I have been reading through the forums for the past week or so, and I now realise how lucky I have been to get such a quick diagnosis… Here goes, I tried to keep it shortish, and I’ve missed bits out, but its still a bit long winded.. sorry
I’m a 45yr old mother of 4 and about 16 months ago I had on and off severe abdominal pain, sickness and diarrhoea, headaches, shivers/sweats and I was very anaemic, I had a scan which was clear, an endoscopy which showed a hiatus hernia, gastritis and H-pylori, and a colonoscopy which was clear. I was given iron medicine, omeprazole and treated with antibiotics for the H-pylori, I felt fine for ages so put it all down to that… Fast forward about 8 months and the stomach pains returned 10 fold, I felt so drained and tired I would often just lie on the floor, the diarrhoea got really bad, but would quickly switch to severe constipation, I went back to the Dr who asked about food habits etc, I told him I couldn’t connect any of it with food it varied, some days I was fine some I wasn’t, they did more blood tests, it showed some inflammation, and I was anaemic. He gave me some lansoprazole to try, 2 weeks later I again felt so ill and weak and the pain in my stomach was unbearable so I went back to the Drs, this time it was a locum Dr, had more blood done, he sent me for a scan, I was given buscopan and codeine for the pain, over the next couple of weeks the scan came back all clear, and I repeated various blood test, still not feeling great I went back to the drs, he felt my stomach and was worried he could feel an abdominal mass on my right side, he said I was still anaemic, my CRP results were very high and fluctuating, apparently they had been 45, 80, 180, then 100, he was really concerned and said he wanted to to a CA125 (I think) test, that came back at 75, He told me with the high inflammation markers & the abdominal mass he was worried I might have ovarian cancer (or some other nastiness) I had an appointment to see the consultant gynaecologist at the hospital in days, after being poked and prodded & having another scan, he said he could feel the mass but thought it was bowel not gyny but would send me for a CT scan to make sure, this showed a tubular structure and fluid(whatever that means) and in the letter to the Dr he said he thought it was possibly to do with Crohns disease and recommend the Dr send me to a gastro consultant, about 4 weeks later I see the gastro guy, he said he’d looked at the CT scan and yes he was pretty sure it was crohns, I said could it not be something else, to which he said, "until we have the biopsies nothing is 100% but I’m pretty sure it’s nothing else", he started me on budesonide and said I’d get an appointment for a colonoscopy, I said about the last one being clear and he told me if they had gone right round to the terminal ilieum the last time, he doubted very much it would’ve come back clear, about 4 weeks later I had the colonoscopy, they couldn’t get to the terminal ileum cos I had a lipoma, but took biopsies of various bits, saw the consultant again about 10 days later, I was a bit upset that I’d had to have another colonoscopy and they couldn’t get where they needed to because of the lipoma, but he said it didn’t matter, the biopsies showed crohns in other areas, and showed me a picture of some lumpy bits which he said were granulomas, apart from constantly feeling nauseous and moderate stomach pains I wasn’t feeling so bad, but he swapped the budesonide for prednisolone, and said next time I saw him, (in 2 months) he would put me on Humira, Now all this is a little bit surreal for me at the minute, I have tried to read stuff, but if I’m honest for the most part I try and ignore it.. ( I know Im going to have to face up to it at some point) I have only told close family and the odd friend, oh and work.. I just don’t feel ready to share it with the world :/ reading other peoples post I feel like a bit of a fraud, I don’t feel anywhere near as bad as some of you describe and I have never had any bleeding, if I’m honest reading it fills me with horror. The consultant said I have probably had it for quite a while but because I play things down, I’ve probably normalised it, and thinking about it I think he’s right, I haven’t felt amazingly well for a long long time, and over the last 6 months or so everything has become a massive effort, when I thought of crohns I always thought of stomach problems, I hadn’t realised that fatigue, aches etc are all part of it.. Looking back over last 16 months at least there are quite a lot of things that knowing the little bit I know about Cohn’s now I would link together but at the time just thought of them all as separate things, and on a few occassions when it was really bad, (severe aches, stomach pain, sickness, diarrhoea, head feeling like it was going to explode, shivers sweats) I probably should’ve gone to A&E, but at the time felt too ill to move, and I’m also a bit of a “oh I’ll be ok in a day or so” type of person, so that’s me
its been interesting reading other peoples post and the different ways it effects people.. thanks for taking the time to read this.
