Olanzapine Vomiting and Retching Reliefer!

Hello Everyone!

I hope you'r all well (as best as you can be) and that your having a Good day/ Night.

Quick Update:

It has been a long time since I last posted on here, this was dues to me being feeling unwell after getting my new jejunostomy tube. The tube placement it self was not painful but I had to get used to the feed again from the beginning starting with 5mls/hour. I'm pleased to say that my feed rate has increased and gone back to normal of 110mls/hour and that I'm feeling much better! 

Good News! 

I will start with this quote from my Doctor "we need to stabilise the gut by stabilising the brain".
My consultant has seen many patients like me with the same problems, feeing tubes and have got them better and living without a tube. One extremely important advice he gave me was "don't loose faith!" He is the only doctor that has told me that  there is a life for me that does not involve doctors having to punch through my abdomen making holes to feed me through it and that is extremely important to remember.


My consultant said that he will start me on Olanzapine (Zyprexa).  Olanzipine is a sedating medicine so it will help me sleep and will help stimulates my appetite. It comes from a family of drugs called major tranquillisers and also called antipsychotic. He said to me its important to remember that he is not giving it to me because I'm psychotic; he is giving it to me because it just so happens that the brain chemicals and the area of the brain that it works very good at helping with retching used in patients who have serious vomiting problems to stop them vomiting. It is a drug he prescribes commonly with the combination with citalopram. It does not come in liquid form but come in tablet form that melts on the tongue in seconds. He said that I would have to take it at night time.

Furthermore, my consultant has been amazing and that I'm so lucky to have him. He says one advantage I have is that he has seen me quite earlier on in my illness; people struggle with this problems for year because they are told they have an eating disorder. when I was admitted in some of the doctors had written to him to ask if he is sure its not an eating disorder. He said he had to be quite careful not to be rude he doesn't think this is an eating disorder! (thank God! finally someone believes me! I'm not anorexic or bulimic!). The problem is that it has an appearance of looking like an eating disorder particularly in eyes of an untrained eye and it can even be argued with eating disorder experts that it isn't a typical one. he doesn't buy it he says "its to an eating disorder. Thats not how he's looking at it or treating like it. yaaaaay!!!! finally!!!! it was extremely good to here that. don't let them upset you don't let them put you off was what he told me! And that is really comforting.

There are a couple suggestions he was going to make they were: 
Firstly Olanzapine people may start looking at you funny because its used to treat schizophrenia -ignore them. I'm getting it for the problems I have not someone else. Increase citolapram with it. persevere with  it even if I'm retching it may take longer but will help.  Educate the doctors involved with me. That I must not be treated as though I have an eating disorder. he has seen people after 5-10 years stuck with the diagnosis of eating disorder. This is not an eating disorder! 

Fast forward 3 months! 

It has completely stopped my retching to zero! I used retch 10-15 times every half an hour! It has helped my nausea a lot to the point where I have stopped taking cyclazine! It has also helped stop vomiting not completely but has reduced a lot! I now only vomit when I eat! Also whereas before every time I ate I would vomit within seconds and now food stays down longer sometimes half an hour or one or two hours. Although at the end of the day I still vomit the for I eat it has been a MAJOR achievement! Positive improvement.  Its been magic!

I suggest all my GP sisters to go and try it out ask your doctors and maybe it will help some of you! My consultant has told me there is much more work to be done until I'm not dependant on the tube but we will get there. I will be seeing him next month and can't wait to see what else we are going to try.

Thank you for reading Please share this it may help someone.

Lots of Love Hafsa xxxx :)

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!"