My Gastroparesis Journey | Sophie

The Pacemaker was helping… with the sickness… Hello! [Intro Music] Well hello everyone and welcome back to my channel, or if you are new, hello welcome to my channel, my name is Sophie So for today’s video, I am doing a much requested video and that is a Gastroparesis update / journey I have been asked to do this video for literally the past like, 4 years and I have just never done it And if you don’t know what Gastroparesis is, I will leave the link to the video I did all about what Gastroparesis is in the description box below Just a little back story from all the way back tracking from the beginning of my journey I was someone who loved my food and it all kind of happened quite quickly The diagnosis side not so much but the onset of Gastroparesis happened quite quickly Now, I did the Camp America scheme in 2011, and I absolutely loved it, i was fine I ate A LOT! So when I came back from Camp America, all my problems started then I went backwards and forwards to Doctors I had doctors tell me, nope there’s nothing wrong Nope, it’s anorexia, bulimia are you sure she’s not making it up Ive had doctors actually turn round to my mum and say do you think she is lying During this year i had a lot of tests I had a lot of people tell us to go away basically I had second opinions I was thrown between doctors and appointments and not very much was really done that was useful I was then finally sent to a doctor who was a specialist in Gastroparesis and diagnosed me like *clicks fingers* that He did the gastric emptying studying which is what showed up my Gastroparesis and then from then he then put in my first Naso-jejunal tube or NJ Tube And that went in on the 11th Of July 2012 So this is already a year later That was as a trial to see my body would tolerate tube feeding which is did Although it wasn’t very comfortable but i also didn’t know what to expect They just kind of shoved it in about a week after my diagnosis And then a week after having the NJ Tube, they put in a PEGJ tube which is very similar to a NJ Tube it just goes through your stomach wall It still bypasses the tummy I didn’t get on too well with this and at the time we didn’t know why but I would just get a lot of skin granulation and pain I was just getting infection after infection and it was causing me more problems So that came out in the December However before they agreed to take that out and take me off feeding, they did put the Pacemaker in Now I was VERY lucky with my process for the pacemaker We didn’t have to argue too much in comparison to what i know some people do go through The 30th of October 2012, that is when i had the pacemaker put in I did do a vlog on my journey of getting the pacemaker put in so i will also leave that link in the description box below Over the next year, they didn’t really do all that much because it primarily for pacemaker adjustments There’s a lot of different changes that they do so within this time they don’t want to do too much otherwise they don’t know what it is that is helping They wanna do one thing at a time So it was almost a year later when things then started to take a bit of a turn again i guess On November 11th I was admitted again for fluids to A&E and that point they actually admitted me to do an ultra sound and an endoscopy again because things just weren’t improving They were still getting worse Although the sickness side of stuff was better with the pacemaker, the bloating and the eating and the pain wasn’t it wasn’t great A couple of weeks later or i think a week later, November 27th I have, I had another NJ tube fitted And I think this was partially their decision and partially mine For me, having a NJ Tube put in was kind of my break from having to attempt to eat stuff and then have the results after It was like a break for me mentally and for my body physically The 1st of March I was really unwell with a throat and lung infection, so basically the tube got blocked, it kept dislodging because i was trying to bring up everything that was inside of my system And my throat was really sore from where i had the throat infection so they did take

the tube out, but it was only for a few days because then on March 4th it was replaced Within this time, I did have a pain specialist at the Royal Free Hospital where my specialist was under And… I don’t like to bad mouth doctors and i don’t actually remember this doctors name, he really … wasn’t very nice Now whilst he was saying potentially what he thought was true, he just was not willing to help He clearly didn’t know anything about gastroparesis and this basically messed with my mind and just made me wanna give up Because, he basically told me there’s nothing we can do for you, you just have to live with it I know there’s not anything they can do for Gastroparesis, but there are things he could have at least tried Moving on to June of 2014, so between March and June I was … referred to a pain specialist who I am still under and i am eternally grateful for June of 2014 he tried me on Spinal Block Injections Now these are like local anaesthetic injections that he did into my back around like the middle of the back where your ribs area are which is where i get my pain And, he did a few sessions of those with slightly different dosages and… they made my stomach go numb for maybe an hour but they really didn’t do that much At this point i was also given a medication called Fentanyl which, i don’t know if you’ve heard of, but it is quite a strong medication And it was to try and help with the pain however, it just made me very sleepy so whilst, i guess technically you can see that as helping with the pain, i couldn’t get on with my life so … it wasn’t really achieving