A Blog about not Blogging…

Hello again, it has been a little over a year since I last blogged. The inability to blog both physically and mentally in essence is what living with chronic illness is like. You can have all the best intentions, goals, aspirations but the unpredictability of having multiple illnesses is always there, things can change very rapidly and get in the way. As well as this I found myself in a little bit of a rut, I felt weary, bored and exasperated by the recurrent failings of my body. I had little desire at the time to take to the computer and write about it all. I have gone full circle in my thinking. I can’t say I feel rejuvenated to blog again however I have brought my thinking back to why I initially started blogging. I find it cathartic, I genuinely feel a little lighter after publishing a post. It keeps my family and friends up to date without having to rehash the same update over and over therefore conversations in person aren’t dominated by health. Chronic illness of any type and nature can be extremely lonely, if my blog could help at least one person feel less alone in the world then it has served a purpose. To share my experiences could possibly help another person going through similar and also educate people without first hand experience of what it is truly like living with multiple chronic illnesses.

Looking back over the last year, both in my minds eye and my faithful diary (once filled with work appointments/social outings) has seen well over 90 medical appointments for all areas of my health. How does one even begin to unpick and unravel it all? For someone who thrives on order and organisation I’m going to go against the grain and instead of giving detailed accounts of those 90 plus appointments I’m going to pick out the most dominant and significant areas and go from there in the coming weeks….

I’ve written a lot in the past about my disastrous car crash of a digestive system (check out my previous posts) in fact my last blog post was predominately focused on it. Just when you think you’ve experienced pretty much everything gastro related the car crash becomes a multi car pile up on the motorway…

February of this year saw another major flare up of my bowel leading me to pass out. I’m familiar with these types of episodes now. However this episode ended in a different way. I began to bleed and pass bloody mucus which is a first for me. I let my gastroenterologist know via e-mail along with some very vivid pictures. Shortly after I got a call from the endoscopy department asking me to come in for a colonoscopy the following week. In between this time I also handed a sample in to my GPs practice who sent it off for testing. After a lot of messing and confusion of which lab my poop had frequented my results were finally retrieved and it came back showing a high fecal calprotectin level. This can indicate something inflammatory in nature going on within the bowel.

The day came around to begin my prep for the colonoscopy when I felt an immense pressure in my lower bowel and bum holey region!! This got worse and I noticed something there that really shouldn’t have been there….it looked like part of my boweI amongst other things!! I spent the day alternating between lying on my side or on all fours (quite the sight) trying to get hold of my gastro consultant to ask if it was still safe to proceed with the prep for the colonoscopy. After 5 hours and countless phone calls later he was tracked down and advised to attend my local A&E as this sounded like a prolapse. The colonoscopy would have to be rescheduled. After a visit to A&E which I felt was more a box ticking exercise and seeing a lovely GP it was confirmed I did in fact have a prolapse (Joy). Most likely due to the combination of EDS and my colonic failure. My colonoscopy was rescheduled for two months later!! In those two months the bleeding had stopped and I had gone back to my usual failing colon with an added prolapse for good measure. I cannot even describe what it is like when your colon doesn’t work and you have no medication to rely on as everything has failed.

Prep day came around again, although it’s really not pleasant to drink the prep and starve for the day to get clear I was actually looking forward to the colonoscopy to get some answers. As the day of prep went on I noticed I wasn’t clearing as well as I should be, the prep was causing me excruciating pain ( a first for me from prep) and although it was having effect I wasn’t “running clear”, those of you who’ve had this prep will know exactly what I mean. As morning came I still wasn’t clear and started to become anxious the procedure would be cancelled. When I arrived at the hospital I self administered an enema as a last ditch attempt to clear myself. I was upset and frustrated in equal measure, Id followed everything by the book. After an hour or so on the day ward I was walked down to the procedure room and was greeted by a Professor/Surgeon who would be doing my colonoscopy. He was a lovely chap. We chatted for a while, I was very disappointed that there were not clear notes as to why I was having the procedure. It came as no surprise to me though as over the years in the many hospitals and areas of my health I’ve had clinic letters with the wrong name on, tests results read incorrectly, wrong medication prescribed….many mistakes made!! I informed him of the bleeding and high fecal calprotectin result showing him a copy of the results I had obtained from my Gps. I proceeded to warn him of the prolapse jokingly saying “It’s like a magicians hat down there I’ve no Idea what’s going to come out next, I’m half expecting a rabbit”, he laughed. Initially before I was scoped he investigated by hand shall we say and confirmed the prolapse. I have had previous colonoscopies and never required any pain relief or sedation but I was just so sore, I politely asked for all the drugs which isn’t like me at all. I was given midazalam however it had little to no effect on me. It appears I need horse tranquillisers to get me sleepy!! He went on with the scope and spent a lot of time on the lower portion of my colon explaining I had an intussusception, essentially the lower portion of my bowel has collapsed in on itself they call it telescoping!! Marvellous I thought. As time went on I was beginning to get very uncomfortable there seemed to be much more air and water going into me compared to previous scopes. I had a birds eye cinematic view minus the popcorn and 3D glasses (thank god) of the screen. I could see it didn’t look clear. Just when I thought things couldn’t get any worse the professor hit the Great Wall of…..Butt truffles!! * I will add I have spent a very immature yet entertaining 30 minutes looking at slang words for poop, if you’re in need of a laugh give it a go* He only managed to get to the splenic flexure which is the upper left portion of the colon, even that wasn’t a great view and couldn’t get any further short of getting an industrial Vacuum cleaner in there. The colonoscopy had to be aborted. I was upset and deflated. It would have to be rescheduled yet again. The professor recommended a defacating proctogram and wrote a report for my gastro.

