Opioids and Gastroparesis

[Otaykj]

Hi @Otaykj,

I'm sorry to hear about the many difficulties you're going through. -- It always concerns me when I hear of someone overly avoiding fatty foods. You know your situation far better than me, but you might want consider slowly experimenting with some foods that contain some good fats, such as avacado, chia seeds,coconut oil, etc. If you started very slowly, I can't help but think you'd be surprised by what you can tolerate. And if you can, I think it could be very helpful for you absorbing a number of nutrients that are fat soluble.

You might also want to consider adding some bitters to help with your digestion. And perhaps consider doing some vagus nerve stimulation as well. HERE is a link to a 10-min video I thought was particularly good, which talks about bitters and vagus nerve stimulation. He also mentions coffee enemas, which he feels are the best way to stimulate the vagus nerve. In my years of experience doing CEs, it's my number one therapy for helping me control my own pain syndromes, which have been quite severe at times..

So much to sort out! I hope you can find some really effective solutions for yourself.

All the Best, Wayne​

Thank you Wayne you're right. I have been introducing fat back into my diet until recently because of my gastroparesis. It's unfortunate the way this works isn't it? Seems like one quits hurting and then something else pops up the next day. Was making my own liposomal vitamin C with sunflower lecithin, which is a very good fat for your brain, adding avocados to my salads every night and making snacks with peanut butter and oatmeal, etc. Thank you for your kind words.kj

 

[Otaykj]

I took a look at your introductory bio. I think it's more likely from having your autoimmune conditions that autonomic dysfunction is a greater piece of your puzzle rather than Narcotic Bowel Syndrome and if I were in your shoes, would be looking to do both autonomic function testing and further antibody testing for a reason for your GI dysmotility in case it's autoimmune dysmotility too.

Mayo has a blood test panel (DYS1) for Autoimmune Dysmotility that would be worth doing to rule out some enteric autoantobodies known to cause GI dysmotility too. A Heart Rate Variability to Deep Breathing Test as a measure of your vagus nerve functioning would also be worth doing.

Regarding pancreatic (digestive) enzymes, I don't tolerate any of the o.t.c. supplement types but had no issue with taking Creon capsules, prescribed for fat malabsorption in having gastroparesis rather than EPI.

Do you have to go to the Mayo Clinic to get the DYS1 test? What kind of doctor do you go to for these tests. Heart rate

 

[Otaykj]

Do you have to go to the Mayo Clinic to get the DYS1 test? What kind of doctor do you go to for these tests. Heart rate

 

[Otaykj]

I'm having a hard time working on my small hand held devise. I inadvertently send my post before I'm done typing it. I guess it's time to take my laptop to my bedroom. I will try Creon. Thank you so much for you insight. I very much appreciate it. kj

 

[Misfit Toy]

Otaykj-I just wanted to tell you, my friend was just in the hospital with pancreatitis and they found she has gastroparesis. She was on opium. So, she has to only have liquids or things from a blender. The Vitamix makes everything pureed. That is what she uses. You can get fat from soup. Can you make soup with chicken? Give the chicken part to someone else? They advised her to have all things milk. yogurt, milk, etc.

IF I were you, I would go onto a gastroparesis page on FB because there you can find all of the info you need. I have sjogrens and lots of people have gastro. There are pages specifically for this disease on FB.

She just made a sweet potato into a pureed food. I know how difficult this is. She is losing her mind right now.

 

[Otaykj]

I'm so sorry to hear about your friends bout with pancreatitis. That was a horrible period in my life. Did you mean NOT to have all things milk? Rather than "her to have all things milk......" The nausea started after I had pancreatitis. I had a cat scan done when I went to the ER on Monday and they found a mass (they can't determine whether it runs along side of the pancreas or is attached). I honestly think that it's from all the blisters cause when the pancreatic enzymes ate away at the lining of my pancreas and the blisters have emptied (thank goodness they didn't break, or it would have thrown me right back into a pancreatic attack). I waited 2 days to go to the hospital. Bad call on my part, for sure. So, I'm not that worried, yet. My MRI is on Wednesday. I'll keep you posted so I can share the info with you for your friend.
I shall go to the Facebook page tonight. Good idea on the sweet potato - they are so good for you. I've lost a drastic amount of weight - I'm starting to worry.
Thank you so much and good luck to your friend. It's a slow recovery.

 

[kangaSue]

Do you have to go to the Mayo Clinic to get the DYS1 test? What kind of doctor do you go to for these tests. Heart rate

Mayo accepts blood samples from a lot of outside countries for antibody testing and I assume it's the same from within America too.
A Heart Rate Variability to Deep Breathing Test is a fairly standard one often done as part of an Autonomic Function Test Panel and usually the domain oc Neurologists or Cardiologists but some general Physicians may have a machine capable of doing just the heart rate variability test.
http://www.vitalscan.com/dtr_ans.htm

 

[kangaSue]

The nausea started after I had pancreatitis. I had a cat scan done when I went to the ER on Monday and they found a mass

Did they happen to mention that this was signs of having an annular pancreas? This can compress the duodenum to mimics SMA (superior mesentery artery) Syndrome, the flow on of which can be nausea, vomiting and/or gastroparesis.
A Barium Swallow with Small Bowel Follow Through would likely reveal a duodenal narrowing if this is the case.

 

[kangaSue]

I just wanted to tell you, my friend was just in the hospital with pancreatitis and they found she has gastroparesis. She was on opium.

@Misfit Toy There might be something of interest to your friend in this paper about opium use and abdominal pain.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4062278/

 

[Misfit Toy]

NOT to have all things milk? Rather than "her to have all things milk......"

If you can believe it, they are telling her to have milk. Is that even normal?

 

[Otaykj]

If you can believe it, they are telling her to have milk. Is that even normal?

Yes I can believe it! It's been so confusing to me because in one place I will read no dairy, no gluten yet when I go to the medically approved gastroparesis diet that I found on the Internet, it says in the stage three part of the diet to eat all forms of dairy as long as they're low fat dairy, low-fat yogurt, low-fat cheeses, skim milk etc. So, that's what I've been doing. And since I'm always nauseous anyway, I've just been going along with what the gastroparesis diet guidelines. I was glad to hear you reconfirm that about the dairy.

Today, I went to the dispensary and got some CBD oil capsules. I read yesterday that CBD oil has been known to help dramatically with gastroparesis. Although I quit marijuana quite a while back because it seemed to make me more nauseous rather than less nauseous, but the gal there today told me about a new strain that is known to help with nausea. I tried it which I don't usually like to do during the day and I have to say it did help. She told me the ingredients but the only one I remember was pepper. I did a lot of research yesterday on the Vegas nerve and vagus nerve stimulation. I think I'll start a new thread in the next day or so on it. Just a blabbermouth right now. Thank you so much for your info. As always, very much appreciated!!

 

[Otaykj]

Did they happen to mention that this was signs of having an annular pancreas? This can compress the duodenum to mimics SMA (superior mesentery artery) Syndrome, the flow on of which can be nausea, vomiting and/or gastroparesis.
A Barium Swallow with Small Bowel Follow Through would likely reveal a duodenal narrowing if this is the case.

I had a barium swallow, which they said was normal and I will have to research what a small bowel follow-through is. It's possible that I have it, but I doubt it. I have an MRI on Wednesday which should show quite a bit about my intestine as well as the pancreas, which is why they ordered the MRI; actually it's an MRCP. When I get the results of the MRI from my gastroenterologist I will ask her about what you brought up. Thank you so much for your post to my thread, I plan on adding it to my notebook. Take care and have a great week!

 

[sb4]

@Otaykj I also had 2 different barium swallows that came back normal, only when I did the meal test did I get a positive result.

 

[kangaSue]

I had a barium swallow, which they said was normal and I will have to research what a small bowel follow-through is.

The follow through part doesn't matter then if you've already had a barium test done. They just check from this that motility throughout the small bowel is normal too.

I have an MRI on Wednesday which should show quite a bit about my intestine as well as the pancreas, which is why they ordered the MRI; actually it's an MRCP

I think an MRCP is only looking at the gallbladder, biliary ducts and pancreatic duct. It could be more help if it included an MRA just to rule out any other abdominal vascular abnormality that can result in gastroparesis too.

Although I quit marijuana quite a while back because it seemed to make me more nauseous rather than less nauseous, but the gal there today told me about a new strain that is known to help with nausea.

A little known thing that can help with nausea is to (gently) sniff isopropyl antiseptic wipes.

I did a lot of research yesterday on the Vegas nerve and vagus nerve stimulation. I think I'll start a new thread in the next day or so on it.

See this thread http://forums.phoenixrising.me/inde...carbonate-may-treat-autoimmune-disease.58958/

 

[Nanni]

I read the article on the link that you sent me about narcotic bowel syndrome.you're right I do present well without diagnosis . I can only hope that my new pain specialist will be open minded about this. I was very open with them when I made the appointment that I felt that opioids played a major factor in my debilitating G.I. issues.

There is so much information and support on this website that it's overwhelming. Thanks again!

