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Newby

I am new to the forum. I was diagnosed with Crohns at age 13 with symptoms at 12 years old. I was very ill and hid my sysmptoms from my family at first which made me even more ill before my parents took me in to seek treatmeat. I was very thin 85lbs, bleeding, needing a blood transfusion and not being able to eat without being near a restroom. I have been lucky so I thought and in remission for years with a few minor flares. Long story short I hadn't seen a specialist since I was old enough I left my pediatric Specialist at 18. I had a few minor flares that my regular physican prescribed steroids and anti inflammatory drugs for over the years and had some issues with foods I ate from time to time but never a full on flare that continued. I know now there is alot more information over the 20+ years and I should have been proactive. Maybe I was in denial and looking back now and what I know from my new kick butt GI specialist I probably was having minor symptoms the whole time and should have been on continued therapy.

A year ago I was having terrible back pain that started in my hip and butt on the left side and over time began to get worse. It spread up my spine and into my rib cage from my spine to the left part of my middle back and got worse over time to the point after any period of rest or sitting for a long period of time I would get up in chronic pain and stiffness. The only relief was to struggle through the pain take ibuprofen and stay active until the cycle would begin again after a period of rest. It was so bad I could hardly bend over or bend side to side and I would wake up like clock work every morning around 1AM in pain and stiffness again to take more ibuprofen and hope for a few more hours of sleep. I went to the emergency room one night due to pain and unable to hardly move. After rounds of tests MRI and x-rays of my spine inflamation was shown and I was sent to a spine Specialist and physical therapy. Spine specialist told me I had bone marrow edema of my spine, inflamation of the bone marrow and in a few areas compression was noted between the virtbrae. I was given pain pills over this time but I didn't like taking them even though at some points ibuprofen wasn't ebough. I had a few issues time to time with a stiff neck and painful ribs. I was told to take 800mg of ibuprofen every four hours for pain and inflamation and continue physical therapy. Not the answers I wanted but continued in pain with no real relief.

During this time I began having stomach issues and I played it off as the ibuprofen doing a number on my stomach. I was at a point I gave up on ever finding answers or relief until I went in for a colonoscopy after fearing a flare Colonoscopy confirmed what a feared and I was sent to a Specialist. What a blessing that was not only could I get a treatment plan but She also noted I needed to see a RA Specialist and suggested a few spine/joint issues that could be causing the back pain. Bingo...after researching them I felt vindicated once I read about ankolosing spondylitis. I was reading exactly how I felt and the same symptoms others experienced is exactly was I was experiencing. I saw the RA specialist more x-rays and I now have a diagnoses and an explanation. I started a treatment plan for both and the pain in my back improved greatly simple functions like vaccuming, being able to bend over, being able to sit on the floor to play games with my kids and being able to get back up without my body locking up in pain and stiffnrss, not being fatigued and sleeping were mostly normal again. I guess you forget how bad you felt and you let yourself get until you almost feel normal again. Granted my crohns is still a roller coaster ride but any relief was great. I started a steroid and another drug that would help with both diseases but recently they upped the dose and now I have been feeling dizzy, faint and throwing up within an hour after taking it and felt Ill for a few hours after. I called my Specialist office and now waiting to see what the next step will be. I am on a decreasing dose of steroids and feeling a little more stiffness in my back and still having Crohns issues. I am afraid to go back to the full on pain and not being able to get my crohns back to remission. They have talked about starting me on a TNF blocker which would help control both.

What I have learned is listen to your body, get second opinions and don't give up. Just another bump in the road. I also learned that it is not uncommon for Crohns patients to also have AS. I new my Crohns would flare again at some point but I didn't expect to be diagnosed with another disease. I have been doing so much more research and it amazes me the more I read how many other complications and disease can all be linked to Crohns patients.
 
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Maya142

Moderator
Staff member
My younger daughter has both AS and Crohn's. I'm glad you have been diagnosed finally. She has a lot of the same symptoms as you do with her AS - hip and butt pain and spine pain. She also has pain in many of her other joints.

My husband and older daughter also have AS.

Both my girls have been on biologics for years. The older one is MUCH better - she went from being in a wheelchair to being an absolutely normal college student - she even plays soccer! The younger one is better, but a work in progress. There are certain anti-TNFs that treat both AS and Crohn's and those are the ones likely to be used (Remicade, Humira, Cimzia and possibly Simponi).

Other medication options include NSAIDs (which are typically not recommended for people with Crohn's BUT it depends on your situation - my younger daughter is on an NSAID because her AS is so much worse than her Crohn's). Sulfasalazine is sometimes used but is typically not very effective for AS that affects the spine. Methotrexate is also used for both AS and Crohn's.

Anti-TNFs are the most effective meds out there that treat both. We were very hesitant about starting them, especially since our daughters were teenagers, but honestly, we have never regretted that decision - we have only regretted not starting them sooner!

Spondylitis.org has a lot of good info.

We've found that ice and heat helps with joint pain, as does as TENS unit. Both girls take NSAIDs.

Good luck!
 
Thank you! I am glad your Daughters and husband have found some relief the pain is Chronic and debilitaing. I have noticed over the years some joint pain in my heels, the tendons in my ankles and knees but played it off as maybe pain from the long doses of steroid from Crohns when I was first diagnosed. I wish I would have listened to my body more instead of making excuses. After talking to my RA specialist it started to all add up. My RA Specialist and my GI Specialsit are working together on my treatment and I know I need to be patient to find what will work. My RA specialist talked about Remicade and Humira but since I had already started the treatment with azathioprine and prednisone for Crohns and was seeing some relief we decided to continue that route until my next colonoscopy in 6 weeks and my next RA appoitment. I just started getting Ill with the azathioprine so I am waiting to see what is next. Some minor stiffness in my back has returned not near as bad but i fear the decreasing of steriods and not being able to absorb the azathioprine is going to bring back the full pain of both. Thank you again this was helpful!
 

David

Co-Founder
Location
Naples, Florida
Welcome to the community. Thank you for taking the time to share your story and advice. Yes, unfortunately AS isn't near as uncommon in Crohn's patients as we would like. I think quite a few on this forum have undiagnosed AS in fact.

Again, welcome to the community. :)
 

fuzzy butterfly

Well-known member
Hi and a warm welcome ☺. Thanks for telling us your story. I think i may have AS im see my consultant Gi next month and im going to ask about it.
I really hope you get things sorted and under control very soon. Best wishes 💕💕
 
Hi and a warm welcome ☺. Thanks for telling us your story. I think i may have AS im see my consultant Gi next month and im going to ask about it.
I really hope you get things sorted and under control very soon. Best wishes ����
Thank you, I hope you get things sorted out also. :ysmile:
 
Welcome to the community. Thank you for taking the time to share your story and advice. Yes, unfortunately AS isn't near as uncommon in Crohn's patients as we would like. I think quite a few on this forum have undiagnosed AS in fact.

Again, welcome to the community. :)

Thank you, glad to be here :ysmile:
 
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