Crohns and Colitis Exchange

UC is only in the colon, that's why it's called ulcerative colitis. If she's getting ulcers in her throat and the GI doctor things it's from inflammatory bowel disease, it's Crohn's, not UC. But if your GI doctor didn't know that, you may need to look for another one.

I've never had anything like that. I've had stomach ulcers and my gums sometimes get little sores on them, or just get sore and bleed. But I've never actually had ulcerations in my throat, so I don't know what to tell you.

Thanks for your reply. We actually wondered if due to 6MP suppressing immunity that maybe virus (or??) causes the ulcers, again no MD seems to think it has ever happened to patients on 6MP. Chrohns has not been detected so far. Ulcers tested, still no clues. Obviously this has been frustrating! Appreciate the network, I learn a lot.

Hi! So sorry for what your daughter is going through. The closest I have come to this situation is blisters and sores on my tongue. It was diagnosed as Thrush, which is common with long-term steroid use. I have been on prednisone since April. I have Crohn's, so it would not surprise me one bit to find out that it is just from the disease itself; Lord knows I've had every other complication known to man. I am also taking Pentasa and getting Remicade infusions every 8 weeks. My dentist ended up giving me an anti-fungal medication that dissolves in your mouth and it cleared right up. It was awful, though. My tongue would just start bleeding and just drinking water was like swallowing shards of glass:( Hope your daughter is feeling better very soon.

Hugs-Mindy

6mp can cause thrush as mentioned.

Also as mentioned, Crohn's (but not UC) can occur anywhere--including the mouth.

How old is your daughter? Could it just be normal viruses that meet no immune system so things get worse?

Thanks for the responses Mindy and Louise. My daughter is 22. Perhaps the sores which have been seen at the back of her throat are viruses but MDs tested them , could not identify them so far. Had strep one time concurrently. She has had thrush but only with prednisone. MDs generally give her an antibiotic also, which means shes had those more often than we'd like. Mindy, the swallowing shards of glass was very apt. I'm sorry you have had to weather all those interventions and hope for the best for you and everyone in the network. I was not at the new MD appt, so I can't quote what the Dr said, but I will check it out with him via email.

Let us know what you learn. A note--I would make sure to have them double check any suspected bacteria before antibiotics. Antibiotics do bad things to people with UC/Crohn's. (except the people who get antibiotic treatment with flagyl FOR their IBD)

I have experienced severe mouth ulcers along with UC symptoms for the past 2 years. I had no problem of this type before undergoing surgery for hemmroid excision. I am a 38 year old mother of 5. The only thing that helps me (sometimes) is dexamethasone(mouth wash) along with canasa for the UC....I brush my teeth several times a day with childrens training toothpaste because it is the only paste I found that caused no pain on contact. I stay away from acidic fruits which sucks for me.
I am still waiting for a official verdict of what is wrong with me.
From what I have been told Crohns is more likely to cause problems throughout the digestive tract which the mouth is the beginning of.

I have friend who also has UC and also has throat ulcers. Her GI said this is "somewhat" common. But, medication could be the cause of it.

I would recommend Biotene mouthwash. It is absolutely wonderful for gargling or just used as a refreshing mouthwash. It contains no alcohol so it doesn't "burn". I have used this for years and recommend it highly. Give it a try.

Good luck.

Hi - I am a 62 year old guy who has had UC for 8-9 years. Recently my new Doc said that she suspects Chrons not UC. She based this on the fact that Mesalamine seems to have no effect - only Prednisone can calm my flares down (usually in about 6-8 weeks). So we all agree we do not like the steriod. She is recommending I go on 6MP. Anyone have thoughts about which treatment is better ... Prednisone or 6MP?

It usually takes awhile for the 6MP to kick in.......perhaps 6-8 months. The prednisone can help while you are waiting for the 6MP to kick in. If prednisone does not work that well for you, just try the 6MP. Both cause problems, but you need to look at your quality of life. Choices are not always easy.....good luck.

I have UC, mesalazine and prednisone did nothing to me, but my diagnosis still the same, if medication does not work it does not mean you have to change the name of your disease. I had a surgery on June, they took almost all my colon but the last 20 cm, so I will be able to be recconect eventually, they are giving me now azathioprim that is not working either, but as I only have 20 cms of colon my bleeding has diminish a lot and I am taking also some complements for hemoglobin growth.
When they took the prednisone I start with skin ulcers at my face, and as I began my disease with skin ulcers at my toes and loose part of my foot I was really afraid, but I guess this inmunomodulator drug also works lowering the symptoms of the disease ,but not chanching them.
Good luck with your 6mp hope it will work for you...

The Gi Doc is the specialist and his opinion is most important Some things to think about: C dif can get systemic that can cause UC. Candida, (thrush-yeast) can be systematic to inflame the GI tract? Once some bacteria are wiped out other bacteria and yeast, candida can take their place? Crown's most often appears in adults,(your daughter)? Both of these problems can be caused by too much antibiotics at times. When balance is disrupted, it is a challenge to get everything back to balance. However, throat ulcers are not always caused by thrush, especailly if they are giving your daughter antibiotics that address bacteria? So all of our opinions can be mal practice compared to a good Gastrointerologist who is examing the young lady .

Hi,
I've been diagnosed with UC for 18 years and wanted to tell you that Mesalamine really doesn't work for me either. Whenever I have a bad flare, I take Asacol, Rowasa and Canasa (all are mesalamine), but it still takes 6 months (on average) for my colon to heal and be back to a semi-normal life. For me, controlling stress and tension and limiting high fiber & acidic foods are the keys to preventing flares.

I am a few years older than you and spent 25 years in the Military, so I stayed in good shape. My weight was 190 for many years. After I got out of the military, I went into Law Enforcement and still stayed around 190lbs. Then I worked with the Postal Service for 14 years before retiring and had a half walking/half riding route. Still maintained my weight and then they found a tumor in my purturitory gland and once it was removed the put me on prednissone and my weight started going up. I was still walking the same distance, no change in eating habits, etc., my primary care DR., said the weigh gain from the pre. I got to 250 in two months and finally took myself off of it. That was 3 years ago and no matter what I try to do to lose weight I can get down to 230, but no lower. So unless you want to gain a bunch of weight, stay off of it. I also have stomach ulcers, had 13 bleeding at one time and spent a month in the hospital getting my blood back up to normal. I have them in my throat also and been in the hospital for them bleeding also. The stomach uclers have given me GERD, for those that don't know this is too much stomach acid and you burp it up. You know if you have it, because what you burp up, burns like fire in your throath, inside of nose and can be as little as a spoon full to a mouth full. I have been scoped several times and from my throat to the whole inside of my stomach stays raw. I take Nexium (2 a day), carafate, gavascon, priolosec and one genertic. Nothing stops it. Lying on your back or left side, where the food tube enters the stomach allows the acid to leak up the food tube at night and get into the espohgus which cause's the uclers there. Best advice I got from my DR., put three (3) pillows under your mattress, not on top, try to sleep on right side and eat yogurt before bedtime and stay off of tums, alka slecker, roll aids, etc., because they neturalize your stomach acid and your body will create excess acid to make up for what you have neturalized. I feel for anyone who has any of this as I have had it since 1965 and I know what a miserable life it can make at times. Also drinking only the Lipton Diet Green Tea helps a lot, staying away from coffee (I love coffee, but don't drink any) cictrus fruits or juice (orange, grape fruit, cranberry) or any carbonated drinks (regular or diet) and definetly no alcohol, beer included. Hope this helps someone a little!!