I have had UC for 3 years. It has profoundly changed my life. I had to retire early from a job I loved, but I am able to do some volunteer work through my computer.
Some more about Jo:
I liked to spend time making dinners and having fun with my family and friends, as well as bike, kayak and go out dancing. That has ended. A month ago I tried to go kayaking on a very easy to paddle, still lake. OOOPs – I ended up in the bushes on shore multiple times!
Only my closest friends call anymore. When one keeps turning down invitations- they stop coming. I tried to explain about UC but when they hear ulcer they all start giving me advice about how to reduce my stress! Which of course adds to my stress because for 30 years I have conducted many workshops on stress reduction, mindfulness, breathing techniques, etc. Hello people- I know all that stuff! UC is not a stress ulcer!
Currently I have severe symptoms and have only left home once in 3 weeks and that was for a trip to the ER due to dehydration and a UTI infection. I had no experience with dehydration and did not understand why I was even more exhausted, weak and foggy. One of my friends is an RN and got me to the ER. I was beyond caring what happened.
Now I am drinking lots of water and trying to find food to eat. So far mashed potatoes and Jell-O are my go to foods. UGH.
BTW- my original UC started about 3 weeks after a routine colonoscopy. I had a healthy colon. After I saw blood in my stool, and the other symptoms began – my GP sent me back for another scope. The Dr. was surprised at how much my colon changed.
Can that awful colon prep bring on UC?
Jo’s Colitis Story:
UC has made me into a stay-in-the-house and watch TV person (we got cable for the first time).
I have been with 3 doctors – one retired, one was just uncaring/nuts, the current one is working to help me. Not one of them thought dietary changes were needed or that probiotics might be helpful. I did everything they asked me to do: two different enemas, Asocol, Lialda, Mercaptopurine, etc, etc. Many courses of Prednisone which caused bone loss, hair loss, eye problems, and the oh so attractive moon face. Nothing works for very long.
I recently began Humira after weaning off Prednisone. It worked for about 3 weeks then the bloody pooping began again. I had to stop the Humira due to the antibiotics for a UTI, and I am back on Prednisone again. Looking forward to my face puffing up one more time.
My family tells me that 3 years is too much to be ill – just take out your colon. I am asked “can I do anything for you?” Yeah – cut the lawn, walk the dog, clean the kitchen, anything but give me advice on meds and food and stress, My closest friends get it that I am doing the best I can under difficult circumstances. My family wants me to be better right now. Each time I try a new medication and it fails I can hear the frustration in their voices. They want me to go to Mayo, The Cleveland clinic, anywhere that will cure me. They want me back the way I was – just like I do.
I was feeling very hopeless until I stumbled across this website. Thank you Adam and thank you to all who post! It is wonderful to be able to read all the posts and find people who get it. The humor is terrific. Borthers and sisters in poop!
Medications / Supplements:
I am really concerned about loosing my colon. My brother had colon cancer and “is bagged for life”. He has a great attitude and a somewhat active lifestyle. He told me it is better than dying.
I would like to find a better way to heal my colon and even if I had a mild case with flare-ups it would be okay. I am looking at other ways to treat UC and have found some very interesting posts. It appears that there is not one way that works for every one. One friend keeps pushing the McDougal diet- has anyone done that? Has anyone gone vegan with any success? I ordered the VSL#3 and hope to start it as soon as it arrives.
Right now I am just happy when I can make it to the throne without wrecking the rug and my clothes, My dog is always startled as I hurtle to the bathroom – she thinks it is time to play so she trots along behind me excitedly wagging her tail only to be disappointed the 20th time that day.
This illness isn’t just hard on me it has effected my entire family. No kids want to see their Mom this ill and unable to participate in family activiies- even my birthday.
written by Jo M.
submitted in the colitis venting area