You might have him stick to protein, rice, and oatmeal to thicken things up. Is he taking imodium or lomotil to slow things down? Have you tried metamucil wafers for bulking stool? Some feel there is more of a benefit from the wafers than the powders. How far out from surgery is he?

Sue

It will be four week july 27 since surgery. He takes four times a day immodium and questran light two times with meals. He is on diapers and he feels urge to go after he eats. He eats smalll portions but he a picky eater since baby and i dont know what tongive him. He will not eat the wafers i know but i will try since he so depress and wanna go back to normal. Im so sad him sayin things like he wanna die. Breaks a mothers heart.

so sorry to hear that! i am in my thirties and said the same thing to my mom and she was very upset. so even at my age it is difficult and emotionally taxing. i am new to the j-pouch (had one for 5 weeks), but it slowly got better for me. the first 1 week i was incontinent. what did the doctor say? i was going 25x/day then the doctor fixed a stricture i had, and it reduced me to 12x/day. the wafers taste good and help bulking. does he like potatoes in any form? bread? pasta? peanut butter, rice, apple sauce? chicken, meat? hope he feels better soon.

My son loves mashed potatoes and white rice. Doctor just said nothing with milk or sugars. He eats grilled chicken. Red meat gives him pain. Some days he goes 20x and other like 12. Sonit varies and idk whats goin on cause i give him all his meds and last night he was crying cause so many bowel movements n showers. I gave him twonimmodium before bed.

maybe he can have 6 small meals spread out over the day. some days my frequency is double, even though i ate the same thing! the pouch can be tempermental at first while it figures its new job. i try to remind myself to keep my mind on other things: movies, word/computer games, chatting, walking outside for fresh air. maybe also try some fish, that is light. 20x seems a bit high if he is taking immodium and meds. what is the volume? a lot each time? or sometimes just gas and a lil stool? that happens to me too. try holding the urge to go every time, so the pouch expands and frequency goes down a bit. maybe uncomfortable at first, but if he can hold for 15-30 minutes extra it might help. i drink rice or almond milk with rice cereal. he could try something like that later if he wants. oatmeal too. is he walking? that helps the entire digestive tract.

He always in bed. Bad buttburn so he only walk to bathroom . I do diaper change and bath and back to bed. He cant sit long periods. He tries to play his xbox. Lasts like 1 hour here and there during day or night . Bad days its like 20 diapers and yes most of the times he goes pretty frequent its little stool. Big ones are mushy and he tries to hold it but he says he dont even feels when it comes out. So most goes to diaper. I didnt know by holding pouch expanded. So much idk. His dad pouch got burned by radiation. It didnt work so he has permanent ileostomy. So we dont know how to help my son go less.

Can you take him out of the diapers? I'm thinking he would do better if he got more air to his bottom. He might have accidents in his underwear but it should make him better at holding it before going too. Do you have any bed pads like they use at the hospitals? There are disposable ones too in the adult diaper area. Put those under him on the bed in case he leaks or use a big beach towel. Also if he feels like it let him just wear a big adult T-shirt and no underwear. The air will really help with the butt burn, along with the baths and creams. I use calmoseptine for my butt burn.

Does your son have food allergies? If not I don't understand the no milk at all thing. He should be able to have enough to make mashed potatoes with or put in oatmeal. Chicken and turkey is going to be better than beef and pork. Have you tried getting deli turkey or chicken to make sandwiches with? Bagel's are great for making things thicker. Nice white deli rolls or submarines would be good too. I don't understand why no cheese if he doesn't have a milk allergy. I can see why he wouldn't want him to eat just cheese but kids like string cheese as it's fun to eat and good for him.

Campbell's plain chicken noodle soup with saltine crackers are good too. He can eat the salt. I think there is a similar soup with o's. I hope he is keeping hydrated, are you giving him sports drinks? The best don't have sugar and food coloring. When my son was his age and got ill he loved to drink Tang. I don't even know if they make it any more. There are dry mixes for Chrystal Lite and store brands of vitamin and other waters.

Also I know he said no sugar but a Popsicle or two would be a treat. Also maybe plain cookies like vanilla wafers or gram crackers. You could make banana pudding with a vanilla pudding mix and layer it with vanilla wafers, sliced bananas and the pudding on top. You can also put a topping on it but leave it off to cut down on sugar. Of course pudding has milk and sugar in it.

His doctor sure isn't making it easy is he? Maybe you could call and run some of our suggestions past him.

Bananas, Rice, Applesauce and Toast = the BRAT diet is what I've always been told is safe to put sick people on.

