Medical update July 2019 – a lot of deterioration but a lot of determination alongside!

Firstly I just want to say a huge thank you to everyone who has been here for me and my family the last four months, (17 weeks to be precise!) You know who you are and we appreciate you all so, so much. From those close to far away, in person and online. To those I’ve known for years and those I’ve just met or those I’m still yet to meet. Thank you to all of you for your support whether it’s messages, comments, photos or videos to cheer me up, to cards and post and gifts. I can’t explain how much of a difference it makes and continues to make every single day.

So, I wanted to do an update to everyone to explain in just one post what’s been happening and where I’m at medically. The reason I’ve not gone into lots of detail until now is because to be honest I’ve just been trying to come to terms with it all myself so the idea of having a million and one questions asked at me and having to explain it all over and over (especially as things were constantly changing) wasn’t something I really wanted at that moment. Just taking it in and coming to terms with it myself and as a family was enough to deal with.

But I now feel I’m at a point where I’m ready to explain and hopefully by doing one blog and one post which everyone can read, it will save me having to explain myself again and again. If you have any questions I’m happy to answer as I’m all about raising awareness of these cruel conditions we live with. But just always remember that what we see on social media is a ‘highlight reel/a small snapshot of someone’s life and it isn’t everything. There’s so much behind the scenes I don’t show and the same with most of us. So just always remember that, everyone is fighting battles, be kind, always.

 

So what’s been going on? In a nutshell, lots!

I’m not going to go into the background of everything as those who know me know and those who don’t feel free to go back on my previous blogs and stories to find out more. But in basic terms for those who don’t know me, I have EDS, POTS, MCAD and a lot of secondary conditions and complications from that which mean I’m a full time wheelchair user and include bladder failure, gastroparesis, bowel adhesions, chronic pain, suppressed immune system, steroid dependent, constant infections (sepsis survivor x9), ongoing respiratory issues, RAS and hypoxic seizures, and more (though that’s enough just on its own!) But that’s just a little insight into what I battle with daily for those who don’t know me at all. But as always say my illness is just one part of me (I mean a huge part let’s be honest, 24/7) but still one part as I am not just my illness and there is so much more to me than just that.

Unfortunately in the last year there has been a lot of deterioration in my health generally and it’s been really tough for us all. I’ve been in hospital since March 26th 2019 and except for one week out for our holiday to Cornwall in June (which was just incredible!) I’ve not left since.

I was admitted in March due to another bout of infection turning septic and me quickly going down my familiar path of heading to sepsis street which is a very dangerous one for me especially with my history of regular intensive care stays so we have to be on the ball and thankfully we were! We caught it in time and as always I’m so grateful to the wonderful teams including ICU and Outreach. They really are my lifesavers and know me inside out by now.

The next few weeks were focused on fighting the sepsis and the infection that started it all and after two weeks of strong IV antibiotics we were on the up and winning! Unfortunately the rest of my body was not too happy and a bit like in a game of dominos when one thing falls the rest come tumbling down too and thats exactly what happened. I’m used to it though as I spend a lot of time in and out of hospital and I just pushed on like I do.

Fast forward weeks later and my positivity was starting to fall. There was lots going on but the biggest problem was my stomach and bowels.

In two words – My gastroparesis. Firstly what is GP? For those who don’t know I’ll just explain briefly – It literally translates and means “Stomach paralysis”. It is a chronic condition (often linked with EDS) in which the stomach is unable to contract normally or empty itself of food so it cannot crush or push food into the small intestine. It causes major delayed gastric emptying and it is also unable to further digest or absorb nutrients like a normal healthy person. But like anything it is on a spectrum so no two people with it are the same. There is no cure but there is treatments you can try but again everyone is different and no two treatments will work the same.

I have struggled with GP for many years now, (causing me lots of symptoms and problems from nausea to vomiting to serious bloating, fullness, severe pain, gastritis, adhesions, malnutrition and much more) though not everyone will know this as I’ve not spoke about it lots (contrary to what some people think I don’t post everything on social media). But more recently it’s been getting worse, slowly but surely and I think part of me not talking about it is because I didn’t want to accept it was getting worse. But it was, I was deteriorating fast and I, we as a team needed to address it. This isn’t the first time we’ve had to intervene. It was back in 2015 I first had tube feeding started, on a tempoary basis and since then I’ve had periods of being tube fed and also at my worst TPN (total parental nutrition through my central line on a short term basis). But it was as needed and we always managed to get me back to a level I could manage without which was all I and everyone wanted and I was also/am still extremely stubborn so was very determined not to have anything permanent unless absolutely necessary.

Unfortunately fast forward to April 2019 and we had reached a point of those hard discussions that had to be had (the ones I have tried to avoid but unfortunately couldn’t anymore).

This is why it has taken me four months to write this blog because it’s taken me (and my family) a long time to come to terms with what’s happened and accept the deterioration my body has succumb to and consequently the more invasive but necessary interventions needed to keep me alive and functioning.

Before anyone asks this is not something that was decided lightly, it’s something as I said earlier I have been fighting for years and we have tried all other options before ending up at this one (trust me I’m a stubborn so and so, anyone who knows me well knows that!) I’ve cried so many tears in this admission feeling like I’ve failed, like maybe I didn’t try hard enough (even though I know I did) and accepting it has been really, really hard. I’ve had so many dark and down days and it has been really, really tough.

Thankfully I am under a really good team (you still get the idiot, uneducated and just darn right rude doctors amongst them all) but ultimately it’s my consultant who makes the decisions and she is amazing. Alongside her I have an incredible specialist nurse and they know EDS, GP, CIPO and all the ins and outs of the complications I and many get so well which makes a huge difference to the care received. They are also in close contact with the specialists at St Marks and Royal London and there’s been lots of meetings and MDT’s on and about my case so throughout it all I’ve been in very good (and top notch specialist!) hands.

