Gastroparesis.

[Anaelena]

I have had Gastroparesis that has gotten worse in the last 5 years. I have bouts of not being able to eat any solids and severe vomiting . Here in the states our options for treatment are limited because of the FDA. They give gastric pacemakers on a very limited basis and for what they call a "compassionate" basis and the medicine I took for it at one time caused tics and uncontrollable tremors , I eventually had a small stroke and my neurologist thought it was possible caused by that medicine . My question is if anyone out there has severe gastroparesis and if so what kind of treatment are you using ? How do you control your vomiting and what do you eat/drink ? Thanks .

 

[mrspuddleduck]

Hi @Anaelena , I don't have, and to be honest don't know much about gastroparesis. I have pancreatic atrophy which has finally resulted in a calcification and necrosis of my pancreas. When I was first diagnosed I was unable to eat at all for months and was tube fed, then I had to learn to eat again with the support of TPN. The vomting in those days was horrendous and pretty much constant. I used to inject anti emetics and hope for the best! Biazzarely as my pancreas died off my ability to eat improved but I do have severe mal absorbsion so its a constant battle to retain the levels of nutrients, meds and insulin to keep me stable. The bloody meds have also taken their toll and have caused so many additional problems. I suppose I'm saying, cant help with your question but I really do have empathy with what you have to go through. Don't think I've come across anyone else on the forum with gastroparesis but there maybe someone here who you can have a better informed chat with. Suexxx

 

[Pipp]

Hello @Anaelena
I have had many abdominal surgical procedures, and have damage to the vagus nerve. Until a recent surgical procedure food became trapped in my upper intestine, causing pain and vomiting. Not the same as your condition, but I do sympathise. I found small regular meals helped, as did acupuncture and reflexology. They didn't help as much as the surgery though. I now have better gut motility, but do not get the sensation of hunger or saiety in my stomach. I only know I am hungry if I feel light headed. I never really know when I have eaten enough, so have to be aware that if the food tastes good I need to limit how much I eat.
Are any of the online support groups going to be a better source of information and support for you? Gastroparesis is an unusual condition and maybe a more specific forum would have better support?

 

[Mrs Vimes]

Oh my god that sounds like a living nightmare. Haven't got any advice on this just hope someone can come along and help soon. Must cause havoc with controlling blood sugars?
And you are expected to just crack on with your life dealing with that?

 

[Brunneria]

I will flag @donnellysdogs , because i believe she has some experience of this.

 

[AndBreathe]

On another forum, where I read, there seem to be two or three T1s with Gastroparesis. It does seem wholly unpleasant.

If you would like the name of the website, feel free to message me. I feel it could be viewed as disingenuous to post a competitor forum details on here.

 

[Anaelena]

Hi @Anaelena , I don't have, and to be honest don't know much about gastroparesis. I have pancreatic atrophy which has finally resulted in a calcification and necrosis of my pancreas. When I was first diagnosed I was unable to eat at all for months and was tube fed, then I had to learn to eat again with the support of TPN. The vomting in those days was horrendous and pretty much constant. I used to inject anti emetics and hope for the best! Biazzarely as my pancreas died off my ability to eat improved but I do have severe mal absorbsion so its a constant battle to retain the levels of nutrients, meds and insulin to keep me stable. The bloody meds have also taken their toll and have caused so many additional problems. I suppose I'm saying, cant help with your question but I really do have empathy with what you have to go through. Don't think I've come across anyone else on the forum with gastroparesis but there maybe someone here who you can have a better informed chat with. Suexxx

Thank you so much for your response . I am so sorry you have had to go through all of this and it is nice to hear from someone who can empathize . I also have mal absorption issues which makes things very unpredictable . I found that the anti vomiting meds make me so tired. Did or have you ever tried any homeopathic meds that helped you ? I do think ginger has helped a small amount . Thanks .

 

[Anaelena]

Hello @Anaelena
I have had many abdominal surgical procedures, and have damage to the vagus nerve. Until a recent surgical procedure food became trapped in my upper intestine, causing pain and vomiting. Not the same as your condition, but I do sympathise. I found small regular meals helped, as did acupuncture and reflexology. They didn't help as much as the surgery though. I now have better gut motility, but do not get the sensation of hunger or saiety in my stomach. I only know I am hungry if I feel light headed. I never really know when I have eaten enough, so have to be aware that if the food tastes good I need to limit how much I eat.
Are any of the online support groups going to be a better source of information and support for you? Gastroparesis is an unusual condition and maybe a more specific forum would have better support?

Most of the support I have found has been for people who have gastroparesis but without diabetes and that is significantly different for me because as we all know diabetes, eating , blood sugars and such make a difference . I also have found it seems to be much more common in a much older group than I , as well as more common in men . Not to say there is anything wrong with that but it is a bit different just because of our lifestyles .

I am interested in finding out how the acupuncture helped you . If you don't mind ?

