GASTROPARESIS AND LACTOBACILLUS PROBIOTIC

I am not diabetic. the only medication i take is levothyroxine. i haven't eaten past 2 p.m for 2 years now - so i am used to it. I live alone so it doesn't bother me THAT MUCH but of course i can NEVER go out to eat dinner - ever. Restaurant meals are also "off the menu" since i can eat so little and it has to be earlier in the day - its just not worth "going off the program" because as you probably know - it takes several days to recover from a "dietary indiscretion" just not worth it. i have switched GI docs but there is nothing they can do - as you know Reglan has severe side effects that i am not willing to risk - i would rather make lifestyle changes than risk the side effects that the current medications for this condition have. it is what is is - it is just unfortunate that there is so little help out there and you have to figure it out yourself by trial and error. How long have you had GP for?

Hi, thought I'd chip in re: meds. In the US, a GI Dr can set you up to get dimperidone from Canada under a humanitarian exception. I hear that many clinics dont bother with it, but I was supposed to get it all going. Of course my GI Dr forgot. My three month follow up is 2 months past due and still hasn't been scheduled.

I've prescribed myself probiotics, but I don't know if it's worth it. Does it cause more or less pain?

I've been on an almost completely liquid diet with forays into soft food that always result in pain. I dont want to eat anymore. No matter what I injest, there is always pain.

I "eat" once or twice a day, well under 1000 calories a day (probably closer to 700 or so). Yet I am gaining weight. The GI doc's dietician blew my concerns off (she may not be the brightest bulb in the building - she seemed to know very little and basically handed me the GI diet protocol from a different institution. It's a diet built to help one develop diabetes. She said I shouldn't lose weight on a gastroparesis diet (it felt condescending to me and completely dismissed my concerns). My BMI is very high, and it all just results in mixed messages. Get gastric bypass surgery (a hard no), but don't diet,etc.

I have been fighting heart failure for 10 years, finally had a significant improvement in my heart (yay, since my mother and baby brother just dies from heart failure - we carry a gene in the family line.

Since gastroparesis often causes diabetes and heart failure due to malnutrition, I am scared. I've spoken to 4 or 5 registered dieticians (multiple sources), and have come out of it with no direction. Lots of contradictions.

I feel lost in the wilderness. I grow weaker by the week but I'm still fat, and I don't think I'm believed. I don't know what to do. When I look up gastroparesis mortality rates, they seem significant to me.

I live near Portland, Oregon. We have awful medical care here if your situation isn't easy. I've been turned down for care because I'm "top complex, which sounds worryingly close to "good luck with your slide into death."

Where do I find hope?

Thanks for listening.

Cheri

I take a low-dose Acidophilus-Lactobacillus capsule three times a day with a small meal and believe it has helped but I've heard others say it didn't help them so I guess it's an individual thing.

Gastroparesis can affect the whole body system but there doesn't seem to be a clear cause other than post-operative issues or diabetes (which affects the nerves including those in the GI tract and/or the vagus nerve.) But there are treatments for GP like diet management and short-term medication and many times they do help

I, too, experienced lousy follow-up and poor dietary advice after inpatient tests showed gastroparesis so had to research it myself with the help of my PCP and my nephrologist (I also have renal disease, diabetes, CHF, COPD, and other chronic conditions.)

I remember how scared I was when I couldn't eat and got so weak I couldn't function and landed in the ER about five times before they took it seriously and admitted me, gave me fluids and ran tests then put me on a clear liquid diet for a couple of days. The GI peeps followed up by handing me a diet which would have worsened my renal function and diabetes! No, thank you!

Too bad we have to be our own advocates when we feel ill and can't get appropriate medical help in a timely manner, if at all, but Google might be your best friend as long as you use trusted websites like the Cleveland Clinic or Mayo, etc.

Sending you healing thoughts and best wishes.

I have gasteroparesis and have it conquered by taking medication called Domperidone. Without it for 48 hours and I can’t function I get such pains in the stomach. I have been on it for over 20 years with no problems. I am not a diabetic and I have never had surgery other than endoscopy.

My dad used to say, "your a fool to be your own lawyer, and your own doctor." well, I'm not very good as my own lawyer, but after like 15 emergency docs, a dozen or more scans, tests, ultrasounds, five surgeons, four GI experts, etc. and they all missed what I kept telling them from day one...denied it, said it didn't exist, yet found and verified. I read all my own labs, all my own medical records, and don't just go and do one more CT scan, that will show nothing, when six have already been ran, and it's a waste of time and money...but the right surgeon, took his fingertips and put them in my tummy where I told everyone that I had a hernia, that "didn't exist" and he says, "oh, very rare, you have a spigelian hernia, gotta get that fixed, it can pinch your bowel..." no, really!? LOL ;o)

well, I don't know, but lacto, sounds like milk, and I was thinking, bad habit, that they are now doing fecal implants here in the USA, so I wonder, where do we get the good bacteria/probiotics in the first place? well, I find out, from our mother, happy mother's day to any and all! but how? my brother says, through breast milk, not in the womb, and if formula, just doesn't cut it, we get mom's good probiotic bacteria from our mothers..hmm, so breast milk? well, if I have SIBO, IBS and/or Chrohns, then...have my brother ship a poop down to me, in the mail and try a "fecal implant?' or breast milk, well, being an old man, I doubt that any young lactating female will help me, so I get's on ebay, ya know and type in "breast milk" and order a package of freeze dried breast milk for twenty bucks and free delivery...worth a try, right!? then I look it up on line, and the medical literature, in europe etc. they are trying this, with some success, breast milk, mom's gift to our GI!

Wow! Sounds like we've had similar experiences - medical care has gone to you-know-where in a handbasket, JMHO.

okay, breast milk, freeze dried, from this outfit, sprinkle it on almond milk, and take a lactaid first, and giving it a shot...probiotics; mother knows best!
https://naturallyinspirational.biz/

I used a tenz unit for my gastroparasis, but gotta be careful, cause if too high, it can aggravate IBS, and cause more spasms

As a Crohn's patient who at the time my sulfasalazine had stopped working (meant my colonic bacteria were "off") I did a lot of research on which bacterial benefitted our gut. I had a dr frience give me access to medical science papers and found one that had worked on that. Our biome is extremely varied, almost individual but there are a few consistencies. I found that Swanson Foods sells a produce called "Epic Pro" that has everything the paper referred to minus one species. So I bought it and have used it since. Just my opinion, of course, but seems to help.