Crohn's and AS?

[laura4232]

Hello All,

It was suspected I had mild CD in 2005 and I was officially diagnosed on 2010 after an emergency appendectomy and bowel resection. I believe I was in surgical remission for about 4 years. In 2014 I flared and I have been currently flaring for the last 8 weeks. Had a CT and colonoscpy a couple of weeks ago and results were a lot better than I was expecting considering the symptoms I was having (mild terminal ileum, 3mm polyp removed, CT showed some thickening of the ileum). I was referred to a rheumatologist in 2014, but being a new patient it took forever to get in and I found out I was pregnant after I made the initial appointment, but I kept the appointment and she did some blood work to get a baseline since we couldnt do any imaging.. I have been experiencing a lot of joint pain with the current flare and saw my rheumatologist again on Monday. She told me clinically I have AS and I am waiting on inflammatory marker labs and x ray results. She informed me I tested positive for the HLA-B27 gene in 2014. To say the least, I have been engulfed with looking at AS and CD for two weeks on every website imaginable. I am having a hard time differentiating enteropathic arthritis and AS. I have been thinking a lot of the past and how much pain I have been in for at least 17 years, especially with my low back aND so many other things that correlate with both of these diseases. I was in a car accident in 1999 and was told then my L5 was fused to my sacrum, but supposedly I was born that way. Also, my Dad has had back, shoulder, neck and knee pain for years (some intestinal and rectal issues). I am starting to think he may need to see a rheumatologist as he never has! My Mom and Dad and I all have eye issues too! Is it foolish of me to think there could be a genectic link between my dad and I? Have I just overloaded my brain from researching too much? Does anyone else feel like they think way back and can remember things from years ago that you now think we're disease related? Sorry for the long post and thanks to all who took the time to read it. By the way, I am a 33 year old female.

 

[ronroush7]

Welcome. I am sorry for all you are going through. Yes, I have thought about things that happened earlier in my life and wondered if they were a mild form of Crohn's. Sometimes there is a hereditary link in Crohn's. Best to you.

 

[Clash]

Hu. My son has CD and JSpA(juvenile spondyloarthropathy) in relation to IBD. Rheumy stated if joints were to fuse the label would be changed to AS.

He is on Humira and methotrexate for both conditions. His joints gave him issues long before his CD flared for the first time.

He also hasaid issues with his eyes. Episcleritis which would flare with his CD in the beginning. For awhile now he has been asymptomatic with his CD even though he required surgery due to severe active inflammation. His JSPA has responded really well to humira and higher dose of mtx.

Another Mom here, maya142, has two children and a husband with AS. One of the daughters also has CD with her AS. I tagged her so she should be by.

 

[laura4232]

Thanks! I go back to the GI on Wednesday to discuss 6mp and biologics. Rheumatologist is recommending biologics too. I am currently getting ready to finish Flagyl and still several weeks on Budesonide for now. I am going to Mexico for vacation in April and I don't think I want to try biologics until I return, especially with the Zika Virus and other viruses/infections.

 

[laura4232]

Also, we are aware of nobody in the family that has IBD or AS or arthritis, besides me.

 

[SN8888]

I recently posted this on another thread about AS (quoted below). The researcher (Ebringer) has published a few papers about AS and Crohns and klebsiella bacteria.

>>

http://www.kickas.org/medical/15.shtml

Not sure if it would help, but their theory is that antibodies generated against intestinal klebsiella pneumonia bacteria cross react with HLA-B27 to cause AS. A low starch diet reduces the population of these (klebsiella) bacteria and can reduce symptoms. There is also ongoing research about how this may play a role in Crohn's disease.

For my GI problems (no AS), a strict low carb/low starch diet made a big difference and was helped even more when combined with a daily dose of saccharomyces boulardii yeast (eats carbs? and has been shown to help with multiple GI problems - see wikipedia link below)

https://en.wikipedia.org/wiki/Saccharomyces_boulardii

Obviously don't quit taking your medicines, but if you haven't already tried this, you could ask your Dr about it.

 

[Maya142]

Hi and welcome.

