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Comments: 1258 • Responses: 79  • Date: 

noshore4me944 karma

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

thanksmem946 karma

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".

MadeUpInOhio448 karma

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.

thanksmem182 karma

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

SkaffaNL234 karma

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?

thanksmem200 karma

All the time!

elitesense621 karma

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.

thanksmem570 karma

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!

MagicDragonRider303 karma

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?

thanksmem586 karma

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.

timothycavinaw173 karma

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?

thanksmem217 karma

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.

eurhah60 karma

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!"

thanksmem55 karma

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

undergroundmike52 karma

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!

thanksmem26 karma

That is what I am hoping for!

Wellhowboutdat19 karma

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

thanksmem59 karma

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.

kiwiswat19 karma

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 ;)

thanksmem26 karma

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

YoureABitchTom7 karma

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

Good outlook on life. Girls aren't everything.

thanksmem7 karma

Definitely.

catallus2144 karma

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

thanksmem373 karma

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!

PM_ME_YOUR_BEST_GIF276 karma

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!

thanksmem144 karma

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

Mr-Blah45 karma

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?

thanksmem118 karma

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!

ProjectSnowman108 karma

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.

thanksmem34 karma

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

123super12325 karma

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

thanksmem25 karma

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!

Lilloller89 karma

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?

thanksmem227 karma

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!

Lilloller55 karma

Good luck, Hope you have a speedy recovery!

thanksmem53 karma

Much appreciated!

ToastFlavoredToast36 karma

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!

thanksmem18 karma

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

derp666778 karma

Are you scared your farts will blow the bag off?

thanksmem124 karma

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

Accalio56 karma

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.

thanksmem57 karma

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

Kreos64249 karma

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.

thanksmem31 karma

Thank you for the tip!

Fuck-You-Dave60 karma

What is your favourite type of cheese?

thanksmem100 karma

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

Fuck-You-Dave59 karma

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

thanksmem40 karma

God, it tastes so good!

xByteZz36 karma

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?

thanksmem65 karma

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

dontthink1927 karma

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!

thanksmem98 karma

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

SirHumid29 karma

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

thanksmem67 karma

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!

TuckerMcG33 karma

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!

thanksmem12 karma

Haha, thank you man!

DogOnABike23 karma

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.

thanksmem10 karma

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

VladmirShootin8 karma

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

thanksmem8 karma

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

WormsOnFire25 karma

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?

thanksmem28 karma

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.

zapper_the_man21 karma

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?

thanksmem27 karma

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

WakeVajZet17 karma

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?

thanksmem30 karma

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.

GimmeCat7 karma

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

Good luck with everything!

thanksmem36 karma

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

mythem14 karma

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 :/

thanksmem21 karma

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

pronouncedayayron13 karma

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

thanksmem16 karma

"You really called him that?!"

megs231211 karma

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?

thanksmem9 karma

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

CannabisandCandy11 karma

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

thanksmem24 karma

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

CannabisandCandy15 karma

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

thanksmem19 karma

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

charlie_do_56210 karma

How much do you weigh?

thanksmem11 karma

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

stonyStar9 karma

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.

thanksmem10 karma

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.

glimmeringgirl9 karma

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

thanksmem8 karma

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

goastnoats8 karma

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!

thanksmem8 karma

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

frehsprints8 karma

What happens to a butthole when it stops being used?

thanksmem16 karma

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.

datcoin14 karma

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

thanksmem29 karma

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

thenewyorkgod5 karma

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

thanksmem8 karma

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

hisnightmare875 karma

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

thanksmem6 karma

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.

Mphindi3 karma

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?

thanksmem6 karma

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

Trillination2 karma

what are you going to miss most about your stomach?

thanksmem15 karma

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.

podboi18 karma

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.

thanksmem34 karma

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

Gupperz2 karma

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

thanksmem4 karma

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.

killacam9252 karma

Have you tried Marijuana and did it help you?

thanksmem1 karma

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

iSo_Cold1 karma

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?

thanksmem3 karma

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

CesarTHEgr81 karma

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?

thanksmem3 karma

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?

WolfofAnarchy2 karma

Wait so you can poop everywhere at all times?

Damn.

thanksmem2 karma

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

darkmattergods1 karma

What if your bag breaks?

thanksmem5 karma

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.

shingtaklam13241 karma

Colon only or L. Intestines as well?

Good luck anyways.

thanksmem3 karma

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

Leafstride1 karma

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?

thanksmem3 karma

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.

mentat701 karma

Do you have ulcerative colitis?

thanksmem1 karma

Yup!

chikenwingking1 karma

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

thanksmem2 karma

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

yabeking1 karma

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

thanksmem3 karma

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.

Hijacker501 karma

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

thanksmem2 karma

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.

MorphineBear1 karma

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?

thanksmem2 karma

Getting the bag on saturday!

robbo_61 karma

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?

thanksmem3 karma

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.

Oreo_Scoreo1 karma

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

thanksmem2 karma

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

SneakyArab1 karma

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?

thanksmem2 karma

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

neinhacker1 karma

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?

thanksmem3 karma

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

ILoveToEatLobster0 karma

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

thanksmem1 karma

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

ILoveToEatLobster0 karma

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!

thanksmem1 karma

Hey I guess some are into that ;)

Mantisbog-25 karma

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?

thanksmem10 karma

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