Let’s Talk Shit Today
Where did my journey with Crohn’s Disease begin? Who knows! My then consultant one told me I may have had it all my life, but something triggered it in my mid-late teens. I remember a trigger, a moment I look back on now as the starting point of this long and often debilitating journey. At 17 I was a pretty standard, outgoing teenager and in attempt to be a part of the crowd I tried marijuana, who knew it would cause a massive allergic rection!? Within an hour I was covered head to toe in a hot, itchy rash, my ears, eyes, fingers, lips, toes and other areas began to swell. A trip to the A&E, an injection in butt cheek and home to a very unimpressed parent, I learnt my lesson. But that is where I start this journey. From there I became more and more unwell. Until this point, I don’t recall even ever having dioreah! But the Crohn’s kicked in hard and fast, I went form a healthy 10 stone to 5 ¼ stone in about 8 weeks. Returning to college after the summer break was difficult and everyone saw the huge difference. That was the first time I was aware of the comments made. Jane, a mature student in my class said “Oh no Fran, you’ve taken the diet too far” and as the vomiting became more often and the trips to the bathroom more frequent the rumour mill started churning and spat out how I had an eating disorder; I was an attention seeker; I bought it on myself; an addiction to laxatives, and more of the same.
Two years from the first allergic reaction, two years of battling, two years of pain and embarrassment, two years of misdiagnoses, two years of invasive testing and I am sat in the consultant’s office with my nan (my hero) with a diagnosis. I had trouble initially understanding Mr Walter Melia, not so much what he was saying but his thick Irish accent, luckily his assisting Nurse, also Fran helped with a ‘translation’ I’ll never forget her, she was all of about 4 feet 2 inches, short hair with hearing aids to each ear, the warmest smile and a smokers cackle of a laugh. She clasped two cold hands on either side of my face and said, “Don’t you worry Fran”. Two weeks later I would turn 18. 1998. The year we had dial up in the home office. Just jumping online and getting a ‘Dr Google diagnoses wasn’t really something that was done, so I left the hospital with a bunch of a leaflets, another prescription to try and a head full of information that I didn’t really understand! What I did understand was that this ‘illnesses were for forever, there’s no cure. When I told family, the question everyone asked was “So what happens next?” – I didn’t know. No body seemed to know. I started the medication, Pentasa, Omeprozole, antibiotics, steroids and watched my emaciated body change. Still too skinny but now with a bloated face and a pallor complexion, sunken eyes and my once thick, bouncy curls were fine and limp. My periods had stopped long before and my skin was dry and developed large scabs that just wouldn’t heel. Between my appearance and the fatigue and the pain and the constant trips to the bathroom, I stopped leaving the house. I felt imprisoned by this disease, and it drove me to distraction. Too tired to fight it I gave in and just waited for it to take me, not that you can die ‘of Crohn’s’ just of the effects of Crohn’s.
Surgery number 1 finally came with on 1st February 2000. 4 weeks in hospital. The funniest hospital stay I ever had. On a mixed ward, with drafty open hallways, nurses who seemed to of been trained during the war! And then…my period came back!? Heavy, hard and painful. I had miscarried and had no idea I was even pregnant. I had been on birth control, but as I know now, when your body can’t even keep food in, can’t take on the nutrients from food due to the inflammation, there’s little to no chance that the mini pill is being absorbed. Then, I took a sigh of relief. At 18, a baby was not on the list. Now, I wonder what the 23-year-old would be like.
