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Gastroparesis


Chrissy
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Hi. After months of constant vomiting and chronic diahrea, I have just been diagnosed with Gastroparesis. I would have never even known about this if it weren't for this Forum! I am so thankful that I can come here for answers. 2005 has been the worst year of my life. I received my official POTS diagnosis in August 2005 but became very seriously symptomatic in Dec. 2004. I am also waiting for the results of Lyme Disease testing. Also thanks to this forum and the caring people that participate in it and answer questions and recognize symptoms. We will see a Lyme specialist on Jan 12th. I feel like my whole body is shutting down. They suspect something called polycystic ovary syndrome as well and I am going to have an ultrasound done tomorrow. I just can't imagine what else can go wrong. Every time I go to another doctor, they add another medication to my collection. My heart rate has been staying over 130 even though I take Topral every day at 10 am. I need to call and see if I can take it twice a day. I have a very hard time with solid foods. I worry that eventually I won't be able to eat it at all and will need a liquid diet. I have read on the Forum that some POTS patients are on feeding tubes. I am curious if this is because you could no longer tolerate solids as well. What will my future be like. I can't even imagine what I will be like this time next year. I do accept my condition and handle it very well but I just don't understand how I can just keep going downhill like this. I do have alot of faith and I trust that God has a plan for my life. I hope I can get some answers for those who can relate. I would really love to hear from those with LYME and Gastroparesis so I can find out how you deal with each day. I do believe the POTS caused the Gastroparesis. And if I find out I have Lyme, I believe I have had it for many, many years and it is probably what caused the POTS. I may never know the truth about how this all came about. Thank you for your continued support!

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Guest Belinda

Hi..I have also been diagnosed with gastroparesis and that was just in the last few months.

My problems with GI, is constipation everyday, and once in a while I have diareahh(,nothing in the middle)

I ws having chest pains and while in the hospital they did upper endoscopy and it revealed reflux(which I already knew about), and the gastroparesis,I also have horrid esophageal problems spasms, and sometimes it is hard for me to even swallow a teeny pill.

This stuff is very tough daily for me, as I have just finally been diagnosed with POTS.

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I don't have the main problems you discusses but I do take Nadolol in morn and at bed to keep heart rate somewhat normal. My prayers are with you. It osunds like you have the drs. lined up. I'm sure they will find something to help you.:-)

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Hi Chrissy,

I was just were you are just four weeks ago. Though I was told that I could live on Boost/Ensure that wasn't very reassurring to me! But the GI doc at Mayo prescribed Domperidone. I had to order it from Cananda, but it has been a miracle med for me! I am eating solid food and even gaining weight.

I DO still have to be careful and stay away from very much fiber and fat. I've experimented with a few things this past week and did OK except for the oatmeal I tried this morning. But, I can live without oatmeal when I can eat other things like Rice Crispies etc. I just wanted to see how I did with it.

If you need more specific info on what and how I eat, just ask - PM me or I'll try to check back on this post again soon. There really is hope!!!

BTW - I get boughts of diarrhea too!!!!

~Roselover

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Hi Chrissy

I dont have the diahrea, I have chronic constipation. without meds I do not go to the bathroom. And they dont work all of the time. I wish that I had some answers for you. Hope you start to feel better soon. Vanessa

Hi. After months of constant vomiting and chronic diahrea, I have just been diagnosed with Gastroparesis. I would have never even known about this if it weren't for this Forum! I am so thankful that I can come here for answers. 2005 has been the worst year of my life. I received my official POTS diagnosis in August 2005 but became very seriously symptomatic in Dec. 2004. I am also waiting for the results of Lyme Disease testing. Also thanks to this forum and the caring people that participate in it and answer questions and recognize symptoms. We will see a Lyme specialist on Jan 12th. I feel like my whole body is shutting down. They suspect something called polycystic ovary syndrome as well and I am going to have an ultrasound done tomorrow. I just can't imagine what else can go wrong. Every time I go to another doctor, they add another medication to my collection. My heart rate has been staying over 130 even though I take Topral every day at 10 am. I need to call and see if I can take it twice a day. I have a very hard time with solid foods. I worry that eventually I won't be able to eat it at all and will need a liquid diet. I have read on the Forum that some POTS patients are on feeding tubes. I am curious if this is because you could no longer tolerate solids as well. What will my future be like. I can't even imagine what I will be like this time next year. I do accept my condition and handle it very well but I just don't understand how I can just keep going downhill like this. I do have alot of faith and I trust that God has a plan for my life. I hope I can get some answers for those who can relate. I would really love to hear from those with LYME and Gastroparesis so I can find out how you deal with each day. I do believe the POTS caused the Gastroparesis. And if I find out I have Lyme, I believe I have had it for many, many years and it is probably what caused the POTS. I may never know the truth about how this all came about. Thank you for your continued support!
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I also have gastroparesis with diarrhea. I had an EGG that discovered that I had almost no movement of my stomach. There is some there, thankfully, but it is slow when it happens. However, whenever any food hits my intestines, its transit is very rapid. I have found some miracle drugs that help. I take ultram for the diarrhea actually. A motility specialist told me to try the opiate pain killer and it was amazing. I went from agonizing GI pain and diarrhea 5 times a day with nausea and esophageal spasms to diarrhea only about once a week. The pain is much better. The upper GI stuff has been much more difficult. I take zelnorm in a very small dose before meals and bed but it is not the perfect fix. I heard domeperidon was better, but I can't get it and my doctor is worried about getting it for me secretly since I have so many other issues. However, the zelnorm does push food through and I put on about 30 lbs on it (was 15-20 underweight before). I am hungry a lot now, which is weird too, but usually good. I can eat more foods too. I do have to watch my diet though. Search online for the gastroparesis diet- it works. I started with two liquid meals a day, one medium sized meal and snack and worked up to a normal diet. I also have celiac sprue so I have to watch even more closely what I eat too. For the esophageal spasms, I take nulev under the tongue or even ativan (it is anti-anxiety, but it is also a smooth muscle relaxant). With the zelnorm, you have to be careful with the balance so you don't get the diarrhea side effect. I take only 1 mg each time and the recommended dose is way higher. Sometimes, I get the side effect if I don't follow the 30 minutes before a decent meal thing. But, it has all been worth it. I used to make a sloshing sound when I moved from alll the fluid in my stomach, but now I am able to conduct a normal, slosh-free existence. Now I even have to lose 10 lbs! I do still have nausea almost constantly and lots of spasms upwards. I get heartburn and had throat damage from the acid up there (I sleep with the head of my bed tilted and I take nexium and protonix). I fixed that and can sing again, phew. These conditions are very difficult especially when upper and lower do not have the same motility disorder. Good luck finding the best solution for you. I made it work and I hope you can too.

