International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Opioids and Gastroparesis

Discussion in 'Gastrointestinal and Urinary' started by Otaykj, May 12, 2018.

  1. Otaykj

    Otaykj

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    I'm a new member and this is my first post. I've been on Hydrocodone since 2012. I have been suffering from nausea for years. In the last year it has gotten unbearable. Nausea medicines don't work at all. The nausea is intermixed with much pain in the stomach and gut. Last week I had a gastric emptying test and they said my test showed slowed gastric emptying. I started researching and I feel that the hydrocodone could be part, or all of the reason. Is this quite common for us with ME/CFS because of our dependency to pain meds. When I went on pain meds it changed my life, but now I think the opioids have made me even more pain sensitive along with the damage to my GI tract.

    My gastric problems are getting worse by the day. I walk the floors till it's time for me to take my next pain pill. All my other pains pale in comparison to the GI pain and nausea going on right now. I made an appointment with a pain clinic so I can get off the opioids, but I don't have an appointment for another 11 days. Has anyone tried the Gastroparesis diet?

    https://www.gicare.com/diets/gastroparesis-diet/
    It is a 3 stage diet. Stage 1 I started today out of desperation - liquids only. I have an appointment with my gastroenterologist next Tuesday. I also had severe pancreatitis in 2014 & I don't know the extent of the damage. I can't take digestive enzymes. Thanks for any help you can give me...........
     
    Last edited by a moderator: May 12, 2018
  2. Runner5

    Runner5 Senior Member

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    PNW
    ((hugs)) That sounds brutal. Sending you some good vibes, I hope you find some answers and soon.
     
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  3. mariovitali

    mariovitali Senior Member

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    @Otaykj

    Some questions :

    -Have you checked your Gallbladder with Ultrasound?
    -Do you have Fatty Liver Disease (NAFLD)?
    -What is the problem in taking Digestive Enzymes?
    -What kind of supplements are you taking?
    -Do you tolerate fatty foods?
     
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  4. kangaSue

    kangaSue Senior Member

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  5. Otaykj

    Otaykj

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    In 2014 my gallbladder passed a stone that got stuck in the common bile duct. It lead to severe pancreatitis. My gall bladder was removed 10 days later. The Dr put me on digestive enzymes - caused nausea and vomiting. I tried them again a couple of months ago and well I didn't moment this time I was so nauseous I couldn't get out of bed and I could not I couldn't find any nausea medicine including intravenous Phenergan that would work on the nausea.
     
  6. Otaykj

    Otaykj

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    I had liver biopsy. It showed negative for fatty liver disease although all of my MRIs and CAT scans and ultrasounds throughout the years indicated that I did have fatty liver . My ALT and AST numbers go up and down, although they are never alarmingly high. The doctor that performed the liver biopsy thought that my fluctuating ALT AFT numbers were caused by some of my autoimmune problems.

    I have not eaten fatty foods since I had pancreatitis in 2014. Having pancreatitis made me very aware of everything that I ate. My biggest fear was that I would get it again. Five Inc. more fast into my life in the last year or so. I can't say that I can tolerate them because I'm nauseous 24 x 7. I wasn't able to tolerate PPI's after my endoscopy in January. I didn't know what was causing all of my problems. I was on the medication pantoprazole for six weeks. As soon as I went off it I started to get slowly better it took about six weeks

    I am sensitive to most all medications that I have tried. I have a suitcase full of prescriptions that have been prescribed to me that I was only able to take for a few days.
    Supplements include, magnesium, vitamin D 3, calcium, milk whistle, vitamin C and a multivitamin. I just ordered Pep Sin GI. I've been waiting for my appointment next Tuesday with the gastroenterologist to discuss the 3 tests she ordered. An exray of my small intestine, a gastric emptying test, which I already know shows that I have slowed gastric emptying and lastly a SIBO (small intestinal bacteria overload)

    That might be the case
    Thanks for responding.........
     
    Last edited by a moderator: May 13, 2018
  7. Otaykj

    Otaykj

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    Narcotic bowel syndrome could possibly be the cause . I what's on high doses of morphine and OxyContin while I was in the hospital after having pancreatitis in 2014 . I would imagine it was soon after that my GI problem began to surface. I have an appointment to go to the pain clinic in 11 days . I am on Vicodin 7.50/325 no more than five pills per day. I don't think that that dosage is an excessively high dose. It does work on my gastric pain so until I go to the pain clinic I'm going to continue taking them. I hope they can find a strong enough pain medicine to replace the Vicodin that I've been taking since 2012.
     
  8. mariovitali

    mariovitali Senior Member

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    Many of the Symptoms you described pointed out towards Gallbladder issues therefore my questions.

    I've been trying for the past 3 years to have Researchers look at my Hypothesis (which actually others before me have discussed) : That a significant number of ME/CFS Patients have/had Liver/Gallbladder issues and that these problems set the stage for ME/CFS. Even some medications can do this (hypothesis).

