Endoscopy #2.
It was touch and go that week as the whole house fell crook with a coughing virus and I thought surely being off all my pills (was asked to stop all supplements prior so have literally been off them since my breath testing (Vit B Complex, Vit C, Magnesium). I took a few sneaky Vit Cs and hoped for the best. The day came and I was snot and cough free so off I went.
It was later in the day so I decided to bus there. Thought if I was going to be laid up for the afternoon I ought to get some exercise. I masked up and got through town in good time and arrived at the clinic 15 mins early.
They took me fairly promptly and I did my pre-procedure stuff, got changed, toilet stop and waited... what seemed like a while, until I was called in. Nurses were still getting set up and I answered a few questions. They said "you were here not long ago?". Correct! They had found something which looked a bit sinister in my distal esophagus and I was there for another biopsy to see if we could figure it all out.
The nurse had trouble finding a vein in my arm and after sticking the needle into my nerve decided to give up and wait for my specialist to insert a cannula in my hand. They commented on the colour of my hands and again said "your veins are so delicate". Of course they are! ive been food and fluid free for 12 hours... dehydration not helpful. I explained my circulation issue and reassured them my hands were ok, they were just cold which makes them go purple.
My specialist arrived and asked how I had been? I said doing ok as I had been to dietician for a chat, we had a plan and I was slowly working on getting some weight back on. I advised him that my throat was pretty ok after the last biopsies and that I was looking forward to an update of where we were at.
After a very painful few minutes he had a cannula in my hand and we were off. Little did I know that later than cannula would be snagged and its removal caused a blown vein which took a good week to sort itself out.
Meds on board and throat spray in I drifted off and remember less about this one... and woke up being taken to recovery. There I felt really slow. I could hear the machine and new my bradycardia was playing up and that my blood pressure was low as even lying down I was dizzy. On my last reading before I mobilised I asked her what it was sitting at and it was about 91/62 which is low but pretty standard for me. I took my time getting dressed and only fell over once, luckily I was close to the ground trying to get on my converse boots.
Once next door and my throat had woken up I was served a vegetarian dairy and gluten free sandwich and to my delight a Kombucha, even my favourite flavour. The nurse came and read my results which was the ulcer had mostly healed, things looked healthier and he took more biopsies of the nodules. He was happy with what he saw, so that in itself was good news for me.
Its been a about 1 week since the procedure and to my surprise my results came in via GP. It seems that my distal esophagus had sustained injury from what appears to be gastro-oesophageal-reflux. I had a sneaky suspicion that was the cause even though my surgeon had ruled it out in the first instance.
So, where to from here? Looks like i'm back to the dietitian to think of a new plan and probably scripted more Elemental Drinks as the list of foods I can consume is growing smaller by the minute. I never thought there would come a time when I would not be allowed chocolate, soda or coffee.
I see the new Gastroenterologist in 4 weeks time to go over my results from my breath tests and to talk about motility. I think that's definitely going to be an issue relating to my EDS and also now by most recent reflux situation. I've already started to make improvements to my diet (cutting out the stress eating, the chocolate, x1 coffee a day and really trying hard to stick to the Low FODMAP, low Fructose diet now it seems I need to work on the Reflux stuff too. Crazy though as I was hunting high and low but I found a book! The Low Fodmap Acid Reflux diet, so Im kind of feeling like there is light at the end of the tunnel. My E028 (elemental supplementation) seems to be going ok, the problem is I actually prefer the drinks to eating, I was having them for breakfast and lunch but finding i was still hungry after tea so mixing it up starting tomorrow and going back on my low fodmap cereal early morning and supplementing lunch and maybe an after tea, or second one in the afternoon... i'll see where I need it the most.
Lots of reading, lots of research... and lots of waiting. So the story goes...
