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.
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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 :)
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 :)