I am 57 years old and have had ulcerative colitis for 12 years. I went into remission, almost completely free of symptoms, for the first time about six months ago but the UC recently returned. I live in New Zealand, luckily a fairly relaxed lifestyle, but financially and emotionally I need to work and the return of the UC was, to put it mildly, depressing as it makes work difficult. I research as much information as possible, but so much of it is contradictory!
My Colitis Symptoms:
I have the usual symptoms, bleeding, constipation, and some abdominal pain. At the reappearance of my UC the symptom I noticed first was depression, oddly enough. Socially I find UC very restrictive and embarrassing. I also find that my family tries to be sympathetic, they often forget that I need a bit of support to do things like grocery shopping.
My UC Story:
I would love to get more practical support from family members but don’t want to come across as an invalid, which after all, I am not. How do other people communicate their symptoms to others, I find this particularly difficult because sometimes I need help and sometimes don’t and I can’t always predict when I will need someone’s assistance. The family is better now that I’ve had this illness for some time, but I still find it frustrating. I am wondering also about exercise – I do as much as possible but at the time of a flare-up I find I get tired very easily, how do you get around that? I walk the dog, (don’t laugh but he also has colitis) cycle, walk (I don’t have a car so no choice really). Sometimes I find it difficult to drag myself out of bed, let alone bike or walk anywhere. I have never explained my symptoms to an employer as generally it does not affect my ability to work – just makes it damn difficult and potentially embarrassing. I have a good friend who had a more severe form of UC than me and she was wonderful to talk thing over with but she now lives in another city. We are still in contact but it is not quite the same thing. Do other people find support groups useful? I think there is one in my area but I’m not sure. I have a great specialist (the most cheerful man I’ve ever met!) so get very good (free too) medical care. I was very optimistic that after years of struggling with this illness that my recent remission might continue for some time. I was devastated when this turned out to not be the case. I felt I had been let out of prison only to be recaptured and thrown into solitary for an indefinite period.
Where I’d Like to be in 1 year:
Symptoms-free to a large extent and traveling – my favourite occupation of yore!
Pentasa has worked in the past, not working so well now. A mix of mashed banana, probiotic yoghurt, kiwifruit and flax seeds alleviates the constipation.
written by Wendy
submitted in the colitis venting area