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How do you all cope with the extra condtions of Crohn's disease?

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Crohn's Disease
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Posted 2/20/2017 5:50 AM (GMT 0)
I get occasional joint and muscle pain associated with Crohn's disease, but Tylenol does not help me. I get this with or without crohn's flares. I was prescribed an anti inflammatory at one time, but I only took a couple because I was scared it would irritate my bowel further? How do you all cope with the pain of the extra crohn's related conditions?
Posted 2/20/2017 6:32 AM (GMT 0)
It depends. Sometimes exercising helps me. Nothing major just stretching well and a short jog. This hurts my knee more but helps with general aches and pains of muscles and joints for while. I also started plaquenil a few months back and that has shortened the duration of the the flare ups of aches and pains that I get. I wouldn't mess with the anti inflammatories. Cold showers help some of the aches and pains while warm water helps the others (I have a number of types of pains so I have to pick and choose which ones I want to live with)
Posted 2/20/2017 7:06 AM (GMT 0)
Thanks, I tried stretching and couldn't get off the floor. My back and tail bone really hurt me bad, but when I applied some rub on it, I could feel the heat on the skin, but could still feel the pain coming from the inside of the bowel area. I've had this before and have to let it pass on it's own. It's the crohn's.
Posted 2/20/2017 8:27 AM (GMT 0)
yikes!
when i stretch I usually stretch my shoulders by crossing my arm across my chest. I also do my legs, trying to touch my toes. stuff like that. I don't usually do anything on the floor because when I'm in rough shape I'm too stiff to do much of anything and get stuck on the floor too :/ At the most ill do it on the bed so i can always roll my self off if my back gets too tight. Have you looked into back issues that go along with the crohn's?
Posted 2/20/2017 8:49 AM (GMT 0)
Lower back and tailbone pain can be a sign of sacroiliitis, which sometimes occurs along with Crohn's disease.

http://www.mayoclinic.org/diseases-conditions/sacroiliitis/home/ovc-20166357
Posted 2/20/2017 1:56 PM (GMT 0)
I really wish there was an easy fix to this. I would love to take NSAIDs but am pretty confident they were a main culprit in starting my 2012-2015 flare. Tylenol is worthless to me. I stretch, use heating pads or ice (whichever is appropriate given the situation), and take pain killers when it's really bad (although I generally avoid them because of constipation risks). It especially sucks for migraines as the meds I take for them work better in conjunction with NSAIDs (and some combine a triptan drug with an NSAID). My neurologist thinks occasional use would be ok--I disagree.

Standing stretches can also help. You could get one of those stretch bands and use it while sitting on your bed. I feel like I'm stretching all the time because I start to hurt after being in one position for more than a couple minutes.

Exercise is one of the best treatments, if you can tolerate it. Even an easy walk about the block is better than nothing. It gets the blood flowing.
Posted 2/21/2017 12:07 AM (GMT 0)
I am a tested carrier of the gene HLA-B27 for ankylosing spondylitis, but as far as I know I don't suffer with AS, but my risks are higher to get it. This condition shows up in people with crohn's disease, but not all people with crohn's have it. I've had spinal inflammation before, (more than once) with painful swelling around the spine, but it usually doesn't last long, until the next time. I don't think it's AS? I was told it's just an arthritis associated with CD, as if we don't have enough eh?
Presently, I am 8 weeks post-op due to 2 surgeries in Dec, plus ileostomy, so I'm not back to normal yet with my energy levels. I have tried the stretching, and thank you, will try to do them in bed instead of the floor. So far I feel worse after doing the stretching?. Also have my husband take me shopping, but I only last about 10-15 minutes and have to go home. Just don't have the energy yet?

I got a sample in the mail, it's from Tylenol but especially formulated for back pain, so think they added a muscle relaxant. I threw it in my drawer, but pulled it out today thinking I just may try it.

Post Edited (dorri) : 2/20/2017 5:17:19 PM (GMT-7)

Posted 2/21/2017 12:45 AM (GMT 0)
Cry. Curl up on a ball on the bed and not move. Yeah I know not helpful. haha I have my bad days with the same problems. My doctor gave me some Celebrex to get through some joint pain I was having after I had weaned off of steroids and was still having some painful joints from withdrawals. However as I said I still have my bad days. Sometimes I use heating pads. I plan on asking for more Celebrex to take for really bad days (it is an NSAID, but supposedly not as harsh on the guts). I'm hoping he'll go for it. Since they don't want to give anything stronger to us.
Posted 2/21/2017 1:13 AM (GMT 0)
I have cried and tears are actually healing, at least for a bit.
In Sept, I had to go back on a low dose prednisone because I had the joint pain and felt like a truck rode over me and the DR. felt I had come off Prednisone too quickly? The General doctor put me back on low dose or where I cut off, 2 mg, and had me take that for a month, then one and a half mg for a month, then 1 mg for a month, then a 1/2 mg for a month, then stop. It takes a long time, but it sure eases the withdrawal symptoms.
With any stresses one's cortisol levels change, LoL, I probably need prednisone again.
Posted 2/21/2017 5:42 AM (GMT 0)
I had to do that too. Unfortunately I think I was just on steroids for too long that no matter how slow I went off I still managed to having some withdrawal symptoms. Like my body was having a fit that I wasn't on it anymore. So weird that even 1 mg would satisfy that for me. So once I went super slow and off there was nothing I could do but to get through it. It took a few months before I felt better from that. Now I can tell it's just the usual joint aches that come from this lovely disease. But yes, I'm sure prednisone would make me feel better right now. Such a love/hate relationship it is with that stuff!
Posted 2/21/2017 6:41 AM (GMT 0)
I have gotten pancreatitis as well from azathioprine. CT confirmed of long standing? The doctor says probably from the medication. Been on this med about 4 times. Once wasn't enough?
I took prednisone for many years. I went down to the usual 2.5 mg (breaking a 5mg tablet at the time, then I went cold turkey. I had withdrawal symptoms for a week, maybe 2, then I would get the sweats or heart race, shakes, occasionally after that.

I was prednisone free for 5 years, except for when I had a bad flare, where I took it only for 3-5 days, except the last time, I was stuck on it for 6 months. That seemed harder to wean off then the time when I was on it for years? Maybe the body has a memory on the prednisone dependency?
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