My question is whether or not other families plan their dinners as snack time rather than just having dinner. I'm thinking of having a late afternoon snack and an evening snack that the family has together to help support my poor hubby that cannot enjoy a full meal with us any longer.

Any insight into how other families cope with supporting their family member that is going through post j-pouch adjustment is appreciated.

-Michelle
Wife of j-poucher for 15 months

"For better or for worse, in sickness and in health...no truer words have been spoken..."

I guess I don't get it. My husband has had a j-pouch for over a year now, and he eats full meals. What exactly is preventing your husband from eating full meals? Does he just get full or does his pouch get full? When hubby got his j-pouch, he was told that he had to stretch out his pouch, so he was suppose "hold it" for a little while before emptying it. That seemed to work.

I'm glad you're being a supportive wife

My hubby's butt remains in a severely burned state. He has not had a pain-free day in months. Something must be terribly wrong with his j-pouch, diet or medincines if your husband is able to function like a fairly normal human being. WOuld you mind telling me how old your husband is, what he "normally" eats and what meds he uses on a daily basis? I don't think we slept 3 hours last night...it's been so bad for so long, but he continues to have hope that it will get better. I just have to figure out how.

Thank you,
Michelle

My husband is 32 and he had takedown May of 2009. I think he takes 2 imodium and 2 chewable benefiber pills with every meal. He also takes 1 chewable vitamin every day and he also takes a B12 vitamin. Every time he goes to the bathroom, he uses desitin (the diaper rash cream). He keeps a small 1 oz tube in his pocket, so he can apply it while at work. The desitin really prevents the butt burn for him, however he has to use it EVERY time he goes #2. This is TMI, but he even applies it to the inside of the opening a bit too. Although when he has diarrhea he gets butt burn regardless. In the beginning he had to use a lot of cream to get it under control, but now he just uses a very small amount. He also uses the "tucks" wipes occasionally, and sometimes hydrocordisone cream if he has a lot of itching.

For his diet, he can basically eat anything, as long as he doesn't swallow it whole (he learned that the hard way). He's found that caffeine gives him stomach pains & diarrhea, so he doesn't drink it anymore. But he can really eat or drink anything else. Also he does drink a lot of gatorade to stay hydrated.

What meds does your husband take? What has he tried for the butt burn? Does all food give him problems? Or just certain things?

Meesh,
You and husband need to get back to see your GI and discuss this. Constant BB should not be an expectation from j-pouch surgery, no matter what you eat. I was fairly old (47) when I got my pouch in Feb 2007, and yes, it took some time to figure out my diet, and that has changed over time. I can today eat stuff I could not tolerate 2 years ago. You can read all the advice here about creams, wipes etc., (I use Calmoseptine when needed). One thing that helped me the most was that I take one generic Prilo-sec (omeprazole) once a day to reduce my stomach acid. That helps the BB a lot more than any bile acid related meds.

Continue to communicate here as well. Advice will come in droves from lots of use who share your situation, but as I said, I think this bears some medical assessment to see what's what with your husbands poor (in my opinion) outcome.

Cheers,

Mark

This is all great information, thank you both very much. We've been trying to add foods to my husband's diet that fall into the "alkeline" category instead of the "acid" producing category. All the rice, potatoes, cheese, eggs and bread produce acid, so we've been trying fruits and veggies to see what happens. So far, the actual "burning' has subsided, but he is still taking too many BMs for his poor butt area to heal, so it's still a bloody mess.

Here is his typical daily meds:
2 lomotils and 1 benetyl per meal (3xday), 10mg prednisone (1xday) and then anywhere from 4 to 8 percocet daily for butt pain only. So what do you think of that combo?

Literally, if we could get rid of the butt burn, life would be so wonderful. But we still can't figure out what to focus on: 1) j-pouch construction 2) diet or 3) medicines.

My hubby reads this j-pouch site daily at ANY hour of the day or night. It has been the ONLY thing that has really kept his spirits up. Thank GOD for whomever started this!!!!

Thank you - Michelle

Has he tried taking immodium or fiber? That could work. If he tries the fiber, definitely get chewable tablets. My husband likes the benefiber chewables. I think you need to get the number of BMs under control and then the butt burn will heal itself. To do that, I think it's just a combination of the right medicine along with avoiding foods that don't agree with him. If that doesn't work, I would go back to your doctor. Do you think he could have pouchitis? I googled it and here are the symptoms: diarrhea, abdominal pain, bleeding, fever, joint pain and increased stool frequency. It'd be something to look into.

quote:

Has he tried taking immodium or fiber? That could work. If he tries the fiber, definitely get chewable tablets. My husband likes the benefiber chewables. I think you need to get the number of BMs under control and then the butt burn will heal itself. To do that, I think it's just a combination of the right medicine along with avoiding foods that don't agree with him. If that doesn't work, I would go back to your doctor. Do you think he could have pouchitis? I googled it and here are the symptoms: diarrhea, abdominal pain, bleeding, fever, joint pain and increased stool frequency. It'd be something to look into.

I agree with BLECCE. My hubby's one and only severe experience with butt burn was related to a pouchitis inflamation. Once it was dealt with, the butt burn healed very quickly. Perhaps a visit to the Dr. will help to rectify this.

You don't say how long your husband has had the pouch - I can only hope that the number of BM's will improve with time. Good luck and good health to you both.

metamucial helps the burn for me

A blow dryer...unless your hubby is a nudist...then he should be exposing his tender burnt buttocks to direct sunlight...(you may prefer a very secluded spot for this...nojoke... Clean and dry the area, then either use a non professional blow dryer on low (not the high heat setting!) and make sure that all of the skin in the area is perfectly dry...leave it dry and exposed as long as possible each day...(laying on his stomach to watch tv...)then choose one cream that you find effective and stick to it...it takes about 3days to feel the difference...My dad used to make me do this all of the time when I was a kid and permanently incontinent with the worst diareah in history...5yrs of it...saved by the blow dryer!
Dad used to use talc on me too...(you may try the kind that they use for athlete's foot...in case you are having a yeast problem)
Sharon

Sun is very good for healing. I agree. When my loop ileo would not behave for anything I'd just take everything off and plant him in the sun for a bit.

kathy

Meesh,
To answer your original question...how do we plan meals etc...my hubby gets home very late from work, usually around 8:15pm which is really late for me and my pouch...especially if I wish to sleep through the night...so I usually have a 1/2 meal around 6pm when I am hungry and then eat only soup or a protien and green veggie at 8:30 with him...he hates that we don't share full meals together and I hate it when I can't sleep so the compromise is that I move tons of food around on my plate and pretend...when we have the kids over I spend a lot of time in the kitchen 'doing stuff' while they eat and then join them for the meat and green veggie...I then drink tons of tea and skip dessert so that I am at least busy at the table..my friends are used to my way of eating by now and nobody but hubby notices anymore.
Sharon

According to me its not important to plan either snacks of dinner, the point that matters is one should plan at least one meal of the day with all family members.