To bring you up to date

Standard

This picture perfectly captures the mood of our wedding day a combination of happiness & relief!

Walking back down the aisle as Mr & Mrs

Walking back down the aisle as Mr & Mrs

Over 3 years now since then and life is good!

I made it all the way through the day pretty much unscathed. We had a bit of a leak on the day but nothing was going to dampen our spirits.

Sarah has been so supportive through it all! When I had to have the operation she sat my bedside and told me that we were getting married whatever even if she had to wear the dress in the hospital ward! My life over the past 3 years has been the best health wise for over a decade.

I haven’t let having an ileostomy affect my life. Since the operation I’ve: got married, become an Editor, brought a house, cycled London – Brighton, run a 10K. I cycle to work everyday, I play football as much as I can and I eat what I want, sometimes having to be aware that junk food or Alcohol may alter the output of my ileostomy. But sometimes a curry and a beer can’t be turned down!

I wouldn’t want anyone to have to have a ileostomy but I would say that it has allowed me to lead a “normal” life!

My life so far with Ulcerative Colitis, an ileostomy, Pouchitis and another ileostomy has been a real test of my faith in God. I’m certain some people reading this will have thought how can I trust in God when all this has happened to me. There is a verse in the bible that has always reassured me that some good would come from my suffering.

Romans 8v28:

And we know that in all things God works for the good of those who love him

I don’t think I would have stayed as positive throughout everything without the knowledge that God was in control!

Please feel free to contact me with any questions you have or just to say hello. I’d love to hear from you

L

Advertisements

My experience with a J-Pouch

Standard

I did not have a great experience with a J-Pouch. In fact I don’t think there was really a great moment. He’s what I wrote a few years back:

I had my first operation which was to construct my pouch and a new ileostomy in June. The reason for the new Ileostomy was because the part of my bowel that was use for my original one was going to be used to connect my pouch to my bum. The temporary ileostomy I had worked slightly differently to my original one and took me a while to get used to.

At the beginning of September 2009 I had my ileostomy closed and my pouch was connected. I initially recovered quickly as expected however I went soon took a turn for the worse. I was unable to keep food or drink down and end up losing a lot of weight. I ended up having to be admitted to hospital due to my kidneys failing and being chronically dehydrated.. It was a very traumatic and unexpected time as we thought that I would recover quickly and be back to normal.

Over the following 4 months I was in and out of hospital on what seemed to be a weekly basis, it was horrible. I missed a lot of university and ended up having to pull out of my 2nd year, it seemed at that time if I wasn’t in hospital I was lying in bed at home.

It wasn’t until my 3rd visit to hospital that the doctors diagnosed me with Pouchitis which is basically Ulcerative Colitis but in your pouch. This wasn’t picked up earlier because I wasn’t showing the typical symptoms of Pouchitis. Because of this they were able to put me on a high dose of antibiotics which got me out of hospital on 22nd December 2009, just in time for christmas.

I then spent the next year and a half on antibiotics and throughout that time I felt reasonably well. I was never 100% but I was going to the toilet less than when I had Ulcerative Colitis and didn’t have a Ileostomy. I was only admitted to hospital once after that and that was due to me taking myself of the antibiotics.

I was able to carry on my life as normal, I proposed to my girlfriend and we began the task of planning a wedding. I entered the real world of work and eventually ended up getting a job at The Farm as an Runner. I ended up not going back to uni but instead trying to work my way up the TV ladder, I got 2 promotions in a year and everything was going well.

However as things were closing in to our wedding day, the antibiotics which I was taking seemed to be having less effect on me. A month before our wedding I was admitted to hospital with Chronic Dehydration. I was at this point that me, my fiancé and my family along with the doctors guidance decided that the best decision was to have my ileostomy put back. None of us had planned or wanted this but we knew that it was the only way that I would make it to the wedding and that I would not have to be on constant medication.

It wasn’t an easy decision for us but I made it to the wedding, I was able to go on Honeymoon. Even though having a bag isn’t ideal it was much better than having constant antibiotics and the chance of ending up in hospital within 24hours.

Having a pouch wasn’t right for me, but the doctors have always made it clear that the way my body has reacted is unusual and 98% of patients with a pouch don’t react in the same way. If I was well whilst having a pouch I would have never gone back to the bag, it was only because of extreme circumstances that I had to.