My symptoms stared with eating in the mornings and not being able to eat again for at least 12 hours because I would get that feeling of being full along with nausea all day . I now have the same issue you describe with not feeling hungry at all . I am mostly on liquids now . With all of this can you believe I can't lose weight ? Lol .

 

[Anaelena]

Oh my god that sounds like a living nightmare. Haven't got any advice on this just hope someone can come along and help soon. Must cause havoc with controlling blood sugars?
And you are expected to just crack on with your life dealing with that?

It does make controlling my sugars almost impossible. Even my Drs have pretty much thrown up their hands on it . Lol

Funny thing is I never realized how much food is used not just for nutrients but how social and cultural it is . So many activities surround food . I think all diabetics can understand that but since I can't eat like normal I have noticed I am not invited to "functions" "lunch" as much . I don't think it is personal but people assume I am no longer interested since I can't eat .

 

[donnellysdogs]

Slow colonic transit.... Horrendous A&E visits and morphine etc. Discussion between me and gastro made me totally stop all bread, pasta, rice, celeriac and other foods...and also anything with gelatine or jelly. Have had discussions on how to stay free from 8 laxative products a day etc and found that 2 tablespoons of flax seed and chia seed on my fresh fruit salad each day keep my stomach working enough.. I too have had discussions on the electric stomach pacemakers and also bags...but so far SCT has not got worse...unless I stupidly forget to buy them!!

Due to aspartame, sweetener intolerance too and it appears preservatives I have quite restrictive foods but not in other ways.. I love my greek salads and fresh veg and (now) ouly fish or white fish etc. I live my fresh fruit salads. I love my spiralused courgettes etc. I can eat cheese if I wish, I have my 2 sq dark choc each day etc and lots of nuts.

I don't feel as if I miss out at all on anything to be honest.. I've just made my first home made soup etc.. I still have gorgeous pecan bites which are better than anything else mentioned. I get a stomach that works enough if I don't forget to buy the flaxseed. I get good balance of fats with some carbs and get my vitamins and minerals and calories but with a colon that can cope with the foods..

Flax seed is always ate with my one meal of the day... If I eat during day I will ensure that I split the flaxseed and have a tablespoon with whatever I may eat during the day.. Even if its stirring it in some water or milk etc. Chia and ground flax sed need water or liquids otherwise it can cause problems...

 

[donnellysdogs]

I too had chronic trouble controlling levels when stomach wasn't working properly. Horrendous highs for me as it seems that food was just fermenting into sugar in my body and it wan't moving anywhere!!!

My feiend after having cancer and also having his stomach problems from taking painkillers has also found that flax seed- just a tablespoon in his porridge (not diabetic) has stopped him having to use any laxatives that he was having to take...

 

[Anaelena]

Slow colonic transit.... Horrendous A&E visits and morphine etc. Discussion between me and gastro made me totally stop all bread, pasta, rice, celeriac and other foods...and also anything with gelatine or jelly. Have had discussions on how to stay free from 8 laxative products a day etc and found that 2 tablespoons of flax seed and chia seed on my fresh fruit salad each day keep my stomach working enough.. I too have had discussions on the electric stomach pacemakers and also bags...but so far SCT has not got worse...unless I stupidly forget to buy them!!

Due to aspartame, sweetener intolerance too and it appears preservatives I have quite restrictive foods but not in other ways.. I love my greek salads and fresh veg and (now) ouly fish or white fish etc. I live my fresh fruit salads. I love my spiralused courgettes etc. I can eat cheese if I wish, I have my 2 sq dark choc each day etc and lots of nuts.

I don't feel as if I miss out at all on anything to be honest.. I've just made my first home made soup etc.. I still have gorgeous pecan bites which are better than anything else mentioned. I get a stomach that works enough if I don't forget to buy the flaxseed. I get good balance of fats with some carbs and get my vitamins and minerals and calories but with a colon that can cope with the foods..

Flax seed is always ate with my one meal of the day... If I eat during day I will ensure that I split the flaxseed and have a tablespoon with whatever I may eat during the day.. Even if its stirring it in some water or milk etc. Chia and ground flax sed need water or liquids otherwise it can cause problems...

I love fruit but I have to blend it up now because I can't digest them anymore. I do love Greek salad as well and don't have too much trouble as long as it is only a few bites. I can't digest fiber either so I have started adding flax oil. spiralused courgettes ? I need to google that I stopped all artificial sweeteners because of the same reason . Sounds like we might be chemical twins. Lol

I stopped taking laxatives all together because just like my food they were unpredictably digested and would just sit in my stomach and cause me to look like a can of busted biscuits .

I am drinking about an ounce of flax oil a day . I hear it is good for women in general.

 

[donnellysdogs]

I love fruit but I have to blend it up now because I can't digest them anymore. I do love Greek salad as well and don't have too much trouble as long as it is only a few bites. I can't digest fiber either so I have started adding flax oil. spiralused courgettes ? I need to google that I stopped all artificial sweeteners because of the same reason . Sounds like we might be chemical twins. Lol

I stopped taking laxatives all together because just like my food they were unpredictably digested and would just sit in my stomach and cause me to look like a can of busted biscuits .

