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My name is Imali and I live near Portsmouth, UK. The symptoms of my chronic illness started when I was just two years old, and never improved. This blog is about support, sharing useful information that I’ve learnt along the way and real-life stories. I’m a big believer that each person’s story can help someone else who might be in their own process of working out what’s happening to their body, so here’s mine.
If you’re looking to learn a bit more about me outside of just the medical stuff, I’d recommend visiting my ‘about page’ where I give you a bit more of an overview of my job, things I enjoy, etc.
However, if you’re looking to hear the whole story about my health, buckle down, grab a snack – it’s a bit of a long one!
I was a very healthy baby, but by the time I reached two years old and had my baby vaccinations, something changed. There’s a lot of speculation over what cause this changed, especially since the internet didn’t much exist at the time, but safe to say I wasn’t well from this point. In hours and days after my vaccinations I became distressed, ran a fever, exhibited flu-like symptoms and was noticeably more fatigued.
These symptoms never fully went away, with me seeming to have a much weaker immune system after this point and constantly suffering with chest and urinary tract infections. I could not seem to shift the infections, leading to being on several rounds of antibiotics each time. I would get multiple of each per year and spent more time out of nursery than in it. Eventually, when I was five years old I was diagnosed officially with M.E (also known as Chronic Fatigue Syndrome – these days, very similar to long Covid). According to the Tymes Trust at the time, I was the youngest person ever diagnosed with this condition.
Around the age of five, I started to develop other issues to accompany the ones I already had, including poor balance, pains in my joints, burning feelings in my skin and issues with my digestive system.
These only worsened over the next few years, as the doctors frantically hunted to try to put a name to what was happening. As a young child, I spent a lot of time in the hospital having tests for one thing or another and hitting many, many dead ends. Nothing seemed to be obviously wrong, and yet it was very clear that I wasn’t a healthy child and I couldn’t keep up with my peers.
Because of my terrible immune system, permanent fatigue, stomach issues which were leaving me glued to the bathroom for fear of accidents and ongoing issues with unsteadiness, I ended up not being able to attend school. My family tried to get me a school placement multiple times, but in the year 2006, schools were not inclusive and the idea of ‘reasonable adjustments’ was quite mind-blowing. Hence, I was homeschooled.
Around this time, I developed a lot of anxiety and my family noticed I would struggle to keep eye contact and stim. I was academically ahead of my years, with a multitude of special interests. I had an autism assessment and was identified as Autistic.
I was a good candidate for homeschool, in the fact that I’ve always enjoyed being academic, over practical activities which I didn’t have the energy for, but it was really hard to see other children my age managing to do so much more than I could ever manage. Between the ages of six and seven, I had several scary bouts of symptoms that nobody could explain, including chronic constipation, in which my stomach appeared to become paralysed and I was left unable to eat for weeks at a time. There was another occasion where I couldn’t breathe in the middle of the night due to mucus being caught on my lungs and I stopped breathing – thankfully, my parents managed to clear the blockage as the ambulance arrived and I was cared for at the hospital.
At the age of seven years old, I was diagnosed with ‘lazy bowels’ – a frankly, quite useless description of my digestive system which seemed to randomly have bouts of simply not functioning, in which I would lose huge amounts of weight and become extremely unwell. I carried this diagnosis with me until I was a young adult. The only ‘treatment’ that the hospital could suggest at the time was to keep me on a very strong duo of laxatives and tell me that my issues were ‘in my head’.
My joint pains, and coordination issues continued, severely enough that once I outgrew my pushchair, the hospital decided that I needed a wheelchair. Safe to say, it was bubblegum pink – in true ‘Mali’ style. Around the age of eight I was provided with a variety of support splints to wear and orthotics. The doctors decided I had juvenile arthritis and that, of course, they couldn’t do anything for this. It felt like we weren’t really getting anywhere, even as a child.
All the way along, my consultants at the hospital would tell me ‘you’re going to outgrow these issues’, ‘Just wait until you’re 10, and you’ll get better’.
