I've felt I had an inflammatory bowel issue for quite a number of years, I've had colonoscopies in the past which were usually clear or showed some inflammation that was usually attributed to a reaction to the bowel prep.
I suffered from unexplained constipation that I often put down to hormonal changes. Plus regular bouts of diarrhea that would never show anything on culture and would just go away on it's own or after a dose of flagyl in case I had an uncultured giardia.
I even changed my fridge over a few years go thinking it wasn't working well and that I must have been giving myself food poisoning. Didn't make any difference.
I found during periods of high stress I would have bowel issues, always bleeding and pain.
4 years ago I had a colonoscopy that showed both an anterior and posterior fissure, which was really awful. That drama went on for months and months ending up with an abscess and a fistula when the colorectal surgeon finally decide to "humour me" with an investigation under anaesthetic. He had been very dismissive of my issues, even rolling his eyes at me when I told him I thought I had a fistula. It was a horrendous experience culminating with me being discharged after surgery with no idea of what had actually been done as he wasn't contactable and had not documented in my file. He then blamed the nursing staff, that is one Dr I won't go back to again.
My GP asked his input into why I had developed the issues I had, given my theory I had an inflammatory bowel condition LOL. The delight simply said it wasn't his job to diagnose, but his job to fix and it was all left at that with me feeling very disempowered and traumatised by it all.
Then 2 years ago I developed joint pain that lasted 6 months. I had to wait a long time to get into a rheumatologist and initially first saw a hand therapist who was quite convinced that I had Rheumatioid Arthritis. My ANA was slightly positive, CRP and ESR also too. I have a friend who is a physician and he wasn't sure what was going on and convinced me to try a short dose of pnednioslone which I reluctantly agreed to. I took it for just over a week as I started getting a bit over emotional, however it was enough to make my joint pain completely disappear. By the time my appointment came around I had no symptoms at all she ordered an MRI which showed nothing at all, so the joint pain was put down to possible reactive inflammatory arthritis which resolved.
Recently went to a lovely gynaecologist who had a series of questions that revealed the issues I've had over the years and she pushed for a referral to a gastroenterologist to investigate.
I had symptoms when I first went to see her as I had just been made redundant from one of my jobs and within 2 days I had significnat bowel issues. The colonoscopy showed patches of inflammation but she wasn't sure as she felt it was possible that it could have been infective, She told me it could take years to diagnose but she agreed with my feeling that i had some inflammatory bowel issue and said that she wouldn't give up until she had an answer.
A series of tests at varying times have been done to try to piece it all together. My inflammatory markers are high, faecal calprotectin also high, small bowel MRI showed no issues in the small bowel. I'm just experiencing a flare that has lasted close to 2 months now, has really drained me as you would all know. I'm feeling like total crap and now I have what feels like another fissure. My joint pain has also re-appeared after a 2 year disappearance and I have been experiencing mouth ulcers. I have had a low grade fever for most of the time too and night sweats. I also have malnutrition at present, with low protein levels, muscle wasting and a small but significant weight loss.
She is now "very confident" that I have crohns colitis. Initially started me on mezavant 4.8mg/day. My symptoms reduced quite a bit by the end of the second week on it but motions are still not normal. I went back after 2 weeks and my fissure pain is a little better but not quite enough, her opinion is that it won't heal well unless the "crohns" is controlled. She was wanting to start me on imuran but i told her I was going through some denial at present.
She is very nice and understanding and said that she thinks I may have been sick for a long time and that I don't really know what it's like to be well. She proposed trying prednisolone for a few weeks to see how I respond. She said that imuran takes around 3 months to take effect anyway and it was OK to wait until I felt ready. She has also ordered a pelvic MRI in case I have another fistula and not just a fissure.
I'm conflicted in my thoughts about the whole thing, it's my preference not to be on medication however I realise that this is probably unrealistic. However there are people who are in remission and not treated so i'm wondering about the decisional process of how and when medications are instigated or ceased.
I know I'm feeling like crap at present but thought it just might go away on it's own. I've been experiencing a lot of stress the last few years so it doens't surprise me that my body is reflecting this. Have been divorced after being in a horrible marriage nd still not settled in terms of the financial side plus after finally making the move to leave my husband find myself being made redundant and now not well and all alone!
