Gi Issues Still In Hospital

[surfgirl14]

Hey Guys. so im was admitted last night for cardiac, dehydration, and GI issues. So wats not going away is the GI issues. I forced myself to eat a turkey sandwhich last night and threw it up. I am so nauteous its really hard to eat. I have chest port and all so they could give me artificial nutrition through that. But that scares me and stuff. I really feel as though everyryone aroud me including doctors are just thinking im faking it. Which you all know is not true and pots is so hard to show when mostly its invisible expecially the GI issues. I really dont wana force myself to eat it make me so sick Do yall have any suggestions? Has this happen to anyone? Thanks.

[jpjd59]

Kayla:

So sorry to hear that you are in the hospital. We know that you are not faking the POTS or GI issues. I think the doctors think that it is all in our head when they don't know what else to do.

Hope you feel better soon!

[surfgirl14]

Thank you. I am really frustrated because now my mom is giving up on me and I Just dont understand why they are not consulting with my GI doctor about these issues. I am frustrated to the max! My heart issues have decreased much but my GI symptoms are still there. Terribly nauteous and then get my nausea meds and try to eat i just either A. throw it up or B. suffer for hours untill the next nausea dose. I just dont understand why they are not doing anything about it and why the havent contacted my stomach doctor. Like I want to leave the hospital and im itching to get outa here but I dont want to leave unconfidnat that im not healthy enough to leave and tht it is just going to return and start the cycle all over again . I just dont know wat to do.

[jpjd59]

Kayla:

I'm sure that your mom isn't giving up on you - she's is probably just frustrated because she doesn't know what else to do. (I am the mom of a daughter who has POTS and it is frustrating not to be able to help your child). Don't give up!!!

[arizona girl]

I would contact your gi doctor yourself, tell them what is happening and ask them to talk with the doctors at the hospital. Have they tested you for any of the illnesses that can cause pots symptoms? Like small fiber neuropathy (thru skin biopsy). Have they tested your immune system for primary immune disease or autoimmune disease, have they checked you for food allergies, allergies, or mast cell issues? Are you hypermobile of flexible?

In my opinion a pots diagnosis is just the begining of a through workup, until other illness is ruled out, only then can pots be considered the cause alone. There are many disease states that cause pots symptoms, have you read the articles on dinets main page under mechanisms and causes. That is how I figured out I most closely fit small fiber neuropathy, I turned out to have a defective immune system. I started getting more ill around your ages, though probably had symptoms most of my life. It took until the last 5 years before I was properly diagnosed, I'm 55 now. I don't wish that for you, the sooner they understand what is wrong the sooner they can manage it better. Stay strong and keep asking for help, until you are satisfied they have it right. As a young women they may be suspecting you have an eating disorder. If that is an issue please admit it, if it isn't don't be bullied into a diagnosis. Don't know if any of this is on target, they are just my thoughts after reading your posts, please do what is right for you and disregard the rest.

Take care now!

[tinkerbella]

Oh sweet Kayla,

Hang in there...mom is just upset to see you sick... I too have been in there several times when they don't know what is wrong with me... Usually they have

me on clear liquids till the symptoms stop or they figure out what is at the bottom of them. Every time the flu come around I'm put in. last year, they

didn't know what was wrong with me for 5 days and then came in all masked up. I had a strain of the flu that wasn't in the vaccine that year. Too late to

treat, as they waited to long. If they are not a pots friendly hospital I always have them watch the changes video on youtube to start, contact my PC/cardo

Neuro any specialist that work with you. Remember, you will get better....

Right now where I live everyone is getting sick with a virus stomach bug. Pots and bugs don't mix very well. So, relax, rest and keep us all posted. I just said a prayer for you sweet one ~

((((((((((((((LOT'S OF HUGS))))))))))))))))))))

WE ARE ALL HERE FOR YOU ~ <3 BellaMia

[Katybug]

Kayla,

Sorry you are it the hospital. I agree with arizona girl that you should speak to the docs in the hospital and ask them to consult over the phone with your GI doc or call your GI doc yourself. You are 18 so you have the legal right to direct your own medical care. I certainly think you should include your mom in the decision making out of respect and also because of the finances if you are still being supported by your parents, but, it doesn't mean you can't express your wishes to the doctors. I really hope you feel better soon.

Katie

[surfgirl14]

Thanks everyone. I will def take everyones suggestions into consideration

[anaphylaxing]

Feel better soon Kayla!

