Peg Troubles

I feel a bit lost tonight.

I had an appointment today to attend Kings College Hospital for an X-Ray of my abdomen. This was an appointment that got arranged following me chasing up a doctor last week.

You see, I’ve had ongoing issues with my tube leaking. (If there are any other peg/tube feeders out there who have also had leaky tubes then please feel free to share your experiences and advice. It would be much appreciated 😊)

The leakage was bad before I had this new, longer tube put in. I thought having a longer tube would resolve it. But it hasn’t unfortunately.

Up until today I believed it was because the tube had moved into a new place. (Its supposed to be in my bowel but I thought it moved back up into my stomach)

But today has proven that the tube hasn’t moved and is in fact in the place its meant to be.

This is a good thing as it means I don’t have to go through the hassle of them removing it and doing it all over again. But it’s also a not so good thing. As part of me was hoping to hear that it has moved as that would be the explanation behind the excessive leaking. But now I still have no idea why its leaking so much.. Still.

The other option as to why I’m still having troubles could be that the infection I had back in May is still around and so causing build up of fluid and stomach acid in my stomach.

I was given antibiotics to fight this infection following it’s discovery but didn’t have a follow up to find if the infection had gone.

I am currently chasing this up and unfortunately it is proving a challenge due to delays in communication. But I’ll get there… hopefully.

I currently feel lost as I just feel like there is no way out of this situation.

There’s been another appointment arranged for next month to discuss with another consultant further options available to me. But I doubt theres going to be much, if any.

I’ve coped for so long with the discomfort of the leaking. The constant changing of clothes, the not being able to wear certain outfits in case of leaking, the constant changes of dressings. All probably small things to some. But it takes so much effort. Sometimes I don’t bother. Then I feel uncomfortable and unclean so have to have a shower to clean myself up.

I’m half just settling on carrying on as I am, not bothering to keep crying out for help as I don’t feel like I’m getting anywhere, and half wanting to keep pushing. Keep trying to get my voice heard.

It’s starting to really affect my “normal life”. Its affecting the way I think, the way I act. Everything.

If anyone can help. Anyone with peg feeds, tubes etc going through similar. It would be very appreciated!

Thank you 😊

Bad Spell returns

Hi everyone!

I was hoping to do a post a couple of days ago but unfortunately I was hit by one of my bad spells.

Monday I was feeling fine. During the day I was feeling fine. I was planning what I was to do this coming week. All seemed good.

I went to bed Monday night feeling ok originally. Then about an hour after plugging myself into my pump and drifting off to sleep, I woke up feeling really sick and my chest feeling tight.

That’s when I thought oh god here we go.

I tried working from home on Tuesday despite feeling rough and just about managed it. I tried again Wednesday but only managed a short day as by that point my body was exhausted and the nausea had increased.

From Tuesday to yesterday I felt horrible. Its my usual “bad spell” though so I should be used to. Well you’d think so but no.

I struggled to breathe sometimes. And the pain, nausea and regurgitating (yes it sounds horrible but I can’t physically vomit and so when I feel sick my body attempts to let whatever out that way but fails) all was horrible.

I struggled to sleep at first but then it must have caught up with me because I suddenly felt so drained and yesterday I slept practically most of the day.

Today is the first day I’m feeling a bit more normal again. I managed to get out of bed, be a bit productive and work from home, and also I managed to have a refreshing shower. I’ve had a couple of baths whilst ill as they tend to help with the acheyness I get. But there’s nothing like a refreshing shower! And I managed to wash my hair (which hadn’t been washed for a few days so really needed it!)

I am still feeling a bit tender and sore but I’m feeling better than I was.

Let’s hope this lasts and another bad spell isn’t due anytime soon!

Possible dislodged tube and new pains

As I’m writing this I am in agony.

I’ve had a couple of good days but I’ve also found something.

I’ve had this sharp pain in my back that appears after eating.

It’s only been happening within the last few weeks. Thinking about it, it’s only been happening since my new tube has *possibly* moved.

I’ve been having my excessive leakage and discomfort come back. I had a week following the procedure, of no leakage at all – with which I thought great!

However after a week of comfort, I started to have leaking again. And it progressively got worse – to the point where its now where it was before I got this new tube.

It feels like a never ending cycle! Whatever I do, nothing works.

I figure it may be because my new tube has moved position – from my bowel back to the stomach, because I had a chat with my consultant last week and she mentioned that it seems funny how I had 1 week of no leakage then suddenly it all came back.

So it’s being arranged for me to possibly go back up to King’s for an x-ray to see where it is. Then possibly a repeat of the same procedure to get it back into the right place.

It’s so frustrating!

