Speak to me, my Gastroparesis friends!!!

[Francelle]

Is anybody out there??? It's well past the middle of the night (3am) and I'm in relative agony with my almost worst symptom of M.E. - Gastroparesis. I'm usually so circumspect and only have liquid 'foods' but tonight I slipped up and ate something cakey.

Does anyone have any quick, easy remedies? I've taken an extra Domperidone. It's a bit late to go for a walk even if I felt I could.

 

[ukxmrv]

Sorry to hear that Francelle,

My quick fixes are

1. Betaine HCL
2. Charcoal tablets
3. Aloe vera juice

and if I have none of these or it doesn't work

4. lie back on bed flat and massge my stomach, starting from the top right hand size and working around under my ribcage to the left and then down and then across and up again to the start - repeat until it gets better

Hope it clears up soon

 

[CBS]

Is anybody out there??? It's well past the middle of the night (3am) and I'm in relative agony with my almost worst symptom of M.E. - Gastroparesis. I'm usually so circumspect and only have liquid 'foods' but tonight I slipped up and ate something cakey.

Does anyone have any quick, easy remedies? I've taken an extra Domperidone. It's a bit late to go for a walk even if I felt I could.

If you're having gas and belching, I've found simethecone to provide some (often significant) measure of relief.

Here are the brand names:

Alka-Seltzer Gas Relief Maximum Strength Softgels
Flatulex Drops
GasAid Maximum Strength Softgels
Gas-X
Genasyme
Maalox Anti-Gas Regular Strength
Mylanta Gas Relief
Mylicon Infant's Drops
Phazyme Infant Drops
Phazyme-166 Maximum Strength Softgels


I get Genasyme from behind the pharmacy counter. It is a generic that is 25% the cost of Gas-X.


NOT fun! Hang in there!

 

[judderwocky]

Is anybody out there??? It's well past the middle of the night (3am) and I'm in relative agony with my almost worst symptom of M.E. - Gastroparesis. I'm usually so circumspect and only have liquid 'foods' but tonight I slipped up and ate something cakey.

Does anyone have any quick, easy remedies? I've taken an extra Domperidone. It's a bit late to go for a walk even if I felt I could.

I have had a lot of morning sickness issues i have found out were related to parasites... might be worth looking into

 

[Francelle]

Thanks guys for your responses. I did reply yesterday but my msg obviously floated off into cyberspace!

Wondering ukxmrv, how much Aloe Vera that you would use and how does it help extremely delayed gastric motility?

 

[ukxmrv]

Thanks Francelle,

I can take half a glass of aloe vera juice. It seems to "push" the un-digested food through my gut quicker.

It's much less foul as well when it comes out the other end - probably TMI but I hope you know what I mean....

 

[Francelle]

How long does the Aloe Vera take to work? I am thinking of adding it to my emergency first aid supplies for Gastroparesis. Does it taste yucky and do you dilute it?

Sorry for all the qu's ukxmrv but do you have diagnosed Gastroparesis?

 

[ukxmrv]

Yes, a CFS doctor diagnosed in in 2001. I'm been working on these quick fixes since then. It takes hours for the Aloe Vera to work for me but it is better than suffering for days. I need to be very careful about brands as many cause a burning sensation or make me feel poisoned. The one I have in the fridge right now is "Lifestream". I'm used to taking yukky things so don't notice the taste (just swallow it quickly)

 

[Sunday]

You might try Swedish Bitters. In this country, mostly the brand is NatureWorks. It's an old recipe, popularized by Maria Treben, and it's specifically geared to digestion, liver, and microcirculation. (It's also great applied topically, including as a compress for painful internal organs.) I just went to a dr. who for a miracle actually knows something of CFS and she pointed out that I could be doing more for my gut. The store that sold her recommendations was closed, but i remembered Swedish Bitters, which I have used a lot in the past. You could start with very small amounts, like 1/2 teaspoon, in water. If you tend that way, it may give you a bit of the runs, but ever so worth it for the pain relief. And by the way I find it works fairly quickly, within in an hour or even less.

 

[Francelle]

Thanks Sunday! I have heard of the merits of Swedish Bitters so will do some research on it!

 

[Jenny]

Since I started Culturelle, a probiotic, my constipation's been much better. Could be co-incidence though - it comes and goes anyway.

Jenny

 

[ukxmrv]

Jenny, I found Gastroparesis to be different to constipation in my case. Mine is a delayed stomach emptying so I had to use things to try and force the food through. It was delayed rather than constipated. Sadly, probiotics had no effect on the stomach emptying time for me. However I find probiotics useful for other things and it's good to know of an efficient one.

