IamA 16 year old going for a full colectomy and will poop out my stomach into a bag AMA!

How excited are you to tell people"I honestly don't give a shit"?

I'm more excited to see their morbid reactions when i show them my bag and say "This is where all my shits go, into a bag, into oblivion".

My best friend had an illeostomy and has no anus now. She dated a guy after and when she told him, he left her. I told her she didn't have an asshole and was fine so why would she be upset about losing another one?

Edit. She may have been the one to make the joke herself and if she sees this, I'm sure she'll let us know if so. We have very similar humor.

I hate people who don't understand our disease. Really sucks.

I have a co-worker who sometimes will stand next to you and say, "It stinks here" and then release some of the gas that builds up in the bag. Will you do that to people too?

All the time!

I have a ton of ileostomy supplies (stoma paste, coloplast seals/etc). My sister had to have one for about a year before she passed away and my family tried literally dozens of brands and types that wouldn't leak/etc (never found anything perfect) so now there is a box of ileostomy medical supplies I need to donate.

My question is this -- would you like these medical supplies for free? Would just need shipping covered.

EDIT: Wow I'm definitely feeling the love. Thanks everyone. I got off of work today and saw all the nice comments and gold. I just want to make sure that this stuff doesn't go to waste if it can be useful for anyone else. I am in contact with a reddit user now that might have use of the supplies. I know nothing about the stuff, so hopefully it does get put to good use.

Thank you ever so much! However, I'm in the UK. So not only would shipping be a lot (I assume you're out) but I can get free supplies from the NHS :) I really appreciate the offer though!

Im sorry if this offends you, but im wondering if you are concerned about how girls will react to this. Will it hurt your confidence?

Not in the slightest, I honestly really don't care. Because this bag isn't permanent, so within 6th months ill just have a few scars on my stomach of where the incisions were and where the opening was - they will redirect it (my poop) to my anus again.

Sorry if a stupid question, but how does that work exactly? What's the "point" of the surgery and how will they be able to redirect your digestive tract again while still achieving what they need to cure you?

I will be getting something called a J-Pouch, which takes the small intestine (which will be connected to my stomach to my back) and they will connect it to the pouch, and the pouch will be connected to my anus.

In the short term people will care (boys/girls, whatever you're into). Long term, you'll be fine.

Might not be something you want to lead with.

"Hi, I shit into a bag!"

Definitely won't! But it'll be fun to gross my friends out in the beginning.

My girlfriend had/still has UC. She had her colon removed 3 years ago and then had the j-pouch procedure done. She lives a fairly normal life now. Has to avoid certain foods and fiber but is better than the alternative, which was death. Best of luck to you, get healthy, and j-pouch will eventually normalize your life again!

That is what I am hoping for!

Sorry but in a comment above you said the surgery is completely irreversible but here you're saying it is. Can you clarify?

Apologies, I meant I can't go back to having a colon, like I can't have another one put into me. What I meant above was that, I will be getting something called a J-Pouch, which takes the small intestine (which will be connected to my stomach to my back) and they will connect it to the pouch, and the pouch will be connected to my anus.

Don't want to be a dick by telling my story and give you bad vibes. I had Hirschsprung disease when I was 1.5 and it resulted in partial removal of my colon (about 12 inches). The recovery was lengthy. It pretty much took me 15 years to control my bowel movements (27 now). Now I have all sort of IBS related symptoms. Initially it was sever IBS-D. Overtime it got normal and it has transitioned to IBS-C...Which results in bloating, pain, acid reflux. I hope all goes well with your surgery and you run into minimal issues. Just keep these in mind and try to relax. I am sure what you are going through sucks 10 times more. Digestive system diseases suck. Good luck and take care ;)

Thank you, I know there is always a chance of complications, but if i don't do this, I'm going to get cancer in the near future

Not in the slightest, I honestly really don't care.

Good outlook on life. Girls aren't everything.

Definitely.

Hi, What are your symptoms? Will you eventually be able to poop normal again or what?

My symptoms when it first started where waking up one day at the age of 8, running to the bathroom and literally pooping out blood everywhere. My mothers a doctor so she immediately rushed me to the hospital, where I continued to go around 50 times that day, straight blood, had to get transfusions. After i think a month i calmed down, they gave me high doses of steroids and others drugs to calm my colon. I was still going 5 times a day but luckily no blood. And ever since then my condition gets worse once a year where i get blood again and go around 15 times a day, but it normally calms down again within a few days - this is called a flare. And other symptoms are severe stomach cramps, I'm talking it makes you cry, exhaustion doing the most mundane tasks, nausea, dehydration. However for the last 9 months I've been in a constant flare with all symptoms hitting me and no medicines will stop. And regarding the second question, no never. This bag will be temporary, after two more surgeries they put a pouch in me, which acts as a fake anus - so I will pass my poop though there - this is like 6 months down the line though. Even then, my poop will never be hard, ill be going 4 times a day or more. But I'll be able to hold them in, and no more tablets! I'm currently on 10 tablets a day!