I had a bowel resection; this was a step to recovery, but I was young and naïve, and I was sure this was a second chance. It was a second chance, and I took full advantage of it! I recovered with ease, proud of the staples that held me together. I took a job as an 18-30’s rep and put my body through gruelling 16-hour days, fuelled by lip-gloss and Red Bull, and then, it was back. But this time was different. Still the pain and the frequent toilet trips but the pain was much further south. A year passed, my weight dropped, and I knew I was in trouble again. This hospital trip was different too, it was urgent. I woke in the middle of the night, dripping with sweat which I put down to the flu I had been suffering with, I dragged myself to the bathroom yet again, sitting there with tears rolling down my face in pain there was a sudden bursting sensation and the pan filled with blood and mucus. Bundled into an ambulance I was rushed to hospital. All the usual questions; are you pregnant? Have you taken any recreational drugs? Have you taken any prescribed or over the counter medications in excess? Have you damaged yourself purposely? Have you been assaulted? After all the prodding and poking and cannulas and blood test I was more exhausted than when I arrived and again I need the bathroom, the nurse helped me to stand as the doctors discussed their notes and again, without warning or control, more blood and mucus fell from below my hospital gown to the ground with which I collapsed. When I woke, who knows how long after, I was told I had pneumonia (not flu) and tumours in my rectum needed urgent surgery. Dazed, high on morphine and resigned to any thing must be better than this I signed a consent form, the surgeon and anaesthetist visited, the priest even popped by which is never a good sign. I don’t remember being wheeled into the operating theatre, I don’t remember coming round, but I remember 3 months after recovering. I had to be fitted with an NG (nasal gastric) feeding tube, I was so weak and unwell I was bed ridden for the first 8 weeks and then when I was able to get out of bed I had to learn to walk again, first with a walking from, then a walking stick and finally on my own.
While I was in hospital, mostly sedated from pain relief the person who claimed to be taking care of my finances, my work, my studies, for me, hadn’t been. When I eventually came out of hospital I found that they had been using my car and my bank account as though they were their own, I was in debt, close to loosing my car and my bank account had emptied, and all this was by the person I trusted to look after me while I was at my most vulnerable.
During this hospital stay I was given a ‘day leave’. A day where I could pop home but had to come back that evening. I had been so excited to get out of the hospital, even for just a few hours. I got home and went from room to room. It was musty smelling and dark, as if the door had been closed the day I left and forgotten about. Nothing had moved, nothing had been taken care of. Post mounted up, unopened except the occasional get-well card that I had never seen. I had a sudden tightening in my chest, the room span, and I had to sit down to catch my breathe. The nurses were shocked to see my return so soon, I had been gone for a total of 45 minutes.
The next 2 months were the hardest, returning home, still fed through a tube that went up my nose, down my throat and into my stomach. I had to be weaned back on to a ‘normal’ diet. I had never realised how you could miss such a simple thing like chewing, I craved the craziest things such a cucumber and crusty French bread. I was recovering from what would be the most invasive, painful and embarrassing surgery to date. I still had stitches that would get caught in my underwear and eventually would just drop out, on one occasionally a stitch literally dropped off and slid down my trouser leg and on to the floor. I quickly scooped it up in a tissue and weirdly kept it (after cleaning of course) for YEARS! I’m sure Sigmund Freud would have something to say about that!
From here I took my health much more seriously. I took care of me. I took my medication strictly on time regardless, I kept to a strict diet, never straying from what I could tolerate. I managed my exercise regime; I ensured my sleep pattern wasn’t disturbed. I kept my mind active and positive. And I did all this for fear of falling ill again, but falling ill wasn’t my biggest fear anymore, relying on someone and being betrayed scared me far more. I was never going to let anyone take me for granted again, I was never going to lose again.
And it worked, for a while.
In 2008 with the man, who had been by my side, supporting and loving me, through so much of what I had been through, and I fell pregnant. It was never meant to happen, but we tied for a baby any way and we were blessed to fall. Elated and excited we made tentative plans, on a holiday (booked before the pregnancy) to Tunisia we picked names for a boy or a girl, but I knew I was having a boy, I could sense it.
