I want to start this post off by apologising to you all. my health updates are my most read blogposts and I know so many of you take time out your day to give them a read and keep updated with what’s going on in my life currently. It’s been a good 6 months since I last uploaded a health update and I am sorry for that.
Quite honestly, apart from the fact time has just been running away from me lately, I haven’t actually had that many appointments to update you on. The last 3/4 months have been pretty quite on the appointment front. As you can imagine, I’ve been taking full advantage of this as I know as the year progresses, the appointments will begin to roll in again.
This being said, the appointments I have been to have been pretty big ones so I’ve still got some catching up to do for you guys! Also, I wanted to include a tube update and a migraine update as I know these are two of the main things people tend to ask me about. This is going to be a big one so before I ramble on for any longer, let’s get into this…
Let’s throw it back to last year!
Tooth Fitting / Last Orthodontist Appointment ~ 18th & 19th September 2019:
I think it’s fair to say I’ve been through one hell of a journey with my teeth. If you read one of my health updates from last year, you’ll know that I had to have a minor operation on my bottom left gum to remove the chain which had been placed around my canine tooth to try and pull it up. Obviously this meant that I was still left with a gap where my canine should be – I was given two options, one was to leave the gap as it is or have a false tooth placed (as we know from years of trying that my canine tooth is never going to grow).
So I decided to go with having a false tooth placed. I had to wait a few weeks after the op so my gumcould recover but time for having the tooth fitted came round incredibly quick! I had this fitted at my dentist and honestly, the finish result is just perfect. I’ve finally got the smile I’ve always wanted! Having this tooth fitted meant that the next day was my final orthodontist appointment to have new retainers made. It was a bitter sweet goodbye as I’ve gone through a lot with the team, they’ve done everything in their power to make my smile perfect and I’ve got a lot to thank them for.
Boob Clinic / Ultrasound
I’ve never really spoken about my boobs on my updates before as I’ve always been quite a prude when it comes to being open about certain body parts but I know this may help some people so I wanted to speak about this.
For around 9 months now I’ve been having bad pains in my boobs, it’s something I use to pass off as growing pains but after a couple of months, the pain was starting to increase and I was noticing it more and more (especially in my left boob). I also noticed that sometimes I’d wake up and my boobs would be rock solid but painfully hard, I was getting discharge from my nipples and whenever my nipples became hard, the shooting pains I’d get would make me feel sick. So as you can imagine, I finally plucked the courage to go to the doctors.
The doctor quickly referred me to the boob clinic and within a week I got an appointment, it all happened pretty quickly. I met with the doctor who did an examination, thankfully he couldn’t feel any lumps but he did say my boobs felt solid so he sent me for an ultrasound. The ultrasound happened pretty quickly also, within a few days I’d say. The ultrasound came back clear thankfully which left me with the question why was this happening.
The doctor explained that it could be my thyroid which was causing my boobs to do this. I’ve got an under-active thyroid so there’s a ton of symptoms this can cause which I had no idea about. OR it could be hormonal as I’ve got multiple hormonal illnesses it could be one of them causing it. He advised that I try some lavender oil which you can buy in Holland & Barrett. I wanted to share my little story as I know many girls suffer with ‘boob issues’ and are to scared to go to the doctors but honestly, it put my mind at rest. It could be something of nothing but it’s worth getting your worries checked out by a professional!
Urology ~ 28th October 2019:
I don’t know if I’ve ever mentioned this on my health updates before but I have to self catheterise every time I go for a wee because my bowel has wrapped itself around my bladder and is squeezing it, meaning I can’t urinate without help.
Anyway, i ended up getting lost in the system somehow and I hadn’t seen a urologist in nearly 3 years, this is someone I should be seeing every 3 months due to the nature of my problem. So thankfully my GP referred me to a new urologist and the appointment came through pretty quickly. Last time I saw a urologist, he told me that in 6 months time, I should be having a catheter surgically placed (superpubic catheter) as you shouldn’t self catheterise for more than a year as it can cause damage to the bladder. As I say I got lost and still 3 years later I’m self catheterising. When I went to my new urologist, we spoke through this and he was more pushing me towards self catheterising as placing a surgical catheter when you’ve already got such a big bowel problem can be dangerous.. this was fine by me. One thing I did mention was that I’m not emptying my bladder completely and it’s taking up to 45 minutes sometimes to even get a urine output. So he decided to send me back to the catheter nurses to try some new catheters that are different sizes to see if this was to help.
Feeding Tube Update:
As you’ll know if your a long term reader of mine, on the 30th April 2019 I had my RIG feeding tube placed. Let’s just say, it’s been one hell of a journey since then!
Not long after having the feeding tube placed, I caught a flesh eating infection which was eating away at the inside and outside of my tube site. This was an incredibly hard infection to clear – after trying 4 different oral antibiotics, 2 steroid based antibiotic creams, antibiotic eye drops and two different washes we soon came to realise that the infection was antibiotic resistant and wasn’t going to clear that easily. The site of my tube was warm to touch, red raw, puss constantly leaking and was very painful. A few weeks into having the infection, a granuloma began to grow on both the inside and outside of my tube. A granuloma is a mass of granulation tissue which typically forms in response to an infection. It started of small but as time passed, the granuloma continued to grow bigger and bigger. By this time, my site was beginning to bleed, I’d wake up and be covered in blood and puss and the pain was unbelievable. It was more painful than the day after having the operation. The only way I can describe it, is what I’d imagine a cigarette being put out on your skin would feel like… a sharp burning pain which happened every time I moved. Like the infection, the granuloma wouldn’t clear up regardless of the amount of treatments we tried. We even tried herbal remedies but it wasn’t budging for anyone. So my tube nurse decided to refer me to the Tissue Clinic, this process was LONG let me tell you. Not only did I get lost in the system, when we rang my GP surgery, no one had even heard of a Tissue Clinic. After a couple of weeks of constant back and forth, someone finally got through to the tissue team up the Brighton General and within a couple of days the tissue nurse came to my house.
