Enterra for Severe Gastroparesis

Medicines
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I have suffered with Gastroparesis for years now, but it has gotten to the point where i am on every medication under the sun, and i have still ended up in the hospital with such pain, nausea, and even sepsis from blockage and impaction in my stomach and colon. It wasnt pleasant.

Not only have i had all of those issues, i have had to deal with crazy, wildly spiking and crashing blood sugars. ALways unpredictable. This is a terrible Motillity problem which, as of yet, cannot be solved…Until now:

My GI Specialist who has been treating my Gastroparesis for years now, wanted me to see and “Ultra Specialist” in Motility problems. However they were scattered around the country and nowhere near my home. The idea was to have this device, which is kind of like a pacemaker, implanted in my tummy and send currents of minor shock waves to cause my stomach, colon and intestines to push the food through my body so that it would not get stuffed up or impacted.

I did my research on this the best i could. It has such horrid potential side effects that i dont think i will be a guinie pig for the trial. It requires constant monitering and adjustments by another type of specialist who deals with this particular issue

Currently i am on Domperidone, Motegrity, Xifaxan, Ducolax, Miralax, Zofran (for the nausea,12mg sublingually ) and enemas.You would think that all this medication would cause some sort of crazy diareahha. Nope Nada, Nothing. just frequent visits to the hospital to treat the impaction and the sepsis.

Is ANYONE out there in FUD Land going through this (to ANY extent) who could chime in and share their story. No judgment here, just compassion and information gathering. I wouold love love love to hear from you. Surely i cannot be alone.

thanks in advance, Daisy Mae

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Oh @daisymae , I’m so sorry to hear you’re going through this.Hope someone can help you find the information you need to get relief.

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Hi @daisymae,
I appreciate you sharing your experience with this. I wish I could give some insight, but I don’t have any knowledge about this subject at all.

But whatever you learn will certainly help not only you, but will also help someone else down the road.

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@daisymae So sorry that this continues! I will write more regarding my fun times with gastroparesis a bit later, but…
When it was really bad, my GI doc had me take Reglan (Metoclopramide) 30 minutes before eating anything. It wasn’t a cure, but it allowed me to eat. Silly question, only because my having mine removed really helped the situation, but do you still have your gallbladder, and if so, has your GI doc ever checked on its health?

I don’t know if my GI dr, Steven Freedman at BIDMC Boston, does virtual visits, but here’s his # (617) 667-2135, if you want to check him out. He does mainly specialize in pancreas problems, but he’s also referred me to some really good specialists.

Like I said, when I have more time, I’ll go in to the nitty-gritty details…

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Im appreciate all of your info sharing!! Thanks so much for your generosity . And, whenever youre comfortable sharing “down the road,” i would love to hear all about your nitty gritty details. It will help me to feel less isolated and alone during this situation. (and possibly lingering into the future…)

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@daisymae I am so sorry you are dealing with this. I don’t have direct experience, but I just went to Reddit, which can be a dumpster fire, but there are sometimes worthy nuggets of advice and information to pull out. I am going to try to link my google search for you and you can see which links have the most comments, or just check them all out. Sending so much love!

https://www.google.com/search?client=safari&rls=en&q=enterra+for+gastroparesis+reddit&ie=UTF-8&oe=UTF-8#ip=1

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Yes, I still have my Gallbladder. But my problem is with my Tummy, not my gallbladder. Im confused. Can you b more specific?

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@daisymae
Sorry, I’ve been meaning to explain that part, and write more. Basically, you wouldn’t fracking believe how interdependent all the parts of the GI tract are on each other. And I’m sure your GI dr has ruled out your gastroparesis being affected by other parts. In MY experience, I still have flare-ups of gastroparesis, but they aren’t the same since my stomach surgery, which was supposed to be a modified whipple but turned out to be much more, including removing my gallbladder, which was horribly inflamed. My GI dr said he thinks that my gallbladder was sending weird messages to my vagus nerve, thus exacerbating the gastroparesis. As much as doctors know about the human body, there’s still a lot of guesswork involved…
I know that’s no comfort. I still get wigged out when it hits, and I know that I’m in for a hell of a bg rollercoaster ride, nevermind the waves of nausea and general ughiness.

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Mariethm, thank you so much for your feedback. You are now the second person who has mentioned their gallbladder with regard to Gastroparesis. No one has ever mentioned this as even a remoste possibility. Mine seems to all be connected with my tummy, intestines, and colon. But the symptoms are similar. Not exactly the same but definately similar.Recently i received my Domperidone in the mail from Canada and i invested in some MAXimum Strength GasX. Both have been helping. No more nausea, no more cramping, no more stool backup. But i do have to take these medications religiously or else the symptoms come bk in a flash.I cant forget to take even 1 pill. Does this sound familiar to you even though its your gallbladder? My GI has never mentioned anything other than “Diabetic Gastroparesis.”

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Daisymae, my gastroparesis wasn’t completely caused by my gallbladder. But at one point before the stomach surgery, it got really really really bad. Apparently, my GI dr had presented my case at a conference, brainstorming before working with my surgeon, trying to figure out if I’d need a second surgery to have a feeding tube implanted in my tummy. (Nobody had thought to move the CT scan over to the other side from my pancreas to check out my gallbladder.) At that point, I was taking Reglan (a dopamine antagonist like the one your on), but would take it 30 minutes before eating, forcing my stomach to empty itself, just so I could put more in my stupid tummy!
Yeah, I use a lot of Gas X still, and sometimes look pregnant after a normal sized meal or even a few bites, and should probably use the Canadian form of Reglan (not approved in the US for more than 90 days use in a lifetime; much like yours that is now banned). But I did develop some bad facial tics, which still come back when I’m rundown, and I’ll wait until the gastroparesis gets worse to get a new prescription. Dopamine antagonists can be risky for some. :woman_shrugging:
The 100 mg nightly and 75 mg daily of pregabalin helps keep the stomach cramps from being crippling. Although my hubby gets hella freaked out when they’re bad enough to cut through all that, and the pain is so bad that I can’t speak. I find that pepto bismol helps a lot in those times. But its been awhile since one of those episodes.

Gastroparesis is not only caused by diabetes. Yes, it can be, and may be in your case, but that’s no reason for your GI dr to stop looking for ways to help you. The vagus nerve takes its info from many parts of the body, and there may be more reasons that you have such a terrible time with it.

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I can’t remember if you suffer from low blood pressure due to gastroparesis, but if you do, keeping no sugar gatorade on hand is extremely helpful. I keep regular on hand as well if both bg and blood pressure are low.

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I have always had very low BP. generally i run about 90/50. My cardiologist has me on salt tablets and i drink tons of water to hydrate. funny you should ask.

Also, FYI, i still take Percocet for my spinal pain (as well as a muscle relaxer) and i know that the opioids really mess up your motility. Lately i’ve cut the dosage in half, and i am feeling a dramatic difference (for the better). I am in significant pain, but if i can survive the discomfort of the Gastroparesis, i feel like i can tolerate just about anything :wink: :crazy_face:

Thank you for getting bk to me with all of your helpful info. Its such a shame that there are not better solutions to such horrible health problems…particularly the ones that diminish ones way of life.

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