Returning to work after our holiday, things all seemed to be going well, but it was short lived. Nineteen weeks into the pregnancy, I woke on a Wednesday morning, and something wasn’t right. It was a strange feeling that I thought was indigestion, after an hour it was severely painful and my now husband got me to our GP. The pain was a surreal mixture of indigestion and constipation. Doctor Doyle’s face was ashen as he rushed to listen to my abdomen with his stethoscope, he shook his head and said “Franki, there are no abdominal sounds” He wrote a letter that I was to hand in at A&E. From there everything moved quickly. From A&E I was quickly moved to a ward, a side room was made available for me as an ‘at risk’ patient. The gastro-consultant came to see me with a gynaecologist specialist. The pain increased and breathing became laboured, and then the vomiting. Anything that I had still in my body had been pushed back up from the bowel through my stomach and out. I cannot explain the smell, taste or sight but it was stuff of nightmares and horror films. I remember my husband on one knee with a ring and tears in his eyes, “…so this isn’t how I had planned it, but. Ill you marry me” the ring slipped on my finger, and I was wheeled away to surgery. A gruelling 6 or 7 hours of waiting for me to come out of surgery, with the warnings from the surgeons that he would at best only get one of us pull through in the back of his head, Mal sat holding my beautiful engagement ring. And yet, we pulled through, but this was not the time to take a sigh of relief. Recovery was going to be slow and more of strain than the pregnancy ever was. The bandages were tight, and I had a neat incision centrally between my hips, up and around my belly button, stopping in line with the bottom of my rib cage. On first inspection the nurses called the doctors, and I developed an infection, due to this I was ‘laid open’, a wonderful term used to unpick the stitches and let the wound sit open. It was dressed in gauze and micropore tape. Again, bed ridden, not even to use the bathroom I developed a swelling between my legs, a collection of fluid where I had been still and pressure was pushing down, I called for a nurse, concerned, she was rough and showed no concern for my dignity, humiliated and made to feel like I was wasting her time I was glad to be discharged.
The nurses came daily to change my dressing, there were many variants. As my bump grew as did the open wound. At one point it was 14x 12 inches and in places an inch deep, and the decision was made that I would need a vac-pac fitted to promote tissue growth and bring the scarring up to a more natural level. A vac-pac is a heavy-arse contraption much like a vacuum that is stuck to your body via a coarse black sponge. The sponge would need to be soaked and peeled away every other day, taking away any tissue that had not been viable. This went on for weeks and weeks. Discussing our pregnancy was kept with just Mal and I, people avoided the topic or avoided up all together.
My pregnancy was a breeze, and I tell people this. I cherished every kick, every scan, every heartbeat. Finally, the day came for our baby to be born. 6lb 13oz, jet black hair and big blue eyes. Absolutely beautiful. Perfection in baby-shawl.
With the baby born I was put on a ‘new’ drug, I had heard about its years before, but it was still in the trial stages, now it was available, and I was a good candidate. Infliximab, every 8 weeks and likely for the rest of my life. I was up for that it made me feel better. And it did. It was like magic! And we had a second child – to many people’s disapproval, comments made about how selfish I was to put Mal through that again; how could I risk leaving a child without a mother…
The Infliximab was wonderful, I was able to live my life to the fullest. Still sticking to the strict diet and medication rituals but with little pain and fewer incidents. Due to the surgeries, I am left with short bowel syndrome and very little control, this is expected when the sphincter has been all but removed and now with two bowel resections under my belt (pun totally intended!).
The stigma of having a bowel disease still lingered and the comments of the insensitive and uneducated continued. One of the most spiteful I heard was at a funeral of a member of Mals family, in the garden of his family home while the guests were mourning it was said “She only looks that way because everything just passes through her” by someone who has seen my struggles, witnessed the torture I have been through. And this was said in response to someone complimenting how well I was looking with two young children, a husband away in the military and, of course, ‘what I had been through’. It was there and then that I knew I needed people to know ‘that’ was not ok, I stood up for myself. I told the woman while she smirked, believing she was so important and had shamed me, with a sure and proud voice; “You’re wrong. That is not ok” the smirked soon faded and the group she was with shuffled and whispered away. I had verbally wiped the smirk from her face, and it felt good.
