My story...
I had a flare up around summer 2011, persevered for a few months on no meds (kind of in denial and happy to lose a few pounds to be honest). Until it stepped up a notch; constant trips to bathroom to be sick or worse. I got in contact with my GP to get the steroids and azathioprine as per previous flare ups but they would only prescribe a small amount to tide me over until I saw a consultant. I got an appointment with the specialist nurse and got more steroids and a then azathioprine and a follow up colonoscopy.
Everything seemed to be under control, flare settling down by early 2012 so I thought that everything was sorted. However after a couple of months of being weaned from the steroids I had a sudden onset of sickness that wouldn’t stop with incredibly painful stomach cramps. I went to my GP who suspected food poisoning and told me to wait a couple of days and come back if it hadn’t resolved. I told him I wasn’t happy with this and that I couldn’t keep down even small sips of water but when home none the less. It got worse during the evening so I called the out of hours doctor who said that visiting me would be pointless and if it was that bad I should go to hospital. I explained I had no way to get myself there as I was in no state to drive so he said to call an ambulance. I felt like a complete hypochondriac calling an ambulance, I explained my symptoms and they said they would get a doctor to call back to triage me to see if an ambulance was needed, next thing I knew the ambulance had turned up 20mins later. They assessed me and took me in.
A few hours passed, was put on anti-sickness meds, pain killers, anti-cramping meds via drip and an x-ray. Nothing sinister was found and I was eventually sent home about a day or 2 later.
This happened about every 4-6 weeks for until the summer at which point my Liver reading starting going off the scale and the doctors were asking me if I drink a lot of alcohols… Then the consultant put me on Humira injections. I was optimistic that this could be a turning point and there was no further sickness, still a lot of bloating so I was just getting on with life and work. But I started eating less and I was still getting cramps, I went for one of my regular gastro check-up which happened to be on a good day and mentioned that my stomach was still quite swollen. As a precaution the consultant was called and he felt my stomach but wasn’t overly concerned but requested and x-ray which I had an hour later and went home.
The next day I went to work as usual, went to a meeting, got back to my desk to find I have been emailed to my person and work emails, half a dozen missed calls and voicemails telling me to come straight to hospital and they were finding me a bed. I called back immediately and they said part of my bowel was hugely dilated and to come straight to hospital. This was it, after months of none specific symptoms my condition had deteriorated and surgery was certain. Scar tissue had built up over the duration of my condition to the point that I was almost fully obstructed and the dilated portion of bowel was the build-up before that blockage and it was ready to burst (I later found out that this area of bowel is normally 1cm wide and is sometimes stretched for colonoscopy procedures with air to 2cm, mine was at 5cm). I goggled the operation and what was going to happened and it was daunting, I couldn’t believe there was no further medication that could fix this or no keyhole available. And to make things worse I was told a few days later that I would probably need to have stoma that would hopefully be reversible.
After a lot of mixed emotion and delay tactics from me the operation went ahead and was successful with them checking the rest of my bowel for anymore disease (luckily none), leaving 345cm of small bowel but also a stoma. This was reversed a few months later after me nagging and trying my hardest to get better and put some weight on. I had to resign from work as a contractor. On Christmas Eve 2012 I managed to get myself discharged from hospital 3 days after my reversal surgery – whole once more and disease free. A 3 month course of antibiotics was prescribed.
A year on still doing well had a follow up colonoscopy 6month after my last surgery which was clear and going forward I will have regular gastro follow up, next one in a couple weeks.
Now the question is what lies ahead…
What’s your story and how are you doing?