I'm a 36yo who has had bowel cancer and had 2 colonoscopies without any sedation then 2 surgeries to completely remove my bowel and sew my butt shut. AMA

How are you holding up?

Honestly? Not great. A few weeks ago I developed a hernia next to the stoma which adds to the pain (the stoma always kinda 'throbs') and if it gets worse and causes a blockage will require more surgery.

Everywhere I go I hear stories of "The cancer came back and took their life", TV, Movies, general chatter, even one of my friends lost their mother last month to cancer but he said how he was happy the surgery she had gave them another 3 years together, so I'm constantly thinking now 'When will it be back' and there is no way to stop worrying about it as I have this thing attached to my stomach which is impossible to not be a reminder.

Life is a constant struggle. Just remember that you're stronger than most of us

Thanks mate, it's difficult but I'm trying.

Listen, I have some advice, and it works because it is actually the truth, but it requires you to be accepting of a way of seeing your life as it is, and not how you have been seeing it all of your life up to now. It's a process, but if you dedicate yourself to this paradigm, it will free you.

Every time you despair about your situation, remember you are here now. You are alive now. You are not in surgery. You are not receiving the bad news you fear. You are living a life with great challenges, but you are as comfortable as you can be and not in critical danger.

You see, most fear and anxiety is about the future. What might happen, what will happen, what I think may happen. You have to let that go and realize that you don't live in the future. You're not there right now. Right now you can only deal with what is in front of you. Right now you have the problems of right now to face. If other problems come, you can face them then. Right now you have other problems to worry about, the ones right here, where you are, whatever you are doing, right now.

Be in the present. Be here now.

Thanks mate, actually sounds a lot like what my shrink says too me. I'm trying to change my mindset, hopefully one day I'll get it right.

Just as a little tip: if you want to learn more about what the previous user was talking about then the term you want to search for is mindfulness. There are a lot of helpful resources available in the psychiatric community on the topic and I've found a lot of help in different DBT (Dialectical Behavioral Therapy) exercises that focus on it. I really wish you the best and am open for any questions if I can direct you to some good answers.

Amusing as my doc had me download a mindfulness app recently, shall continue looking into it, thanks mate.

What helped my fear of Death was accepting death. I know that sounds kind of silly, but it has finally allowed me to relax. I had been having a lot of health problems and my anxiety was through the roof. It felt like my brain was on a loop. Always worried about every little anomaly in my body.

Like previous users had talked about I started with mindfulness, but that led to some other soul searching. I tried to get to the root of the problem. Why was I so scared of death besides the obvious. I realized I had started acting entitled. Like I'm scared to die and I shouldn't have to. This is my life I thought, why should it have to end.

I saw a show about accepting death. It's coming for us all and we can't stop it. By accepting i will die one day a weight was lifted from my shoulders. Whenever I started getting in my head I would just repeat to myself. Today I'm alive. I will do whatever I can to stay alive, but I accept my death. Just being present, and enjoying this terrible, beautiful and temporary life. Slowly but surely I came out of the depression and now I have started to change my attitude.

I can only imagine what you're going through, but hopefully you find peace in this life. I hope any part of my rambling response helped you at least a little. Good luck.

I'm trying to work on the whole 'accepting death' thing, I know it's the end goal to peace really, but am far away from it for now, I'm scared and feel that constantly but I do have enough mindfulness to also know "I should work on x", so maybe one day, one day...

I had a ruptured perforated diverticulitulum. 21 days in the ICU. Had to have a bag until reattachment surgery. After the reattachment surgery I triedA to get back to normal too soon and ended up with a triple hernia at the stoma. It took another 10 months to recover.

My hernia only happened last week so still hoping it won't get too bad as I acted quick, but damn it hurts and the Stoma team are worried about blockages so I'm trying to play it safe atm.

Glad yours worked out mate, I gotta admit I was a little jealous while in hospital there was 3 elderly gentlemen in my room who had all had their reattachment surgery and were trying to get back to normal and I was laying there thinking 'great, I never get that option'.

