This blog is about my fight against adversity. It will cover my story, my struggles with my mental and physical health, and will also cover things that I feel help me overcome and fight my battles.
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!
Hope everyone reading this is okay. And if not, that’s okay. It’s okay not to be okay – don’t forget that!
Since my last post, I’ve overcome one of my bad spells and so I’ve been feeling pretty good.
Normally a few days following one of my bad spells I have a tendency to gain an appetite. So my love of food has been quite good lately.
I even went out to a lovely Indian restaurant on Saturday with my partner and it was very enjoyable.
I love Indian because of all the spices. I love spices and anything with a kick to it.
Despite not being able to eat a lot I still make sure I enjoy different tastes and flavours. I love experimenting with food and trying new things… which makes a change to me 8 years ago where I couldn’t even look a slice of toast.
The previous week has been a great week of recovery. Not only did I have a good appetite and generally feel well in myself, I achieved another milestone… I passed my theory test!
This means I’m one step closer to being able to get my license and drive!
How exciting!
(Here is a photo of the amazing food we had at the indian restaurant)
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!
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 😂
Earlier today I had a call with my consultant. Turns out my new tube has possibly moved position so gonna have to maybe go back to have another x-ray and possibly have it re-done. It’s okay though. I can do this 👍
I posted on Instagram and Facebook the above as well as a selfie of me with my thumb up.
Because I know deep down I can do this.
But my feelings on the surface are not the same.
I’ve been crying ever since that phone call.
It’s only something small that can be easily amended.
But to be easily amended means more hospital visits, more let downs and probably another painful, horrible procedure.
And of course if this doesn’t work it means back to my old tube. Which means I am to continue suffering with the leakage.
At the moment I feel like there’s no way out.
My condition is always going to be around. In whatever shape or form. There’s always going to be complications. That’s my life.
Deep down I know I can cope, and I know it’s no where near as bad as it has been or could be.. But I’m finding things a bit hard at the moment.
It is so tempting to just tell everyone, including medical professionals, that everything’s okay. That I’m thriving. Because if I did that, they’d leave me alone. Yes, I’ll have to struggle with the leakage and discomfort but at least I’ll have no hospital visits, no being taken out of my day to day routines with work etc and just my “normal life” in general.
I can’t win. I either choose to live a normal life but suffer with discomfort or try and get a result, try and feel better but have my normal life disrupted.
I’ve done it before. I’ve done it most of my life. But I like the normal day to day life. When a hospital visit happens, I dred it because I’m scared I’m going to get too comfortable with a hospital life again.
Has anyone got any tips or any words of encouragement?
I’ve got this… I keep telling myself that. I’m trying to convince myself that although things seem tough.. I am also tough. And despite the challenges I face, I somehow always get through them.
Recently with regards to my physical health, I have had trouble with my peg feeding tube.
You see, I’ve had this peg feeding tube for 8 years now and within the last year or so I’ve been experiencing leakage from the tract (the gap where the tube slots into in my stomach). This, in turn, has cause the site around it to be sore, uncomfortable and sometimes painful.
It started off leaking only a little but then it became more and more excessive.
(Sorry this next bit might be a bit graphic)
The leakage includs acid from my stomach mainly (this is a yellowy colour), contents of food I’ve digested, and sometimes blood.
It has been uncomfortable, painful, and super annoying (my amount of times I’ve had to change clothing because of the amount its leaked!)
I’ve seen many nurses and spoke to my consultant a few times about this. I’ve tried different size tubes, different dressings and creams to go onto the site around the tube due to the burns I have been receiving from the acid getting into contact with my skin.
Nothing has seemed to work and I’ve wondered why all of a sudden there is so much leakage!
I had an ocd (camera down throat into the stomach) back in May to see if there was any issue inside of my stomach that’s causing the excessive production of acid/mucus. From this, they did pick up an infection which I was given antibiotics for. But apart from that, everything else looked okay.
Before I went down for the ocd at King’s, I was seen by a peg nurse who examined me and asked me questions about the leakage. She prescribed me a cream and requested I see her in a couple of months time in her clinic.
