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Crohns Colitis extra intestinal issues and questions

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Crohn's Disease
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Posted 2/21/2012 3:02 PM (GMT 0)
So I usually post to the UC forum, but as my dx might be changed to Crohns colitis and I have had some, ah, wild times recently, I thought I would post on here. Hopefully this doesn't get too long..

about a month ago, I started getting sores in my mouth and throat. I might have had then a bit in the past, but such a minor issue I never really thought about it, but these sores just got worse and worse. I showed my GI, which is why he is reconsidering my dx of UC, he gave me lidocaine rinse(wow, that stuff is bad, btw), and found out my CRP and stool cal protein were both elevated. At this point he doubled my Cimzia dose(no GI issues at all at this time).The mouth sores started to affect my appetite as I just couldn't handle certain foods without pain.

about two weeks ago, I got what seemed like another sinus infection(I have chronic sinus issues), but it got really bad really fast and then my face started swelling up. By this time, I pretty much stopped eating and drinking b/c of the mouth and throat sores and whatever sinus thing I had. After another really bad week that involved two ER visits I was finally admitted to the hospital. Lots of IV fluids and antibiotics helped my sinus/face issues after a couple days, but the mouth and throat sores still were intolerable even with pain meds(that I couldn't really tolerate due to no food in my stomach). Saw several different specialists, lots of tests, nothing conclusive, finally think its just extra intestinal complications of IBD and severe mouth and throat sores.

Prednisone finally got sores under control and I hope to get out of the hospital today after being here for a week.

Has anyone experienced anything like this? Any feedback would great, now that this is Crohns, I feel like I have a lot more to learn.
Posted 2/21/2012 3:33 PM (GMT 0)
Yeah...sounds like Crohn's...sorry! I've had the mouth ulcers, but never as bad as you have described. I hope you feel better soon!
Posted 2/22/2012 4:44 AM (GMT 0)
Yeah I have the same issues. I have mouth/throat ulcers that are si bad they are bleeding...But they've blead continuously before so I'm not complaining! I would go on a liquid diet for the time being just to give the ulcers a rest.

I have never had sinus issues but I do now that I'm on Humira. I have a Kidney & sinus infection right now and I think Humira is causing it. I see you haven't taken any immunosuppresents but has your doctor prescribed you any recently since saying he thinks you have CD? If so, I'd bring up the bad sinus issues.

Watch out for arthritis! It was my first symptom but since you are getting all the other external 'presents' the disease gives I wouldn't be surprised if you developed Arthritis caused by the CD.

Get well soon & welcome! =)
Posted 2/22/2012 5:39 AM (GMT 0)
Thanks for the replies. Really hoping I never have mouth and throat sores again that bad, absolutely brutal. What do you all do for the ulcers? Lidocaine just makes me throw up, they gave me stomatitis cocktail in the hospital, kind of helped, kind of made it worse, only thing that helped was a short 5 day course of pred.

keepingfaith, I was pretty much on a liquid diet at home, but it got worse as the sinus stuff kicked in and I just didn't care about eating, too much pain all around. I was on immunosuppressants in the past--Imuran in 2007 and 2008 but my white blood cell count got really low and took forever to get back up, sending me to checking for lymphoma(didn't have it thankfully) so they said no more Imuran or 6-MP ever for me. I was on Humira for about 5 months last year, did nothing. The only thing that has changed is that my dr doubled by Cimzia dose, hopefully that starts to keep all this in check.

I had sinus problems off and on forever, but in the last year they have been really bad, been treated for sinus infection at least 5 times. During that time I have been on entocort, Humira, prednisone and now Cimzia and I do think it contributes to sinus issues among other things, since all those drugs make it harder to fight off infection. I have the added bonus of having a deviated septum in my nose, so sinus surgery is in my future as I am sick of this cycle, I have had a cold or sinus infection of some kind for I swear over a year.

Sorry to hear you have both a sinus infection and a kidney infection--that sounds brutal!

I certainly hope I don't get arthritis, I have certainly been asked about joint pain about a hundred times in the last week, and I have always been an achy person, but its hard to define it as pain per se.

I am definitely interested to know more about other external 'presents' as you put it people experience with Crohns.
Posted 2/23/2012 4:00 AM (GMT 0)
sinus/mouth/throat ulcers--This has been a problem for me..I had all the extras constant UTI's and kidney stones, gall stones, severe joint pain, swollen lymph nodes, gastritis, esoph. spasms and irritation--CD is an equal opportunity offender..If I even go into a mild flare period, the first thing that happens is I get sores in my mouth.. smhair

Cindy
Posted 2/27/2012 10:31 PM (GMT 0)
Through blood tests and elimination diets I found out that when I cut out casein (milk protein) from my diet my mouth sores went away completely. After several years of that diet I went back to a regular diet and then a few months after that started humira. I don't know if the mouth ulcers would have returned if I hadn't started humira but I will find out now as I am going off humira and eat a regular diet. Since I haven't had a 100% diagnosis of crohns some might say my situation doesn't apply and that may be true but its an easy thing to try. You are in complete control of what you put in your mouth and cutting out dairy for a period of time isn't going to hurt. I still drink enriched (calcium and vitamins) rice drink even though I do have some milk protein in my diet. Maybe just that combo keeps them at bay, (or maybe its humira) who knows. All I know is that I love it becausee they are the WORST, total misery. The only thing that helped me when I had them was a steroid mouth rinse As hard as I tried not to swallow any of it some must have gotten down because it always gave me a stomach ache for a short time after rinsing.
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