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.
Destination Crohn’s Colitis
Diagnosing the exact form of IBD is never straight-forward and I discovered as time progresses the disease you have can also be given many names.
Upon first diagnosis, the inflammation I was experiencing was at the tail-end so was told I had proctitis. Over time that evolved into ulcerative colitis which remained the diagnosis for some time.
Then on blood forms the name Indeterminate Colitis appeared which I discovered was used to describe 10-15% of IBD patients where it was unclear whether they had Ulcerative Colitis or Crohn’s. The sudden appearance of peri-anal abscesses was helping point towards Crohn’s and MRI tests and a colonoscopy confirmed that I had Crohn’s.
BUT, to complicate things further the type of Crohn’s I had was Crohn’s Colitis! The name is confusing in that some patients think they have both Ulcerative Colitis AND Crohn’s but in fact it means that they have the trademarks of Crohn’s but it’s restricted only to the colon.
Keeping the Crohn’s in Check
For the most part my condition was kept under control with medication – mainly Balsalazide and Azathioprine – although I have tried many others along the way.
I didn’t experience too many flareups and they could be controlled again by introducing steroids or enemas. Only once was I hospitalised after food poisoning caused a bad flareup. I was able to lead a normal life and I found that things that I ate and drank never interfered with my condition.
However, around four years ago I suffered a big flareup and the medication I was taking wasn’t working and a course of steroids didn’t help with the inflammation.
Peri-Anal Abscesses – Worse than Giving Birth?
A woman once told me that the pain associated with a peri-anal abscess is worse than giving birth. Obviously I haven’t given birth but can attest to the pain of a boil on your bum being excruciating.
I had no idea what was happening the first time I had one and experienced the fever before I noticed the lump. My doctor prescribed some antibiotics but two days later I was in surgery having it drained.
This was to be the first of many abscesses that I would have the pleasure of experiencing including having two separate ones with 1 week of each other! I ended up becoming so used to them that I could skip seeing the GP and just head straight to the hospital to have it drained.
Judging by those scars, that definitely looks like the bum of someone suffering from Crohn’s.Surgeon when I told him I had Indeterminate Colitis
It was only through having the abscesses that I discovered that I was more likely suffering from Crohn’s rather than Ulcerative Colitis.
Humira – Miracle Cure?
Whilst I was in the middle of the flareup I was pre-booked to have a colonoscopy which would be a good opportunity for my specialist to see what exactly was happening. Due to the inflammation the procedure proved to be difficult to tolerate and had to be stopped mid-way through. The inflammation was extensive and for the first time my specialist had brought up the possibility of surgery. He listed the pros and cons of surgery – there were a lot more pros than cons – but I wasn’t quite ready for such a life-changing operation.
So instead I was offered a different treatment – Humira. And it worked! It was a like a miracle cure that in a short time reduced the inflammation and I was back to ‘normal’. After around 2 years taking the medication I was taken off it and maintained the condition with the Balsalazide and Azathioprine.
The Flareup that Broke the Colon’s Back
April 2018 and my first flareup in a few years. As usual with a flareup the first step was to try a course of Prednisone steroids but there was no change so the next step was to start taking Humira again. Based on past experience I was confident that within a month or so everything would be back under control. As the weeks progressed there were no signs of improvement and by the time I reached 12 weeks it was clear that Humira was no longer my miracle cure.
The manufacturer of Humira specifies that if there is no improvement within 12 weeks then the drug probably isn’t working for you so it was back to see the specialist.
With my normal mix of Balsalazide and Azathioprine not keeping the condition under control and neither Prednisone nor Humira helping, I was given two options – try another medication similar to Humira or have surgery to remove the infected part of the bowel.
During the 5 months I had been going through the flareup I had never given surgery a thought, I had always hoped the Humira would work and even when it didn’t I hoped that something else would. But when my specialist had mentioned surgery I almost immediately responded with a yes. Sure I could try another medication but I’d have to give it time to work and there was a chance that I could go for three months or more and still be in the same place.
Even though my specialist didn’t offer any recommendations which way I should go, with his knowledge of my condition and journey over the last 16 or so years, I could sense that he thought surgery was the best option.
And so, the road to surgery began.