- Joined
- May 7, 2014
- Messages
- 46
Hi everyone. My name is Sarah and I wanted to share my story with you all so that hopefully others out there who may be going through the same fight I have been for the last 10 years feel a bit of hope 
So, as my title suggests, I was told by my Gastro consultant today that I have Crohn's disease. She was able to tell this due to my ongoing symptoms I had told her about and through my MRI results which showed thickening and narrowing in my Terminal Ileum and Ileocecal Valve. I think I went into a bit of shock as the doctor relayed the information to me. For the last 10 years, I have been told by every medical professional I've had the misfortune of seeing that there is nothing wrong with me or it is all in my head or it is 'just' Irritable Bowel Syndrome. I went into the hospital today expecting to hear the very same things and felt sick with anxiety wondering where I would go from there. So to FINALLY be told that there is something physically wrong with my bowel took me by complete surprise. And even though I always knew myself there was something wrong and that all of my symptoms pointed to Crohn's, I had completely lost faith in the system ever diagnosing me and putting an end to the misery I have had to endure for so long.
My symptoms began when I was 16. I was completing my A-Level examinations at the time and was suddenly struck down with chronic diarrhoea and abdominal pain. I remember my GP calling me on the phone and advising that I was probably stressed and worried about my school exams and was just suffering with IBS. He advised me to take Loperamide to get me through my exams and to avoid eating too much fibre until my symptoms had settled. At the time, what he said seemed totally plausible and sensible and I had no reason to question him as this was the first time I had ever experienced these problems. But what was to follow for the next 10 years would ruin and restrict my life in so many ways I could never have anticipated it. I began to suffer these bouts of diarrhoea and abdominal pain more frequently but I managed to just about get by with everyday life by taking copious amounts of Immodium and rehydration drinks. I was in university trying to live life to the full and was just about able to keep my GI problems under wraps. However, things came to a head one night when I was staying at my (NEW) boyfriend's flat. I remember being woken in the middle of the night with the worst abdominal cramps I had ever experienced. I think I went into the toilet at around 1am and I was still in there when my now husband got up for work at around 7ish (thank goodness the diarrhoea was not an issue for him!!!) The following morning, I phoned my GP surgery as soon as it opened and was advised to go to A&E due to the severity of my pain and the risk of dehydration. I will never forget the nurse who triaged me when I arrived and just how cruel she was. I was scared, exhausted and completely alone and she made me feel like a hypochondriac that should not be wasting the hospital's time. I was just about to walk out in tears when another nurse alerted her that my temperature was through the roof and I should be admitted immediately. After various tests that seemed to take hours, my appendix and an ectopic pregnancy being ruled out, I was given the all clear to go home as they could not find any obvious course. They informed me that I would however be referred for a Flexible Sigmoidoscopy examination to check for Colitis due to my family history of IBD.
I will fast forward here as I am becoming aware of what an essay this post is becoming. My Flexi Sigmoidoscopy turned out to be the first of many tests and examinations I was put through that would all come back clear over the next 10 years. I had a barium x-ray, a Gastroscopy (the most dreadful one of all), an ultrasound, numerous blood and stool sample tests, and finally a colonoscopy in October last year. Every single test showed nothing and I then spent months being told by my GP that my symptoms were all psychological and I simply needed to meditate to put a stop to them. How wonderful if that would have worked! I have become progressively worse over the years with my main symptoms these days being diarrhoea, severe abdominal pain, nausea/vomiting, night sweats, nocturnal diarrhoea, weight loss, extreme fatigue, bloating, loss of appetite, muscle weakness, joint pain in my elbows, constant localised pain in my lower right abdomen and generally feeling really really unwell. My flare ups have become more frequent and severe by nature and I was at my GP surgery so often I was considering setting up camp there.
After losing my 2nd job to this horrible illness and being in a complete state of despair, my GP made the first sensible decision in years and sent me to see a Specialist Community GI doctor. It took him about all of 10 mins to conclude I absolutely did not have Irritable Bowel Syndrome but what he suspected to be inflammation in the small bowel. And today after an MRI and an appointment with a GI Consultant, this was confirmed.
So I'm sat at my computer now drinking a cup of tea trying to work out exactly how I feel. I think I have been through every emotion since this morning - shock, relief, worry, anger, fear, smug. And then I realise how mad that sounds - relief that I have a lifelong illness that can never be cured. But then I think about the last 10 years and what I have been through and I don't blame myself for feeling that. I have lost count of how many times I have cried or felt like giving up, how many times I have wanted to slap people across the face when they say something like "oh, so you just have a bad stomach now and again?" I have had the most frustrating and exhausting battle for so long and now I feel like it is finally over and I can focus on getting better. I know there is still a long road ahead and I have already been told I have to have another colonoscopy to discover the extent of the damage caused by the inflammation. I am possibly facing surgery to resect my bowel and I will probably be on some horrid medication for the rest of my life but if these things give me my quality of life back, then bring them on!
I'm sorry this is SUCH a long post but all I really want to say is I only got here through trusting my instincts, fighting for what I knew all along and not being afraid to demand what I am entitled to from the medical professionals treating me. It's a hard fight and you may get palmed off more times than you can even remember, but don't ever stop fighting to get your life back. Crohn's Disease isn't a life sentence and for the first time in 10 years, I actually feel hopeful.
