Hi all,
I am 28 years old and am a nursing student. I have suffered with tummy problems since the age of about 16. After being diagnosed with gastroenteritis about 100 times I questioned the GP who then said, 'Wow, this isn't right.'
Fast forward a few years. GP is adamant I have IBD (didn't specify which) One day in a severe 'flare' attend GP's and she admits me straight away, saying it wasn't right to keep waiting. The gastro consultant saw me pressed my tummy a few times. Advised me I had IBS and discharged me. GP was furious are expedited a further letter advising she wanted me seen. Gastro saw me again, another examination, IBS.
GP complained again finally did a flexi biopsy confirmed coeliac disease. At last I thought I was 'cured'. This diagnosis came in 2007 and I still have a nightmare.
I have since changed address so am now in a different health board but again this GP is adamant it's IBD.
basic symptoms :
> Numerous blood tests are taken and EVERY test shows raised CRP
> Low in iron so iron induced anaemia. Had 8 weeks of transfusions and iron continuously drops despite medication
> Low vitamin B & D
Flare symptoms :
>Excrutiating pain in lower tummy which makes me vomit
> Sweat literally dripping of my head but I shiver with cold
> diarhoea where I'm normally on the toilet for up to 5 hours
> Blood on the toilet paper (usually bright red which doesn't concern me but have had clots on three occasions)
> severe pain in rectum
My GP is so certain it is crohns they prescribe pred which works a treat. I have also been given colifoam in the past. My most recent flare up started on August 29th by 2nd September I was in tears because the pain was unbearable. To the point if someone had said to me then we can take this pain away but that will mean you die I would have happily accepted ~ that is the extent of this pain.
My consultant gastro however insists it is IBS. Now don't get me wrong I have IBS I think we al do to some extent mainly due to diet, time etc. however, I had a colonoscopy done which did come back negative however I had been on pred for a number of weeks/months and wasn't in flare. The Gastro cannot answer why I respond to steroids and when I went for my colonoscopy failed to include in the referral that I had PR bleeding.
On another occasion he said if a stool sample showed calprotectin he would confirm. He then said 'oh these results show raised calprotectin.' Well I'm gonna do another and not diagnose you. That was the last time I saw him.
I recently stopped my pred. From the flare I lost 13lb in 4 days but feel better now. By no means perfect and on daily slow release tramadol, loperamide, peppermint capsules and mebeverine but at least I can function.
I am currently working in endoscopy and after seeking advise each specialist said they would have confirmed crohns by now. The difficulty I face is my GP wants me to apply for out of area funding. If I put is letter in the consultant will be made aware I am asking for a second opinion and I wil be working with this consultant over the next few weeks, (a downside to being a health professional and also the reason I refuse to go to A&E when in flare as these are likely to be my colleagues at some point) Further to the raised CRP etc I have also developed sinus tachycardia (basically a very fast heart rate) My resting hear rate is about 136,it was picked up by chance on the wards then by my haematologist. I have just had to have a week ECG recording and had an echo. I am awaiting the results but my cardiologist was certain it was secondary sinus tachy meaning it was being caused by something else. He specifically stated a stomach problem etc could be causing this.
As I am sure you understand aside from all the issues I envy the possibility of being trialled on medication to place me in remission. I don't want to waste the health authorities time and money for something that is IBS. My GP is convinced it's IBD hence supporting my application I would just like to know your thoughts on my information above before deciding whether to seek a second opinion or whether to admit defeat.
Thank you in advance x:ghug:oo::sign0085:
I am 28 years old and am a nursing student. I have suffered with tummy problems since the age of about 16. After being diagnosed with gastroenteritis about 100 times I questioned the GP who then said, 'Wow, this isn't right.'
Fast forward a few years. GP is adamant I have IBD (didn't specify which) One day in a severe 'flare' attend GP's and she admits me straight away, saying it wasn't right to keep waiting. The gastro consultant saw me pressed my tummy a few times. Advised me I had IBS and discharged me. GP was furious are expedited a further letter advising she wanted me seen. Gastro saw me again, another examination, IBS.
GP complained again finally did a flexi biopsy confirmed coeliac disease. At last I thought I was 'cured'. This diagnosis came in 2007 and I still have a nightmare.
I have since changed address so am now in a different health board but again this GP is adamant it's IBD.
basic symptoms :
> Numerous blood tests are taken and EVERY test shows raised CRP
> Low in iron so iron induced anaemia. Had 8 weeks of transfusions and iron continuously drops despite medication
> Low vitamin B & D
Flare symptoms :
>Excrutiating pain in lower tummy which makes me vomit
> Sweat literally dripping of my head but I shiver with cold
> diarhoea where I'm normally on the toilet for up to 5 hours
> Blood on the toilet paper (usually bright red which doesn't concern me but have had clots on three occasions)
> severe pain in rectum
My GP is so certain it is crohns they prescribe pred which works a treat. I have also been given colifoam in the past. My most recent flare up started on August 29th by 2nd September I was in tears because the pain was unbearable. To the point if someone had said to me then we can take this pain away but that will mean you die I would have happily accepted ~ that is the extent of this pain.
My consultant gastro however insists it is IBS. Now don't get me wrong I have IBS I think we al do to some extent mainly due to diet, time etc. however, I had a colonoscopy done which did come back negative however I had been on pred for a number of weeks/months and wasn't in flare. The Gastro cannot answer why I respond to steroids and when I went for my colonoscopy failed to include in the referral that I had PR bleeding.
On another occasion he said if a stool sample showed calprotectin he would confirm. He then said 'oh these results show raised calprotectin.' Well I'm gonna do another and not diagnose you. That was the last time I saw him.
I recently stopped my pred. From the flare I lost 13lb in 4 days but feel better now. By no means perfect and on daily slow release tramadol, loperamide, peppermint capsules and mebeverine but at least I can function.
I am currently working in endoscopy and after seeking advise each specialist said they would have confirmed crohns by now. The difficulty I face is my GP wants me to apply for out of area funding. If I put is letter in the consultant will be made aware I am asking for a second opinion and I wil be working with this consultant over the next few weeks, (a downside to being a health professional and also the reason I refuse to go to A&E when in flare as these are likely to be my colleagues at some point) Further to the raised CRP etc I have also developed sinus tachycardia (basically a very fast heart rate) My resting hear rate is about 136,it was picked up by chance on the wards then by my haematologist. I have just had to have a week ECG recording and had an echo. I am awaiting the results but my cardiologist was certain it was secondary sinus tachy meaning it was being caused by something else. He specifically stated a stomach problem etc could be causing this.
As I am sure you understand aside from all the issues I envy the possibility of being trialled on medication to place me in remission. I don't want to waste the health authorities time and money for something that is IBS. My GP is convinced it's IBD hence supporting my application I would just like to know your thoughts on my information above before deciding whether to seek a second opinion or whether to admit defeat.
Thank you in advance x:ghug:oo::sign0085: