Well hellloooooo there again … Long time no speak :P
I'm gonna jump right on in. So, following my hospital trips, I had an appointment with my specialist the Wednesday of the next week. He took me in alone this time without my parents and asked me exactly what had been going on and what I wanted to do from here. I told him everything and said that I was feeling so much pressure and once he found out I wasn't even taking my medication because I couldn't he said that a feeding tube was where we were going to go. He didn't want to do the PEGJ tube that I had last year because now that I have the pacemaker, it would be too risky to do as it is more invasive and could end up damaging the pacer wires - the last thing we want to do right now! So, the way forward was having a Nasojejunal Feeding Tube. I've had this type of tube once… and lasted a record time of 5 days. This time however, I'd done my research and had spoken to friends with Gastroparesis and feeding tubes, so I was a lot more aware of what having a tube felt like and involved and such. Last time, I had great difficulty getting on with the feeling at the back of my throat so asked for a kiddy tube :) always knew I was a kid at heart HAHA. For those of you who don't know what an NJ (nasojejunal) Feeding tube is, I shall explain. So, the tube goes up your nose, down the back of you throat, through you tummy and ends up in your small bowel/intestine (otherwise known as the Jejunum) which is where your food usually ends up once your stomach digests it. This is where nutrients and stuff actually gets absorbed into your body.
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| This is what it looks like :D My Tube is Called NIPPY THE TUBE |
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| Casually Taking A Selfie During A Lunch Break What? I can't eat during it - gotta keep myself occupied some how :D |
Right, so we agreed on a tube being done and also he suggested trying a course of Hypnotherapy - which of course, comes with a hefty bill. The hope is the hypnotherapy will either help my symptoms of pain and nausea by retraining my brain OR if not that, then hopefully retrain my brain to accept medication. For whatever reason, be it genetically or my brain being a complete numpty, my body is not accepting or responding to medication. Hopefully it'll do one of the two and allow me to be able to eat by mouth and enough of it to take the tube out. The tube is there to give us more time and take a
weight off my shoulders whilst giving my body what it needs and stop it going into shut down like it was doing. 2 days after my appointment with him, I had a call saying my date to get the tube done was on Wednesday. YES 5 days after and 1 week after deciding to have it done. It was certainly all systems go. So, what's the first thing I prepare….. SURGEON TED!! DUHHH - For those of you who don't know or don't remember, my teddy I've had since I was born has a surgeon outfit from when I had my pacemaker fitted back in 2012. So, I whacked out the outfit and popped it right back on him again. On this occasion, he wasn't performing the procedure. He was over seeing one of his students (the Dr. who did my tubes last time) and teaching HAHA - oh gosh…. I'll never grow up :D |
| Good Old Ted Ready To Go |
Anyway, November 27th came and off we went to the hospital to get the tube put in. The nurse who did all the paperwork and checked my allergies and all that was a tad bit…. special lets say. She asked when the last time I ate was (baring in mind you usually have to fast before an endoscopy which is how it is put in). When I told her that I wasn't sure and was about 2/3 months now she said ''yeah, but when was the last time you ate?'' - So, i politely replied ''about 2/3 months ago as I can't eat by mouth hence why I am getting the feeding tube''. My mum and dad are sitting in the bit just outside the cubical and are wetting themselves by this point. She then replied to me by saying ''oh, really, you eat nothing by mouth? But, when did you last eat - I have to put it on the form'' - This went round in a circle for about maybe 5-10 minutes… AND I'M NOT EVEN KIDDING YOU. I was fighting back the laughter attempting to come out. Once she left the room, we all just burst out laughing and I even had tears from laughing so much …. I did make sure she and the Doctor were both FULLY aware that under no circumstances did I want to be awake for the procedure. Not after my last endoscopy and this would have been 10times worse. So, in order to make sure that I wasn't awake, the Dr gave me 2 different types of sedation and gave me 3 times the amount he would have usually. I think it's pretty safe to say, I was COMPLETELY out of it - for the procedure itself and for the rest of the evening HAHA…. I slept GREAT though :D!!