Granuloma’s are known for being a pain in the butt for getting rid of. So the tissue nurse looked it over and quickly came up with a brand new treatment plan which was much more ‘intense’ than the other treatments I’d tried. It is a three week long plan which entails two different steroid creams, a wash and keeping the site of my tube covered at all times by gores. Thankfully, this treatment worked and got rid of both the granuloma and infection – it felt like a miracle. I know that may sound dramatic but I’d be trying every treatment possible for 7 months and nothing worked and I was in so much pain at times. During this time, I was constantly back and forth A&E but no one knew what to do!
On the 30th of December, I woke up and my tube was laying next to me. Now if you have a tube in your stomach, you’ll know you only have a hour until the hole begins to close. Thankfully, my dietitian had ordered spikes, which you push into the tube site to keep it open whilst you wait to have it replaced. So off we went to A&E. 8 hours, yes you heard right 8 hours I waited for a surgeon to come down from the ward to literally put the tube back in which takes 5 minutes. Anyway, it got replaced and thankfully it hasn’t happened since.
So, I’ve gone into 2020 with a perfect looking tube site, no pain and a tube that works well. Let’s hope the rest of the year follows!
If you read my London Hospital Admission blogpost (https://ellegracedeveson.com/2019/08/21/london-hospital-admission-update-august-2019/) you’ll know I was started on a steroid based treatment which is called Flunarizine. I started on a 5mg dose for three months then it was upped to 10mg for another three months – unfortunately this treatment didn’t work for me. We had such high hopes but unfortunately it wasn’t meant to be. So it was back to the drawing board.
On the 19th February 2020, I travelled up to London to see my consultant and talk through new treatment options. I’ve been on every ‘well known’ migraine treatment and alternative treatments but nothing has worked for me. So the next option for me is to try Botox. With Botox, you have 30-40 injections all over your head and neck to hopefully dull or prevent the migraine. Because my migraine is left sided, I’ll have more injections there. Unfortunately, the waiting list for Botox is long, so it may not be done for a couple of months yet. You receive the Botox on the day and then 12 weeks later you get the second lot. It’s after two full doses of Botox you can make the decision wether it’s working for you or not. There’s only a 50/50 chance that this will actually work for me. The odds aren’t brilliant, most of my consultants patients have come back saying it hasn’t worked for them but it’s something I’m willing to trial to try and get rid of these migraines. I’ll be going back to my consultant in October to update him and if the Botox hasn’t worked, then we’ll be moving onto the next option. *fingers crossed it works*.
At the end of December / beginning of January, I noticed that the creases in my neck and armpits had begun to change colour. It looked as though I hadn’t washed myself properly and had tide marks, but obviously after scrubbing myself raw, I soon came to realise it wasn’t that. At first I just kept an eye on it, I wasn’t sure if it was maybe dry skin but as time went on, the colour began to get darker and it was spreading all around my neck, both my armpits and to the folds in my arms. So I decided to go to the GP as it makes me incredibly insecure (nothing worse than the thought of people thinking your dirty, as that’s what it looks like), my GP sent me for a couple of blood tests, one to test for Addisons Disease and one to check my thyroid levels. My test for addisons came back normal and my thyroid level came back fine with the medication dose I’m on so that ruled them out straight away. I ended up going back to my GP as like I say, everyday it gets a little darker. My GP was completely stumped as to what this could be so he’s referred me to Dermatology in hopes they’ll know more.
It should only take a few weeks for the referral to go through so I’m hoping it’s soon and I’m hoping they’ll know what’s going on as this literally came out the blue!
If you was wondering why i uploaded one blogpost and then took a two week break, it’s because I couldn’t move as my back and neck had gone into spasm. On the 3rd of March (Tuesday), I woke up absolutely fine, transferred from sofa, to chair, to sofa and after 10 or so minutes of sitting on the sofa, I couldn’t move. I was in absolute agony with my back, right between my shoulder blades – at first we thought it could be trapped wind but a few days passed and it was still hurting. By the Sunday of that week, the pain had travelled up to my neck. We wasn’t 100% sure wether it was a spasm, pulled muscle or if it was my Arnold Chairi playing up so we ended up calling 111 and an ambulance was sent to me. The ambulance people looked me over and said that because of being immuno-suppressed A&E wouldn’t be a good option for me with everything going on so they wrote a note for my GP to come and see me at home the next day. The GP arrived and looked me over, said it was defiantly a spasm as she could feel it. Whilst looking me over, she listened to my heart and pulse, and told me that she could hear a heart murmur – something I’d never been told before. That being said, she’s writing to my cardiologist who I hopefully see in a couple of weeks time that she’s found a murmur and it needs to be looked into. Typical me, get the GP out for one thing and get told another problem! Thankfully by Monday (16th March) my neck had returned to normal and I was finally able to move it again. It’s amazing the little things we take for granted!
You’ll be pleased to know if you made it this far that, that’s my health update finished with for today!
Thank you so much for always wanting to keep up to date with everything that’s going on, I really do appreciate you taking the time out your day to read these updates. In the process of you reading, your helping me raise awareness & spread the word about my illnesses which are rare and unheard of.
I’ll be sure to keep updating you throughout this year! I certainly won’t be leaving it as long this time.
Sending you all tons of love & hugs as always,