I'm 22, male and from England and I've finally decided to create an account on the website after a few years of occasionally checking on what people have to say.
I'm not entirely sure when my symptoms began but I lived a relatively healthy life up (even if i was almost underweight) until I was about 16/17. I'd get flu like symptoms going to the toilet often and just feel sick every few months and occasionally vomit . Doctors weren't sure what was wrong with me some said virus and some said I was just stressed and at one point I had an exploratory colonoscopy which didn't find anything. I was miserable. This continued until I was around 18/19 and then the abdomen pains started. At first it was random coming and going and then at one point it was every day for about a week. I was sick of going to hospitals and doctors so I just took a few paracetamol to numb the pain and try to carry on. One day I just felt terrible and the paracetamol wasn't working. The pain stayed there all day and I started to feel worse so I decided to have an early night (something extremely rare for me). I didn't sleep well the pain constantly waking me up and eventually at 6:00am it got too bad. I had to go to the hospital.
My Dad woke up straight away and drove me there, every bump in the road increasing the pain as we went along. Eventually we got there and the first doctor to see me thought I might have appendicitis, something I found hard to believe. Eventually the main surgeon came in and doubted the diagnosis and sent me to have an ultrasound. I went for an ultrasound and in less than 5 minutes he knew what was wrong. "That looks like Crohn's disease". It had taken 5 minutes to find out what 2 years of doctors couldn't figure out. I was briefly elated. Finally they knew what was wrong! My elation quickly faded as it was revealed that Crohn's disease is incurable. Great.... I spent much of the next week in hospital hooked up to fluids and steroids and I met the medical team I would come to know over the next few years. They explained that my disease was located in the small intestine near the ileum. I was prescribed prednisolone and was discharged.
After a checkup it was revealed they wanted to start me on azathioprine to try and help things started to be going well until December 24th at around 11pm. Pain. But it was unlike any pain i've ever felt before I was in complete agony. Then the vomiting started. It would temporarily believe it then and then i'd just pass out/sleep. Over and over and over. This happened until about 9 the next morning. I was spent but finally there was no pain and no more vomiting. The doctors said I'd likely had a reaction to the azathioprine. Next they tried mercaptopurine. Little over a month later and the same happened (the night before one of my university exams). Great timing. Again the pain was enormous and the vomiting was constant. Finally stopping in the morning again. I took the exam (which I badly failed) and traveled back to my parents. Something was very wrong. More appointments, more tests. Different doctor. They believed my bowel may have partially obstructed and i'd need surgery. They sent me for another ultrasound. I will always remember the look on the guy who performed it. I don't know if it was shock or the fact he knew things were badly wrong. He disappeared for a few minutes and then came the surgeon I met before and my new doctor. They explained that the situation was worse than before and i'd need surgery in the coming days and i'd likely need a ileostomy. The one thing I wanted to avoid. Another appointment before the surgery and my hopes were somewhat raised, I might actually avoid a stoma!
Surgery. I remember being surprisingly calm. I went in and I went to sleep. I woke up really groggily in the post-op and started to move around and a bunch of nurses ran over to me to stop me checking my wounds. I asked if I ended up having a stoma and they said yes. I was completely crushed and inconsolably sad. The surgeon came to see me and said after starting surgery it was apparent things were worse than expected. The surgery was expected to last a bit over 2 hours and ended up lasting nearly 5. There were several joined bits of intestine and parts were starting to form fistulas and had to be removed. I don't remember the number of inches of intestine I lost but it was numerous. The week in hospital was difficult. I was very high on morphine due to the large amount of pain I was in. I also had a difficult time walking due to the severity of the surgery. A week after the surgery I was discharged.
Everything about the stoma I hated. I couldn't sleep properly due to being used to lying on my front or side and that didn't go well with my stoma. The output was very acidic liquid and would burn my surrounding skin. I couldn't really do sport and I couldn't live a normal life and I had to take a hiatus from university. I ended up becoming horribly depressed. I spent nearly 6 months in my bedroom. Every time I saw my doctors and surgeon I'd always push for the possibility of reversing it. Eventually in September it was reversed and I remember waking up and never being happier. The wound took months to heal but it wasn't too bad and when it had fully healed I was elated that I felt somewhat normal again. Due to the amount of intestine removed food does pass through me faster but I take a prescribed powder that alleviates this. My life is finally back in order and I feel alive again
.
I appreciate that anybody who actually took time to read this will find it difficult to follow (i'm not a natural writer) and a long read and I apologise. I just felt the need to share.
