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.
Let’s hope so!
I am tough. I got this!
Katie's Journey 