But no ill will, I'm glad they and you were able too eventually mate.

As someone who has had reattachment surgery I can tell you that it's no fun! It took me a long long time to get out of the 3 second warning stage, and even now I have to be really careful about locating toilet facilities ahead of time whenever I go anywhere new. I often longed for my stoma back, things were more..... predictable 😬

I'd actually wondered about that, when they spoke to me about the reattachment stuff (before they knew the extent of the cancer) I thought with a smaller bowel that could be really annoying at times.

Sorry to hear mate, but hope apart from the annoyance you're doing better health wise!

Sir I’m a 68 year old combat vet and I could never endure half of what you have already done!!!

You should be here! You just helped me snap out if it about my terrible chronic pain. I hope you have someone you look forward to seeing each week!

Christians, Muslims, Jews, Buddhists, even Scientology; pray fir this soul! Ra just doesn’t listen to me?

You're a legend mate and thank you for your service, I hope to make it to your age and have this story to tell.

and hey, maybe I should try getting Ra on my side if he isn't listening to you ;)

Go smoke a joint my friend. Sometimes the only therapy is just separating yourself from reality for a little while. Take care, you now have a bunch of internet people who want you to do well. Just know that it might seem hopeless but well, that's just life I guess.

My aunt has had a hysterectomy and had to do chemo several times because her cancer kept coming back. She was diagnosed in her 40s, she's been in remission now for a few years but it recently came back. Just figure that, if it does come back, this time you will be prepared for the experience and it will be easier by default than the previous time.

Good luck man.

Thanks mate, distractions are kinda all I got, I won't lie and say I'm not scared, every damn day I'm scared of when it will be back but I also know there is nothing I can do about it so my mind fights with itself, but as you said separating from reality is the only escape sometimes (though I personally don't smoke anymore, but still thanks!).

Can we see a picture of the hernia?

The hernia is hard to see atm as it hasn't breeched the skin (and hopefully won't) but this pic you can see to the right of the Stoma is bulging more then the left, that's it. https://imgur.com/9EwwKGF

Basically it's breeched the muscle/fat layers and is sitting against the skin so I have to be super careful, it's painful when I wash because I can actually push it in and then feel it come back out (and man feeling your intestines move inside you is damn weird) if it gets worse, breeches the skin or causes a blockage I'll have to have more surgery they have said.

Edit, fixed pic link

They are gutted.

haha, I gotta use this one. I already like to say people can't call me an asshole anymore because I don't have one.

Did you also lose your opinions when you lost your asshole?

Great AMA dude! I’m sure someone will be inspired to visit a doctor after reading your story and it may save a life. Best of luck to you!

I love the new jokes I can use coming out of this, thanks mate!

That's great! Haha it's great that they didn't cut out your sense of humour :)

Ya gotta run with it, a couple of my friends kinda tippy toed around it at first and so did I but I decided even if it's stressing me I gotta own it and joke about it the little moments of happiness help.

On the bright side you can go gambling, since its no longer possible to lose your ass to the house

Also gives a whole new meaning you "rip you a new asshole"

Oh! And the phrase "I got some shit on my shirt"

Fellow cancer survivor with a fucked sense of gallows humor. Dont look for the bad times, focus on the good ones. If you go looking for problems then life will truly suck. Lifes a lot more enjoyable when you try and enjoy it. Sounds dumb but it works.

But if life keeps sucking then know that there's people out there who went through it just like you and want to help you, even if its just to hear how shitty your day went.

Fuck cancer, and good luck, OP

Thanks for the new phrases to use mate, I love coming up with them with friends.

I'm trying to focus on the whole 'I'm alive, it's better than cancer' thing, but as I'm sure you know it takes it's toll sometimes.

I hope I can get out of my bad mindset one day.

