CarolineEJ

Thanks Pistol- her doctor did not want to do the iv port. We will definitely discuss the possibility again. We need something that is sustainable long term.

The good thing about the NJ tube is that she can hook up by herself. We are going to talk to the doctor about increasing the rate (and decreasing the length of time) for the fluid intake. 

My daughter had the same intolerance to her medicine and fluids/foods in general. She had an NJ tube inserted 2 weeks ago. She takes most of her fluids and all of her medicine through her tube now. Her bloating, nausea, and stomach pains have all gone away. Her bowels are moving much more regularly. 

On 1/16/2019 at 3:29 AM, dannyg said:

Any thoughts on the Bowel Movement problem ? Doctor thinks it's not really related to a POTS issue.  He said POTS usually causes people to go more, not less. 

My understanding is tha POTS can lead to gastroparesis. Basically, your bowels slow down and stop working. My daughter’s bowels have been working  much better since she got an NJ tube and takes fluids through the tube at night.  

Thank you for this thread. My daughter has POTS. She has gone to the emergency room for fluids twice which helped both times. Orally consuming her meds and fluids caused her so much nausea and accute stomach pain. Her cardiologist and gastro agreed to an NJ tube. (Naso-jujenum?) It basically goes through her nose past her stomach into her intestine. She gets 1.3 liters of fluids through the tube over 12 hours every night. She also takes her meds (crushed up and mixed with water) through the tube. She has had it for two weeks and it has helped a lot. But her nose is sore and I’m not sure how sustainable it is. 

Staying in bed for 12 hours to get fluids was very doable at the beginning because she was in bed so much anyway. But now she has more energy, so it’s harder to stay in bed as long. But if she misses her fluids (as she did last night) she feels much worse.