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Crohn's Disease Forum » Your Story » First Time - Blood Test Frustration


12-12-2016, 11:02 PM   #1
Gertie
 
Join Date: Dec 2016
Location: Brisbane, Queensland, Australia
First Time - Blood Test Frustration

This is my first time on the forum (I have been reading the forum for years but finally decided to join).

I was dx with Crohns in 2008. My Crohns is not severe thankfully, although it is a cause of anxiety. My blood results indicate that I have been in remission since about 2010. Which is great, except I still seem to be symptomatic, which I find frustrating as I am regularly made to feel like a hypochondriac!

Tried the FODMAP diet twice, as GI thinks I have IBS as well, (religiously followed it) both times my D worsened due to lower fibre intake.

This year I developed arthritic type pain in my right hand, which the GP put down to a minor trauma, but x-rays were all clear. MRI showed minor inflammation in the synovial membrane of my wrist, but nothing too worthy of further investigation. Blood work was normal (ESR and CRP not elevated) so GP said no autoimmune cause and just rest it.. So as an experiment I decided to start taking my Pentasa again (been off it for about 6mts), and low and behold the pain was gone after a week. I have now been 2 days without Pentasa after being back on it for a month (waiting on new script from GI) and pain is as bad as when I first went to the GP.

I have always had a lot of faith in medicine and Drs but I am starting to learn that with this disease sometimes we have to learn to trust our own instincts and knowledge! (Apologies for the long post!)
12-12-2016, 11:33 PM   #2
my little penguin
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spA is common with Crohns
It tends to not show on X-rays for years and not have high crp or esr
Tagging maya142

http://www.spondylitis.org/Types-of-Spondylitis
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12-12-2016, 11:39 PM   #3
Gertie
 
Join Date: Dec 2016
Location: Brisbane, Queensland, Australia
Does it tend to mirror what's happening with the gut, or can it run its own course independent of the Crohns?
12-12-2016, 11:42 PM   #4
Maya142
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Spondyloarthritis is common with Crohn's. You would have to see a rheumatologist to be diagnosed with spondyloarthritis.

Inflammation in your wrist is concerning. CRP and ESR aren't always high - I think in about 40% of patients, they are NOT high. Other red flags would be morning stiffness, pain that gets better with movement and worse with inactivity and red or swollen joints.

Often the lower back and hips are affected first, but honestly, any joint can be affected including the wrist.

In some cases, SpA flares when the Crohn's flares - this is typical of peripheral joints (joints other than the spine), while axial SpA (SpA than involves the spine, hips and SI joints) tends to flare independently and has to be treated independently.

Here is some good info that explains the different types: http://www.ccfa.org/assets/pdfs/arth...plications.pdf

I would insist on seeing a rheumatologist and perhaps another GI. Do you have any tests confirming your Crohn's is in remission? A colonoscopy and small bowel imaging (MRE or pillcam)? If not, I would push for more testing.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-13-2016, 11:37 AM   #5
Lisa
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Greaaattt.....I've been having issues with lower back pain lately, and some newer hip pain...after reading the 2 links it looks like I should be scheduling an appointment with a rheumy! Too bad my old GP closed up shop...he specialized in rheumatology!
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30 plus years and counting with UC/Crohn's!
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
12-13-2016, 06:51 PM   #6
Maya142
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Lisa, you should definitely see a rheumatologist. SpA can cause permanent damage to the joints, often the hips and spine and it can become very disabling. It's best to catch it and treat it early.

Good luck!
12-13-2016, 10:35 PM   #7
Lady Organic
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Does it tend to mirror what's happening with the gut, or can it run its own course independent of the Crohns?
I have minor arthritis in both my wrists and fingers. It developped 12 years after initial diagnosis, right after a remission. IBD arthritis can run independently of IBD activity, this is my case.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
12-13-2016, 10:41 PM   #8
Gertie
 
Join Date: Dec 2016
Location: Brisbane, Queensland, Australia
That is interesting did it progressively get worse or just stay at the same level?


12-13-2016, 10:57 PM   #9
Gertie
 
Join Date: Dec 2016
Location: Brisbane, Queensland, Australia
Spondyloarthritis is common with Crohn's. You would have to see a rheumatologist to be diagnosed with spondyloarthritis.



Inflammation in your wrist is concerning. CRP and ESR aren't always high - I think in about 40% of patients, they are NOT high. Other red flags would be morning stiffness, pain that gets better with movement and worse with inactivity and red or swollen joints.



Often the lower back and hips are affected first, but honestly, any joint can be affected including the wrist.



In some cases, SpA flares when the Crohn's flares - this is typical of peripheral joints (joints other than the spine), while axial SpA (SpA than involves the spine, hips and SI joints) tends to flare independently and has to be treated independently.



Here is some good info that explains the different types: http://www.ccfa.org/assets/pdfs/arth...plications.pdf



I would insist on seeing a rheumatologist and perhaps another GI. Do you have any tests confirming your Crohn's is in remission? A colonoscopy and small bowel imaging (MRE or pillcam)? If not, I would push for more testing.






12-13-2016, 10:58 PM   #10
Gertie
 
Join Date: Dec 2016
Location: Brisbane, Queensland, Australia
My Gastroenterologist has me scheduled for routine scope mid next year. The Pentasa seems to be helping at the moment but I will keep an eye on it based on what everyone has said. I have also suffered from hip and lower back pain (sacrum region) for some years now on and off. Physio helps but it always seems to come back, particularly when I stop walking regularly.


02-07-2017, 07:17 PM   #11
Gertie
 
Join Date: Dec 2016
Location: Brisbane, Queensland, Australia
Well finally been referred to rheumatologist and for a nerve conduction test. Although can't get in till April. Symptoms have worsened and now getting pain in both hands.


02-07-2017, 08:14 PM   #12
lisadc1
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Location: Kentucky

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I, too, have back and hip issues now. Had a wreck - was t-boned three years back. Seems like that is what flared it all up. But mostly my joint issues are there and my left shoulder and knee, as well as fingers. Waiting on info to see a rheumy...This disease never fails to be interesting!
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