Hi just want to say I know how you feel. Sounds a lot like my story. I’m so distracted by the gut discomfort I can’t even get through reading all the posts. Harder to read and process when like this. I’m sure that I would feel better if I stuck to a healing the gut program., no sugar or the usual naughty list. And I’m trying to cut back on my dosage of my fentyl patch. My first pain doctor kept raising my dose and thought I would level off. But you never stop adjusting to a tolerance level. So he said to reduce very slowly but staying true to the plan. I’m cutting back 5% right now and I’m feeling it but it’s manageable. I’ll stay on this dose until I can adjust, a month maybe. I’m going to get massage and I’m looking into food delivery for the next month to get me going. I be been without a gallbladder for 7years and just learned about taking added acid to my diet. I’m sure it’s important and necessary and my stomach lining is probably very thin. Even adding a small amount of hcl has been too much for me. I’m not sure what do do about that. I took one brand of ox bile that helped, Biotics. I’m taking Vital. Maybe I’ve changed but this brand irritates. Also bubbly drinks are a huge trigger for my gastroparesis? I’m not sure why. I never drink anything but water except celebrations I might have a glass of champagne. Not every time but usually even seltzer hurts. It’s very difficult being nauseous and dealing with gut pain. I feel for you.

 

[Otaykj]

Hi just want to say I know how you feel. Sounds a lot like my story. I’m so distracted by the gut discomfort I can’t even get through reading all the posts. Harder to read and process when like this. I’m sure that I would feel better if I stuck to a healing the gut program., no sugar or the usual naughty list. And I’m trying to cut back on my dosage of my fentyl patch. My first pain doctor kept raising my dose and thought I would level off. But you never stop adjusting to a tolerance level. So he said to reduce very slowly but staying true to the plan. I’m cutting back 5% right now and I’m feeling it but it’s manageable. I’ll stay on this dose until I can adjust, a month maybe. I’m going to get massage and I’m looking into food delivery for the next month to get me going. I be been without a gallbladder for 7years and just learned about taking added acid to my diet. I’m sure it’s important and necessary and my stomach lining is probably very thin. Even adding a small amount of hcl has been too much for me. I’m not sure what do do about that. I took one brand of ox bile that helped, Biotics. I’m taking Vital. Maybe I’ve changed but this brand irritates. Also bubbly drinks are a huge trigger for my gastroparesis? I’m not sure why. I never drink anything but water except celebrations I might have a glass of champagne. Not every time but usually even seltzer hurts. It’s very difficult being nauseous and dealing with gut pain. I feel for you.

I have to share this with you. I had to do the diet. The 3 stage diet. I start stage 1 - liquids for a few days and try to ease into stage 2, but I've had to settle on halfway between stage 1 and stage 2. But for the 1st time since I had pancreatitis & my gallbladder removed in 2014 I woke up Tuesday without nausea. A little bit yesterday, but none again today. I had an appt with gastro - they referred me to the UC Health Research Hospital gastric department. I'm going to see gastro and neuro for the brain/gut correlation. I will keep you posted. BTW you know how it goes, when one thing starts to subside a bit, something else takes it's place. I have Barretts esophagus and woke up yesterday feeling like I had a marble stuck in my adams apple. I think it's the white bread from stage 2. I don't know tho. Thanks for your post. kj

 

[Otaykj]

Hi just want to say I know how you feel. Sounds a lot like my story. I’m so distracted by the gut discomfort I can’t even get through reading all the posts. Harder to read and process when like this. I’m sure that I would feel better if I stuck to a healing the gut program., no sugar or the usual naughty list. And I’m trying to cut back on my dosage of my fentyl patch. My first pain doctor kept raising my dose and thought I would level off. But you never stop adjusting to a tolerance level. So he said to reduce very slowly but staying true to the plan. I’m cutting back 5% right now and I’m feeling it but it’s manageable. I’ll stay on this dose until I can adjust, a month maybe. I’m going to get massage and I’m looking into food delivery for the next month to get me going. I be been without a gallbladder for 7years and just learned about taking added acid to my diet. I’m sure it’s important and necessary and my stomach lining is probably very thin. Even adding a small amount of hcl has been too much for me. I’m not sure what do do about that. I took one brand of ox bile that helped, Biotics. I’m taking Vital. Maybe I’ve changed but this brand irritates. Also bubbly drinks are a huge trigger for my gastroparesis? I’m not sure why. I never drink anything but water except celebrations I might have a glass of champagne. Not every time but usually even seltzer hurts. It’s very difficult being nauseous and dealing with gut pain. I feel for you.

Another thing - pain doctor does not think my gastroparesis is a result of opioid use. I've been pretty steady taking less than 30 mg . a day. I've had numerous documented neuro events since 2005 and my immune systems has gone crazy before where all my auto immune bloodwork has been all over the place. I've gotten past a lot of that, but my nervous system is SHOT with a capital S. I'm so sorry to hear about your pain - try the diet. I've been on it for over 2 weeks. I'm losing weight, but I'm really trying to keep an eye on it. Soon I'll be back on the doctor roller coaster ride again...……….

