Botox for gastroparesis

Hi everyone,
I haven't been on here for a while as have been really down and not coping very well. I went to see the gastro specialist last month and he was really helpful and has always been great. He is referring me to a psychologist so I can talk things through with a professional. I have now been j tube fed for 4 years and I am still not retaining any oral intake. My g tube is simply for venting or decompression if I feel sick. My weight is maintained because of the nutrition which is great. He also has to refer me back to the endometriosis and PCOS specialist as I have been having severe lower abdomen pain. I took my sister along this last time I saw the gastro specialist and am going to take her along to my next appointment for my PCOS specialist as the last time I saw him he was arrogant and rude and I cried after I saw him because the whole appointment was so aweful. I have been so exhausted and was so down that I actually contemplated doing something to myself which I would not have normally thought about as I do not normally let things get me down. The Sunday after I had gotten really down I went to church and had a whole group of people pray for me up the front of church. Knowing that you have so much support is so important and made me feel a whole lot better. I also have some really good friends at church that run a health shop and have been providing me with really expensive probiotics free of charge which is such a help.
My sister (who is a physio) has just heard that one of the hospitals here is doing botox for gastroparesis and it is successful in some patients. Has anyone had botox for gastroparesis and found it helped? This other hospital also works as a team so the gastro specialist works with the psychologist who works with the dietician and the district nurse so she is trying to get me into the trial. I am seeing the dietician in the next week so am going to ask her about it.
Today I got an email from someone we bought something online from and he came to our house yesterday. He said he was "sorry to hear about my illness". I got a bit upset cause I actually don't want to be the person people feel sorry for but I am at the moment. I am always positive and I think sometimes I don't let people know how I feel and how much it is affecting me because I do not want pity. I am so lucky to have amazing friends who see through my stubborness and even just a hug on a bad day is great. My husband has also been amazing and we are celebrating our 10 year wedding anniversary at the end of this year. I just celebrated my 36th birthday and got showered with amazing gifts from family and friends.
Anyway, thanks so much for letting me vent. Hope you all have amazing people in your life to support you as well.
Be

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Hi Be,

I had the Botox injections done a few months ago. According to my doctor it does help in some people and if it doesn't help there's no harm done. It wears off after a certain amount of time, this can differ from person to person. For me personally it didn't do much, it made me curl up in a ball of pain for a day or two and after that I was back to throwing up most of my food and the 'usual' pain. The direct pain I had after the 'surgery' was probably because of them messing around in my stomach and my stomach disagreeing with that.

I have heard stories of people who were helped by this, others who found some relieve for the first few times and than it wore off and also others like me who didn't get anything out of it.

I hope this helped a little bit.

Best,
Kerstin

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I have had Botox injections several times. I think that it does help-for me at least. The first time I had it done, I had to get used to and modify what and how much I ate. It seemed like whatever I took in(liquid or solid) went directly into the intestine. It was an uncomfortable feeling. The sensation didn't last very long and now I don't notice it at all. The nausea and vomiting have improved enough with it for me to continue getting the injections. I've heard that most people do not have any problems though. Good luck. Praying for you

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My wife had this done, along with a "stretching" of the pyloris. They used 100 units of Botox. She saw no improvement in her worst symptom which is chronic nausea. We later found out from a specialist at the U of M Hospital in Ann Arbor, MI, that they use 200 units of Botox to get results. We have not yet gone back to have the higher dosage administered. She saw no other adverse reactions to the procedure.
If you have it done, you might want to check to see how much of the Botox they will be injecting into the pylorus. Botox is expensive and some doctors / insurance companies may not want to use the dosage that U of M Hospital has found to be effective.
If it works for you, there is a doctor in Pittsburgh that is perfecting surgical procedure to open up the pylorus to allow the stomach to more easily empty. She is known as "Dr. Pittsburgh" on some of the GP forums. Hope this helps.

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i had it done but it didnt help me but my dr did say some people it does and others it doesnt it was worth a try for me i went through alot of pain for awhile afterwards i know when i had it done it may not work it was a slim chance for me but dont let that change your mind ill keep you in my prayers it sounds like you have a wonderful group of friends who love you good luck to you!

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I've had Botox injections into my pylorrhic sphincter for my GP, and have found them helpful. Good luck, Candace

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Hi biffydog,
I live in New Zealand so probably won't be able to see the Dr in Pittsburgh. Thanks heaps for your input though. I am looking at having it done publicly here so it won't be costly.

Thanks and regards,
Belinda Munro

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