Gastroparesis.

Silvia_Rey

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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.
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.

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
 
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Silvia_Rey

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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?
Yes! you're absolutely right!!
 

donnellysdogs

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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!! :)
 
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ButtterflyLady

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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!! :)
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.
 
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donnellysdogs

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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.

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.
 
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ButtterflyLady

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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.
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.
 
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Anaelena

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Yes! you're absolutely right!!
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
 
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Anaelena

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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.


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 .
 
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Indy51

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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
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.
 
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Anaelena

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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...

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.
 
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ButtterflyLady

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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.
 
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Pipp

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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.
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.
 
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Anaelena

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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.


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

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That is a great suggestion !!! I will try to find a way of contacting them , I didn't even consider this . Thank you !!!
@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
 
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donnellysdogs

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@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.
 

ButtterflyLady

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@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.
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.
 

donnellysdogs

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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!!
 

Indy51

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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:

 
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ButtterflyLady

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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.
 

Anaelena

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@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.

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 .