Truth be told I impressed my doctors with how fast I came to terms. I basically read all the symptoms and risks involving chemo and said "well fuck me, it sure as shit beats dying" pretty much 3 days into treatment

I'm one year past remission this April, and I was diagnosed with stage 4 cancer, given "3 days from death" if I didn't get treatment. But so far a year out I have no major complications besides a fucked up liver and numb feet (like to joke I kicked cancers ass so hard it killed my feets nerve endings, but no, just neuropathy) so I can't speak to having such a drastic and lasting effect such as no more games of hide the cucumber and having a second, much more pissed off belly button that spits shit and acid on things.

Good to hear you dealt with it and kicked ass mate, keep it up is all I can say.

I'm a bit slower when it comes to accepting things I guess but one day I hope too, it's not easy for anyone but maybe one day.

How do you shit ?

I get no choice in when it comes out, it goes straight into the bag, the only way I know if by the weight of the bag.

Look, don't be too grossed out. Shit comes outta the ass. You've got that wrapped (sewn) up so to speak. It's just extremely processed food being ejected by the digestive system. Probably could sell the bags of preprocessed organic nutrients to the folks out here in LA.

Oh man that cracked me up, thanks for that mate. Wonder if I could get on Shark Tank /s

Do you ever miss pooping?

Weirdly I get 'phantom poop' urges, the surgeons said to expect it but to be sure never to 'push' cause yeah anything coming out of there would be super bad.

But I don't miss popping no haha

Yeah but where are you doing this ama from then???

lol, prob one of the new people that has never used my phone while on the toilet.

You bathroom can be a new closet!!... sorry for the bad joke but, you know, more stuff to get. A big hug and my best wishes.

Edit. A big hug not an bug hug. Human size bugs could probably give bug hugs!

My bathroom has actually become my Stoma room, there is a lot of products I have to use daily to keep it clean and healthy and the bag is changed daily so I bought shelves put them in the bathroom and made it into my Stoma room with all the stuff I have to use.

Are you changing the whole thing every day or just the attachable bag? I had a bag for 8 months and changed it every 3 days at first then every 4-5 days. Changing it every day sounds exhausting.

I have to change it daily, because of how the spout is if I leave it for more then a day it tends to burst.

My morning routine is get up, get new one ready, take it off, shower, dry just that area and put new one on.

They were considering doing corrective surgery because of how my spout points down, but they want to avoid that at all costs so daily it is.

The site looks really healthy, you're taking good care of the skin!

Now it is yeah, if you compare it to the last pic at the end of my post it's amazing how much better it's gotten, the hospital actually asked if they can use my pictures for a case study of how much things can improve which in a weird way is kinda an honour, if what I went through can help anyone in anyway I'm all for it.

So if it wouldn't point down, you could have had it for more days?

I wouldn't have to change it as often, basically because it's pointing down directly at the seal it eventually pushes against the seal and breaks it.

If it was straight it would just fall into the bag so much easier.

They were considering doing corrective surgery on it at one stage but the stoma team worked with me on a bunch of different bags and accessories and got it too were it is now and well hell even I agree changing it daily is better than risking more surgery.

Aside from the excess blood in your stools, what kind of sensations or pains did you feel in your abdomen that might’ve been symptoms of the cancer?

When I say blood I mean a LOT of blood, like I was peeing bloody from my arse if I'm honest.

At first my doctor said it's normal for people to have a little bloody sometimes but this was a LOT.

Otherwise though, it wasn't too bad, it felt like random cramps or just feeling a little sick (like when you've eaten something bad) but it felt lower than my stomach.

That's probably one of the scary bits, it wasn't an extreme pain just a 'sick' feeling, but the amount of blood was the giveaway

What kind of Dr. tells you that a little blood in your stool is normal? A small amount of fresh blood from a hemorrhoid is “normal,” as in not too concerning, but consistent bloody poop should trigger all kinds of testing including metabolic panel, abdominal scans, endoscopy, and colonoscopy. As someone that has experienced years of GI issues, I couldn’t imagine my Dr waiving off something as serious as bloody stool as being normal - it’s not.

I’m sorry that you’ve had to go through this.

EDIT: Maybe an actual doctor can chime in to say otherwise, but your “amazing” GP was anything but if she had the full story of your symptoms and let that go for two years. Lord knows that I’d be calling my doctor and probably going to the ER at the first sign of obviously bloody stools. That’s like a major red flag (no pun intended) for bleeding ulcers, colitis, and serious colon cancers.

I should differentiate here, IN your stool is something she asked constantly as in it was mixed in with the stool, I always said no as I assumed it wasn't as I mainly saw it when wiping.

So she assumed it was just blood when going to the toilet, ie not IN the stool and that's what she said can be normal because of cuts/haemorrhoids etc

It's he IN the stool ie mixed in with bit that is the difference. and the second I said it is and was a lot she acted, I don't blame her at all because I was the one saying it wasn't IN the stool.

Sorry for explaining it badly.

How can one tell if blood is IN the stool without a poop knife?

Put toilet paper in the toilet first and try and poop on it instead of into the water and as gross as it seems inspect it, see if there is blood seeping from it of just 'on top'.

Still not good. A little amount of fresh red, not dark,blood is kind of normal for hemorrhoids. But dark blood, which is a sign of internal bleeding, or even consistent fresh blood should be enough to give a doctor pause. A look at those suspected hemorrhoids should have been the minimum.

EDIT: I’m not trying to dog you, but either you didn’t properly communicate your symptoms or your doctor was not giving you the proper attention and care. It’s so important that people are honest and open to their GP’s and that they contact them or even go to the ER when things are obviously not right.

It's all good mate I know whatcha mean but it was 100% me, I look back at it and I always told her it was bright red and I mainly saw it on the toilet paper, maybe it was me trying to hide it subconsciously or I was just dumb, I dunno.

To her credit after I got the results and told my GP she apologised ALOT and still continues to randomly to this day, I still think she is a great doctor and she is helping me with further complications I'm having now due to the surgery and she has fought for me several times over the 10 years.

I think it was just a mix of me explaining things wrong and maybe she shoulda pushed a little harder, but in the end there is no point in the blame game.

You are 100% right though for anyone reading this, don't be like me, don't hide it out of embarrassment or anything like that, get it checked and if the doctor doesn't act and you think something is wrong go to another doctor.

Was is bright red or dark? I’m just wondering if you would even recognize it as blood at first

At first it was darkish red, and only in small amount or you'd notice a bit when ya flush, after 2 years though I was painting the entire bowel red and it was very clear something was up.

You went 2 years without getting it checked ? I’m not trying to make you feel bad but other people need to realize that’s too long

I did tell my doctor about it, but she assumed when I said I noticed blood I was just having a little bit every now and again, I'd had hemimerids before so I knocked it up to that.

It was stupid of me to wait that long I agree, but I thought I was over reacting, the point of this AMA was hopefully someone may read it an not wait that long or if a doctor says a little every now and again is fine and you know it's a lot then push for it to be checked.

End result, yep I was dumb to wait 2 years, I agree fully mate, but it was a mix of me thinking it was something else and part fear I guess.

So I’ve been having bright red blood in my stools lately... like once every 2-3 months out of no where and it lasts for 1-2 days and then seems to magically go away. I have been assuming it’s hemorrhoids since my diet is pretty shitty. But I’m also 36 and your post has inspired me to go get it check out.

Better to be safe then sorry mate! Hopefully it is just something simple, but hey better to know for sure.

I've wondered about this. On one hand, get checked out and potentially live longer. On the other hand, the remainder of said life if something was up, would be buried under a mountain of inescapable debt and financial bankruptcy for my family.

I hate that people have to make this thought, and I'm truly sorry that your country is so backwards that it forces you too mate.

I'm not even American and it makes me angry, I can't imagine how you feel.

It wasn’t “stupid” of you. Stop beating yourself up. It was fear and hopefulness — your doc told you it was fine and you WANTED it to be fine. That’s an almost impossible combination to overcome. Nobody WANTS to have cancer and if a doc says “nah don’t worry” it’s really a lot easier to continue telling yourself “it’s ok—a doctor told me so.”