And ever since its moved, I’ve noticed everytime I eat, I get a sharp pain in the back. It only lasts about 30mins to an hour, but it has been very painful.

It is hard to say if it is the tube though as I’m okay when I wake up in the morning, after having my feed.

It’s just when I eat.

Might be trapped wind..😂… as my stomach isn’t in the normal place so I could get trapped wind in places where you wouldn’t normally.

But I’m awaiting a call from a doctor and am going to mention it then.

Who knows what this new pain could be.. I just want it to go.

If its not one thing, it’s another.

It honestly feels like its never-ending when it comes to my condition.

I’m so tired mentally and physically. It feels appropriate to wear this jumper from Lolli Clothing at the moment 😂

Behind the Scenes with a Chronic Illness pt2 mental health

It can be a challenge. Having a chronic illness.

You don’t know what you’re going to be like or how you’re gonna feel day in, day out.

You feel like your condition controls you and you feel out of your depth at times.

You sometimes feel lonely.

When you start feeling like you have control, your condition flares up. This basically feels like, to me, my condition is saying “haha you thought you were in control and getting on with your life but you thought wrong”.

I’ve felt like this lately. I’ve had a procedure undertaken involving replacing my peg tube with a different size which had to be done under x-ray in hospital. It wasn’t a pleasant experience and was quite scary. (I’ll explain further in my next post).

The reason I had it done was because my previous tube was leaking excessively and causing me discomfort. I had to fight and speak to many doctors, consultants and nurses to request a new tube which was tiring.

I knew the other tube was the issue therefore why I needed a different size.

That’s another thing about having a chronic illness. The constant fighting to get what you need. The repeating of hospital visits and treatments.

The feeling of a hospital procedure or treatment not working.. again.

It’s frustrating and upsetting as all you want to do is get on with your life.

I’ve struggled lately. The new tube I’ve had inserted (which was a pain to insert… literally) so far seems to be better than the other tube but It’s still early days and I’m worried its not going to work. I’ve had procedures and treatments in the past where there have been promises that this will work, but then it doesn’t. And I’m so used to that now I feel like I have lost hope.

I don’t see the point in requesting treatments or hospital procedures any more because I know the outcome.

There’s nothing out there that will change the fact I’ve got a chronic illness. I’ve just got to live with it.

And that does effect me mentally. I may not show it all the time but I am mentally and physically drained.

The thing is part of me feels I should be used to it as I’ve been in and out of hospital and had an illness all my life. But you don’t get used to it.

It’s a battle I’ll never win, so I’ve just got to hold tight and ride it.

It’s part of me and I can’t do anything about it.

The strength within me to carry on and fight is still there. It just hides from time to time.

I’ve been taught to think that someone always has it worse and to be grateful that it isn’t worse. But lately I’ve been thinking that it’s okay to have moments where you are unhappy. As below says, if things are bad for you, things are bad. I shouldn’t feel guilty for feeling the way I do. My trauma is valid.

As long as I don’t give up in life, it’s okay to feel this way. Things are tough for me occasionally. But I’m allowed to think “why me”.

A belated Merry Christmas and an Early Happy New Year

Hello!

Hope you’re all doing well and had a good Christmas – I’m currently sat stuffing my face with Quality Street.. Doesn’t everyone do this at Christmas/ between Christmas and New year??

Come to think of it what do we do during the time between Christmas and New Year? We don’t know what day it is, when the bins need taking out, what time it is etc etc.

Anyway.. Just thought I’d wish you all a belated very merry Christmas 🙂

I’ve had a good one despite the circumstances.

It’s been a while since I last posted hasn’t it? The last post I made was with regards to me feeling poorly…. A few days after that post I tested positive for corona😳.

Fortunately, after plenty of rest for a week or two, I felt well again. I was one of the lucky ones. I had the cough, I had the flu symptoms and I had the loss of sense of taste and smell. (the taste and smell did come back after a few days but left me with having random burning smells and a heavy feeling on the nose every now and then).

I had another test a couple of weeks after testing positive as I felt well and wanted to make sure it had gone before I decided to slowly go back to work. Fortunately the second test was negative.

So yeah, it’s been one heck of a year.

It’s been hard. There’s been so many lows. But yet there’s been a few positives (no covid pun intended).

I have some plans for the new year to do with my personal life as well as my career and I’m really looking forward to making these plans a reality. (I may make a post about these plans very soon👀)

Im hoping 2021 will be a much better year.. For all of us!

Here’s to a hopeful and better new year!

Take care and stay safe.

Katie

Have a photo of me balancing a tub of quality street on my stomach… There are some perks of having a stomach that sticks out 😉😜