Anybody else in by boat?

[TheLongRoad]

Hi,

I was diagnosed with Crohn's a few years ago now, and like all of you I've been through a lot. I felt it was time I reached out to others enduring a similar struggle.

As my initial post, I was hoping to answer a question which has been pressing in my mind for a long time now; are there other Crohn's sufferers that share my particular subset of the disease, and can we help each other.

The key aspects of my disease are:

1. Axial arthritis: At minimum it is an endless dull ache in my spine, ribs and hips. On bad days, the pain is quite severe and normal daily life is just barely doable. Breathing is often uncomfortable and sometimes painful.

2. Gut pain: General gut discomfort and pain, pretty much constant.

3. Cognition/Energy/motivation levels: I know I am entering a flare when my energy levels plummet, my emotional state deteriorates rapidly, and my cognitive abilities are significantly impaired.

I have very little trouble with my stool, which is pretty regular in general.

Does anyone else here experience the disease in a similar version, where it is primarily expressed as Axial Arthritis?

I am a 30 year old male, with no additional health problems besides the Crohn's.


Thanks,

 

[ronroush7]

Have you been to see a rheumatologist? You also might want to have your blood checked to see if you are anemic. That could explain your energy and motivational levels.

 

[MizzSarah]

I ended up experiencing lots of arthritis mimicking pain for years before I started to notice gut troubles. It started off as a random swelling on my left ankle (ruled out bites etc) and then I started to have issues with all my joints. I had countless testing done and the only out of the norm thing was that there was less blood flow going into the left leg. They explained it as reflex sympathetic dystrophy. Then they gave me idiopathic pain syndrome to explain away how I had severe pain in all my joints. If you look it up though it’s basically just a title to validate the pain but there being no known cause.

If you have any other questions feel free to pm me. Your situation seems eerily similar to the start of my journey.

Hi,

I was diagnosed with Crohn's a few years ago now, and like all of you I've been through a lot. I felt it was time I reached out to others enduring a similar struggle.

As my initial post, I was hoping to answer a question which has been pressing in my mind for a long time now; are there other Crohn's sufferers that share my particular subset of the disease, and can we help each other.

The key aspects of my disease are:

1. Axial arthritis: At minimum it is an endless dull ache in my spine, ribs and hips. On bad days, the pain is quite severe and normal daily life is just barely doable. Breathing is often uncomfortable and sometimes painful.

2. Gut pain: General gut discomfort and pain, pretty much constant.

3. Cognition/Energy/motivation levels: I know I am entering a flare when my energy levels plummet, my emotional state deteriorates rapidly, and my cognitive abilities are significantly impaired.

I have very little trouble with my stool, which is pretty regular in general.

Does anyone else here experience the disease in a similar version, where it is primarily expressed as Axial Arthritis?

I am a 30 year old male, with no additional health problems besides the Crohn's.


Thanks,

 

[TD12345]

Your post just made me extremely emotional. I am new to this website. I was diagnosed with Crohn's a few years ago (however I was experiencing symptoms many years before that). I have every one of the symptoms you listed. I've never met anyone with the same symptoms as mine so when I saw your symptoms are the same as mine, I just wept. I am very interested in the responses you get. Thank you for your post.

 

[D Bergy]

Your symptoms resemble Lyme disease accompanied by at least one coinfection.

Which symptoms appeared first? Gastrointestinal problems or the others?

I have Crohn’s but my wife has Lyme disease so I am familiar with both. Lyme disease weakens immunity and it isn’t uncommon to get Crohn’s symptoms on top of Lyme disease. Brain fog is a common Lyme complaint. It is similar to Syphilis in many respects.

Dan

 

[TD12345]

If you are talking to me, Dan, my gastrointestinal problems came first. I have all the same problems the post said along with extreme nausea and vomiting on the worst days.

 

[Maya142]

My daughter has both axial arthritis and Crohn's. In her case, the arthritis is much worse than the Crohn's. She has Ankylosing Spondylitis, which affects her spine, SI joints, hips, jaw and a lot of other joints.

Her AS is severe but her Crohn's has been mild so far, thankfully. She is on a biologic for the AS and is on imuran for her Crohn's.

