Dear forum members & Crohns experts,
I am 50 years old and have been struggling increasingly with stomach problems for the past 4/5 years. I am currently under supervision of a GI specialist but undiagnosed and frustrated and would so appreciate your input. I have suffered from diarrhea and stomach pain for as long as I can remember as I am allergic to certain foods (also asthmatic).
Roughly 4 years ago I was ill for several days with very severe stomach pain to the right of my naval, diarrhea, nausea, headache and generally feeling unwell. My GP sent me to hospital, suspecting appendicitis. A CT later showed an ‘inflamed ileium’ and blood tests showed elevated white count (infection). As my father has Colitis, I was told further tests were necessary. Blood and faeces tests showed infection (elevated calprotectin) but MRI with contrast fluid and colonoscopy were negative.
Incidentally, 6 years ago I was diagnosed with sicca syndrome (dry eyes) as I had recurring eye infections. I also have a long history of joint pain and for several years was on corticosteroids (early 30’s).
Since then, I have almost daily pain to the right of my naval, sometimes just a dull burning pain and I have regular bouts of what I thought was a virus: I would wake up with red, infected eyes, nausea, diarrhea, headache, feeling unwell, very tired and it would last for up to a week. It seemed crazy that I kept on getting the same virus so the GP did blood tests: no spectacular results but clearly evidence of infection somewhere. I do lose weight during these episodes but it is hardly noticeable as I have always been overweight and put it back on quickly! I have to add that during these bouts, I feel achey and often have night sweats.
I was sent to the GI specialist this January and whilst blood and faeces were again positive, again the colonoscopy and MRI were negative. Shortly hereafter, I was prescribed Prednison by the GP for a bad bout of (allergic) bronchitis and my stomach issues cleared up temporarily.
I didn’t go back to the GI specialist as I assumed it was the end of the road. What I was not told was that he had written to my GP that despite negative colonoscopies, he suspects ‘ileitis or vasculitis’.
Then in August I vacationed in Africa and came down with what I thought was Gastroenteritis but simply didn’t clear up. I then had ok weeks and then weeks followed by the ‘virus’. Early November whilst again abroad, I had the same terrible pain, diarrhea, nausea, very tired all the time and was pretty sure my ileum was again inflamed. On return, GP did faeces and blood tests (both positive) and I was given Prednison as I was so unwell and was losing weight. I reacted amazingly positively to the Prednison and was sent back to the GI specialist.
Reviewing all the facts, he has agreed that I again undergo blood and feaces tests even though I am not having significant symptoms right now. I did go out to a dinner last night and have been up regularly throughout the night with diarrhea and nausea and have pain again on the right side, but I always relate this to simply have eaten too much. If the results are negative, then I wait until I have symptoms again and then redo the tests. He has given me a prescription for budesonide (Entocort) and told me to start taking them immediately when I have symptoms. He stated very clearly that whilst the scopes/MRI were clear, he takes my problems seriously .
Despite this, I note I am becoming anxious that I will continuously remain in an undiagnosed cycle and whilst nobody wants Crohn’s disease, being so often unwell and tired without adequate treatment, is really no fun.
What if my colonoscopies continue to be negative – does this mean I will never get a diagnosis or can they do it on bloods and faeces alone?
I would very much appreciate your views and ‘expert’ opinions and thank you very much in advance!
I am 50 years old and have been struggling increasingly with stomach problems for the past 4/5 years. I am currently under supervision of a GI specialist but undiagnosed and frustrated and would so appreciate your input. I have suffered from diarrhea and stomach pain for as long as I can remember as I am allergic to certain foods (also asthmatic).
Roughly 4 years ago I was ill for several days with very severe stomach pain to the right of my naval, diarrhea, nausea, headache and generally feeling unwell. My GP sent me to hospital, suspecting appendicitis. A CT later showed an ‘inflamed ileium’ and blood tests showed elevated white count (infection). As my father has Colitis, I was told further tests were necessary. Blood and faeces tests showed infection (elevated calprotectin) but MRI with contrast fluid and colonoscopy were negative.
Incidentally, 6 years ago I was diagnosed with sicca syndrome (dry eyes) as I had recurring eye infections. I also have a long history of joint pain and for several years was on corticosteroids (early 30’s).
Since then, I have almost daily pain to the right of my naval, sometimes just a dull burning pain and I have regular bouts of what I thought was a virus: I would wake up with red, infected eyes, nausea, diarrhea, headache, feeling unwell, very tired and it would last for up to a week. It seemed crazy that I kept on getting the same virus so the GP did blood tests: no spectacular results but clearly evidence of infection somewhere. I do lose weight during these episodes but it is hardly noticeable as I have always been overweight and put it back on quickly! I have to add that during these bouts, I feel achey and often have night sweats.
I was sent to the GI specialist this January and whilst blood and faeces were again positive, again the colonoscopy and MRI were negative. Shortly hereafter, I was prescribed Prednison by the GP for a bad bout of (allergic) bronchitis and my stomach issues cleared up temporarily.
I didn’t go back to the GI specialist as I assumed it was the end of the road. What I was not told was that he had written to my GP that despite negative colonoscopies, he suspects ‘ileitis or vasculitis’.
Then in August I vacationed in Africa and came down with what I thought was Gastroenteritis but simply didn’t clear up. I then had ok weeks and then weeks followed by the ‘virus’. Early November whilst again abroad, I had the same terrible pain, diarrhea, nausea, very tired all the time and was pretty sure my ileum was again inflamed. On return, GP did faeces and blood tests (both positive) and I was given Prednison as I was so unwell and was losing weight. I reacted amazingly positively to the Prednison and was sent back to the GI specialist.
Reviewing all the facts, he has agreed that I again undergo blood and feaces tests even though I am not having significant symptoms right now. I did go out to a dinner last night and have been up regularly throughout the night with diarrhea and nausea and have pain again on the right side, but I always relate this to simply have eaten too much. If the results are negative, then I wait until I have symptoms again and then redo the tests. He has given me a prescription for budesonide (Entocort) and told me to start taking them immediately when I have symptoms. He stated very clearly that whilst the scopes/MRI were clear, he takes my problems seriously .
Despite this, I note I am becoming anxious that I will continuously remain in an undiagnosed cycle and whilst nobody wants Crohn’s disease, being so often unwell and tired without adequate treatment, is really no fun.
What if my colonoscopies continue to be negative – does this mean I will never get a diagnosis or can they do it on bloods and faeces alone?
I would very much appreciate your views and ‘expert’ opinions and thank you very much in advance!