From that moment I knew I couldn’t let anyone make me feel like such a disappointment. I had been through too much. And I went about researching how I could have my voice heard. I came up with a hashtag #noscarcanstopme What does it mean? It means no scar, no matter if from the surgeon’s knife or the sting of spiteful words will ever stop me. They can’t stop me raising awareness, they can’t stop me in what I aim to do, and they can’t stop me from living the most amazing life. On this journey I was so proud to raise money for Crohn’s and Colitis UK, with the help of friends with a sponsored quiz night. Our good friend Major Mick Wellborn who has sadly passed asked the questions and my friends, my military family bought the smiles, but that wasn’t all. I decided that a great way to raise money was to do a tandem skydive, jumping 15,000 feet from a plane. I’ll never forget the shear fear and adrenalin that took hold as I left the plane and the moment of landing on the ground, an absolute rush of relief. By far an amazing experience and probably never to be repeated.
Years passed, moving around the UK with the military, it was on what would be Mals last tour that I fell ill again. Not directly due to Crohn’s or IBD, but as a side-order, if you like. On the 27th Of May 2017 (the day I write this article) I had torn a calf muscle, no big deal in the grand scheme of things. The doctor gave me crutches and paracetamol and sent me on my way. I sent Mal and the children to France for the week while I stayed at home, what harm could I do in the house? The evening that Mal sailed off to France I started to feel rather unwell. My sister had called and asked to visit but to told her I was feeling a little under the weather and not really much company. I don’t know how much time passed but I remember waking on the sofa needing to pee, but I could get up. I called my sister back and asked if she’d come over and give me a hand. While waiting for Jess to arrive I somehow managed to get myself to the toilet, or close to it at any rate; I woke up looking at my feet, I didn’t understand why I was lying on the floor in the hallway. Jess came with take away but as hungry as I thought I was, I could stand a single bite. Jess commented on how hot it was and yet I was freezing in socks, sweatpants, a hoodie and under a think blanket. Jess kept saying how she wanted to call the doctor, but I waved her saying it was probably just flu. Eventually Jess called 111 [13HEALTH equivalent in the UK] who suggested that we check the leg with a torn muscle, we had to cut the trouser leg and sock away. It was massively swollen and a strange colour, Jess described it as looking a little bit like a rasher of out-of-date bacon. The lady on the phone said we needed to get me to A&E. I explained to Jess where my emergency hospital bag was stored in the top of a cupboard in the spare bedroom, she was shocked that after all these years, I still had a packed hospital bag, but old habits die hard eh? At the hospital I remember Jess having to stop to find a porter to help get me from the car and being wheeled into a bay. I don’t remember much, I felt like I was only there for half an hour or so btu my sister filled me in on the details. We were there all night; I was drifting in and out of semi-consciousness. I do remember the nurse talking loudly, close to my face, in her strong Newport accent “Francesca. We are moving you to rescuss’. You look deathly” to which I replied, in my hazy state “OK love, that sounds nice. What happens there?” And I don’t remember much else. The next morning, I was in a special care ward being pumped full of “the strongest antibiotics here are” to treat the cellulitis that had taken hold in my leg. The pain was pretty bad, as though burning hot spike was being driven through my heel and into the bone of my lower leg. The swelling on my leg continued to spread. I was in hospital for two weeks, Mal headed home with the children and had a hectic week while I was in hospital fighting the school run, hospital visits and working. Eventually I was given the hey-ho and told I could go home, but first the OT would visit to get me going on my crouches. Now, being woken from a morphine induced sleep by a good-looking physiotherapist with a slight stammer isn’t ideal. He started with “Franki, Wakey wakey” one eyed opened as I peered at him, the eye closed and he kept talking “I-I-I just need you to c-c-c-come…for a moment” eyebrows raised, both eyes open, I reply “Nope” but he persists, “I – I just need to get you on my crouch…es”.
