Brenda's Story
Hello!
My Name is Brenda Meakin
and I’m 69 years old. I have four grown up children, two sons 49 and 48 and two daughters 47 and 43 and five grandsons 27, 23, 20, 18 and 13. I live with my partner of twenty one years. I retired from my career as a dental nurse/practice manager in 2012 when Crohns began to interfere with my working life. I love knitting and reading and coffee. Lots of traveling around and testing the best places for a good cappuccino ha ha.
In December 2011 I began to get some blood when going to the toilet. No other symptoms at all but in January I saw my GP who acted very quickly, possibly due to my age and symptoms suggesting something nasty. Within three weeks I had a colonoscopy and was diagnosed with Crohns.
The first year after diagnosis wasn’t too bad to be honest but in September 2013 I was given Azathioprine which after just ten days caused me to be hospitalized, with pancreatitis which cost me ten days in hospital and had me injecting insulin daily until December and seemed to be the start of a dreadful couple of years during which time I was virtually housebound.
My family have been amazing and very understanding about the fact that I became very unreliable and was constantly forced to cancel at the last minute. We couldn’t really make any kind of plans and if I did actually have a decent day and get out of the house I would only go to familiar places where I knew the location of all the toilets. I also couldn’t visit anyone with just an upstairs toilet. Silly as that may seem I just physically couldn’t keep going up the stairs. My partner literally had to do everything for me because I was so ill and weak.
At the start of 2014 my symptoms escalated and I was prescribed Humira which unfortunately didn’t really get a chance to work as I was hospitalized, so many times with infections and given IV antibiotics and steroids. In April after a dreadful attempt at a colonoscopy it was discovered that I had a stricture that almost closed my colon so I was referred to the surgeons. I was quite anxious about how my life would change after the surgery but I tried to be positive. because at that time I had no idea that eventually my life would actually change for the better. In September I had part of my colon removed and a temporary stoma.
Recovering from this surgery was unfortunately not good at all. My scar was constantly weeping and it wasn’t until February 2015 that it was discovered I had an abscess so part of the scar was reopened and I was left with a large open wound and a heavy vacuum pump fitted, which I carried around everywhere until June. My health did improve after the abscess was dealt with and I was able to get out and about a bit but by now I was having Methotrexate, which disagreed with me and as it was my last medical option it was back to the surgeons. In November 2015 I had the rest of my colon removed and my stoma made permanent. This surgery was a complete turning point. I recovered very quickly and became my old self, being able to go out and do everything I was able to do before diagnosis. In fact, I do more now than I did before. I have a fitness tracker and make sure I walk at least two miles a day but usually its more like five miles.
Seeing so many IBD sufferers struggling with losing/gaining weight I have started my own group under the guidance of gybo which is a clothes swap group where members donate clothes that no longer fit and offer them to other members for just the cost of postage. Last year I was invited onto the Ann Diamond radio show to discuss the clothes group. The kind people in this group began to say they didn’t want the postage payments so they donated to CCUK instead and we have raised over £350.
Personally this year I have set myself a challenge which I have just completed. In honour of the group that has been such a support, I have visited 50 different places and had my photo taken with my “belly out” and so far I’ve raised just over £200.
Locally to where I live there has been a Sitting with Jane challenge recently where artists have designed the most beautiful benches to commemorate 200 years of Jane Austen. The challenge was to visit all 24 benches and with the help of my daughter who did the challenge with me we did them all. That was a massive feeling of achievement for me being that two years ago I was too weak to get from the sofa to the front door.
My whole outlook has changed due to what has happened over the last five years. I am so positive now and I understand the IBD is with me for life so I accept that I may not always feel as physically good as I do now. I know my stoma wont always behave and I accept there will be accidents but I never leave the house without spares.
I think my main advice to anyone facing surgery would be to ask, ask, ask others who have been through it.
Get as many angles on recovery and advice on everything. Views will differ but there will usually be certain advice that will be repeated which makes it probably good advice, the main advice being,… get help when you need it.
There are many forums and groups on social media. I’ve found my support and I truly believe it’s the best place to get support and advice. Also get a radar key which has been worth its weight in gold to me.