A fake anus? What a time to be alive!

All joking aside, I hope that your surgeries go well and that your quality of life improves and you are able to poop like everyone else eventually!

Haha, it's even weirder than it sounds, trust me! Thank you! :)

Logistical question.

Without an anus, doesn't "shart" incidents become more than likely?

Will you have to time ypurself to be on the bowl or will you retain your "retaining" capabilities?

Yes, they will. Even when I get a "fake" anus, if you will, I will need to stay at the hospital for a week or more to learn how to regain power of my muscles in my butt so I can sense and feel when I need to go, or if it feels like a fart, shart or poop!

My little trick is if it feels hot on my butthole. Hot butthole = poop. Not hot = fart. It helps me, maybe it will help you.

Haha, i can normally work out which one it is, but post-op ill try this!

That is pretty hardcore. I have been having digestive problems. I didn't know that having the colon taken out had such bad symptoms before hand.

I have thought sometimes it would be nice if I could just have part of my intestines removed that seem to be problem areas when I eat food. It is like they just get all gassy and bubbly and then I get kind of anxious and antsy and it isn't a good time.

Best of luck

Thank you man. This surgery is really last case scenario - it's when all meds start failing. If you feel it's a problem, have it checked out, there will be loads of medications to help!

Are you happy to be having this surgery? Do you feel it will be a better trade off / quality of life then having to deal with your symptoms?

Definitely! Imagine having to take an average of 10 tablets or more a day for the past 8 years of your life. And every once a year, your face puffs up because of the medications (It's called a moon face) all while you feel like complete and utter crap all the time, depressed, exhausted and everything you could imagine. I will no longer have to scavenge for a toilet wherever we go, I barely go out any more because I'm afraid their won't be a toilet or i won't make it in time. I'll never be normal, but I'll feel so much better! No more putting up with the above!

Good luck, Hope you have a speedy recovery!

Much appreciated!

My mother had a total colostomy last year (rectal cancer), and she's doing great these days! The transition was a little weird for her for a couple of weeks, but nowadays she goes on and on about how thankful she is for the procedure; the bag is nothing compared to the discomfort she was living with for years. She goes swimming, walking, everything now. She's turning 81 this month.

You really will feel better dude, the bag's no big deal. Enjoy the new quality of life!

Much appreciated man :) Thanks for the vote of confidence.

Are you scared your farts will blow the bag off?

Nope there is a small hole in the bag which can let them out, the hole also includes charcoal to dull the smell down.

This is the questions I wanted to ask for years, but always forgot. I have seen a lot of stomy bags in my life, but not a single one of them had a gas in it.

There is a small hole at the top of them, which gas escapes out of. The hole also includes charcoal to mask the smell.

Hey, if the charcoal isn't enough I read in my textbooks that you can put peppermint extract in the bag to help kill the smell.

Thank you for the tip!

What is your favourite type of cheese?

I've never been allowed to try many cheeses, but if I'd have to pick... mature cheddar. Not fancy, but I enjoy it.

My man! Mature cheddar is where it's at!

God, it tastes so good!

Is this surgery being provided to you for free courtesy of the NHS?

If not, how are bills being paid if you do not mind me asking?

NHS :) Everything is paid by the government. Including any future commodities relating to this surgery.

Whoa! That really takes the stress out of having medical concerns! I wish healthcare was paid for by the government... right now our government gives you subsidies to lower the cost of health insurance based on income. If you make too much, they won't aid you at all. Luckily I have insurance through work that I don't pay for, I just pay the co-pays and deductibles (which totals around $5k USD a year.). I still owe over $2500 for my appendectomy from the end of last year!

That sucks, healthcare shouldn't have a price. Everyone deserves a chance at living.

What are the foods you're absolutely Not supposed to eat or even think about?

As of right now, anything spicy, dairy (although melted cheese, i can tolerate), foods with too much fibre, foods with too much sugar, foods with too much salt and just generally a lot of junk food, such as more than 2 bags of crisps a day. After surgery, anything!

Damn. When I read the title I wondered what it would take to be worth shitting out half of my digestive system, but no In-N-Out or pizza or dessert for the rest of my life would have me poopin out my pooper faster than you can say "poopin out my pooper".

Best of luck with the surgery!

Haha, thank you man!

