Welcome to our first guest post on the new living with illness series. This story in particular is very close to my own heart as it shares just how debilitating gut conditions can be. And it’s SO important that we talk about these things, to normalise them, to help people understand that ilness can strike anyone at any time of life, and that invisible illnesses in partircular are a very real factor of so many people’s lives. As always, I’m so grateful for everyone’s commitment because it is such a personal subject to open up about. Please do read, leave a comment and share as much as you can, I’m really willing this to grow and grow so that we can help as many people as possible who may be going through something similar.
We Are : Fi, 37 & Guy, 52
Home Is: Warwickshire
We Do: I’m a regulatory manager and Guy is a stay-at-home Dad
My husband Guy was a farmer, a stereotypically manly man who did not believe in having a day off sick. That all changed in the months leading up to him turning forty, twelve years ago. He had a few bouts of agonising stomach cramps and sickness and naturally of course he ignored this and would struggle on with work – those fields weren’t going to plough themselves after all!
After a particuarly bad episode, I forced him to a GP appointment but sadly, thanks to the patient downplaying symptoms and the GP reviewing his less than healthy lifestyle, nothing more was done. That was until one night and him ill yet again, I lost patience and dragged him off to A&E. After tests, and a visit from the surgical team and still to date my favourite ever drugged up Guy line in a shocked voice of “he just stuck his finger up my bottom”, more scans and X rays, we had our diagnosis. Guy had Crohns disease*.
*Guy is now very used to things being stuck up his bottom as a result of having Crohns, just comes with the territory. By this I mean colonoscopies, not anything like marmite jars.
Unfortunately, it had become too bad to be treated by medication and so surgery was the only option. By the time his operation at Northampton came around, he was down to eight and a half stones, and was living on Angel Delight as nothing would fit through his ulcer riddled large bowel. His bowel had also swollen up so much that it had fused itself to his bladder so he really was in a sorry way. After a successful operation, and a swift recovery, Guy was back on the tractor, feeling just great.
We had five years of good health, with just a large abdominal scar to show for it. We moved to Buckinghamshire and were lucky enough to have two boys. As they approached the ages of four and one, Guy suddenly started becoming ill again.
Once you have Crohns, you always have it – there is no forever cure. With Guy, they had removed the infected part of his bowel and then technically he was Crohns free for the time being, but it will always reappear in the same spot, so around his re-sected bowel. He was started on immunosuppressants and steroids but to no avail. After five emergency hospitalisations at Stoke Mandaville for a week at a time over about three months, it was decided that when he has a Crohns flare, it was too severe to treat and another re-section was the only way to sort him out.
Unfortunately this did not go as smoothly. Basically during a bowel re-section, they are cutting out a manky bit of hose pipe and then attempting to stitch the two pipe ends back together without any leaks. Guy sprang a leak, and so about five days post surgery, they had to rush him back into theatre and open it all up again, wash out all the nasty bowel contents that were floating around where they shouldn’t be and ensure there was no infection. At this point, there was no option but to give him a stoma, which is where your intestine comes out through your abdominal wall and waste is collected in a bag.
As a result of his low immune system thanks to the immunosuppressants, he picked up an infection called invasive candidiasis. This is where the yeast that we all have on our skin got into his blood stream. It then moves around the body attacking organs. Guy’s lungs, brain, eyes, heart and kidneys were all attacked by this infection and he was transferred to Oxford for more specialist care, first to John Radcliffe and then onto Churchill hospital.
In total, he was in hospital for three months, most of which was spent an hour’s drive away from home. Our boys were both in nursery and I was still working full time, although fortunately as I work from home, had a great deal of flexability and worked for a very understanding company. Guy had also taken redundancy due to ill health before he was admitted, and given that our house was a tied cottage with his farming job, we had to find somewhere to live. Just before he was taken into hospital for the beginning of this long stint, we had made an offer on a house near our parents in Warwickshire. So while he was absent, I had to carry on with the house purchase and the packing up of our worldly goods.
Now I’m not one to indulge him when he’s whinging about being ill, but he was really very poorly for quite some time. Happily, due to the absolulely amazing NHS that we have, and what I like to consider my own A star bedside manner (basically lugging the boys to the hospital to terrorise the wards while I just sat telling him how tired I was and if he didn’t want that chocolate eclair, I would eat it for him) he pulled through. As is the way with doctors, we never knew just how ill he was. I never questioned the fact that he wouldn’t come home, it was just a matter of when. However when he was finally discharged after three months in hospital, the doctors admitted that they hadn’t thought that he was going to make it home. But he did and all was well. As soon as he was discharged from hospital, we were off to Warwickshire, following just one dicey moment when I had just finished emptying the loft, and nearly decapitated myself in an incident involving a very heavy box and the loft hatch.
