- Joined
- Dec 17, 2011
- Messages
- 4
Hi there, I'm Lesley and I come from New Zealand.
On Monday my immunologist broke the news that the Faecal Calprotectin test he ordered came back positive, showing I have an IBD. Not the 40th birthday present I wanted.
This has happened after 26 years of being told I had an 'undiagnosed immune related inflammatory illness' that involved 5 occurences of year-long flares with high ESR and CRP levels, fevers, gut pain, diarrhea, reactive arthritis and fatigue. It has affected every aspect of my life. During these flares I had; multiple scans, laparoscopic gyny surgery, barium tests, a colonoscopy, a gastroscopy to find the source of the inflammation - to no avail.
In 1985 I first became really ill and had a month in hospital while they monitored my raised ESR and tested me for all sorts of things. I remember the fevers, fatigue and joint pain being the main reason I was admitted, but while I got frequent diarrhea as a kid I can't remember that being factored in.
I'd had two kids by the time I was 21 and had a very stressful marriage, and I spent a lot of time feeling unwell, and came to the conclusion I was a 'sickly person'. The 90's were a mix of illness and stress for me as my marriage dissolved and I took a long time to get back on my feet. I was told the gastric symptoms were due to anxiety and stress. I had barium tests, gallbladder tests, and they were all negative.
In 2003, after relocating to a new city and starting in a new job I got really ill. I had fatigue, nausea, anaemia, joint pain, my CRP and ESR hit the roof, and I couldn't even make it to work. Again, the gastric symptoms seemed to take second place behind the abnormal blood work results that kept coming up. Then, as suddenly as it appeared, I recovered.
In 2006, I had the worst bout ever, and it eventually led to the loss of my job. I saw an immunologist, who put me on a mega dose of steroids and sent me first to a Rheumatologist, to rule out Rheumatoid Arthritis, Lupus etc. That doctor felt I could have Fibromyalgia, but that that wouldn't explain the blood test results. Finally he gave up and the gastric symptoms saw me next sent to see a Gastroenterologist who gave me a colonoscopy and gastroscopy and when nothing was found he referred me to a Gynaecologist who tested me for PCOS and PID and I had a laparoscopy that found I had a little bit of endometriosis, which was then removed. After a year of prednisone and a 30kg (60lb) weight gain I started to improve again.
I had a couple of emergency stays in hospital in 2008 when I suddenly had the most uncontrollable explosive diarrhea and vomiting you could imagine, and horrendous pain. I ended up on a drip and was completely out to it as my body did its thing for about 12 hours and then it subsided. Both times they kept me in isolation for days but the test results showed no signs of a virus (even though they were certain I had some kind of stomach bug).
At work, I had used up all possible sick-leave and my manager was horrible to me because of my previous absenteeism. Finally, in 2009 when I had a fall and needed spinal surgery they pulled the plug on my job. I then spent the next 2 years unemployed and had a discectomy and then a spinal fusion followed up with a rehab programme.
It was an awful year in 2009. I broke my back and lost my job, my boyfriend of 9 years left me because he couldn't handle me being constantly ill so when I broke my back it was the last straw for him. It was a really hard year to cope with. I never thought I would be in a relationship again but after 6 months of being single I met the most wonderful man in the world. It was rough to have been through all of that to have met Chris, but in a way it was worth it! FYI we get married on 6 January 2012!
I got another job early in 2011 but from April this year my mystery illness has been back with a vengeance and I couldn't cope with working full time. I was found to be terribly anaemic and have been having palpitations and been into hospital twice for ECG's. I had to wait 6 months to see the immunologist again (there is only one here in Wellington), and in the meanwhile, on the recommendation of my GP I went on the FODMAP diet to help my 'IBS symptoms'.
My gut has been BAD, and so the first thing the Immunologist did was to repeat all the bloodwork and do a Faecal Calprotectin test. Apparently this test is very new and very accurate. My results came back on Monday and my CRP and ESR are very high, I am anaemic, vitamin deficient in lots of ways, but most of all my Calprotectin results show a VERY high level of inflammation in the bowel. He said this test is really accurate. He said it could mean one of three things, Crohn's, UC or cancer. We both agreed that it wouldn't be cancer or I'd have been dead a long time ago!
I feel furious. I am so angry it has taken this long, and this new test to work out that something is going on in my gut.
It seems unfair that I heard this news two weeks before xmas and my 40th birthday (the very same day) and four weeks before I marry the man of my dreams. Now I have to wait until mid-January (the day I get back from honeymoon) to see the Gastro specialist yet again and have a Capsule Endoscopy booked. All wedding thoughts have been superseded by health worries.
I don't know what to expect really. I know in my heart that it's going to be Crohn's or UC. I don't know what to hope for. I feel sorry for my fiancee and can't imagine what he thinks he's getting himself into. Our kids have all grown and left home and we wanted the coming years to be about adventure and travel and fun. Not being confined to being near the toilet and constant visits to doctors!
Any advice you guys have for how to handle the coming weeks and what to ask the specialist I see on the 16th of January would be gratefully received. Also, how good is this Calprotection test? What should I expect to happen next? What should I do?