what we needed to do It was just making me sleepy and it was causing a lot of ulcers inside of my mouth And then fast forward to October where they decided to take the NJ tube out I was… at a stable weight because of the NJ Tube So they took that out at the beginning of October and they also turned off the pacemaker because they wanted to trial me on something called the Vagus Nerve Stimulator Which is essentially kind of like the pacemaker but this one was a little machine that you put on your neck and it… Like, you get told where the Vagus Nerve is because the Vagus nerve obviously goes through your stomach but runs up through your neck and into your brain and so, they trialled me on that And… it didn’t really work Like it helped for maybe like the first week and then like just all the effects just wore off For me I found the pacemaker was a lot better because this one didn’t really do anything for the sickness, so my sickness levels kind of went backwards So the pacemaker was then turned back on in the December Then as a nice early Christmas Present, my body decided to give me really nasty kidney infection Which saw me extremely unwell and I had to have 2 rounds of anti biotics to get rid of it At this time I was being trialled on a ton of different diets And I started a gluten free diet in the beginning of January so December we kind of let my body heal from the infection Get through Christmas because, doctors don’t work Christmas so you can’t be ill over Chrimstas I started the Gluten Free diet which initially helped massively I do still primarily have a GF diet However, in February my eating then went back down hill And any time you have a bad period of time with eating, it effects you mentally as well which then, effects even more physically and then it’s just a really vicious cycle In the October of 2015, so fast forward to like the end of the year pretty much I was sent to a new specialist who was a Gastroenterologist and really specialises in Gastroparesis And, he suspected that there was more going on than just the Gastroparesis and turns out he was right This is where, the first mentions of PoTS or orthostatic intolerance, mast cell activation, EDS, all of those kind of ones were initiated from him Whilst my pain specialist mentioned it as a passing comment or my mum saw it online This is the first time that a doctor was really like, i highly suspect that you have other conditions going on and they also need managing before you have

any chance of managing Gastroparesis basically And this is actually where my lightheadedness spells all really started to get bad Particularly in the November on wards It really became a problem Every time I was eating, not only was i getting pain, i was also going really lightheaded So, that meant my eating was getting even worse because, again like i said, it effects you mentally and i didn’t want to be eating and causing everyone around, all this like, hurt I didn’t want to put them through all of this added extra and i didn’t wanna be put through it either And it was December 15th that the EDS or Ehlers Danlos was diagnosed EDS and Gastroparesis are very closely linked which is why i thought i would include it Because that is where my Gastroparesis has stemmed from There’s nothing they can do for EDS again, it is just management and something that is very hard to get a handle on, especially over the winter When i was actually looking through all of these dates that my mum had written down, i noticed that a lot of my Gastroparesis flare ups are at this time of the year 25th December, Christmas morning, like 2am in the morning, Merry Christmas I was taken to ambula… taken to ambulance? I was taken to A&E by ambulance Because i was fainting left right and centre Give me a slice of smoked salmon, i’d eat it and i’d faint like 10 minutes later Give me a cup of water, i’d be on the floor fainting or like lightheaded and i’m just no there It got really really really bad So i was taken in by ambulance Christmas Morning Told to go home because they think that i need to see my specialist but obviously no specialist is around until after Christmas So basically told to just suck it up and get on with it The fainting, the lightheadedness all continued through christmas, through the whole of new year and i saw a PoTS specialist in London in the January time, and that is when i had Orthostatic Intolerance diagnosed Basically my body can’t control its blood pressure so it is either shooting up, shooting down They thought that when i was eating, all the blood was rushing to my stomach to try and deal with the digesting all of that because that was taking more blood to do because it wasn’t doing it right because of the Gastroparesis In the February to April time I started getting really itchy after eating They tried me on antihistamines, they thought it was a reaction to certain foods I had to try dairy free, back onto completely gluten free That then ended up me having like, ’fit like’ things After i ate i would go lightheaded and then i would suddenly start having what looked like a fit or seizure… seizure… seizuree…… seizure… why does that sound wrong in my head? My family around me saw it, my younger sister and brother saw it, my parents saw it And… it’s not very nice And so again… my eating got even worse In the April, middle to end, middle to end of April, i had another NJ Tube put in And this was the WORST experience of my life Now by this point, i’ve already had like 3,4 maybe 5 NJ tubes, this was the worst This doctor, i don’t remember his name, i probably blocked it out on purpose But this doctor, just didn’t understand Now, if you know what EDS or you have EDS, you will know that EDS and local anaesthetics don’t work very