Eventually I am sitting on the edge of the bed with a nurse with a temper telling me “I’ve got ladies 60 years older than you with cellulitis in both legs and they’re still walking around, not complaining as much as you”. I don’t know if it was her intention to annoy me so much to get me moving but it worked! I snatched the crouches up, positioned myself and shifted around the bed, I wanted out of there. However, it seems that the combination of me having little to no co-ordination and the fact that crouches are harder to operate than you’d imagine I ended up falling off my crouches. Bother legs in the air, flashing the very bare under carriage from beneath yet another hospital nightie, landing on my butt and banging an already sore leg against the metal hospital bin. It hurt, I was angry, and my bits were on show. I don’t know which part of this scenario annoyed me more. However, I was now on my way home. The weekend was quiet, and I slept most of it. But my freedom was short lived. Monday morning, I went to the GP for a post-hospital visit, he hadn’t even said good-morning before he said, “I’m blue-lighting you straight back to hospital”. I had an ultra-sound on my still swollen leg, not hugely comfortable. The sonographer was chatting away about what I had done, about Crohn’s and hospital stays and then he just stopped and frowned. [eye roll] I’m thinking, ‘and here we go’. He tells me he’s not sure what he can see but I find myself on yet another ward with my own room and the head nurse looking after me. They take my temperature every 15 minutes and I’m attached constantly to the monitor. After what seems like hours and a hundred vials of blood and urine taken, a team of doctors entre and I’m told I have an internal bleed where I banged the leg and have developed sepsis. I felt strangely calm, or at least I thought I was. Maybe I was so out of it, I couldn’t tell? I was prepped for surgery and there was a risk I could lose my lower leg if I make it through.
I don’t remember much of the days after surgery but looking down the bed and seeing my bandaged leg on a frame at the end of the bed left me in tears, and not subtle Hollywood movie tears either, these were big, heavy sobbing tears with snot and hiccups, kind of tears. That night they would open up and was back in theatre to have the wound ‘cleaned’ out. The infection was removed, more strong antibiotics and pain relief and a week later I was heading home in a wheelchair. The wound was left open as it would need to heal from the inside and so was ‘packed’. This means that sterile gauze is posted into the wound as deep as possible. This packing had to be removed before leaving hospital, I helped the nurse and after 55 minutes and who knows how many ml’s of morphine later, I couldn’t do any more. We sat for 10 minutes before we started again, already there was easily 6 feet of packing, and although the opening was only 2.5 inches long the packing travelled up my outer lower leg as far as my knee. I took a deep breath and held the bed sheets, and the tweezers took hold of the gauze poking from my leg, I fully prepared for reams of fabric to be pulled from my leg and the tweezers pulled, with clenched teeth and a steely determination a disappointing two inches dropped from the wound. The nurse and I laughed at how measly it was for the fuss I had made.
The stress out on my foot caused it lock into a downward facing position, much like a pointed toe of a ballerina. Unable to pull the foot back, or ball up my toes, walking on it was a definite no-no. What followed was weeks of dressing changes, Mal has become quite the pro’ at dressing-changes, daily foot massages and manipulation, again, Mal has mastered the task and weekly physio appointments with daily physio exercises.
As I became more mobile and still house bound, I would send Mal pictures of my foot in different places around the house, in the upstairs bathroom or outside in the garage.
How is this indirectly connected to an IBD? Well, Crohn’s has left me with a supressed immune system, I had a slight cold when I tore a calf muscle. It is possible that the cold virus attacked the weakness in my calf muscle, my body wasn’t strong enough to fight it and it developed into cellulitis and the bang from the fall at hospital lead to the sepsis.
…emigrate to Australia. Mal’s brother and mother had already moved there, and although I was not keen, leaving my Nan in the UK, with her blessing we started the process. It was at this point that I was given the news that I was in remission! Elated! Ecstatic! No more need for Infliximab. Coming off the Infliximab should have felt good to me, and eventually I realised that it was a blessing, but as we stopped the treatment, knowing that I would never be able to go back to it was terrifying. What if they got it wrong? What if this was a mistake? Fortunately, it paid off.
