Posted by: @glenn-giroir

I was just wondering how many of you IBD-ers out there suffer from joint pain

I do, for quite a few years now.  My rheumatologist couldn't help because I get pain without inflammation and it flares up significantly after some vaccines. ☹

IBD with joint pain is common, unfortunately. 

My father suffered from rheumatoid arthritis-like  symptoms in his hips for most of his life.  He would flare so badly that he would be bedridden for a week sometimes.  He also had digestive problems, and I'm convinced he had undiagnosed IBD.  He was not one to see doctors often or admit he was in pain or having symptoms.  

Aren't autoimmune diseases wonderful?  I'm pretty frustrated right now.  I was hopeful that my joint pains were in the past after the removal of my diseased colon, but here I am at 2am typing this because I cannot sleep due to the fact that my hip is throbbing so badly.  😖     

@veganostomy Thanks, Eric.  Yeah.  I've suffered from mystery roaming joint pains all of my life.  Drs pretty much have scratched their heads over it until I was diagnosed with IBD, then it seemed to make more sense.  Unfortunately, like you, I'm yet to get a diagnosis or treatment that helps other than take it easy until the symptoms abate.  

Hi Glenn.

    I have (not) enjoyed joint pain for most of my life. I've never been overweight and have always been active. I never thought about a connection to my ulcerative colitis until the year before my colon was removed. The six months before my colectomy when my colitis was out of control. My lower back, neck, knees, ankles and shoulders where the worst they had ever been. The pain and inflammation got so bad in my ankles that  I couldn't walk. My rheumatologist xrayed my joints and did quite a few blood tests. He couldn't find a clear reason for my pain. He said there could be a connection with my colitis however there could be other causes too. Also by the time I was able to get in to see him, my joint pain was getting much better which, I was told, made it harder to diagnose.

     Since my colectomy I haven't had any joint pain like before. Just minor pains from being a 66 year old active guy. I've only been with out my colon for nine months now, so I guess I'll see over time how it all works out.  

    I hope your pain can be diagnosed and treated so that you can get back to what you love. BTW, I've been up Longs peak more times than I can count.   ~BOB

My issue is probably pericarditis. ( long before Covid ) Every day at work, starting about noon or earlier. I get to suffer what feels like an ongoing heart attack for the rest of the day. First time I thought it was a heart attack. But my heart is actually in great shape. Two recent rounds of Prednisone gave temporary relief. Will be seeing the Doc again in January and see if we can work out something more permanent.

But it did happen occasionally for decades. I thought it was some sort of cramp in my chest muscles back then. It would be short lived and very long between episodes.

@glenn-giroir  ...I'm sorry to hear this is being a testy time for you all!  I've been awake most of the night with joint pain. Back in late 2007, my year in Hospital, I  met a very busy "Pain Specialist".   She spent ten min. in the room with me after going over my file &  med. reports &  she promptly started me on the Fentanyl pain patch. I was started at the lowest dose possible in Hospital under great watchful eyes. When I left the hospital I was on a 100 mcg. Dose. I have been as low as 50 mcg. & presently on 75 mcg. dose for 3 yrs now. Instead of raising the dose back to 100, I take tylenol for break through pain instead. Tylenol can be  so temporary. 

Over the years, my GP has been on board with me lowering the dose & raising it back up as needed  depending on however long a bout was without the high extent of pain. I was told arthritis in my young adult life, first in my toe joints & ankles, moving around settling in my hips & lower back & my shoulders... lol, well let me just sum this up, any joint connected to my already cranky torso! Lololol!!   You can even throw my eye Inflamation in there.  

The only times I have been overweight was when I was Type 2 diabetic for 8 months but but since am clear due to  my change in diet. Thank you salads & the veggies I love so much. 

I had to learn to chew with my fork down & yes,  even cutting veggies differently made a difference. The other time was my sleepy thyroid (Hypothyroid), it needs meds. to stay awake. I am typically an active person even when dealing with severe Amemia unless the dizziness is highly present. I start iron infusions today again. 

It was shortly after my hubby died that an MRI revealed the nasty Ankylosing Spondylitis. Such a fancy name eh?!! Lol!  The Fentanyl Patch seems to handle most of the pain but the night before a new patch I am very aware of the need for the new one. They are worn for 72 hours. For years only my immediate family knew I was on Fentanyl because of the street drug situation & deaths with bad fentanyl, I just didn't need the criticism, plus a neighbour kid caught for B & Es several times. Consider yourselves in my trusted group.  

I find the weather changes affect my pain & the minus temps & snow we get here in the mountains can be brutal at best.  You ever so kind Ostomates may want to journal your pain for a while & see what you can tie into weather changes.  I plan my days differently based on weather now &  because Tylenol can be hard on the liver. I'll avoid esp. vacuuming or washing floors & the heavier yard/garden duties.  

**Eric, do you rember the words you used to describe this all over Inflamation some of us get to experience?? They were wonderful words that finally shut my critical family member up. Lol! 

I know...

Extra Intestinal Manifestations!!

I believe those were the words you used to describe all this wide ranging Inflamation. 

Before I got my ileostomy I had a severe iron deficiency and was diagnosed with pitting edema. Most of my joints hurt badly and I was prescribed a steroid called prednisone which resolved this ailment. I believe I got ulcerative colitis from self medicating with aspirin and ibprofin. Even though this was an unfortunate accident im doing well now. I hope this information helps, take care

Bit of a late reply (sorry) but hopefully my history is useful!

I have an ileostomy as a result of an undiagnosable bowel disorder (looks to be in the same genetic family as Hirschsprung's) which effectively made my large bowel downwards give up.

I also suffer joint issues which I got referred to rheumatology, and it got concluded as an undiagnosable (again) connective tissue disorder in the same family as EDS & Marfan's.

According to my specialist, CTD's can have multiple effects upon vital organs and especially common are bowel issues due to the tissues that make up the intestines. Might not be whats going on with you but just food for thought if you were looking to get seen by a specialist (if you're double jointed then it's potentially extra likely to be in that region of disorders).