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hello all!

GI issues appear to be one of my biggest autonomic issues and have been for a while now. I know Ive posted on this before. but im incredibly frustrated, as i feel just horrible, I'd say about 90% of the time when I eat or drink ANYTHING I get sick from it )ie nausea ,vomitting, and or diarhea) allmost instantly.

Its like the moment food or water go into my mouth, that is all it takes to set me off. Ive tried diet changes, doing liquid diets, when symtpoms are so severe that solid foods arent even worth trying giving the issues it causes....cutting out meats, cutting out fatty stuff.. watching the sugar/carb intake. I cant seem to win no matter what i try.

my stand by meds dont even thouch the symptoms anymore...

So far testing has come back normal, so this adds to the frustration...

I have days where immediately upon standing i throw up, this past weekend I atempted to go to the grocery store, and i got so sick in the store, with horrible gut pain, and this sensation that my stomach was turning inside out, intense nasuea, and inevitably diarrhea. Complete with chills, goosbumps, facial flushing, muscle/legs weakness, and uncontrolled shaking.

I bought my water and left....and spent the rest of the night feeling yucky..( no i didnt have the flu..i just get like that)

Do any of you get such a sudden onset like this? have you found anything that helps you???

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Your symptoms sound a lot like what happens to me right before I get near syncope. Have you checked to see what is going on with your BP and HR when this is happening? I mainly get orthostatic hypertension and high heart rate when I'm up right, but right before I drop I will get very ill, sweaty, ringing ears, nausea. Dr. Grubb has put me on labetalol, it's a alpha beta. It has made a huge difference in my erractic BP/HR. I was on clonidine and it was like my body kept wanting higher and higher doses and I felt awful on it. Proprananol gave me higher BP. Not knowing what is happening with your hr and BP and not knowing what tests you've had makes it hard to give you advice. I have been having gastro problems and will be getting part of my colon out. My digestion has been better too since cutting out most dairy. I'm going to get food allergy testing after the surgery. Have you been tested for food allergies or mast cell disorder yet

hello all!

GI issues appear to be one of my biggest autonomic issues and have been for a while now. I know Ive posted on this before. but im incredibly frustrated, as i feel just horrible, I'd say about 90% of the time when I eat or drink ANYTHING I get sick from it )ie nausea ,vomitting, and or diarhea) allmost instantly.

Its like the moment food or water go into my mouth, that is all it takes to set me off. Ive tried diet changes, doing liquid diets, when symtpoms are so severe that solid foods arent even worth trying giving the issues it causes....cutting out meats, cutting out fatty stuff.. watching the sugar/carb intake. I cant seem to win no matter what i try.

my stand by meds dont even thouch the symptoms anymore...

So far testing has come back normal, so this adds to the frustration...

I have days where immediately upon standing i throw up, this past weekend I atempted to go to the grocery store, and i got so sick in the store, with horrible gut pain, and this sensation that my stomach was turning inside out, intense nasuea, and inevitably diarrhea. Complete with chills, goosbumps, facial flushing, muscle/legs weakness, and uncontrolled shaking.

I bought my water and left....and spent the rest of the night feeling yucky..( no i didnt have the flu..i just get like that)

Do any of you get such a sudden onset like this? have you found anything that helps you???

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AG,

Do you mind me asking why they have to remove part of your colon? I have a lot of colon difficulties, also.

Thanks,

Jana

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AG,

Do you mind me asking why they have to remove part of your colon? I have a lot of colon difficulties, also.

