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Gastroparesis.. Update After Pacemaker Was Put It. It Hasnt Worked :(

I posted a story almost 2 years ago about having gastroparesis. At the time i had had the feeding tubes and was waiting for the pacemaker to be put in. well an update from then. I had the pacemaker and it seemed to work. for about a month after surgery i could eat whatever i liked and was just starting to get back into the swing of things. I was over the moon that it had worked and i could finally get on with my life and continue my career as a dancer. About a month after surgery i had just began my new weekend job and i had my lunch and all the symptoms that i had had before surgery were suddenly back again.

Since then my Doctor has tried the pacemaker on all sorts of different settings and none of them work.. sometimes the pacemaker is turned up so high it vibrates under my skin and moves which is very painful and makes me sick. Before i had the pacemaker i had pain associated with my gastroparesis but i believe now it is worse. im ok as long as i dont move but after ive eaten lunch the pain is unbearable. I am still swollen like an 8 month pregnant woman after eating anything and it is all getting to much. The pacemaker is now turned of and is due to be removed as it is doing more harm than good. i have seen various different doctors about getting my stomach removed but as i am 18 years old they are very unkeen to do such drastic surgery without knowing the outcome. i could end up worse than i am now.

At the moment i am controlling my pain by taking Tramadol. its very good for pain but makes me sick and dizzy,drowsy and gives me the shakes.. i take cyclosine for sickness. there is nothing i can do about the bloating so i just try and wear baggy tops to stop people staring. I just want some restbite from it all. i was training to be a professional dancer but i have had to give that up so am due to be starting my degree in nursing and later midwifery. i want to help others and feel like i have a purpose. rather than being a burden to everyone all the time.

Gastroparesis is such a horrible disease as so little is known about it. i am lucky that i live in london and have the NHS to pay for my treatments and medications. I know in america a lot of people are turned down by there insurance companies becuase it is not a recognised treatment. this must be very dissapointing but remember that it doesnt always work.

I am feeling more positive these days becuase im finding ways to deal with my situation. it doesnt make it better but it does make it easier. my friends and family dont really understand how i feel. how could they? when they dont have to deal with this everyday.

Anyway that was just a little update for you guys.. anyone with any questions on the pacemaker or gastroparesis or feeding tubes. feel free to contact me :) nt n

Dancer17 Dancer17 16-17 5 Responses Jan 11, 2011

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I have a sister that has had GP for about 4 years, she too has the J tube and the pace maker. It seem to work alittle at first but now it is not working. She has the feeding tube. My heart goes out to all of you. I see my little sister going though this and all I can do is cry for her. She is 49 and my baby sister no matter how old she is. She is gotten to were she cannot eat anything. She looks swollen all the time. I agree this is a horrible diease and I just pray to God that one day there will be a cure for this. May God Bless you all.

im sorry you are going through such a hard time with this.. i have GP to i am 15 years old and currently have a picc line in and maybe a stomach tube. it has been very tough on me being in high school and everything i had to miss 2 months of school and i was on my swim team and i had to stop that and wont be able to do that for a while which was devastating for me. so i can understand what u are going through with your dancing. as well i was a was a puzzle to the doctors and they told me that it was all in my head for a while which didn't help a thing. once i found out i had GP i was actually happy to know that i wasn't just making this up and i actually had something wrong with me. this diagnosis had been very hard on me though i have very little energy and i currently eat nothing and am experiencing extreme nausea and vomiting. my friends at school have a hard time knowing how hard this is for me.. i mean how could they, but it has been hard i don't go out with them anymore due to to nausea and ect. but in the end it should start to get a little better in time, which makes me very optimistic. i hope they can find something to help u not be in so much pain anymore. thank you for telling your story it has gave me hope to see how optimistic you are.

I am so inspired by your strength and positive attitude. It encourages me to 'keep chuggin' as I am newly diagnosed with GP, and also have had little to no success with what the doctors have tried so far.<br />
I am so sorry that you had to give up your dream of becoming a professional dancer.. I somewhat know how you feel..<br />
I am also 18 years old, and in August 2010, I headed to Missouri for college. Everything was fine, and then I suddenly got sick and couldnt eat or drink anything. I lost a bunch of weight and was a complete puzzle to the doctors. They ran test after test and found nothing wrong. Then they ran the gastric emptying study and diagnosed me with GP. Since then they have put me on Reglan, which hasnt helped, and they recently injected botox into my pyloric muscle of the stomach, which also has shown little success. Now I await my next appointment to discuss the pacemaker. All of this going on has forced me to withdraw from college.. and there's no telling when Ill be able to go back (although I have my heart set that I will go back in the fall, I have to play it by ear to see if the GP is under control or not). <br />
Thank you for sharing your story and your update, it has really encouraged me.

Your story really touched me. You're such a strong young woman to continue on your journey and with such great spirits. Keep fighting! Although I don't believe I have GP I have been experiencing problems for several months which have yet to be diagnosed. I often feel like a burden and hate complaining about my pain, etc. Sometimes I wonder if people think I'm making things up or exaggerating. Although I can't possibly understand what you're going through, I am always willing to listen. If you're anything like me, sometimes you just feel bad for talking to those around you about it all the time. Yes, I know I'm a stranger but my heart is big. I wish you nothing but the best!

I am so sorry.I wish there was a cure .Medicines are becoming more advance as well as cures.Maybe one day there will be a cure that works.