10 came, 11, 12, 13 – my symptoms weren’t going anywhere. If anything, they got worse as I hit puberty and now I had the joy of also contending with my period.
The hormonal changes at this age seemed to worsen my joint issues, with my pain than ever and my immune system was in an absolute state, with me catching a virus at least twice a month. I barely had time to recover from one thing before I started the next.
At fourteen, I was referred to rheumatology by my childhood consultant and I had the first appointment where anything made sense. Within 5 minutes of the appointment I was diagnosed with fibromyalgia – explaining the constant pain I had in my skin, sore patches and strange sensations I could feel practically everywhere, all of the time.
I was also diagnosed with Hypermobile Ehlers Danlos Syndrome, which explained why my legs would randomly give way and why I had so much muscle weakness. Looking back, I’d always known to ‘crack’ my joints when they hurt and I had frequently relocated bones that didn’t feel ‘right’. Turns out these were dislocations and subluxes of joints. It’s also likely that the issues with my breathing and skin healing I’d had as a small child were linked with my hEDS diagnosis.
Off the back of this appointment and following concerns from my gastroenterologist, I was sent to physiotherapy and pelvic floor therapy, where I was indeed found to have very poor muscle strength which we worked on over a period of months. Although the exercises would help, they would cause me massive relapses and in the end it was decided that it was best not to continue these.
Around this age, I again entered a massive flare of my digestive problems, totally out of the blue. My whole digestive system seemed to freeze, with me being unable to eat more than a spoonful of yoghurt for weeks on end. I lost a lot of weight, and things got very concerning. I ended up being put on more laxatives than I care to list, and a liquid diet for several months to get my system working again. Again, this was put down to ‘lazy bowels’ and nothing further was done.
During this time, I wasn’t able to leave the house much, and ended up doing a lot of online art projects and joining groups. I started my first blog around that time too. It took me the next couple of years to recover from how ill I’d been at this time, and I would still continue to have constant knockbacks from viruses. When I was 15, I caught chickenpox – almost as soon as my spots came out, I then also developed shingles. This was awful and knocked me sideways – my skin is covered in scars from the spots that never healed (Thanks hEDS skin!).
Somehow, I managed to continue with homeschool enough to get through two of my GCSE’s and get accepted into college. By this point, it was 2017 and education facilities were expected to make more effort to be inclusive. I still had a fight to get a place, but the college I ended up going to was super supportive and helped me to thrive.
I became a much more active wheelchair user once I started college, as I was now out of the house more than ever. At first, I was determined to try and not use a wheelchair but quickly discovered that wasn’t going to work when on day 2 I collapsed while trying to walk down some stairs. I only attended college part-time and even that pushed me to the limit, but I loved finally being able do something a little more independently and thrived. I also caught every germ going through my time there and had many, many sick days. I like to think that maybe this helped my immune system though? Who knows!
Skipping forward a few years, I found a way to ‘manage’. I learnt that if I used my wheelchair, I wouldn’t dislocate so much in my lower half and I wouldn’t feel so much pain in my legs. Sitting for long periods helped me to avoid using the toilet, although I still frequently had bouts where I had to dash, or I’d get terrible UTI’s. Using my wheelchair also prevented me falling, stopping related injuries like banging my head which previously I would do a lot.
I was feeling quite rebellious by the time I was at college, sick of being the ‘sick girl’ and so I did my best to completely ignore my symptoms. Of course, that didn’t really work. Hand-writing my assignments caused crippling pain and my fatigue made it difficult to follow a lesson. However, my college were supportive and somehow I got through.
My tutor also recognised that I had severe processing issues when it came to numbers and maths and I was diagnosed as dyscalculic.
During my last year of college I started doing occasional work on the side during holidays for small businesses locally and decided I wanted to use my new qualification to become a graphic designer. I managed to suitably impress a local firm, enough that I landed a part-time job when I was nineteen.
