ok , I have had my j-pouch for 25 years, I'm 65 and have no energy and I eat vitamins everyday, have dizzy spells. My potassium and sodium sometimes fall out and have to go to ER get fluids, Iron is always low. Pills go straight thru me. My diet consist of Eggs and Grilled Salmon. I have Small intestinal obstructions if I eat fiber . I cannot eat fruits and veggies. So what am I supposed to do now as the Dieticians in my area dont have a clue what I should eat as they always say eat green veggies etc. If I do Im blocked for 10-12 hours. Should I get my physician to set me up for monthly vitamin infusions?? My blood pressure is good, My heart has no major blockages. It has to be my nutritional misfortunes. Advice from any expert here please. Or any of you J-pouchers
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I’m so sorry. I feel this so much. For the iron, I have to do monthly blood draws to check my ferritin. If it drops below 50 I get infusions. Have you tried these? They usually help me stay good for 3-6 months. I don’t absorb the pills either.
I also have the chronic dehydration issues that you have with the electrolytes dropping. I do try to drink water all day long but that’s not enough. I struggle greatly drinking hydration drinks because the fruity flavors remind me too much of all the preps, barium and crap I had to drink. I don’t absorb tablets but I seem to absorb capsules. Have you tried capsules? I take Vitassium capsules 3 times a day. They are made for chronically ill people and contain sodium and potassium. They help me a ton with dizziness, fatigue, shortness of breath that I get when dehydrated.
I also take a calcium and magnesium chew once a day. If I stay up on all these, I do pretty well but not perfect.
I don’t have too much advice on the diet part except I understand because I can’t do fiber or fruits/veggies either. You can try a couple of things. Blending some of these into a smoothie, which I sometimes do. And soup can be great too for these things if everything is cooked really really well.
I hope you get to feeling better. Our journeys are not easy and it’s hard for people to understand.
my dietician recommended Floradix Iron & Herbs liquid - has thiamin riboflavin B-6 and B-12 also I buy on Amazon
and I take Vitamin D which are small liqui-gells so easy to digest.
Thank You FTI
Hi,
Sorry to hear of your experience and I hope you find some ideas helpful. It's hard trying new things when you are wiped out! I've had a pouch for 30 years and have difficulty with absorbing iron too. I have just had an extended time in hospital due to the pouch stopping. Now I'm feeling quite exhausted but in the past the FODMAP diet had helped enormously. FODMAP food list | Monash FODMAP - Monash Fodmap
I also take a powder 'intestamine' which has turmeric and settles my bowel. Probiotics at night have also improved my bowel function.
Hi, I started using Happy Baby pear-kale-spinach pouches that are sold in most grocery stores and on Amazon. I find Amazon to be less expensive than stores and buy a pack of 16 at a time. I use these to supplement whatever other veggies I'm eating, such as carrots. I pour the content of the pouch into a mug, fill to top with water or milk and drink half at a time. Each pouch is the equivalent of 1 cup of kale, 1 cup of spinach and 1/2 pear, so some good nutrition is provided.--Rose
Thanks for your replies
Maybe getting your fruits and veggies from a smoothie would be more gentle on your system?
Were you able to find any relief? Anything that has helped you? I feel your pain.