Frustration and Acceptance

Hi Valen,

I can so relate to this post!

I spent the entire week of thanksgiving with extended family on vacation. It was horrific as I spent 24x7 in the bathroom.

i was so miserable and devastated from the experience. I vowed never again. I am way older than you, but my wife understands the situation and let’s me set my own rules of what I can eat and when. I try not to eat after 6 pm and I take loperamide 2-3 times per day to slow everything down and lessen the butt burn.

I actually welcome looser stools as it empties the pouch better for me.  

I am sure others will give more advice, but hang in there and you do you. You will figure out what works and does not work for you.

I am reluctantly accepting my new normal.

be well.

Hi Valen. Bravo for reaching out and asking for some understanding! It's hard when our loved ones can't understand our frustration. They love us, but they can't relate. It's terrific to have this community of people who understand this challenge that you're living to some degree.

Having a major health issue at such a young age really sucks. The silver lining is that it can make you more empathetic, patient, and understanding of people's challenges. Which can make you a terrific partner and friend. You have a gift. And you are so strong and resilient. When you feel frustrated about being limited, try to remember what an incredibly strong person you are.

And if that doesn't make you feel better, reach out for support here. We'll remind you what a badass you are. We all are. We are living life without an organ that's 5 feet long. It's not normal. It's not easy. But it's definitely badass. Hang in there, Valen! Good days and bad days... Try to enjoy your vacation as much as you can.

Hugs,

Kelley

Well said Kelly. Indeed you have really cut to core of the issue here.

When people ask me how I am feeling, I usually say good or very good. I tell them you will never hear me say great. When they ask why, I tell them that I am missing a body part. And just as you have stated, its just not normal. We can all compensate however we want with drugs, diet, supplements, life style changes… whatever. But this new normal will never be normal for me.

Hi Valen.  I know you wrote this message a while ago, but I think it is not too late to share with you some thoughts.  I’m a JPoucher since 2013.  Now I’m dealing with Crohn’s, frequent blockages, NG tubes, hospitalizations, watery diarrhea and many other not so happy situations.  

You are amazing! A though cookie! It is not easy to deal with things regarding IBS, pain, poop, diet and bathroom issues at such young age.  My advice for you is, try to take a deep breath,  relax, explain to your parents, siblings, or close friends any situation makes you feel unsafe, uncomfortable, anxious.  I know they don’t do anything consciously to make you uncomfortable, but can’t understand the whole context of living without a colon either.   If it makes you feel safer, always carry with you, a small meal baggy, fruits, a sandwich, apple sauce, something yummy you know you will tolerate well.  You can tell in the restaurant, you have a special condition and need to carry your own food.  Most of people will understand.  

Don’t forget you’re strong, you’re a survivor, this is not an easy road but you’re not alone.  A lot of people dealing with similar issues are here to encourage you to keep going.  Yes, you can! 😊

Hello,in my experience,  when I travel I only eat food that is cooked. No fruit, raw vegetables, and definitely not any salad.

My understanding is that each location might have its own set of local bacteria for which foreigners are not accustomed to.

Even drinking local water can pose a problem. Best to try bottled only.

I seem to have less adverse effects related to food when I follow what I have written here.hope it helps someone.

Good luck!

Solomon

Hi Valen,

Firstly, you do not have to eat whatever is on the menu...you can ask for them to make a plate for you, of things that you can eat...whether it is a huge bowl of dairy-free mashed potatoes or gluten-free whatever...ask for no dressing or more...you make sure that you get what you need to be happy and healthy...do not allow others to bully you into eating whatever everyone else is eating...you can't...that is a fact...so for now, be your own advocate, make sure that you get what you need wherever you are...if people say things like, 'oh, go on, don't be so difficult, you can eat this just once...' politely answer, 'no, I can not.'

I ask them if they would give candy to a diabetic.

That usually shuts them up.

I am not like other people, I never have been, my K pouch is 43 yrs old, I got it when I was 18, and before that my life with IBD (or IBS or Spastic colon...they never gave me a clear diagnosis) and incontinence was hell...long before the internet and social media I had to build my own defenses. I  gave in much too often and paid the price later on...suffering in ways that I cannot explain. Now? I refuse. Friends know what I can or cannot eat and new friends are told, don't worry, I just eat proteins...please do not get insulted if I refuse to eat this or that...even my step-daughter has finally figured it out (after 20yrs), she invited us for a pasta night...then called to ask if I wanted her to make me a salmon fillet...Yes, thank you, was my answer...

If you cannot enjoy the trips, what is the point...By the way, keep a squirt bottle with you in your bag or purse...a baby-sized one is enough...use it to wash with slightly soapy water down there to avoid the pain and suffering of acid burn! It helps! Keep baby wipes with you too.

People think that they are being nice or kind but they do not understand...Educating them is often useless, they do not want to learn (my biggest lesson in life learned much too late!). So, just stand strong and make sure that you have fun too!

Sharon