Colitis causing inflammations in mucous membranes
Thu, May 26, 2011 2:59 PM
Hello,
I'm new to the forum and at a desperate point. I was diagnosed with UC in 1997. I've been very lucky in that Asacol has been the only medication needed to keep my UC in remission. I had my first (and only) child in 2009. After her birth other parts of my body have suddenly become inflammed. Both of my tear ducts are essentially closed up causing constant tearing, my gums are red and inflammed (gums were actually like this prior to getting pregnant), and the most distressing has been extreme vaginal and vulvar inflammation.
My GI ran bloodwork but didn't see anything wrong. My GYN was highly distressed by the inflammation and put me on a steroid cream that I can only use for one week intervals. The eye doctors (saw several) all say the only options are to live with it or have surgery to create new tear ducts.
I have finally been to a rheumatologist who says he thinks everything is connected to my colitis. He said there isn't much he can do other than put me on chemotherapy drugs, which both he and I do not want to do. I am going back for a follow-up with him in a few weeks.
Has anyone else had these types of inflammations in areas other than GI tract? The strange thing (to me at least) is that the UC is still in remission. I'm depressed and feel like no one can help me. My marriage is suffering because of the lack of physical intimacy due to the pain. I'm 33 years old and do not want this to be the way the rest of my life plays out.
Any advice or feedback is appreciated.
Joined May 26, 2011
Wed, June 22, 2011 10:29 AM
Reply posted for karkey.
Yes, I have had horrible ulcers in my mouth for many years, and for about 18 months I had ulcers in my vulva. Excruciating. Ask them if you truly have Colitis or if perhaps you have Crohns? Extra-intestinal symptoms are really more connected to CD. But my diagnosis was indeterminate for about 10 years.
If they are talking about chemotherapy drugs... which ones?
I have been on Imuran <azathioprine> for about 8 years. I consider the risks much less than the risks of critical flare and hosp and death.
Do the research, find out if you have any bacterial overgrowth that may be contributing.....see if other meds or treatments are good options for you. And consider stress management through massage, accupuncture, reflexology, etc. It really can make a difference in systemic inflammation (which could calm things down on the symptom front).
To make sure that you understand and are up to date with the most current research and knowledge of IBD ( Many GI docs can be a bit behind the curve as well) I recommend the book IBD Self-Management by Sunanda Kane, MD.
Magic mouthwash < 1pt viscous lidocaine/ 1pt liquid benadryl/ 1 pt dexamethasone(sp) > by Rx, I found to be very helpful for mouth ulcers. swish and spit. numbed and healed.
Liquid lidocaine as a topical for the ulcers in the reproductive area.
Best wishes. I know it's terribly painful and frustrating. It can get better. But it's a sign that things on the inside are not as good as you think. Fight for your health!
Joined Sep 15, 2010
Related Topics
Total Proctocolectomy
Joined Jan 18, 2023
Hi, I'm a 21yr old female with Crohn's. I ....
read more