Here’s some more pictures, these are my favourites:

Doctors at work

Doctors at work

Opened up

Opened up

Hands going in!

Hands going in!

Stitching me back up

Stitching me back up

Out of Operation Number 1

Out of Operation Number 1

Op 2 - Connecting me back up

Op 2 – Connecting me back up

Op 2 - Everything all connected and stitched up

Op 2 – Everything all connected and stitched up

Scars - where my ileostomy used to be

Scars – where my ileostomy used to be

Having an ileostomy for the first time

Standard

Like the previous post, this was written a few years ago and are my thoughts on having an ileostomy

On 1st October 2007 my life changed completely. I had undergone major surgery to have my Large Intestine removed and had a Stoma/Ileostomy/Bag (Whatever you prefer to call it). I recovered amazingly quickly after the operation and was back up and running within 3 weeks. The doctors think this could have been because my body was so ill that once these 6ft diseased piece of me was taken out my body was able to recover!

Before I had the operation I didn’t want to know about ileostomies or what living with one would involve. This was probably because it was the last thing I wanted to have done, I didn’t want to google “Ileostomy” and read horror stories, I guess I just wanted to find this all out for myself.

After the operation I loved having my bag, I felt well, I didn’t have to worry about going to the toilet, I didn’t have to worry about having an accident in class. I was able to enjoy my life without the constant worry.

Having a Ileostomy Bag gave me a new lease of life! After suffering for 4 years with Ulcerative Colitis I was able to enjoy life. I carried on playing football, I did a skydive, learnt to drive, moved to London and got a girlfriend who would later become my wife! (Spoilers!!)

I remember first getting my bag and reading a random article about a Ilesotomy bags inflating on an aeroplane. My family had planned to go to Florida and obviously I was about to find out whether this myth was true. It turns out it is completely false and having a bag doesn’t actually stop you from doing anything.

My operation didn’t disturb my studying too much and I finished 6th Form College with a B in Media and a C in English Language, and got into the University of Westminster to study Contemporary Media Practice.

Summer 2008 was involved a lot of holidays! I went camping for 3 weeks (one week body boarding in cornwall), as a family we also went to America for 3 weeks. My bag was not a hindrance in anyway. I didn’t need to be keeping my eyes peeled for the nearest loo or trying to pre empt my bowel movements

In September 2008 the time came for me to severe the parental bond and mover to London, where I would discover that living on you own is quality, but however good you think you are at cooking, mums is always better! University was great fun, I made some amazing friends who weren’t bothered that I had a bag and just accepted me for who I am. I joined a great church in Camden, here’s the website is you want to check it out: www.revelationchurch.org.uk

After being in London for a couple of months one of the biggest “coincidences” or I prefer miracles happened. I was needed to see a Stoma nurse about my bag so googled the nearest stoma care. The stoma care just so happened to be opposite my university just a 5 minute walk away. St Mark’s Hospital is a specialist hospital for Inflammatory Bowel Disease which is an Umbrella term including: Colitis, Ulcerative Colitis & Chron’s. I first visited a Stoma Nurse for a regular check up and this is where Pouch surgery was first mentioned to me.

Even though there was no need for me to have a Pouch because everything with the bag was going well, I was a perfect candidate to have the surgery as I was young and would recover quickly. The procedure involved to operations spaced a couple of months apart and we did it over Summer 2009 so I would be back fighting fit ready to start my second year of university.

My time with Ulcerative Colitis

Standard

I wrote the following a few years back to describe my time with Ulcerative Colitis. It’s interesting reading back through it is hard and I hope by sharing it can encourage and give some hope to others:

I was diagnosed with Ulcerative Colitis when I was 13. I had never heard of it before then and all I knew was that I had constant diarrhoea and was going to the toilet about 20 times a day. Medication that normally helps Ulcerative Colitis are: Steroids, Asacol and Azathiporine, none of these worked with me. I spent nearly 4 years on and off medication, in and out of hospital, we sent tests to America, I had a parasite and throughout these 4 years my weight fluctuated dramatically.

Throughout my times with Ulcerative Colitis I found it really difficult. I couldn’t really go anywhere without being worried about needing the toilet, where the closest one was or whether I could hold it! I had been out with friends and had to come home because of an accident, I’ve had it happen in class, it was one of the most embarrassing things as a teenage boy not to be able to control your own bowel movements. It was when I was having these accidents that I realised that Ulcerative Colitis Sucks!

