I’m setting up this page to log and monitor my health as I start a new treatment for Ulcerative Colitis. I’ve had it for about 18 years now. I have been on immuno-suppressants and cyto-toxic treatments, and when it gets really bad, weeks of steroid treatment. The side effects of the steroids are varied and awful, but they do clear up the flare. My last flare-up came rather soon after the one before, and my consultant recommended Golimumab, a drug administered by injection through a system called Simponi.
So I am going to have a supply of medications to keep in the fridge, a sharps box and other parafinalia (spellcheck) . Then a nurse will come to my home to do the first injection. Again two weeks later she will supervise while I inject myself (Eek) and after that its once a month, on my own.
I’m currently keeping fit by..
Taking walks – about a mile, at lunchtimes twice a week
Yoga and stretching most days, and balance games on the Wii Fit (if I can set the balance board round the right way) occasionally.
Ten minute workout video, or half hour sweat dancing sessions. These sessions should be three songs long, but I have to do five to get the score I need, which is why it takes half an hour. This is just once a week, if I feel up to it.
So a mixture of these makes me feel I am doing my best to keep active. I try to watch what I eat but it’s too quick for me. I don’t know what I weigh. The Wii Fit has a history going back over 4 years and I haven’t really changed very much. When my Colitis is in flare, it affects what I can eat and my appetite, and then the steroids kick in which increases appetite and I put a bit of weight on due to that.
It’s annoying that the steroids seem to cause the laying down of new fat in a different place each time. So after five courses, I have a flabby back, floppy belly, baggy chin and bat wing arms. And my once shapely legs are like ham hocks!
So if this new treatment can keep me flare free and steroid free, without side effects, I will be delighted. Roll on to November 1st, for my first jabs.
Health update update.
Well the medication arrived. Then the nursey person arrived and said the wrong dose had been sent. Two weeks later and I’m still waiting.
Health update update update.
The correct dose injections arrived on 21st December! Nursey and I agreed it would be best leave my first ones – 2 x 100mg till new year, and a date was booked for 3rd Jan 2018.
On 1st January I got shivers shakes and a sore throat, and by 2nd I had a puffy neck with obvious swollen glands, so the treatment was on hold again. Today, 8th Jan, a new date has been set for 17th Jan. It has to be a Wednesday as thats my day off, and I can’t have it this week ‘cos guess what, I’m on a driving speed awareness course (see other blog post, LOL)
Exercise wise? Well it’s been Christmas. Also my office moved locations and I haven’t sussed out a good walk round yet. I did a little test walk around the block today, which only took two minutes so I will stretch my self a little further next time.
Update March 2020
Been on Simponi (golimumab) two YEARS now and doing well. Still walking – round our local park now as I have retired from the day job. Still using th Wii board (and still set it up the wrong way round!) to do stepping and balance, and without it do do “sweat dancing”. Also dieting to lose a bit of the steroid weight/alcohol weight.