Today I am gonna be writing the first in a series about something a little more personal than normal – my Crohn’s disease. Maybe the best place to start would be how I was diagnosed.
Around last December, I started suffering from fatigue. It progressed until I was coming in from school, crashing on the sofa and sleeping. This fatigue had a rather profound effect on my schoolwork. Report grades started slipping etc. At first, everyone thought I was just being lazy. I didn’t know what was happening, so I decided I was going to get to the root of the problem.
I booked an appointment with our local GP for around February. I told her all about the fatigue. She send me for some blood tests. I came back as anaemic. At first, because it was the most likely cause, I was prescribed an iron supplement (ferrous fumarate, for those of you interested). More blood tests to check if it was iron deficiency. Next day, I could start taking them. I actually started to feel a little bit better (placebo effect!) but then received the results. It wasn’t iron deficiency. So, I stopped taking the iron. (It had horrible side effects!) More blood tests to see if I had a thalassemia trait (unlikely, I don’t have anyone Mediterranean in my family). They came back as negative. Still no explanation for the symptoms.
Half term came along and I actually started to feel better. I thought everything was over. School started again and it was apparent that it wasn’t. The symptoms came back with a vengeance. I also started noticing joint pains. This made my dad consider the possibility of IBD, especially given my bowels as a baby and more recently. I booked another appointment with the GP. She said that IBD was fairly rare and we should test for that later. I still didn’t know what was going on. I booked another appointment for a couple of weeks later to ask for a referral to a gastroenterologist. She said she’d discuss it with her colleagues.*
About a week later, at around 10:30pm, I started suffering from excruciating abdominal pain. We waited to see if it would subside, but at about 12am we decided I should go to hospital. Then our electricity failed. An hour later, I was finally taken.
First off, I saw the out-of-hours GP. She was convinced it was nothing and wanted to rule out appendicitis. However, she decided to send me home. I told her how I’d been visiting my GP for months to no avail. She tried to get hold of the Paeds surgical SHO. No answer. She left a message. Back to Paeds A&E with the assessment in hand. We took it to the nurse about 10 mins later when nothing had happened and I noticed a sign saying “Take all forms to the nurse” or something along those lines. I was taken to a cubicle.
The Paeds SHO arrived and Dad voiced his concerns that it might be IBD. I said how I’d been going to the GP for a while to no avail. After explaining the symptoms, she agreed that it was quite probably some form of IBD. I had some blood tests done at about 4am, after a sleep. I was then taken to Paeds South, the surgical ward (in case it was something surgical like appendicitis), where I waited. I was seen by a number of other doctors and sent for an ultrasound of my bowel. After this showed thickening of the terminal ileum it was decided that I should be moved to the non surgical ward in the children’s hospital. I waited some more and Mum came in to visit.
After waiting some more, I finally got seen by one of the paediatric gastroenterologists. He explained that they thought I might have Crohn’s disease. It was more than a little hard to take in at the time. Being diagnosed with a lifelong illness like Crohn’s is something I wouldn’t wish on my worst enemy. Anyway, I was given a can of Modulen IBD (disgusting stuff unflavoured) and was on my way.
I had some more tests such as a white cell scan, barium meal and follow through (odd after effects…) and finally a colonoscopy. The prep for a colonoscopy is hell. I also took the option of having it under general anaesthetic (my second time with propofol!) which my other gastroenterologist said was the best option afterwards. What was meant to take something like half an hour took closer to 2 hours. I have very oddly shaped intestines!
In the next installment of ‘Crohn’s disease’ I shall talk about what happened after I was diagnosed.
Goodbye for now.
*a week or so after my diagnosis, we got a referral letter in the post.
You never forget the moment you first hear that word “incurable”. Good on you for talking about it; the more people become aware of IBD the better.
It’s always interesting to hear fellow sufferers tales.
I can vouch for the after effects of the barium follow-through. I was given fair warning about that and though they did tell me to drink plenty of fluids after, I think I need to double it next time 😉
This is pretty much the same thing that happened to me when my Crohn’s disease was diagnosed at age 23, except the excruciating joint pain and abdominal pain and fatigue and the visits to GPs lasted 8 months before I got a diagnosis (I’d had mild symptoms for another 5 or 6 months before that). By the time I was finally referred to a specialist I couldn’t walk because my joints were so swollen and I pretty much wanted to die just so that the pain would end. Just a week before that my GP had told me that my problem was psychological and refused to come and see me, telling me that I should see a therapist. Prior to that another GP had prescribed an anti-inflammatory drug which was specifically contraindicated for patients with IBD. When I went into hospital for a colonoscopy to attempt a diagnosis I was in such a bad way they couldn’t do it and I was admitted to hospital for 2 weeks. At that point my life was basically ruined by the mystery illness – I had to drop out of my college course, my relationship ended, I could barely leave the house.
I am glad that didn’t happen to you – it sounds like you had your dad looking out for you. Having a GOOD and thorough GP in your corner makes all the difference. I wish that IBD was something that more GPs were more aware of – it would save a lot of suffering, and I think it would drastically reduce the number of people turning to BS like MMS in despair.
You are an excellent narrator; I read this article as if it were the beginning of a novel.
The mother cells research is advancing quickly, hope you can get a new illeum through it. It is being researched in Cuba, that I know, and recently in Barcelona a woman with cancer got new breasts through it. ¡HOPE!
My father (age 57) has Crohn’s disease, and I remember stories of how it was affecting him as early as high school. My grandmother had told me that he was close to dying, since he was in such pain and couldn’t keep anything in his stomach. As I grew up, my dad’s diet has gotten more and more restricted as he is able to handle less foods. Currently most vegetables and fruits, sugar and milk irritate his system.
I’m glad that you were able to be diagnosed in such a short time. I realize it may not actually seem short, but a diagnosis within a year is much better than it was in the late sixties and early seventies, when my dad was first exhibiting symptoms.
I’ll send him to your blog, and see what he thinks.
I remember my Crohn’s diagnosis being much the same as yours although it took 6 years of being told I was aneamic (which I was but that wasn’t the end of it), had IBS and “should try and learn to live with it”. Eventually I moved to Belgium after getting married, two weeks later I was so ill I went to a doctor, two weeks later and all those same delightful tests you mentioned I was diagnosed. I always joke about the hellish Colonoscopy prep too, soo the worst part of the whole thing!
I have had a resection (Jan 2006) with 30cm of intestine removed and then went onto Imuran trial. Fingers crossed I have been in remission ever since. I have my bad days but am lucky for now. Hope you have remission soon.
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