My husband and daughters all have AS. My younger daughter also has Crohn's. In her case, the Crohn's and the AS seem to flare at different times. In terms of the name, enteropathic arthritis or AS or IBD related arthritis, that will depend on whom you ask! Every GI and rheumatologist might call it something different, but the name really does not matter.

My daughters are both on biologics and immunomodulators. NSAIDs are also used for AS but are used much less if the patient also has Crohn's.

Both my daughters and my husband are HLA B27+. We have heard from the pediatric rheumatologist my kids used to see, that often once kids are diagnosed and rheumatologists ask, they find there is often a family history of "arthritis" - lower back pain, hip pain, knee pain etc. So it's definitely possible that your father has had AS without knowing it. It also depends on severity depending on the person, so if it's been mild his whole life, it's quite possible he was just able to live with it.

Iritis is one of the eye complications that is associated with Crohn's and AS. If you have a red, painful, photosensitive eye you should see an eye doctor immediately.

Both my girls have partially fused SI joints. My husband has completely fused SI joints and a partially fused spine. He has also had many hip replacements. However, he lives a pretty normal life and has been in remission for years! My older daughter is on Humira and Methotrexate and doing very well. My younger one is a work in progress.

Spondylitis.org has a lot of good info.

Good luck!

 

[ronroush7]

Welcome. I am sorry for all you are going through. Yes, I have thought about things that happened earlier in my life and wondered if they were a mild form of Crohn's. Sometimes there is a hereditary link in Crohn's. Best to you.

Right before I graduated from college, I applied for a job at AT&T. They did a physical on me and called me back saying that there was some problem with my blood . I didn't follow up but I wonder if that could have been Crohn's earlier in my life.

 

[Crohns and AS]

I was diagnosed with Crohns when I was younger and 20+ years later was just diagnosed with AS. The pain started about a year ago very painful left hip and hurt after a resting period when I got up and improved with movement, it got worse and moved up my left spine and into my rib cage on the left side to my spine. I also had some pain and stiffness in my shoulders and chest and a stiff neck for a couple weeks but the the back and hip were constant.

I refer to it as being locked up. It was a terrible cycle. Get up in terrible pain, down some ibuprofens keep moving until the next time I sat or laid down get up, down some more ibuprohen and keep moving. It got so bad my husband took me to the emergency room from the pain and not being able to hardly move one night. When I got up from sitting or laying down it took time before I could stand or move. Sitting in certain postions was painful also. I couldn't bend side to side or bend over without pain. This was very discouraging having Crohns and having terrible pain just behinding over to try and go to the bathroom during a flare. I couldn't sleep through the night without waking up and taking more ibuprofen. My body literally locked up if I tried to get up in pain.

I was miss diagnosed by a regular Physican and the Spine Specialist just told me I had bone marrow edema of my Spine told me to take ibuprohen (didn't know at the time this was a no no for a crohns patient after years of being in remission) do physical therapy and work on posture. It took my GI specialist and a Crohns flare to figure it out. After the RA appoitment I finally had a diagnoses with more xrays and looking at my previous MRI's I had done the that past year. It all added up and I honestly felt relieved to finally have answers I was getting depressed thinking the pain would never end and ibuprofen wasn't fully taking away the pain at times. What I learned...

Signs were there from years past. I have had sore/painful Achilles tendons, knees, chin splints and shoulders. I played it off as sports activities or time on steriods. They were never that painful to alarm me to go to a Doctor. My great Aunt had RA and my dad has had knee and back issues also. I also learned is is not uncommon for Crohns patients to have AS or any type of spondylitis or arthtitis. I'm still "new" to the AS and learning and wonder what to expect. It is a roller costed ride dealing with both but I am seeing pain relief which is a blessing in itself.

 

[my little penguin]

Ds was dx with Ibd and JSpA
He takes humira and Mtx to control both
He is also hla b27 +
No signs of either in the family
But genetic testing says otherwise for Ds
He has lots of genes for both

 

[Tryagain]

How are you doing now Laura ?

