- Joined
- Oct 7, 2012
- Messages
- 479
Hi guys,
I'm new to this forum and was hoping for a bit of advice. I'm 25 and female. I have had a lot of clear results initially but it's the last one I had done I'm worried about and hoping for advice... I'm sorry this is a long post!!
For most of my life (since around 11) I have had episodes of abdominal pain after eating and severe weight loss. However things worsened quite badly around 2007ish and I got referred to a gastroenterologist.
Sept 2008 I had a clear colonoscopy and endoscopy. Marginally raised (and I mean pretty marginally) faecal calprotectin. High ESR. GI discharges me, IBS.
Less than a year later I develop chronic diarrhoea with bleeding and mucus. At first it was about 10 BM's per day, difficult and painful to pass with severe stomach cramping, went back to GI. I then had a flexible sigmoidoscopy which showed internal haemorrhoids, presumed from all the loose stools. GI determines this is where the bleeding is coming from.
At the last minute he decides that the high ESR needs investigating and does an autoimmune panel. It shows high rheumatoid factor and a visit to a rheumatologist later I am diagnosed with sjogren's syndrome. This is an autoimmune disease that normally attacks the moisture producing glands of the body. GI symptoms of this severity are very unusual for sjogren's syndrome, you can get a kind of IBS but as far as I'm aware no inflammatory type of thing. Neither GI nor rheumatologist knows what to do, GI sees me every few months. Repeat clear endoscopy. They try me on hydroxychloroquine for the sjogren's. By this point I also have abnormal liver function, high CK, low WCC, +ve anti-ro, anti-la etc. ESR comes down to normal, liver function near normal.
I struggle on getting worse. I lose 4 stone in weight and start to look very sickly, barely able to eat. Whenever I would eat I would be literally unable to walk or stand up. One day I pretty much collapsed at work and my boss (a doctor) sent me to A&E. They did bloods, urine etc. All normal (as the hydroxychloroquine had 'fixed' the high ESR etc) and discharged me with 2 paracetamol and told me to phone my GI.
I phoned my GI, told him what happened, he saw me for a consultation, decided I looked pretty sick. My stomach was literally covered in bruising as the only way to get any relief from the pain was to pinch my skin which to him indicated the severity of the pain. He found a bed and admitted me to hospital the next day.
I was in for three weeks. I was supposed to have NG/PEG feeding by this point as my weight was dropping stupidly fast but I could not stomach the thought of it and refused. When I was in hospital I was having NO diarrhoea I should note but having severe epigastric pain after eating. Pretty much continuous and through the night. Dihydrocodeine and paracetamol didn't even touch it.
While in hospital I had the following
1) Normal faecal calprotectin
2) CT scan showed fatty liver disease and being 'full of stool' but nothing else
3) Clear MRI thorax for lymphoma
4) Clear capsule endoscopy (without a prep though)
5) Blood test after blood test, only new thing was low complement
The focus was mainly on stabilising my weight which we did not really manage to do. I was told to come off hydroxychloroquine in case that was the cause. It did help, but I was still in pain every day. At this point it was presumed to be psychological (?!) but this has since been disproven after a years evaluation from a psychologist.
THEN... this is the 'interesting' part.
This summer I started to get super sick again. Continuous epigastric pain through the day and through the night. Noctural diarrhoea (which was new) 3 or 4 BM's per night. Completely unable to sleep but no weight loss.
GP does bloods which shows my ESR is the highest it has ever been by quite some way at 51.
As my GI just thinks I'm nuts and discharged me I called my rheumatologist and begged for help. I saw a diff doctor this time who upon telling him my symptoms said 'you might have serositis, we'll try you on steroids'
I go and have a steroid shot and the diarrhoea stopped virtually overnight, enabling me to sleep but the epigastric pain continued. I see my regular rheumatologist who then starts me on the following prednisolone regime
50mg 7 days
40mg 7 days
30mg 7 days
20mg 7 days
15mg 14 days
10/15mg alternate 14 days
then 10mg
I am currently on 15mg.
It has nearly cured everything!!!! I am able to eat full meals without pain but unfortunately am piling on the weight as a consequence :lol: I still have about 1 episode of diarrhoea a month which is very painful but generally over in one BM and controlled easily with one tab of imodium. A huge, huge, huge improvement.
HOWEVER...
They did a faecal caprotectin which was 227 and 'consistent with active GI inflammation'
All my consultant did was send me a copy of the result with NO explanation of the implications and I've not to see him for another 2 months!! And I've not to see my GI for over 6 months! I thought this test was related to crohns/colitis. I don't think it CAN be related to serositis/sjogren's.
I know 227 is not a phenomenally high result (Also it was done 4 days after the steroid shot which may have affected it) but my symptoms are certainly not NEARLY as bad as what I have read on here. I'm not going 40x a day and never have been.
I'm just a bit confused about what this result means considering everything had been clear so far. Bloods since the steroids show my ESR is 2! Yes 2!! and my liver function is great. I have never in my puff had an ESR of 2. Also I no longer have palpable lymph nodes and other telltale signs the inflammation has gone down.
You're a trooper if you've read this far and I really appreciate it!
