Skip to main content

I've had my pouch since 1995 and have had arthritis for at least the last 20 years, mostly on and off pain in my SI joints (hips). I think it may be related to the inflammation from pouchitis that I often have. Does anyone else suffer from arthritis? In the times I've been on antibiotics to get rid of pouchitis my arthritis tends to be better, but it just comes and goes all the time and is hard to predict and get under control.

Replies sorted oldest to newest

I had my s-pouch surgery in 2001. I am also an ovarian cancer survivor diagnosed in 2013. In the last couple years, I am 65 yo, my arthritis has become more prominent. I have off and on issues with my lower back and neck. Arthritis in the hands runs in my family, and I am left handed, so my pointer and middle fingers are permanently bent at the last joint. I had COVID, and after that I seem to have developed a sternal arthritis, that also comes and goes.  I am a great weather predictor, as I seem to have more issues when weather fronts come thru. I am a retired pharmacist and have kind of tried a lot of over the counter stuff for help with pain control. I don’t take oral NSAIDS due to them giving me some GI bleeding in the past. I take Tylenol, and use topical lidocaine patches or gel, and once in awhile the topical Voltaren gel, if the lidocaine doesn’t seem to help. Don’t know if the arthritis is hereditary, due to UC, or result of chemo or COVID.

V

Yes, I have migratory arthritis that comes and goes.  I get it mostly in my hands, but also in other major joints.  I have noticed an increasing feeling of malaise when I have a flare.  I try to manage it with ibuprofen (as little as possible).  I am very active (running, walking, yoga, light weights).  I worry sometimes that it may cause some nerve damage as I occasionally experience tingling in my hands.  I really don't want to go back on biologics or steroids, so I have avoided seeing a dr. about it.  Starting to wonder if it may be time to take some action though.  I can't seem to connect the flares to anything in particular, so it is hard to imagine how to prevent them.  I've tried a few supplements, but I can't seem to be consistent in taking them after so many years of being on meds prior to surgery.  (Full colectomy with j-pouch in 2012).

B
@BethT posted:

Yes, I have migratory arthritis that comes and goes.  I get it mostly in my hands, but also in other major joints.  I have noticed an increasing feeling of malaise when I have a flare.  I try to manage it with ibuprofen (as little as possible).  I am very active (running, walking, yoga, light weights).  I worry sometimes that it may cause some nerve damage as I occasionally experience tingling in my hands.  I really don't want to go back on biologics or steroids, so I have avoided seeing a dr. about it.  Starting to wonder if it may be time to take some action though.  I can't seem to connect the flares to anything in particular, so it is hard to imagine how to prevent them.  I've tried a few supplements, but I can't seem to be consistent in taking them after so many years of being on meds prior to surgery.  (Full colectomy with j-pouch in 2012).

I'm similar to you in this (active lifestyle, arthritis that comes and goes).  Just yesterday I scheduled an appointment with the rheumatologist that my colo-rectal surgeon recommended.  Can't get in to see that one until December!  I'm not sure what that doc has to offer, but colo-rectal one thought the rheumatologist had knowledge of the link between ulcerative colitis (which I used to have but tested negative for recently), psoriasis, and arthritis.  She also thought he could do tests and maybe even prescribe something helpful.  I am dubious, but I will still give it a go.  I have had the joint aches which started in my elbows and fingers about 10 years ago.  I have had little dry patches on my skin for as long, and started developing a psoriasis-like scalp itch this year.  What supplements did you try for arthritis?  I take turmeric all the time in my morning beverage just because I like it, but it's supposed to have good results for joints.  I wonder if they'd be worse without it?  I'm also a green tea drinker.  Green tea was recommended as a preventative to pouchitis.  My pouch gets a little irritated when I have bad things (especially, too much sugar), and then I have found oregano oil capsules 2x/day for a few days helps to treat that.  The jury is still out on CBD.  Topical magnesium has seemed to help with joint aches and muscle stiffness: sprays, epsom salts baths.  All these things I will continue as I wait for the rheumy doc.  I would prefer to address this issue with dietary and lifestyle changes and not some crazy, intense, side-effect heavy pharmaceutical, but I am curious about what is out there.  I'd be curious to know if any pharmaceutical has helped anyone in this group who has these three conditions. 

SM

Advil and celebrex are the only things that help my arthritis, but I try not to take them too much because they're not good for the pouch. I've taken all sorts of supplements (turmeric, pro resolving mediators, cherry juice) and nothing really helps. I stopped eating dairy a while ago but now I'm not sure if that even makes a difference. I'm hoping that when I go back on Flagyl that my arthritis goes away. I just took Flagyl for 2 weeks but then found out I still have severe pouchitis, so I am going back on it for 4 weeks. I hate the bad taste in my mouth it gives me though.

A

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×