Jejunostomy Feeding Tube Changed!

View from the hospital window Floor 11

On Wednesday 14th May evening I realised my   JejunostomyTube (A jejunostomy feeding tube (J-tube) is a tube surgically or endoscopically inserted through the abdomen and into the jejunum (the second part of the small intestine) was leaking from the stoma site, I had terrible pains for a long time. When I first had the tube inserted 18 months ago I had no problems with it. No pain whatsoever. But since December 2013 I've had dozens of infections with the tube. It would leave me in extreme pain to the point where breathing would hurt too much! Leaving me in agony.  It came to the point where it became resistant to antibiotics and that was scary.  The pain would feel like I was being stabbed constantly unable to find the right position to sit, stand or lie down.

My dad was very supportive and asked If I wanted to go to A&E (it was almost midnight) I didn't go that night but got ready first thing in the morning to go to the royal london hospital. We called before going to tell them what had happened. We arrived at the hospital around 12pm and by this point I was really dehydrated and nauseated due to the tube being split. 

We were very luck and were seen pretty quickly and the on call doctor was a gastroenterologist (It must have been fate lol) I'm really thankful to that doctor he set up things pretty quickly. We thanked him a lot but he thanked us saying you came prepared with everything as we took all my medical notes, medicines and other general things; he said we made his job easy.

After a long struggle of finding a vein for a cannula (three Doctors tried) I guess third time lucky. I was set up with IV fluids and was given Anti-sickness medicine (Cyclizine) a point to note It stings a lot but I've become use to it so not that bad.  We were given a rooming A&E for a couple of hours before they could find a bed for me on the wards. Finally, a bed was found and the Doctor told me that they will change the tube on Friday 16th May. I was very anxious that I will have to go to surgery again but that anxiety was pushed away when I was told it will be done by radiology team. So no anaesthetist required.

Friday came I was really looking forward to my tube so I can start my feed and gain my energy and be able to walk without falling.  

I went to the radiology department waited for a while before the Doctor who was going to perform the procedure came to see me. My dad wished me luck and said he is right here with me and to stay strong! I'd like to stay strong for him and my family! They are my rock! 

Figure1) Showing Gastrostomy and Jejunostomy

Procedure:

The procedure was simple and pain free.

I was put on the table and an X-ray was taken first. Then a Tubogram was carried out. What this is a Live X-ray where contrast is put through the tube to see if its in the right place and also to see if it had holes in it.  The feeding tube had many holes further down the jejunum. They said this could have been the reason why i was suffering from a lot of infections.

I was Lucky enough to see all this as the screen was facing me, Its such a wired yet great experience. I mean who gets to see there insides? lol

Then the head of the tube was cut so a wire can go through the tube. The wire was guided carefully in a few occasions the wire got kinked or stuck this was easily fixed by pulling it out and was re guided it.

Next the old tube was pulled out slowly while the wire was held by their hands to avoid pulling it out with the old tube.  The old tube had turned completely black and seemed eroded. Afterwards the new tube was guided through the wire and this too kinked a few time it didn't hurt, it just felt wired! an X-ray was taken it seemed in the right place. To be certain contrast was put through the tube to see if it was in the right place. The Senior doctor said they ad managed to put it further down in the jejunum so if any case it gets pulled a little it still would be in the jejunum.

Finally the wire was taken out slowly and the heads and coup of the tube were placed on it as well as this water was injected into the tube it felt okay no pain whatsoever. Just weird! I had stitches done to hold the tube in place.

I was back up on the ward and was told to start water for a couple of hours then the feeds and that I can go home. I started the water slowly and it felt fine.

I hope my experience of changing the tube helps some people going through this. It may seem scary but your not alone! If you have any further questions to ask feel free to message me x

The New Feeding Tube

Hafsa

"Making the invisible visible!"