my stomach hurts so BAD!

[dizzygirl]

Ok my fellow potsy pals.. I am apologizing in advance for a possibly whinny post!!..just forwarning.. i am putting at the begining now that 've finsihed typing my post.. its kinda long.. and i'm long winded today.. sorry.. so if your too potsy tor ead to the end I understand!!

I am highly frustrated at the lack of knowledge of GI troubles that come along with ANS dysfunction.. I have a GI doc.. who after doing basic testing.. wont look any further.. into things that I feel would be beneficial looking into considering things.. like an emptying scan to check for gastroparesis.. whci I dont think is am unreasonable request consider my guts hurt all the time!! and for checking about the blood pooling in my stomach/guts whatever--you get the point.. but I dont think that that is out of line either.. !! they look at me like I am an alien from outerspace!! and say well we cant do blood pooling test here.. so referr me out to somebody who can!! its not that hard you know.. I'm certain that cleveland would do the test!! HELLO!! I'll make the stinkin appointment myself!!

But Ok reason I actually am posting.. as some of you know I am having alot of "bowel" GI troubles..whci have gotten severe over the last yr or so....I jUly (05) I had TTT done.. and it knocked me thru a loop..(i told the doc doing the test that the TT gave me a headache..(the standing) and he asked me if I was stressed out.. I'm like yeah you just made me stand for 30 minutes.. you that would stress my crazy body out!! I was told that I had a tension headach.. well shoot went back to the hotel and the next morning the nasuea and SEVERE tummy pain woke from my sleep..(it was about 6am) and I was SOO sick and I havent been right since--I spent that week traveling and having tons of testing done "outpatient" about 4 1/2 hours away from home..

sorry.. rambling again.. well since then I have had alot of trouible..diarrhea.. nausea..vomitting (violent vomitting..like projectile vomitting.. YUCK!).. Severe and I do mean SEVERE stomach pain.. .. bloating.. almost complete and total loss appetite.. and when I do eat it isnt very much.. a few bites. and i'm full.. or I'll start eating.. I mean literally start eating will take 2 bites and the pain startsa gain.. and i'm off and running to the toilet with Severe diarrhea.. or vomitting or sometimes both..and this cycyle isnt even a cycle any more.. its more like a matter of being.. like it is just a daily part of living like blinking you eyes are...I have had instatnces were I've gone to the doc and I have had absolutely no bowl sounds.. yet my guts hurt SOO very badly.. and other times they will be very "HIGH pitched" and still hurt like mad...

yet still there are even more concerns..I very OFTEN will have diarrhea that is like water.. and the toilet will be filled with blood.. and other times were there is blood on the toilet paper..... I have had my "stool" tested.. it negative.. I had a ct scan of my guts w/ that barium crud you have to drink.. that was negative of course! and I also had a tube dwon the thraot test.. checking for narrowing of my esophagus.. b/c of the swallowing problems i am hving too.. that was negatvie as well..

Now for my next concern.. as well as having bloody diarrhea.. I too have also puked up blood.. more thenonce.. and a few time I have had vomitting that looks like I am puking up coffe grounds...I had at one point thought that maybe it was red dye from the agatorade casuing my problems..of redness.. but have long since stopped drinking red gatorade or anyhting with red dye in it.. so its not that..

I am very frustated.. I have a feeling that something mroe is going on w/ my tummy..or that all of this is ANS related and they wont be able to do anything to help me.. what else is freakin' new...

my stomach hurt so badly yesterday.. it was unreal.. I tried eating.. ddint go well.. I ventured out to walmart after midnight last night.. and wasnt in there.. had to get water a and few things... and I tell you what.. my guts acted up so badly.. the act of standing up for a litel bit was too much I had to run to the potty 2 times while being there..(well not run.. HA! I couldnt run ever!! more like shuffle my feet to the potty is more like it. ever try to do the shuffle fast?? hmmm.. doesnt work real well)..it infuriates me that I cant even stand for a few minutes.. or that instantly when I sit up or stand that the pain in my guts/tummy intensifys instantly..i do mean instatnly!!

I'm just sick of this potsy full of pain life that I am living.. I go for days now where I cant eat or drink for that matter.. I have no desire to eat.. I try to drink fluids to keep from getting real dehydrated. but shoot.. Iam so nauseated.. that even small sips of fluid are too much.. they make the nasuea much much worse..god I feel like I had the flu.. or that flu-y like nausea w/ cross felling of motion sickness from the momemt I wake up (my eys arent even open yet!! to the moment I go to sleep.. when I do sleep!!.. its like an intense nausea.. that keeps you from nothing moving kinda thing.. and i'm tired of it.. I was poppiong Levsin all day yesterday and it ddint touch the problem.... not mention tha fact that my intestines will hurt so bad to the point that if clothing is rubbing on my skin on my guts that i cant stand it b/c the skin on the outside hurts too!! My GOD i must be loosing my mind.. I tell ya.. that si it potsy has offically stolen my sanity..

