My #GetYourBellyOut story: Brenda

At the start of my IBD journey I turned to social media. I had been unfortunate with gastro consultants (I have a wonderful consultant now). I was so ill-informed and scared that I googled Crohn’s Disease and in amongst the answers that came up was an organisation called #GetYourBellyOut – I decided to take a look. I’m not exaggerating when I say that was a pivotal point for me.

My name is Brenda, I’m 71 years old and have four grown up children – two sons, two daughters who have graced me with five grandsons. I live with my partner of twenty-three years, love knitting, reading and coffee. I retired from my career as a dental nurse/practice manager in 2012 when my Crohn’s Disease began to interfere with my working life…

In December 2011 I began to get some blood when going to the toilet. Despite having no other symptoms at all I went to see my GP in January of 2012 who acted very quickly, possibly due to my age and symptoms suggesting something nasty. Within three weeks I had had a colonoscopy done and was diagnosed with Crohn’s Disease.

The first year after diagnosis was not too bad to be honest. In September 2013 I was given Azathioprine, which after just ten days caused me to be hospitalised with pancreatitis. This cost me a further ten days in hospital where I had to inject insulin daily until December. This seemed to be the start of a dreadful couple of years, during which time I became virtually housebound.

My family have been amazing and very understanding about the fact that I became very unreliable due to my ill health and was constantly forced to cancel at the last minute. We couldn’t really make any plans but if I did have a decent day with my health and could 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 because as silly as that may seem, I just couldn’t physically keep going up the stairs. During this time, my partner literally had to do everything for me because I had become so ill and weak.

At the start of 2014, my symptoms escalated. I was prescribed Humira which unfortunately didn’t get a chance to work as I was hospitalised so many times with infections, given IV antibiotics or steroids. In April, after a dreadful attempt at a colonoscopy, it was discovered that I had a stricture that had almost closed my colon – I was referred on to the surgeons.

I was quite anxious about how my life would change after the surgery, but I tried to be positive. At the 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 had a temporary stoma.

Unfortunately, my recovery from this surgery was not good at all. My scar was constantly weeping, and it wasn’t until February 2015 that it was discovered I had an abscess which meant part of the scar reopened and I was left with a large open wound. I had a heavy vacuum pump fitted which I carried around everywhere with me until June. My health did improve after the abscess was dealt with and I was able to get out and about a bit. However, by now I was having Methotrexate which disagreed with me and as this was my last medication option I was soon sent back to the surgeons. In November 2015 I had the rest of my colon removed and my stoma was made permanent.

This surgery was a complete turning point. I recovered very quickly and became my old self again, 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 in realty it’s usually more like five miles a day.

The help, knowledge and support I’ve had from GetYourBellyOut CIC is amazing and the amount of friends I’ve gained has given me a reason to see many places across the UK that I never would have been to see if it hadn’t been for visiting my ‘belly’ friends.

I’m still a very active member of #GetYourBellyOut, only now I offer support to others rather than asking for help myself.

During my worst times I went from 17.5 stone to 10 stone and for me that was a positive because the weight loss meant that I no longer needed blood pressure or diabetes medication. Seeing so many IBD’ers struggling with losing/gaining weight I started my own group (alongside a dear friend) under the guidance of #GetYourBellyOut which is a clothes swapping group. Members donate clothes that no longer fit and offer them to other members for just the cost of postage.
My whole outlook has changed due to what has happened since diagnosis. For example, a couple of years ago I was invited onto the Ann Diamond radio show to discuss #GetYourBellyOut and the clothes swapping group. I am so positive now and I understand that 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 won’t 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 probably makes it really good advice. My main advice is to get help when you need it.

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