Hello, I have a J-Pouch now for 9 years. I've read many stories people have talked about, Thank you . This site helps me feel "not so alone".
I would like to know :
Does anyone take special vitamins?
Any tips on meals?
Has anyone else gained weight?
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Ronnee,
Yes, yes and yes...
I have a somewhat special diet but more due to my k pouch valve and a nasty occlusion site that blocks things up a lot...
I usually eat for my pouch...I try to empty it out completely in the mornings and my diet reflects that fact...so I am on a liquid diet until noon...mostly juice and hot liquids...this works great for a k pouch but may not be ideal for a j pouch.
I do a lot of Greek yoghurt, easy proteins like fish or chicken, am carefull around too much roughage and avoid most "whites" when I can (white flour, fat and sugar...meaning most commercial breads, cakes and pastries plus pasta...I buy whole grain or whole wheat or make it myself..my pouch seems to like it better and it does not turn into wall-paper-paste in my pouch that way).
I do a lot of blending of fruits into smooothies.
I love soups (homemade if possible...make lots, freeze).
Potatoes are my friend but not fried.
My pouch loves peeled apples...fruit and veggies skins are a no-no.
Mushrooms, certain squashes and very stringy veggies are off my list as well as corn and certain peas and beans.
As for the rest, I try to eat disassociated (separating carbs and proteins and only eating them solo and avoiding fruit after meals but sometimes I just can't or don't want to).
I take a good multi vitamin (chewable if possilbe) and extra vitamin B's but that is it and iron or other supplements if needed like vit D.
I exercise a lot and get enough sunshine to keep my body strong and muscles healthy.
That's it.
Sharon
I eat what I want when I want and always have done, that is, unless I had a UC flare up.
I've only had my connected J pouch since Jan 2015 and I still eat all what I've always have done and no changes to diet.
I've gained a little weight, about 7lbs and I can see areas of flab I didnt use to have but that's down to being less active since takedown and maybe my age.
Due to the level of flab I've developed, I'm eating less, trying to use less sugar but I know only exercise will achieve the desired result.
As for vitamins, I don't take any and never have, I always believe we absorb sufficient vitamins from our diet, that is, unless an actual vitamin deficiency has been identified.
Every so often, after a blood test I'm either prescribed Iron or Folic Acid tablets, sometime both but never during 23 years of illness have I ever been prescribed vitamins.
It's difficult to discuss diet and weight gain or loss on a web forums, as there's so many variables, such as sex, age, height, mobility and health.
I weigh 225Ibs, which is probably double the weight of some on this forum and since takedown I've acquired a 40 inch waist.
However, I'm male and 6.3ft tall and such statistics are not so out of the ordinary for a person of my height.
Regarding vitamins...I am horrible about taking mine! However, when I do take them, I feel so much better. The problem is that iron is so rough on my stomach that I don't want to take them due to the nausea and belly pain, but when I don't my iron gets really low. But, when I do take the Forvia chewable vitamins, designed for people with bowel diseases, I feel so much better in terms of energy.
I started using vitamist spray vitamins daily for my UC and J pouch. I always seem to be deficient in vitamins but its getting better. I eat following the blood type diet minus dairy and gluten. I still have problems but I still don't know if its so bad that I should consider removal. The ostomy was the worst experience of my life. I was allergic to the adhesives. I couldn't get the diet right. The embarrassement was overwhelming and I was so excited to get the J pouch. Now my surgeon is questioning me on my quality of life and maybe I should remove it so I don't have so many bowel movements. But I feel I can control them with not eating so much and what I eat if I were more disciplined. My ongoing problem is mild inflammation in the cuff. So I am presently on prednisone, canassa and homeopathy regime for removing bacteria in my gut. I just would love to get an understanding if my life is so bad that I would need to go back to illeostomy?
I guess everyone is different and diet and discipline is different with everyone.
The only vitamins I take are vitamin D and B-12, but that is only because I have known deficiencies for those (through blood tests).
I gained a lot of weight post colectomy and had to go on a weight loss program to lose it. I've gained back about half of it in the 6 years since I lost it, but I know what the issue is- portion control. I walk an hour or more most days to help keep my metabolism up.
As for diet tips, my recommendation is to eat what apeals to you and does not cause much in the way of symptoms. Try to include as much fruit and vegetables as you can, and downplay the carbs. Other than that, it is very individual. One person's "cure" may be another's "poison."
Jan 
skn69 posted:Ronnee,
Yes, yes and yes...
I have a somewhat special diet but more due to my k pouch valve and a nasty occlusion site that blocks things up a lot...
I usually eat for my pouch...I try to empty it out completely in the mornings and my diet reflects that fact...so I am on a liquid diet until noon...mostly juice and hot liquids...this works great for a k pouch but may not be ideal for a j pouch.
I do a lot of Greek yoghurt, easy proteins like fish or chicken, am carefull around too much roughage and avoid most "whites" when I can (white flour, fat and sugar...meaning most commercial breads, cakes and pastries plus pasta...I buy whole grain or whole wheat or make it myself..my pouch seems to like it better and it does not turn into wall-paper-paste in my pouch that way).
I do a lot of blending of fruits into smooothies.
I love soups (homemade if possible...make lots, freeze).
Potatoes are my friend but not fried.
My pouch loves peeled apples...fruit and veggies skins are a no-no.
Mushrooms, certain squashes and very stringy veggies are off my list as well as corn and certain peas and beans.
