My Journey With Crohn's Disease - Part 1

My Diagnosis And A Very Tough 2 Weeks

I was diagnosed with severe Crohn’s disease around 11th May 2020. Although i’d been expecting the diagnosis after suffering 5 years of perianal abscesses which then developed into pretty complex fistulas, hearing the actual words from the consultants mouth over the phone made the whole situation real, but at this point I had absolutely no idea just how real things were going to get, very quickly. The plan was for me to have a consultation at St Marks Hospital to discuss what medication I would be looking at taking to try and control the disease. Until that point, I would just carry on with life as normally as possible during the Covid 19 restrictions that were in place.

I had been experiencing small stomach pains for maybe a couple of weeks and some fatigue. Then, on Wednesday 10th June 2020, I suddenly began to have quite intense stomach cramps. Thinking it was just going to be a flare up, i decided to go to bed and try to just get through the pain and hopefully the next day I’d be ok. That evening was horrendous!! The pain at times around my stomach and back was ridiculous. I couldn’t get into a comfortable position all night and I began to develop a fever, one minute i was freezing cold, the next sweating like a pig. I continued to try and just work through it for a couple of days with my wife constantly checking my temperature, heart rate and the levels of oxygen in my blood. All were slightly off and weren’t improving at all. After talking to my consultant, which was conveniently a scheduled call to discuss how things were going, the decision was made to head to A&E. Via Maidstone Hospital, I ended up at Pembury Hospital on the evening of Friday 12th June. I had never been through any of my hospital visits prior to this without having my wife by my side, but due to the Corona Virus I wasn’t allowed anyone else into the hospital with me.

After a long wait in the hospital reception, i was finally seen by a doctor who explained that as well as the Crohn’s, I had developed a blood infection (Sepsis) and would need to be admitted to the hospital. At this point I hadn’t eaten properly for around 48 hours, barely slept and my wife had been waiting for news in the car. And so I was taken to a ward and put on strong painkillers and antibiotics via intravenous infusion (IV).

The following morning i was feeling a little better. I had a small breakfast and was feeling optimistic that my stay would not be for too long. The blood infection was beginning to be controlled. As the morning and afternoon progressed, i began to feel very bloated, as if everything i had eaten and drank was just sitting in my stomach and going nowhere. At this point I hadn’t had a real bowel movement for a couple of days and i’d started to feel very uncomfortable again. It was at this point it was decided i needed a nasal gastric tube (a tube going from my nose and into my stomach which, in my case, is attached to a bag, and drained any fluid etc from your stomach). For me, the process of having the tube inserted was easily one of the worse things i have ever experienced. As soon as it hit a certain part of my throat, i immediately vomited a green liquid everywhere, and then once that ceased, i still had to have the tube put in. “Swallow” the nurses kept saying. I swallowed and swallowed until eventually the tube was in. Thank God that was done!

That evening I had a CT scan which showed a severe flare up and discovered my bowels had constricted and i had a 20cm blockage, in which a small abscess had developed in the middle. The immediate plan to try and calm this down was for me to start drinking a meal replacement shake to not only try to get something slowly passing through my bowels but to also get some nutrition into me. My weight was starting to drop quite dramatically and they wanted to try to build up my strength before any operation could be considered. I managed one that evening and a couple the following day but all it was doing was making me more and more bloated. The bag coming from my nose was continually filling with green liquid. I was still feeling terrible at this point.

With this in mind, the surgeons didn’t want me to lose more weight, making my recovery harder. So, after much discussion it was decided that i would go in for an operation to have a reversible (temporary but possibly permanent) ilioscopy and have a stoma created. This would allow my bowels a chance to rest and heal itself. Now this, for an active and relatively young man of not even 40 was an incredibly scary thought. In my ignorant view, stomas were only for old, wheelchair bound people or people who were suffering from cancer. I was so worried that my career as a PT was over. I’d never be able to teach classes, play football or be active ever again. But with research and education and discussion with my wife i realised that this procedure was not the end of my life. Many people a lot younger than me had stomas for varying reasons and it should not stop you from doing anything. Yes, it would involve changes, but those changes should be embraced.

I had the operation on Friday 19th June. In total the op and recovery took around 7 hours and i was then taken to a new ward. The following 5 days were taken up with the usual hospital type stuff. Regular checks and medication, trying to eat and getting through ALOT of pain. I also had to learn how to empty by bag and clean the stoma site.

I was eventually discharged yesterday, Wednesday 24th June, 13 days after being admitted. The next Phase of my journey is now beginning, recovery. I have lost around 14lbs in body weight and my strength has dropped considerably, but i will rebuild again.

25/6/20

A few bits and bobs i came out of hospital with