Thanks,

Jana

Hi Jana,

Well it appears to be diverticular disease to make it short. The longer story is that I had been having a lot abdominal pain and bloating. Had a full work up 2 years ago everything looked good, told had a colon of a 30 year old, only had an iffy hida scan, told it was IBS or short for "it's bull ****" we don't know what's wrong. Choose not to get gallbladder out and follow-up hida was normal. Then I was in a high speed freeway accident oct 07, got seat belt injuries. Then the symptoms over the next 9 months got really bad to the point I was pooing burning yelllow bile that looked like pee, my intestines just were painful sour. Then my colon would shut done and nothing would move. Then last august after another episode my colon popped while trying to go to the bathroom. I could feel the air moving back and forth trying to get out and then pop. I ended up in the hospital on IV antibiotics and only by some miracle avoided emergent surgery. The last year has been spent trying to figure out the autonomic stuff, so if I needed surgery, I would survive it. It's been flairing up on and off for the last year. Oh and after the rupture when I reviewed my medical records my primary care doctors office never informed me that I had an elevated WBC or that Diverticulosis showed up on the CT two weeks after the accident. So I basically had an infection in my colon for nine months.

Most recent I was having low grade fevers again, had my white blood count checked and it was elevated. They did another CT and that along with the pain and other symptoms, showed I was having another attack. So, after one rupture and another attack, it is too risky to leave that section of my sigmoid colon in, because it could pop again at any time. I've had too courses of antibiotics already this month. I do feel better on the right antibiotic, can't take the cipro or levequin, they caused terrible body pain, and shouldn't be taken if you have the autoimmune autonomic neuropathy that I have.

So what are your symptoms and have you been worked up for diverticular disease?

Honestly, I don't think they will know fully what's wrong in there until they go in. My rupture was a free perforation with no abcess, I also have endometriosis and PCOS. My surgeon is going to have an endo surgeon there in case they find a lot of endometriosis. I'm scared to have the surgery, but I just can't stand the pain anymore.

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Sorry Dizz----------sounds miserable.

I can't remember if you said you had a work up for gastric motility? If not, maybe check on that to see if that's causing some problems.

I know you already had your GB out.

AG, let us know when you have the surgery so I can add you to my prayers--- :P .

MY Barium double contrast lower GI said 3/4 of my colon was covered with diverticuli in radiology report.

I'm not sure why I don't have worse pain, but the bloat and constipation is part of my daily life. It's odd for me if my bowels are "regular"------and then when I "go" it's like it's all cajangled and everything is crooked------------like my bowels have too many twists and turns, and all waste takes a long detour before making it to the highway to BM-ville. I'm so sick of it.

My GI surgeon called and asked if I was scheduled for the virtual colonoscopy yet. My PCP was supposed to schedule it, but now wants me to do prep in the hospital due to BP issues, and because I'm not stable at all lately.

Dizz, I hope you get some relief from this pain! I know you have already had enough though the years, and your so young! Younger then my son! Oh my-----LOL........... am I old or what.......lol.

Hang in there girl----I'll say a little prayer for you.............. :)

Maxine :0)

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I'm sorry that you're having so many GI issues. Hopefully they'll figure out what's going on through all of this testing, and find the best treatment for you. Most of my problems are the opposite of yours - I have major constipation and am almost constantly bloated. If I don't take my 2 Senna's every night and morning, I don't have a bowel movement at all. If I try to go off the Senna, or try another form of stool softener, I won't go for up to 10 or more days in a row - yikes!

I hope you find some relief soon.

Take care,

Jana

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Dizzy, what kind of GI tests have you had done? I've been in the same boat, except my GI problems predated my POTS symptoms. But since the onset of POTS, GI stuff has gotten worse. The last doctor I saw gave my chronic nausea the name of "nonulcer dyspepsia" and gave me a proton pump inhibitor to try (i.e., Prilosec). I've been on it a week and it's been pretty fabulous. The only real relief in more than a year. As for chronic diarrhea, I've gotten used to that having lived with IBS for so long, but probiotics definitely help. But life is so grand when you have an appetite again and don't feel like you're wasting away!

I hope you can experience this soon. I understand, and my prayers are with you!

