Gemma Cleary - My IBD Story

Name: Gemma Cleary
Year of Birth 1981
Lives: Yorkshire, UK
Type of IBD: Crohn's colitis
Diagnosis Date: Wrongly diagnosed with ulcerative colitis in 2001 then diagnosed with Crohn's colitis in September 2012
Symptoms at Diagnosis: Frequent toilet trips, hair loss, weight loss,
Details of Surgery: Proctocolectomy with ileostomy

My IBD story started in 2001 after my first son was born. At first I was told I had a severe case of gastroenteritis. I was bed ridden, throwing up, constantly on and off the toilet. I had to crawl to open my front door...I literally couldn't move.

I was taken to hospital by family after losing a lot of weight and was finally diagnosed with ulcerative colitis. Then came a remission and period and many years of thinking that my troubles were over. But, in 2010 it reared its ugly head once more - and I ended up in hospital.

This time I had over 20 ulcers in my mouth, weight loss again and was barely able to speak. Once again, though, I got hold of it and had another remission period...see a pattern forming here?

In 2012 I had a tragedy in my life, one that would cause me to be reborn, so to speak, and as a result my colitis went out of control. My hair started to fall out. So I took control, shaved it off and bought some wigs. I now have far too many styles and colours it's great!

After God knows how many scans, an MRI and blood tests it turned out I had Crohn’s colitis. I started Infliximab and weighed just over seven-and- a-half stone!! Infliximab worked for a few weeks until I took a turn for the worse during treatment. My throat started to close and I went into tachycardia shock. Infliximab was no longer an option - my body didn't like it! After having another MRI (I honestly can't tell you how many I have had over the years) I was told I needed a temporary stoma...just to give my colon a chance to settle. I was heartbroken. I didn't want a bag, who would want someone who had a bag of poo on their stomach?!

I spent some time trying to get my head around it but then the option was taken away. My temperature spiked and I started convulsing. I was rushed into hospital and a temporary colostomy was formed. It was a relief more than anything to not be running to the toilet!

My children have also been through all of this with me. They named my colostomy as Winnie.. A name that has stuck for life!

So, my health was good for a while. I started a fight to put on some weight and got to a healthy size 10-12. I also started Humira, everything seemed to be ok for once.

But no, all you fellow IBDers will know this isn't the case. Just when you think all is good...bam!!

It was my eyes this time - good job it was October and nearing Halloween as I looked like the Devil’s daughter! I visited the eye clinic everyday for two weeks. It was an unfortunate side effect of Crohn’s and another wait for it to pass....

Christmas comes around and I get some results I didn't expect. My consultant wanted to make Winnie permanent. My body was eaten away and it would kill me if I didn’t have my bowel removed. So, in January 2014 Winnie mark 2 was born.

The surgery, wow…I wasn't expecting what came. It lasted 6-7 hours, my insides were falling apart in their hands. My colon, rectum, some small intestine was removed. I came out of surgery and went into intensive care. At this point I felt pretty positive, time for a new start. I was then moved from there into the high dependency unit.

Then my nightmare began...Winnie wouldn't wake up. There was only one way for my stomach contents to exit...through my mouth. I actually regretted my surgery at one point after popping my stomach stitches back open while throwing up.

The doctors did three attempts to get a feeding tube down - every time they tried I threw up and we stopped. I had to have a camera/X-ray to try to get the feeding tube in and the poor hospital staff were covered in poo/sick. It just wasn't happening! This continued for seven days and I was losing will, weight was non-existent and I couldn't get out of my bed.

Cue an X-ray to see what was going on and why Winnie didn't want to wake. Everything was good with the X-ray until I felt a whooossshhhhh...I alerted the nurse that something wasn't right when we got back onto the ward. They confirmed...I was bleeding, fast and heavy. An artery had popped. It was quite literally like a scene from Casualty. My drips were pulled out, there was running down the corridor to theatre, my surgeon asking me to work with him...I thought that was it, I couldn't fight no more.

I was so calm, time to go...

