I am my husband’s care giver and I don’t normally share

[felizesperar]

Hi I am new to this site and to posting anything anywhere in general, but I have so many questions I thought I would give this a try.

My husband has been on dialysis for years and will always be on dialysis. He has many health issues but the most frustrating thing for him is not being able to control his bowels well. It’s embarrassing for him and a mess for both of us. Rock hard stool one day and runny mess the next. On top of that it is the dark toxic color only a phosphorus binder can produce. Sometimes the bathroom looks like a crime scene! It is really difficult to clean that stuff off the toilet! Ok I feel a little better just writing this. Maybe it will help some of you. Please share if you know what I am talking about! Thanks

[cs65 NKF Ambassador]

Has he spoken to his doctor about maybe changing the phosphorus binder? Tried one once that gave me really bad indigestion that felt like chest pains. I stopped it and went back to the Tums. Also, it helps to keep a well balanced diet - plenty of fruit and vegetables and meat, poultry and fish and try brown rice once in a while as well as Greek yogurt sometimes. The very bland diet we're on for kidney disease doesn't always give us what our bodies need. Some variety in your diet with moderate quantities helps.

[felizesperar]

Hi thanks for the response! He is actually only able to take the chewable phos binders. So we are limited there. Her do try to vary his diet but we just can’t figure out any pattern at all!

[Kbristow in reply to felizesperar]

You may want to keep a log of what he is eating for now so his renal dietician knows how what to recommend. As you're varying the foods you may also begin to notice patterns of what foods might be causing more problems than others. Check with the dietician about more high fiber foods and a well balanced diet as cs65 suggests. I like to use chia seeds in my smoothies so you can ask about that. It's good to also stay away from processed and high sodium foods.

[felizesperar in reply to Kbristow]

Hi thanks for responding! Yes, I think we should track what he eats- I need him to agree, which can be a challenge- he is exhausted for a full day after dialysis and doesn’t want or feel able to do much at all. I try, but it needs to be a full list for it to mean anything. He also has to stay away from high fiber foods due to diabetic gastroparisis - slow bowels, Dutch to long term diabetes (since he was 6), he’s so between a rock and a hard place most days.

I will try to get him to start tracking his food! Thank you!

[felizesperar in reply to Kbristow]

hi- I wanted to provide an update to everyone- we started tracking his food, activities, medicine (extra stuff like stool softeners, vitamins, etc) Here is what we learned:

Natural stool softener in the AM and PM, AND Miralax, only every other day. This has significantly improved his bowel movements and frequency. We also are steering away from anything with an alfredo sauce - apparently really causes problems for his digestion! Thank you all, he is in such a better place now- and you have all helped!

[cs65 NKF Ambassador]

I wonder is he should check with his nephrologist or dietitian about taking something like metamucil for fiber, or if his condition doesn't allow that?

[felizesperar in reply to cs65]

Hi yes sometimes he takes that and stool softeners - I sometimes think he takes too much of that stuff. There are just so many variables.

[felizesperar]

Hi yes he does that already.

[mieka]

Does he take any type of a stool sofener? It may be that the frequency & dosage needs to be adjusted. I have had to play around with what stool softener & how much & when in order to find what works for me. Currently on Docusate capsule every other day. Any of the liquid softeners such as Miralax or Lactulose created a mess! Also - age & weight can make a big difference in what dose to take.

[JJForDad]

My FIL has Sodium Bicar as his binder. It isn’t chewable but with what it is, may be worth asking the Nephrologist if it can be chewed. I think they crushed it for him when in rehab. But plz ck with doctor. What I’m saying could be way off base.

Good luck!

[felizesperar]

Thanks for the suggestion! We will ask the doctor!