1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2021 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
  4. Guest, stay home, stay safe, save the NHS. Stay up to date with information about keeping yourself and people around you safe here and GOV.UK: Coronavirus (COVID-19). Think you have symptoms? NHS 111 service is available here.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Gastroparesis.

Discussion in 'Other Health Conditions and Diabetes' started by Anaelena, Aug 1, 2015.

  1. Silvia_Rey

    Silvia_Rey Type 1 · Member

    Messages:
    9
    Likes Received:
    15
    Trophy Points:
    43
    Thank you very much!! CatLadyNZ
    I thought that once... but I felt so tired and weak that I postponed my "little war" against NHS and politicians!! But, maybe it's about time that I get involved with my own goal!! Thanks for the encouragement, sometimes you need someone to tell you the right words to click your mind!!
    Hugs from windy and rainy Edinburgh, Scotland.
    Good night, I'm falling asleep! xxx
     
    • Like Like x 3
  2. Silvia_Rey

    Silvia_Rey Type 1 · Member

    Messages:
    9
    Likes Received:
    15
    Trophy Points:
    43
    Yes! you're absolutely right!!
     
  3. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,204
    Likes Received:
    12,464
    Trophy Points:
    298
    Gosh.. I take vitamin extras.. My step sis sent over vit tablets from spain for me as well cos they helped her during all her cancer treatment for her hair. I know my levels for D
    Is top level. I know I eat incredibly good, fresh all inclusive vits each day as I check the foods I eat are totally balanced for vits n minerals. Guess it may be genes in my case!!

    Interesting again though that Catlady SCT started before diabetes- that gives me a little bit of comfort that I can still say complication free.... I too have a mom that talks bowels lol!! Even hubby does now!! :)
     
    • Like Like x 4
  4. ButtterflyLady

    ButtterflyLady Type 2 · Well-Known Member

    Messages:
    3,291
    Likes Received:
    4,026
    Trophy Points:
    178
    I wouldn't rule out vitamin/mineral deficiency until I'd had blood tests, and also asked the doctor specifically about hair loss causes. The vitamins you take might not be high enough in dosage of certain things, or your body might not be able to absorb some of them very well. For example, there is a condition some people have where they cannot absorb B12, and need to get it by injection. There is a blood test for this condition.
     
    • Like Like x 2
  5. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,204
    Likes Received:
    12,464
    Trophy Points:
    298
    I have B12 taken every 6 months. It was a third higher than the highest level should be 11 months ago and was giving concern. My vit D again is at highest recordable level.
    All the rest like folate, iron etc are all normal. I was dianoses with Pernicious Anemia and having injections 15 years ago. These were stoped about 5 years ago but levels jumped way out of target range last year and now are slowly going down again.

    I am ultra careful with minerals and vitamins. My food is very balanced too.
     
    • Like Like x 3
  6. ButtterflyLady

    ButtterflyLady Type 2 · Well-Known Member

    Messages:
    3,291
    Likes Received:
    4,026
    Trophy Points:
    178
    Good to hear.

    BTW, did you find the injections painful? I hated getting them. In fact I don't get them anymore because of the sting. Oral B12 seems to be ok for me.
     
    • Like Like x 2
  7. Anaelena

    Anaelena Type 1 · Well-Known Member

    Messages:
    196
    Likes Received:
    496
    Trophy Points:
    103
    I have the same issue with the restroom. I can go 12 days without using it . A lot of people can't understand that laxatives won't work because they just sit in your stomach and cause cramping and bloating and nothing else and enemas don't help because that is not where the problem for us is. Even my other medications I am taking I have a difficult time taking because everything takes so long to digest . A lot of people , even doctors don't understand this complication very well . My GI dr told me if I can travel outside of USA for treatment he would recommend it . I have been to turkey and they have some excellent medical facilities as well as the gastric pacemaker . I am still considering getting one there but need to see who in the states can follow up with me . I am tired of liquids , feeding tubes , vomiting and weakness. It is the one issue that causes me the most misery and the most issues with blood sugar control
     
    • Like Like x 4
  8. Anaelena

    Anaelena Type 1 · Well-Known Member

    Messages:
    196
    Likes Received:
    496
    Trophy Points:
    103

    We need to be. As we both have had higher levels than normal . My iron I low but taking supplements and vitamins is different with us and can have an effect on our kidneys .
     
    • Like Like x 4
  9. Indy51

    Indy51 Type 2 · Expert

    Messages:
    5,543
    Likes Received:
    6,348
    Trophy Points:
    178
    Have you thought of contacting Dr Bernstein's office? I believe he's in NY State or Connecticut. His office may be able to make a recommendation to a physician closer to you.
     
    • Like Like x 6
  10. Anaelena

    Anaelena Type 1 · Well-Known Member

    Messages:
    196
    Likes Received:
    496
    Trophy Points:
    103
    The pump has helped me . I have had it 18 years now . I don't have to eat if I can't. We have the same type of issues. No more solids I drink mostly all my meals now . Basically the nerves are shot.
     
    • Like Like x 2
  11. ButtterflyLady

    ButtterflyLady Type 2 · Well-Known Member

    Messages:
    3,291
    Likes Received:
    4,026
    Trophy Points:
    178
    I just remembered a procedure my gastroenterologist told me about that I could have for my SCT. I didn't do it, but I think it's a good option if things are bad enough.

