Musings

Upon changing my bag this morning I noticed the skin around the stoma was a little irritated. The irritation was around the circumference of the stoma and being new to the whole stoma game I’m wondering if it’s an irritation caused by the adhesive on the bag.

Today is release day for me and after 12 days in hospital (11 if excluding the night before) I thought I would reflect on what I was told would happen and what actually happened. As day-to-day care from nursing staff in hospitals can vary widely, I will keep it just to the surgery, how long I was in hospital for and aftercare from doctors, stoma nurses and physio.

My journey towards a colostomy started back in September 2018 and at the time I thought I’d be on my way to recovery but things rarely run smoothly in the medical world. Here’s my timeline from electing to have the surgery to my current surgery date.

At some point up to 75% of Crohn’s sufferers will have surgery of some form either by electing to have the procedure or having it due to complications.

Surgery will remove infected parts of the intestine but will not cure the disease but for many people it will improve their quality of life and allow them to return to normal activities.

IBD is a disease that you never wanted and wished every day you never had and having surgery to change the way your body functions, particularly if you elect to have it, is a big decision. But, at some point you feel enough is enough and it’s time to start pooping a different way.

When you have been living with a chronic disease for such a long time, it’s hard to recall what life was like before but you never forget the day you are diagnosed with one.

The Day You Discover You’ve Got a Disease for Life

It was 2002 and was in my early 20s and I started my journey to IBD with frequent visits to the toilet and the usual things that end up in the toilet. Faced with a potentially lengthy time waiting to see a gastroenterologist, I opted to go private for the initial diagnosis.

The specialist I saw (I still see the same doctor to this day under the NHS!) performed a flexible Sigmoidoscopy and was quickly able to diagnose IBD. I can vividly remember the diagnosis and he was very upfront about the fact that I had an incurable disease and would be on medication for the rest of my life. From then onwards, things would be different.

I left accepting what I had been told but I there was a lot to process. IBD comes with many symptoms and at some point and I would get to experience many of them at some point in the future and probably at the same time. I would become a regular at the hospital. I would have to numerous and regular blood tests, MRI and CT scans, colonoscopies, Sigmoidoscopies, bone density scans. I would have to work my through medications that go in both ends to work out which worked best for me. I would have to get to experience abscesses, fistulas, mouth ulcers, pain, discomfort and the toilet would become my second home. On some occasions I’d never make it to my second home in time.

I cried!