Be kind to yourself. This is NOT your fault. You are NOT stupid for having waited. You are human. Best wishes. Make your doctor give you a prescription to stop worrying and work on life as it is now. This is life and you’re alive. Without that bag you’d be dead now or soon. The bag is your lifeline and you were SMART to do the hard thing and get it done. Be well. Be kind to yourself.

-a fellow cancer survivor constantly living in small amounts of fear.

Thank you, you are right it's just hard to accept which I'm sure you can understand.

I'll continue working on a better mindset, hopefully one day we can both live without the fear.

How often did you have that excess of blood?

I've had the same issues - so much blood the water would be dark red. Saw a doctor and they seem to think GERD or something else. However, the mass blood was infrequent for me and has been months since it's happened last. I also have bad low stomach pains, but it seems to correlate 100% with spicy foods (which I used to never have an issue with).

Did you have any other symptoms? The doctors also don't seem concerned as I don't have any weight loss, fever, etc.

Started off just randomly a little and got to the point were after I pooped I'd then basically pee out blood for a little (this is the point I went to doc and said something is very wrong and they acted), the trick and why my doctor didn't act straight away is the difference between it being 'in' the stool or just some blood when you go or when you wipe.

Blood 'in' the stool is serious and should be looked into further but I always said it was when I was wiping or such and I'd had haemorrhoids before so I knocked it up to that or a tare from constipation, spicy food causing the discomfort etc, but if you're worried and your doc isn't don't be afraid to get a second opinion mate, better to be safe then sorry.

Piggy backing.

Black and tarry blood is a bad sign, as it means that the bowels have had time to remove water from the stool. This means that the blood likely occurred somewhere in your upper to middle GI tract. If it was from your upper GI tract, it would have to be a very large amount of flood to appear red in your stool, and you would probably have associated pain (ulcer, perforation, erosion).

If the bleeding was in the distal part of the GI tract, it would usually be bright red, and is more likely to be be a tear or hemorrhoid.

Everyone be careful out there, and don’t be embarrassed or shy about getting checked. Everybody poops (except OP now, I guess).

Best of luck OP, wishing you peace and happiness.

Edited because my English wasn’t great.

Everybody poops (except OP now, I guess).

Made me laugh, thanks mate and good advise for all.

So as it progressed, you were having the blood w/ stool every bowel movement? Or every few days? Or on occasion?

All, it would constantly be blood everytime and only increased in amount, that's what got me to say to my doctor 'something is very wrong', hell it wasn't even in person as COVID had just hit she was doing telehealth over the phone and she listened to me explain it and agreed it needed ot be checked and setup an appointment for a colonoscopy, however as I said she thought it was probably just an ulcor.

Within 15min of the colonoscopy being finished while I was laying in recovery the doctor came out and told me she thinks it's cancer, they took samples to confirm of course but she wanted me to know what to expect as she had seen it before.

Gotta admit that moment will stay with me for the rest of my life.

Scotland checking in: at age 50 got a letter and a sample kit.then a reminder after 6 weeks I’d not done it. Complied. Results back as blood in stool. I saw nothing ever, TBH. Colposcopy - polyp removed with tatoo (and no sedation just because they said I could at any stage if I wanted). Now I’m due mail-in blood in stool tests every two years. Watched it all on camera. Bowel prep was ok. Two years before I’d had a routine one in the USA that found nothing. These things can come fast :(

They send those out at 50 here too, doctors/surgeons said it was good they found mine early though due to the amount of cancer I coulda been dead by 50.

You're not the first to say the bowel prep was okay in this thread, my god you people are stronger than me, that was torture drinking that stuff and getting it out, it literally felt like it was burning. I'm glad I never have to do it again!

Was it just one-time a lot of blood, or like for a long time?

2 years worth (which yes I'm stupid).