I'm not a nutritionist or anything like that, but I kinda feel like no one should be eating more than 2 bags of crisps a day.

Oh I don't haha, I'm just saying :)

Bruh, I saw you liked cheddar, but when you can eat any type of cheese, try out pepper jack. It's the bomb dude.

If it can be melted on something then I'm down! I can't eat non melted.

So it sounds like eventually you'll have the bag removed and poop normally again, right?

Also, how fast does the bag fill up and how often does it need to be changed?

That's the plan. For the first week, the nurses say I need to empty it once every 3 hours or so. Then after the first week, maybe once or twice a day.

I knew a guy who had a poop bag as well. He used to throw it on people when he was drunk. Are you planning on doing the same?

Hahaha, I'll be sure to threaten my friends, maybe a leak prank on my friends or something! Would be hilarious!

So,digested food from your ileum would just go straight through your abdominal wall into a bag?How would you empty it?Can you do normal things while like that?

Yes that is the idea. For the first week I'd have to empty it once every 3 hours, after a week, once a day or maybe twice a day. Its basically a carrier bag with a hole with attaches to your stomach, with an opening in the end of it which is vacuum sealed, you unzip it and empty the fluids inside of it into a toilet. The bags usually last 1 week before they need replacing, some last less, some longer. And yes, I will be able to do everything, even go swimming, and other strenuous tasks.

That's fantastic that you'll still be able to do all those things after. Isn't modern medicine wonderful? :)

Good luck with everything!

That's why I want to be a doctor when I grow up. It's truly fascinating.

Have you considered getting a J-pouch (internal pouch made of small intestine connected to your anus) instead of getting the bag? If so, what made you choose the bag over the J-pouch? I got a J pouch when I was 18 for UC and for the few months I had a bag while it was healing, my skin broke out in terrible rashes all the time :/

Yes I'm getting the J pouch! It is going to be a 3 step surgery! :)

Are you going to start an energy drink called Homicide? Double asshole.

"You really called him that?!"

What's the very first thing you think you'll want to try after surgery that you have never eaten before?

A Big Mac! I'm not allowed red meat either, so I've always wanted to try one.

Oh man. Great choice. Just wait until you try a great grilled steak if you've never had red meat before.

Always wanted one, it sucks seeing your friends tell you how good something tastes but you aren't allowed it. Takes loads of willpower.

I am 22 year old girl and I was diagnosed last year, it's taken over a year calm my symptoms. I was wondering what age you were diagnosed and have you every been in remission or has it just been on off between not great and bad flares?

since i was 8, I've never ever been "well".

How much do you weigh?

about 45kg. Im not tall or chubby. Im short and skinny.

Am guessing this is all being done by the NHS? In my experience (nothing like yours!) they provide really good service once you've got to the front of the queue.

Thanks for doing the AMA and being so open about something many people would be shy to talk about.

Yes I am, especially the children wards, they take really good care. It's alright man, It's something many people have to live with :) Other people have it much worse than I do.

Have you tried the poop transplant? I have heard there has been some sucess with this. https://en.wikipedia.org/wiki/Fecal_microbiota_transplant

I've heard of it, but currently the NHS don't offer it.

What happens to a butthole when it stops being used?

Stays open. My bag will be temporary, after two more surgeries they will redirect my small intestine (from which i was pooping into my bag from) to a pouch which is constructed just above my anus, this pouch is basically my colon now (except it doesn't function as a colon) just as a passage for the poop to exit from.

Continues to produce small amounts of mucous which we normally produce to help in the passing of stool.

Not for me man, I'm going for a full Colectomy, even my rectum will be removed.

Have your doctors ever talked to you about biologic treatments? My understanding is that steroids are no good long term and I've heard that there are some treatments out there that are created from human antibodies that are supposed to be safer and very effective? Thanks for sharing your story!

Biological treatments don't work so well on Ulcerative colitis patients, they are more geared for Chron's disease sufferers. No problem!

Can they do a fecal transplant to see if that helps or have you tried that?

Unfortunately not. 2 reasons, first the NHS don't provide it yet. And second, my colon is too damaged and needs to be taken out.

Is a colon transplant ever possible to allow you to poop normally?

Nope, this surgery is completely irreversible, and so far there isn't a way to have a transplant in modern medicine.

So sorry you've had to go through this, but hopefully, you'll feel loads better after your surgeries!

Since one of the main functions of the lower intestine is reabsorbing fluid, are you going to have to do anything extra to keep properly hydrated after your procedure?

Honestly I was never told about the reabsorption bit, I assume they are just going to tell me to keep extra hydrated.

what are you going to miss most about your stomach?