I have Crohns, I was diagnosed 15 years ago. 20 years before that I had a year of bad SI pain and had a provisional diagnosis of SA but it cleared up with 6 months of ibuprofen. I have since heard that SI pain often precedes the onset of Crohn's sometimes by many years as in my case. I have always had joint pains in various places but nothing really severe. The SI pain came and went but really cleared up after I had my 3 children.

Recently I had a stool test done by an alternative practitioner which showed I have high levels of Klebsiella, which I understand is a pathogenic bacteria. I have read a theory that in people with HBL27 and AS it may be caused by the body mistaking healthy tissue in the joints as the klebsiella pathogen and attacking it. Well that's a huge simplification, but the theory is that as Klebsiella feeds on starch, lots of people get relief from AS symptoms by eating a low starch diet, like the Specific Carbohydrate Diet. I have tried this myself in the past and it did help with the crohn's but I found it very hard to stick to.

I thought you might want to look into this diet as it may help you. The man behind the Klebsiella theory is Professor Alan Ebringer and you can find his diet on-line. ( see the kicks.org website)

I am not on any medication myself at the moment but am suffering with a Crohn's flare, eye and joint issues and so I am considering what my treatment options are. It would be good to hear what treatment you are having and how you are doing now, I hope you are feeling better.

 

[Maya142]

The Klebsiella theory has no good proof behind it. Alan Ebringer's results have never been duplicated in rigorous trials:

"In 1996, in a paper supporting his theory, Dr. Ebringer published the chart of one of the patients that he had been following over a period of time. The patient’s sedimentation rate (ESR) showed a clear decline from 1983 to 1995, during which time he had followed the special diet. It is important to note that although ESR is sometimes used as a measure of disease activity in patients with arthritis, it is recognized that ESR levels in AS are not necessarily indicative of how well a patient feels. Dr. Ebringer believes that the lowering of said patient’s ESR level demonstrated the success of the diet.

"Other studies have failed to duplicate the results of Ebringer’s research into how a low starch diet influenced the growth of klebsiella in the gut and have found that the diet has little or no effect on symptoms.

The London AS/Low Starch Diet was created by Dr. Alan Ebringer, a London-based rheumatologist and researcher who believes that klebsiella bacteria in the gut of people with ankylosing spondylitis (AS) are involved in triggering the disease process via a complex immune response.
As for the diet itself, in the absence of convincing trial evidence of proven benefit, it is impossible for a patient organization such as SAA to endorse low-starch diets as a treatment strategy.

The only thing that can lower your chance of progression is biologics and NSAIDs.

AS can cause permanent damage - my husband has had 5 hip replacements and has a fused spine, destroyed ankle and fused SI joints. It is a serious disease, just like Crohn's.

 

[ronroush7]

How are you doing now Laura ?

I have Crohns, I was diagnosed 15 years ago. 20 years before that I had a year of bad SI pain and had a provisional diagnosis of SA but it cleared up with 6 months of ibuprofen. I have since heard that SI pain often precedes the onset of Crohn's sometimes by many years as in my case. I have always had joint pains in various places but nothing really severe. The SI pain came and went but really cleared up after I had my 3 children.

Recently I had a stool test done by an alternative practitioner which showed I have high levels of Klebsiella, which I understand is a pathogenic bacteria. I have read a theory that in people with HBL27 and AS it may be caused by the body mistaking healthy tissue in the joints as the klebsiella pathogen and attacking it. Well that's a huge simplification, but the theory is that as Klebsiella feeds on starch, lots of people get relief from AS symptoms by eating a low starch diet, like the Specific Carbohydrate Diet. I have tried this myself in the past and it did help with the crohn's but I found it very hard to stick to.

I thought you might want to look into this diet as it may help you. The man behind the Klebsiella theory is Professor Alan Ebringer and you can find his diet on-line. ( see the kicks.org website)

I am not on any medication myself at the moment but am suffering with a Crohn's flare, eye and joint issues and so I am considering what my treatment options are. It would be good to hear what treatment you are having and how you are doing now, I hope you are feeling better.

Visit your doctor and let him know all your symptoms.