 

[kangaSue]

I've had severe gastroparesis (GP) for the best part of 20 years now and complicated by having Chronic Mesenteric Ischemia (CMI) for the last 13 years. Epigastric abdominal pain after eating is from the ischemia issue ( a microvascular bowel blood flow problem so not visible on imaging) and a nitrate vasodilator med helps a lot with this although the pain intensity had crept back up on me again over the last 3 years and I was at a loss as to what to do for it when I just recently discovered that taking sodium bicarbonate and apple cider vinegar together has significantly reduced the abdominal pain.

I have tried both of these before (and HCL for that matter) but only separately and didn't tolerate either one that way but the 2 combined together aren't a problem. I take this 3 times a day, one hour before food and the abdominal pain relief was actually only a bonus as this was a remedy I came across for gastric reflux, something for which this is very effective for me too.

I think the reason why it works has a lot to do with activating the cholinergic anti-inflammatory pathway as per the PR thread I linked to above.

 

[Nanni]

I have to share this with you. I had to do the diet. The 3 stage diet. I start stage 1 - liquids for a few days and try to ease into stage 2, but I've had to settle on halfway between stage 1 and stage 2. But for the 1st time since I had pancreatitis & my gallbladder removed in 2014 I woke up Tuesday without nausea. A little bit yesterday, but none again today. I had an appt with gastro - they referred me to the UC Health Research Hospital gastric department. I'm going to see gastro and neuro for the brain/gut correlation. I will keep you posted. BTW you know how it goes, when one thing starts to subside a bit, something else takes it's place. I have Barretts esophagus and woke up yesterday feeling like I had a marble stuck in my adams apple. I think it's the white bread from stage 2. I don't know tho. Thanks for your post. kj

I’m dealing with a new stomach problem that I’ve had since taking Movantik a month ago. I had the most extreme reaction. Very very bad stomach pain. I am guessing resulting in inflammation, damage to my stomach lining. I’ve only had yogurt and light food but I need more guidance. Could you give me a better idea of the diet you mentioned. If it’s in the thread I am sorry to ask about it. Not doing great. Btw someone told me to try vaping marijuana. It’s not the same as smoking exactly. I’m guessing any smoke can be irritating for some gut stuff. I had irritable bowel in my 20’s and smoking pot helped like magic.

 

[Otaykj]

Nanni,
Here is the link.
https://www.gicare.com/diets/gastroparesis-diet/

I am sorry to hear of your recent problems. It seems like its something new every day! I have found the Gastroparesis Diet on many web sites. Basically, it has 3 stages. After the initial few days of liquids only in stage one, I tried to venture into stage two. I wasn't able to do everything in stage 2. I ate a banana for b-fast, active/yogurt for lunch, chicken noodle soup w/ white crackers and Kroger frozen yogurt for dinner. An occasional 1/2 graham cracker. If I strayed from that routine, I would pay. It worked miracles as far as nausea and pain go and I think it allowed my stomach to heal a bit, BUT, this is the big one.

I'm losing a lot of weight and after a while my poop (sorry) started to get lighter and lighter in color and one day it was white. This is from not getting enough fat. Your liver needs fat to produce bile. I've slowly started adding GOOD fats back into my diet; ie: small portions of salmon, avocado, low fat string cheese & low fat protein bars. The best protein bars I've found (for me) are called Pure Protein Bar. I have to get the Strawberry Greek Yogurt Coating. No chocolate, nuts, etc. I've been able to try more foods, but there is a price to pay. I think that by giving my stomach a break, I've been able to tolerate more.

Be careful that you don't lose sight of how important vitamin c is. You can get yourself into trouble by not getting enough. I drink apple juice/coconut water, Pedialyte every day. The apple juice and coconut water cause grief to my tongue and sometimes just need a break from it. It goes away overnight, but some days I don't want to deal with the pain.

I have my medical marijuana card and did smoke for quite a few years for nausea until the nausea got so bad that nothing, and I mean nothing worked on it. I used to eat edibles at night for a great nights sleep, but it started to irritate my stomach and for some reason I started feeling paranoid unless I got the perfect dose, which is close to impossible. I've got some CBD capsules - I can't say it helped, but it would have cost me around $350 a month to buy as much as I needed to take.

I have my long awaited appointment with my new Gastroenterologist on Wednesday. My other GI doc was worthless. She got me diagnosed with GP, but that's about all. She only ordered a 1 hour test & now I'll have to go have the standard 4 hour test. I don't know what this GI doc will offer me as far as options; we'll see. I've got my hopes up and I shouldn't do that. At the very least, I probably need a feeding tube or IV nutrition right now.

Nanni, please feel free to contact me with any questions or if all you need is someone to talk to.

Kath