So in July, I saw her in her clinic and mentioned that things hadn’t improved and that I was tired and frustrated that this issue keeps happening and won’t end.
She talked to me and explained that we could try and jejunostomy tube.
The difference between that tube, and the one I currently had is that a jej tube is longer on the inside and goes into the bowel. The one I currently had, and had for 8 years is a gastro tube meaning its short and just enters the top part of my stomach.
She reassured me that it all looked the same on the outside so the maintenance of it would be the same. I wouldn’t do anything any differently to how I’m using the current tube. It just means its got an extra port to feed with.
I was willing to give anything a go, and had been for a while.
She said that this tube is longer, and has a weight at the end so will pull it down a bit and hopefully make the tube tighter to the skin, thus closing the gap where my insides could leak out.
I agreed to giving it a go and was told it should only take about 20 mins and that this procedure has to be done in hospital under x-ray. And it has to be done every 6-9 months.
This was slightly different to how I was changing the other tube. The other tube, I was changing myself every 3 months in the comfort of my own home. This new tube meant I had to come in to hospital for a few hours to have it changed.
But that didn’t really bother me.
Anyway, the day came at the beginning of this month (August).
I arrived in a day ward, was given a gown and had a blood test done. I was then seen by the doctors who explained the procedure. Again, I was reassured it should only take about 20 mins (I didn’t quite believe that though.. when it comes to my stomach nothing is that easy 😅)
I was right to believe it wouldn’t take 20 mins.
When I was called down, I was wheeled into a theatre where they prepped me by putting loads of sheets of paper/plastic like material over my body, just leaving the area of where the tube is uncovered. An x-ray was hovering over me. They covered the area that they’ll work in, in an antibacterial liquid that cleans the area. They put protective barriers around my chest. I think this was to protect me from getting anything in my face, but also may be so I don’t see anything.
This scared me a little as it felt like I was having surgery. I mean, technically I kinda was.
I had to be awake for this procedure which I wasn’t keen on but I understood that there’s no point putting me to sleep. They wasn’t cutting me open or anything.
They began by taking a few x-ray images of the current tube in my stomach and planned out where they need to insert the new tube.
They then decided to numb the area of the skin around the site so that I wouldn’t feel too much discomfort. They injected me with local anesthetic This stung like a b!
Anyway, they went and did their thing. Took out my tube and replaced it with some wires which they inserted into my stomach so that they can use it as a guide when putting the new tube in.
Even though they numbed the area, I still felt pressure and occasionally discomfort inside my stomach as they prodded and poked.
All in all, the procedure took nearly 2 hours! Due to my stomach not being a normal shape or size, they had trouble finding the entrance to the bowel, which cause some issues.
I remember laying on the operating table trying to distract myself by thinking of nice things, thinking of what I’m going to do after like go for a coffee or something (I love an iced coffee at the moment!) The doctors and surgeons in there were talking to me, helping to try and distract. But occasionally I felt pain or some kind of uncomfortness which took me away from distracting. It wasn’t pleasant.
I was a bit of a wuss and did start tearing up. I was scared. I didn’t like what they were doing and to be working on an area of my body where I am the most sensitive and protective over… it was daunting! I couldn’t move either as I had to stay completely still.
I was so relived when they finally got the tube where it needed to be and it was over!
I was cleaned up and wheeled back into the ward. They wanted to monitor me for an hour or so and make sure I was eating and drinking before I left.
Once I was allowed to go, I couldn’t wait to get home! I did plan with dad (who came up with me), originally that we were going to go for a coffee down the road after but following the procedure I just wanted to get home!
It’s been nearly two weeks since the procedure and I can actually say that I’ve noticed a bit of a difference. I have still leaked a couple of times. But it’s not as much as it has been.
I have had a catch up with a doctor over the phone and she has advised me to keep an eye on it and any problems give her a call.
I also have a phone appointment with my main consultant on Monday.
It’s early days but I am hoping this tube helps, even by a small percentage. After all that it would be really frustrating if it has done nothing!
