Hi, i am pretty new around here. I've been reading things but never wrote anything. So, last August, i was diagnosed with FAP very much likely to become cancer. Had this 3 cm long polyp in my rectum and lots of little ones all around my colon. (its from my dad, sadly he, my aunt and grandma died because of it.)
First, i had radiotherapy and chemo, because of the position of the big polyp. Then my surgeon told me he was gonna try j-pouch, with 2 steps. I had my first surgery on 20th of November last year, waited for 2.5 months with loop ileo and had my 2nd surgery on 2nd of february this year.
My time with ileo was terrible, because after surgery I almost lost 8 kgs and I was already really thin for my age (now  35 kgs.) . And because of thinness, it was impossible for the bag to stay put, i had to change it almost every 2 days. And even i changed pretty often, i always had itchiness and burning on my skin...
So i was pretty excited for my j-pouch but also very much scared of it. So after 3 months, i want to ask you stuff that bothers me. I really hope you answer me

1, sometimes i really can't stop the leakage(like a lot leakage) , even in daylight, in class or in home it does not matter... And it really makes me feel bad because of the smell, sometimes noise and of course because of the disaster on my clothes. So will it stop? I really want it to not happen.

2, what can i do for unstoppable diarrhea?? sometimes it just goes on and on for days whatever i do... i am taking lomotil 3x2 in a day, sometimes take 3 before sleep but not always working..

3, also what can i do to gain weight? I went to a dietician, nothing works, maybe you can tell me from your experiences

Also i know it's not the same for everyone but i am open to every suggestion for try.

Thank you, if you ever take time and answer, also i am not in US so i have no access a lot of stuff, sorry...

Original Post

First of all, I'm sorry you are going through all this.  I wish I had a magic wand and could take it all away.  All I have is some advise that may or may not be useful to you.

Have you talked to your doctor about the chance you have pouchitis? Leaking is my one of the signals when I have  it.  If so a simple course of Cipro or Flagal should help.

That being said,  here are a few things to try that have helped me with the diarrhea: Add some thickening foods like Oatmeal, rice, cheese, potatoes, bananas, etc. Add some fiber.  Many here use psyllium or Benefiber.  It may sound counter-intuitive, but they really work to thicken up the stool. (I used psyllium in a smoothie to avoid the taste.) Remember to go slow when adding the fiber to keep gas from being an issue.  (or take Benefiber when you take the fiber supplement.)  

When I  struggled with leakage, I wore the long sanitary napkins.  They helped keep my clothes from getting messy and had more pad to soak things up with. At night I put one of those waterproof pads under me so I didn't have to wash sheets quite as often.  (And yeah, I did where Depends to bed when the leakage was really bad.)

 Hope this helps some!

Well it seems normal for a new pouch, don't worry too much about it. The pouch pretty much settles after 8months to a year. Everyone's different , some people get going with weeks others like us take months. 

I was down to 42kgs post 2nd operation and I am at 58kgs now in around 9 months post takedown. I workout almost daily , weight training mostly and trekking on a sunday. Eat more bulking foods and food high in protein. I eat upto 6eggs now ( 4 whites and 2 whole). You can start from 3 and see how well you can tolerate them. Use pysillium husk to absorb extra water. It takes some time to adjust to it , initial gas pain and increased urges are normal , it will help in increasing your pouch's capacity to hold back. Eat food high in good calories like peanut butter, brown bread , olive oil , chicken breasts, fish, butter, yoghurt and milk ( if you're ok with lactose).  Stay away from too much processed sugars or sugar altogether and chocolates can sometimes cause loose motions so I rarely eat them now. Fresh salads and fruits can cause diaroehha. Basically add one food a day and see how you feel . If it doesn't bother throughout the day you can add it your list.

Bananas have been my go to food on a rough day. I eat like 7-8 bananas throughout the day I get loose stools and most likely it self heals within a day.

I find that exercising has helped me alot . Supplement whey and see how well you can do with it, you can also try vegan protein . Creatine , some Vit C and zinc tabs and fish oil daily helps too.