i cannot get ahold of my doc who treats me for pots. I have been trying for over a month now!!.. I'm at a loos of what to do.. I do what i'm suppose to.. and I'm not getting better.. I read some records yesterday that I got that say that my pots is very Refractory" menaing that it is not responding to numerous medical intervention treatment over the past 3 yrs.. that i continue to get severely debilitated.. depite the fact taht I am and have been seen by some of the tops docs in the country that handle POTS.. how depressing.. but true.. so very true...

it upsets me w/ the GI doc.. tha apparently it must be allright for me to puke all the time and have diarrhea.. and for there to be so MUCH PAIN in my abdomen/tummy.. and you know the bleeding.. you know that is just normal too.. and the switching from constitaption to dirrhea just like that.. you know that's ok.. that is normal.. the fact that I canot eat or drinks ANYTHING for days at at time. and yet i GAIN weight.. you know that is ok too.. and if one more doc tells me that I am gainig weight b/c I am eating the wrong foods or b/c I am eating TOO MUCH I am going to freakin/SCREAM!!...I donteat yet I dont loose weight i gain weight .. you know that just takes the cake.. mmmm cake I wish i could eat some cake!! that would atelast make me happy for a moment!..despite the misery it would cause...and it one more PERSON (who doesnt know they are talking about) tells me that I go from one extreme to another in symptoms I will loose my mind!! you know ataff that works with people who are home bound realy should keep there darn opinions to them selves..b/c I certainly dont want to here ther worldly views on matter of dysautonomia.. when they have never heard let only treated a dysautonomia patient before ever!! Em being the first one that an agency has dealt with!!.. GRRRRRRRRRRRRRRR

have tried some drinks. I tried the um instatn breakfast drinks.. while they taste decent.. I cant hadnle the milk or the mix or possibly both.. they casue bad pain.. I cant find any of the drinks...though I found boost breazersat one pharmacy. but they were OUT of them. and ahvent had any more back in.. and besdies that I couldnt afford to buy them every month.. not on the money that you get fromm SSDI.. what a joke.. though I can say that i taken a liking to gerber baby apple juice.. when I can drink something.. even water makes me wanna puke my brains out.. UGH..

I'm scheduled for a lovely colonoscopy next week.. Oh what ajoy.. But am seriously wondering how I am going to drink the prep kit when i cant even swaloow my oeon spit without wanting to or actually puking.. hmm the wonderment amazes me!! and not to mention the dehydration issues!! hello.. I see a syncope spell on board there.. geesh!

i will stop now.. i'm sorry this is so long.. and if you cant read to the end of this I understand..b/c i really am on rant today.. and I dont feel good and am highly frustrated and fed up and jsut dont want to deal with crud anymore!!

amajorlygreendizzygirl

[JaneEyre9]

Linda,

You poor thing!! I feel so bad that you are in distress and can't get anyone to help! You sound like you feel miserable! I wish I could help. Just want you to know that I care and i hear your frustration! It's just like you want someone to listen to you but no one can make these awful things go away or even tell you what might be causing them! What you are going through is so tough. Hang in there and keep pressing for answers. I know it is so hard to press for answers when you are sick! keep us updated on what is going on!!

Kristen

PS- I have done the mad shuffle to the toilet too...it's the worst when you are in public!

[Lulu]

linda

go to the ER now!!

coffee ground vomit indicates a GI bleed a seriuos medical condition that needs to be evaluated right away. i don't mean to scare you. but that is a RED FLAG symptom!

good luck and keep me posted!

love, light and courage

Lulu

[Guest Belinda]

I am Sorry Linda...They need to get on this..NOW. I will say no more and talk about it to you later!!

Belinda

[DSM3KIDZ]

I'm sorry your in soo much pain and distress. You do need to find a doctor that will take the bleeding seriously!

As far as your other symptoms..I don't have the pain or vomiting but I do have the nausea. It has been with me for 18mo now and I feel so sick I wonder when the baby is coming. I feel like I'm in my 1st trimeseter of pregnancy for 18 months. It is very debilitating because you feel if you move you will vomit. So I do feel your pain on that one.

Have you tried a motility specialist? I had no luck with G.I. doc but the motility spec. know how horrible this can be. I don't know where your located but in Milwaukee, Wisconisin their is a motility speciality who specializes in autonomic dysfunction. He hasn't cured me yet but hoping we figure it all out soon.

I don't really have much advise I just wanted you to know that you are in my heart and I hope real soon their will be some relief for you.

Hang in there and please update us

dayna

[dizzygirl]

Hi folks...

thank you for your support.. my docs know about the bleeding and vomitting and everything.. thaty can not find a cause for it.. so at the moment I'm kinda hanging in the lurch....I was having aproblem with bleeding yesterday.. and today isnt too bad.. but the pain in my guts is a big ouchie.. and the ER.. well my i've been there too.. and it does no good!!

SO soebody kindly pointed out that maybe I need to start looking for a doc outside of the town I live shoot maybe even the state.. so I'm going to do some calling Monday... I'm tired of feeling like poo-poo..(punt intentded)..

