent squashing the pouch I took to sleeping on my back. The disadvantage was that this made the stoma a high point. Any “gas” present in the gut quickly made its way into the pouch and inflated it like a balloon. It’s a tribute to modern adhesives that the bag stayed put even though it was under extreme pressure. I was half expecting it to detach and fly off around the room with hilarious consequences.
I won’t pretend it was all plain sailing. There were a couple of problems – an abscess and a prolapse. Both were quickly sorted out by my local stoma nurse. If I had any doubts I gave her or Fiona a ring as they had seen it all before and knew the solutions. The abscess was tackled with a short course of antibiotics. For the prolapse I wore an elasticated support belt around my midriff. This had the added bonus of addressing probably the biggest fear of pouch wearers – leaks. The few I suffered from were always down to the pouch partially losing adhesion. The belt kept the pouch in contact with the skin all the time and I became 100% confident being out and about.
Thanks to Nigel for this blog. Nigel blogs regularly at www.crohnoid.com on his Crohn’s Journey and Patient Empowerment, and is also on Twitter @crohnoid. Nigel has had Crohn’s for over 35 years his blog “Highlights” include getting prepared for an operation; ileostomy; living with a stoma; stoma reversal; emergencies; surviving in hospital; coping with consultants; medical records; liver and bone marrow biopsies; what to expect as an NHS outpatient…and some unexpected side effects.
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