need advice asap

Archer,
I am so sorry that this is not turning out the way that you had expected. It is not a perfect science...some, very lucky people, get their pouches done and never look back once while others have to live with constant problems, complications and difficulties.
I underdstand the fear of eating although I have never gone as far as anorexia I have often stopped eating out of fear. (I have a k pouch so it is linked to the difficulties in intubating (at home or in public places) that scared me away from food).
Food is very scary when you have a testy pouch.
I am going to be open with you here...how do you want things to 'come out' and how does that differ from what is happening to you now?
What is the exact problem? Is the stool liquidy & gassy or pasty and difficult to evacuate?
Are you suffering from cramping or spasms? Are you bloated? (swollen).
A lot of people on this site have been able to 'control' the output by controlling the input without stopping food. Do you keep a food journal?
My 1st suggestion would be to start a food journal and to see what foods upset your pouch. It is great that they have found that you are lactose intollerant, it is a wonderful start but not the end of the experiment. Write down what you eat, when you eat it, what you drink with it (or in between) and the way it is cooked (frying can be a problem for some).
After a while you will notice patterns. Things that upset you or make your pouch work really well.
I have found that for my pouch it is chicken or fish and nut butters (peanut, almond...) overcooked green veggies (green beans...) and some limited salads.
I also do really well with diet protien shakes (sugar-free, lactose free), bananas and most no-fiberous fruits.
My pouch hates 'Whites'. White flour, sugar, milk etc but like whole grain breads.
Look up the Paleo diet and other similar diets. If you are good at restricting food then you may be very quickly successful doing a very restrictive diet like Paleo (a lot of animal protiens(meat, fish, chicken...), some roots (potatoes...), nuts & seeds, very few grains and no diary if I am not wrong (I can be wrong!).
Lots of people here have been having success with a modified version of this and have taken control of their pouch functions that way.
Hope that this helps you
Sharon

It's pasty and doesn't seem to want to come out. It's crazy because my first 2 years after surgery I had to take 6 imodium a day to keep it under control. But its like the opposite now. I have eliminated so many foods. It's the opposite with me. My system does better with white foods, pasta, white bread and rice. Whey protein doesn't do well with me. Whole eggs don't do well. Egg whites are good, some lactaid cheese, lactose free milk and ice does good. Chicken is good, most proteins are except steak, takes forever for that to digest. Any kind of fruits and vegetables comes out the way it goes down. It seems like my body doesn't digest things fully. I guess that what the colon used to do. So anything I eat with seeds, skins, fiber foods, comes out undigested. I know it's always gonna be trial and error with me. Thanks for the advice.
Archer

Archer,
As years go by the small intestine and pouch start taking over some of the functions of the colon (which essentially absorbs water and a few nutrients but most of the digestion/absorbtion takes place in the stomach (the largest part of the digestive process and the absorbtion of alcohol, sugars and certain meds/micronutrients) and small bowel (which the pouch is made out of and absorbs the rest of the nutriton).
Whey powder is from milk so that explains why you might have problems with it. Being that your gut is shorter than the rest of the world's, yes...things go through you faster. But now that you absorb more liquids the stool is pastier. Try loosening it up with more fluids. Put your fruits & veggies in a blender if you need to.
Mashed veggies (not just potatoes) work well.
Keep experimenting and you will find the perfect mix.
Sharon

Thank you for your help. I will try homemade smoothies to see if that'll help with digestion. Which kind of fruits and vegetables in a smoothie would work best? It's been years since I've had fruit.

In addition, please do not avoid fruits and vegetables because they look undigested when they come out. Without a colon, that is normal. Your small intestine will still get the nutrients your body needs. I am surprised no one told you that. Unless, you cannot pass the pieces of fruits and vegetables, you should not need to puree them, unless you prefer them that way.

Whole fruits and vegetables provide necessary roughage and bulk to keep things moving.