We are all different though and probably others will comment on their different experiences. I'm really glad that you found something that worked for you!

 

[Jenny]

Jenny, I found Gastroparesis to be different to constipation in my case. Mine is a delayed stomach emptying so I had to use things to try and force the food through. It was delayed rather than constipated. Sadly, probiotics had no effect on the stomach emptying time for me. However I find probiotics useful for other things and it's good to know of an efficient one.

We are all different though and probably others will comment on their different experiences. I'm really glad that you found something that worked for you!

Yes, thanks for emphasising the distinction ukxmrv but I know of a few people who've found their gastroparesis improves when they deal with the constipation.

Jenny

 

[ukxmrv]

Thanks Jenny, I imagine that it would and thanks for bringing that up!

 

[Francelle]

Jenny, my Gastroenterologist also has told me that helping the constipation (which is also due to delayed GI motility) helps the Gastroparesis (GP), in some people. Sadly tho’ as ukxmrv has found, I too have found that it makes little difference in my case. However in this condition one does need to keep ahead of the constipation for lots of other reasons – lol!

While I’m here again, I wanted to ask how many of you with GP have oesophageal paralysis, either partial or complete? Three years ago when I was very unwell, before I was diagnosed with M.E./Fibro/GP etc I saw a Neurologist. At that appointment I outlined all my symptoms and mentioned that I was having difficulty swallowing. She looked down my throat and got me to say ahh! After a few blood tests she had the gall to write back to my General Practitioner to say that I was probably developing a somatisation disorder!!! Grrr.

Sometime after that a GI surgeon ordered an oesophageal manometry test and a GES (Gastric Emptying Scintigraphy) and diagnosed the GP and paralysed oesophagus. What a relief to get onto a correct regimen for these distressing symptoms.

 

[kesser]

Gastroparesis remedies

I was first diagnosed with it back in 2005. It was not that severe. In fact, I was surprised to learn, that considerably slowed motility was such an issue. I got treated with Zelnorm for a while, before FDA took it off the shelves. Afterward, for almost 5 years, it has not been an issue. But about two months ago it came back with vengeance. I am at loss of what to do. Metoclopramide, that was prescribed to me by my GI happened to cause drowsiness, fatigue, dizziness and other perhaps dopamine related symptoms. What else could be done? Is there something, that attempts to correct the pathophysiology of ME/CFIDS, that causes gastroparesis in the first place? Has anyone been tested for pituitary dysfunction as a root cause of gastroparesis?

 

[Francelle]

To Kesser

Hello Kesser,

To answer your last question first, no I havent been tested for pituitary dysfunction as a cause of Gastroparesis (GP). What is the rationale for such enlighten me? Pit tumours perhaps? Or Evidence of hypothalamic dysfunction, a key part of the brain that regulates a number of body functions including temperature control; hormonal output, in particular the production of cortisol from the adrenal glands (Papanicolaou et al, 2004); and the autonomic nervous system (Freeman, 2002).

The pathophysiological connection of M.E. and GP seems to involve, as Im sure you already know, damage to the autonomic nervous system. In the case of GP this may be to the Vagus Nerve or as has been more recently found, to the ICCs Interstitial Cells of Cajal. Not sure which one is more likely in M.E. The other autonomic abnormalities of M.E. are more well known like, orthostatic intolerance. I guess the only thing I can think of to correct this pathophysiology would be to correct M.E itself. This would be a dream! Perhaps ARVs may be the answer but whether they would correct damage to the nerves supplying the stomach would be anyones guess!

Last year not long after being diagnosed with GP I went to a lecture run by Prof. Kenny De Meirlier and he mentioned Gastroparesis as being associated with M.E. I nearly fell off my seat as I hadnt heard of any connection at that stage. Everyone talks about IBS but not GP in M.E. yet I have since come across quite a few M.E people with various degrees of gastric dysmotility. As I havent got my notes with me at present Ill just post this link: http://www.prohealth.com/library/showarticle.cfm?id=8489&t=CFIDS_FM

In Australia Domperidone is available on prescription. I find this very effective in virtually eliminating 24/7 nausea but does not allow me to eat anything (apart from a few prawns & sm. spoonful of white rice) therefore I am on a liquid diet only. I did try Cisapride (Prepulsid) after obtaining the necessary government approval but it did not help me anymore than the Domperidone did. Considering the cost of Cisapride and the rigmarole involved in obtaining it, I gave up and went back onto the Domperidone. Reglan (Metoclopramide) seems to be used here more for vertigo and dizziness, not GP or at least none of my Gastroenterologists treating me for GP have ever suggested Reglan..