As for the rest, I try to eat disassociated (separating carbs and proteins and only eating them solo and avoiding fruit after meals but sometimes I just can't or don't want to).
I take a good multi vitamin (chewable if possilbe) and extra vitamin B's but that is it and iron or other supplements if needed like vit D.
I exercise a lot and get enough sunshine to keep my body strong and muscles healthy.
That's it.
Sharon
Thank You Sharon, I like to hear what others eat and vitamins too, I also have upper GI ulcers so some fruit isn't good. Thank you again !!
Oh yeah, I was going to ask what a K pouch is. I have a J-Pouch.
strange posted:I eat what I want when I want and always have done, that is, unless I had a UC flare up.
I've only had my connected J pouch since Jan 2015 and I still eat all what I've always have done and no changes to diet.
I've gained a little weight, about 7lbs and I can see areas of flab I didnt use to have but that's down to being less active since takedown and maybe my age.
Due to the level of flab I've developed, I'm eating less, trying to use less sugar but I know only exercise will achieve the desired result.
As for vitamins, I don't take any and never have, I always believe we absorb sufficient vitamins from our diet, that is, unless an actual vitamin deficiency has been identified.
Every so often, after a blood test I'm either prescribed Iron or Folic Acid tablets, sometime both but never during 23 years of illness have I ever been prescribed vitamins.
It's difficult to discuss diet and weight gain or loss on a web forums, as there's so many variables, such as sex, age, height, mobility and health.
I weigh 225Ibs, which is probably double the weight of some on this forum and since takedown I've acquired a 40 inch waist.
However, I'm male and 6.3ft tall and such statistics are not so out of the ordinary for a person of my height.
Thank You Strange, true about the weight thing, age gender etc... Do you eat spicy things ? Had my J-Pouch now for 9 years and CUC for 25 years. Hope all keeps going well for you, Thanks again for your input !
clz81 posted:Regarding vitamins...I am horrible about taking mine! However, when I do take them, I feel so much better. The problem is that iron is so rough on my stomach that I don't want to take them due to the nausea and belly pain, but when I don't my iron gets really low. But, when I do take the Forvia chewable vitamins, designed for people with bowel diseases, I feel so much better in terms of energy.
Thank You CLZ81,
I take a lot of meds, probiotics , acid reducers etc,, LOL my belly sounds like the preditor vs alien some times. Thanks again for your input !
Kimandor posted:I started using vitamist spray vitamins daily for my UC and J pouch. I always seem to be deficient in vitamins but its getting better. I eat following the blood type diet minus dairy and gluten. I still have problems but I still don't know if its so bad that I should consider removal. The ostomy was the worst experience of my life. I was allergic to the adhesives. I couldn't get the diet right. The embarrassement was overwhelming and I was so excited to get the J pouch. Now my surgeon is questioning me on my quality of life and maybe I should remove it so I don't have so many bowel movements. But I feel I can control them with not eating so much and what I eat if I were more disciplined. My ongoing problem is mild inflammation in the cuff. So I am presently on prednisone, canassa and homeopathy regime for removing bacteria in my gut. I just would love to get an understanding if my life is so bad that I would need to go back to illeostomy?
I guess everyone is different and diet and discipline is different with everyone.
Thank You Kimandor, I too went through a lot in the hospital, blockages, couldn't eat, to many bathroom trips. But my J-Pouch is the best thing, Had an ileostomy for 3 to 6 months. Never want that again. LOL, I'm allergic to the tape too, big red rashes, not fun. Sorry for what you are going through right now , I pray it will get better for you. Thanks again for your input !
Jan Dollar posted:The only vitamins I take are vitamin D and B-12, but that is only because I have known deficiencies for those (through blood tests).
I gained a lot of weight post colectomy and had to go on a weight loss program to lose it. I've gained back about half of it in the 6 years since I lost it, but I know what the issue is- portion control. I walk an hour or more most days to help keep my metabolism up.
As for diet tips, my recommendation is to eat what apeals to you and does not cause much in the way of symptoms. Try to include as much fruit and vegetables as you can, and downplay the carbs. Other than that, it is very individual. One person's "cure" may be another's "poison."
Jan
Thank You Jan, It is soooo wonderful to know that I'm not alone with all this stuff !! I do sometimes take vit b12 and I do feel better. I have ulcers in my upper GI track too, so I get nauseated a lot and never hungry, I was soo skinny after all the surgeries, maybe it is my age, metabolism etc... I love that you are so knowledgeable in this , You are right about the cure vs Poison. Thanks again for your information!!
Ronnee,
The k pouch is the original pouch. It was made with a one-way, no reflux valve and placed on the abdominal wall (like an ileostomy which it was meant to replace or be an alternative for) and has a tiny stoma exit. You intubate with a catheter to empty it out.
A few years later they took the idea a little further and decided to make the same pouch using the natural exit meaning a J pouch...some people went strait to k pouch like me in 1979, mainly because that was my only choice. Others convert to it when their j pouch fails. Some reasons for the conversion are chronic pouchitiis or cuffitis and in some cases fistulas.
It is more advantageous to have a j pouch because you get to keep the natural exit. Less surgery and less possible complications.
The k pouch has a couple of inherient weaknesses like the valve which is fragile and the fact that the pouch sits on the abdominal wall and can fall off, twist or bring about hernias.
That's it for the tutorial!
Sharon