I look forward to getting to know you all and hearing all of your experiences
Sarah x
So, as my title suggests, I was told by my Gastro consultant today that I have Crohn's disease. She was able to tell this due to my ongoing symptoms I had told her about and through my MRI results which showed thickening and narrowing in my Terminal Ileum and Ileocecal Valve. I think I went into a bit of shock as the doctor relayed the information to me. For the last 10 years, I have been told by every medical professional I've had the misfortune of seeing that there is nothing wrong with me or it is all in my head or it is 'just' Irritable Bowel Syndrome. I went into the hospital today expecting to hear the very same things and felt sick with anxiety wondering where I would go from there. So to FINALLY be told that there is something physically wrong with my bowel took me by complete surprise. And even though I always knew myself there was something wrong and that all of my symptoms pointed to Crohn's, I had completely lost faith in the system ever diagnosing me and putting an end to the misery I have had to endure for so long.
My symptoms began when I was 16. I was completing my A-Level examinations at the time and was suddenly struck down with chronic diarrhoea and abdominal pain. I remember my GP calling me on the phone and advising that I was probably stressed and worried about my school exams and was just suffering with IBS. He advised me to take Loperamide to get me through my exams and to avoid eating too much fibre until my symptoms had settled. At the time, what he said seemed totally plausible and sensible and I had no reason to question him as this was the first time I had ever experienced these problems. But what was to follow for the next 10 years would ruin and restrict my life in so many ways I could never have anticipated it. I began to suffer these bouts of diarrhoea and abdominal pain more frequently but I managed to just about get by with everyday life by taking copious amounts of Immodium and rehydration drinks. I was in university trying to live life to the full and was just about able to keep my GI problems under wraps. However, things came to a head one night when I was staying at my (NEW) boyfriend's flat. I remember being woken in the middle of the night with the worst abdominal cramps I had ever experienced. I think I went into the toilet at around 1am and I was still in there when my now husband got up for work at around 7ish (thank goodness the diarrhoea was not an issue for him!!!) The following morning, I phoned my GP surgery as soon as it opened and was advised to go to A&E due to the severity of my pain and the risk of dehydration. I will never forget the nurse who triaged me when I arrived and just how cruel she was. I was scared, exhausted and completely alone and she made me feel like a hypochondriac that should not be wasting the hospital's time. I was just about to walk out in tears when another nurse alerted her that my temperature was through the roof and I should be admitted immediately. After various tests that seemed to take hours, my appendix and an ectopic pregnancy being ruled out, I was given the all clear to go home as they could not find any obvious course. They informed me that I would however be referred for a Flexible Sigmoidoscopy examination to check for Colitis due to my family history of IBD.
I will fast forward here as I am becoming aware of what an essay this post is becoming. My Flexi Sigmoidoscopy turned out to be the first of many tests and examinations I was put through that would all come back clear over the next 10 years. I had a barium x-ray, a Gastroscopy (the most dreadful one of all), an ultrasound, numerous blood and stool sample tests, and finally a colonoscopy in October last year. Every single test showed nothing and I then spent months being told by my GP that my symptoms were all psychological and I simply needed to meditate to put a stop to them. How wonderful if that would have worked! I have become progressively worse over the years with my main symptoms these days being diarrhoea, severe abdominal pain, nausea/vomiting, night sweats, nocturnal diarrhoea, weight loss, extreme fatigue, bloating, loss of appetite, muscle weakness, joint pain in my elbows, constant localised pain in my lower right abdomen and generally feeling really really unwell. My flare ups have become more frequent and severe by nature and I was at my GP surgery so often I was considering setting up camp there.
After losing my 2nd job to this horrible illness and being in a complete state of despair, my GP made the first sensible decision in years and sent me to see a Specialist Community GI doctor. It took him about all of 10 mins to conclude I absolutely did not have Irritable Bowel Syndrome but what he suspected to be inflammation in the small bowel. And today after an MRI and an appointment with a GI Consultant, this was confirmed.
So I'm sat at my computer now drinking a cup of tea trying to work out exactly how I feel. I think I have been through every emotion since this morning - shock, relief, worry, anger, fear, smug. And then I realise how mad that sounds - relief that I have a lifelong illness that can never be cured. But then I think about the last 10 years and what I have been through and I don't blame myself for feeling that. I have lost count of how many times I have cried or felt like giving up, how many times I have wanted to slap people across the face when they say something like "oh, so you just have a bad stomach now and again?" I have had the most frustrating and exhausting battle for so long and now I feel like it is finally over and I can focus on getting better. I know there is still a long road ahead and I have already been told I have to have another colonoscopy to discover the extent of the damage caused by the inflammation. I am possibly facing surgery to resect my bowel and I will probably be on some horrid medication for the rest of my life but if these things give me my quality of life back, then bring them on!
I'm sorry this is SUCH a long post but all I really want to say is I only got here through trusting my instincts, fighting for what I knew all along and not being afraid to demand what I am entitled to from the medical professionals treating me. It's a hard fight and you may get palmed off more times than you can even remember, but don't ever stop fighting to get your life back. Crohn's Disease isn't a life sentence and for the first time in 10 years, I actually feel hopeful.
I look forward to getting to know you all and hearing all of your experiences
Sarah x