Are you being treated by a rheumatologist as well as a GI?

 

[TheLongRoad]

Thanks for your helpful responses everyone,

ronroush7
I do deal with a rheumatologist, who prescribes sticking to my current medication as long as I can (Mesalamine). Along with my specialist and GP, he wants to avoid the more intense treatment options if possible.

As for blood work, I have had it done a few times now. Each time I am absolutely certain it will come back showing some serious deficiencies. Every time, however, nothing in their findings suggest anemia/malnutrition etc.

MizzSarah
Interesting. Thanks for this information, I'll definitely be taking some time to reflect on what you're saying here. I'm no medical specialist, but my sense so far is that the medical profession does not have a very good grasp on this family of conditions. I'm not surprised to hear that they weren't able to explain the pain you're describing, beyond vague categorization.

TD12345
Thanks for you post, friend. I understand your reaction. If we share similar symptoms, we should also share coping methods that work for us.

D Bergy
Very interesting, I have never considered this or heard it in any other context. It's difficult to tell which came first. I have had symptoms of Crohn's on and off for something like 15+ years, but was never diagnosed until more recently when the arthritis began to get severe and some blood in stool appeared (triggering a colonoscopy and biopsy). Cognitive/emotive issues have been around about as long, usually tied closely to the somatic problems.

Brain fog is an excellent descriptor for the sensation. I will definitely learn more about Lyme and think on this.

Maya142
Your daughter's condition sounds very similar to mine. Though my blood does not have the relevant markers for AS, my arthritis some other symptoms are precisely what would be expected from AS (including in the sacroiliac joint).

I am being treated by a rheumatologist in addition to my GI specialist. I'm interested to hear that your daughter is being treated for the AS separately, as currently, I am only taking Mesalamine for bowel inflammation.


Thanks again folks. Today is my 31st birthday, which is supposed to be a happy occasion, but it has been a bad health day and frankly I'm quite depressed. Reading your responses is a welcome distraction.

 

[Maya142]

Have you had an MRI? Do you have sacroiliitis based on the MRI? Even if you are HLA B27- (that is the gene associated with AS), you would qualify for an axial spondyloarthritis (SpA) diagnosis, if you had SI joint inflammation on MRI as well as clinical symptoms of SpA. Axial spondyloarthritis tends to flare independently from Crohn's, so is treated as a separate disease, usually.

There are medications used for both Crohn's and SpA, which treat both diseases. Those would medications like Remicade/Humira, which are biologics. Sulfasalazine, which is similar to mesalamine, is another option but it doesn't really work well for axial arthritis. It does work for peripheral arthritis though. MTX would be another option for peripheral arthritis.

Your best bet for axial arthritis are NSAIDs and biologics. NSAIDs are usually not allowed for Crohn's patients - however, if your arthritis is worse than your Crohn's, then your GI may allow Celebrex (which is easiest on the gut of all the NSAIDs). My daughter has severe AS and mild Crohn's so is on an NSAID and has been for years. It really helps her.

The other option would be biologics like Remicade/Humira. They work very well to control both arthritis and Crohn's. Both my daughters have AS and both have been on biologics for years. Biologics have been life changing for them and they have had no side effects.

Here is some good info explaining the types of arthritis associated with IBD:
http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

I would also check out Spondylitis.org - they have a whole section on axial SpA and treatments.

I would consider seeing a second opinion rheumatologist - mesalamine is not going to do anything for your arthritis. I'm not sure why you aren't being treated. Axial SpA can progress to AS if left untreated and can cause a lot of joint damage. Biologics are your best bet for preventing joint damage and disability.

My husband also has AS and was diagnosed way before biologics were available. He has a lot of joint damage - had his hips replaced at age 30, and has had a total of 5 hip replacement surgeries. He has a partially fused spine and fully fused SI joint. He has a completely destroyed ankle.

In contrast, my daughters have much less joint damage, even my younger daughter who has pretty severe AS. They do have some in their SI joints and hips (and jaw for my younger one) but for the most part we have been able to save their joints by treating them aggressively.

Good luck!