Then as they were struggling to get a line in to put me under the kids popped in my head. Hours later I woke up to some scared faces looking at me - I was alive! I had four units of blood pumped back into me and was pretty groggy with a feeding tube in. I was in agony and wanted it over.

Now I have a very high pain threshold but that feeding tube...wow. It was so much physiological pain. I lasted 12 hours with it in and begged for it to be removed! I was told if I didn't start eating I would die. I had too much to fight for so the next morning in hospital I sat and waited.

My consultant came onto the ward. I eyeballed him and bit into my toast, I wasn’t giving up! Now Winnie finally decided that she'd had enough sleep and started to do what she was made to do. This made me finally see a light at the end of the tunnel. I was eating, Winnie was working, time to go home to my babies. I weighed five-and-a-half stone - my 13-year-old son weighed more than I did!

Home and laid in bed, the kids walked in not knowing I was home...it was amazing! It was time to start living life again and to the full! I think in the first few weeks at home, once I had started to increase my food intake, I had every take away I could think of. Food tasted amazing! My weight started to creep up. I was winning again. Now I've been on six different types of pain meds and maxed them out every day. Finally I could drop four of them...and just live on two for now!

All I was concentrating on at this point was my health and the children.

They say it happens when you least expect it.

Love found me.

I had known him years and he knew exactly what I had just been through. Messages turned to talks on the phone, and long ones at that. That turned into Skype calls as he worked overseas.

Then we took the plunge and met up after all those years. I had no fears with Leigh, wasn't scared of him seeing the state of my body. As he said: "It's only a bit of poo".

He is amazing. My brood has now grown from 4 to 6. He's my strength. There have been some dark times together and nothing phases him at all. I've had my bag explode - not very sexy to be waking your other half up at 3am to tell him you need to change the bed! Nothing is a worry or a stress to him. I'm truly blessed to have someone who loves me, but not only me...Winnie too!

In December 2014 I visited to my surgeon. My bum wouldn't heal - time to cut it open! When I say open, I mean OPEN....

Wow! Pain. It was excruciating having packing taken out and a vacpac fitted (vacuum assisted drainage to remove blood or serous fluid from a wound or operation site). Leigh sat by my side the whole time, holding my hand, not pulling a face at the smell of rotten flesh. Telling me I was beautiful. This was not beautiful at all! I now basically had a Hoover up my non-existent arse!

The vacpac was named Jeff! I think I've lost count of the amount of names we've had for things!

Dressings had to be changed daily...was Leigh bothered? Nope.

On December 21, 2014, he got down on one knee in front of our children and family and asked me to marry him. I can’t tell you how much I love this man!

Jeff was on for seven weeks. It's worked to an extent but not fully. So onto the next step. I’m currently waiting to see a plastic surgeon and I will get a fully pledged barbie butt (stitched up anus).

We have just purchased our first family home and get married in April 2016. Life is amazing.

Crohn's, colitis, any form of IBD isn't nice...it's a battle.

I once had a poem quoted to me: "Never forget no matter how much it hurts, how dark it gets, or how far you fall....YOU ARE NEVER OUT OF THE FIGHT".

I will never be out of this fight...I have too much to live for.

My IBD Journey

Jan 2001

First symptoms started

Bed ridden, throwing up, constantly on and off the toilet - eventually diagnosed with ulcerative colitis

Jan 2010

Flare up

Ended up in hospital - over 20 ulcers in my mouth, weight loss again and was barely able to speak

Jan 2012

Flare up

Symptoms went out of control and was diagnosed with Crohn's colitis

Jan 2012

Temporary stoma

Infliximab didn't work and was given a temporary stoma

Jan 2014

Stoma made permanent

Test results showed bowel was badly damaged. Bowel didn't wake after surgery and had burst artery

Dec 2014

Further surgery

Wound didn't heal

Dec 2014

Leigh proposed

We got earlier in the year (but had known him for years)

You can read more about Gemma's hair loss story here.

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I was diagnosed in 2001 with ulcerative colitis, but in 2012 after a bad flare (and losing my hair) I was diagnosed with Crohn's colitis. I have six children and am due to get married in April 2016.

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