I’m a 45yr old mother of 4 and about 16 months ago I had on and off severe abdominal pain, sickness and diarrhoea, headaches, shivers/sweats and I was very anaemic, I had a scan which was clear, an endoscopy which showed a hiatus hernia, gastritis and H-pylori, and a colonoscopy which was clear. I was given iron medicine, omeprazole and treated with antibiotics for the H-pylori, I felt fine for ages so put it all down to that… Fast forward about 8 months and the stomach pains returned 10 fold, I felt so drained and tired I would often just lie on the floor, the diarrhoea got really bad, but would quickly switch to severe constipation, I went back to the Dr who asked about food habits etc, I told him I couldn’t connect any of it with food it varied, some days I was fine some I wasn’t, they did more blood tests, it showed some inflammation, and I was anaemic. He gave me some lansoprazole to try, 2 weeks later I again felt so ill and weak and the pain in my stomach was unbearable so I went back to the Drs, this time it was a locum Dr, had more blood done, he sent me for a scan, I was given buscopan and codeine for the pain, over the next couple of weeks the scan came back all clear, and I repeated various blood test, still not feeling great I went back to the drs, he felt my stomach and was worried he could feel an abdominal mass on my right side, he said I was still anaemic, my CRP results were very high and fluctuating, apparently they had been 45, 80, 180, then 100, he was really concerned and said he wanted to to a CA125 (I think) test, that came back at 75, He told me with the high inflammation markers & the abdominal mass he was worried I might have ovarian cancer (or some other nastiness) I had an appointment to see the consultant gynaecologist at the hospital in days, after being poked and prodded & having another scan, he said he could feel the mass but thought it was bowel not gyny but would send me for a CT scan to make sure, this showed a tubular structure and fluid(whatever that means) and in the letter to the Dr he said he thought it was possibly to do with Crohns disease and recommend the Dr send me to a gastro consultant, about 4 weeks later I see the gastro guy, he said he’d looked at the CT scan and yes he was pretty sure it was crohns, I said could it not be something else, to which he said, "until we have the biopsies nothing is 100% but I’m pretty sure it’s nothing else", he started me on budesonide and said I’d get an appointment for a colonoscopy, I said about the last one being clear and he told me if they had gone right round to the terminal ilieum the last time, he doubted very much it would’ve come back clear, about 4 weeks later I had the colonoscopy, they couldn’t get to the terminal ileum cos I had a lipoma, but took biopsies of various bits, saw the consultant again about 10 days later, I was a bit upset that I’d had to have another colonoscopy and they couldn’t get where they needed to because of the lipoma, but he said it didn’t matter, the biopsies showed crohns in other areas, and showed me a picture of some lumpy bits which he said were granulomas, apart from constantly feeling nauseous and moderate stomach pains I wasn’t feeling so bad, but he swapped the budesonide for prednisolone, and said next time I saw him, (in 2 months) he would put me on Humira, Now all this is a little bit surreal for me at the minute, I have tried to read stuff, but if I’m honest for the most part I try and ignore it.. ( I know Im going to have to face up to it at some point) I have only told close family and the odd friend, oh and work.. I just don’t feel ready to share it with the world :/ reading other peoples post I feel like a bit of a fraud, I don’t feel anywhere near as bad as some of you describe and I have never had any bleeding, if I’m honest reading it fills me with horror. The consultant said I have probably had it for quite a while but because I play things down, I’ve probably normalised it, and thinking about it I think he’s right, I haven’t felt amazingly well for a long long time, and over the last 6 months or so everything has become a massive effort, when I thought of crohns I always thought of stomach problems, I hadn’t realised that fatigue, aches etc are all part of it.. Looking back over last 16 months at least there are quite a lot of things that knowing the little bit I know about Cohn’s now I would link together but at the time just thought of them all as separate things, and on a few occassions when it was really bad, (severe aches, stomach pain, sickness, diarrhoea, head feeling like it was going to explode, shivers sweats) I probably should’ve gone to A&E, but at the time felt too ill to move, and I’m also a bit of a “oh I’ll be ok in a day or so” type of person, so that’s me
its been interesting reading other peoples post and the different ways it effects people.. thanks for taking the time to read this.
