Hi everyone. Firstly, gonna ask you all to bear with me as this is going to be a long post. It's about the last 10 years of my life and really not knowing where I should go from here. So thank you all in advance for any advice.
I am a 26 year old female who began having 'typical' IBS symptoms at around age 16. It was mainly sporadic bouts of diarrhoea and at the time, I was sitting exams so put it down to stress. At that point, I wouldn't say the flares had any major impact on my day to day life, just a minor annoyance sometimes. Fast forward, as I embarked on my 3 year university degree, I did notice an increase in symptoms (abdominal pain and diarrhoea) to the point where I was popping above the recommended dose of Loperamide tablets each day in order to be able to attend lectures regularly. I think it was probably around my final year of university where I noticed that fatigue was starting to have quite an impact on me and I was struggling to attend a lot of the time because I was just too exhausted. It may have been around this time I was referred to the hospital by my GP after I ended up in A&E one morning after suffering 12 hours straight of constant diarrhoea and agonising pain. Not a lot came of that admission to the hospital, I think they just ruled out some stuff like my appendix and ovarian cysts and discharged me. GP said it was IBS and for the next couple of years I tried every medication and diet modification out there but my symptoms never improved, just seemed to progress.
I moved to a new city after university and in the last year and a half, have been referred to a GI Consultant at the hospital. Upon meeting her, she was absolutely convinced I was suffering from Crohn's Disease in my small intestine. She ordered the following tests and these are the results/outcomes:
MRI - showed apparent thickening in my Terminal Ileum and at the ileocecal valve.
Faecal Calprotectin (test 1) - Showed inflammation levels of 250
Colonoscopy of large bowel - Normal presentation and normal biopsies (scope was unable to reach into my Terminal Ileum)
Faecal Calprotectin (test 2 - after a course of Budesonide) - Showed inflammation levels of 75
Capsule Endoscopy (while on course of Budesonide) - Normal small bowel presentation, but did find severe erosive gastritis in stomach and first part of large intestine
White blood cell scan (completed around 2 weeks after finishing course of Budesonide) - normal presentation
Faecal Calprotectin (test 3 - at same time as white blood cell scan) - Showed inflammation levels of 29
I see my Consultant again on the 26th May and I am so terrified she is going to discharge me with a diagnosis of IBS. At every previous appointment I have had with her, she has said herself she is 99.9% sure I have Crohn's disease but just needed visualisation of the disease before she could give me a firm diagnosis. In light of my recent tests, I don't think this is going to happen now. I don't know how to explain the thickening shown on the MRI, but I suffer with chronic lower right quadrant pain. I have a strong family history of IBD (grandparents on both sides and cousins). I suffer from debilitating fatigue, joint pain (particularly in my knees, making it difficult to be mobile at times), recurrent mouth ulcers, chronic and nocturnal diarrhoea, severe lower abdominal cramping, night sweats, mucus in my stools, blood when passing stools, haemorrhoids, nausea, loss of appetite and some weight loss (not drastic), as well as a Vitamin D deficiency.
Has anyone else had a similar experience and can advise where I can go from here? I don't want to let my Consultant discharge me without her explaining previous things she has said as well as earlier test results (the MRI and my initial faecal calprotectin). I am currently out of work, I have lost 3 jobs due to this and I couldn't even entertain the idea of returning to work with the way I feel day to day.
Thank you all for reading, sorry about it being such a long post! x
I am a 26 year old female who began having 'typical' IBS symptoms at around age 16. It was mainly sporadic bouts of diarrhoea and at the time, I was sitting exams so put it down to stress. At that point, I wouldn't say the flares had any major impact on my day to day life, just a minor annoyance sometimes. Fast forward, as I embarked on my 3 year university degree, I did notice an increase in symptoms (abdominal pain and diarrhoea) to the point where I was popping above the recommended dose of Loperamide tablets each day in order to be able to attend lectures regularly. I think it was probably around my final year of university where I noticed that fatigue was starting to have quite an impact on me and I was struggling to attend a lot of the time because I was just too exhausted. It may have been around this time I was referred to the hospital by my GP after I ended up in A&E one morning after suffering 12 hours straight of constant diarrhoea and agonising pain. Not a lot came of that admission to the hospital, I think they just ruled out some stuff like my appendix and ovarian cysts and discharged me. GP said it was IBS and for the next couple of years I tried every medication and diet modification out there but my symptoms never improved, just seemed to progress.
I moved to a new city after university and in the last year and a half, have been referred to a GI Consultant at the hospital. Upon meeting her, she was absolutely convinced I was suffering from Crohn's Disease in my small intestine. She ordered the following tests and these are the results/outcomes:
MRI - showed apparent thickening in my Terminal Ileum and at the ileocecal valve.
Faecal Calprotectin (test 1) - Showed inflammation levels of 250
Colonoscopy of large bowel - Normal presentation and normal biopsies (scope was unable to reach into my Terminal Ileum)
Faecal Calprotectin (test 2 - after a course of Budesonide) - Showed inflammation levels of 75
Capsule Endoscopy (while on course of Budesonide) - Normal small bowel presentation, but did find severe erosive gastritis in stomach and first part of large intestine
White blood cell scan (completed around 2 weeks after finishing course of Budesonide) - normal presentation
Faecal Calprotectin (test 3 - at same time as white blood cell scan) - Showed inflammation levels of 29
I see my Consultant again on the 26th May and I am so terrified she is going to discharge me with a diagnosis of IBS. At every previous appointment I have had with her, she has said herself she is 99.9% sure I have Crohn's disease but just needed visualisation of the disease before she could give me a firm diagnosis. In light of my recent tests, I don't think this is going to happen now. I don't know how to explain the thickening shown on the MRI, but I suffer with chronic lower right quadrant pain. I have a strong family history of IBD (grandparents on both sides and cousins). I suffer from debilitating fatigue, joint pain (particularly in my knees, making it difficult to be mobile at times), recurrent mouth ulcers, chronic and nocturnal diarrhoea, severe lower abdominal cramping, night sweats, mucus in my stools, blood when passing stools, haemorrhoids, nausea, loss of appetite and some weight loss (not drastic), as well as a Vitamin D deficiency.
Has anyone else had a similar experience and can advise where I can go from here? I don't want to let my Consultant discharge me without her explaining previous things she has said as well as earlier test results (the MRI and my initial faecal calprotectin). I am currently out of work, I have lost 3 jobs due to this and I couldn't even entertain the idea of returning to work with the way I feel day to day.
Thank you all for reading, sorry about it being such a long post! x