For Chatter concerning pain

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JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2039
   Posted 3/31/2010 9:48 AM (GMT -7)   
Concerning your comments on pain: 
 
"Now i have pain in all my joints, the only pain free areas are the space between mid thigh and ankle. The rest of my body is always sore at one time or another and even my sternum and the left side of my jaw become inflamed and painful. DOES ANYONE ELSE HAVE THOSE PARTICULAR SYMPTOMS?"
 
Sounds so much like me.  When I have a flare, usually in the autumn, my jaws become inflamed.  My jaws are about the only joint on me that will actually be red from the inflammation.  I do have TMJD and that's probably why my Crohn's arthritis settles there sometimes.  Crohn's arthritis can skip around to different joints, but my arthritis has settled into certain areas, most likely because I've had injuries and I'm probably dealing with osteoarthritis to boot. 
 
I can barely sit on my rear in a chair anymore, which is why I have staid off my computer for most of two years, but some of that is nerve pain from surgery.  Sitting in church on a bench (those cushions sink down to the hard oak underneath) is an exercise in suffering for me!
 
My jaw pain is the only pain that has caused me to take demerol (except when I've had surgery or such).
 
I can tolerate moderate levels of pain, but mine went past moderate about 6 years ago. 
 
You are not alone!
50 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.  Severe depression past two years.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/31/2010 11:21 AM (GMT -7)   
Hello JaSanne,

I am so sorry you are in so much pain. I had a horrible time after abscess surgery and couldn't sit for many months. When I was finally able to got out, I was thankful that my church had a reclining easy chair in the sanctuary. A member had severe back pain, but she moved away and left the chair for me. At first it was awkward being the only one in a recliner. But it was comfortable. Now I wish all the seats were recliners! The recliner is reserved for anyone who needs it and it gets used often.

Take care.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


chatter
Regular Member


Date Joined Oct 2009
Total Posts : 51
   Posted 3/31/2010 1:27 PM (GMT -7)   
Thanks JaSanne,
There is so much i don't know about CD but by listening to everyone on the forum, suddenly all the problems i have had start to make sense. I was diagnosed with UC for the last 28yrs and only recently diagnosed with CD. Since my first surgery 15yrs ago i have been waiting for the moment when all my symptoms would disapear, now i know why they didn't. Very glad to hear that all my joint pains and in particular the jaw pain can be attributed to CD. I have been telling them for years but nobody suggested that it was a symptom of IBD. My jaw is painful all the time now and is particularly painful, hot and sore to touch if i lie on the side of my face. Trying to open my mouth is really difficult and painful.
I was told a few years ago that i have osteoarthritis in my neck and lower back, and yes it is all so very much worse when my bowel is flaring, which is a lot of the time but to varying degrees. Wow, we all seem to suffer from the same group of symptoms, when your the one struggling, you feel like its just you, so its so good to realise your not alone. Well, thanks for your comments, you really have been helpful, makes me feel like going forward and pushing to make my life more comfortable. Speak soon. Teresa

Grandpato2
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Date Joined Dec 2009
Total Posts : 681
   Posted 3/31/2010 11:26 PM (GMT -7)   
Very interesting I had my tmj fixed when I had my top teeth out. My jaw used to lock open and I had a devil of a time manipulating it to close, then it would be sore for days. I have crohn's arthritis mostly in my hands (especially the fingers) and my feet and knees but as JaSanne mentioned these pains travel around unpreditibly. Sometime just one small area of a bone feels like it just broke but only lasts for 10-15 minutes, man does it hurt I can't even touch it.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2039
   Posted 4/1/2010 8:46 AM (GMT -7)   
Thanks for the comments all. My arthritis became my biggest source of misery about 7 years ago even though my gut is better at the moment than it ever has been. I'm grateful for that. I have ongoing muscle spasms and have to take a muscle relaxer (baclofen) daily, so sometimes I wonder if I'm not dealing with another autoimmune disease. Been tested for lupus, which was negative.

I love the easy chair in church idea! I started a stool movement at church when I brought a small Rubbermaid stool for my legs because of my back pain. I'm short and my feet don't touch the floor without it. This church, God bless them, ordered pews that are taller than average! Anyway, I was laughed at (so much for compassion), but eventually about half a dozen or so stools started popping up, mostly elderly ladies, so I'm not alone! Sometimes it pays to be willing to be laughed at. But I doubt I could get by with the lazy boy. I'd probably have everyone wanting to sit in it ;-)
50 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.  Severe depression past two years.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/1/2010 9:58 AM (GMT -7)   
JaSanne,
Having shorter then average pews ends up killing your feet/knees/hips/spine, and there are no padding on my pews or kneelers (but at least the short people have a built in stool in the kneelers.) It has gotten so bad that I had to stop going to church for while.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 4/1/2010 11:14 PM (GMT -7)   
I doubt God would mind that you needed some comfort. Bring a cushion to church!!!! Sit on it,Kneel on it!!!!!!
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

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