well I would have to be put under sedation or general or have like 10 times the amount of local anaesthetic This doctor didn’t wanna listen He told me he didn’t feel safe doing that even though it’s in my notes that it’s all ok Basically, it was take it or leave it as a local anaesthetic on a small dose So, i’m desperate obviously, we just have to go and do it He puts the local anaesthetic in, nothing happens as we knew it wouldn’t I’m still completely with it, having a camera shoved down your throat, when you have a tube and a camera down your throat and up your nose, now… no!! I felt like i couldn’t breathe and when you feel like you can’t breathe you get very worked up and you get very anxious And he told me to calm down and he told to stop being dramatic and that if i didn’t calm down, he wasn’t going to do the tube, that was that And, I was like well… i’m not leaving until you do it so… you better do it and i suggest that you give me another dose because, i’m fully there He agreed to like the tinies amount more which again didn’t do anything, i just had to suck it up but luckily the nurse was really nice and she like supported me through it However, 21st April, go to use…

well go to use the tube before, wouldn’t work from day 1, 21st they out that it’s blocked and it’s, blocked and kinked It’s kinked up and then when we have tried to use it, it’s obviously caused a blockage as it can’t get through They have to take it out At this point in my head, a) i was not ready to go through that procedure again incase i got him but b) they wanted to try me without it So the April all the way through to the October, the fainting, the lightheadedness, the fitting, all of it still continued and they couldn’t really figure out how to stop it I was in and out of consciousness the whole time I was being sent home from work, which anyone who knows me personally, will know i have work… like i don’t leave work My blood pressure was going over like 100, i was back and forth in ambulance to A&E, my mum was finding me unconscious on the floor, on my bed, my brother was walking in finding me unconscious, i am very grateful for my dog at this point because he would always, like alert my family if i was passing out or having a fit or anything like that This is where they started me on a medication called Midodrine Which… is well it it was for the orthostatic intolerance but in turn would potentially help my eating because my blood pressure would be controlled a bit more when i was eating so it wouldn’t all sink down to my stomach I started on the Midodrine…. and i…. it started really well It was doing quite well for a while And then they upped the dose… because it was wearing off a bit too fast and about 5 days after raising the dosage, I was really really really unwell For an entire week I was sent home from work, i didn’t remember being at work I was just in and out of consciousness, my blood sugars were too low Everything was just completely spiralling And at this point they actually took, all of my medication off and they stripped back my medication because my medication had just built up They think it was a combination of how many medications i was on and the Midodrine Was just it was too much for my, my wee little body to handle My pain specialist stripped everything back and just kept me on the ones that we all felt between us were the most important, and were the ones doing the most In January 2017, so the beginning of this year, we really focused on Ketamine Now, i had been on Ketamine for I think the year before this as well I was on very small dosages, we weren’t that focused on it because of everything else going on The pain element wasn’t, we couldn’t tell how the pain was because of the lightheadness and the fainting And that is kind of where we are at now We tried a lot of different pain medications, like opioids, we have tried anti epeleptics, pain patches, you name it, i have probably tried it It is something that is a new drug in terms of using it in this way To me it is the drug that has made the most difference for my pain Now we have played around with dosages, with how often i have it, all of that kind of thing and we still are Ketamine has helped my day time pain, pretty much go away More or less Girly time….. that’s … that just messes with everything My pain after eating… ehhhhh… is better I’m not rolling around on the floor anymore and i can stand on my feet with support, it has helped a lot It takes the edge off that when i breathe after eating, i don’t feel like i’m going to pass out through pain And, that is just currently where i am My eating at the moment, if i’m honest, is not great I kind of feel like life almost gets in the way of eating because if i want to do anything or go anywhere, i just won’t eat my food Like i won’t eat dinner I’ll just graze on rubbish food and whilst grazing is a good way to go forward with Gastroparesis, because it is meant to be small and often, probably not eating the right stuff small and often And in terms of like an update for my pacemaker, it helps the sickness Not so much the pain but we knew that going into it so if you are looking into the pacemaker… just be aware of that If you did like this video, and am happy that i did it, be sure to give it a thumbs up so that i know if you have any questions that i didn’t answer, then just let me know in the comments below or on any of my social media all of my links are in the description box below If you’re not already, please be sure to subscribe My goal is 500 by Christmas I don’t know if we can do it but I’m hoping we can so if you wanna help that would be amazing And i would really appreciate it And until next time Keep Watching Stay Strong And Stay Safe Bye Guys