    It's called the ACE procedure, anterograde continent enema, which involves surgery to place a port in the abdomen that connects at the start of the large intestine. Then the person uses a bag of saline (I think) to connect to the port and slowly go into the bowel over 40 minutes or so, and then the contents of the bowel are passed. They do this every few days. I think this would work if the blockage was mainly in the large bowel, but if the stomach contents/material was slow in even getting to the large bowel then I don't think it would help much.

    Just something to think about, if it's of use to anyone.
     
    • Like Like x 4
  12. Pipp

    Pipp Type 2 · Expert
    Retired Moderator

    Messages:
    7,944
    Likes Received:
    13,245
    Trophy Points:
    198
    Excellent idea, @Indy51
    The information you gave in post #23 of this thread was the most useful I have had about any of my health conditions. The Bernstein info would be my go to reference for any future abdominal problems connected to my vagus nerve damage. Particularly the abdominal exercise.
    Thank you.
     
    • Like Like x 5
  13. Anaelena

    Anaelena Type 1 · Well-Known Member

    Messages:
    196
    Likes Received:
    496
    Trophy Points:
    103

    That is a great suggestion !!! I will try to find a way of contacting them , I didn't even consider this . Thank you !!!
     
    • Like Like x 2
  14. Pipp

    Pipp Type 2 · Expert
    Retired Moderator

    Messages:
    7,944
    Likes Received:
    13,245
    Trophy Points:
    198
    @Anaelena dr Bernstein's contact details are with the very comprehensive list of links already provided by @Indy51.
    There is even an opportunity to register for a web seminar in a few weeks time.
    I hope you will have the opportunity to participate if you wish to. It could be that you find a solution.
    Good luck and best wishes.
    Pipp
     
    • Like Like x 2
  15. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,204
    Likes Received:
    12,464
    Trophy Points:
    298
    @CatLadyNZ and @Anaelena

    Do either of you have trouble with a full size hot meal? I obviously know that you do if you know what I mean... But did either of you get to a point that hot meals suddenly caused you probs?

    I tried having just belly rashers by themselves last week as I love them. They caused horrible distention again and high levels up to 15 hours later.

    Last night I had home made meatballs and home made sauce (with courgette) and cabbage and runner beans and exactly the same again. At at 5pm. At 11.30 I was still in 5.0's, then at 1am I woke up eeally sweating.. Stomach so badly distended. Tested and was 11.7!! Then I doubled correction insulin dose. Woke up again exactly same at 5am. Still 11.3.. Same diatention, same pain.
    Finally got down to 6.5 by 9am.

    I thiught it was courgette, but even when I had belly rashers last week just by themselves I had the same problem.

    5 days a week I eat salads and fish or eggs or a bowl of soup. No problems.

    I don't want to keep having to go through pain and high levels making myself ill (as it seems intentional!!) but don't know whether I should just avoid full hot meals.
     
  16. ButtterflyLady

    ButtterflyLady Type 2 · Well-Known Member

    Messages:
    3,291
    Likes Received:
    4,026
    Trophy Points:
    178
    Hi there, I'm not sure what is causing that problem. Maybe the cabbage had something to do with the distension, as I know that can cause wind in some people? Sorry I can't be of more help.
     
  17. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,204
    Likes Received:
    12,464
    Trophy Points:
    298
    Thanks.. The discomfort has continued all day... No wind or trapped wind. Stomach is hard and bloated. Normally it goes ultra lean when. Lie down but is totally rounded and hard.. No gurgling noises either. I guess this may be a warning that problems again can be expected in the next few days.

    Just don't know why it's Sunday's or hot meals. Or appears to be!!
     
  18. Indy51

    Indy51 Type 2 · Expert

    Messages:
    5,543
    Likes Received:
    6,348
    Trophy Points:
    178
    Have just checked back on Dr Bernstein's Youtube channel for the first time in a while to discover he's made a video about Gastroparesis now:

     
    • Like Like x 2
  19. ButtterflyLady

    ButtterflyLady Type 2 · Well-Known Member

    Messages:
    3,291
    Likes Received:
    4,026
    Trophy Points:
    178
    Thanks for the video, @Indy51 . He gives good advice about the different testing methods for gastroparesis. I've never been tested for it - my doctor just suggested domperidone for my GERD symptoms. Who knows, maybe if I was tested I would test positive for it? Because the med certainly works. And my stomach symptoms come and go, just like Bernstein referred to... if I have a meal that feels heavy afterwards and my GERD is playing up, then I start taking domperidone before meals and I feel much better. Also, I didn't know ondansetron could be used for delayed gastric emptying. That might be helpful for people who can't get domperidone. I've found it very effective for nausea. By comparison, metaclopramide does nothing, in my experience.
     
  20. Anaelena

    Anaelena Type 1 · Well-Known Member

    Messages:
    196
    Likes Received:
    496
    Trophy Points:
    103
    At this point I cannot eat anything without having all the mentioned symptoms . I can't eat solids all that much . I do prefer cool foods though I guess mostly because they tend to be foods that are easier on me . Fiber , seeds most solid fruits are a no go .
     
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook