I was diagnosed 9 years ago with proctosigmoiditis at age 67. I couldn’t believe it, because I had always thought UC was a young person’s disease. My diagnosis of UC was 2 years before my husband died of terminal cancer. We were traveling extensively to MD Anderson Cancer Center in Houston, Texas. We live in Mississippi and we were traveling for scans or treatments every 3 months and intermittently staying in Houston for at least 3 weeks for radiation treatments. We have 3 grown children, 7 grandchildren, and 2 great-grandchildren.
Some more background details:
I have always been very active, worked in public office about 30 years before retiring. I enjoy community and civic activities, traveling, reading, and involved in my church striving to volunteer where needed.
By the end of my first year of Ulcerative Colitis diagnosis, I began having chronic rectal pain that has plagued me ever since. I have seen 3 GI doctors, who cannot figure out the cause of the pain. I was told I had a slight prolapse, had surgery, and still have the nagging pain. Doctor told me there are so many nerves in this area that it’s hard to determine what is causing the pain. The doctor had me to take physical therapy, thinking it might be partially caused because of arthritis but can see no improvement.
Joyce’s Ulcerative Colitis Story:
I have been very limited in activities, because of this chronic rectal pain. I have been treated periodically with prednisone along with Apriso and Canasa suppositories when having a flare, then continue Apriso and Canasa. My doctor did another colonoscopy this last year and says that I am not in total remission because I still have mild inflammation.
He treated me first with prednisone, Apriso and Canasa . Then he put me on Imuran along with Apriso and Canasa, hoping to discontinue Canasa in a month. Had flu-like symptoms, low grade fever, slight rash, so he took me off Imuran and substituted Mercaptopurine along with Apriso and Canasa. I have been on it about one month, have slight nausea and lack of appetite but side effects are not as severe as the Imuran.
My UC seems to be in complete remission but I still experience the chronic rectal pain. A heating pad relieves it somewhat. Sitting and standing for a period of time makes it worse.
Lying down at bedtime, the pain gradually subsides, and I sleep through the night.
Have been given low dose klonopin and elavil.
Has anyone experienced the rectal pain that I have described? It is similar to a raw sore that has been aggravated by rubbing, and persistently aches and hurts.
I even have an auto heating pad that I use when riding because riding seems to make it worse. I have fits with the pain if have to sit on a hard or un-padded seat. Has anyone experienced symptoms similar to this? I have been given proctozone cream, lidocaine cream, tried Dipentum when first diagnosed, but when have a flare, nothing but prednisone gets it in remission. When my pain began the first year of diagnosis, was having 15-25 trips per day for about 3 weeks.
Medications / Supplements She’s Using:
Besides the Apriso, Canasa, Mercaptopurine, I take a multi vitamin, fish oil, Max Q10, have wondered about Boswellia extract and Olive Leaf extract but doctor says he’s not familiar with these and you don’t know exactly what’s in them. So have not tried yet.
written by Joyce K
submitted in the colitis venting area