I suffered from unexplained constipation that I often put down to hormonal changes. Plus regular bouts of diarrhea that would never show anything on culture and would just go away on it's own or after a dose of flagyl in case I had an uncultured giardia.
I even changed my fridge over a few years go thinking it wasn't working well and that I must have been giving myself food poisoning. Didn't make any difference.
I found during periods of high stress I would have bowel issues, always bleeding and pain.
4 years ago I had a colonoscopy that showed both an anterior and posterior fissure, which was really awful. That drama went on for months and months ending up with an abscess and a fistula when the colorectal surgeon finally decide to "humour me" with an investigation under anaesthetic. He had been very dismissive of my issues, even rolling his eyes at me when I told him I thought I had a fistula. It was a horrendous experience culminating with me being discharged after surgery with no idea of what had actually been done as he wasn't contactable and had not documented in my file. He then blamed the nursing staff, that is one Dr I won't go back to again.
My GP asked his input into why I had developed the issues I had, given my theory I had an inflammatory bowel condition LOL. The delight simply said it wasn't his job to diagnose, but his job to fix and it was all left at that with me feeling very disempowered and traumatised by it all.
Then 2 years ago I developed joint pain that lasted 6 months. I had to wait a long time to get into a rheumatologist and initially first saw a hand therapist who was quite convinced that I had Rheumatioid Arthritis. My ANA was slightly positive, CRP and ESR also too. I have a friend who is a physician and he wasn't sure what was going on and convinced me to try a short dose of pnednioslone which I reluctantly agreed to. I took it for just over a week as I started getting a bit over emotional, however it was enough to make my joint pain completely disappear. By the time my appointment came around I had no symptoms at all she ordered an MRI which showed nothing at all, so the joint pain was put down to possible reactive inflammatory arthritis which resolved.
Recently went to a lovely gynaecologist who had a series of questions that revealed the issues I've had over the years and she pushed for a referral to a gastroenterologist to investigate.
I had symptoms when I first went to see her as I had just been made redundant from one of my jobs and within 2 days I had significnat bowel issues. The colonoscopy showed patches of inflammation but she wasn't sure as she felt it was possible that it could have been infective, She told me it could take years to diagnose but she agreed with my feeling that i had some inflammatory bowel issue and said that she wouldn't give up until she had an answer.
A series of tests at varying times have been done to try to piece it all together. My inflammatory markers are high, faecal calprotectin also high, small bowel MRI showed no issues in the small bowel. I'm just experiencing a flare that has lasted close to 2 months now, has really drained me as you would all know. I'm feeling like total crap and now I have what feels like another fissure. My joint pain has also re-appeared after a 2 year disappearance and I have been experiencing mouth ulcers. I have had a low grade fever for most of the time too and night sweats. I also have malnutrition at present, with low protein levels, muscle wasting and a small but significant weight loss.
She is now "very confident" that I have crohns colitis. Initially started me on mezavant 4.8mg/day. My symptoms reduced quite a bit by the end of the second week on it but motions are still not normal. I went back after 2 weeks and my fissure pain is a little better but not quite enough, her opinion is that it won't heal well unless the "crohns" is controlled. She was wanting to start me on imuran but i told her I was going through some denial at present.
She is very nice and understanding and said that she thinks I may have been sick for a long time and that I don't really know what it's like to be well. She proposed trying prednisolone for a few weeks to see how I respond. She said that imuran takes around 3 months to take effect anyway and it was OK to wait until I felt ready. She has also ordered a pelvic MRI in case I have another fistula and not just a fissure.
I'm conflicted in my thoughts about the whole thing, it's my preference not to be on medication however I realise that this is probably unrealistic. However there are people who are in remission and not treated so i'm wondering about the decisional process of how and when medications are instigated or ceased.
I know I'm feeling like crap at present but thought it just might go away on it's own. I've been experiencing a lot of stress the last few years so it doens't surprise me that my body is reflecting this. Have been divorced after being in a horrible marriage nd still not settled in terms of the financial side plus after finally making the move to leave my husband find myself being made redundant and now not well and all alone!
