25 years With Ulcerative Colitis and Newly Diagnosed With Burning Mouth Syndrome
Last updated: September 2023
This is my first time to join a support group. I think what really motivated me was that I don't know one person personally that has ulcerative colitis. Sometimes I just want to share, especially now that I have been diagnosed with burning mouth syndrome (and yes, it is as bad as it sounds).
Pain on top of pain
So, I thought I knew enough about UC and was in remission for a while. I was too relaxed until June 24th of this year. To add misery to more misery, the day my UC flare-up started, the burning mouth syndrome decided to join the party.
I was terrified. The two positive things I took away from this are that BMS only stuck around three days and the fact that the pain level was at a five and not a ten.
A strange new symptom
About ten days into the flare-up, I was having issues in my mouth. It hurt to talk, it hurt not to talk, it was painful to eat, and I am sure I am missing a couple more things. I found out that the infection decided to also travel to my mouth.
The beginning of this was doable because it seemed to come around every three days, and it was always around dinner time. By the time I would go to bed, it went to bed.
This was the longest flare-up I had and not only that, it was the first time I lost weight (25 lbs). I felt so sick through this one and even as of today, I still don't have an appetite. There is so much more, but I want to focus on one specific issue.
No help at the hospital
I ended up being admitted to the hospital and had the normal test done including a sigmoidoscopy. After the sigmoidoscopy was done I just wanted to get out of there, so I asked the gastro doctor if I could go home because if they were just going to send me back up and hook me to an IV, I could go home and hydrate there. So he said fine, and I was thrilled to get home.
This is where I need your input. Remember that mouth infection? Well the past week and a half, I noticed it was going south. I went from having five controllable symptoms to twelve. It started as soon as I opened my eyes, and then it was around the clock. There were nights when I got no sleep at all.
While all of this was going on, my doctor was on vacation for a couple of weeks, so I asked to talk with the on-call doctor. This doctor asked if anyone put me on anything for my flare-up and I said, "no." I think he was a little startled by that.
Question for the community
So, my question is (please keep in mind that I will be calling them tomorrow with the same question): do you think because my flare-up wasn't treated that could be the reason my mouth is the way it is today? I will be picking up the meds tomorrow, so I am really hoping that I will see some improvements very quickly. The pain is ferocious!
Thank you for listening and any input you could provide me.
Do you have an IBD story? Click the button below to share with our community!
Does living with IBD impact you financially?