Some people even eat baby food but I doubt he would like it if he's a picky eater.

I hope some of our suggestions help. Poor little guy, this is horrible for him and you to be going through. He will feel better. There is a recent post on here that a lady put up of her son one year after his surgeries. He is on the swim team and won a big race at 10 or 11 years old.

Surgeon and GI both gave me different stories. Surgeon said eat all u want but hold on with cheese ,milk and sugar stuff cause that triggers my son to loose stools even before surgery it happened. Nutritionist said lets put him on low residue diet. My son is scared of eating. He ask me last nite for a cookie and i gave it to him and a minute after he runs to bathroom. He didnt eat after 7 and cookie was around 11. He went to bathroom 20 times yesterday. He so tired. Today ive done 3 changes so far. Gave him 2 boil eggs and a toast with butter. Two immodium and his questran light drink. And yes he drinks a lot cause he on questran light which is a drink to collect the bile so his stools dont carry it and not burn his butt. His butt is raw. So he drinks that 8oz twice a day morning wih breakfast and with dinner. Between snacks he drinks metamucil orange with 8oz water like 3x a day. So he keep hydrated.and water of course he loves. Juices give him the runs now. Im gonna take diaper at end of 4th week which is next friday.

I am 3months post take down and I can tell you the bm's do get better. But I do occassionally get the BB , the best thing to do is get a bidet if at all possible. It is my lifesaver. If you can't get one or not right away make sure the poop is washed off his tush right away. Our poop is so acidy without a colon too many bm's can literally burn your skin. I am so sorry he is going thru this. At 52 I know I want to cry from the BB sometimes. As far as eating I would def. stick to a low residue diet right now for sure and add things in as time goes on. I would take the diaper off and just put a panty liner or pad in his underwear also. The diaper may keep the poop on his skin too long . I hope this helps. Prayers are with him and his family !!

For the acid he is drinking question light two times a day. So it burns less and let bottom heal. It's healing but now has yeast infection. Today I have only changed 5 diapers and it's 6pm. Everyday it's different. Hopefully it gets better. But I can't take diapers yet because he leaks and goes all over floor n rugs in bathroom. Our bathroom is small and we live in a building. Some bidet I can't buy or afford it. I did see a bidet seat that u attach to your toilet seat for $40. That I might give it a try cause he is prohibited to use toilet paper until he heals. Thanks for all the food alternatives you guys have given me as well.

definitely invest in a bidet if you can! a low-cost one will do... his tush will be thanking u

One thing both you and he need to know is that he will always have to use the bathroom after eating, but the urgency will lessen with time. The reason is due to peristalisis. It's common for all of us so don't allow him to fear this.. totally normal.

Sue

You can buy a hand held bidet bottle from Amazon.com for around $10. You put warm water in it, it has a long nozzle so you can aim it to to spray clean his bottom. It works better than regular bottles as you can get the force your need to clean his bottom. You might need to fill it a few times each time.

I bought a sprayer kit on-line for $50. It attaches to the water as it's going into the toilet and has a sprayer on the end so you can spray his bottom. It is room temperature water versus warm but it works well. It has been a life saver for me. My husband installed it in less than 10 minutes.

It sounds like he's doing better today.

Can you email links to the bidet you telling me about? Thanks sugarygal77@aim.com

http://www.diabetesandmore.com/Search.aspx?k=bidet

This link is to the bidet sprayer I bought for $40 plus $10 shipping. I love it!

He could have pouchitis. Some of us were honored with that privilege immediately after takedown. But as in my case, he could be left undiagnosed by his doctors. Please ask the doctors about pouchitis. He may need a scope and antibiotics.

Hi there,

I am so sorry to hear about your son. I know as someone who battled this in my late twenties, that it just isn't fair that your son has to do this at 9.

I have had a problemsome pouch. There have been some times that I was going that often, not eating and exhausted. Your son is probably dehydrated from the constant trips to the bathroom. It may be time to take him back to the hospital. Everytime I felt got that bad and I saw my GI or surgeon, they yelled at me for not going in sooner. Your son may have pouchitis and a course of IV antibiotics may greatly help. He probably needs fluids as well.

I am just thinking of the fastest way to get him onto the road to recovery. In the hospital they could do all the things at once. You both sound beyond the point of miserable and I think you really should consider a trip to the ER.

I wish you and your brave boy lots of health and peace.

yes I agree with tammykath. its time to get him back to the hospital. If you contact his surgeon they can probably do a "direct admit" into the hospital. That way he won't be shufffled through the ER where most docs don't know anything about a jpouch. Also it will alleviate sitting around waiting in the ER.