Leah

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I also have gastroparesis. I found this out Feb 2005 and POTs March 2005. I've been taking reglan and would like to try domperidome to see if it helps with the nausea.

Post us on the results of your lyme test. I am curious about this for me since I got seriously sick 2 weeks after camping. It could just be coicedence.

Their are some on feeding tubes and alot that have stayed the same or even gotten better.

None of us know our future so try not to worry and just hold on to your faith. It will get you through.

I'm a member on a gastroparesis site. If you do a search for yahoo groups gastroparesis it will come up. another one is G-pact.com

You can always email personally if you want to talk more about this.

dayna

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hi chrissy -

i too have GP as well as dysmotility/slow transit in my small intestines & colon. i've had it for years to some degree but MUCH worse in the past year. while you may never be "normal" things CAN improve. in short, i had 4 months last years where i was unable to tolerate much other than fluids. we were talking about feeding tubes, GI pacemakers, etc. Boost, Ensure, Snapple Fruit-a-Days, Gerber Yogurt drinks, & Boost Breezes were my mainstays for a good chunk of this year (along with my gatorade of course) and for 2 months i couldn't even keep down Boost or Ensure (b/c of the fat, even though minimal). this time last year i was hospitalized for a week b/c NOTHING would stay in me. so i DO understand where you're at. and it was (and still is) scary b/c obviously we need food to live. that's why for me my GI issues, when severe, are scarier for me that some other things. b/c while i don't like having to catheterize myself several times a day (b/c of bladder problems) it's a pretty clear "fix"...much more so than the GI stuff. but i digress. for me i still have flare-ups - usually a few days a month - wherein if i eat more than fluids and a few bites it doesn't stay down - but for the most part i can eat relatively normally. not totally comfortably, but doable. after losing 35 pounds in several months i've gained it all back and then some. for me a combination of zelnorm & mestinon have been most helpful. i take reglan periodically but cannot take it regularly as i began to get some scary neuro side-effects.

one other thing - not at the exclusion of the GP but in addition to - have you had your gallbladder checked for motility? this was a part of the picture for me that had to be taken care of before we could effectively treat the gastroparesis & dysmotility.

others have given you much of the info i would have about other support groups, sites, the GP diet, etc. i don't have any personal experience with lyme or lyme testing but do have other "separate" health problems so can understand the frustration & difficulty of trying to sort out what is what, cause & effects, etc.

hang in there & good luck,

:) melissa

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How did they test for this? I cannot eat a thing without taking my medication...Kytril. Which over Christmad break slowly stopped working...so I tried doubling the dosage. I can now at least eat half a piece of pizza and a little soda at any one meal sitting. The nausea is debilitating. I cannot take Compazine, Inapsine or Regelan (sp?). The Zofran doesn't work anymore either. And now the Kyril, which was really the last resort is slowly not working anymore. My doc is at a loss as to what to place me on anymore.

He thinks that I have some auto immune issue where my body fights its way around all the medications I am on making them unuseful anymore. I am so afraid that is what is happening. Because we are at the end of all the lists of meds for many of my problems.

This eating issue is getting out of hand. I lost another 10 lbs this past week. My doc said the last time that he thinks they need to do this test where they give you something to eat or drink and they watch it flow through your system and watch how your brain responds to having food in your stomach. If it is a stomach/brain connection issue, they can place what is like a pacemaker in your stomach or neck to stop that response and you can eat again. This is the last thing I need, but I am afraid that I am not going to be able to avoid this.

Chirstmas was horrible due to this. I was in bed not eating or drinking a thing for 3 solid days. The naesua was horrible. The worse it has ever been. And it just increased the dizziness. When I tried to be up...even to get my medication, I would start sweating. Dripping wet sweating, like I had just run a marathon. I have NEVER sweated like that before...not even when I was younger, working out or doing sports. I was very gross.

Anyway...I am just looking for answers.

TIA.

Lisa

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You said you had some kind of ovary problem. I have had an ovary pain off and on for a few years now, they never know what's wrong, always saying it's just painful ovulating. It can be excrutiating at times and then they say it was just a cyst. What sort of problem areyou having with that?

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