Crohn’s disease affected my eyesight, vagina and ability to have kids, but I’m still fighting

Charlie aka my forever friend. I can’t really complain about my health in my younger life. It wasn’t until I was 16/17 that I started having a few issues shall we say.

After constant toilet trips and visits to my GP surgery and the hospital, numerous blood/ stool samples I was diagnosed with Crohn’s disease. I’d never heard of the disease and at the time it was a bit like a whirl wind over me as I didn’t have a clue what was going on, or the huge impact it would end up having on my life.

After the diagnosis things seemed to go slowly downhill. I was started on a course of steroids and I had the famous moon face for numerous months. Looking back, my chubby cheeks were the least of my worries, but at that time I had recently turned 18 and body image was a big thing.

I wasn’t very open about my illness at first because at that age the stigma attached to poo and bowel functions was no comparison to how open everyone is now about those topics. I turned to my family and closest friends and I couldn’t have asked for a better support system.

I remember on April 10th 2012 we were supposed to be going out for my best friend’s 19th to town, but I couldn’t go and I was absolutely gutted but I was in no fit state to be having jager bombs as I couldn’t even keep water down. When I wasn’t sicking it up I was on the toilet and this had been on going on for a good 2 weeks. I’d lost a lot of weight and knew something wasn’t right.

I went to Darlington Memorial Hospital and was admitted after my second trip to A&E.

I can’t remember much of my second ambulance journey ride because I was high off morphine. After a week in hospital I ended up having emergency surgery, I had an excruciating pain in my stomach like one I’d never felt before. When the emergency buzzer was pulled, I was prepped for theatre for a couple of hours and on the way down my soon to be life-saver told me that I had a 50/50 percent chance of living or dying; so I said to do whatever needed to be done.

I woke up a few days later after being put in a medically induced coma so that my body could carry on fighting when I wasn’t strong enough to do so by myself. When I was getting a bed bath I’d asked what the ‘red tube’ coming from my belly was, and I was told it wasn’t a tube and that it was a ‘stoma/ileostomy’ and that I had it forever.

So now Charlie as I call him now, is my life saver and my forever friend. In my circumstance it was a bag or a box and I certainly know which outcome I’d have rather had.

My surgeon saved my life, and I will never ever be able to thank him enough for how he helped me and helped to turn my existence into an actual life. I was in hospital for a total of 2 months, I’d lost the majority of my muscle tone and was classed as disabled so I had to learn to walk again.

I wasn’t eating and kept vomiting so I was on TPN drips and fluids to keep me as healthy as possible. Because of the lack of nutrients I was getting not only was I losing drastic amounts of weight, but I was losing lots of hair as well which absolutely broke my heart. My scar and Charlie you’d only know about if I had shown you or told you, but the fact I was 5ft 11, 6 stone and almost bald, that was for everyone to see – and the pitiful looks I received were awful.

Eventually all my hair had fallen out and I relied on wigs and hair extensions until my luscious locks grew back.

Before my hair fell out I had been blonde all of my life, so having wigs was fun because I went from blonde to brown and loved the fact one day I could be like the old Jess, and the next I could be a brunette.

So since it’s grown back I’ve definitely kept my hairdresser on her toes with lot of lovely colour changes (thank you for never getting angry with how bored I get Amber).

When someone tells you that you have Inflammatory bowel disease the first thing you think of is your bowels, so when it started to affect my eyesight, vagina and skin I was shocked to say the least. I’ve come to realise that when I’m having a flare up or feeling run down my eyes suffer from inflammation.

This first started happening in early 2015. I literally thought I was losing my sight it got so bad. I went to Specsavers because I didn’t think it was anything to do with my Crohn’s disease, and it was there where they told me I had severe scarring to my eyes and that they suspected it was down to the Crohn’s – so they referred me to the ophthalmology at the hospital.

