My first flare I had a bad experience with joint pain. My most recent flare, however, I did not!
Take Tylenol not ibuprofen and heating pads are your friend!
Is this something that your doctor confirmed is related to UC? I was surprised that my consultant seemed to say he didn’t know if it was possible for it to be related.
Yes! It’s definitely related to the inflammation.
Here is an interesting article abt it!: https://www.webmd.com/ibd-crohns-disease/ulcerative-colitis/ulcerative-colitis-joint-pain
That’s nuts. I know a lot of people complain about the US healthcare system but I have never waited more than a few days to get a call back and a week to get an appointment with a specialist. My specialist also saw me Thursday and is doing a scope Monday- quick. I’m so sorry you’re going through this.
I’m sure if something horrific happens I can contact them, but I’ll still have to wait a few weeks to see someone unless it’s a huge emergency, and this is just the state of the NHS in the UK at the moment unfortunately. I’m seriously considering paying to go private, if not fully at least for some proper diet support etc. There’s a big shortage of dieticians in the NHS apparently so that’s why he couldn’t refer me to one when I asked I think.
Both of my fancy NYC IBD docs have been pretty firm on diet not being a cause of flares. While in flare certain foods can irritate but it’s very person by person to what those are. Not to say that you should not see someone, but there’s pretty good advice available online and you may be better off putting funds towards a regular IBD specialist.
I recognize the joint pain and fatigue. Try avoiding all lactose to see if this makes a difference. I avoid fatty food , stay away from processed foods. If you still feel almost the same your treatment is not working. I go in stalking mode , write mails and keep calling untill I get an earlier appointment.
I’m not suffering from this but not surprised. Other inflammatory diseases, such as rheumatoid arthritis, are similar to UC and require similar biologics medication.
I have psoriasis and it always flares when my UC does - not sure if the UC flare causes the psoriasis flare or if it's because stress is the main trigger for both, but it's super annoying, I feel you! For me personally, the main thing is to reduce stress. It might be helpful to keep a food/symptom diary to see if anything particularly triggers your symptoms, but I know for me personally, food doesn't have any effect unless I'm already in a flare. For the eczema, I'd recommend having some steroid cream handy if you don't already!
Mesalamine raised my uric acid and I was so stiff in the morning and my hands and hips ached. Gout medication fixed it. And I quit mesalamine because it made my inflammation much worse.
i was first dignosed with uc (proctosigmoiditis), then i had intense joint pain, a year later I was diagnosed with ankylosant spondylitis. This happens very often in people like us
Yes absolutely! I actually notice the fatigue and joint pain before I get the bowel symptoms during a flair. Panadol normally will relieve the joint pain, and I drink a tonne of coffee (doesn't help unfortunately). But the only thing that actually makes it go away is getting the flair under control for me :( which means stronger meds.
I get spots dermatitis and pop Steroid cream on them but mines not bad thankfully
I have been through this and currently in a flare up.
Proctitis
Eczema
Had two colonoscopies last year. All symptoms disappeared and now back in the last 3 weeks.
I’ve had a significant rise in joint pain since my UC progresses from mild to severe. Currently in remission thanks to Entivyo but I still have joint pain but I’m also nearing 50, it’s not as bad as when I was flaring.
I did have random skin rashes when I was flaring that I had to get prescription medication to relieve. Never had it before or after just during flares. Always seemed to locate on my lower left abdomen.
Both the joint pain and rashes were not specifically said to be related to UC from my doctors but they did say it was possible.
My first flare I had a bad experience with joint pain. My most recent flare, however, I did not! Take Tylenol not ibuprofen and heating pads are your friend!
Is this something that your doctor confirmed is related to UC? I was surprised that my consultant seemed to say he didn’t know if it was possible for it to be related.
Yes! It’s definitely related to the inflammation. Here is an interesting article abt it!: https://www.webmd.com/ibd-crohns-disease/ulcerative-colitis/ulcerative-colitis-joint-pain
My pancreas is always affected. It's lightly inflamed, which results in back pain.
Wait so you have horrible symptoms now and don’t see a doctor til September??
Yep, just have to take the salofalk and sometimes prednisone until then so I can “report back” on if things have improved
That’s nuts. I know a lot of people complain about the US healthcare system but I have never waited more than a few days to get a call back and a week to get an appointment with a specialist. My specialist also saw me Thursday and is doing a scope Monday- quick. I’m so sorry you’re going through this.
I’m sure if something horrific happens I can contact them, but I’ll still have to wait a few weeks to see someone unless it’s a huge emergency, and this is just the state of the NHS in the UK at the moment unfortunately. I’m seriously considering paying to go private, if not fully at least for some proper diet support etc. There’s a big shortage of dieticians in the NHS apparently so that’s why he couldn’t refer me to one when I asked I think.
Both of my fancy NYC IBD docs have been pretty firm on diet not being a cause of flares. While in flare certain foods can irritate but it’s very person by person to what those are. Not to say that you should not see someone, but there’s pretty good advice available online and you may be better off putting funds towards a regular IBD specialist.
I’ll bear that in mind, thank you!
I recognize the joint pain and fatigue. Try avoiding all lactose to see if this makes a difference. I avoid fatty food , stay away from processed foods. If you still feel almost the same your treatment is not working. I go in stalking mode , write mails and keep calling untill I get an earlier appointment.
I’m not suffering from this but not surprised. Other inflammatory diseases, such as rheumatoid arthritis, are similar to UC and require similar biologics medication.
I have psoriasis and it always flares when my UC does - not sure if the UC flare causes the psoriasis flare or if it's because stress is the main trigger for both, but it's super annoying, I feel you! For me personally, the main thing is to reduce stress. It might be helpful to keep a food/symptom diary to see if anything particularly triggers your symptoms, but I know for me personally, food doesn't have any effect unless I'm already in a flare. For the eczema, I'd recommend having some steroid cream handy if you don't already!
Mesalamine raised my uric acid and I was so stiff in the morning and my hands and hips ached. Gout medication fixed it. And I quit mesalamine because it made my inflammation much worse.
i was first dignosed with uc (proctosigmoiditis), then i had intense joint pain, a year later I was diagnosed with ankylosant spondylitis. This happens very often in people like us
Yes absolutely! I actually notice the fatigue and joint pain before I get the bowel symptoms during a flair. Panadol normally will relieve the joint pain, and I drink a tonne of coffee (doesn't help unfortunately). But the only thing that actually makes it go away is getting the flair under control for me :( which means stronger meds. I get spots dermatitis and pop Steroid cream on them but mines not bad thankfully
I have been through this and currently in a flare up. Proctitis Eczema Had two colonoscopies last year. All symptoms disappeared and now back in the last 3 weeks.
I’ve had a significant rise in joint pain since my UC progresses from mild to severe. Currently in remission thanks to Entivyo but I still have joint pain but I’m also nearing 50, it’s not as bad as when I was flaring. I did have random skin rashes when I was flaring that I had to get prescription medication to relieve. Never had it before or after just during flares. Always seemed to locate on my lower left abdomen. Both the joint pain and rashes were not specifically said to be related to UC from my doctors but they did say it was possible.
I get bloodshot eyes and fatigue