I'm hoping to get ahold fo dr. G or bev also on monday.. and pray that they have some insight.. I kinda feel lost at sea so to speak..and dont know where to turn for help...

about the puking coffe grounds.. that happens periodically.. with no rhym or reason behind. just bad stomach pain.. and no set cycle behind it either.. it just happens.. and that is when I have the bulk of the projectile vomitting... quite digusting in fact.. but the truth..

well i'm off for now...as I am trying to type and the sentences are slanting and moving.. and the colors are getting dark..my vision is fading.. time to lay down..

again thak you guys

linda

[Jaime]

I have had tons of experience with GI issues because my mom had a colon and bowel resection, Crohn's, gastroparesis, and bacterial overload. The blood on the diarrhea could be from the diarrhea. Sometimes I get that when I am constipated or when I have a lot of diarrhea. My doc said that that is due to the feces (sorry to get so graphic!) is causing tiny tears in your anus/rectum and that causes blood to be on the toilet paper when you wipe, but we are talking small amounts - the entire wad of toilet paper shouldn't be covered in blood. You do have very early satiety with gastroparesis and the best thing to do is go on a low fat diet. The way the diet works is you go on a clear liquid diet and then you slowly advance. It is a low fat diet though. Here is the diet I put my mom on and it helped with her gastroparesis alot, but it is hard to follow (also you should always ask your doc before changing your diet!) http://www.gicare.com/pated/edtgs08.htm

Also, any pharmacy should be able to order any nutritional supplement for you...just ask the pharmacist. Also, carnation instant breakfast has a new protein supplement (like ensure) that has no milk or soy products in it and is good for GI patients because it has fiber, probiotics, and prebiotics (good bacteria) in it. You can only get it if a pharmacist orders it for you, but you don't need a prescription. Also, Boost products do not contain milk products either. I would demand a referral to a GI doc that knows what they are doing...my mom has had many more problems than she would have had if she had a better doc. Also, the blood loss is troubling because you could become anemic. Does your insurance require a referral because you may be able to just call Cleveland Clinic if they or your insurance don't require the referral. Good luck, I know how awful GI problems are, but there are answers out there! Let us know what you find out!

Jaime

[MightyMouse]

Oh Diz, do I ever get what you're going through. I was wakened at 3 am with intense abdominal pain and wretching, but nothing came up. I rarely vomit, but sometimes wish I would b/c I'd probably feel better afterward.

I've been on Zelnorm for about 2 weeks, in addition to Miralax/Glycolax--it's helped me be a bit more regular, but now I have a problem that when I have to make a bm, I need to get to the bathroom IMMEDIATELY because otherwise I'll need a change of clothing and a bath!

Changing doctors is always a tough choice to make, but if you feel your care is inadequate, it might just be worth it. I drive about 30 miles to my GP because not one doctor locally took me seriously. I feel like I hit the jackpot with getting such a great GP who really cares. I also have a great GI doc, EP Cardio, Neuro and Pain Management. But, at over 40 years old, it quite literally took me years to find some of these people after many fits and starts with less-than ideal doctors, and some who were downright insulting jerks who probably cared way more about their the size of their bank accounts than they did about figuring out what was wrong and how to help. Oy, I'm ranting with you... !!

Back to topic: finding a good doctor is like hitting the mega millions or powerball! You have to throw away a lot of tickets before you win a prize, yes?

Nina

[dianaD]

Hi,

I'm so sorry about the trouble you're having!

Have you been checked for carcinoid? Chromogranin A (a blood test) is the main test for it. Carcinoid can cause all of your symptoms and is a differential diagnosis for POTS. Please ask them to check for it!

Diana

[Dizzy Dame]

Linda,

I'm soooo sorry you're going through the runner AGAIN. I'm beginning to believe you really are allergic to your body

Take it easy, and don't be scared to go to the ER to get your vomiting under control. I really hope they find out what the heck is going on with you soon

((((((((HUGS)))))))))

-Lauren

[dizzygirl]

thank you guys for your suport.. Love ya all!!

lauren it wouldnt surprise me if I'm allergic to my body!! I have to keep telling myself "I LVOE MY BODY" I LOVE MY BODY" ---when i really dont!

I'm feeling abit better today.. I'm not quite so nauseated.. thank-god..I was up all-night keeping the toilet company.. ...a nd things finally settled down around 8:30 -ish enough for me to lay down and go to slep for a bit..

diana --i will do a search on that blood test.. at this point anything si worht looking into..

I'm calling my GI in the morning.. and am going to request to see the NP.. not the doctor...the NP was who I saw initailly and she was FANTASTIC!!.. so I think that seeing her at least till I can find a somebody else would be better then nothing at all.. she was more open to the ans relation of things and atleast looking into more then the basics.. so we'll see..

Nina girl I feel your pain.. literally I do! I have the problem with bowel incontinence .. regardless.. lovely addition to the stuff that is allready going on.. how humiliating!!

But I'm so glad that the Zelnorm is helping you!! that is great!!

anotquitesogreendizzygirl