When I went there, they confirmed that what the opticians had said had been correct and that it was because of the Crohn’s disease. They offered me different gels, and said that if it were to flare badly again to request an emergency appointment, or if I was ever on shift (because I work in the hospital as a healthcare assistant) to just go straight down and see who’s available to help.

My next dilemma was the fact that my vagina was ulcerated as hell and I had no idea why.

I’d been to the GUM clinic and they automatically said ‘herpes’ but I knew that this wasn’t the case. So I let them do the mandatory swabs and tests, and they gave me treatment for herpes because they weren’t sure of what I was suffering with.

I was in and out of there on a weekly basis because they couldn’t figure out what was wrong with me. ‘The swab results have all come back clear Jessica, but it looks so much like herpes’ they said.

My skin kept splitting and on some days it was too much to even put clothes on as my pants would just stick to me and the skin would rip, so I’d just stick to baths and my bed. I’d only just recently got a contract with work and this had started, so it wasn’t exactly the best way to say thank you for employing me as I was off for 6 months while they were trying to figure out what was wrong with me.

The GUM clinic decided to do some biopsies from my vulva and from my back passage, 6 local anaesthetic injections in total it took to get those biopsies from the front and back, it was a horrible experience. When the results finally came back I was told ‘The silver lining is that you don’t have any STI’s, but you do have vulval Crohn’s’. As if I wasn’t fed up of the C word enough already.

The doctor who was dealing with my case at the GUM clinic had said that she’d never treated anyone with this case and that she’d refer me to gynaecology and let my Gastroenterology team know. I was then put on Humira injections, an immunosuppressant drug.

Not only does it help with my vulval crohn’s but also my arthritis which is a relief.

During this diagnosis, the trips to the clinic weren’t even the worst part. I’d been with my boyfriend for 8 months by this point, but I couldn’t help thinking, ‘Well if I don’t have a clue what’s going on what the hell must he be thinking!?’

Michael supported me all the way through it then and still does now, and for that I am eternally grateful. He is my main support system and always, always helps me in any way that he can. He’s changed my bag for me before, cut it to size himself and everything.

I was very impressed I have to say.

He’s amazing and those were just a few of the points that make him so important to me.

I was told that before I had my panproctocolectomy, which is the removal of the colon, rectum and anus – I should think about having children. So we tried for a year and a half and nothing was happening.

I would occasionally be late but the negative pregnancy tests soon put a stop to the hope I had. We were referred to Newcastle Centre for life fertility clinic, they did an internal ultrasound and told me that my ovaries were great and I had the correct amount of follicles on each one. Michael did his part and it wasn’t him, so the only other option was my Fallopian tubes.

We were told that they were extremely scarred from the inflammation I’ve had and from my previous surgery. I was absolutely heart broken, it’s classed as normal and natural to have a baby and to think I might not be able to conceive when all we wanted was for a baby was awful.

When my appointment with the RVI came about having the panprocto, and my abdominal wall reconstruction surgery to remove my large scar and neaten it up, I was in a room with Michael and about 5 people all from different professions who would be having a major part in my next big step involving another operation.

I was totally put at ease with the forthcoming surgery, and when I’d asked how long it would be I didn’t expect to hear the words ‘in the next 6 months’. Luckily, I managed to wangle it down to 4-6 weeks because I said my anxiety would be through the roof waiting for that amount of time.

In that room, I was given more hope than I’d ever head during the year and a half of negative tests. They were telling me that when they do the reconstruction they were going to remove my scar tissue and that it’d be replaced with cow skin underneath. They’d pull my stomach skin together over the top and that piece of skin will become a part of me, meaning my belly would have enough elasticity for ‘when’ I have a child.

Not if I have one when. They said that because of my medical complications and difficulties I’m entitled to 3 free rounds of IVF treatment, and obviously, those words were like music to my ears.

Of course, if the IVF doesn’t work it wouldn’t be the end of the world as me and Michael will most definitely be parents one way or another, whether it be through surrogacy, adoption or even fostering.

We have so much love to give and to not share that with a child would be a total waste in my eyes.