I could sit here and write word for word everything that has happened over the past four months of care and treatment but we would be here forever (and this is already turning into a mini essay of its own, thank you for staying reading if you still are!) So I’ll break it down into the important bits! In simple terms we did everything in stages (this included all the nasal tubes, NJ, PEG, PEGJ etc) and it was all agreed with by the specialists at St Marks IF (intestinal failure unit) too. I have to feed into the small bowel as feeding into the stomach doesn’t work due to the severity of my GP. So I feed into the jejunum which can be assessed in a number of different ways by different routes and tubes. (I’ll do a separate blog on different types of tubes at some point, if people would like that?)

Fast forward again and I had a lot of problems with my tubes, unfortunately I suffered a number of complications and again this is all individual so everyone is different and not everyone will. But unfortunately for me it was not working and with all the teams input the decision was made that I needed a direct surgical tube.

Whilst waiting for this particular surgery I was getting weaker and weaker though, (had another fight of sepsis and an important bladder operation in between all this). So the next hard decision was made and that was to put me back on emergency TPN. I broke down when I heard this as TPN is always a last resort/as short term as possible as it comes with so many risks, especially with me and my immune system/infection risk. But we had no choice and my lovely team supported me as much as they could and I bravely said yes, trying to hold on to the fact it would just be until the surgery and I couldn’t go into another big operation as weak as I was as well as all the malnutrition/nutritional problems and the stress it was putting on the rest of my already fragile body.

More fast forward and I was finally strong enough for surgery (yet another one, I’d been back and forth to theatre so many times the past four months!)

It was hoped it would be able to be done keyhole but we knew it might turn open due to my previous adhesions and complications and true to that it did. But it was done very carefully and I was looked after by not just one but two of the specialist surgeons and my gastro consultant. They also found that whilst they were operating my anatomy was slightly strange/different to most. My stomach was very floppy and over stretched going all the way across, down my abdomen and into my bowel. This is, well one a sign of my EDS as everything is stretchy because of our connective tissue but my surgeons went on to explain that they don’t actually often see it with EDS but more so with severe GP (gastroparesis) and this was a classic sign (along with all the others). It has also been really hard realising the reality and seriousness of my situation and although I try put on a brave face and smile underneath it’s been extremely hard. Signing my consent forms for surgeries and seeing ‘gastroparesis and intestinal failure’ written and read out loud right in front of me, although we all know and are aware, was a real tough thing to hear.

Looking down at my abdomen and seeing three tubes (my SPC, (I’ve had for years) my surgical jej (which I feed into, all my meds go down and nutrients) and my venting peg (which drains my stomach and helps enormously with my symptoms) as well as my port in my chest I’ve had for a while now) was hard at first but as the team and my amazing specialist nurse keep reminding me, I wouldn’t be alive if they hadn’t intervened and these tubes are what is going to give me my quality of life back, let me function and let me get home.

Willow waiting for me to come back from surgery.. then below when we were reunited..

I know there may be a million and one questions you still want to ask me and like I said above I don’t mind, I’d much rather you ask me than not or assume as everyone is so different and each story is individual. But do bear with me as I’m still recovering from surgery and as I’ve said throughout this blog it’s been really hard for all of us as a family adjusting to the deterioration and a new way of life so we’re also just finding our way too.

I will do more blogs to explain things in more detail or answer questions, if you’d like me to? Or if there’s anything specific you don’t understand or would like me to write about just post a comment on here or message me.

Until then I hope this gives a little insight into what’s been going on in my world the last 18 weeks. Its been and still is an emotional rollercoaster and one we are all still adjusting to. Food is around every single thing you do, day in and day out and it’s really hard having to explain yourself to people again and again but I’ve also learnt (with the support of my amazing friends) that I’ve got nothing to be ashamed of. These tubes saved my life and it was a last resort and a heartbreaking one at that but I don’t need to justify it or anything, I know what’s wrong and so do my team and all those who truly care about me will adapt and understand and I hope this blog helps to explain a little of my story too.

Now I can look forward to getting back to living life, to having fun, just with a little rucksack on my back 24/7 and some extra medical supplies. But we already have that with my SPC and central line so it’s not much difference, just more to add on! Yes I can’t eat like you but there’s still ways I can join in so don’t leave me out, don’t be scared to ask questions, just treat me exactly as you did before. I’m still me! I’m still the bubbly, happy go lucky, quirky, talking fast, smiling and passionate Ruth you all know and love! That’s something that will never change.

 

But most importantly we’re not alone, I have a great team, I’m still smiling (most days!) and there is always hope and right now we just hope for home and a quality of life once again. I’m still on TPN at the moment, fighting back from surgery and a possible post op infection, gradually trying to get my small bowel to waken and pray it’s not too far gone and lots of other bits and bobs but I must be home by the 12th August as that’s my 25th birthday and I will not be here! I spent my 24th in here last year, not this time, I will get there! I will! I couldn’t have got through the last 18 weeks without some determination and stubbornness and that’s what will keep pulling me through, alongside my incredible family, friends and all of you guys too who have kindly taken the time out of your day to read this blog.

Thank you so much for taking the time to read this if you have, I really do appreciate it, my mum and dad too. My whole family and myself are so, so appreciative of all the support you give to me and us online, in person and by post. On days I can’t keep going you remind me I can, you give me hope and you are ALL AMAZING. Never forget that.

So much love, from myself, mum, dad and of course little Willow