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I had my pouch surgery in 2006 and have had multiple issues since. I was diagnosed with Rheumatoid arthritis in 2007, with severe joint pain. It was very atypical though and I never completely fit in the box. I went into "remission" for about the past 3 years and lost a lot of weight as well. I recently flared again, it started in my hip, then moved to my knees. Then my mouth broke out in mouth sores. Long story short, I have gotten a bout of mouth sores 3 times in the last 6 weeks. I have gotten my joint problems under control with medication, but these mouth sores are so painful and keep coming back. Anyone ever experienced this? My rheumatologist says it is more like UC symptoms. But I just figured since my colon was gone, I didn't have UC anymore. I Feel kind of stupid now lol.

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Yes, unfortunately one autoimmune disease can leave the door open for another to develop. Sorry about your RA. My mom has it and I know how debilitating it can be. She's on Remicade for it and that helps her a lot. I always thought mouth sores were more in line with Crohn's disease. I never had them with UC. Are you on any immunosuppressants?
mgmt10
Although many doctors still insist otherwise, I think most of us here are in agreement that colectomy is not a cure for UC, just a very effective treatment. Jan has AI arthritis too and uses Simponi to manage it -- if the mouth sores are autoimmune in nature, I would imagine that a treatment for the arthritis might help with them too. What are you using for the arthritis now?

Just a long shot, but if the mouth sores aren't autoimmune, they can sometimes be the result of a folate deficiency. Lord knows we tend to have some strange nutritional deficiencies so it might be worth having a simple blood test to check. If by any chance you're on methotrexate for the RA, this is even more likely.
P
I know this is a wishy-washy answer, but my opinion is that it depends. Some extraintestinal manifestations of UC tend to resolve with colectomy, others do not.

For example, peripheral arthritis associated with UC (the type that tends to hit one joint at a time) tends to improve with colectomy. The form of ankylosing spondylitis associated with UC (enteropathic arthritis) has a course that is independent of colectomy, and can occur decades before the disease or decades after colectomy. Rheumatoid arthritis is unrelated to UC, as you need to be RF positive to get it. Colectomy would have no effect one way or the other. The types of arthritis I mention above are seronegative (meaning that there are no positive results for RF).

Mouth (aphthous) ulcers are sort of common with active UC, but more common in Crohn's. They should improve after colectomy. But, the rub is that if you have chronic pouchitis, cuffitis, etc., they could still occur. Plus, they occur in the general population.

That said, folks with any type of autoimmune disease are at greater risk for other autoimmune diseases. I suppose you can say that it is an innate weakness in your general make-up. Not terribly encouraging I know...

My mantra has become to accept and adapt the best I can. I don't like the alternative Roll Eyes

Jan Smiler
Jan Dollar
I've been getting mouth sores (aphthous ulcers) for twenty years now. I had the J-pouch surgery back in 2010 and while it did wonders for my colitis / crohns, I still get them. Here's my best advice:

1) best medicine: oral dental paste triamcinolone acetone) right before you go to sleep. Put a dab on the sore and it speeds healing.

2) Orajel Mouth Sore Toothpaste seems to really speed up healing. I've noticed that the peroxide heals the sores faster as there seems to be a bacterial component to these sores that increases healing time.

3) Squiggles Flouride & SLS Free Tooth building toothpaste works great. SLS is a detergent that is notorious for causing mouth irritation.

4) Many may not like this but when mine have gotten really, really bad in the past, the ONLY thing that really speeds up healing and stops them dead in their tracks are cigars or cannabis (in those states where it's legal of course Smiler. I'm not sure the mode of action but tobacco smoke seems to almost have a cauterizing effect on aphthous ulcers - either that or the smoke changes the pH, flora in the mouth and makes the environment inhospitable to the bacteria that worsen the sores. Two days straight of smoking cigars (NOT inhaling) is enough to reduce recovery from 12-14 days to 2 or 3.

Now I know that there is a risk here of mouth cancer with smoking cigars so I don't advise doing this on a frequent basis. But when they get unbearable, it's my way of nuking them. Also, consider that recurrent wounds in the mouth may by themselves leave you (me) more vulnerable to cancer so I've always seen it as damned if you do, damned if you don't.

Hope this helps.
D
Last edited by DeathStalker
I have no colon (no jpouch yet...long story) and since having my colon removed I've developed horrible arthritis.

Before being dx'ed with UC, I had horrible apothous ulcer outbreaks. I have one right now with about 30 sores. I can't eat/drink. It sucks.

I've used a magic mouthwash in the past. It's lidocaine, diphenhydramin, and pepcid that you mix around in your mouth. I get it from my dr. It helps keep down inflammation and the lidocain is a nice pain killer.

I just had something prescribed that's some sort of cellulous mouthwash that supposed to settle on an protect the ulcers? I haven't fill it yet so I will let people know how it goes.
A
I went to a rheumatologist at Cleveland Clinic. She saw the vaginal ulcers I had (and my previous bloodwork). I went over my arthritis issues, mouth ulcers, and pydoderma gangrenosum. Her determination was that I extra-intestinal manisfestations of IBD. Even though vaginal ulcers are rare for UC.

Given my recent psycho surgical complications recently, my surgeon's want me rechecked for Bechets. Although that's not the most likely candidate. I'm going to need to have a rheumatologists input anyway for my arthritis issues and I'm not a good candidate for Humira anymore.
A

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