I am a Christian and God has always played a big part in my life, when I was going through all of this I always questioned why this was happening to me, what had I done to deserve this. I still to this day don’t know why but I have stayed strong in God, when it felt like he had forgotten me I was reminded of the people who God had put around me to support me! I have amazing family and friends and that is all because of him. I don’t know how I would have coped with all of this.

One of the many verses from the bible that has kept me going is Psalm 23: 

The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name’s sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff they comfort me. 

Ulcerative Colitis never stopped me from doing anything! I could play football, go out with friends and have a job. I tried to never let Ulcerative Colitis stop me from doing what I wanted to do. I have even been camping! Even though the toilets are disgusting, sometimes I have never been so relieved to see one!

Living with Ulcerative Colitis was not nice but once I’d worked out how to cope with it, it becomes much more manageable. Wherever I went I would take a spare pair of clothes and wet wipes just incase my bowels decided to open. It was sometime uncontrollable but not the end of the world, it would just mean a quick 5 minutes in a loo to sort myself out and I was back on my way as good as new. Trust me, most people wouldn’t notice that I’d been in the toilet a little longer than usual and changed my clothes even though to me it was blatantly obvious!

It was and is hard living with Ulcerative Colitis, and there was so many times where I wished a fairy godmother and rescue me! However knowing that God has a bigger plan for me allowed me to live my life as normal and not let this horrible disease put me down.

At the end of 2006 I had a colonoscopy to be put on a high dose of steroids in a last ditch attempt to make me well. There wasn’t really any other choice due to pre-cancerous cells were beginning to develop. I put on about 2 stone in this time and continued on a lower dose for another 6 months.

P2210097

Me on a high dose of steriods

P1000216

Me on the lower dose 6 months later

In september 2007 I had a colonoscopy and it was then that doctors said that I needed to to seriously consider having my colon removed as pre-cancerous cells were appearing in my colon. A week later I was sat talking to a doctor who said that if I didn’t have it removed I could get cancer within the next 5-10 years. Obviously the decision to be made was clear, a week later I was sat talking to a surgeon who was going to preform the surgery and 5 days later it was out!

At the 17 I had had an organ removed and had a ileostomy

The story in brief

Standard

New Years Eve 2003 I started having uncontrollable diarrhoea. Originally we thought it was just food poisoning and it would pass, however this continued for several weeks. After a considerable amount of test doctors finally diagnosed me with Ulcerative Colitis. I lived with Ulcerative Colitis for just over 3 years, on and off all kinds of medication, undergoing colonoscopies and blood tests, nothing really seemed to help. In September 2007 I had a colonoscopy, the results came back and they weren’t good. I was showing early signs of cancer and it was decided that I would need to have my colon/bowel/large intestine (or whatever else you want to call it) removed. At the age of 17 I had a ileostomy.

I lived with bag for 2 years and then underwent more surgery to create an internal pouch. This seemed like a great idea, over the summer in 2009 I had 2 operations to create the pouch, they were both successful and I was seemingly on the mend. However the next 6 months were spent in and out of hospital due to chronic dehydration causing my kidneys to fail. Doctors were able to stabilise me by putting me on a high dose of antibiotics. The antibiotics stabilised me but did not make me better.

I lived like this for just over a year until 2 weeks before I was due to get married I was back in hospital with dehydration. My doctors discovered that I had Pouchitis (Ulcerative Colitis for your Pouch) and that the best thing to get me well before my wedding was to give me back my ileostomy. 

3 and a half years on I still have my ileostomy. At the moment it is the best solution and having spoken to doctors for the foreseeable future and until medicine advances I will be sticking with my ileostomy

L

New page! Easier to update

Standard

About 7 years ago I made a website called http://www.ulcerativecolitissucks.co.uk I set it up because I had just undergone a total colectomy due to ulcerative colitis and had an ileostomy. I was 17 and at the point there was barely anything online from people who were in a similar situation as me.

Since then it’s amazing to read so many blogs about peoples experiences and see so many people sharing their stories. I’ve set this page up as over the past few years I’ve become really slack at updating my website so felt it right to get back on it as reading peoples stories encourages me and I hope mine can encourage others.

The next few posts are going to be blog entries from my old website.

L