The 4 weeks came around quick and I had my major surgery. It went as well as it could have gone and I couldn’t thank the staff at the RVI enough. It was a total different experience to my first surgery because this was elective, it wasn’t emergency. I was in and out of hospital within a week.

I hoped that was my last surgery, and that the next one would be a C section in a year or 2 if the IVF worked – but unfortunately my body had other ideas.

I kept getting large lumps in my left arm pit, but I just put them down to ingrown hairs and tried to squeeze them, but they got a lot bigger – to the point where I had to get one lanced drained and packed. They kept reoccurring and getting put down to my Crohn’s disease, but I eventually got diagnosed with a rare inflammatory skin disease that only affects 1% of the nation and of course my body had to make sure it was part of this tiny percentage!

It’s called Hidradenitis Suppurativa, it’s not actually known what causes this disease but it is linked with inflamed sweat glands so it usually causes problems around the groin, armpits and sometimes under the breasts. I have an emergency appointment with a dermatologist in November so hopefully they’ll be able to find a treatment to help my HS go into remission.

As much as this all seems like a lot of negatives, I’m glad my life has worked out the way it has, because without all of these hiccups along the way I wouldn’t be half the person I am today.

I wouldn’t have my forever friend Charlie, and I literally couldn’t be without him now. He’s a part of me, and I have someone in my life that can accept every single part of me which is an amazing feeling.

All of these diagnosis’s may be frustrating as hell half of the time, but they’ll never beat me.

I am what a walking talking invisible illness looks like, but if I hadn’t told you, you wouldn’t be able to tell.

Words by Jess Sandiford

11 thoughts

  1. A remarkable and beautiful young lady you are Jess and Michael is an amazing young man carnt wait to hear when you two are going to be parents xxx 💕 Best wishes to you both xx

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  2. Holy moly, that’s incredible…
    Here I am, severely depressed because after a horrible flare up of UC that lasted two months, I got a bit better but am now getting slightly worse… I’m literally spending a part of each day (usually before sleep and when waking up) wondering why I bother.
    Not ashamed to say it or feel it… but this is inspiring. I wish I had that kind of resolve. And I’m sorry for all you went through and are going through.

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  3. Hi Jess, have had lots of the same experiences as you and also diagnosed with hydradenitis suppurativa. Talk to your doctor about changing from Humira to Infliximab which put my HS into immediate remission. Good luck!

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  4. Hiya Jess,

    Great post, so honestly written. I too suffer with all of things you write about above. It’s a relief to know that there are other women in the same boat, and to know that my normality isn’t so abnormal after all.
    Here’s to continuing to be a medical enigma!

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  5. I admire your positivety , i wish you well for the future you certainly deserve a break , i have crohns which has affected my eyes and skin and my joints so i know how this disease can affect our lives thank you for sharing your story , you are a ⭐️ 😊

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  6. You are incredibly brave and strong woman! Thank you for sharing your story! I too have suffered from eye issues (from the steroids) and crohns of the vagina. I never knew having surgeries could affect your Fallopian tubes. It’s good to know. I also have my own concerns about having children- it’s been a concern of mine for a while- but like you I will find a way to be a parent one way or another- when the time comes. Thank you again for sharing your story! Wishing you health and happiness!

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  7. Bless you. YOU are amazing darling. I have had Crohns for 23 years and had a temp stoma which was reversed quite quickly. I also suffer with my eye sight which doctors say is bit connected but I no dif fervent.
    I also have lumps like bites up my vaginal that become very sore when I have ntercourse . HOPE u good health and lots of love sweetheart xxx

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  8. Your story is so inspiring i don’t even know you and u make me feel so proud of you you are an amazing woman you have a brave spirit and a brave soul thank you for sharing your story my sister suffers from UC and everyday is a battle she is my Hero i just wish i could help more i pray every night that some one finds a cure for this sickness i just want my sister and everybody to be free of pain!!!!

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