My pump and feed and all the stuff that goes with it arrived on the Friday from Abbot (the company who supply everything you need when tube feeding). You always know you have a chronic illness when you are actually excited to see what the feeding pump looks like as it's a new, all improved one from the last time HEHE!! I was like a kid on Christmas Day when I opened it. It is the cutest pump, so easy to use and set up and comes with a rucksack as it is a portable pump. The rucksack has a choice of 3 colours - blue,red and black. I went with black… goes with everything :) It even has it's own little stand so the back can stand on its own. Pretty cool if you ask me… but then that might be the mind of someone who gets excited by this kind of thing. Here are some pictures of the bag and the pump all set up with my feed going :)
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| My Snazzy Friend |
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| The Snazzy Rucksack Taking ''ON THE GO FOOD'' to a whole new level! |
It's great. I love it. It's so quick and easy to set up each day which makes it all feel so much less like a pain to do (especially when you need to disconnect it at 5 in the morning to go to work HAHA)
You always start the rate that the feed goes through slowly and build it up as your body gets used to it. I started out doing 20ml/hr and raised it 10ml/hr each night. 50ml/hr seems to be the best so far where I don't feel sick or in pain. I tried 60ml/hr and ended up feeling sick and getting cramps in my stomach, so I've put it back down and keeping it at that for the time being. Unfortunately, the lower the speed the more hours you need it on for so that you can get enough of it. It is a 1000ml bottle and the community dietician that came to my house (same one as last time) recommends I have between 750ml-1000ml a day to get my weight back up and stable. Well, if you do the maths, to get the whole 1000ml in at a rate of 50ml/hr would mean having the feed on for 20 hours of a day. Not so practically if you are still working like I am (of course)! So…. we are trying to figure out a way round this… maybe I will have to do it for 15-20 hours a day and speak to managers and see if that would be ok having it in its cute snazzy backpack. It is plain black so technically it would match my uniform if that counts? HAHAHA
I'm not going to lie. After I had the tube put in… My throat was SORE!! It was hard and painful to swallow especially being that I have a swallowing problem as it is. My nose hurt from the tube rubbing (and still does on the side of it) and I could barely turn my head without it hurting too. I was pretty much downing Strepsils and any form of throat sweet and spray. They didn't do all that much but it did get easier as the days went on. Now, 2 weeks on, I can barely feel it at the back of my throat unless I turn my head to the left for some reason. It's still rubbing on the side of my nose which isn't great but together with my mum we are working out the best ways to tape the tube to my face that is both comfortable for my throat and face and that also holds. Its taken a while, but we're getting there. It's a work in progress. But hey! I've beaten my previous time of 5 days and feeling much less achey and definitely have more energy. I'm back taking my medication again so the nausea is also much better once I take it. I have overcome the fear of going out into the 'real world' outside of the hospital with the tube which I never had to do last time. It honestly wasn't as bad as I thought it would be. A couple people stared but nothing too horrendous and customers (and work) have been so amazingly supportive and it has given me a chance to spread even more awareness about my condition when people ask what it's for. Particularly some of our regular customers who had no idea as I've never gone round telling everyone at work - I just got on with it and always had a smile on my face. I think I've definitely gained more respect from some of them… Not always a bad thing :D Myself and a fellow Gastroparesis friend have named our Tubes/Hickman lines for the funsies as many people do who have tubes and feeding support and such. So…. Say hello to NIPPY THE NJ TUBE :D hahahaha
I have my first Hypnotherapy appointment in Harley Street, London on the 20th of this month. 5 days before Christmas up in London…. Yep! That should be fun. So fingers crossed that goes well and the lady thinks it'll be beneficial to me.
Well I think that covers just about everything for now. So, I shall leave you in the festive spirit as we have got only 2 weeks to go now until Christmas. We gave the dog a small make over…. Doggy Christmas Style :D
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| HO HO HO MERRY WOOFMAS |
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| This dog is CRACKERS - get it? crackers? it was from a cracker? HAHA ok - I'll stop |
Question For the Post: Have you ever seen someone with a feeding tube and made a comment/ Have you had a feeding tube and what was your experience with it? Comment below :)
AND REMEMBER
STAY STRONG
<3
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