Any thoughts?
I'm new to this forum and was hoping for a bit of advice. I'm 25 and female. I have had a lot of clear results initially but it's the last one I had done I'm worried about and hoping for advice... I'm sorry this is a long post!!
For most of my life (since around 11) I have had episodes of abdominal pain after eating and severe weight loss. However things worsened quite badly around 2007ish and I got referred to a gastroenterologist.
Sept 2008 I had a clear colonoscopy and endoscopy. Marginally raised (and I mean pretty marginally) faecal calprotectin. High ESR. GI discharges me, IBS.
Less than a year later I develop chronic diarrhoea with bleeding and mucus. At first it was about 10 BM's per day, difficult and painful to pass with severe stomach cramping, went back to GI. I then had a flexible sigmoidoscopy which showed internal haemorrhoids, presumed from all the loose stools. GI determines this is where the bleeding is coming from.
At the last minute he decides that the high ESR needs investigating and does an autoimmune panel. It shows high rheumatoid factor and a visit to a rheumatologist later I am diagnosed with sjogren's syndrome. This is an autoimmune disease that normally attacks the moisture producing glands of the body. GI symptoms of this severity are very unusual for sjogren's syndrome, you can get a kind of IBS but as far as I'm aware no inflammatory type of thing. Neither GI nor rheumatologist knows what to do, GI sees me every few months. Repeat clear endoscopy. They try me on hydroxychloroquine for the sjogren's. By this point I also have abnormal liver function, high CK, low WCC, +ve anti-ro, anti-la etc. ESR comes down to normal, liver function near normal.
I struggle on getting worse. I lose 4 stone in weight and start to look very sickly, barely able to eat. Whenever I would eat I would be literally unable to walk or stand up. One day I pretty much collapsed at work and my boss (a doctor) sent me to A&E. They did bloods, urine etc. All normal (as the hydroxychloroquine had 'fixed' the high ESR etc) and discharged me with 2 paracetamol and told me to phone my GI.
I phoned my GI, told him what happened, he saw me for a consultation, decided I looked pretty sick. My stomach was literally covered in bruising as the only way to get any relief from the pain was to pinch my skin which to him indicated the severity of the pain. He found a bed and admitted me to hospital the next day.
I was in for three weeks. I was supposed to have NG/PEG feeding by this point as my weight was dropping stupidly fast but I could not stomach the thought of it and refused. When I was in hospital I was having NO diarrhoea I should note but having severe epigastric pain after eating. Pretty much continuous and through the night. Dihydrocodeine and paracetamol didn't even touch it.
While in hospital I had the following
1) Normal faecal calprotectin
2) CT scan showed fatty liver disease and being 'full of stool' but nothing else
3) Clear MRI thorax for lymphoma
4) Clear capsule endoscopy (without a prep though)
5) Blood test after blood test, only new thing was low complement
The focus was mainly on stabilising my weight which we did not really manage to do. I was told to come off hydroxychloroquine in case that was the cause. It did help, but I was still in pain every day. At this point it was presumed to be psychological (?!) but this has since been disproven after a years evaluation from a psychologist.
THEN... this is the 'interesting' part.
This summer I started to get super sick again. Continuous epigastric pain through the day and through the night. Noctural diarrhoea (which was new) 3 or 4 BM's per night. Completely unable to sleep but no weight loss.
GP does bloods which shows my ESR is the highest it has ever been by quite some way at 51.
As my GI just thinks I'm nuts and discharged me I called my rheumatologist and begged for help. I saw a diff doctor this time who upon telling him my symptoms said 'you might have serositis, we'll try you on steroids'
I go and have a steroid shot and the diarrhoea stopped virtually overnight, enabling me to sleep but the epigastric pain continued. I see my regular rheumatologist who then starts me on the following prednisolone regime
50mg 7 days
40mg 7 days
30mg 7 days
20mg 7 days
15mg 14 days
10/15mg alternate 14 days
then 10mg
I am currently on 15mg.
It has nearly cured everything!!!! I am able to eat full meals without pain but unfortunately am piling on the weight as a consequence :lol: I still have about 1 episode of diarrhoea a month which is very painful but generally over in one BM and controlled easily with one tab of imodium. A huge, huge, huge improvement.
HOWEVER...
They did a faecal caprotectin which was 227 and 'consistent with active GI inflammation'
All my consultant did was send me a copy of the result with NO explanation of the implications and I've not to see him for another 2 months!! And I've not to see my GI for over 6 months! I thought this test was related to crohns/colitis. I don't think it CAN be related to serositis/sjogren's.
I know 227 is not a phenomenally high result (Also it was done 4 days after the steroid shot which may have affected it) but my symptoms are certainly not NEARLY as bad as what I have read on here. I'm not going 40x a day and never have been.
I'm just a bit confused about what this result means considering everything had been clear so far. Bloods since the steroids show my ESR is 2! Yes 2!! and my liver function is great. I have never in my puff had an ESR of 2. Also I no longer have palpable lymph nodes and other telltale signs the inflammation has gone down.
You're a trooper if you've read this far and I really appreciate it!
Any thoughts?
