- Joined
- Feb 22, 2016
- Messages
- 29
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.
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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