My poor son just needs a break, as I'm sure you can all relate to. He had an ileostomy Friday, the 18th. We came home on the 22nd and he was eating and doing well. On Thursday, he started to develop these blisters in his mouth. The doctor said it was a viral infection and it just had to run it's course (she said it wasn't Thrush). It's now a week later and they are all in his mouth and down his throat. Has anybody experienced anything like this?

When I had my first surgery which was actually emergency surgery since my colon ruptured, the doctor that did it left my rectum in because he didn't know my situation and wanted to leave it in just in case it could be saved.
So I had an ileostomy and my rectum in place just not hooked up to anything. Because my rectum was still in, the disease was quite active and I developed in my mouth and throat the same ulcers that were in my colon. I couldn't eat or drink and was coughing up blood. This necessitated the second surgery to be moved up and the remaining rectum to be removed and my J-pouch to be created.

I have no idea what your son's situation is and if he still has any part of his colon in or not but it's something to look in to. How they determined that the ulcers in my mouth were the same as those in my colon was by snipping a little part of my tongue out (lovely, I know) and stitching it up.

Hopefully it is just a viral reaction like the doc says and will get better soon. I know it's no fun. And I'm sure it's hard being a mother to watch your son suffer like that.

i had those mouth sores before i had the surgery, so while i still had UC. i asked my GI about them too, and he just said to let them be. it takes a couople weeks, but they do go away. i havn't had them since

I had a REALLY severe bout with them back before any of my operations. They took about 10-15 days to go away, and were really painful.

I get the occasional problem with them now, but nothing like that. I haven't had them for a long time (knock on wood), and I think they come back less after all the operations are over with.

Tell him to hang in there, and see if you can get him something that's referred to as 'the pink lady'. I had a pain specialist prescribe it. It is a drink that numbs your mouth and throat. It made the whole thing a bit more tolerable.

It's not uncommon to get ulcerations in your mouth, because it too is a part of the digestive tract. I have had them also, and I continue to get them. They will resolve themsleves however it may help to gargel with salt water.

sorry your son is so uncomfortable
definitely try the warm salt water gargle and try OraJel mouth pain relievers. They are a lifesaver.

http://www.orajel.com/products/adult/mouth_sores/ultra_medicine.htm
http://www.orajel.com/products/adult/mouth_sores/mouthsore_discs.htm

my son has them again!10 days now, dr ordered biopsy for the fist time
been told apthous ulcers, thrush, crohn's, none of that
treated with diflucan and lozenges
antibiotics, sugar and sress induced
more further down the pharynx than in the mouth
dr saw nothing

I had apthoid ulcers after my third surgery. They were one of the most painful things I've ever experienced, esp the ones in the throat. Felt like I was swallowing glass every time I swallowed.

I did have several in my mouth that were quite irritation and was prescribed apthosol paste to get temporary relief. You can't get it to the ones in your son's throat, but it might help with the mouth ones. THe best thing to do is dry the ulcer as much as you can before applying the paste (it will hold better). Since it covers the ulcer, it provides relief from the constant saliva and rubbing in the mouth area, esp when eating.

Chris has none in his mouth, just down the pharynx.

The last time my son had them in his throat, the ENT doctor prescribed liquid Vicodin. My son thought it even helped to use it topically.

Chris had that in the past, however, witht he previous dependency problems we believe it is not his best option. He takes ultram and that is even iffy.
It will be helpful to get the tissue biopsy and an accurate dx for once after 5 years of this.
It baffles the drs.

I had really bad sores in my mouth for months before my colectomy. I could barely eat or drink anything. I tried several different treatments but the only thing that gave me some relief was a kind of lollipop with morphine in it. I cannot remember the name though.

was it actiq?
fentanyl transmucosal. rots the teeth, only to be prescribed by oncologist for dying cancer patients. we found out the hard way.multiple issues then and now with the teeth.

Yes, it was actiq. I had no idea it was that risky.. I used it for 1-2 weeks and had no side effects.

Lucky for you. Chris didn't know and was on it for 6 months, increasingly more and went through detox, rehab and cold turkey for months.
Now, his teeth are riddled with cavities, every tooth!. He is getting a few done every few weeks.