Hello,

My daughter had a total colectomy in 2009 and also has a kidney transplant. She has been having difficulties staying hydrated and has been hospitalized many, many times for dehydration. No one has even really mentioned the fact that she doesn't have a large intestine to absorb any of the water that she drinks. She is supposed to drink 2 liters a day, but rarely can drink that much. I am currently talking with her and her healthcare team about a g-tube. She is 16 years old and does not want one. My concern is that her kidney will continue to suffer damage if she keeps on this track and she'll lose it, placing her on dialysis. I really think this could change her life!
I guess my questions are: Does anyone have tricks to staying hydrated with a j-pouch? Does anyone have a g-tube to help with hydration with a j-pouch?
I would just die if she lost this kidney (it is mine and I don't have another one to give her) because of hydration issues.
Thank you!

Original Post

Wow - she has been through a lot.  I have suffered with dehydration- there is a hydration powder called Drip Drip and another called Liquid IV - you mix them with water.  I also add a little Benefiber to the drink to allow it to stay in my small intestine longer.  This could help.  Best of luck.  Doug 

 I have a K  pouch, which means less small intestine  than the J pouch, plus no colon. I too have been hospitalized for electrolyte problems.  it’s important to be conscientious as to how much water one drinks, which for me is about 3 L daily.   my kidney doctor Figured out I needed sodium so I take 2 g of sodium daily during the winter and up at to 3 and sometimes 4 g during the summer.  It’s a tough situation that requires constant maintenance/observation.

I also have a k pouch and have been in the ER for dehydration several times. I am on potassium pills (prescription). I also found something called salt sticks (Amazon) and nunn tablets  (put in water bottle, many flavors)—found at bike stores,  vitamin shoppe and amazon. I have also tried the liquid IV (tastes pretty good)

i always ask every doctor I see in the ER about dehydration. Several have said drinking just water actually flushes out the electrolytes. For me, by the time I feel nauseated and light headed, it is too late for drinking electrolytes to work. It sounds logical—but who knows???

i hope you find something to help your daughter. 

Everyone has their own ways to get motivated. I treat water like medicine that has to be taken many times per day. I rarely pass a water fountain without taking a drink. I don’t supplement electrolytes, but some folks need to.

You write that she can rarely drink as much as 2 liters per day. What’s stopping her?

Thank you all! I will look into the electrolytes and the Benefiber... she does take 6 mg of Loperamide/day... she doesn't have the best diet (she is 16)...
Scott, you ask what stops her - it's hard to make her understand how important it is to drink her fluids every day. I am a single parent, so I have to work and I cannnot stay on top of her to drink all day long. She says it fills her up too much and she just doesn't remember to keep drinking all day long. We've tried drinking apps --- she also has severe depression and anxiety, which doesn't help matters.  I'm at a point where I just think the g-tube will be a life changer for her. She won't have to stress about drinking - and I won't have to nag her all the time - and she'll feel better! It's a very difficult situation and I would love an easy answer... there just isn't one.
 

Teenagers are very, very tough, and each is unique, so what works for one will often fail for another. You’ve also probably tried so many things already that most suggestions here are likely to duplicate those. That being said, here are a couple of things that come to mind:

  1. In her travels through the health care system has she run into a caregiver that she deeply trusts? A visit/conversation with someone like that might make a real difference.
  2. She must be numb to the “joys” of hospital care at this point, just to survive. This is very vague, but anything that helps her be more awake/present in her life is likely to be beneficial. Some possibilities that come to mind are meditation, mindfulness exercises, yoga, etc. The “right” choice here is whatever intrigues her rather than the efficacy of the method itself.
  3. Was she on dialysis before the transplant? A good look at the dialysis “lifestyle” might be motivating.
  4. There are some very cool water bottles out there (I just saw a few at the Aquarium gift shop). If it seems like a desirable accessory rather than a medical device it might be more likely to be carried/used.
  5. Sipping throughout the day will work best, if water can be kept accessible and welcome.
  6. You don’t say whether extra carbohydrates would be good or bad for her from a health point of view. If more sugar would be fine for her then there are ways to make fluid very desirable (as Coca-Cola has discovered). Whether it’s exotic fruit juices or lemonade doesn’t matter very much. There are folks here who believe sugar is the devil (I don’t share this view), but for most of us dehydration is much worse.
  7. Once you gave her your kidney it became hers. You must, I think, revoke any claim on it. It was a gift beyond measure, but you gave it to a child (for all the right reasons). Sometimes children break precious things.

Good luck! I raised two girls and I’m pretty sure they didn’t hear a word I said while they were teenagers.

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