I am drinking about an ounce of flax oil a day . I hear it is good for women in general.

Anaelena it is so good to hear that someone else is so similar to me!! Your description of the laxatives and busted biscuits is absolutely identical to how I was...

We could be chemical twins. So true, its unbelievable. Although I can currently eat the fruit with a little apple and mango juice it was only a couple nights ago I googled to find out what to do if SCT gets worse and I had concluded I would blend the fruit.

It is very, very hard to manage and I don't think people truly really appreciate how hard it can be to try and find foods that will digest and without chemicals either.

I was taken to the Ritz in London for a surprise dinner a couple weeks ago. It was wonderful but my friend had to ask me whether it was going to have food that I could eat.. And I had to google the menu's etc first and take my flax and chia seeds with me and pretend that when she ate some apparatifs (can't spell) that I wasn't bothered.... Having to check everything before buying, going out for meals etc is not easy.

I was due to go and talk to the top chap in London ref my stomach and the electronic gadget but found out in time how to adjust my foods to enable stomach to keep some action.

Its tough. Even hypo stoppers now are pure sugar cubes and I used to love my sweets I had...

I was only advised about chemicals a few months ago when my Practice went thru my notes and found a note from a consultant that wan't advised to me or put on the system that he thought I was likely to have an intolerance to aspartame, sweeteners etc... This was in 2003. I was on full disability benefit a few years ago because of pain and inabilities.... So I thoroughly understand how difficult it all is-although I cannot actually give advice on the transmitter thing...

I know how tough it is and so understand how bloods can be affected etc and the busted biscuits belly!!!

 

[donnellysdogs]

Haven't tried flax oil... That may be a better alternative for me to try... Will find out availability in UK... Thanks for that info...

 

[Mrs Vimes]

Bloody hell and I thought life couldn't actually get more complicated!
I realised how much life revolved around food when I went lchf. But what you are both having to deal with I've actually got no words.
The fact that you both carry on living a life and discussing it as matter of fact - you have my respect. Blood sugar control is a full time job anyway but then having to take this into consideration - again just bloody hell!

 

[NinaB73]

Bloody hell and I thought life couldn't actually get more complicated!
I realised how much life revolved around food when I went lchf. But what you are both having to deal with I've actually got no words.
The fact that you both carry on living a life and discussing it as matter of fact - you have my respect. Blood sugar control is a full time job anyway but then having to take this into consideration - again just bloody hell!

My thoughts entirely!!

 

[Anaelena]

Haven't tried flax oil... That may be a better alternative for me to try... Will find out availability in UK... Thanks for that info...

It is actually not bad tasting , sort of nutty flavored . In other product I have found here is called Mag07. It is sold as a dietary supplement. It is not a laxative although it will most definitely help with that issue. It gives me no cramps at all and it is not something that your colon gets use to and therefore reliant on. It is basically using oxygen and works really well.


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I hope I won't get in trouble for posting pictures. I can remove them if needed .

 

[Anaelena]

Bloody hell and I thought life couldn't actually get more complicated!
I realised how much life revolved around food when I went lchf. But what you are both having to deal with I've actually got no words.
The fact that you both carry on living a life and discussing it as matter of fact - you have my respect. Blood sugar control is a full time job anyway but then having to take this into consideration - again just bloody hell!

Aww thank you for the support . I do hear a lot of "it could be worse" . I guess it can be ! ))

 

[donnellysdogs]

It is actually not bad tasting , sort of nutty flavored . In other product I have found here is called Mag07. It is sold as a dietary supplement. It is not a laxative although it will most definitely help with that issue. ItView attachment 14551 gives me no cramps at all and it is not something that your colon gets use to and therefore reliant on. It is basically using oxygen and works really well.


ATTACH=full]14548[/ATTACH]View attachment 14549View attachment 14550


I hope I won't get in trouble for posting pictures. I can remove them if needed .

Have saved pictures...just in case!!-lol Thank you Anaelena. Very informative and can now google easier!!

 

[donnellysdogs]

My thoughts entirely!!

Thank you both for your support... So very much appreciated....

I find it extremely hard at times to be honest. The majority of times I love my foods and I do enjoy so enjoy spiralising my courgettes and canbage etc but odd times it makes you feel different.

Going shopping you learn to avoid the bread and cake aisles or even better... You send your hubby!!! -lol.

I know Anaelena and I wouldn't wish this on our worst enemies. Certainly when I found out about the aspartame and pain I posted about it to warn others.

The gastroparesis and SCT is horrible but we I think try to be positive that we try to and have found natural products that can assist us. Like Analaena I do not use any laxatives as 8 movicols or laxidos a day didn't help or the horrible mini enemas either.. So we have bith had to find natural products.

For me personally it has been great to hear of another person with similar problems- thanks Anaelena for your post. Its good to learn of flax oil and that I'm not the only one with probs...