Arohanui,
Lesley
On Monday my immunologist broke the news that the Faecal Calprotectin test he ordered came back positive, showing I have an IBD. Not the 40th birthday present I wanted.
This has happened after 26 years of being told I had an 'undiagnosed immune related inflammatory illness' that involved 5 occurences of year-long flares with high ESR and CRP levels, fevers, gut pain, diarrhea, reactive arthritis and fatigue. It has affected every aspect of my life. During these flares I had; multiple scans, laparoscopic gyny surgery, barium tests, a colonoscopy, a gastroscopy to find the source of the inflammation - to no avail.
In 1985 I first became really ill and had a month in hospital while they monitored my raised ESR and tested me for all sorts of things. I remember the fevers, fatigue and joint pain being the main reason I was admitted, but while I got frequent diarrhea as a kid I can't remember that being factored in.
I'd had two kids by the time I was 21 and had a very stressful marriage, and I spent a lot of time feeling unwell, and came to the conclusion I was a 'sickly person'. The 90's were a mix of illness and stress for me as my marriage dissolved and I took a long time to get back on my feet. I was told the gastric symptoms were due to anxiety and stress. I had barium tests, gallbladder tests, and they were all negative.
In 2003, after relocating to a new city and starting in a new job I got really ill. I had fatigue, nausea, anaemia, joint pain, my CRP and ESR hit the roof, and I couldn't even make it to work. Again, the gastric symptoms seemed to take second place behind the abnormal blood work results that kept coming up. Then, as suddenly as it appeared, I recovered.
In 2006, I had the worst bout ever, and it eventually led to the loss of my job. I saw an immunologist, who put me on a mega dose of steroids and sent me first to a Rheumatologist, to rule out Rheumatoid Arthritis, Lupus etc. That doctor felt I could have Fibromyalgia, but that that wouldn't explain the blood test results. Finally he gave up and the gastric symptoms saw me next sent to see a Gastroenterologist who gave me a colonoscopy and gastroscopy and when nothing was found he referred me to a Gynaecologist who tested me for PCOS and PID and I had a laparoscopy that found I had a little bit of endometriosis, which was then removed. After a year of prednisone and a 30kg (60lb) weight gain I started to improve again.
I had a couple of emergency stays in hospital in 2008 when I suddenly had the most uncontrollable explosive diarrhea and vomiting you could imagine, and horrendous pain. I ended up on a drip and was completely out to it as my body did its thing for about 12 hours and then it subsided. Both times they kept me in isolation for days but the test results showed no signs of a virus (even though they were certain I had some kind of stomach bug).
At work, I had used up all possible sick-leave and my manager was horrible to me because of my previous absenteeism. Finally, in 2009 when I had a fall and needed spinal surgery they pulled the plug on my job. I then spent the next 2 years unemployed and had a discectomy and then a spinal fusion followed up with a rehab programme.
It was an awful year in 2009. I broke my back and lost my job, my boyfriend of 9 years left me because he couldn't handle me being constantly ill so when I broke my back it was the last straw for him. It was a really hard year to cope with. I never thought I would be in a relationship again but after 6 months of being single I met the most wonderful man in the world. It was rough to have been through all of that to have met Chris, but in a way it was worth it! FYI we get married on 6 January 2012!
I got another job early in 2011 but from April this year my mystery illness has been back with a vengeance and I couldn't cope with working full time. I was found to be terribly anaemic and have been having palpitations and been into hospital twice for ECG's. I had to wait 6 months to see the immunologist again (there is only one here in Wellington), and in the meanwhile, on the recommendation of my GP I went on the FODMAP diet to help my 'IBS symptoms'.
My gut has been BAD, and so the first thing the Immunologist did was to repeat all the bloodwork and do a Faecal Calprotectin test. Apparently this test is very new and very accurate. My results came back on Monday and my CRP and ESR are very high, I am anaemic, vitamin deficient in lots of ways, but most of all my Calprotectin results show a VERY high level of inflammation in the bowel. He said this test is really accurate. He said it could mean one of three things, Crohn's, UC or cancer. We both agreed that it wouldn't be cancer or I'd have been dead a long time ago!
I feel furious. I am so angry it has taken this long, and this new test to work out that something is going on in my gut.
It seems unfair that I heard this news two weeks before xmas and my 40th birthday (the very same day) and four weeks before I marry the man of my dreams. Now I have to wait until mid-January (the day I get back from honeymoon) to see the Gastro specialist yet again and have a Capsule Endoscopy booked. All wedding thoughts have been superseded by health worries.
I don't know what to expect really. I know in my heart that it's going to be Crohn's or UC. I don't know what to hope for. I feel sorry for my fiancee and can't imagine what he thinks he's getting himself into. Our kids have all grown and left home and we wanted the coming years to be about adventure and travel and fun. Not being confined to being near the toilet and constant visits to doctors!
Any advice you guys have for how to handle the coming weeks and what to ask the specialist I see on the 16th of January would be gratefully received. Also, how good is this Calprotection test? What should I expect to happen next? What should I do?
Arohanui,
Lesley