I am due to have it changed next February. I have been told it shouldn’t be as bad as the first time as they will have the new tube as a guidance.
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”.
December 2020 was the last post I accomplished on this blog.
To be honest I decided to give it up. I mean, there wasn’t much else to talk about. I ran out of ideas. I felt like my life was “normal”. Besides, who actually reads my posts nowadays?
That was my train of thought.
It’s only recently that I’ve thought about starting it back up again. I’ve had new insights and goings ons with my health, so maybe my life wasn’t as “normal” as I thought it would be.
I mean I have got a chronic illness after all. Just because I have a good spell doesn’t necessarily mean it’s going to last. With a chronic illness there is always something that creeps up on you .. mainly when you least expect it.
I feel almost scared to feel relaxed and happy as I know something is waiting for me round the corner.
I’ll give a proper update very soon (I promise) but a brief summary of what’s been happening for me lately includes; some big milestones in my “normal life”, my mental health declining and a new tube insertion.
I feel like I’m living two lives.. a life with a chronic illness and a “normal” life. Sometimes it’s hard to balance. And I’m not ashamed to say I’ve been struggling a bit lately.
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 😉😜
I began having what I thought was one of my “bad spells” on Thursday.. I thought okay, I know what to do… I’ll have to have a day off work today but Within the next couple of days I’ll be feeling back to my normal self…
Boy was I wrong.
Friday morning I woke up feeling okay. I thought ok the worse part is over with now.. Time to take things easy but also try and get back to normal.
I had a double blood test booked in early that morning. It was a glutton intolerance test so I had one blood test taken, then was given a high sugary drink, then was told to wait in the waiting room for 2hrs before having my second, and last blood test.
After having the drink I felt nauseous. I didn’t feel right at all. I was told it can make you feel sick but I thought she meant just a bit.
I sat in the hot waiting room (I wasn’t allowed out the building) with a mask on… Feeling sick and eventually tired. I wasn’t feeling myself at all.
I went to have the second blood test and explained my symptoms to the nurse. She said that was normal so I just went with it.
Fortunately they didn’t have trouble getting any blood out of me on both attempts!
I went home, hoping to start feeling better once I’d had a tea and some biscuits (I’d been fasting all morning) and I also hoped to get back to work (I’m currently working from home anyway so can take things easier than what I would do working from the hub)
However a bit of time went on and I seemed to be feeling worse. The nausea increased, I had a headache, my chest felt congested and I felt super tired. There was no way I could work like that. So I contacted my boss and explained the situation. She was super understanding with it all.
I spent the rest of the day mainly sleeping or just not moving at all from the sofa. I had no energy whatsoever.
Eventually a cough started… And I just did not feel myself at all.
I had a bad night Friday night and spent all of Saturday again either sleeping or just trying to distract myself whilst not moving much.
The symptoms hadn’t got better but yet they hadnt got worse.
I went to bed at 9pm last night and woke up about 9am this morning… Which is super rare for me!
This morning I woke up, had a little bit of energy so I had a wash, got dressed and put some make up on to make myself feel a bit better (gone for the dark shade of lipstick… Why not💄🤷♀️😅) . I normally find if I look good then I feel good…
But even though it had a slight effect on me for a bit, overall it hasn’t done much.
Currently I still feel tired, I still feel sick, I still feel congested, I feel like I need to cough but can’t, I’ve still got a headache and now on top of that all, I’m having sharp pains in stomach and I feel achey all over. Oh and also I’ve got a constant strange, metallic taste in my mouth (I can still taste and smell things tho)
It looks like it’s just a bad cold/normal flu luckily though.
With all that’s going on physically, It has now started to take its toll on me mentally. I feel low and useless. I have always hated feeling unwell as I feel like I’m letting people down and I feel very unproductive as I can’t do as much as I can normally.
Could really do with some hugs right now. I hate this 😭
Cue the selfie I took this morning… When I had that little bit of energy and actually felt that maybe I was getting somewhere
Katie's Journey 