I second the suggestion of trying bulk-forming foods and eliminating anything with a lot of fiber. Seriously try for an entire week to just eat bananas, rice, white bread, skinned potatoes, puddings, etc., and see if it helps. You should notice a difference pretty quick. Metamucil 2-3X/day can thicken things up and might help with leakage. Have you tried a lot fo dietary changes? Sorry if you have and we are suggesting the obvious. Also, drinking high-calorie Boost with each meal might help with weight gain, as well as protein drinks if you can afford them. What does your doctor say? There are prescription medications that can slow things down if ammonium isn't working. Hope you are perking up soon and wish you the best-it does get better!

Just to add about the psyllium. We aren't to take it with the glass of water as the directions say. The best way I found was to mix a dose in with a little bit of applesauce. 

After my surgery the surgeon scheduled out the use of both Imodium and Metamucil (psyllium.)

I'd spread out the Imodium doses to 3 times a day. I think you can also take up to 7 per day. More than 7 won't kill you but it won't provide you with more benefits.

I know it's difficult to maintain weight after the surgeries.  There are a lot of good suggestions above.  I like the egg one. (I'd eat ice cream but your j-pouch might not like the sugar and I don't recall it causing problems for me.)  I also was told to eat marshmallows and they are likely pure sugar. 

Can you get Metamucil where you live? The "smooth" variety is the best.

Metamucil is psyllium husk fibre. You can buy it in packets, but I found that only the smooth variety (finely ground) from Metamucil brand worked.

I found it really helped to thicken up the output and prevent leakage. Once I started taking it, my j-pouch function became manageable. Without Metamucil, I couldn't have lived with a j-pouch!

You want to take it with a minimal amount of water – just enough to mix it up so you can swallow it. (Glug it down quickly after mixing, because it will get very thick after about 30 seconds and then you'll have to throw it away and mix up some more.)

Take it just before eating any substantial snack or meal, especially anything with fibre e.g. fruit, vegies. By "just before" I mean a few seconds before you start eating.

 

Here's how I managed it:

Carry Metamucil around AT ALL TIMES in a Japanese tea canister. These have two lids, one inside the other. (Metamucil is a fine powder and it likes to escape in your bag and make a mess.) If you can't get one of those, a small plastic container with a tight-fitting lid sealed in a ziplock bag works too.

Carry a couple of small disposable paper cups (mini size, like espresso take-away cups) and a teaspoon. You may also need to carry a small bottle of water, depending how easy it is to get access to water where you are going.

Just before you eat, put about 50 ml of water into the disposable cup, quickly and thoroughly mix in a generous heaped teaspoon of Metamucil powder, and gulp it down immediately.

You can probably do all this on your lap, or at least without anyone noticing. If I was eating with someone in a restaurant I would say "I just have to take some medicine before eating". Often people didn't even notice.

The reason for the disposable cups is that if you mix the Metamucil in the restaurant's drinking glass, it will be have orange goo in it, which is hard for the restaurant to wash off, and the waitstaff will think that you have gotten a dirty glass. Also, the waitstaff often bring you a full glass (no use, you need only about 50 ml of water or it won't work) or a glass with ice in it (also no use) or they pop up and helpfully refill your glass just when you got it down to 50 ml. D'oh!

(You can of course tip some water from the restaurant glass into your disposable cup if you are in a place that gives customers water.)

Once you have glugged down your "stiff drink" of Metamucil, you can slip the used disposable cup into your bag (have a spare ziplock bag ready for this) or you can throw it away in the restaurant loos later.

Start eating straight away.

Thank you everyone, sorry I couldn't write before it was a busy week at school. I tried oatmeal and it really is working, also bananas, rice and patatoes was already in my diet. I eat them almost all the time. Also i will get metamucil as soon as possible. 

Leakage is really the worst, i am wearing adult diapers when i feel it is going to happen, but still it is bad, also smells really bad. I will go see my doctor next week, his only available day is next friday... 

So thank you all, i hope you all have good time with your pouch.

Just writing to say I echo all the good advice above about dietary changes and looking into the possibility of pouchitis. (I take Cipro constantly for it.). Also want to add that codeine sulfate helped me slow things down much more than Lomotil or Imodium. Lastly, regarding your weight, a diet high in protein and quality carbs/fats helps, but time will too. Your gut is still adapting to its new setup. It took me about 9 months of trying then, out of nowhere, I just started gaining weight. At first it was nice to finally no have to worry about it, and now I am trying not to gain too much! Wishing you well, Jennifer

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