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Hi Dizzy,

I am so sorry for your suffering. I wish that I had some suggestions, but I am in a similar boat myself in a bad, bad GI flare (again!), and I don't know what to do. I can relate to the sweating, shaking, flushing, pre-syncopal feeling with eating and GI activity, as well as running to the bathroom nearly everytime you eat. I have been trying Imodium and Zofran and a bland diet (rice, egg whites, bananas, apples). I know that you said your usual meds aren't helping. In the past when things have gotten really bad, I have been hospitalized for a few days to get fluids and rest my GI tract. Would your doctor consider this? Have you tried something like probiotics? It seems like a long shot, but it is next on my list to try. I am so sorry that I can't be of more help, but please know that I am praying for you. Let us know how you are when you feel able to use the computer.

~ Broken_Shell :D

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Hi Dizzy,

I am so sorry for your suffering. I wish that I had some suggestions, but I am in a similar boat myself in a bad, bad GI flare (again!), and I don't know what to do. I can relate to the sweating, shaking, flushing, pre-syncopal feeling with eating and GI activity, as well as running to the bathroom nearly everytime you eat. I have been trying Imodium and Zofran and a bland diet (rice, egg whites, bananas, apples). I know that you said your usual meds aren't helping. In the past when things have gotten really bad, I have been hospitalized for a few days to get fluids and rest my GI tract. Would your doctor consider this? Have you tried something like probiotics? It seems like a long shot, but it is next on my list to try. I am so sorry that I can't be of more help, but please know that I am praying for you. Let us know how you are when you feel able to use the computer.

~ Broken_Shell :P

Broken Shell,

I would not include egg whites in that bland diet. Eggs are a common food allergy or sensitivity. Stick to rice, bananas, broth, toast, applesauce. Do you eat meat? When I'm in a GI flare I can eat plain chicken.

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Dizzy-this only happens to me during an accute flare. Right now I just have run to the bathroom problems every morning or if I eat too much at a time.

One thing I try to do when I have bowel problems for any length of time I take a probiotic. It does not help the dysautonomia problems, but I feel like when everything is "flushing out" (sorry to be so gross) all of the good stuff must be going too.

I used to have nausea- really on have it now when I bend over too much- then I can really puke!

I hope that you feel better soon- I will say I think compression and drinking things other then water have really helped me. Sounds weird but V8 kinda settles my stomach.

FEEL BETTER!

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  • 2 weeks later...

Thank you all for you helpful replys!

I was one protonixs, at one time to help with my GERD, I had some relief with this, however my insurance will no longer cover this medication, and other meds that ive tried have not been very helpful.

Maxine, I had an emptying scan done like 4-5 yrs back, and have had probably nearly every gastro test imaginable since i was 16.

however my GI sysmptoms have taken such a ruthless turn in severity, it probably wouldnt hurt to repeat a few things....

thanks again!

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Dizzy,

Did the Protonix decrease your lower GI symptoms and reduce your bowel movements? Thank you!

~ Broken_Shell

Thank you all for you helpful replys!

I was one protonixs, at one time to help with my GERD, I had some relief with this, however my insurance will no longer cover this medication, and other meds that ive tried have not been very helpful.

Maxine, I had an emptying scan done like 4-5 yrs back, and have had probably nearly every gastro test imaginable since i was 16.

however my GI sysmptoms have taken such a ruthless turn in severity, it probably wouldnt hurt to repeat a few things....

thanks again!

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Hi Dizzy, I'm so sorry for what's happening with your GI issues. Intestinal problems being my main issue, I can completely sympathize, and I too get those "attacks" - what I call them. There seems to be so many things happening at once when we eat, and it's like my body is so offended by food entering it! My doctor asked me to describe the feeling and I said my GI tract felt so sensitive, like it was raw.

One avenue which you might consider exploring is an autoimmune one. My friend has recently been diagnosed with something called channelography (or something like that) which means she has an autoimmune response to food and drink when it enters her GI tract. Apparently it's so newly discovered that there's no google-able research on it, but I'm definitely interested in hearing about it, especially if it might help me too.

In the meantime, I think the advice people here have given you is all you can do. Have you tried compazine? (I live in the UK and here it's called stemetil) but I find it really hits the nausea and vomiting on the head. It's not a prokinetic, so doesn't help the food move through and you can still "feel" the food there - but it just wipes out the nausea so wipes out one half of your problem.

Janey

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