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How My Amazing Stoma Saved My Life Twice! My Story!

So why did someone diagnosed with Crohns (later diagnosed as Indeterminate Colitis), who was always told, was NOT a candidate for surgery, end up with having the complete Colon and Rectum removed and now lives with a permanent Ileostomy Stoma?

In 2004, whilst in the first trimester of pregnancy with my first son (now 16 years old) after falling extremely ill, I was diagnosed with what was thought to be Crohns Disease. I had had numerous ‘IBS’ and other labels placed on me prior and was known as a hypochondriac to many as often ill for no apparent reason! But there it was, I was a sufferer of IBD.

I managed the disease between several hospital admissions, ASA drug therapies, Immune suppressants, Biologics, diets, investigations, and other remedies available for 10 years. I had fertility treatment in 2007 which was successful, and I was lucky enough to have a second son (now aged 13). I was ill throughout both pregnancies but thankfully they were both perfect.

In 2012 I qualified as a Zumba Fitness Instructor and was also working 20 hours a week as a Teaching Assistant in a Primary School. All was going fantastically…

In 2014 it all took a turn for the worse! I started suffering regular flare ups to the extent I never again entered actual remission. I had to retire from teaching Zumba as I was too unwell.

The flare up that followed left me hospitalised for 10 days and on Steroids and again on Infliximab (biologic treatment). It was only 9 days later that I met Stuart, my rock!

On the 24th of July 2014 I started suffering the effects of drug induced Lupus from the Infliximab, I was switched to Humira (Adalimumab) in Oct 2014 .

2015 was a better year! I climbed mountains, literally! dived, bodyboarded, and lived life to the full, until August when I was away in Cornwall and I started displaying signs of a flare up yet again! I started steroids, suppositories, antibiotics and anything to help until again in Sept 2015 I was admitted back to Brighton Hospital for IV steroids!

The side effects of which are obnoxious to say the least. I again recovered and after 13 weeks, after a nasty bout of Shingles, I was well enough to return to work.

In 2016 I went downhill fast, I still worked although I struggled to keep up, I was back on steroids, enemas, etc and my Calprotectin levels were back up over 600. I went off ill from work mid-January 2016 and didn’t in fact return until July!

I was sent for MRI scans and various tests and after exhausting all options in Feb it was decided the Humira was not effective any more and I was not responding so back in I went to Brighton Hospital. They started to suspect it was more Colitis and Proctitis than Crohns due to its behaviour, and after 7 agonising days of going to the loo over 25/30 times a day and several at night still, they approached me regarding surgery!

I remember the moment like it was yesterday! The consultant and surgeon came into my private room with several registrars in tow, they sat down and said its time to remove the problem! They were saying so much that I went into a blur!

They explained that nothing else was working and the colon was so diseased, and biologics had failed, that my best option of a healthier future was to have my colon out and have a stoma bag!

The stoma nurse visited me to measure me and with the surgeon the next day they marked me up and off I went!

I had my surgery via 4 small incisions and one large one just above my old C-Section scar above my knicker line!

I had ‘Fred’! My new Ileostomy Stoma!

My Colon was sent to be tested at specialist university and I was subsequently diagnosed as having Indeterminate Colitis. It showed active Colitis and genetics of Crohns and therefore could change in the future to Crohns.

I suffered PTSD from suffering near anaphylaxis the night following my operation when I discovered I am allergic to Morphine!

In 2017 I was referred to St Mark Hospital in Harrow, UK. This is a bowel specialist hospital and my new surgeon Dr Janindra Warusavitarne I was thought to be a great candidate to an internal JPouch and after many agonising months, I went ahead…

My JPouch was created and connected in one surgery on August 23rd 2017, I have covered my experience, good and bad in my blogs.

In summary, I had my rectum removed and only have 1-2cm of cuff left, however despite this, I have continued to have chronic cuffitis and frequent flares of pouchitis since.

I suffered extreme pain in my left side and rectum, frequent episodes of inflammation, bloating, frequency, urgency, fatigue, joint swelling and pain as well as acid output, despite various medications including; Permanent antibiotics, probiotics, biologics - STELARA, steroid injections in my cuff and various pain therapy.

These have all resulted in extreme side effects and had an immense impact on my social, mental, and personal health.

In February 2020, the same surgeon removed my JPouch, carried out a total Proctectomy (removal of closure of the anus site aka a Barbie Butt), and formed a permanent Ileostomy Stoma. This is now where I will stay!

I have Fred the 2nd and again the Stoma has saved my life! I have had complications recovering but am now healthy and fighting back full force for the first time in my life.

I start a new job this month and we are looking to plan my wedding as soon as the Covid restrictions end in 2021 (hopefully).

I spend my time kayaking, cycling and enjoying the great outdoors in our Caravan. All things that have been impossible in previous years.

Today on World Ostomy Day I celebrate my Stoma and am so thankful for the life it is affording me!

Thank you for helping me fight on! Keep smiling and keep fighting! Together awareness can be raised and one day, a cure hopefully found!

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