The last few years, I have had a bit of a hard time with my health. It’s a long story, so make sure you’re sitting comfortably. Perhaps get some kind of refreshment, too…

In May 2009 (around that time at least), I started getting the symptoms of what I now know to be Crohn’s disease. I had lost weight when I went to University (I went from 182lbs at my highest weight, down to 110lbs, all between 2005 and 2007. ( I thought I was just doing really well at dieting!) So maybe it all started back then, but it wasn’t until May 2009 until I started having the ‘hardcore’ symptoms, such as the cramping after meals, discomfort going to the toilet, more weight loss, fatigue and anaemia… At the time, I thought the cramping was down to an intolerance to lactose and decided to just avoid dairy, and that all the cramps and discomfort would go away. Of course, that didn’t happen.

November 2009 was the time everything kicked off – bought a house, went through risk of redundancy… stress started to add to my poor health and eventually it reached a peak where it all climaxed into a big mess. I had a colonoscopy (which was very traumatic and, even with more of the sedation stuff that they usually give, was very painful and I cried the whole time.) They took about 20 biopsies and I was given Buscopan, but it wasn’t helping. When I went back to get the results of my biopsies, the consultant’s registrar took one look at me and decided to admit me there and then. So in February 2010, I was admitted to where I stayed for 10 days in the Digestive Diseases Ward 29. I was completely dehydrated and my HB levels had gone down to 6 (you’re supposed to have a level of at least 10) so given five units of fluid, two units of blood, a diet plan of liquid feed to rest my bowel (this stuff called Modulen), Prednisolone and Azathioprine. I went home after improving… but it didn’t last long.

Six weeks after starting the liquid feed, I was allowed real food again, and while I was very happy and very excited about having food again, it turned out to be rather unpleasant when the cramping came back. And even worse when my hip wouldn’t straighten up. The gastroenterologist said I’d need my GP to refer me to a rheumatologist for the hip pain, but when I saw my GP, he was suspicious. He said, because of being on immunosuppressants, it might be something more than just a bad hip. He went back to my gastroenterologist and said that it was a GI issue and that I needed further investigation.

Sure enough, I went back into hospital where I had various scans (I think at this point I had had every kind of scan there is!) and the MRI scan and ultrasound scans finally revealed a HUGE mess of stuff. What had in fact happened was that my colon had perforated and waste and pus was collecting near my hip in the muscle, hence why I couldn’t straighten it. It has also numbed the top of my thigh. It was called a Psoas Abscess. Once they found this, they said the only option was surgery; a temporary ileostomy, with a chance that I’d have a mucous fistula too. I went in for emergency surgery on 29th March 2010 and had the damaged parts of my ascending and descending colon removed, resulting in a mucous fistula and ileostomy. And, of course, the abscess was drained. My stoma is called Stan, and my mucous fistula is called Colin. The surgery went very well, though post-surgery the pain has been unbearable at times, and various fluids have escaped my body which has been very unpleasant. And when the glue dissolved and my abdomen burst, I had a very very big freak-out. Especially when you look down and see a big cut down the whole of your tummy (13cm long x 5cm wide x 3cm deep…).

I have had many ups and downs since then. It took seven months for my midline incision to heal. I had several leaks a day, and my peristomal skin totally broke down, so even more complications. I ended up finding a solution to my problems through Coloplast, and I am a huge advocate of their products, services and generally how they operate. It was only thanks to their convex products that I was able to stop the leaks and get out the house! Eventually I got stronger and stronger every day and overcame each hurdle that I faced. I even got married – now THAT was something I would have never seen if it hadn’t been for my ostomy surgery!

A few years later, I decided that having two stomas was a lot to handle, even for someone who’s been doing this for years, and so I opted to have one of them reversed. In May 2016 I said a sad farewell to Stan and he disappeared back inside to hook up with Coleen the Colon (the other end of colon to Colin). I was left with just one stoma – Colin had been promoted to 1st Stoma.

It was a slightly bumpy recovery but nothing compared to the first time round, and after a couple of months I was feeling better than ever!

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Anon · 23rd April, 2013 at 8:07 pm

Hi, I work for Coloplast in the Customer Care Department and even though I was not at the conference, I have heard all about it from colleagues who were incredibly inspired by your story. There is Crohns in my family (fortunately I am not a sufferer) and my uncle sadly passed away at only 42 from bowel cancer so I have always been very (interested is probably not the right word but not sure what is!) in bowel health.

I have found your vlogs very interesting and you have encouraged me to remember why I started working for Coloplast in the first place. So thank you from me and the future customers I will speak to. 🙂

Clive Balliston · 19th December, 2013 at 10:06 pm

Wow you have had a tough time, although my surgery was extensive and lasted 10 hours it was all done by key hole (how he did it from outside the room i don’t know ha ha) but jokeing aside i have had a lot of fisuilas and a lot of bleeding, i was rushed into hospital in june 2011 totally dehydrated and colapsed vains i was given all the usual meds and blood and a whole lot more i have had many colonoscopys which was very painful as the worst of my crhons was in that area and the decending colon .

Lea Davenport · 28th November, 2015 at 2:41 am

You may say I’m a vet of all things bowel related now in ’15.In ’87/88 at 19,nearly 20,I had no idea what was going wrong.Pain,hot needle like pain,became my day til,well you know the rest.That spring of ’88 was my 1st time living away from home,Leighton Hospital 7,then 14.A total of 6 weeks.Reversal faded away as both remnant colon&rectum to badly affected.So ,now life with “Shorty” is 2nd nature.Cannot say I never wonder what life may have brought along if May ’88 hadn’t happened.Life goes on though and we take what we can.Being grateful we are still breathing.

    ThailaSkye · 28th November, 2015 at 11:41 am

    Thanks for sharing! Life indeed does go on!

Salim Affendi · 12th November, 2016 at 9:37 pm

I am impressed by the manner in which you have walked through the most painful period of your life. I can very well understand your pain because – I had and aggressive UC diagnosed in March of 2010. No medication worked and had to go through partial colectomy under sebsis and perforation. The rectum was retained ( could not be excised in sebsis) and so was a bit of UC which started playing up. By choice opted for JPouch which failed within 6 months and there again was wheeled in to the OT for an emergency surgery under sebsis – in Jan of 2013. Total colectomy – rectum excision after six months.

Come 2016 – Adhesions are are playing havoc – causing bowel blocks – two of them unblocked via a conservative treatment and the third unblocked by a surgical intervention because the adhesions just enveloped my intestines.
All of the above managed in Mumbai. Just returned from London after meeting an Intestinal management surgeon Mr. Alister Windsor – who has identified the dominant adhesions and its coordinates. He suggests that I go through an elective surgery in which they remove the part of the intestine which house the dominant adhesions (The source of the problems) and at the same time strengthen my battle scared abdomen by placing a mesh in place of the weakened tissues, repair the muscles and the semi herniated part of the intestine and strengthen the under skin. This some time in January.
I am sharing this with you – so that you speak to your doctors about Adhesions which are a fall out healing and will attack you post multiple surgeries.
I am 62 years old. You are young and I hope your body will cope with state of affairs better. Hope you do not get into this adhesions related mess ever. That said do discuss with your docs.

Best of luck.

    ThailaSkye · 13th November, 2016 at 7:27 am

    Thanks so much for sharing – I will certainly mention this in my next appointment! Wishing you the best of luck!
    – T

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