My Personal Experience of Crohns Disease
A Little Bit of Background
I have suffered from Crohns Disease, a form of Inflammatory Bowel Disease, for almost 5 years now. I suffer from many of its side effects including uveitis, erosive gastritis and vitamin B12 deficiency. I have had multiple colonoscopies and endoscopies but have thankfully never had to have any kinds of surgery on my gastrointestinal tract.
I was in my final GCSE examination. Truthfully, I was glad that all the stress of revision classes and wads of practice papers were going to be over: I genuinely think if I had seen one more red pen that I was going to lose my mind. Settling into my (very uncomfortable) wooden chair, I prepared myself for what was going to be the end of an era for me.
My mind went into overdrive as I began my paper: thankfully, I had memorised the entire of To Kill a Mockingbird and soon had three sides of paper covered in rushed writing. Without warning, what I can only describe as the most horrific pain I had ever encountered threatened to knock me out. My stomach felt akin to what being stabbed one thousand times in the stomach must feel like. A wave of nausea ran through me like electricity, and I began to see stars as fatigue hit me like a speeding train. My stomach felt like it was ripping apart, with a noise to match.
Silently trying to make myself feel as small as I physically could, the pain crept through my every limb, into my fingertips, through my head, like a million tiny feelers. You see, for two weeks, I had been suffering from what felt like a chronic stomach ache, climbing into bed when I got home from school and eating just enough to keep myself going. I had no appetite and all I could think of was this overwhelming siege on my body, of which I had no understanding. I had visited the doctor multiple times, where they recommended plenty of rest and relaxation.They had no idea as to why I was feeling this way.
Anyway. I was curled up over my desk, my hands shaking from the effort of not screaming, when a shadow fell over me. An adjudicator was standing beside me with a look of complete shock on her face. Gently taking my arm, she asked me was I okay. Later, she told me I was whiter than an anaemic ghost and I had bags under my eyes which could have been competition for our Bags for Life.
I explained how I was feeling: I just wanted it to stop. Unbelievably, she then told me that the main reason she had came over was, unfortunately, the amount of students taking drugs before exams was on the rise, and she honestly thought that I had taken something. I gaped at her. I told her I had to go back to my exam, and that I would be ok. I somehow managed to continue writing as the seconds ticked by, until finally I was able to hand in my exam. I have never been so pleased to leave somewhere in my life.
This was to be the start of a long road of pain and being uncomfortable, from which there was no return.
Annoyingly Upbeat People
I remember the first time I had to be taken into hospital: I had felt like I had the most abhorrent flu you can imagine for the whole day. I tried to sleep it off, waking every few hours and feeling worse than before. My grandparents, who I lived with, had been away for quite a bit of the day, and, on their return, I called for my grandmother to come up the stairs. I asked for an ice lolly as I was parched with thirst and thought it might help: I was actually so weak I could only eat it whilst lying down and could only hold it up for about three seconds before I had to rest again.
Long story short, I went to the doctor who immediately told me to go to hospital. I spent two hours waiting where I threw up about seven times: this doesn't sound so bad, except for the fact that my vomit looked and had the consistency of wallpaper paste.
Apparently, I had become so dehydrated through my million-and-one trips to the bathroom that my kidneys were no longer working properly. I was hooked up to a couple of drips with painkillers, saline fluid and steroids.
You can only imagine how I felt when they said I had to stay in. I just wanted to go home and for all of the pain and sickness to stop.
I remember finally getting to sleep at about 9pm, and waking up in a rather bleary state in the morning. Probably had something to do with being woken up constantly by noisy machines and having my blood pressure monitored. A bright-eyed, bushy-tailed nurse, who I can only assume was in training, came skipping over to me, whereupon informing me that I was on "nil by mouth" and I wasn't allowed anything to eat. Cow.
Throughout the day, and the following days where I was practically a medical prisoner, a parade of doctors and nurses traipsed past my bedside. Now, this wouldn't have bothered me if it were not for the look on their faces which led me to believe they had won the Euromillions jackpot and this was their last day of ever having to be face to face with the lower working class.
Throughout my almost-five-years of having Crohns Disease I have been very close to throwing various overly-happy people across rooms.
When unwell, it is only fair that the rest of the world be in mourning until you are able to grace them with your presence again. Thereby, when surrounded by happy campers, you begin to question your sanity.
- Yes, I know I look absolutely healthy and fine, but I'm not. My insides are covered in ulcers and inflammation. I am constantly suffering, trust me. My eyes are constantly producing nasty discharge. I spend wayyy too much time in the bathroom. And you obviously haven't seen me on a bad day.
- No, I am not a "lazy cow who just doesn't want to get out of bed". I suffer from chronic fatigue, and simply walking up the town leaves me with the energy of a dead slug. Cleaning and tidying the house makes me feel like I'm preparing for the Olympics. Even standing for a ten-minute shower makes me want to lie on the floor and cry.
- No, I am not just trying to get money from the government so I can lie around and do nothing all day. To this day I am still ashamed that, firstly, I cannot get a job due to my illness and secondly, even if I did manage to get a job, I couldn't hold it down as there are days where I simply cannot get out of bed. My grandparents have worked their fingers to the bone all of their lives and I feel like I am letting them down.
- No, it truly is as bad as it sounds. I find it abhorrent that people pretend to have illnesses and medical problems either to receive benefits or get attention. I would happily swap with anyone who thinks I am only looking for attention. And I'm not swapping back.
Crohns Disease tends to make its sufferers lose their appetite, thereby losing weight. I eat very little every day, and tend not to eat breakfast or lunch. If I try to eat when I'm not hungry, you can be sure that it will be introduced to the toilet after about ten minutes.
There appears to be no justice in the world: while just about everyone else seems to lose weight due to Crohns Disease, I have, in fact, put on about four stone since my diagnosis.
Steroid medication initially made me swell up like a balloon. My face resembled an overly-inflated football. After spending in total about two years of my life on this medication, I can honestly say that I have seen sumo wrestlers with a lower BMI than myself.
When I am able to wean myself off my steroids, I do begin to lose weight. My main issue is that I am not able to exercise: my panic-anxiety disorder makes me unable to stray too far from my home, and the extreme fatigue that I suffer from means that I spend some days moving less than a hungover sloth. When I do begin to lose weight, it doesn't stay away for long before it comes back with a vengeance.
It is very embarrassing to have put on so much weight. My clothes don't fit, so I buy new ones, then I lose weight, so I buy more, then I put some more on and those clothes don't fit. I currently own a pair of jeans that are too big but just about fit, and another whose whereabout are unknown.
Yes, I Am Grumpy
I think I have earned my right to be grumpy. It should be illegal for people to tell others to cheer up. Some days, yes, I am in a very good mood, but when someone comments on this, I immediately detest them. Perhaps, some day, if the medical and scientific fields advance far enough to come up with a cure, I'll be a happy chappy, but until then, I will continue to be grumpy!
Do you suffer from Crohns Disease?
UK Crohns and Colitisation Organisation
- Crohn’s Disease | Crohn's & Colitis UK
A UK-based organisation who provide information on both Crohns Disease and Colitis, and provide information for various support groups to help individuals who suffer from Inflammatory Bowel Disease.
Crohns and Colitis Community
- Crohn's & Colitis Community
The Crohn's & Colitis Community provides a place to share your thoughts about Inflammatory Bowel Disease (IBD).