Hydration, Deficiency, Fatigue.

Sorry to hear you’re having a hard time with energy and fatigue and such. Have you connected with your doctor? Have you had any bloodwork done recently to test your potassium, magnesium, and sodium? Maybe that might bring some insight into how you’re feeling? 

I have had some kidney troubles and got kidney stones to as a result of hydration issues a year and a half after my takedown. I had to have a stent put in and have been told that I will probably continue to get stones. My urologist has me do a 24 liquid/output test to see what type of stones I had but he also wanted to see how much urine I was producing. I think I put out like 400-500 CCs or something like that, and it was in the heat of July. He said if I don’t drastically increase my intake I could end up in the hospital with exhaustion or heat strok. Or do seriousl damage to my kidneys long term. He also said to prevent my type of stones I need to increase my acidic food intake - OJ and stuff like that. Eh, I haven’t done that but I do my best. 

I also notice that in the middle of the night and early morning I wake up super thirsty. I try and drink whenever I wake up to go to the bathroom but it doesn’t matter. When I wake up for breakfast I’m still ready to down a glass or two of water. I don’t often drink any Gatorade or anything. I should also mention I’m three years out from takedown (this fall). I hope this helps, for what it’s worth. 

I'm always surprised when people don't know how important salt intake is, your body needs salt to use water. Sweat, tears, spit and pee all contain salt. Our bodies without a large intestine which does most of the absorbing of these materials needs extra help. Our bodies actually use salt in many ways.

My doctor's explained this before I even had the jpouch surgery. After surgery, they were happy enough to hear that I was mixing salt in my water jug for work, and it definitely makes a difference when I am sweating a lot.

Lack of salt, potassium and dehydration all cause lethargy and are worse when experiencing more than one.

Good luck, stay hydrated, salted and eat some potatoes (or have some potassium).

Yeah, after J pouch surgery I was advised to increase my salt intake and to eat Salty snacks but never realised the importance of doing so.

   When I had the loop ileostomy, I endured severe dehydration, often being admitted into Hospital until takedown.

I’ve done the adding salt to water, drinks etc and adding extra salt to my food but I guess not often enough.

The simplicity of consuming salty snacks, on a regular basis and throughout the day to maintain salt levels; rather than turning to vitamins, hydration powders or any other product which claims to boost energy.

Also, ask those suffering from lethargy to report back if their symptoms improve by following my suggestion.

Thank you for your post. Although I have no advice to share I realized that my current fatigue is likely from low sodium. And I know from experience that a bag of cheezies are usually the perfect Rx! Going to get some asap!!

I don't mean to be so down but I have had a pouch now for around four years.  It has been depressing.  Fatigue, constant diarrhea, GI pain, debillitating burning rectal pain.  If I eat anything, my day is pretty much over.  Most days are spent between the bed and the bathroom.  Often I cannot get the pouch to empty without the aid of enemas.  Then it is a semi-bloody mess that just shoots in every direction and makes it so I am embarrassed to leave my home.  My life is lived in a maximum of two hour increments.  Otherwise I am at risk for accidents.  And I can never risk trying to relieve gas for fear of an accident.  The only advantage over an ostomy is I can have sex without disgusting my partner, and that is a big advantage.  But in exchange for that, I give up pretty much every other aspect of my life - travel, exercise, social life, any activities, going out to eat, etc.  Is this typical, or am I suffering from something unique?  Also, during my last scope my GI found pre-cancerous cells in my rectum.  Any advice or directionis greatly appreciated.  I feel like I am at the best doctor and hospital in my area.

@Brian B Tampa posted:

I don't mean to be so down but I have had a pouch now for around four years.  It has been depressing.  Fatigue, constant diarrhea, GI pain, debillitating burning rectal pain.  If I eat anything, my day is pretty much over.  Most days are spent between the bed and the bathroom.  Often I cannot get the pouch to empty without the aid of enemas.  Then it is a semi-bloody mess that just shoots in every direction and makes it so I am embarrassed to leave my home.  My life is lived in a maximum of two hour increments.  Otherwise I am at risk for accidents.  And I can never risk trying to relieve gas for fear of an accident.  The only advantage over an ostomy is I can have sex without disgusting my partner, and that is a big advantage.  But in exchange for that, I give up pretty much every other aspect of my life - travel, exercise, social life, any activities, going out to eat, etc.  Is this typical, or am I suffering from something unique?  Also, during my last scope my GI found pre-cancerous cells in my rectum.  Any advice or directionis greatly appreciated.  I feel like I am at the best doctor and hospital in my area.

Brian, your situation isn't typical at all, though you're not alone. You haven't told us what your doctors think, and what you've already tried, which makes it hard to suggest where you might go from here. Can you give us some more background? Also, some of the folks you'd like help from might not see your post in the middle of a thread called "Hydration, Deficiency, Fatigue." You might want to start a new thread.

Brian... I agree with Scott; your experience of a j pouch isn’t typical.

I complain of fatigue and experience bouts, it comes and goes; I certainly don’t experience any of what you’ve described.

As Scott has suggested; maybe it’s best to create your own thread entitled  “Help; life pretty much miserable since Takedown” and copy what you’ve already posted.

Maybe someone can help point you in the right direction to improve your quality of life.

Thank you.  My doctors have tried a variety of biologics and none have been effective since Remicade, which was before my colon removal.

I find that adding salt to my water helps a lot. I have measuring teaspoons and use a certain system of adding salt to my water. And eating salty snacks and potassium snacks. Try that