As I hadn’t heard anything for a few weeks I emailed my gastro to move things a long. A few weeks later I was sent for the proctogram. Basically I had to lie on a bed whilst a tube was placed up my bum and thick barium was passed through it. Why did every test involve some device up that region!! Safe to say all dignity went out the window or should I say down the toilet. Once the barium was In, I then had to truffle shuffle off the bed holding the barium in my bum/bowel not allowing any out!! I felt like I was in some warped game show/comedy sketch- whoever passes a drop loses!! Nervous/embarrassed laughter came over me- No Alison you’re in a precarious situation here, now really isn’t the time to start laughing!! I then sat on a make shift toilet with an x ray machine beside me taking pictures as I was instructed to push and pass it. The test gives a better view of the prolapse and if its causing any restrictions. Once completed the Clinicians noticed I’d passed blood amongst the barium, my paper knickers and I got up and retreated to the real toilet to get dressed and gather some dignity.

I saw my gastro in clinic a month or so after and we discussed my results. We talked about a surgery for my prolapse, we both felt that would fail due to the combination of my EDS and colonic failure. We needed to tackle the root cause which was my colonic failure. My gastro said there was one final medication used for a different condition but they had seen it having a good motility effect on the colon in some patients. This would be what they call an off licence medication. Due to my Pots, heart and autonomic dysfunction I would have to come in to hospital to trial it. If this drug was unsuccessful or my body didn’t behave on it we had the discussion that we had reached the end of the pharmaceutical line and would then need to proceed seeking an opinion from a colorectal surgeon with view of having an illeostomy (stoma). My gastro wanted me to take an extended 5 day prep orally in an attempt to get clear for another colonoscopy and made arrangements for the prep to be sent to my home along with another date for the procedure. As My bowel wasn’t working he gave me some surgical prep to take a short course over two weeks to try and get some output. I felt pleased we had a firm plan as 6 months had passed since the initial bleeding and we hadn’t moved forward in finding out the cause or in treating my colon failure. I went home and started taking the prep and soon ran into problems. It was not working at all, it just sat in me causing bloating, nausea and increased pain. After liasing with my gastro again we both came to the same agreement that the likelihood of doing another colonoscopy with prep was not viable, I just wouldn’t get clear. He offered a CT scan with iodine to take both orally and injected as an alternative. He booked me in as urgent. A few weeks later I went for the scan. We have since been waiting for the results. My mum has been chasing them and been told there is a two month delay on reading urgent scans so we sit and wait. Only two weeks ago I started in the same episode as February again with my bowel suddenly coming alive and bleeding. We really have gone full circle and still don’t have answers.

As well as enduring the symptoms the biggest frustration for me personally is the effect it’s having on other areas of my care. I’m missing many medical appointments that I need to attend. I’ve been unable to go to hydrotherapy for at least 6 months now which was my little sanctuary. I can’t even articulate the pain relief on the muscles and joints whilst in the water. We are now 8 months down the line with no solid answers and I can’t move onto the medication trial until the CT results are in. We have had to make many trips to A&E which is not a long term solution.

With having over 90 medical appointments this year you can imagine the magnitude that EDS and it’s comorbid conditions has on my body. Sadly you’re unable to turn one condition off whilst you deal with another. It genuinely feels like fighting the biggest bush fire with nothing but a dinky water pistol!!

Amidst old and new health issues which I will talk about in the coming weeks, I also await a hysteroscopy and removal of a lesion in my womb. I began 3 months ago having some unusual “lady symptoms” initially thinking nothing of it what so ever. These symptoms began to worsen but again I didn’t think too much about it explaining it away in a nonchalant fashion. Until a new symptom started I could not explain and had never experienced before. I was seeing my GP that week so casually mentioned what had been happening. I didn’t go earlier as if I went to see a doctor with every new symptom my

body churned out I’d never be away from the place they’d have to fit a rotating door. She booked me in for an ultrasound a few days later where a lesion on the lining of my womb was found suggestive of a polyp. I was then sent to see a gynaecologist on an urgent basis and met with him a week after the scan. What a lovely consultant he was, he told me he had a keen interest in EDS and had treated some patients with the condition. We discussed my symptoms that I feel are too personal to write about and he read the ultrasound report. He said I would need to come in and have what they call a hysteroscopy, a camera that goes into the womb so he could have a look around, he would then remove the lesion and send it off for testing to make sure nothing nasty is going on. He told me he was doing this as urgent. I explained I had a fused neck and was unsure if this would have any implication on intubation as I had not been under general anaesthetic since my neck surgery. He is arranging for me to meet with the anaesthetist first to discuss options and then I will be booked in for the surgery. I have since liased with my surgeon in America and being intubated shouldn’t be an issue as I am fused to C2 so still have some extension they just need to be careful. I’m hoping to hear soon and get some dates as I only saw him a week ago.

There are countless health updates to write about however I also want to explore other avenues and topics I have never written about before. I am pleased to finally get some words back on screen.

I hope this post finds you as well as can be today.

Ali xxx