I am a 66 year old woman just diagnosed last year with possibly UC. My last colonoscopy was September 8, 2015 because the Dr. I am consulting with at Stanford needed more color pictures in order to come up with a definitive diagnosis.
Some more info:
I am a Certified Specilaist of Wine as well as a Sommelier. My husband and I love to fly fish and just came back from a 3 week fishing trip in ID. We have a small travel trailer (Casa de Wheels) that we take out a couple of times per month. We are both very healthy and do some sort of exercise every day. We are also avid readers.
I am currenly using a Mesalamine Enema to control my rectal bleeding. This is a 4 week program; every night. I am also suffering from constipation that I am now taking Milk of Magnesia for. Makes it difficult to get my exercise in.
Last November, I was diagnosed with possible UC, however the rectum was not involved, so my Gastroenterologist was not sure. I was prescribed Apriso, but within a couple of weeks, I would have another flare and get put back on the Mesalomine enema again. Because of the huge cost of these meds, I fell into the Medicare gap and am now paying well over $200/each medication. The biggest frustration for me is that I don’t know how to get out of a flare without these expensive meds. A couple of months ago, I found a Dr. at Stanford that I know is going to be able to help me. I felt my current Dr. was just treating the symptoms and not trying to help me get relief from these flares other than the hugely expensive meds. He would never call me back. Just had one of his staff call me. No help there.The longest I have gone without a flare is 3 months. This last one, I also had horrible constipation and was told to take Milk of Magnesia. Th at really limits how far you can go from a bathroom.
My next appointment at Stanford is in November. She will have a bunch of new pictures from my colonoscopy that I had on September 8, 2015.
My husband is really supportive and has totally bought in to trying to go GF, stop caffeine and adding coconut oil to my diet (1T 3x’s/day).
My biggest concern is how to get myself back to normal when I get into a flare. I get very panicky when I continue to have bloody stools. I usually run a fever the first night I start entering into flare mode. I don’t feel like I have a very good support team from my local Gastroenterologist. His staff often doesn’t get the messages I leave for him. I have read that you need a strong Team that you can rely on even if you have to call them every day. I don’t feel like I currently have this support. I was so happy to find this website. Already many of the stories has made me feel like I can get through this. I just need to figure out how to get back to normal while in a flare. I am on a fixed income and paying sometimes over $400/month for these meds takes a huge toll on the retired life style that I enjoy.
I am currently taking Apriso (4 tabs every morning). When I have a flare, I take the Mesalomine Enemas for 4 weeks. Some of my diet changes have been 1) going Gluten-free 2) stopped caffeine; start my morning with 24oz of water. Wait 45 minutes to eat. 3) no sodas 4) take 1T of coconut oil 3x’s/day.
written by Shannon M
submitted in the colitis venting area