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Gastroparesis.

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

  1. ButtterflyLady

    ButtterflyLady Type 2 · Well-Known Member

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    I didn't "fault you for your opinion". I simply responded to some of the claims you made about a product. I acknowledged that you find it is bad for your body. That doesn't mean it is "unsafe" for everyone. I think you have misunderstood me, and the other poster who responded about it. That's fine.

    This article has some links to studies about aspartame, and covers what happened with Pepsi:
    https://www.sciencebasedmedicine.org/pepsi-removing-aspartame/
     
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  2. donnellysdogs

    donnellysdogs Type 1 · Master

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    Mmmmm.. I think I have caused aspartame anxiety here with mentioning it alongside the gastroparesis / slow colonic..

    Sorry @Anaelena...

    Could we possibly head back to the gastro??
     
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  3. Anaelena

    Anaelena Type 1 · Well-Known Member

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    That was what I was hoping for lol :) . Seems like some can't let it go .
     
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  4. Silvia_Rey

    Silvia_Rey Type 1 · Member

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    Hello Anaelena and donellysdogs. I'm soooo glad to know that I`m not alone :)... I have also a very severe gastroparesis and is making my life so miserable!!! I'm from Barcelona (Spain), but I live in Edinburgh now and I'm new in this Forum. So, please excuse my English!! Just wanted to say hello to everybody!!
    As late diabetic complications I have non-proliferative diabetic retinopathy, early diabetic nephropathy, severe polineuropathy with severe involvement of the autonomous system, orthostatic hypotension, neurogenic bladder and affectation of the gastrointestinal tract and my gastroparesis without response to erythromicin (and others). I had treatment with botulinum toxin with initial response but then didn't work and the second time. I was evaluated for a gastric elctroestimulator but they reject my case.... So, I guess I'm in the gastoparesis' club!!
     
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    #64 Silvia_Rey, Aug 5, 2015 at 3:12 PM
    Last edited by a moderator: Aug 5, 2015
  5. Anaelena

    Anaelena Type 1 · Well-Known Member

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    I am so sorry to hear about your complications as I also have many of the same ones and totally understand . Did they tell you why you were rejected for a gastric pacemaker ?
     
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  6. Silvia_Rey

    Silvia_Rey Type 1 · Member

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    Well, apparently the cuts on NHS and the fact that I had so many complications made the doctors think that it would be much better for another "healthier" person. I guess only for a patient with less complicated symptoms and only gastric problems. Sad but true!
     
  7. Anaelena

    Anaelena Type 1 · Well-Known Member

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    The irony in that does amaze me . With my gastroparesis it is so difficult to control my sugars . I also have a difficult time taking medications as they also aren't absorbed normally. With everything the Gastroparesis causes I do believe so many of my medication and control issues could be resolved if I had something to help . I wonder if you guys have the same feeling of fullness as I do . An example is I can eat in the morning and feel uncomfortableness until the evening enough so that I won't eat the rest of the day . Do you guys feel that too ? I know it is because it takes so long to push the food through I just wonder if everyone gets that . I had a test that showed my stomachs pumping action is basically nothing at this point so most I guess is just pushed through by gravity lol.
     
  8. Silvia_Rey

    Silvia_Rey Type 1 · Member

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    Yes! I feel the same as you do. In fact I can be without eating nothing for the rest of the day. The only smell of the food makes me sick and I really have serious problems to go the toilet. I go once a week! And if I have to go out with friends and have dinner... buffff is a nightmare
     
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  9. donnellysdogs

    donnellysdogs Type 1 · Master

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    I only eat one meal at night!! No hunger at all.
     
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  10. ButtterflyLady

    ButtterflyLady Type 2 · Well-Known Member

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    I have slow colonic transit, and my stomach can be a bit slow at times but it is not at the level of having gastroparesis, luckily. A while ago things were very slow indeed and my gastroenterologist gave me a script for Fleet enemas and told me to use one if I hadn't passed a bowel motion in 3 days. Gradually with medications I was able to go more often than that and things are ok now. I don't know if Fleet enemas would help you... but you might want to tell your doctor that you go once a week, and there might be medication or enemas that can help. Or, you might have already told them and they can't do anything to help, in which case I am sorry.
     
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  11. donnellysdogs

    donnellysdogs Type 1 · Master

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    This is what actually scares me about SCT... Does it then progress to Gastroparesis?
     
  12. ButtterflyLady

    ButtterflyLady Type 2 · Well-Known Member

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    I don't know, I haven't heard that but it's possible. I know that when my bowel is slow, my stomach does not function well. I get more reflux and I need to take domperidone more often to get my stomach working properly. A gastroenterologist once told me it's like a motorway system, if there's a bottleneck at one end, it makes the other part of the motorway slow too. On the positive side, I've had SLT for at least 20 years, and only been taking domeperidone for less than 2 years. So if there is progression, and it's only speculative, it seems pretty slow, at least in my case.
     