    Full list here : https://docs.google.com/spreadsheets/d/1CLtqxW0-L8f25ZXD2H6FFDVbggc73GGC8KtYNkjdUBo/edit?usp=sharing

    Since i am not a Doctor please do not take the following as any sort of suggestions on what to do or not do. What i believe is that you got into this situation because of your Cholecystectomy and then subsequent avoidance of fats.

    I now move on to the fact that you take Vicodin. It appears that Vicodin may cause Hepatotoxicity. Since you have performed a Liver biopsy, do you know from how many sites the biopsy was made? I suspect it was only one. This is problematic because the needle may take a sample from a non-problematic area, therefore we need biopsy from multiple sites (which is obviously not easy).

    My next question would be if you ever took Ox Bile and if yes how did you feel?
     
  9. Otaykj

    Otaykj

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    In 2014 my gallbladder passed a stone that got stuck in the common bile duct. It lead to severe pancreatitis. My gall bladder was removed 10 days later. The Dr put me on digestive enzymes - caused nausea and vomiting. I tried them again a couple of months ago and well I didn't moment this time I was so nauseous I couldn't get out of bed and I could not I couldn't find any nausea medicine including intravenous Phenergan that would work on the nausea.
     
  10. Otaykj

    Otaykj

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    • I'm working on my Kindle and it's very cumbersome. I must've hit a button button that posted my reply before I was done writing it and/or editing it
    • Liver biopsy was taken on only one site
    • I have never taken ox bile. I have found that if the medication/supplements side effects list nausea and vomiting, I can pretty much count on that being the case, but with me the nausea is debilitating
    • Very interesting hypothesis. It makes sense. I'm feeling desperate and I don't like that feeling. I can get rid of these bullets either! Guess I better get my laptop .
    • Thanks for taking the time to respond to my post .
     
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  11. Otaykj

    Otaykj

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    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!
     
  12. Otaykj

    Otaykj

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    I apologize for all the typos I need to get off this Kindle !!!
     
  13. Otaykj

    Otaykj

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    Have you thought about a possible pancreatic connection along with the liver and gallbladder?
     
  14. mariovitali

    mariovitali Senior Member

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    Absolutely. This is a snapshot from the 32-page Document i sent in October 2017 :

    Screen Shot 2018-05-14 at 06.24.00.png
     
  15. Otaykj

    Otaykj

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    This is most interesting. I read the entire snapshot from above and if I was to read your entire paper I'm sure I would find more correlations. In my early 30's, at a time when I was less than 110 pounds and very active, I had the cholesterol levels of a 60 -year-old. Before I had pancreatitis in 2014, my triglycerides were too high to calculate my doctor assured me that I would have a stroke within the next 10 years. Still on a low-fat diet my cholesterol numbers started to climb again but it was impossible for me to maintain less than 10 mg of fat per day. For as long as I can remember dating back to the 1990s my ALT AST numbers have been sporadic. In my early to mid 20's I had a period of time where my gastric problems were part of my daily life and then one day the problems just stopped; until they resurfaced again last year. Although I've always considered myself healthy I kept active and healthy in spite of the emotional trauma (another day, another story) in my life, I considered myself happy. This year I made an appointment with a young to discuss my illness. I presented to him that in the Denver metro area there are no doctors who specialize in ME/CFS. I asked him if he would like to be my doctor and learn from my experience and possibly specialize in this cluster of Mystery illnesses that consist of ME/CfFS. To make a long story short he informed me he did not want to work with a drug addict and if I was here to see him about writing me a prescription, I could be assured that it was not going to happen. I closed my notebook and told him not to bill my insurance company and walked out. Despite all of my neurological issues, i can't get a neurologist to even take a serious look at me. I would very much like to read more of what you have written. Thank you for sharing and replying to my post. It has been truly amazing to have people actually show interest in what I have to say.
     
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  16. mariovitali

    mariovitali Senior Member

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    Thank you,

    The thing is that since 2015 i've been sending imformation to Researchers which -as it turned out- was later found to be true (Pyruvate Dehydrogenase complex, Bile Acid Metabolism, Phospholipids, possible Liver involvement).

    I begin to feel at loss here for not having even one Researcher saying "ok let's see this hypothesis more seriously".

    The paper poses a number of questions which are very easy to look at. I am reallly dissapointed to be honest.
     
  17. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Did you mean Pepzin GI? I can't live without this. I've been taking it for several years.

    Digestive enzymes I can't live without
    https://www.amazon.com/dp/B017TE580G

    A small dose of ox bile helps me a lot with constipation:
    https://www.amazon.com/dp/B003GHA5GS

    I sip diluted prune juice throughout the day, which also helps.

    My constipation and gastroparesis are mostly due to opioids and to a smaller extent, hypothyroidism.
     
    Last edited: May 14, 2018
  18. Otaykj

    Otaykj

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    Yes, I did mean Pepsin GI. I was typing from memory. I will start taking them in the next day or so. I might try some very small doses of digestive enzymes and the ox bile as well. Very small doses - I buy empty vegetable capsules for that purpose. Thank you so much for replying to my post. kj
     
  19. kangaSue

    kangaSue Senior Member

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    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.
     
  20. Wayne

    Wayne Senior Member

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    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

     

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