I swear I say this every time but how has it already been 3+ months since I last wrote a health update? Actually… that being said… how is it already November? I swear this year went: January, February, March – November! where are these months going?
I think you’ll have guessed by now through some of my other posts, that since the last time I wrote one of these updates, ALOT has gone on!
It’s been a complete rollercoaster mentally, emotionally and physically and I’m not afraid to say there have been times I’ve really struggled. I’ve gone through some tough times since we last spoke health and I won’t lie to you when I say this update isn’t all that jolly.
I’ll be honest, the last few months I’ve received nothing but rubbish news time and time again. My poor 22 year old body is a complete mess at the moment and I and my team are struggling to get it back on the right track. So, just know that when reading this, regardless of the news I’ve received and what my body is currently going through, I really have tried to remain positive and see life on the brighter side.
Anyway, let’s get into this update!
Neurology / First Botox Treatment – 10th Of August
Back in February, I went to see my Neurologist up in London who deals with my chronic migraines. Unfortunately, the steroid treatment I was on for 6+ months had failed at relieving my migraines so we came to the conclusion that trying Botox would be the next step. We had hoped that I’d start my Botox treatment in April but corona happened and my appointment got pushed back.
I finally got an appointment to see the Botox nurse on the 10th of August.
So I met with my Botox nurse and she spoke me through everything that was going to happen. She explained that the first Botox treatment doesn’t usually have an effect, it’s usually the second, possibly even the third round of Botox which you may begin to notice changes with. Botox basically relaxes the muscles around the head therefore, reduces blood pressure in the brain. Botox is known to reduce the nerves ability to send pain signals to the migraine, in turn, stopping the migraine from being so severe.
I had 31 injections over my forehead, back of my head, neck and both shoulders. I had 155 units all together. The injections were okay, I will say that the back of my head injections did sting but that only lasted seconds.
I’m currently still scoring my migraines on the pain chart at around a 7 to 9. I’m hoping with the second dose of Botox, that the score will begin to get lower and lower. I’m next due for my second round of Botox on the 9th of November.
Urology / Catheter Placed – 12th Of August
This is a update I’ve been going back and forth in my mind about sharing but I feel it’s something I need to talk about in order to raise awareness for Ehlers Danlos Syndrome.
Back in February when I last saw my urologist, I had mentioned I was concerned about bladder leakage everytime I laughed, sneezed or coughed – we decided to try larger self-catheter sticks in order to hopefully drain my bladder fully. corona hit not long after that appointment which just made me put the bladder leakage to one side and I’d hoped to bring it up again when I saw my urologist next. Well, towards the end of July, I lost complete control of my bladder very suddenly. It was no longer just a leak and instead I was fully urinating without warning (which is totally different for me as usually my bladder retains urine, hence the self-catheterising as I usually can’t urinate by myself).
We left it a few days to see if it would stop by itself but instead it was getting worse. I was urinating multiple times a day so I rung my urologist secretary who then got my urologist in touch with my catheter nurse and together they decided that placing a catheter for a short amount of time to try and strengthen my muscles was the next step. So I had a catheter placed on the 12th of August.
Catheter Update – November 2020
So, I had the catheter placed on the 12th of August and we agreed, that in 4 weeks time, on the 8th of September, I’d go back and have the catheter taken out in hopes of finding out wether it had worked to strengthen my bladder muscles or not.
I had my catheter removed on the 8th, and within 5 minutes of having it removed I’d urinated twice. This meant that not even an hour after removing the catheter, I had to have it placed again. I was absolutely devastated that it hadn’t strengthened the muscles in my bladder. I was told by my catheter nurse that my bladder at this point had lost all elasticity thanks to Ehlers Danlos Syndrome and this is most likely a permanent problem.
My catheter nurse has put in for me to have an appointment ASAP with my urology consultant but due to corona, his list is backed up for months. So I have this catheter in permanently until we come up with a new solution. The next step could possibly be having Botox in my bladder to paralyse it.
If you yourself or someone you know has had a bladder catheter placed, then you’ll know the one downside to having a catheter placed is the infections it causes! Not even two days after having the catheter placed, i began to get urine infection symptoms. For me, with a catheter, the symptoms are intense spasms, blood clots, darkened urine and I get the most horrific smell when emptying the bag. So I was placed on antibiotics straight away. I’ve now had the catheter around 12 weeks and I’ve been on 9 different oral antibiotics, I’m on a everyday antibiotic called trimethoprim and I’ve had intravenous antibiotics in A&E and STILL this urine infection won’t go away. Of course, the positive here is that my catheter is stopping me from urinating myself but the con is that the infections are horrible!
Diabetes Diagnosis – 25th Of August / Diabetes Update – November 2020
If you haven’t read my ‘New Diagnosis’ blogpost ( https://ellegracedeveson.com/2020/08/31/my-new-diagnosis/ ) then you won’t know that I’ve been diagnosed with Diabetes. It’s been a very long few weeks learning my new ‘normal’ which entails constant blood tests, testing my glucose & ketone levels multiple times a day and urine tests. The diagnosis defiantly came as a shock, I wasn’t expecting it but once I was diagnosed, I soon realised that some of the ‘newer’ symptoms I’d be experiencing were actually due to being diabetic.
I’ve had multiple phone calls since my diagnosis with my diabetes nurse who in September started me on a tablet treatment called metformin. Over the last few weeks of being on metformin, I’ve noticed that my blood sugars are still very up and down, basically they aren’t under control so my metformin has been upped and hopefully I’ll start to see a difference in my sugar levels soon. If not, the next step will be insulin.
