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Mouth sores and Crohn's

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Posted 11/30/2009 9:19 PM (GMT 0)
I had my illeostomy surgery in August and was finally feeling manageable. Had some energy, and stoma wasn't hurting all the time. Back got better from unbelievable pain, and started eating some solid foods. Yeah!! 4 months next week.

Now gradually joints are starting to hurt a lot. Have to rub feet and hands with menthal stuff and use massage person regularly. Take tylenol arthritis 3 times per day.

Then my mouth got sores on inside and down the back of my throat so I don't even feel like eating or drinking anything. My energy is going down and feeling rather depressed about the whole thing. I know I have gone back to sleeping too little and trying to do too much for people and job ect.

Anybody have suggestions? Would getting more sleep help? I have tried to re-evaluate things I am doing. I am not on any meds at the moment but think I maybe need to see GI for something? Problem was no meds were working before.

Opinions appreciated.
Posted 11/30/2009 11:50 PM (GMT 0)
My initial presentation for 2 years was canker sores. Lots of them. Each one would eventually heal in about 2 weeks only to replaced with another. My dentist gave me some paste TRIAMCINOLONE which seemed to speed the healing time. Once I started getting treated for the Crohn's the canker sores have pretty much disappeared. Good luck and feel better!
Posted 12/1/2009 1:54 PM (GMT 0)
Just prior to my surgery in October of 06, I had sores in my mouth.  In fact, I had sores throughout my system.  I didn't eat or drink and became severly dehydrated.  My blood pressure went down to 60/40.  It was serious.  I strongly recommend you get yourself to a doctor soon.  Good luck.
Posted 12/1/2009 3:32 PM (GMT 0)
The mouth sores are definitely Crohn's related. I've never had them, but know someone who had them so bad they needed to be hospitalized and fed via infusion. Good luck with it, but Crohn's meds should help.

Frank R.
Posted 12/1/2009 3:35 PM (GMT 0)
Thanks for the information. I will call this morning and ask about Triamocinolone. May be a long wait unfortunately. I have been gargling with salt water and sometimes that eases things but it's nasty and I'm getting sick of it.

I can see how getting dehydrated could happen. Just don't want anything more to irritate mouth. Will definitely keep up the fluids.

Thanks to both of you.
Posted 12/5/2009 7:30 PM (GMT 0)
I also got terrible mouth sores after my ileostomy...my GI thought they were from acid reflx, even though I had no other symptoms, and 2 other dr.s thought they were canker sores from stress. It got so bad that I could hardly eat or drink.

I kept insisting to ALL the doctors I saw that I believed it was Crohn's in my mouth. After 3 months, and nothing helped, my GI finally agreed that it was likely Crohn's.

I started Humira and the sores went away (and stayed away). Have not had them since.

My regular GP prescribed me something he called "Magic Mouthwash." It does not help cure the sores, but it numbs them like crazy so you can eat and drink without any pain. It helped me until I was able to get the Humira. It is crazy-strong at numbing your mouth...! It was very weird the first time I used it, lol.

Good luck. Mouth sores are terrible because you stop eating and drinking, and feel even worse...! :( Feel better soon. :)
Posted 12/5/2009 11:55 PM (GMT 0)
I've had them, and the sore muscles as well. The solution that worked for me? B-12 pills. I still occasionally get sore muscles but it is once every few months rather then every day. My mouth sores were so severe they were down my throat as well. Again, I was really low with the B-12 and taking a pill once a day helped me enormously! Good luck.
Posted 12/6/2009 2:18 AM (GMT 0)
I have UC and also get horrific mouth sores and swollen tongue! Its a real pain. You can get prescription steroid paste to stick on them and I find that really helps!
Posted 12/7/2009 7:34 PM (GMT 0)
Trigirl - any changes?
Posted 12/9/2009 9:55 AM (GMT 0)
I used to get mouth sores, too.  However, when my colostomy was switched to an ileostomy, back in '04, they stopped.  But that was also the time I started on Remicade....so, who know's? 
Posted 12/9/2009 1:37 PM (GMT 0)
Thanks for the replies everyone.

Can't see Dr. until tomorrow, but have been trying to get more rest and drink lots and not eat sweets. I heard they made it worse.

Definitely feel like it's crohn's/stress related.

Family coming home for Christmas, parties to host and general overwhelmed feeling. Have to get a handle on all this.
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