My name is Kate, I was diagnosed about 14 years ago and last had a colonoscopy about 15 months ago. I had a brief remission for six months following a colonoscopy Three years ago. and been ill ever since. It was an extremely stressful time in my life, so there goes the theory that stress induces flares.
Some more about Kate:
I’m American-Australian, living in Australia. I’m a proud mama of two, full time counsellor (Aussie spelling), and burn my candle at both ends. I’m an armchair political activist (leftie), mad Pinterest pinner, cocktail enthusiast, EBay & Costco lover, camper, beach goer, dog and cat poo picker upper. I’m usually found hanging out in a paddock with my daughter’s horse and son’s dirt bike/scooter/skate board obsession on the weekends if I’m not having a laugh with friends around the fire pit or by the pool if it’s hot.
The worst symptoms for me are secondary to the bowel, though it gives me grief. I suffer from terrible flares of mouth ulcers and arthritis (which has been ongoing for several years). This year I have also had debilitating tendinitis and skin problems as well as an inflamed tongue and dry mouth, making it hard to speak clearly. Does anyone else suffer with these symptoms? I get them all at once, like a huge attack. I am fighting one right now and on a second course of prednisolone which is helping.
I have had about 7 flares in the last two years with severe arthritis and the other secondary symptoms. the worst one was perhaps when I went to the ER with heart attacking symptoms which turned out to be costochondritis. My GP did a bone scan and was worried about my bone density (beginning of osteopenia) and out me on a bone density med he thinks triggered that episode. I think it was mainly the arthritis in my back.
It led to an array of X-rays ordered by the rheumotologist and tons of blood testing and they never could find anything wrong. I never even show any inflammatory markers, which is just so weird and frustrating. This week my ankle was so blown up (4 xs size) my GP could see I am not making this stuff up. But it has felt like I am a malingerer because my symptoms come and go daily with various joints, tendons, ulcers randomly flaring each day. This week I seriously could not walk and was grabbing onto the railing, but the next day with the steroids was walking around with just a slight limp.
I’m really reaching out to see if others have similar secondary symptoms and what their treatment has been that has helped. I am being advised to go on remicade after over a year of resisting it, this latest flare has me desperate. I hate the idea of it being a mild chemotherapy and the whole thing about what it does to a foetus freaked me out, though I have zero interest in getting pregnant. I just thought, if it does that to a foetus, what is it going to do to me?!
I have only ever been on sulfasalzine enemas and pills and am now on mesavant. My bowel is generally better, but I still have on and off flares daily or weekly and my other symptoms seem to come in flares every few months for a couple weeks. The current one has maybe been triggered by a flu I can’t seem to shake (it’s been 5-6 weeks). I just did more blood tests and a nasal swab for the flu and a baseline for my bloods in preparation to go on the remicade.
Sometimes I go for a couple weeks with my bowel settling. Usually I go for months with no arthritis or tendinitis, but have still been getting the dry mouth, swollen tongue and mouth ulcers. So the mess are not really enough and it is time for a big change. Any feedback or ideas is much appreciated. I have never changed my diet much, just avoided certain things during flares but I hate diets and being food obsessed, I just don’t want to do it.
My husband is a real pain the ass sometimes and just doesn’t get it. He thinks I need to exercise to get well, which just pisses me off when I am in such a state. Of course the extreme fatigue is something he just doesn’t understand either and I am working full time and doing way too much of the load at home. He travels a lot, too, so then I am under more exhaustion. Sleep definitely seems to help a lot, but I hardly ever get enough with my work schedule and when I’m on steroids of course it can be hard to sleep sometimes.
My GP is great, an English doc, but the rheumatologist seemed aggressive in approach and said she doesn’t really treat UC attends. I’ve been through three Gastros, the latest moved away and had a gentle lovely approach, but maybe not very effective. It seems the gastric just look at the gut symptoms and not all the others and the bigger picture of the autoimmune disease is not holistically treated. I kept hearing, if we treat the bowel, the other symptoms should go, but not for everyone.
written by Kate BA
submitted in the colitis venting area