And now? 4 or 5 years of remission, living my best life in Australia. I have been blessed to have met some amazing people, of course there are still those with their negativity and spiteful comments of how “she’s a picky eater you know with all her problems” and when I don’t show up to a social event “oh she’s probably got the shits” but these people are not cu from my life. I had to cut these people from my life, they still find ways to pass judgement though. Most recently I was absolutely honoured to be titled FBME Miss Inspiration 2022. FBME (Fit Bikini Model Education/ experience/ empowerment) is a pageant, but not just about who has the best body and perfect smile. This is a sisterhood of open-minded women of all different ages, body types, ethnicities, but with one common interest; to stand tall with the sisters and show every one that we are strong and will educate, encourage and empower one another and those around us that each and every one of us is worthy of a crown.
How did I get to this point? Well, it was a decision fuelled by the courage of wine and seeing not one but two friends before me entre and thrive! They cheered me on when I said I was thinking about entering; they stood by me and cheered more as headed toward pageant and they cheered for me as I took the stage. Would I have ever of considered standing in front of huge room full of people in a bikini before this? To take up modelling. At 41!? And yes, there were smirks and eyerolls at my choice to entre, and even after being titled Miss Inspiration these people still can’t congratulate me, but I did it and I did it well! Those sniggers that they thought I knew nothing about spurred me on to prove them wrong. I took to the stage to show that “no scar can stop me”, I took to the stage initially with a selfish intention to see if I could. I wanted to show that with my scars, with my dietary requirements, with the strains on my body, I could still be strong both physically and mentally, that I could be beautiful both inside and out, that I could be confident from my smile to my core. I developed confidence and strength that I had lost over 20 years ago. There is no greater boost to your self-esteem than a group of tender, fun, caring, enthusiastic and positive people, each one part of your cheer leader squad, and you theirs. Photo shoots that I would never have considered have become easy to me, the negative comments that are made are met with a shrug and sometimes pity for what they don’t see in the pictures.
But as the journey came closer and closer to pageant the reasons for entering evolved, I realised I didn’t just want to show that I could do, I wanted everyone to know that they can do it, I could use my voice to get the message out that having an IBD doesn’t need to be a taboo subject, that we, as a collective of people with IBD can stand tall and proud, proud of our scars, each one a medal of what we have survived and endured, and tell our tales of heart break and success.
My outlook on life has changed, evolved, grown, call it what you will but I know this life I have now is better and improves with each day. My body is mine and it amazes me every day. My body has been through so much, it has grown life; repaired itself time and time again; and it continues to impress me. I have vowed to look after my body as it has looked after me. I was blessed with a strong will (some may call it a stubborn streak) but that strength has helped me battle negative thoughts without medicinal intervention, and it would be ludicrous to say there haven’t been dark times over the years but I am a firm believer that the mind is strong enough to send a person to depression, why can’t that strength be used to be positive. This is not to say that those who are receiving assistance for their depression are weaker, we all have our own tactics for battling each day.
My Crohn’s, and I call it ‘my Crohn’s’ to take ownership of it, it is individual and unique to me. There are no two cases the same no matter how similar they may seem; My Crohn’s is in remission, but I am not so naïve to believe that there isn’t the chance that it could rear its ugly head at any time. And being in remission is not a golden ticket to say I can carry on as I please. It gives me some freedom, but I am still restricted. My diet and my need for toilet facilities. I spoke on a TikTok where I have another hashtag #letstalkshittoday, where I talk about places I get to visit as part of my job, namely Bunnings, Ikea and Officeworks, I talk about how I love the choice and range of products, but the best part of these shops and a few others is the ease of access to the toilet facilities. It is time to be able to talk openly and at times comically about IBD, about the ups and downs, to be able to educate people so they have a greater understanding, to lift the stigma. If we can talk about it openly hopefully more people will feel more comfortable about talking to their doctor when their toilet needs change, the earlier we talk about the better chance of getting a diagnosis before the disease goes further. Early diagnosis could be the different between surgery or not.
To those waiting for, or in early diagnosis; this is not a life sentence. As humans we are flexible, we adapt to our surroundings and can grow from it. To those in a flair, it is tough and there no words I can say that will make it better but know that you are not alone how often you feel you are on your own. To those in remission, you have been handed a gift, a voice, a choice- use it. To everyone, stay strong, stay true. This illness does not define you; it is a part of you – you are not a part of it.