Crohn’s Disease Lives with Me: How my Ileostomy Allowed Me to Control my Illness

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By Jo Hunt

For as long as I remember, Crohn’s disease has lived with me. Long before my stoma, I remember being poked and prodded by doctors and nurses who couldn’t work out what was wrong with me. In 1969, when I was just a child, I spent two weeks in hospital isolation. My parents were allowed to visit but had to wear gowns and masks, and my brother could only wave through the window. The whole experience was very upsetting.

I remember the pain I felt and the sickness. The doctors suspected I might be lactose intolerant, so I had to drink Galactomin rather than milk. I remember the disgusting taste and how I cried to my mum. I hated hospital, and to this day I will only go to one if it’s urgent.

I missed a lot of school because of my illness, and when I was able to attend I was bullied. I spent a lot of time on my own, and as I got older, it got worse. At 15, I started to get arthritis and had to use a wheelchair for a while. I was given steroid treatment, which controlled the arthritis but made me gain weight. This really affected my confidence, to the extent that I hated looking in the mirror. The following year, I started to lose weight uncontrollably. I became so thin that I always felt cold and had to wear a jumper and scarf all the time.

During my teenage years, I also had to deal with erythema nodosum, which is associated with Crohn’s disease. It causes fluid lumps to develop, which affected my arms and legs. It was so painful that even getting dressed was a challenge. At 17, every time I ate I would have to run to the toilet. I could never finish a meal before it went cold. No medicines seemed to help, and the pain and malnourishment were becoming unbearable. Leaving the house felt like a military operation. Most people plan their trip based on the shops they want to visit. I had to plan a route based on how far it was between each toilet. When I did venture out on a rare shopping trip, I had to take toilet roll, wipes, spare clothes and painkillers. I was told that my operation couldn’t be delayed any longer and to prepare for surgery. At 18, I had my colon removed.

For a while, I was fine, but five years later, the Crohn’s returned. It started with an abscess on my buttock. Even after being drained three times, it kept filling up, so the doctors investigated. They found that my bowels were so ulcerated and thin that they had split, and an ileostomy was the best solution. I was offered a temporary stoma to give my bowel the chance to rest and recover but after years of pain, I chose to have a permanent ileostomy.

Life with a Stoma

Crohn’s still lives with me, but now, it lives on my terms. If I eat too much of the wrong foods I can get pain, but otherwise, I am relatively pain free. I enjoy food now and I love my freedom. For so long, hospital appointments ruled my life and I couldn’t go anywhere without being prepared for an accident. When I leave the house now, all I have to remember is my phone and keys. I still keep toilet roll in the car, but that’s more for my grandchildren than me! Sometimes things still take a little bit of consideration, but nothing is out of reach anymore. I can go out for a meal, I can go swimming, I can drive for miles, and all with barely a thought about Crohn’s Disease.

I have had to make small adjustments to suit my life with a stoma, but it’s just the same as wearing glasses. Sometimes, I forget my specs, but over time, I will adapt my habits so that they fit into my life. I’m lucky to be surrounded by supportive people. They help me through my tricky days, when I’m exhausted and need my B12 injection, or when my arthritis is especially painful. For those who are just starting their journeys or are struggling with their diagnosis, resources like me+ are invaluable. The support, advice and information they provide really help people, and I wish something like this had been available to me when I was younger. I am sure that it would have made my journey easier, and that’s why I want to share it. When others are struggling, I want them to realise that there is always a friendly ear willing to listen. Even when there are dark days, sunny days follow.

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