Let’s Be OstoMATES…Sue’s Story

Sue's Story

In this latest edition of Let’s Be OstoMATES we have Sue who talks to us candidly about her experiences on the way to having her permanent ileostomy.Hello. I am Sue and I am 43 years old and I had my stoma in December 2016. We have become very good friends in such a short space of time. I have had Crohn’s disease since 1997.

sue ostoMATES

I got put on steroid tablets and pentasa tablets but a year later and another flare which landed me in hospital again I was so fed up of still being on the steroid tablets and not able to taper lower than 20 mg I asked what could be done for me. My then consultant said surgery so I agreed. I saw a professor, he talked me through what would happen and what I should be like afterwards. I had a sub total colectomy and ileostomy removing 80% of my colon. I had that for 7 months and then had an ileo rectal anamostosis which is the joining of my remaining colon to my rectum to go the toilet normally.

I had a few good years where I lived life normally. A few years later (not sure on the timescale) I started getting diarrhoea. Just occasionally at first, then it started getting a bit more frequent but nothing to put my finger on. Then I joined Facebook and started talking to other people with Crohn’s disease and an illness kept getting mentioned. So I went to my GP and he referred me to a gastroenterologist at my hospital. I got sent for a sehcat scan and got diagnosed with Bile Acid Malabsorption. I started taking the colesevelam tablets. With BAM you have to stick to a low fat diet less that 5% fat otherwise it makes your symptoms worse.

When you eat food the bile is supposed to go out through your digestive system and flushed away no problem but when you have BAM the bile comes back up your system and then rushes through you like a slide, no food gets digested properly and you have diarrhoea, stomach pains and indigestion. Everything I ate even though it was low fat and I stuck to mainly low residue foods still went through me and I spent a lot of time on the loo.

I did have a loo phobia though and could not go for a poo if someone else was in the next cubicle or any other cubicle. I had to go in a single loo or I held it in till I could go somewhere. There was not always a disabled loo available. At work there are no single toilets so I spent most of my shift doubled up in pain waiting for home time so I could go. It was normally after lunch time which consisted of a ham sandwich and I still needed the loo after. Sometimes I didn’t make it home even though I didn’t live far from work.

My partner was going out without me on a weekend so I would sit in on my own not having much of a life. If I did venture out with him I would have to double up my colesevelam for a few days before and take immodium the day I went out. That would cause me very bad stomach pains. I would have to make sure I knew where the toilets were and how long till I got there. It was a very planned day out. I would also stress all day until I got home safe in the knowledge I had my toilet to use. Eventually it wore me down and I asked to see a surgeon about having a second ileostomy.

I got told after my first surgery that if I ever had another ileostomy then it would be permanent. That is good because I never want to go back to pre second surgery. The surgeon agreed after thinking it through himself because I am young and would more than likely get a hernia. I gave him my reasons why I wanted the surgery and it was scheduled for 19 December 2016. In I went and my stoma Bert the B’stard was created. Post op was not a smooth recovery in hospital because I had Ileus and ended up with a NG tube and stopped being sick 5 days later.

Even though it is still early days and I am still healing I am enjoying going out walking and not living in fear that I might not make my destination and have to go back home after going into a couple of shops because I really need the loo. I am a lot less stressed and so happy that I can even sleep without waking up to need a poo. I am so happy now.

Thank you Sue for talking so openly about what has happened to you and I hope that your recovery comes to an end sharpish and your life with Bert can truly begin.

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