Originally it was just a little, I told doc about it and she asked if it was 'in' the stool or just when I wipe or such, I always assumed it was the later so it was knocked up to haemorrhoids or a tare from constipation etc

However the start of last year I'd literally go to the toilet then after I'd basically pee blood from by butt after and that's when I knew something was very wrong and I told doc and she acted.

Seems the big difference is if it's actually 'in' the stool or not.

I've been bleeding regularly when pooping for the past 4 years now and i went to the doctor 3 times as was told that i just had a hemmorhoid that is bursting and that's it's completely normal and that there's nothing to do about it besides surgery. So i stopped going to the doctor for it. Seeing this post is making me wonder if it's something i should get checked more regularly? The amount of blood varies between dripping into the bowl a little to completely covering the toilet bowl in red

Honestly mate., I'd get a colonoscopy done if you can afford it (I know different countries it can be insane), it's such an easy procedure (even more so if they put you under) and it will give you peace of mind and they may even be able to fix it.

Do you use a belt for your bag? My husband had one for awhile (Crohns--he had an ostomy for about 18 months, it was reversed last January) and he had a StealthBelt, it seemed to make things a bit more comfortable. I understand yours being permanent is a different situation.

I am sorry it sounds like you are having a hard time. I was diagnosed with stage II colon cancer at age 37 (yes, our children have hit the lottery on bad family history on colons) but that was almost 6 years ago and thankfully I am fine now. I know the feeling of worry but in no way anywhere near the worry you must feel and all I can say is I hope that you are soon able to live your life with relative normalcy.

Can you describe what the colonoscopies were like without being knocked out? I have had three now (I would have one yearly if they would let me, I don't mind the prep). It seems like it would be interesting/scary/weird all at once, especially if they real-time explain what is going on in there instead of being silent or ignoring that you are awake.

I'm glad you and your partner are okay! Originally they wanted to do the same for me, basically reconstruct what they could so the stoma would only be temporary but after that first surgery to remove the tumour they said there is just too much cancer it all needs to go to be safe.

I actually just updated the OP post with one of the complications I had with bags. The solution took months of trial and error, so the end result was I have the bag, then a convix thing which sticks to the bag, then a stoma collar which goes over the stoma to make it point out more and then I also have the belt and also big elastic kinda 'garter belts' for if I go out.

The colonoscopies were indeed weird, I actually asked the doctor not to tell me things while going on so I just either stayed quiet or talked to a nurse about random things.

The insertion didn't hurt but when they inflate the bowel with CO2 it does because it's stretching it out. In a way it felt like being exploded from within, that's the painful bit, the gas injections randomly to get better vision, otherwise it was fine and of course they were super professional so that was good.

Oh man, I got a colonoscopy to check for celiac and they sedated me but it didn't work (even after giving me another dose). Unsedated colonoscopies are a NO for me. When they blew up my intestines I was screaming- no one mentioned any pain or consciousness beforehand !! Afterwards they just said, "yeah, sometimes the anesthesia doesn't work on young people." OH, COOL THANKS GUYS.

Ouch, that's my biggest fear right there (always has been), them not knowing you're awake.

It's cardinally weird though, the camera going in and such meh no biggy but when they inflate you with co2 that shit is weird and feels like you're gonna pop from the inside out.

Glad you're okay mate!

My father had the same thing, after about 10 years of ignoring blood on his stool. Did the bleeding while going to the bathroom started all of a sudden or were there any prior signs?

I ignored it for about 2 years, just thinking 'eh it's normal to have some blood', it's when the blood increases to the point I'd poop then basically pee blood out after I wanted doc to look into it further.

As I said some blood is normal but this is a LOT, otherwise the only sign was things I'd felt before like when you eat something bad and you feel diarrhea coming, no major giveaways.

Do you ever poke the part that’s stitched up just to feel it? Sorry weird question I know.

Not weird at all, almost every time I have a shower, I wash my behind and run my finger along it and think 'this is weird' it's just smooth, hell to get real weird I kinda wanna take a picture just to see wtf it looks like back there now but I can't justify taking that pic.