I’m still getting your everyday symptoms with diabetes – increased urine output, thirst, dry mouth, fatigue etc, but it’s something I’m learning to live with. What’s a few new symptoms ay?
Gastroenterologist Phone Appointment – 28th Of September
Like my bladder, my bowel has also been playing havoc with my body. I won’t go into too much detail as TMI but let’s just say, I’ve gone from one extreme to the other, very very quickly.
My bowel actually went from one extreme to the other around the same time as my bladder going wrong, so as you can imagine I’ve been quite a mess. Both my bladder & bowel dysmotility is down to Ehlers Danlos Syndrome but we can’t be sure wether both of them going wrong at a similar time is linked or not.
I’m not going to lie, I am defiantly concerned about my bowel situation, so I ended up ringing my gastro consultant who rang back a couple of weeks later. We had a good conversation about everything which is currently going on and my worries. She actually mentioned that it is very common with my bowel condition that my bowel can go from one extreme to the other, very quickly and unexpectedly. It’s tough to hear as we don’t know what will happen next. Will I go back to the way my bowel was before? Will this ever be sorted? God knows, but I’ll stay hopeful.
Meanwhile, my consultant had ordered me to have a CT scan on my bowel, pelvis and liver to see what’s going on. It was meant to be on the 15th of October but let me tell you, it was a blooming nightmare. I got into the CT scan waiting area on the 15th and they took me straight through to the specialist nurse who places the cannula. She knew before meeting me that my veins are incredibly difficult to get to. 7 times… 7 is the amount of times this poor nurse tried to place a cannula. 2 times were done blind and 5 times were done with an ultrasound machine yet still it wasn’t working. In the end, she came to the conclusion that I need a midline placed in order to have the CT scan done but unfortunately, my consultant has to refer me back to have that done so I wasn’t able to have my CT scan like we’d hoped. So I’m currently waiting for a new date to have my CT scan done *rolls eyes*.
Liver Ultrasound – 2nd Of November
Back in September a blood test of mine showed that I had raised liver levels, insinuating that I had an enlarged liver so my GP wanted me to go for a ultrasound to check my liver and basically give us an estimate of how enlarged it is.
I did have an appointment for mid October but unfortunately I was unwell so we rescheduled for the 2nd of November. Anyway, I went for my ultrasound and when I got there, it had been requested that they also scan my kidneys, pelvis, spleen, gallbladder etc. Guys, you wouldn’t believe me if I told you but i came out with TWO new illnesses. Oh yes, you heard right, my body didn’t think my current illnesses were enough, it’s also now decided to give me gallstones and fatty liver disease too!
It’s funny, you’ll understand this yourself if you have an illness or multiple, that when you experience new symptoms, it can often be difficult to determine wether they are due to a current illness or the beginning of a new one and that’s been the dilemma for me for 7 years now. I had been experiencing pain at the top of my stomach and my reflux has been significantly worse but I have a bowel problem, so I just put it down to that. Well now I know it’s actually due to gallstones. I’ve been referred to a surgeon who will make the decision on what treatment they’ll do for me.
Thanks to my diabetes being out of control, I’ve now developed fatty liver disease also. There is no current treatment for NAFLD so I’ll have blood tests every 3 months to keep an eye on it!
Gastroenterology Video Appointment – 3rd November:
After my phone call in September, we’d agreed to have a video appointment on the 3rd of November so my consultant could be updated on my bowel situation.
Unfortunately, regardless of the treatment options we have tried, my bowel is still in a bad way. We’d hoped by the time of our next appointment, that we’d have seen some changes but that sadly isn’t the case.
So she’s decided that I need to have a SeHCAT scan which is 2 scans, one week apart to check for bile acid malabsorption, a emergency flexible sigmoidoscopy test to check for inflammation and to have some biopsies taken from my rectum, a poo sample to be sent off and a CT of my bowel. Yup, it’s a lot but it’s defiantly needed. My bowel is in a bad way (mind you it has been my entire life, just seems to have worsened recently), causing me a lot of pain and making me feel rubbish.
We also spoke about having a Picc Line or Portacath placed due to my veins collapsing and no longer bleeding back when placing an IV. It’s something she’s leaving me to think about as like anything, there are pros and cons to both lines being placed. It would 100% make sense for me to have a line placed as I’m having bloods drawn frequently, I’d be able to have IV fluids prescribed and have my medicines changed to IV but the cons to having a line placed are weighing heavy on my mind. I’m going to give it a think over the next couple of weeks and hopefully come to a decision!
We spoke for over 45 minutes which was nice as I really felt I got my main worries across as did she. A lot of tests to be done, a decision to be made and an appointment has been arranged for 2 months time. So I’m hopeful we’ll have gotten somewhere by then *fingers crossed*.
As you can probably tell by everything I’ve written above, the last few months have been very hard to deal with BUT, we move forward, we continue to fight and somehow, I’ll always find the strength to carry on regardless of how weak my body currently is.
I honestly can’t tell you how thankful I am to have you lovely people supporting me, giving me words of encouragement and just being so wonderful towards me. I appreciate you more than you’ll ever know!
That’s today’s update for you. I apologise, it’s another long one but I know you like to keep up to date with everything going on with my body.
Sending tons of love and hugs to you all as always,