Hi. In March last year I went to A+E with abdominal pain and constant vomiting-turned out I had a bowel obstruction which was later confirmed as Dukes3 N1 tumour. I had to have an emergency subtotal colecetomy but didn't need a stoma. I was told I'm unusual because most people who had had a similar operation had a stoma or had different problems to the constipation I experienced for the first 12 months.
I was told about my operation and that it was cancer on the 6 bedded ward, with just a curtain around me, by my specialist colorectal nurse,( who has been a gem) so didn't get much chance to talk. As at this point I'd already guessed I had cancer,although not as advanced, and this was far less of a shock than having my large bowel removed, especially when reading some of the advice on-line when I came home. As I was told the team were pretty certain they had removed all the cancer and that chemo was a recommended precaution the next shock was reading about cancer stages and finding out the chemo would be for 6 months- I was only expecting a short sharp dose. Without time to process things and still in shock I then had 6 months chemotherapy, which caused a few problems each course, some of which I still have. For months during and after chemo my sleep, bowel function, ability to cope with anxiety and rational thinking was shot-my brain felt scrambled and I didn't have it in me to access on-line or telephone support.
Since chemo finished things have been up and down. The team looking after me have been lovely but busy and communication hasn't always been the best. I've since found out, on different occasions, I have an hiatus hernia, a lax esophageal sphincter which causes acid reflux, and diverticular disease, it would have made some things easier if I had know from the start. I've also got fibromyalgia and irritable bowel, which is why the cancer symptoms were masked for so long.
I'm trying hard to get on with my life and not worry to much about cancer and am generally doing ok except when new symptoms arise -I'm okay with it for a week or two and then my anxiety spirals and I get panicky- I've had a couple of unplanned C.T scans and investigations, because of my history, all of which have been fine.
My biggest anxiety is still having to come to terms with coping without my large bowel. From the start I worried about having an accident, especially for the first 12 months when constipation was a big problem and I had to take laxatives regularly. I could eat what I liked as long as it didn't cause acid reflux or irritate the diverticular disease. Things started changing about 6 months after my chemo finished and it's a bit a of struggle since finding the balance between constipation and loose stools, especially when trying to eat the recommended fruit and veg intake. For a good while after the operation and chemo I restricted what I did because of my anxiety- I've been able to travel to visit my family(I know the journey and the loo stops on the way) but more recently I have started back swimming and yoga, even though the worry is still there . To be fair most of the time, once I've used the loo in the morning that's it for the day-its just that often when I need to go I need to go. Also there's been a few occasions, just when I start to feel more confident, there's been the curve ball and I've had a dose of the trots for a couple of hours, which is always a set-back confidence-wise.
The reason for this post now is that my family are asking me to go on holiday abroad with them and I'm desperate to go- I've got a beautiful baby granddaughter and want to be there with her but I'm worried about morning flights, aeroplane loos and changes in diet etc. Would love to hear from every-body but especially some-one with a similar experience as mine x
