Dietician for j pouch

I'm 8 weeks post takedown and I meet with a nutritionist a few weeks ago and she wasn't too familiar with jpouch cases and  didn't know much but at least she went to initiative to going on the Internet and finding out more about jpouch  and nutrition and it pretty much comes down to a low residue diet and you can google it and get an idea.... BTW congrats and your takedown Good luck! 

Not sure you will get any useful info other than sound dietaty advice. Finding a dietician with j-pouch knowledge/ experience is probably quite unlikely. Just finding doctors familiar with a j-pouch is a challenge. Dieticians will have expertise dealing with IBD though, and post op GI surgery in general.

I found trial and error useful. People are looking for some sort of "rule book," but there isn't one. Dietary tolerances are highly individual.

Jan

Jan Dollar you said it perfectly! It took me a while to understand that with my thick skull 

I found a food diary, internet and common sense the best form of dietary advice...And of course this site.

Most medical professionals, unless they are in the field, do not know about or understand pouches and their 'special needs' so too often their suggestions are practically useless to us.

My GP sent me to an endocrinologist who sent me to a dietary 'clinic day' where you eat, rest and play all day long (sort of like kindergarden!) and they watch you.

Then gave me my 3 perfectly balanced meals...I couldn't eat 90% of what was on their trays....I was then told that I was uncooperative, resistant to change and unable to follow the program...I responded that I hated occlusions and that my pouch could not function on that much fiber.

I gave up...

Take whatever good advice that they have to offer and disreagard the rest...

Sharon

SKN69, I am curious about your food diary. Did you develop your own or are you using an app or other source? 

My work is starting a class to teach us how to eat a balanced diet.  I think it's being taught by a chiropractor.  I'm interested to see what they say. I'm sure I can't eat half the items they want us to eat.  But I'm going with a positive attitude to try it out.  

Starry, knowing what comprises a good, balanced diet is a great basic start. My goal is not to be perfect, live forever, or meet some arbitrary standard. But, knowing what good nutrition is helps me do the best I can to get all the nutrients my body needs, have optimum health, and reasonable pouch function.

It is not particularly easy, and the older I get, I still wound up with deficiencies. My take away is to be flexible and ready to adapt to changing conditions. Not very comforting, I know. But, it is true.

Jan

Jan - so very true!  Great advice. 

when I had my takedown 5 weeks ago, a dietician met with me before discharge and so happens her husband just recently had a jpouch takedown as well. But she just gave me the basics of what to eat and not eat and experiment and try things slowly. Not anything the average jpoucher already knows...so wasn't much help

You are not likely to find a dietitian who specializes specifically in j-pouches. Even with the advances in the surgery over the years, overall it's still a relatively rare procedure. However, that doesn't mean a general dietitian wouldn't be helpful in the early stages.  Because I had severe weight loss with my UC, I was referred to a dietitian after my first surgery. She gave me tips for eating with an ileostomy, almost all of which can be carried over to the j-pouch. However, the best advice - as others here have said - is trial and error. We ALL have different food tolerances, and the only way you are going to be able to determine what you can and cannot eat is literally by trying the foods out. A food diary can be helpful. Although they can be a little tedious to keep, having a readily available record of everything you've eaten will help you to more easily identify and eliminate foods that may be problematic for you.

I know what I'm about to ask has nothing to do with this subject... Can drinking Blue Gatorade make stools look interesting? Or should I be alarmed? 

Yes it can. You should not worry.

Jan

Jan Dollar posted:

Yes it can. You should not worry.

Jan

Well I'm gonna stop drinking blue Gatorade then lol .... 

Starry Night, 

I don't App!

Or at least not yet. (not really my generation but that doesn't mean much)

I started my diet long before email, smartphones and apps were even in their inventors' minds (and possibly before they were born!)....

My 'diet' is a combination of common sense, basic knowledge in nutrition (I studied for a couple of years but have no diploma in it) trial and error.

It is sort of like a musician. You learn how each note sounds individually and then how they react together and finally you learn to make music.

That is my diet....I know that for example, iron is absorbed better with vitamin C to become more bioavailible or other that night cramping of legs (or any muscles day or night) is usually due to postassium loss so a banana a day helps (or a boiled/baked/steamed potato) or a tomato salad...each element has a job to do....you should not (unless you are alergic or hate the food) say that you will never eat something again but try to find a way that works for your pouch and your body...if not, you will create frustration and vitamin deficiencies.

I eat most food groups just not all at the same time (or I try not to...do not take a picture of me at an 'all you can eat'...all the rules go out the window!) and in very limited quantities.

The foods that I cannot eat I either chew and spit (pineapple, watermelon...) or put in the blender or mash...over cooking can be useful for some (green beens, artichokes, asperagus) but others just need to get pounded before I swallow them...certain salads like me, others do not...Again trial and error so I try, very hard to stick to the 'moderation in everything, including moderation'.

Yesterday I had coconut macaroons which tend to plug my pouch up nicely...I at only 1 very slowly (less calories that way too). No problem today.

The food separation comes from a very old science that was updated and popularized by the book 'fit for life'...it was a revalation for me because it offered me answers to certain questions and gave me rules that worked for me and my pouch...but may not work the same way for you.

I am not strict any longer but really should be...I was so much stronger and healthier when I stuck to the rules (then again I was also 15yrs younger)...but I generally do follow the principals.

So there you have it...no hard and fast rules and obligations but more some soft guidelines for life with a pouch.

Sharon