This time last year, I didn’t know much about crohns/colitis or what ibd was. Little did I know that my teen, Molly, was already becoming unwell and that our lives were going to be thrown into turmoil.

Take back to September 2020, the world was opening up again after the first lockdown, and Molly was returning to school and her favourite past time – dance. A day in school was leaving her exhausted and she really struggled with going to dance after school. She really had no energy. Then she began to mention some nasty stomach cramps but as they seemed to tie in with her periods, we presumed that was the cause. Molly mentioned to me in December how she loved her figure and how she could now see her abs. She said she wasn’t dieting but she was loosing weight and was very happy with that
January came and the cramps were now lasting for much longer than her periods so our Dr (without seeing her) put her on the pill. By now we were in another lockdown and Molly had no energy at all, and I thought it was because of not being able to go out.

Early February Molly says she has frequent toilet runs and doesn’t always make it. Oh she’s got a bug I think. But then she can’t eat more than a few mouthfuls of dinner without dashing to the loo and being in a lot of pain. I call our gp who says she needs to be seen. We saw a nurse who prescribed something for the cramps and orders blood tests. He examined Molly’s tummy and that really set her cramps off.

I really had to sweet talk Molly into having a blood test, she was so scared, but she was pleasantly surprised as to how easy it was. By now she was worrying me even more as she couldn’t walk upstairs without getting breathless and she was dizzy whenever she stood up. The next evening I received a call from a Dr telling me her blood results and he sounded very concerned. Her inflammation markers were very high, but everything else was really low, and she had anemia. He referred her to hospital the next day.
At our local hospital they took more bloods and mentioned Molly might need to be scoped both ends, this sent her into another panic but they promised she would be put to sleep for it. They began asking questions like do you get night sweats? Do you get mouth ulcers? Anyone in the family with an ibd. Yes!
Our local hospital referred Molly to Southampton where the experts are.

They saw her the following Monday and booked her in for an urgent scope on the Saturday. When we walked out of the hospital Molly asked me if she might have cancer because she was surprised at how fast they were investigating her. How do you answer your child, when it’s gone through your mind already.

On the Friday Molly had to take her bowel prep. She cried as she drank it saying it would make her sick, and I felt like the worse mum persuading her to take it. Two hours later, she’s writhing in pain, feeling faint and vomiting.
I called the hospital and they wanted to admit her. They had to try several times to get a cannula into her and to take blood because she was so poorly. This is the girl who not more than two weeks ago was so nervous about having a blood test. Now she was nailing it!

Next day she went to theatre to be scoped both ends and after what seemed like an eternity her consultant came to see me and told me that Molly has severe inflammation in her small bowel, they have taken biopsies and he is sure its crohns. I am taken to Molly in recovery and she cries when I have to tell her she has to stay in. Why? Because its Mother’s day the next day and my presents were at home. All I wanted was to get her well.

Later that day they started Molly on steroid infusions twice a day. Molly’s blood tests kept coming back saying she was dangerously low in phosphate which was caused because her intestines hadn't been absorbing efficiently. 
She also needed an iron infusion.

 Molly was discharged on a high dose of oral prednisolone. She had to take them early in the day as they made her hyper, they also made her ravenous! Side effects of steroids- a moon shape face, weight gain and acne. Poor girl suffered the lot. But she was beginning to feel a little better.
But then the dose was reduced and her symptoms got worse again. Her consultant started her on a powerful drug called azathioprine but it would take a few months before she felt the full effect of this drug. Side effects – it lowers immunity and makes her skin super sensitive to the sun. It also meant weekly blood tests.

Molly then had to have a mri. For this she had to drink a litre of contrast and have another cannula.

The results of the mri revealed the inflammation hadn’t gone down at all and it was further up her bowel than they had realised. She needed more treatment and it was decided that she now needed infliximab infusions as well. Another powerful drug that wipes out immunity and requires regular blood tests.

Molly remains under the care of the paediatric ibd team at Southampton General Hospital where she receives excellent care and support.

Currently Molly remains on 6 weekly infusions in  hospital and takes azathioprine daily. Two potent drugs but they are working together and Molly is at last feeling better. Obviously not having a working immune system with the world how it it is, is frightening. Infliximab infusions really wipe her out for a couple of days each time, so we plan things around her infusion dates.

Exhaustion remains a huge problem, so she now has to space activities out, she can easily sleep 16 hours at a time.  She still has sudden toilet dashes, sometimes as soon as she has eaten something, and she does get cramps but they aren’t as frequent or as severe thank goodness. Her hair is also thinning.
But she’s back at her favourite theatre, doing musical theatre and having pointe lessons 

We have had a lot of support from some friends, some friends now sadly keep their distance. Guess they don’t understand the full extent of crohns and think its a tummy bug or ibs. They think all she needs to do is change her diet (if only) and that it is self inflicted. They don’t realise this is a life changing, life long condition which can effect people physically and mentally. This isnt going away, this is Molly's life. Thanks to the research done by the crohns and colitis charities, she can have more control, with medication and an understanding over her illness.

Crohns is when your gut attacks itself and can occur anywhere in the digestive track. Dancer Amy Dowden is a crohns warrior 

Anyone who knows Molly knows how she loves a challenge and raise funds for charity. She has decided to abseil down the Spinnaker Tower in Portsmouth; the tower is 170m high and the abseil is 100m. Luckily she isn't doing it alone as her 2nd Mum, Jodie, is doing it with her.

So on May 14th at 3pm Molly and Jodie will be taking in the views of the Solent while abseiling down the outside of the tower.

Please feel free to come and cheer her on!

Photography by Dani Geddes 💜💜💜

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