getting worse while still waiting on some answers

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Jill_2013
Regular Member


Date Joined Feb 2014
Total Posts : 70
   Posted 3/31/2014 11:25 PM (GMT -6)   
So after about a month of having non-stop diarrhea my doctor finally told me it was bc of all of the over the counter anti-acid meds i was taking, zantac and maalox to compensate for not having protonix. Mom has started going to all of my appointments with me so she now knew the importance of my being on the expensive protonix. We are tight on money so she called my brother and we were able to get me back on Protonix. I've been back on it for 2 weeks now. No major heartburn. Now if I eat too much I throw up, so I've been trying to watch how much I eat in one meal. I also have break through heartburn but its not enough to need more meds.

Over the weekend I started getting a new symptom. My chest pounds like I guess where the bottom of the esophagus is and sometimes hard to breath. Is this normal with GERD and a hiatal hernia? Also I would like to know if there are weight restrictions with a hiatal hernia? I've started sleeping in a recliner to see if it help any with the constant sore throat but I'm not seeing a difference.


I go back to the doctor tomorrow to see if he has found a solution for surgery since we are worried I have scleroderma and surgery could be potentially dangerous for me.

So far I've had a endoscopy, manometry, and a barium swallow. The manometry study show extremely low numbers at the bottom of my esophagus and the barium swallow found the hiatal hernia. Along with these test they found out that the walls of my esophagus are thickening. I am waiting to be tested for Scleroderma.

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 4/1/2014 1:46 PM (GMT -6)   
Jill,
 
I am sorry to read about you issues and I hope your Dr. will have some definitive answers for you tomorrow.
 
Try eating smaller meals frequently versus large heavy meals.  Also do you have any thing for nausea and vomiting at home.  You may want to try a med - talk with your Dr. re a prescription for the nausea.  Also acupuncture works for some people but is usually expensive - at least where I come from.
 
Kindly,
Kitt
 
 
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

Jill_2013
Regular Member


Date Joined Feb 2014
Total Posts : 70
   Posted 4/1/2014 4:46 PM (GMT -6)   
Doc appointment went well... he said the chest pains were from my esophagus spasming and he said being on a low dose of valium would help those muscles relax. He has been consulting with other doctors and all believe I have scleroderma. Since hes a general surgeon he is trying to get all of the information together so that he can order all of the right blood work. If I do have scleroderma we have to go down a different route because a wrap surgery will not work for me. Nothing much has been said about it but I'm thinking a reconstruction surgery may need to be done on my lower esophagus in order for me to get the motility numbers back up where it should be.

I am hoping for the right diagnosis, to get better soon and I am thankful I found someone who is working with me to figure this all out.

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 4/2/2014 6:04 AM (GMT -6)   
Dear Jill,

I'm so sorry to hear that you may have scleroderma. I really hope that your surgeons come up with a good plan for you that will ease your symptoms - is the Endostim of any use to you at all?

I too am having a terrible time with reflux, and motility issues and also cannot have a wrap, so we are both on our journeys.

It sounds as though you have a good team around you, and that is essential.

all the best,

Pink :-)

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 4/2/2014 8:13 AM (GMT -6)   
Jill,
 
((((((((Hugs)))))))))))).  You are in a tough situation.  Proper diagnosis of scleroderma is often long and difficult, since it is a such a rare disease, and one which few doctors or patients are well-versed in. Many initial symptoms may be rather vague (fatigue, achiness, cold hands, slight trouble swallowing), which often causes doctors, and sometimes even the patients, to wrongly assume that the symptoms are psychosomatic.
 
about half of patients are diagnosed by a rheumatologist so do look into seeking out the opinion of this specialty group of Drs.
 
Keep on talking with us as we do care about you.
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."
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