Down to either bile reflux or gastroparesis

Posted by bborth @bborth, Jun 24, 2019

To say I am desperate is an understatement. I've posted here a few times in the past on both these topics in regard to my status currently. Things have been slowly getting worse since this past December, and I really don't have a plan to fix it. My GI surgeon is at a loss, because he said my symptoms and test results narrow it down to these. He says roux en Y surgery will do more harm than good, as I will likely lose 25-30 pounds and may never get that back (?). I have lost 14 pounds in the past few months due to no appetite and the fullness one feels after a small amount of food. Plus the constant nausea to some level adds up to not wanting to eat. But I ask you out there for some advice. I just went for a run (this is therapy for me, and lets me clear my mind from all that I am going through) tonight, and vomited bile when I was done. I vomit a couple times a week now, which has never happened to me in all the time I have dealt with GI issues post gallbladder removal. Clearly I have a dysfunction. GI suggested botox to keep the valve open at the bottom of the stomach….but if I have bile reflux, that will open this up to a worse situation with more bile flowing into the stomach. So, he referred me to the Mayo GI clinic but I can't get in until early september. In sum, my constant symptoms are swollen feeling on the R side, more acute where the gallbladder was, burning/stinging in the stomach, packed in feeling after small portions of food. And, pain that now requires oxycodone at times to abate (again, never had to go to this measure before). Not sure what to do, or if I am at risk for more harm by waiting that long. But then again, I don't want to have a surgery that will forever harm me. Thoughts??

@bborth

I won't go into all the details, but have had serious digestive issues for the past 6 months that are very challenging. I am without a gallbladder, and suspect shpincter of oddi ever since this was removed 5 years ago. My GP wonders if I have this even though my study came out normal. Metroclopramide is the only medication that has given me relief, but sadly I had to discontinue after 6 weeks due to side effects I brought up in an earlier post. I always feel like food gets stuck and doesn't flow through me like it should. The cement feeling in my stomach and discomfort really wear on me. So….has anyone taken domperidone at all whcih is a motility drug but safer than M? Stuck as in I can't take the M but it was the only really effective medication for me so far.

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Hi @bborth that must be so confusing for you and your doctor.

I wanted to tag @mayorocks @spaceboy60 and @peggyella have all mentioned domperidone in the past and may be able to share their experience or research on this medication.

Back to you @bborth, what other treatment options are you are your doctor thinking about?

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@bborth

I won't go into all the details, but have had serious digestive issues for the past 6 months that are very challenging. I am without a gallbladder, and suspect shpincter of oddi ever since this was removed 5 years ago. My GP wonders if I have this even though my study came out normal. Metroclopramide is the only medication that has given me relief, but sadly I had to discontinue after 6 weeks due to side effects I brought up in an earlier post. I always feel like food gets stuck and doesn't flow through me like it should. The cement feeling in my stomach and discomfort really wear on me. So….has anyone taken domperidone at all whcih is a motility drug but safer than M? Stuck as in I can't take the M but it was the only really effective medication for me so far.

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At this point I have tried all medications except for domperidone, and the only surgical option from what I have been told is Roux En Y. My GI surgeon seemed to offer that as a very last resort, as he mentioned some possible serious life long adjustments/risks that I would have to consider. Which is why I really would like to hear from others who have had this what their experience was, and is months/years later. The ability to go out and have a normal meal again, and not worry about the possible consequences must be nice. Being 56 years old it is hard to fathom living another 20 odd years this way and not take a risk at some point to gain back normalcy if that is at all possible. Hopefully I will get some responses here, thanks!

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@bborth

I won't go into all the details, but have had serious digestive issues for the past 6 months that are very challenging. I am without a gallbladder, and suspect shpincter of oddi ever since this was removed 5 years ago. My GP wonders if I have this even though my study came out normal. Metroclopramide is the only medication that has given me relief, but sadly I had to discontinue after 6 weeks due to side effects I brought up in an earlier post. I always feel like food gets stuck and doesn't flow through me like it should. The cement feeling in my stomach and discomfort really wear on me. So….has anyone taken domperidone at all whcih is a motility drug but safer than M? Stuck as in I can't take the M but it was the only really effective medication for me so far.

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I take Domperidone, it was the only way I could eat solid food for years but now it doesn't seem to work as well. Moved to a liquid diet this week due to several vomiting episodes per day burning my esophagus to the point it effected my ability to speak without pain.

Liked by ajstaley

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@dotdash

I take Domperidone, it was the only way I could eat solid food for years but now it doesn't seem to work as well. Moved to a liquid diet this week due to several vomiting episodes per day burning my esophagus to the point it effected my ability to speak without pain.

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what dosage are you taking, and how much improvement do you think it had? I am still waiting for the medication to get mailed to me from a Canadian pharmacy. Sure hope it helps some.

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@bborth

I won't go into all the details, but have had serious digestive issues for the past 6 months that are very challenging. I am without a gallbladder, and suspect shpincter of oddi ever since this was removed 5 years ago. My GP wonders if I have this even though my study came out normal. Metroclopramide is the only medication that has given me relief, but sadly I had to discontinue after 6 weeks due to side effects I brought up in an earlier post. I always feel like food gets stuck and doesn't flow through me like it should. The cement feeling in my stomach and discomfort really wear on me. So….has anyone taken domperidone at all whcih is a motility drug but safer than M? Stuck as in I can't take the M but it was the only really effective medication for me so far.

