Crohns and my Ileostomy

After reading through all of that, you’re probably wondering what happened to those bowel issues I had?

Well, when I was bed-ridden for the 7 weeks when my lung disease was diagnosed, I wasn’t able to use a toilet. I had to use a commode next to my bed and a nurse had to record my every output; which of course was always watery/loose, sometimes containing blood, and far too frequent. But, at that moment in time it didn’t take priority over my lungs, it was discussed with the doctors looking after me and they were aware that I had previously been referred to gastroenterology and I’d refused a colonoscopy.

It was when I got referred to Ravi (Respiratory consultant) at Addenbrookes hospital in the September (2004) that he flagged it up as a fairly worrying matter. He managed to get me a referral to Dr M, who has also continued to look after me to this day. At 16, I finally agreed to have the colonoscopy, although I opted not to have any sedation. The results came back as inconclusive and they couldn’t really find anything sinister, which was a little disheartening because they couldn’t tell me what was causing the pain and watery-diarrhoea.

Life went on, as it does; I survived my GCSE’s and made it to the end of high school with pretty rubbish grades after all the schooling I’d missed. Despite that, I was lucky enough to get a place at college to study A-levels in English, Law and Biology; providing I re-sat my GCSE maths, which I was happy to do.
It was all a bit daunting, I still had so little confidence after my lung diagnoses and coping with the breathlessness wasn’t easy. To add insult to injury, my bowel issues were worsening and I would have more and more accidents. I would limit my intake to manage the pain and diarrhoea, which in turn made me feel lethargic and exhausted by the end of the day. As the cold of winter drew nearer I’d struggle with my breathing, which exhausted me even more; every day felt as if I was running a marathon. Back then, my lungs were just about strong enough to oxygenate my blood when walking slowly; running for the toilet when you have faecal incontinence with lung disease is like trying to stop the tide from coming in = It isn’t gonna happen!

By December, it had all become too much. I developed a nasty chest infection because of the weakness in my lungs, the cold, and my lowered immune system from heavy steroid use. Coping with all of that on top of crippling stomach pain and diarrhoea was getting me down badly. I discussed the issues I was having with Dr M and I had another colonoscopy, this time with sedation. But, once again they couldn’t get high enough in to the bowel, so once again it was inconclusive. Shortly afterwards (August 2006) was when my right lung collapsed and so again the bowel issues were temporarily put on the back-burner.

Things seemed to settle for a while, usually when I was on a high dose of steroid for my lungs, it worked well for easing my bowel problems, too. I had a third and fourth colonoscopy over the next couple of years, still displaying the same inconclusive result. I was hospitalised in April 2009, but this time it was for the immense bowel pain I was experiencing. They had suspected crohns for many years, but couldn’t detect it with a scope, which baffled them, so they didn’t know how to treat me. I was sent packing with a box of Tramadol to control the pain and that was it once again.

The turning point came in October 2009 when a different GI carried out my fifth colonoscopy. He had managed to get high up in to the bowel, until he came across such an extreme narrowing, near to the terminal ileum, that he couldn’t even get a 5mm paediatric scope through. Although I was heavily sedated, I was screaming because the pain was so extreme (so I’m told), and it was unsafe for them to carry on.

It was then that I was introduced to my colorectal surgeon Mr H and we agreed that doing an Exploratory under GA was the only way we could find out what was really going on in my bowels. Hopefully it would reveal what was inflicting so much pain and misery on me.

It became a bit of a waiting game as I couldn’t be operated on unless there was a bed ready in intensive care should my lungs fail with the general anaesthetic, which is always the main concern. And, weighing only 5st 5lbs made it even more risky. I signed the consent form and it was explained to me that should they need to carry out any invasive surgery there was a possibility I would wake up with a stoma. Back then I was 21 and I thought having a stoma would be the worst thing EVER in the world and something I feared, so I became very scared at this point. Anyway, I eventually got into theatre on the 26th of November, and had a third of my small bowel removed from (and including) the terminal ileum upwards. It was so incredibly heavily diseased and strictured with crohns that when I came round, Mr H actually apologised on behalf of the GI team for failing to get me in to theatre months, if not years, ago.

It was a serious piece of road-kill! The first thing I did was ask if I had a ‘bag’, I remember feeling my abdomen and breathing a huge sigh of relief that all I could feel was my skin. But, of course, it wasn’t all smiles because I had now officially been diagnosed with crohns disease.

Life improved to a point after having the resection, all of that horrid pain I’d been enduring 24/7 had completely disappeared, for a while at least. It took a good few months to recover and luckily we could just about afford for me not to have to return to work. Despite having the gruesome length of affected bowel removed, the watery and desperate diarrhoea never ceased. It was still ruling my life to some extent, nowhere near as bad as it was pre-resection, but it disheartened me all the same. I plodded along for the next couple of years, soiling myself when that sudden urge and panic would hit me. Every outing was meticulously planned, not that I ever went out much! I would limit my food intake to the point that I wouldn’t eat to minimise the risk of defecating myself; eating out was something I never could do either. I had a ‘portable toilet’ bag as I called it (Mum put it together for me), it contained bed wetting pads, a potty, toilet toll, wet wipes and rubbish bags – very glamorous for a 23 year old, but it came everywhere with me and was used several times.

The GI department at my hospital had been particularly busy over the past 18 months which meant my appointments to see my GI (Dr M) would be sparse, cancelled or worst still I would have to do the cancelling because I just could not leave the house for the draining cramps and watery/bloody diarrhoea that sapped my every ounce of energy. The hospital I’m under is a good hour and twenty minute drive from where I live; those of you that have severe crohns disease will appreciate what an incredibly mammoth task that is when you spend every hour god sends glued to the porcelain. It was clear to see that things once again weren’t as they should be and I eventually made it to hospital to see Dr M February 2013. I was so extremely exhausted, malnourished and weak that I just burst out crying, I was finding it so difficult to carry on with it all. I had an external examination because I had also developed a massive ischiorectal abscess, about an inch from my anus, which would drain via a fistula from the anus. It would seep persistently and was very sore.

Dr M was really good and managed to book me in for an urgent colonoscopy two weeks later. I had the scope, along with copious amounts of sedation, but it proved particularly tricky as I was in huge amounts of pain around my anus. Eventually they got the scope in and it wasn’t good news; I had now developed severe crohns disease in my anus, rectum and the lower part of my colon. They had struggled to insert the scope as the inflammation in the anus had caused bad anal stenosis (narrowing). I received a phone call the following week and it was agreed that I would be started on Humira (adalimumab anti-tnf treatment). I’d heard many positive stories about controlling crohns with Humira, so I was excited at the prospect of being able to live a relatively normal life.