Over the next couple of years I continued to have the ‘usual’ issues I experienced while trying to balance working, occasionally being required to go to an office and then of course, Covid-19.
So far, I’ve had Covid-19 four times, and it’s entirely wiped me out each time. I quickly realised that being immuno-surpressed I’d need to work from home fully, which I have done since the start of the pandemic.
In December of 2020, I got married to my absolutely amazing Husband, right bank smack in the middle of all the Covid lockdowns. It’s without a doubt, the best decision I’ve ever made.
At this point, I was still trying to pretend that my health wasn’t that bad. I think I had become so disillusioned with the fact that everything I seemed to suffer with had ‘no cure, or anything we can do’ that I just thought I had to put up with what I had.
In 2021, out of the blue, the amount of UTI’s I suffered with became crazy – I had about 18 bouts during the course of the year. I also suffered with my skin, finding myself spontaneously splitting and bleeding all over, randomly with no warning. I still struggle with this today.
Fast forward to 2022, my UTI’s finally calmed down, but then I started to notice blood and mucus when I had a bowel movement. At first, I didn’t think much of it, putting it down to these skin splits which I figured must also being happening internally. Slowly, over the next couple of months the bleeding got worse and I started to get cramping pains every few days.
One day, the bleeding was particularly bad and I was stuck in the bathroom for a lot longer than usual. I decided to go to A&E, because something clearly wasn’t right. There I saw a Doctor who wasn’t overly interested in looking into what was happening. I spent about 13 hours in the hospital getting conflicting information about what was happening. One nurse said I was being admitted, while the Doctor said he didn’t believe there was anything wrong with me. I had a blood test, which didn’t flag anything unusual and was sent home being told that I had haemorrhoids. That same Doctor said ‘See how it goes, if you’re still having issues in a year you’d better come back’.
At this point, I felt completely hopeless and like I had wasted everyone’s time.
For around another year or so, I put up with my digestive symptoms. I tried to discuss them with my GP on a few occasions, but nobody would listen and so I just stayed quiet.
In spring 2023, my symptoms worsened again, with me now experiencing incontinence, along with cramping, bleeding and sickness. On top of this, I suddenly developed what I was told was a broken rib – I have a theory that my colon was swollen and causing pain. Enough was enough, I had just moved house, so I went and saw my new GP.
I explained my history and she begrudgingly agreed to refer me for an emergency scan. At first, I was being investigated for Cancer, but then they went on to look for other things. I had a CT Endoscopy which to everyones surprise and horror showed extremely severe ulcerative colitis.
According to the gastroenterologists I’ve spoken to, it’s very rare to be diagnosed with UC by just having a scan, but mine was so severe that there was no missing it.
It turns out that I could’ve had this for many years and it may explain the flares I’d had growing up of my digestive issues.
What came after my diagnosis was several rounds of steroids, trying to get a grip of the inflammation in my digestive system and calm it. These did help for a time, but unfortunately, they’re only a short-term solution and each time I would come off them, things would get worse.
I was found to be extremely anaemic from all the blood loss, so I was given iron infusions, which helped. I lost a lot of weight from the lack of absorption and my hair fell out.
In September 2023 I had a pillcam endoscopy which showed inconclusive results, but the preparation for it made me extremely unwell and I began to go downhill even more afterwards. I couldn’t leave the house without having an accident and I was consistently anxious if I wasn’t in the bathroom as I would have to go without any warning.
In November of 2023 I was started on biologic infusions to try and calm the flare I was having of my colitis, but these didn’t work. I had six doses of Infliximab in total, but they only made me sicker. I ended up on these and steroids at the same time.
I was desperate for relief, consulting a private Doctor in London who confirmed that I was receiving the right care via the NHS, they just didn’t often see cases as ‘bad as mine’. Due to the issues I had with skin tearing, I was paranoid about having a colonoscopy and wouldn’t let them do one, as nobody seemed to have a clue about hEDS. When I mentioned it, I was told ‘we only treat digestive issues’ which didn’t inspire confidence.