I'm not entirely sure when my symptoms began but I lived a relatively healthy life up (even if i was almost underweight) until I was about 16/17. I'd get flu like symptoms going to the toilet often and just feel sick every few months and occasionally vomit . Doctors weren't sure what was wrong with me some said virus and some said I was just stressed and at one point I had an exploratory colonoscopy which didn't find anything. I was miserable. This continued until I was around 18/19 and then the abdomen pains started. At first it was random coming and going and then at one point it was every day for about a week. I was sick of going to hospitals and doctors so I just took a few paracetamol to numb the pain and try to carry on. One day I just felt terrible and the paracetamol wasn't working. The pain stayed there all day and I started to feel worse so I decided to have an early night (something extremely rare for me). I didn't sleep well the pain constantly waking me up and eventually at 6:00am it got too bad. I had to go to the hospital.
My Dad woke up straight away and drove me there, every bump in the road increasing the pain as we went along. Eventually we got there and the first doctor to see me thought I might have appendicitis, something I found hard to believe. Eventually the main surgeon came in and doubted the diagnosis and sent me to have an ultrasound. I went for an ultrasound and in less than 5 minutes he knew what was wrong. "That looks like Crohn's disease". It had taken 5 minutes to find out what 2 years of doctors couldn't figure out. I was briefly elated. Finally they knew what was wrong! My elation quickly faded as it was revealed that Crohn's disease is incurable. Great.... I spent much of the next week in hospital hooked up to fluids and steroids and I met the medical team I would come to know over the next few years. They explained that my disease was located in the small intestine near the ileum. I was prescribed prednisolone and was discharged.
After a checkup it was revealed they wanted to start me on azathioprine to try and help things started to be going well until December 24th at around 11pm. Pain. But it was unlike any pain i've ever felt before I was in complete agony. Then the vomiting started. It would temporarily believe it then and then i'd just pass out/sleep. Over and over and over. This happened until about 9 the next morning. I was spent but finally there was no pain and no more vomiting. The doctors said I'd likely had a reaction to the azathioprine. Next they tried mercaptopurine. Little over a month later and the same happened (the night before one of my university exams). Great timing. Again the pain was enormous and the vomiting was constant. Finally stopping in the morning again. I took the exam (which I badly failed) and traveled back to my parents. Something was very wrong. More appointments, more tests. Different doctor. They believed my bowel may have partially obstructed and i'd need surgery. They sent me for another ultrasound. I will always remember the look on the guy who performed it. I don't know if it was shock or the fact he knew things were badly wrong. He disappeared for a few minutes and then came the surgeon I met before and my new doctor. They explained that the situation was worse than before and i'd need surgery in the coming days and i'd likely need a ileostomy. The one thing I wanted to avoid. Another appointment before the surgery and my hopes were somewhat raised, I might actually avoid a stoma!
Surgery. I remember being surprisingly calm. I went in and I went to sleep. I woke up really groggily in the post-op and started to move around and a bunch of nurses ran over to me to stop me checking my wounds. I asked if I ended up having a stoma and they said yes. I was completely crushed and inconsolably sad. The surgeon came to see me and said after starting surgery it was apparent things were worse than expected. The surgery was expected to last a bit over 2 hours and ended up lasting nearly 5. There were several joined bits of intestine and parts were starting to form fistulas and had to be removed. I don't remember the number of inches of intestine I lost but it was numerous. The week in hospital was difficult. I was very high on morphine due to the large amount of pain I was in. I also had a difficult time walking due to the severity of the surgery. A week after the surgery I was discharged.
Everything about the stoma I hated. I couldn't sleep properly due to being used to lying on my front or side and that didn't go well with my stoma. The output was very acidic liquid and would burn my surrounding skin. I couldn't really do sport and I couldn't live a normal life and I had to take a hiatus from university. I ended up becoming horribly depressed. I spent nearly 6 months in my bedroom. Every time I saw my doctors and surgeon I'd always push for the possibility of reversing it. Eventually in September it was reversed and I remember waking up and never being happier. The wound took months to heal but it wasn't too bad and when it had fully healed I was elated that I felt somewhat normal again. Due to the amount of intestine removed food does pass through me faster but I take a prescribed powder that alleviates this. My life is finally back in order and I feel alive again
.I appreciate that anybody who actually took time to read this will find it difficult to follow (i'm not a natural writer) and a long read and I apologise. I just felt the need to share.