Also, people here and their doctors are finding that the processed carb focused diet is not a good one for the pouch in the long run, because it promotes bacterial overgrowth and pouchitis. If you can tolerate it, a protein and fruit/vegetable focused diet is proving to promote better pouch health and function.

One more thing. Be sure to alter your diet gradually, or your gut will definitely rebel!

Hope you get back on track soon so you can enjoy college life!

Jan

No one told me anything afterwards. I'm going into year 4 and still trying to figure out what works and doesn't. I didn't know about the carbs either. My diet has been pretty much all carbs and protein and some dairy. I have had bacteria in my gut. They found that out when I was in the hospital. Maybe that could be it. I'll start incorporating fruits and vegetables. I used to eat those all the time before surgery.

You are in good company, Archer! Most doctors simply focus on taking care of the acute problem, leaving you on your own to figure out long term maintenance. What you need during acute pouchitis or the post op period is nothing like what is needed long term.

People get stuck on the rice/pasta/bread train because it worked so well after surgery. But, it is not designed to sustain good health over the years. Your body needs variety to stay healthy, especially during those rapid growth years of teenage and young adulthood in men.

Don't be afraid of seeing what appears to be undigested food in the toilet. Even if it is not fully digested, it is not hurting you. That is of course, unless it does cause pain.

I had my surgery in 1995 and fruits and vegetables still appear in my toilet. But, I have trouble keeping weight off! A constant battle for me!!

Jan

Thanks again. Your right about the bread train. Even my mom is so obsessed over bread and carbs. At every meal she makes me eat bread because of what my surgeon said years ago. We just got out of wal mart and I got some bananas, peaches, and nectarines, tomatoes, i'll start with that and see how it goes. What about the skins on them? Are they ok to eat? I struggle with keeping weight on as you read I lost so much so fast. I don't look my age and I hate being told that. Everyone tells me I look 15. I always think to myself, if you only know what i've been through. Delayed puberty doesn't help things either.

Introduce only one new thing at a time, at least at first. Skins should be OK, but chew well and small portions while you test. If you are sensitive to acid, leave the tomato for last.

I guess I was lucky because they had me on a regular diet before I was discharged from surgey. From there, it was just trial qnd error.

Jan

I have my j-pouch for 4 years. I am also having problems with food. It has taken me a long time to figure out what foods to eat . I am still having problems. It is true that the doctors do not give you enough info on what to expect. I struggle with vegies also. I started putting vegetables in my lactose free protein drink about a year ago I stay away from any gassy vegetable. I

I must have hit the wrong button I wasn't finished telling you my story. I did one vegetable at a time to see how I would tolerate it. The next week a would add another. I find putting organic carrots, baby spinach and green apple, banana, coconut water sometimes almond milk in the drink. I also have problems with constipation. I have been dilated 4 times and going in for another I hope this is the last. I also have problem gaining weight because I always feel bloated after eating anything. I do take one lomotil and one flagyl antibiotic every day because of pouchitis. If I don't take the lomotil I feel pain in my pouch and butt. There are days that I just have pain and I just can't figure out why. My diet pretty much stays the same. I don't eat tomatoes or anything that is acidy that would create any burning. I have been reading the posts and it seems that most of you are doing very well and that is great. But I feel for those of you that have problems like I do. I keeping trying and hoping that it gets better. I love reading every ones post because it gives me more info so thanks to all of you

Seems like we have some things in common. I'll try to add fruits in my diet. Been keeping it pretty bland the past few months. Mainly carbs carbs and more carbs. No fruits or vegetables. I have a very sensative stomach. Things come out the way they came in. Yogurt, pudding, don't agree. Just found that out. I guess too thick? Hopefully I can get this food thing down before I go to college in 2 months. I want to start working out once I am there. To bulk up a lot! I want to put on 15lbs of solid muscle mass my 1st year there. Might even get a personal trainer to make sure I obtain that. I've always wanted to look bigger and stronger. My goal weight for when I graduate is 150lbs. That's 50lbs in 4 years. Anyone else workout and can give me advice?
Archer