Soon after this, I moved to Southampton General Hospital for all my care – I have to say it was the best decision I could’ve made. The IBD team there are SO much more equipped and because they’re researching the disease they have a lot more time to look into things.
I had a telephone appointment with my new consultant in January 2024 who took the time to go through things with me, and explained that if my biologics didn’t start to show that they were working in the next month, we’d have to consider our options…
Turns out we didn’t have to wait. By the end of January I came down with what I assumed was Norovirius. Between my usual poor immune system, being immuno-surpressed from the biologics and how unwell I felt in general I wasn’t surprised. When it lasted more than a week, I did start to wonder what was going on. I rang my IBD team and they suggested that it might take me a bit longer than average to throw off and to hang on until day 10.
I did, and my symptoms got worse and worse. I couldn’t eat or drink, I was passing out and I felt awful. On 22nd February 2024 I went to A&E at Southampton Hospital where I was quickly triaged and it was noticed that my heart rate was 170bpm. I was immediately taken to resus, where I was told I was about to have a heart attack unless I took some medication to correct the irregular rhythm – Not what I was expecting!
I ended up having to have three different procedures, none of which works to reset the rhythm. One of which was an awful medication which cause the top and bottom parts of your heart to sync back up – not until it had however made your heart stop. I had to have three lots and it truly felt awful. In the end, however, the wonderful team found a medication that worked and my heart was controlled.
I was then admitted to the gastroenterology team’s care, in which I remained an inpatient for the next month.
During this time, I agreed to have two sigmoidoscopy’s as I was so poorly – neither of which caused any issues with tearing, thanks to how amazing my team were – and both which showed the terrible state to which my colon was in. Several emergency attempts were made to fix the flare, including a brand-new medication called Upadacitinib which was trialled on me.
My conditioned worsened however, and I ended up unable to absorb anything at all, including the tablets. IV steroids were trialled but caused my skin quality to worsen, so they had to be stopped. I lost 10% of my total body weight and my options decreased.
On the 13th of March, I started to develop an intermittent fever with shivering, which was treated with antibiotics. By the 15th March 2024, I had sepsis and my bowel perforated, resulting in excruciating pain. I was rushed into emergency surgery on this day in the evening, coming around to having had my colon removed and a stoma.
Here is where ‘Merlin’ the stoma enters the story, along with ‘Bruno’ my mucus fistula. My colon was so damaged when the surgeon got to it, it had very little blood flow and was ulcerated throughout. As a result, it couldn’t be entirely removed. I still have 9.8 inches connected to my rectum, which comes out of my lower fistula. This is to allow it to continue omitting what it needs to, as it was in such a state it wasn’t going to be able to be left internally like usually would happen.
Because the surgery was an emergency, I had to have a midline incision – not ideal as an hEDS sufferer, as my muscle strength is now worse than before. I woke up with more tubes and wires than I care to remember, including a central line in my neck.
Later, I was given a PICC line (a permanent cannula) which was a blessing, as my skin did not cope well with having so many cannulas placed while I was in hospital. I had more than 35 placed in 28 days.
I finally left the hospital after two weeks and I’m pleased to say my recovery so far has been very good. I am definitely suffering with my core strength, but that’s to be expected. Since having my colon out, I’ve not had any desperation for the bathroom and feel like I’ve got my life back.
Although my other conditions haven’t gone anywhere, helping my stomach problems has taken a big weight of my shoulders. Now I live with my stoma and I’m so pleased to have it, as its a sign of feeling better!
Now, I’m working on building my strength back up. I’m still having a few strange symptoms, such as leg pain when I move my next, balance problems and I still trip over easily, but these will be reviewed next year at a neurology appointment. I also have some pretty severe food allergies that cause me some grief, but I have an appointment in November to consider these and if there’s anything I can do.
I aim to keep this page as up-to-date as I can, but a lot tends to happen in my medical life – more to come shortly, when I have the energy to write!