Guy was quite understandably very weak for quite some time after this. Another long lasting side effect of his candidiasis was that his kidneys were permanently damaged, and so he now had Stage 3 Chronic Kidney Disease (CKD) as well. This on its own would be quite manageable, but we found that it did not mix well with a stoma. He would lose a lot of fluids and minerals through his stoma which caused his poorly fuctioning kidneys to play up. He had also by this point developed an incisional hernia in his abdomen due to the surgeries, and so a year later, he was back in Coventry hospital for a stoma reversal and hernia repair.
Sadly, as happened last time, the reversal did not work, he had to have more emergency surgery and a new stoma created. This time, just for a bit of variety, he caught sepsis, and spent another month in hospital. Yes, you are correct, I do pay a fortune in hospital car parking.
Of course, this stoma still had to be reversed as his mineral levels were rocketing. You never really consider all these minerals in your body as having any importance until you, or someone you know, becomes very ill from either having too much or too little of one of them. His hernia was also back with a vengence and he looked like he was just days from giving birth. It was decided that he would be referred to a specialist in London who was more practised at large abdominal hernia repairs.
A year on, after giving his poor body more time to heal, he was admitted to UCLH for what felt like operation number 487. All went well this time, hernia was repaired, stoma was reversed, Guy clearly decided no more drama was needed and after three weeks in London, he came home in time for Christmas. Happy days!
Well of course not quite. Now that his pipework was all reconnected, the Crohns came back again. His kidneys were doing well, but he was now back to the urgency and stomach cramps of Crohns. He was started on a number of treatments, trying different biologics which didn’t seem to help. He was then put on a clinical trial, which did seem to give him some respite, but gradually it became worse. His hernia repair failed again (I know, am sounding quite broken record like) and he was referred to another specialist surgeon at the QE in Birmingham who had a new method of repairing hernias of this size. So in Decemeber 2018, a week before Christmas, off to Birmigham he went. The plan was to remove the Crohns infected bit at the same time as doing the repair, as the surgeon said there was no point in him doing a fantastic repair job if they then had to go back in six months later. His bowel was once again in quite a sorry state so they gave him another stoma, the plan being to let it heal first before being rejoined, due to Guy’s rather poor track record of leaks.
As the broken record goes, once his Crohns was sorted out and he had a stoma again, back came the kidney problems. After just under a month in Birmingham, Guy was allowed home. This had been our first time of Guy not being at home over Christmas and I did find that hard. My priority was making sure the boys had a good time, and my parents and friends were a fantastic help.
After being discharged from Birmingham in January, he then spent a total of three months of the following six, in and out of Coventry due to his kidneys and poor mineral levels. He also managed to miss out on an entire half term’s worth of school runs, so every cloud and all that.
Eventually they sorted out an outpatient treatment programme for him, where he would have a blood test every week to check what his mineral levels were, and then come back for infusions to top him up. This kept him out of hospital as an inpatient until they worked out how to keep the fluid in his body long enough to be processed by his kidneys.
Gradually over the last six months, his mineral levels have all improved and he no longer needs the weekly influsions. He is now (once more) waiting for a reversal because whilst he would like to keep his stoma as it prevents his Crohns symptoms from recurring, his kidneys have deteriorated further over the last couple of years and his renal consultant has said a reversal needs to happen.
As a family, we spend a lot of our time waiting for the next operation. Plans always have to be based around the possibility that Guy might have to go into hospital. The boys have grown up thinking it is quite normal for their father to be away, and hospital visits are just a way of life. When we first moved to Warwickshire, I started running as I realised that Guy was never going to be fit and well enough to be the parent who could play football/cycle/run around with them, and I felt that they deserved one parent who could do that. I started doing the C25K and have carried on running ever since. I raised money for the Crohns and Colitis charity group and while I was doing my training for the marathon, tried to raise awareness about the condition to help our friends and family understand more about the condition. Yes, there are far worse and horrible diseases that people have to suffer through, and we do appreciate just how lucky we are that we still have Guy here, and he is still mostly ok. But IBD is not just having the trots more regularly and there is still this stigma surrounding it because you have to talk about your toilet habits! Believe me, with a Crohns sufferer, two boys and a mountain dog in my house, I deal with more poo than I ever thought I would have to, and it really isn’t all that bad. I believe that the more it becomes the norm to discuss this kind of thing, the more likely people will be to get help if they think something is wrong.
I am so grateful to those people who donated blood that Guy has received over the years and I always donate on his behalf, to give back. I am grateful to the NHS for always patching him back up and sending him home. People might complain about getting appointments with their GP and waiting times, but it is only when you are incredibly sick do you really see just how amazing the NHS is. We are so lucky to have it. We can’t complain about the waiting times for operation dates because Guy has been that emergency more than once who pushed other people down the waiting list. It is only fair that he waits his turn now.
Thank you so so much to Fiona for sharing her honest story as a guest poster and sharing her thoughts and views in this piece. As I’ve stressed from the very beginning, this is a warm, empathic platform for people to share their stories, hopes, dreams, fears. Please do read Fiona’s story and leave a comment if you’d like to and share this series if you know anyone it could help. Together we are making changes.