Any chance certain foods could be the problem? I run into that. smoothies or simple cooked mashed foods seemed easier on my system. But i have a mast cell activation/trigger component to my POTS not sure if you have ruled that out yet or not?

Good luck!

[goodnuff77]

Potsgirl have they done a upper endosopy to check for hinatal hernia? I was having problems keeping food down for awhile and couldn't sleep do to discomfort. Then I began vomiting blood on a regular basis. During the endosopy they found I had barrets esphagus, gerd, and hinatal hernia, also delayed stomach emptying. They ended up doing a nissan fundleplacation on me. I still have stomach issues that they are working on but no longer vomit. Dont know if they have looked into this.

[surfgirl14]

No they really havent looked into much. I guess cuz the know I have pots and was diagnosed with gatroperisis so they feel like testing isn't necessary? idk thats my guess. They can't consult with my GI doc becuz for some reason becuz the hospital i am at and the one my GI doc practices at they don't communicate or can't for that matter. I don't understand taht at all but its just frustrating. It may be becuz I have had a upper endoscopy before like less then a year ago and it did not show anything. Soo yea I got sick last night again and the nurse came runnin in my room this morning concerned becuz my heart rate went up .... The pediatrician in charge of me says that if I got worse or didn't get better by this morning they were gona start TPN on me. Kinda freaking out , I heart it was highly dangerous even if its only temporary and your being moniotred closely in a hospital setting Something about liver damange too, and that scares me! Has anyone been on TPN before temporarly? In a hospital setting? How did the monitor you, and make sure you were ok? Does it hurt, or does it make you feel differently? Sorry for the questions as you can see I am concerned teenager lol ... I don't really know what to expect and the hospital I am at are not that great with young adults. I was suppoed to be on the Hemby Childrens side but they said there were not enough beds and since I was 18 then I had to go to the adult side but I would still have the pediatric doctors . I would say it would have to be one of the most frustrating, annoying, and confusing things every! oh not to mention the side remarks I get from the pediatrican like she said to me "well your gona be 19 soon not on the peds side anymore" and "well its time to grow up can't be on peds forever". Like really? Just be quite and do your job .... I mean heck my primary is a pediatrician and all my other specialists are peds and they don't seem to have a problem with it. My ped cardiologist at Duke Childrens sees patients inpatient and out till 21yrs. Give me a break. Not to mention I am so tiny and look so young I could pass for a 14 year old. I was even asked why aren't you on the peds side? mmm wat a good question, I ask myself that! ugh Sorry I just needed to vent for a moment. Thanks everyone for the support.

[tinkerbella]

Feel better Kayla, my thoughts and prayers are with you. Hope you feel better soon. Don't let them stress you out.

[surfgirl14]

Thank you

[MomtoGiuliana]

I'm so sorry you are in the hospital. I don't know anything about TPN. I hope someone here can allay your concerns but don't hesitate to ask these questions of your doctors and nurses. I hope you have a good advocate with you to facilitate navigating everything. Hope you feel much better soon.

[Dizzysillyak]

Hi Kayla,

FWIW .. Have they tried feeding you foods that aren't known to cause reactions in most people ? Things like plain baked potatoes, rice, plain peas, green beans, asparagus, peeled apples and pears, plain applesauce ... No gluten, dairy, soy, eggs, corn, caffeine or chemicals ... Avoid hospital soups like they were poison ... lol ..

I would think that if you asked for some of these foods and ate them, they'd see that you weren't doing this on purpose. Of course, you may still throw this up but at least you're showing an interest in food. Be sure not to pig out tho. Not at first ..

Sadly, we parents get confused when our kids are sick and if the medical community wants to blame the child, we might too. I feel so bad for you and your parents. l hate to admit it but I didn't believe my DD when she first had anaphylaxis. I still feel guilty over that one ... lol ...

IMHO, I'd avoid any kind of treatment that didn't include a simple diet change first ... tc ... d

[mwise]

Hi Kayla,

Don't be frightened with being on TPN. I am a nurse and worked with TPN for years. You did say you had a port in? They will run it through your port-quite painless except the stick of the needle. TPN contains alot of nutrients-electrolytes and I think you will be surprised how much better you will feel on TPN. They will monitor your blood counts closely to make sure they are treating you with the right mixture of nutrients-electrolytes. They hopefully will take you off solid foods and only give you ice chips to rest your gut-stomach. TPN is usually in place of oral intake of foods. You shared you have Gastroparesis-they should be giving you a diet low in fat for Gastroparesis. This may be one reason why you are nausated and vomiting because with Gastroparesis, it is hard to digest foods high in fat content, which also causes pulling of blood to your gut to help digest the fatty foods causing your POTs symptoms to flare up. I would find out what type of diet they have you on in the hospital. I would ask for a dietician-consult to see you. It made all the difference for me being on the right diet for Gastroparesis besides me taking Domperidone too. I will keep you in my prayers and keep us posted on your hospital. I am a mother of teenagers and know your mother hasn't given up on you probably is just frustrated on how to get you better. Encourage her to talk to other mothers here. We are here for her too. Hugs to you both.