By that I believe you mean my colon, uhh... I'd say being able to only go to the toilet for a poop once a day, or the poop being hard - neither of which I have experienced since I was eight. So it won't even matter that much.

I will never take being able to poop a solid poop for granted ever again. I kinda like the feeling of pooping a good amount, its so satisfying after.

There is a saying with our disease, when you go to the toilet and see a massive floater someone took for granted and didn't even flush, you feel jealous, not disgusted. I'd do anything to feel normal again :p

are you going to poop out your stomach? or the contents of your stomach?

Out of my small intestine which will be connected to my outside abdomen area through a hole in my skin. The stomach is just what everyone refers to it as.

Have you tried Marijuana and did it help you?

Nope, not tried it. We don't get that offered here in the UK.

Could you go a bit more in depth about your condition, and why this is an emergency surgery?

The colon is too damaged, and it is not responding to anything. This is extremely dangerous as it could rupture my colon and cause huge internal bleeding, it would be life threatening. Also there is a cancer risk now that it is so inflamed in the next 5-10 years.

Forgive the grossness. But do you think you'll squeeze the new bag after you've made a fresh deposit?

Also after you get your J pouch, will it affect your metabolism?

Going to have to, but it will be okay! and I'm not too sure.

Colon only or L. Intestines as well?

Good luck anyways.

Entire Colon, I believe that means the L. Intestines, no?

What if your bag breaks?

It's pretty common. It won't burst or anything, but it is stuck to your skin with an adhesive, so it may peel off, in that scenario, you'd clean around the hole (if there was any poop leakage) and attach a new bag. The hospital provides loads of these bags.

How will you know the bag is full. Does it have a sensor?

Haha, that would be so cool! No, you'll feel it getting heavier, or you'll just want to empty it because you want to do something.

When you poop at a public place do you have to leave immediately to clean up? Or do you chill in a corner till youre done and continue on day?

If you mean in my bag, I currently don't have it. I'm getting it on saturday. But the bag is designed so you poop whenever. Because you will not get a sensation that you need to go anymore. Instead you'll just do it and when you reckon it is time to empty your bag, you go and empty it. Or do you mean how i am right now?

Wait so you can poop everywhere at all times?

Damn.

I can't choose when to haha. It'll just come out.

Goodluck on the surgery! Now my question is whats your favourite food?

Ooooohhhh... That is a tough question. I think it would have to be Nandos!

My uncle's mom had to live with the bag for years until she died. How does this affect your life at school, assuming you still go to one?

Getting the bag on saturday!

When you poop out of your stomach do you force it out like when it comes out of your butt or does it just happen? If you make it come out, how do you do it?

I'm getting it on saturday. But to answer your question, it just comes out whenever it pleases, the poop is watery too. and you don't feel a thing.

Do you have ulcerative colitis?

Yup!

Something I've always wondered, not sure if you know yet but does anything still come out of the butt when you have a bag?

Some people do yes, they have some mucous come out of their butts. But they usually have a little colon left at their anus. Which I won't have, so I won't be excreting anything else.

Hi!

I had a restorative proctocolectomy a few years ago, pretty much the same deal as you. I had uncontrollable UC for several years, and the only thing that ever helped was Prenisone tapers, which sucked. Just wanted to say good luck! You're gonna be super happy with it, I know you will!

What are you most looking forward to after the surgery? Have you tried ALL THE MEDICINES at this point? They tried me on everything from the standard Asacol to clinical trial drugs. Also, are you SUPER PUMPED to not have to take a dozen pills a day?

Everything, pred has stopped working. last to courses didn't do anything except give me the moon face (so bad).

Hey! My little sister (17) was diagnosed with UC two months ago. While not as severe as yours, do you have any recommendations on food recipes, restaurants, or any other general tips?

avoid spices like the plague. and try to stay away from dairy, i'm not lactose intolerant, but i noticed milk effected me a lot. also eat foods with little to no salt and sugar (even soft drinks). And no alcohol

Will you use the last bag of shit for a prank?

Nah, it'll be as soon as I go to school! I should record it, I'll pretend it leaked on my friends xD

Are you gay or straight? Because if you're gay, I've got some real bad news about your future sex life bro....

Straight man, straight. It's all good :)

Good, at least it's an option then. Not sure how you go about letting a chick know about your shit-bag though LOL. Goodluck!

Hey I guess some are into that ;)

Hi. There's a project in NYC called East Side Access for getting the LIRR into GCT.

Anyway, my friend said it sounds like a dirty sex act, and I figured out that if it were a sex act, it would be having sex with a colectomy hole. Would you ever consider having East Side Access?

Uhm, I'm not too sure what this is. Sorry!