you might want to testa bag out so you know what to expect - I did and it was helpful ...also tested the adhesives etc... so much easier if you know what to expect and what to do
Stay positive in all your thinking, relax and know that you are giving yourself the chance to live and be free again of your problems. May you have a safe and easy time of it -- and don't over do....

Hello; Sorry to hear about the issues. My usual advice is to try liquid Imodium (loperamide) up to 2 to 4mg a half an hour prior to meals and at night. You can add lomotil to this at the same dose range.
A more satisfactory way might be to eat strategically...doing most of your eating when you are at home.
I am assuming that you have an ileorectal anastomosis. Bowel function after IRA is usually better than what you describe leading me to susp…Read more

I have a j-pouch and had the same issue with lomotil, I'd need to take more to have the same affect. What ended up helping me is taking probiotics - give your digestive system more bacteria to break down your food and slow down your food digestion. It's not an overnight cure, it took me a month or so to greatly reduce lomotil. I take only a few a week depending on what I eat. I also eat foods that 'feed' my bacteria like fermented foods - kim…Read more

I have a J-Pouch since 2017 and I cannot take any of the recommended meds because I have a terrible reaction to codeine or anything related to it. So in my case, I have to control my bowel with probiotic and foods. I had to start with the BRAT diet and then work my way toward other foods. I found that if I increase my fiber (don't over due it), it makes a big difference. And over time, I have found what works and what doesn't for me; everyo…Read more

Hello Nic
You are absolutely amazing . Thanks for sharing your story and pictures you look so awsome. I am inspired by you.
Thank you🙋‍♀️❤🌹👏👏👏👏👏💪👊👍👍✌

You're doing awesome!!

You're awesome, you're inspiring, you give meaning to the lives and work of those of us who work with kids and young adults with FAP, stay strong

Thank you for sharing this, Nick. I'm going to share this with my 13 year old son and 18 year old daughter that have FAP and feel like nobody (outside of family) knows what they're going through. Thank you for honestly sharing your journey, through the ups and downs. You're an inspiration! Hope you have continued healing. 🙂

There are some great resources re: diet right on this platform! I did a quick global search (magnifying glass on the left navigation bar and the term "diet") and found several: https://www.fapvoice.com/rcuratenew/foods-ok-eat-j-pouch-surgery/

Since you tolerate meat, poultry can be cut up into small sizes that would be easy to eat on the go and be alright without being warmed up. There's pouches/cans of tuna, some even flavored that would be quick. Deli meat. Hard boiled eggs, egg salad sandwiches, tuna/chicken salad by itself or as a sandwich, baked egg cups, frittata, peanut butter

You are nothing but brave. Unfortunately bullying is all too common, especially in Middle School. We conducted a survey among FAP'ers about bullying and found, among other things, that FAP'ers are resilient and the vast majority found a way to handle the bullying. You are smart to be aware of it. Be sure to tell a trusted adult if it is happening as soon as it does happen.

One of the good things about this surgery and having an ostomy is that no one really needs to know unless you tell them.

Hi lily! My names Nick. I went through something very similar to you. I was the same as you finding a website like this to ask questions on. The really great part about the type of surgeries your having is that when it’s all done you can walk around with everyone else and nobody will know your different unless you want them too. And when you find people you do want to tell, they will be so understanding for you. Going into something so big and …Read more

I was 9 when I had my first surgery. I had an ileostomy for 6 years before having it reversed when I was 15. No one at school was able to tell that I had an ileostomy or a reversal unless I told them. My parents worked with my school counselor to allow me accommodations for restroom access whenever needed and I was able to go to a private bathroom where I could keep supplies and could change my ostomy there if needed. It's scary but I'm sure it…Read more

Hello Lily
No one needs to know about your health issues but your teachers which they should not say it to the students. Don't be scared your confidence will bring you thru and you are not alone.
We love you and you can do this❤👊💪👏👏🌹

Everyone's different. I had stomach pain before my surgery but it was because I was pre-ulcerous. I didn't have stomach pain again until I had my reversal 6 years later. Now I have chronic stomach pain, worsened when I eat or drink, due to my adhesions.

Ok thanks.
Sorry 😟

I had my surgeries (colostomy bag for 8 wks and now a j-pouch) when I was 18. I had horrible abdominal pain since I was 9, sometimes stabbing pains or digestive cramps often, I learned to play sports while in pain because I was told I was lactose intolerant. Yep, that was my doctor's reasoning. After surgery and a couple years of healing my abdominal pain minimized drastically. I was told I had a desmoid tumor that restricted food passing throu…Read more