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  13. Silvia_Rey

    Silvia_Rey Type 1 · Member

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    Anaelena donnellysdogs CatLadyNZ I have read this thread from the beginning and I have gone through all the medicines you mentioned (except surgery). I even was on supplement drinks 4 times a day because I couldn't eat solids. I got fed up with them as well, so now I only eat what I can or what my stomach says "ok, I think I can handle this food"... I wake up in the morning I take my pills and inject my insulin then and have my coffee with semi-skimmed milk and that's me until 4 o 5pm when I have another coffee with a bit of bread, but if I still feel like a balloon I just wait until dinner when I can eat a soft, but at least decent meal. I feel very weak, my hair loss never ends (and I'm not surprised), I sleep a lot so I can recover from my low-activity during the day, and senna is the only remedy I have to go to the toilet after 6 or 7 days...
    Doctors said that they've done everything they could and told me to wait for surgery until I cannot cope with the situation. I've been into hospital sooo many times and sometimes for a month, and nothing can keep me stable. My blood glucose is never right or if it does it's just for one or two days. Been monitored with a blood glucose sensor three times during 15 days, and every single day I was absorbing my nutrients at different times.
    I guess an insulin pump would do me at least some good, but again the cuts and many people waiting for a pump!! I might buy one but they're expensive!!!
    Anyway, I just want to thank you for all your support and suggestions and PLEASE take care and don't let your SCT or your SLT get worse!! Severe gastroparesis is really a pain in the neck.
    Thank you all...
     
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  14. Brunneria

    Brunneria Other · Moderator
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    I had a friend, now deceased, who had problems with digestion along the lines of what you are describing.

    After several years of many other symptoms she eventually got a diagnosis of MS.

    I suppose i'm asking whether gastroparesis occurs in MS too? I suppose i should have googled this, rather than ask you all. Will do that now.

    Edited: Yes, it does. She had no idea and thought it was simply an elderly, worn out digestive tract.. I wish i had seen this thread 5 years ago. Her doctor just told her to take antacids.
     
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  15. Silvia_Rey

    Silvia_Rey Type 1 · Member

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    Well, this is sad...
     
  16. donnellysdogs

    donnellysdogs Type 1 · Master

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    @Silvia_Rey. Iam so sorry to hear that you are affected so badly....I so wish that I had a magic wand... I find it interesting that you have pretty much a soft evening meal.. My food is intentionally easily digestible and I've had so many people here questioning or telling me to eat more ir eat breakfast etc.. And I always say I have no hunger... But hadn't even questioned why I have no hunger or why I can't actually face food till evening.. But reading your living gives me more reasoning behind why I eat just once a day.. Its so hard to find the foods that slither through nicely in my stomach at other times or in addition to evening meals that are actually appealing enough to face. The extra foods at extra times- they may cause pain or discomfort beyond the nicety of actually eating and I don't want to face that. Thank you for relating your details as for the first time I realuse and can relate to why I eat the way I do.

    I find it interesting too for hair loss too. My nan (t2) had alopecia, my mum (avoided diabetes so far) but has really, really fine hair that you can see skin through and my hair has got thinner in the last year although Because its curly it looks thicker than it is. I see it coming out by literally the handful.
    I worried that this was a family trait (although brothes have the thickest black hair possible). Perhaps this isn't family trait but a little more i my case.
    My mum and nan were middle 70's before their hair probs. I'm early 50's.

    It has also made me think that this SCT is a complication to diabetes.. Although I have never thought of it that way at all. On this forum, I always say I'm complication free. Perhaps I'm not. I've just thought I'm the only person with SCT and the most horrendous impacted faeces that can occur. So never thought of it as a complication.

    Thank you so much for your detailed info. Its been really enlightening to me. As has this whole posting.

    Thankyou.
     
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  17. Silvia_Rey

    Silvia_Rey Type 1 · Member

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  18. Silvia_Rey

    Silvia_Rey Type 1 · Member

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    donnellysdogs Glad I could give you a tip for what's going on with your hair. But given the fact that our body does not absorb the nutrients as it should, it is normal that we are lacking in vitamins or minerals that are needed for our nails and hair to be healthy.
    I do take supplements of vitamins and minerals and that improves a bit to me, specially in my nails; they grow faster and stronger. Perhaps in you they would work better on your hair. Just the normal vitamins you get on the shops or pharmacies.
    I think is common sense that if you don't get all the nutrients our body needs daily, a good option is to take them as a supplement to our "poor" diet.

    Now, any suggestions while you go abroad on holidays? What do you take with you, or some ideas to enjoy the day as much as possible without having problems with a stomach looking like a balloon? ;-)))
    Thank you for everything. I really do appreciate it!!
     
  19. ButtterflyLady

    ButtterflyLady Type 2 · Well-Known Member

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    I really feel for you, living with this problem. I think the hair loss is probably due to not getting enough food or not getting certain vitamins and minerals. Supplements are a great idea. I have heard that fish oil can help with hair and nails but I the capsules might be hard to digest. Have you had blood tests to check for vitamin and mineral deficiencies? I doubt you are getting enough iron from your diet.

    If a gastric pacemaker and an insulin pump would help you, it might be worth fighting for them by writing to the specialists, or getting your GP to write to them. If they say no because of costs, maybe you could get your MP involved or go to the media?

    I take my hat off to you for being positive in the face of these issues, especially when you will be tired and low on energy because of them. Hugs.
     
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  20. ButtterflyLady

    ButtterflyLady Type 2 · Well-Known Member

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    In my case, SCT started decades before diabetes, so it can't be a complication of it in my case. Other family members have it too. We are used to talking amongst ourselves about our bowels, lol. It's not something most people like doing, understandably.

    I know a young woman with an eating disorder whose hair started coming out in handfuls because of her poor diet. So that would be the first thing I would look at. Your doctor should be able to help figure out what is causing the hair loss and what can be done about it, I would think?
     
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