Be careful what you wish for - Brenda shares her story
Firstly, let me explain the title of my story. From a very young age I was chubby.
As I got older I became an obese adult, too lazy to diet and I always wished there was a way to lose weight that would take no effort from me.
Well, I got my wish quite recently and believe me it was definitely not what I wanted…
Around thirty years ago I was diagnosed with Diverticulitis. This didn’t really cause me too much trouble over the years and as I was having regular colonoscopies I knew everything was OK. Just before Christmas 2012 I started to get symptoms that were new to me so assuming it was the Diverticulitis I took myself to my GP who organised another colonoscopy. When I woke up after the procedure I was completely shocked to be told that in amongst the Diverticulitis they had discovered Crohn’s Disease. I didn’t have much knowledge of Crohn’s apart from hearing of people having bits of their bowel cut away. To be honest, I thought it was a young person’s illness. I was 63 at the time and even my GP thought they’d got it wrong.
Unfortunately the doctors were right. I suffered very little in the first year but it got worse, until eventually, I had no choice but to retire from my job as a dental practice manager.
In April 2013 I went for my regular diabetic check and was told that I had lost 1.5 stone. I was so fat I hadn’t even noticed I’d lost any weight. I thought, OK if I’ve lost that without trying let’s see what happens if I try. I was so good on my diet I couldn’t believe it. I lost another 2 stone! Of course, I later found out that I hadn’t been that good at all, my ability to eat less and keep to a diet was because I had loss of appetite from the illness.
In September 2013 I was put on stronger drugs and within days I was hospitalised with Pancreatitis. This saw the start of numerous drug changes, constant infections and various stays in hospital.
In April 2014 I went for a routine colonoscopy and I was in so much pain I had to literally crawl into the hospital. The doctor who was due to undertake the procedure refused and immediately arranged for me to be admitted. I begged him to try and do the procedure so he did finally make an attempt. The results of this were that I had a stricture so bad that my colon was almost closed. So I was put back on I.V steroids and antibiotics.
The following month, I saw my consultant. I was quite blasé about the appointment as I thought he would just want another routine colonoscopy. However, he completely stunned me by saying that there was no way they would be able to get a camera in so my only option now was surgery. In September 2014 I had a sub total colectomy and ileostomy.
I was recovering well from the operation, then about three weeks post-surgery my wound opened very slightly and was weeping quite a lot. Numerous swabs were taken with no conclusive results and my surgeon decided it was liquid fat seeping out from my body. Then suddenly, it closed. Later on the same day it opened again, but in a different place and this continued. It became obvious that something needed to seep out and as soon as one area healed another would open. During this time I was also very poorly with long episodes of not being able to eat, I had no energy, it was a struggle to even get up from the couch.
In December the nurses at my clinic told me it was time to speak to my surgeon so his secretary made me an appointment for two days later. Again I was immediately admitted and on I.V steroids and antibiotics. I was given a C.T scan and all they could see was a small area of gas and fluid which they weren’t too worried about. After ten days I was discharged, I remember it vividly as it was the Friday before Christmas.
At the time of my discharge I knew things were not all they should be but I was so glad to be home, I just got on with things. At the start of February I knew I was going downhill again but wouldn’t give in until one evening I got a call from my GP asking me to go to see him immediately. Within an hour I was in hospital again having another C.T scan. This time the area of gas and fluid had trebled and was obviously an abscess which had a channel heading towards my stoma, I was taken down for emergency surgery to clear the abscess. I woke up to find I was attached to a heavy vacuum which was there to drain the wound and would be with me for several weeks.
It is now almost May and the wound from the abscess is still open and being dressed every other day by the nurses. The abscess has gone and I feel really well. I’m making up for lost time by getting out and about as much as I can. But, and isn’t there always a but when I saw my consultant three weeks ago he told me the Crohn’s is back and is all over my colon so next time I have a flare up I will have surgery to remove the rest of my colon.
At the start of this journey I weighed 17 stone and I am now struggling to keep my weight above 9.5 stone! This is why I say be careful what you wish for as the way I have lost weight is far more painful and totally awful than just following a healthy diet.
If I can I would just like to add a few things that have helped me along this journey. I found a group on Facebook called #GetYourBellyOut full of young people who accepted me in and taught me so much. I can ask any question about anything no matter how personal and I will get answers. I know I would have been mortified about wearing a bag if I hadn’t seen the pictures the people in the group had posted. The support is amazing but there is also a lot of fun. There is also the ‘can’t wait card’ which should help but the general public need to be made more aware of it. Recently, there was an open letter from a sufferer about the fact that people give us dirty looks for using disabled toilets as you can’t see our disability and I had perfect proof of that at the weekend. I have often had tuts and dirty looks on using disabled toilets but on Saturday as I came out the lady that was waiting with her mother in a wheelchair actually held the door for me smiled and asked if I was OK. The reason for this being at the moment I’m carrying a heavy vacuum pump with tubes coming out of my tummy dressing. That piece of medical equipment made it OK for me to use the toilet.