My son surgeon has seen him every week since he was discharged. Been following up on a bad buttburn and yeast infection. But my son is well hydrated thank god and they chexk his blood and everything to make sure he is ok. Cause he has anemia .

Thanks for the post, I've been worrying about you two and everyone else in your house!

Protein and the good things to help heal his insides are what he needs so maybe you should get him some Ensure or related diet supplements. They are drinks that are a lot like meal replacements. I don't know if they have specific ones for children. They come in flavors like Chocolate and taste best if really cold.

Please try something like this and if not sure ask your surgeons nurse. I hope you and your son have been able to get some rest.

Yes hospital gave us a case . He dont like milky stuff. He can be lactose intolerant. We dont know yet. But he is eating and we been sleeping late but we rest most durig day. Thank you so much for worrying.

I don't think it tastes to well as the nurses had us mixing it with ice cream and pudding for my dad. If you son is lactose intolerant those ideas won't help either.

I use a hypoallergenic plant protein powder almost daily that has great nutrients. I mix it with fruits or peanut butter and always put in a banana, as I like them and they are good for you. It supplies 42% of the daily required protein for an adult and is great for our cells. It is called PlantFusion. If you go to their website and key in your zip code it will tell you where it is for retail sale in your area. You can also buy it on Amazon. My nutritionist put me on it. No milk, nuts, soy, gluten or any thing else people are allergic to. It comes in different flavors like vanilla and chocolate. I mix it up with whatever I like in the blender with ice and coconut water. You don't need the coconut water but it is great for hydration.

Just another suggestion. It has to be hard and I know you don't have the time to run around shopping!

Hang in there

Amazon is my fave. Thanks

Has his surgeon truly ruled out pouchitis? Did he do a scope? Just saying... as my surgeon blew me off with these kind of symptoms after surgery. I ended up back at my GI who immediately did a scope and told me I had pouchitis.
And yes,.. try to stick to the thickening up foods. Try to get the transit time slowed down.

Well last week i mention symptoms and he said my son aint having cramps or pain. He farts fine and poop is mushy. So he is good.

I am one month out from the j-pouch take down and I agree with your son. There are days when the butt burn is so bad I am afraid to eat.
On those days, I stick with a liquid only diet--mainly Ensure Protein Plus Vanilla. There is also a lactose free version. The case you have may be lactose free. If it is, it will say so on each bottle. It looks milky but does not contain any dairy product.
Chocolate, sugars, fats, dairy products, red meat and gluten products go right through me with a very high acid content. The rest of the time I eat a low residue diet. You can find a good description at mayoclinic.com.
My breakfasts include gluten free waffles, gluten free potato pancakes with applesauce, oatmeal, soft boiled eggs, or gluten-free french toast.
Lunch is usually soup with a very simple half sandwich--ham and cheese, peanut butter and jelly, tuna fish, etc. No spices or mustard.
Dinner is tough. I do fine with roast, poached or broiled chicken and fish without sauces. White rice and a limited amount of potatoes is ok. Pasta Carbonara without ham is ok. Fried rice with chicken and vegetables is ok. Carrots, spaghetti squash, zucchini without the skin, and peas are ok. Gluten free pizza is not ok. I think the fat in the cheese is too much right now.
People tell me the food problems are temporary and that what I can eat will expand over time.
Desserts: Jello, sorbet, gluten-free cookies, sliced bananas with a dab of peanut butter, seedless watermelon. I am not a big dessert eater.
Other things that helped are a 1/2 dose of Questran twice a day and Immodium before eating every meal. If I have an acid or upset stomach, Pepto Bismal helps. I clean with Balneol on tp. It neutralizes acids and coats the skin with a mild protectant. This works better for me than our bidet seat or Pamper wipes which left me a little raw.
Finally, I put Calmoseptine on a small gauze pad and leave it on the effected area. That gives immediate relief from the pain. I take a vicodan before exercising because exercising is really important to getting the digestive system to work well. I walk and lift light weights. On a really bad day 2 cups of epsom salts in a bath is heavenly.
Rectal exercises helped my continence. Imagine clenching and releasing a pebble in the rectal canal. I do about 60 a day. Every now and then continence is still based on how fast I can run.
What works for me may not be what works for your son. It will take time and a lot of experimenting to find what works best for him.
My heart goes out to you and your son. Please let him know he is not alone and what he is going through is not uncommon. This may make him laugh. Another name for butt burn is Monkey Butt. There is even a Monkey Butt Powder sold in a lot of equestrian magazines and Ace Hardware stores. The monkey logo has a giant sore, red bottom.