Crohns Disease…My rocky road to diagnosis


It took over 20yrs, until my late forties, to finally get a diagnosis of Crohn’s Disease. I’ve probably had it for all of my life. I’m not blaming the medical system for all of that. I think there are many reasons people are diagnosed late or correctly and that signs are missed. Firstly, it appears difficult to diagnose until symptoms become chronic, and this can be when you have regular diarrhea, bleeding and/or, as in my case, unexplained vomiting, difficulties digesting fibre and chronic fatigue.

Secondly, there is a lack of consistency when seeing GP’s at the surgery. I believe that if I saw the same GP, it would give them an opportunity to get to know me, to become familiar with my symptoms over a period of time and be able to recognise the signs and symptoms of Crohn’s Disease much earlier. A bit like a jigsaw puzzle, putting the pieces together and building a picture until the final piece is put in place and then voil la! Diagnosis! Often we can see various GP’s and not all of them have time to read their patients medical history before appointments, a reality of the tremendous pressure that the medical profession are under. Within all of this, GP’s have different ideas, theories and, to be honest, different levels of interest in finding a diagnosis and this can result in long term treatment of symptoms without getting to the cause. So within these circumstances its going to be a struggle to pinpont Crohns Disease.

I played my own part in the delay and I take responsibility for my intermittent visits to the GP’s. At one point in my thirties, after symptoms became increasingly disruptive, I had an endoscopy and told it was probably IBS. I was offered a further test, which would involve swallowing a dye and having an X-ray. I was reluctant as I was finding the whole process very stressful and agreed an IBS diagnosis. From that point I looked at managing my physical and mental health to improve my well being. With hindsight this was a positive change and, although I was treating the symptoms rather than cause, these changes were not wasted and gave me a new work life balance and healthier outlook and lifestyle.

My symptoms became enduring and more debilitating as I ambled through my forties. I felt as though I always had a cold, I felt tired, sometimes this was severe, and I began vomiting after meals. I decided to try and get a diagnosis and some support with my diet. The first GP at a new surgery was very thorough and referred me for an allergy and breathing test. Both were clear, which now makes me understand why antihistamines didn’t help at those times. Even so, I was so conviced it was an allergy I thought the allergy test had been done wrong!

I returned to the GP surgery and saw a different GP, not through choice. She strangely seemed to want to diagnose me there and then and told me I needed a carb, a protein and fats each day and drew a diagram of how the digestive tract erodes as we age. I still don’t know to this day whether this GP thought that telling me that would be enough for me to go away and make the necessary changes to my diet to make a difference. There was no detail, no more more information offered. I said I’d need more help than that, and thought I needed a dietician to help me look at what’s happening and how I can manage my health with the issues I was facing. “You won’t get that on the NHS.” she told me and I explained “that’s why I’d like a referral for my health insurance.” This was received by a big sigh. After a difficult discussion, why it was difficult I have no idea! Other than I felt she was being unhelpful, obstructive and unnecessarily difficult , I still have no idea why she was reluctant to do it, but I persevered and finally a letter to a gastroenterologist was agreed.

An appointment was soon booked and I went for an initial consultation. How different the private system is. The consultant came and collected me and he asked what was happening. After relaying my history and current situation, that I was running out of food that I was able to eat without some issues, he asked what foods I couldn’t eat.
“It’s quicker to tell you what I can eat…cheese, fish, crackers, cheese, yogurt, only one yogurt though, chocolate, crisps. Have I mentioned I can eat cheese?”
“Can you eat jacket potatoes?”
“Yes, but not with baked beans. But I can have cheese.”
Then an examination followed. Well I don’t like to make a fuss and I think I have a high pain threshold, so as he examined me I didn’t react. Realising he needed to know where it hurt or was sensitive, I prodded myself and said ‘here’ and here’ moving my palm around my stomach and abdomen. Yes, it was a bit odd. Then it got weirder when he asked if he could push my side. Now I know I’m not as slim as I used to be, but I’m not that big! I wondered if he was expecting my stomach to go into a ripple or wave motion, so I agreed and he pushed my side and we both looked intently at my stomach. I have no idea what I was looking for and I didn’t ask what he was looking for either!
Then I moved back to the chair and he asked about my family history, I just mentioned in passing that Crohns was in the family. I recognised the look he gave me. It’s like he knew as soon as I said that.
He said that he wanted to do a colonoscopy. Well, call me old fashioned, but that part of my body is, and always has been, ‘Exit Only’. I looked at the consultant.
Trying to sell it to me he said ” It’s just a thin pipe, just like this” and lifted up his stethoscope and waved it around to show me. Nope, that wasn’t convincing me.
So he upped the offer…”we could offer some anesthetic….”
Yep! That will do it! “Sold!”
Ok, my theory being, I need to have it done, but I don’t want any pain. So with the deal struck, an appointment was arranged. And that’s when the fun really began! 🙂

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