Help! Mouth ulcers, extreme fatigue. Time for a new GI?????

[Angie3160]

Hi All,
I'm new to forum but not Crohn's disease. Need input from fellow patients.
I was diagnosed in Dec. Of 2000. Over years had numerous obstructions, hospitilizations etc. I've grown accustom to the intestinal manifestations of the disease, but other side effects are horrible. 2 major complaints are ulcers/mouth sores. I have these flares at least every other week. My tongue on the sides, top & under, along with inside of cheeks, ESP. Around lip lining around teeth break out with painful white ulcers and my tongue literally looks like someone took a knife to it and made slices everywhere along with dozens of red bumps.(sorry for gross details)
Problem #2, exhausting fatigue (would live in bed if possible)
My GI Drs approach is he treats intestinal problems and that's all. His theory being when disease is in remission all other problems go away. This is Not true in my case. When I asked if there was anything he could do to help mouth sores and fatigue, his answer was a very quick and blunt NO. Over holidays, I was at my moms, having horrible mouth outbreak. She let me try some dental paste, think it was called oralone, overnight my mouth not only felt better but 75% of sores were greatly reduced.
I had a small bowel resection at terminal ileum 18 months ago. Dr took out approx. 2 feet. Thats when fatigue seems to have gotten much worse. He recently did a CBC, receptionist called and said everything looks fine, that's it.
As I've read on this forum, many seemed to helped with B12 injections, my dr has never mentioned this. I guess by my blood work looking fine, he never mentioned anything. But when I look at side effects of anemia and fatigue caused by illness, I have all of them!
Thanks to all who took time to read this. I would appreciate anyone else's input. So does your GI Dr offer help with other effects of Crohn's? My internist acts the same way. When I asked about dental paste, you would've thought I asked for Crack or something and he refused.
I've been on many crohns meds over the years, meds for me were worse than disease. I'm supposed to be going on Humira in near future, but terrified of the immune suppressant aspect. I work with Sp,Ed students at a high school and they come to school sick constantly. I've already been reprimanded this school year for excessive absences.
I feel as if I'm between a rock and a hard place and there all alone!!
Thanks again!

 

[cheerfull]

Hi Angie
Beofe I was diagnosed with Coeliac Disease (40 yrs ago) I also had chronic mouth ulcers just as you describe - tried many things inlkuding antibiotic mouthwashes, oralcort etc. Eventually my dr decided to put me on Folic Acid and Iron which helped somewhat. He sent me off to a gastro spec who after tests diagnosed me as Coeliac (back then there was very knowledge about the disease) and once on a Gluten free diet I have only very rarely got mouth ulcers. So a Gf diet might help.

 

[Jennifer]

Hi Angie3160 and welcome to the forum! Sorry for the late reply.

Yes my GI does test my vitamin levels. CBC does not test them. You have to have all vitamin levels checked off on the lab order. Either your GI or GP can test them all. If both refuse then it you need both a new GI and GP as they clearly aren't treating you properly. Feel free to check out the forum's wiki entry on Vitamin and Mineral Deficiencies. I wouldn't just check iron and B12 but everything else. I had less bowel removed than you and I get B12 injections every other month.

Only mouth issue I've had is canker sores and I treat them with salt but if sounds like you may not benefit from that. Its very likely you may need to go on some sort of medication to help keep that from happening. Humira may help but I know you're concerned about possibly getting sick a lot. Feel free to check out the Humira subforum: http://www.crohnsforum.com/forumdisplay.php?f=59 and if you like you can make a new thread asking how often others get sick while on it. I didn't take it for very long so I'm not sure but I did take 6MP for a long time which is another immune suppressant and I did not get sick more often at all (I used public transit and was going to school so was around plenty of sick people).

 

[Angie3160]

Crabby,
Thanks for your reply. I consider myself fairly intelligent, but when I google info about what tests are needed to show if B-12 and other vitamin levels are low, I get more confused than ever! I think it is time for a new GI Dr, one with a little compassion about issues not just related to intestines would be nice! I will definitely check out the links you suggested. I'm still learning my way around this forum. I also take Clonopin for anxiety/panic, that seems to come with Crohn's territory often.
Thanks again!!

 

[Jennifer]

Angie3160
Indeed anxiety and depression are common and being deficient or low in certain vitamins can actually cause depression which comes hand in hand with anxiety so it could very well be related to a vitamin deficiency. Even being low can bring on symptoms of a deficiency so keep that in mind when you get results back.

We also have a mental health support section on the forum so feel free to check that out anytime: http://www.crohnsforum.com/forumdisplay.php?f=77

I used to take Klonpin but recently switched to Xanax to try it out. Klonopin seems to last longer where Xanax kicks in faster. Yet for panic attacks faster is always better to me. There seems to be a fair amount of people on the forum who deal with a panic/anxiety disorder.

 

[flowergirl]

I used to get horrible mouth sores. Remicade and topical steroid have helped. Prior to that I found some things that helped.
Get rid of any toothpaste or mouthwash with sls, sodium laurel sulfate. Try taking l-lysine and zinc. Those things helped me the most. Also, a mouthrinse through prevention labs. They have an antibacterial one and one that's specialized for cancer patients who often develop mouth ulcers during chemo. I used to be able to find it at Walgreens, but then they stopped carrying it and I had to order it online.
I'm currently trying to get someone to test me for Addison's as I seem to have a lot of the symptoms, including mouth ulcers and fatigue.

 

[Spooky1]

Hi,

I suffer exactly what you do too. All i can do is offer sympathy. i was so tired and poorly yesterday that i fell. i've bumped and bruised myself and am awaiting an xray result (i'm in rural areas). so i've got my hand all splinted up. i am used to falling but it was hard surface and i cried, lol. Be careful when fatigued! i do get desperately clumsy and when i walk i always vere to the left for some reason. My GI said he only dealth with intestine. long ago they knew all associated issues and referred us, but not anymore.

 

[Light Blb]

Yep, mouth sores, tongue sores. I have nothing for them. I know my first one was at age 5. I was diagnosed at age 53. I get hit and run sores (so I call them) as they HURT but heal quickly. I just accept that I am going to hurt somewhere every day.
I am doing WELL on the SCD diet (5+weeks into it). By "well" I mean that my inflammation is down but I still have cramps and a bit of breakthrough bleeding hardly worth mentioning.
Oh, and I am pretty clueless about getting around a forum.

 

[Angie3160]

Thanks to all who answered, I found a WONDERFUL med for mouth sores, it's a dental paste, brand name kenalog or oralone, it coats mouth wonderfully at night and the next day I would say the swelling in mouth is decreased by 70%!!

 

[Spooky1]

i will give that a try soon i think. thanks

 

[cheerfull]

Yes when I had constant mouth full of ulcers I found kenalog the only thing that releived them. However the underlying cause for me was low B12 folic acid etc which removing gluten from my diet helped considerably; once diagnosed as coeliac, now also have Crohns