Share Facebook
Crohn's Disease Forum » Your Story » Undiagnosed and confused


10-07-2012, 07:35 AM   #1
lsgs
Senior Member
 
lsgs's Avatar
Undiagnosed and confused

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 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?
10-07-2012, 08:32 AM   #2
Astra
Moderator
 
Astra's Avatar
 
Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

My Support Groups:
Hiya lsgs
and welcome

Yeah I read it all and it's familiar! Feeling better after a round of Pred proves that there's some inflammation present, yeah?
Once off the Pred be prepared for symptoms to come back, keep a journal of all times, symptoms etc and be determined to get a firm diagnosis of an IBD.
You don't bleed with IBS. I can't stand gastros who fob you off as nuts! Get a second opinion!
If it's not an IBD then I've no idea! I don't know the other conditions you've mentioned.
Pop over to our Undiagnosed Club, lots of peeps in there with the same as you, and they'll advise and support you.
Good luck
Joan xxx
__________________


Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




http://www.facebook.com/#!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

10-07-2012, 02:35 PM   #3
lsgs
Senior Member
 
lsgs's Avatar
Hiya!

Thanks for the reply.

As I say the frustrating thing is once you are labelled as being 'just nuts' it's very difficult to break free from that, so my psychologist has actually written to my GP, gastro and rheumatologist to say this is not psychological, it is physical. Which is good because at least they can't blame it on that anymore. She has seen that I have made no progress doing psychological techniques then I get a steroid shot and I make 90% improvement.

As I say sjogren's very rarely causes these kind of symptoms. Serositis as well is a rare thing and I'm just not convinced it would cause a raised calprotectin. That result has thrown me, I fully expected it to be negative.

Due to see GP tomorrow as they are not happy with my cholesterol and WCC on pred but not hopeful they will be able to shed any light.

I have posted my post in the forum you mentioned, I hope that's okay to double post
10-08-2012, 09:30 PM   #4
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Hi lsgs and welcome,

Wow, you certainly have a tough case, I'm sorry you've been going through this

Do you ever take aspirin or ibuprofen? Especially prior to the latest fecal calprotectin test?

Next colonoscopy I'd ask them to stain for mast cells to test for mastocytic enterocolitis.

Please keep us updated as to how you're doing.
10-09-2012, 12:44 PM   #5
lsgs
Senior Member
 
lsgs's Avatar
Hi lsgs and welcome,

Wow, you certainly have a tough case, I'm sorry you've been going through this

Do you ever take aspirin or ibuprofen? Especially prior to the latest fecal calprotectin test?

Next colonoscopy I'd ask them to stain for mast cells to test for mastocytic enterocolitis.

Please keep us updated as to how you're doing.
I never take aspirin or ibuprofen so I don't think this could have affected it.

Are there any other results you would expect (bloods etc as I've had a number of wacky unexplained results) to see with mastocytic enterocolitis? It sounds interesting!
10-09-2012, 07:45 PM   #6
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Frankly, I don't know how mastocytic enterocolitis affects lab results, sorry. It was all I could think of at the time that fit the actual symptoms that might work.
10-12-2012, 07:56 AM   #7
lsgs
Senior Member
 
lsgs's Avatar
Hi guys,

Don't know if this update helps.

We may have some progress. Had a chat with rheumatologist on the phone this morning.

First point is he thinks the taper may have been too fast. To go back up to 20mg then taper down 1mg pw to try to get me down to 10mg. Which is great news as I felt fine on 20mg but this latest taper has killed me.

He is saying that they need to add in a second drug.

His problem is what to add in as he is not convinced it is sjogren's syndrome causing these symptoms. He said that sjogren's is rare in itself (so studies on it aren't as prevalent) and it's even rarer (i.e. it just doesn't happen) to have diarrhoea and abdo pain like this caused by sjogren's. He did however say that it IS an inflammatory condition so he can't rule it out. He is talking about adding in hydroxychloroquine again (although this was presumed to be making my abdo pain WORSE last year so I'm a little nervous) or sulfasalazine or azathioprine. Last time I saw him he talked about rituximab. He said he doesn't want me on methotrexate as I am young and it would increase my chances of lymphoma?

He thinks it could be inflammatory bowel disease and is going to write to my GI. However, my GI will laugh in his face if he suggests it after all the scoping he's done and also he said diagnosing it would be problematic given my response to pred, scoping wouldn't show anything now.

So what does he then prescribe as a second drug, something to treat sjogren's or something to treat inflammatory bowel disease?

*sigh*
10-12-2012, 08:35 AM   #8
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
I don't know much about sjogren's. What would be nice is if there is a medication that can treat both other than the Prednisone. If azathioprine treats sjogren's, that might indeed be a good one.

Other than the abdominal issues, do you have any symptoms of sjogren's?
10-12-2012, 05:54 PM   #9
lsgs
Senior Member
 
lsgs's Avatar
I don't know much about sjogren's. What would be nice is if there is a medication that can treat both other than the Prednisone. If azathioprine treats sjogren's, that might indeed be a good one.

Other than the abdominal issues, do you have any symptoms of sjogren's?
Yes I have all the classic sicca symptoms (dry eyes, dry mouth, difficulty swallowing, reflux) but they are not too bothersome.

My sjogren's has been described as 'mild' and I would agree with that. Which makes the likelihood of it being related even less likely...
Reply

Crohn's Disease Forum » Your Story » Undiagnosed and confused
Thread Tools


All times are GMT -5. The time now is 04:45 AM.
Copyright 2006-2017 Crohnsforum.com