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Well, I tried the domperidone for 2 days last week. I actually came down with a fever and felt chilled as if I had a virus. Not sure how that all came about, but obviously a deal breaker. Really bummed out because Reglan worked for me but again had too nasty of side effects. Am now exploring the role of the vagus nerve with my feeling of slow digestion. Have had 2 emptying studies, one 3 years ago was slow, the other one a few months ago normal. Which is why I ask about the validity of this test given my symptoms a tailor made for gastroparesis. I have had 2 whiplash concussions in my life, and all my gut problems started after my first one 19 years ago. Prior to that, nothing. Makes me wonder.

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@bborth I have had my gallbladder out, have mild gastroparesis, achalasia, Barret’s esophagus and esophageal spasms.. I had a roux n y surgery (gastric bypass) to repair a paraesophageal (sliding) hernia. I have dealt with reflux for many, many years. The hernia would not stay repaired and this surgery was last that might repair it. It is what the surgery was originally meant for… weight loss was a side effect. My journey is briefly stated in one of my blog post: https://zarogasnook.blogspot.com/2015/08/a-long-time-passing.html .. my blog does not have ads. It is only a bit of what I have and am going through.

I had a feeding tube for a little over a year (because of complications after one of the surgeries.. 1% chance of it happening and I am always the oddball) and after having the tube removed I lost weight. It is hard for me to maintain weight. Mostly because of the swallowing problems. I had that problem before the g-bypass. There is more chance of pancreatitis after a g-bypass. I have not have that. I had the surgery in 2013. I have chest pain all the time, but because of one of the complications they had to repair to do with my diaphragm and lung and not the bypass. My other conditions also can cause chest pain. I am not fond of opiates/narcotics, but take a low dose of oxycodone for pain. I do not have the bile reflux anymore. I do have phlegm that contains stomach acid that comes into my throat. It does not burn like the bile reflux. I still take prilosec for this because of the Barrett's. The surgery does not seem to help gastropareses.

If I were you I would keep the appointment at the Mayo and you might want to call and ask if they have a list you can be put on in case someone cancels an appointment. They will usually work with you on a date.. they try and get test and doctor appointments as close as they can together. Give them all test results ahead of time.. and cd of any radiology test so they can see the films. Your doctor or hospital may can fax or mail them to the Mayo. Our hospital was suppose to have mailed the Mayo a cd, but with a phone call to check on it to the Mayo we found they had not. We got a copy ourselves and mailed it to the Mayo.. we asked for a signature that they had gotten it. Yes, keep check on anything that is suppose to be sent.. miscommunications and things do get lost.

Keep a food/activity diary to keep track of what triggers your symptoms. It can be helpful in diagnosing. Make a list of questions.. I like to make a copy for the doctor and one for me to write notes on. Computers come in handy for this. Take someone with you to your appointments. Two sets of ears are better than one and can be helpful in thinking of more questions to ask during the appointment that are not on your list. Also makes good company in waiting areas. Waiting time for anything is usually not long.

The g-bypass was my last resort. At the Mayo Clinic in Jacksonville my surgeon, Dr Bowers was excellent. He is a great planner… explains the choices and draws pictures of what he plans to do. He tells what to expect afterward. The side effect of weight loss is a bit hard if you are skinny.. I was asked to gain as much weight as I could before surgery. It was not easy to gain five pounds over about 6 weeks. The feeding tube kept me around 140 pounds. 4 years after having feeding tube removed I am around 120 pounds. My greatest loss was last year of 15 pounds.. the other pounds were very slowly lost. I cannot eat more that about a cup of food at a time.. just get too full. So I eat often. If I cannot maintain it over the next year they say I might have to go back to feeding tube. For many they can gain weight because the pouch will expand. After the division of the stomach one side of the stomach is the remnant and the other is the pouch. The pouch become the stomach. My feeding tube went into the remnant and I could still eat some foods by mouth which went into the pouch.

If you are having diarrhea because of the gallbladder removal I would suggest a probiotic. I tried many that did not help. Align is the only one that helps me. I tried products that say compare to Align… or contained the word Super. They just do not have the magic ingredient for me. Limit fried or greasy foods and sweets or any known triggers. Everyone is different in their triggers.

Best wishes,
Zaroga

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I won't go into all the details, but have had serious digestive issues for the past 6 months that are very challenging. I am without a gallbladder, and suspect shpincter of oddi ever since this was removed 5 years ago. My GP wonders if I have this even though my study came out normal. Metroclopramide is the only medication that has given me relief, but sadly I had to discontinue after 6 weeks due to side effects I brought up in an earlier post. I always feel like food gets stuck and doesn't flow through me like it should. The cement feeling in my stomach and discomfort really wear on me. So….has anyone taken domperidone at all whcih is a motility drug but safer than M? Stuck as in I can't take the M but it was the only really effective medication for me so far.

Liked by ajstaley

REPLY
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