[surfgirl14]

Thak you all. I appreciate the all replies, responses, etc. TPN really hasn't been bad at all I am getting blood sugar levels checked every 6 hrs and blood work I got done at 4am this morning. I haven't heard anything back yet about the bloood workd or sugar leveles hoping they were just good. They have gotten a diatecian to consult after she overheard that I was vomitting she came into my room and started to find out what was going on. So now her and my doctor have been working on the right amount of TPN to give me and diet stuff. My heart rate did change though last night like I have never seen it. It was 57, then 52, then 47. Those are pretty low for me if anything I usually stay 74. So idk if they is a good or bad thing. lol.... I'll keep you guys updated.

Hugs

[tinkerbella]

Kayla

Good Morning and Hope today you will start feeling much better and get out of there soon. My doc told me heart rates drop as low as in the 40's when we sleep or at night and for me not to be concerned. We are all so different....yet the same. Having that monitor on all the time is interesting to watch also. So all of our doc, will have personalized ranges that they feel are safe for each and every one of us. We each have different layers to our POTS or

conditions that make docs react at different BP levels and HR. L@@ks like you are in good hands right now. I hope mom is holding up also. I understand both ends also. Spent a lot of years in the hospital with my little guy and it broke my heart and still does to this day. I'll pray again today for you and

send more positive energy to you.

>>>>>-----------get well soon---------------positive energy----------->>>>>>

BellaMia xxxx's

[yogini]

I am glad there is a dietician. You can talk to other people here with GP - I think diet makes a big difference and can make you really sick. The sandwich may have been too much or the wrong thing to eat. A lot of people feel better eating smaller meals, going gluten and dairy free, etc. You can figure it all out once you regain your strength and get out of the hospital. Feel better soon.

[Trach]

Hi Kayla,

I am so sorry you are in the hospital. It sounds miserable.

Someone needs to check me on this issue, but it was my understanding under the patient's bill of rights, your doctors are required to consult a doctor at your request. There is no reason why your doctors cannot speak to your specialist, even if she practices at another hospital. I have been in the same position several times when a specialist from another hospital was consulted. Ditto for other friends too in other states.

If you talk to your doctors again and they refuse, I would request to speak to a patient advocate. You have a gastro specialist who understands your condition. There is no reason for these doctors to "reinvent the wheel".

Feel better soon!

Trish

[SeattlePotsy]

Yes! I have been on TPN (IV nutrition) sence November 2011 (at home). I had the same issue..would throw up after eating. Mostly I think time has helped the most and maybe some meds but it is hard to say. I am on Nortriptyline for what they are diagnosing as cyclic vomiting and have gone up on my Florinef to 0.3 mg and have started on propranolol 10mg twice a day. I am now only doing TPN 3days a week and am planning to try and go off of it next week. TPN, while not the ideal way to get nutrition, is not highly dangerous, especially if only temporary. They wil closely monitor your electrolytes, liver function, and nutrition status while you are on it and adjust the formula as necessary. I hope you feel better soon! Good luck with everything!

[bellgirl]

Hi Kayla,

Sorry I missed this post the other day...TPN will help you nutritionally, and it is great to have a central line for this, as I told you before when I was taking care of cancer patients in PEDS, we used to give this all the time, even through a regular IV...This should make you feel better. Try to rest up while you are there to build up your strength. Certainly they should be able to do the testing that is needed to get to the root of your problem, and also put you on a proper diet to build you up, once you get home. Food is not very good in the hospital, and if you are throwing it up, that even makes things worse with your fluid and electrolyte issues. Be patient with the doctors...Have they checked for infectious disease, celiac, or parasites? All these things could be attributing to your problem...Has gastroparesis been ruled out, too? Do you have a fever, too? I'll be praying that they will be able to get to the root of the problem. So sorry you are feeling so badly...Praying for you and your mom, and the doctors to find a solution other than TPN...Hugs to you!