“You might need a stoma” then “Sorry…” – Crohns Blog – Learning to live with a stoma

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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.

To celebrate the forthcoming launch of Book forCrohns, we’ve launched Blog forCrohns, featuring blogs from some of the best Crohn’s bloggers on the web as well as volunteers from the forCrohns committee. We’d love you to contribute, find out more here.

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