Ulcerative Colitis, Ileostomy and Me


Today is World IBD Day, part of Crohns & Colitis Awareness Month. For me it is a day of celebration – because, although, my IBD doesn’t define me – it has made me who I am.

I was diagnosed with Ulcerative Colitis back in 2006, after what I thought was an ongoing stomach bug I’d caught in Bulgaria. Everyone on my mothers side, inc my brother, suffer from IBS but I’d never had any problems. Suddenly in Bulgaria, whilst laying on the beach, I became aware that my Bikini Bottoms were filling with something unpleasant. I had to waddle back to hotel with a beach towel wrapped round me. Little did I know this would be the first of uncontrolled mucus messes I would get into.

Back home my stomach didn’t settle, I was back and forth to the family GP whose answer never changed from ‘It’s IBS nothing to worry about’ and ‘your too young for it to be anything serious’. Then I started passing clots that looked little baby mice. I knew I had to get the doctor to take notice so I got an emergency appointment the next morning and took him a lovely sample in a Chinese Takeaway Carton. 

Sit up he did and then he went so pale I thought he may faint. Immediately there was hurried discussions of urgent tests and specialist appointments. I am very, very fortunate in that I get private health insurance through work – so it was less than a week of sleepless nights before I saw Mr Strauss – who would become my super hero and life saver. 

I can’t remember if Mr Strauss said straight away that it was UC or whether he waited until all the tests were back but the relief of having a diagnoses was amazing. Not more so than because I was due to get married in a couple of months and despite always being skinny I was beyond ridiculous. 

This is me on our Honeymoon – I’d managed to get up to a UK size 6

I was started on Asacol 3 times a day and I’ll be honest, except for the odd flare up that required a 2 week dose of steroids, the next 5 years were pretty much plain sailing. 

In 2008 I fell pregnant with my son, Callum, and throughout the pregnancy my UC was monitored but remained well behaved. Sadly that was short lived and when Callum was 6 months old, I was rushed into Edinburgh Royal Infirmary – not more than 2 hours after landing in Scotland for Valentines Weekend. My UC had gone into overload, and I had to be kept in on a steroid drip for 2 weeks. 

After this we never managed to get control of the UC again, I was under two specialists now – Mr Strauss Consultant Surgeon and Mr Melia Consultant Gastroentrologist. Every medication and treatment available at the time was tried and failed me. I was on the highest dose of Steroids for 9 months. I couldn’t work and was barely able to look after myself let alone my baby. In the end we had to move in with my parents because I could no longer lift Callum or even cuddle him. 

The suggestion had been made about Surgery but because of my age it was to be thought as a last resort. After 9 months I was more than aware I was no longer living I was just surviving. Not only was my health taking its toll one me but the fact I couldn’t even comfort my own child was getting me down further. 
I took the decision to have the ileostomy with the view to reverse it, if I wanted. People often ask if it was a hard decision but for me it was a bag or my life. 

Again I was lucky that I had Private Healthcare because it all happened very quickly, I chose though to have the Op done in the local NHS hospital because it meant that money would be going back into the hospital – for those not as lucky as me. 

By this point I had become massive, from the steroids, I refused to buy clothes in a (MUCH) bigger size so had been wearing my maternity clothes again. My husband just looked a picture of me in hospital and asked who it was. I would end up going back into the same hospital 3 months later and none of the staff recognised me because I had lost all of my steroid weight. 

Callum and I – the day after my Op

The last time I saw my belly like this – X marks the spot!

Introducing my Stoma -Gizmo and it’s friend the Bag.

I had no initial problems with dealing with the Stoma in that it didn’t make me squeamish and I didn’t find it repulsive to look at or touch. I think age was on my side as I have only known my body for 30 odd years and I think that its why the elderly struggle so much to adjust to having a stoma. It must be a shock after some many years. The changing of the bag was difficult to get my head round, in that, it was taking me an hour and seem very complicated. The Stoma nurses at Darenth Valley Hospital are amazing though, so very supportive and diagram for everything. 

Straight away, even whilst recovering, I knew I’d made the right decision. I already felt massively better just from having my Toxic large bowel removed. And yes now I could poo anywhere I wanted. I didn’t have to worry about where the nearest loo was. 

3 days after leaving the hospital I did have my mini breakdown though, thanks to very unsupportive Community Stoma Nurse. Who told me in no uncertain terms I could forget about fashion – all I’d be wearing for the rest of my life was tracksuit bottoms and woollen jumpers, come rain or shine. She also told me I’d never be able to fully conceal my bag. 

For 3 days after I cried non stop. Still wearing my maternity clothes and refusing to leave house. Then I had an Epiphany – I’d never noticed anyone in the street / public with bag before and I must have come at least across at least one?! So I went onto the Internet and finally happened across the Young Ileostomates website. On the forums were the answers to my prayers. Simple but common sense advice galore – including how to get prescription stoma underwear. One week later a packet of said underwear arrived and ……well I think this picture paints a thousand words.

That is my fat happy in a delirious way face!

My joy was only short lived as 2 weeks later I was struck down by Severe UC flare up symptoms but how was that possible? Well a rectal stump had been left for the purpose of a reversal to a J-pouch some time in the future. Now I don’t know what the statistics are but I do know it is very UNcommon for the UC to return to the stump but like a dog called Lucky, it had to mine. 

I was already unsure if I wanted to have the J-pouch, there was all that talk about re-training the bowel and still going to the toilet a lot. To be honest I’ve never had it so easy since having this bag – accidents aside!! So I wasn’t too dismayed when they told me that they would have to remove the remaining stump. There I was just before a week before Christmas having my arsehole sewn up. No really I was….they pull the colon out via the ‘anus’ and then stitch it all together. This still amuses me now and sometimes in the bath I forget and think ‘Oh My God!! What has happened’.

Trust me it has not been plain sailing ever since and the above, believe it or not is the abridged version but I got my life back and my family got me back.

As part of World Crohns and Ulcerative Colitis Month I will continue with my story but focusing on the highs and lows of life with an Ileostomy.

If you have any questions, please feel to ask via the comments on here or via my twitter account @sonikmummy – DM if you want to do it private. 

I can’t thank you enough for taking the time to read such a personal story.

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