Author Topic: Gastroparesis anyone???  (Read 293 times)

ktfabian

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Gastroparesis anyone???
« on: March 07, 2019, 02:19:15 PM »
After spending the year from, well you know the place, we've all been there there, I finally have a diagnosis of gastroparesis. I've had periods of vomiting once or twice a year for about 10 years, but last Jan., it started to be every month for 2 weeks, then I'd just about get better and it would start all over again. I was in the hospital 5-6 six times, in the ER I don't even know how many times at this point and lost 40 pounds without trying.

Diagnosing it was tricky because I have a morphine pump for a back injury, so they couldn't do the test to see how long it would take to food to pass through my system, the pump would always give a false (or real) positive. But after a colonoscopy, 2 upper endoscopies all with biopsies, and a boatload of Ct Scans, Ultrasounds and whatever else they could think of and being seen by the same Gastroenterologist while in-patient a few times, they finally came up with gastroparesis.

I've done ok with the gastroparesis/FODMAP diet, but it seems every time I have things going along pretty smoothly, something comes along and knocks me off course, like an antibiotic or really bad stress. I plan to go back to my therapist to deal with the stress, but I'm having a really hard time dealing with this.

I know I don't post much, but I didn't know where else to go where someone might understand. I mean, first it was the back injury and 3 surgeries, an attempt at an implanted stimulator for the pain, then pullling that out and finally a fusion and I was feeling good, then I messed it up in a car accident. In the meantime,  I was diagnosed with fibro, then Sjogren's and did Rituxan infusions for 7 years until they realized my immune system was going too low. They stopped the Rituxan and waited for things to bounce back, but they didn't, so now I get IVIG. But that was after I had 13 sinus infections in 1 year and the stupid doctor  and the doctor ordered levaquin 13 times and I had a torn aquilles tendon twice and ended up with 3 foot surgeries. There have been other fun things in there, but those are the ones that come to mind right now.

I know I'm depressed. I haven't been able to do anything for a year, I've barely made it to the weekly BINGO game in my building, and that's become the highlight of my week.

If anyone has or knows anyone with gastroparesis and could offer some advice for getting on top of it, I would really appreciate it. I'm having a really hard time dealing with this one.

Thanks,
Tracy
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55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.

irish

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Re: Gastroparesis anyone???
« Reply #1 on: March 08, 2019, 10:55:24 AM »
Hi, I remember you going through much of these events over the years....never a dull moment is it. The only words of wisdom is something that is an old, old trick used with people with chronic constipation or the elderly. Sit in an old fashion wooden rocker and rock a lot when you can. This sort of stimulates the GI tract and helps to move things through. Might be worth a try. Good luck. Let us know how it goes. Irish

ohiolady

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Re: Gastroparesis anyone???
« Reply #2 on: March 08, 2019, 07:01:33 PM »
I have gastroparesis for about 11 years now. I take Domperidone every day. This medicine is for motility and helps to move the food out of your stomach. It has been a lifesaver for me and gives me some quality a life and allows me to be eat. My gastroenterologist prescribes this medicine for me. I get mine from a pharmacy in Canada. I hope this information is helpful for you.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

ktfabian

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Re: Gastroparesis anyone???
« Reply #3 on: March 09, 2019, 05:09:18 PM »
Thank you both, Irish and Anna.

Irish, I remember rocking colicky babies when they were little. Maybe a little rocking won't hurt me, it's certainly worth a try.

Anna, I've read a few people on different lines who take Domperidone and have said it helps. I don't actually see my gastroenterologist in his office til May. I've seen him several times while I've been in the hospital and  he's only prescribed Reglan as needed so far. My family dr. wanted me to try erythromycin but that made my stomach an even bigger mess. Does sticking to a pretty strict diet help you at all? I've done ok so far as long as I follow it pretty much to the letter but any new medicines throw everything off balance. I guess I have a lot to learn.

Thanks again to both of you,
Tracy
________________________________________________
55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.

ohiolady

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Re: Gastroparesis anyone???
« Reply #4 on: March 09, 2019, 06:26:58 PM »
Domperidone is much safer than Reglan. If you are doing fairly well you would probably only need a small dose. If I didn?t take Domperidone I would throw up often. Erythromycin has a lot of side effects and isn?t effective after using for awhile.
Best wishes and keep us posted.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62