That’s justification enough to do so!

So tempting, one day I will just because.....I mean how many people don't have a asshole lol

I wonder if you could moon people and get in trouble still. After all, you arent showing your asshole anymore

Hey, wait, doesn't that mean the stoma-thingy is your asshole now?! Dirty bastard is showing his asshole on reddit/s

Oh no my secret plan exposed!

Does the stoma pass gass as well as solids/liquids?

And when you say your butt was seensewn shut.... What medical purpose did that serve?

I still urinate as normal, but gas and waste (and a lot of liquid) comes through the stoma, the ring you can see on the bag picture is a charcoal filter to allow gas out without smell. Th Large intestine(bowel) is what absorbs water in the body, so not having it means the waste is a lot more liquidly than normal, as the stoma team described it 'it's like an oatmeal consistency'.

My behind was sewn shut because they remove the bowel from there, basically they went in through the front of my body, detatch the bowel from the backside then remove what they needed too and the stoma is my intestine coming out of my stomach turned inside out.

Would have to sew the behind hole shut because was nothing connected to it anymore.

do you mind sharing how you stay hydrated now? or make sure you get your micronutrients?

This was one of the biggest 'teachings' they gave me while in hospital after the surgery, I can get dehydrated super easy now. I have a Stoma team I can contact for the rest of my life for any issues but they taught me and gave me a book with info.

Basically I have a giant water bottle filled with water next to me at all times, I'm basically always sipping water, I also have hydralyte tablets for when I wakeup in the morning, they dissolve in a glass of water and help with dehydration from overnight.

But yeah I'm constantly on the lookout for dehydration, before this I never even knew how important the bowel is to staying hydrated so guess I learnt something from it.

I'm so sorry you have to go through this. I find it almost impossible to stay hydrated even with bowels, I don't want to think about how hard it would be to have to drink so much water constantly.

I'll tell ya what, I'm fucking sick of how often I have to pee!

I'm constantly drinking to stay hydrated and drink more then the old 'recommended' of course but I'm always worried about getting dehydrated so I drink even more and end up peeing a lot which is annoying but better than dehydration I guess.

I have testicular cancer that has created tumors that recur every year. How do you deal with moving forward with your life even though it could come back at any moment and do you ever lose your motivation for learning new things like I have?

Sorry to hear mate and honestly I'm with you in lacking motivation. Depression has taken hold and the only way I get through the day most of the time is distractions.

I've even stopped making friends because I feel like it would be a dick move to make a friend and then up and die on them.

But there are some good times, spent with true friends who are more then happy to just listen not try and fix an issue but just listen, those people get me through life more than anything else.

I can't say I have an answer for you mate, I see my shrink weekly (highly recommend that) and just take it one day at a time, some days are really really bad, other days are just okay, but for me at least distraction is the key, movies, games, tv shows, whatever, I've got into VR as well just to experience worlds I can't irl which is a major help for distracting from it all.

I feel like I shouldn't be giving advise on this as I mean last night for example I just broke down crying randomly, there is no fix I feel. Sorry mate.

Dude I relate a lot to everything you’re saying and I’m also in weekly therapy, and I guess I just appreciate you sticking your hand out above all else. I really haven’t reached out to new people, either, because having to explain my health situation over and over again to people is just exhausting. But it’s nice to know someone else out there feels just as defeated by these things.

I wish you the best of luck in your treatment journey and hope that you are able to live comfortably in the meantime and eventually experience some healing. It may seem like there’s no end in sight, but I, like you, have been emboldened by the meaningful conversations I’ve had with the people in my life who have been by my side thru this.

And don’t worry about your advice, my guy, I’ve lost a lot of sleep crying about my own shit and honestly I just appreciate receiving a kind reply from someone who gets what it’s like to have consistent health issues. I am going to have a less terrible night because of this! Thank you!

Thanks mate, it means a lot. It's a ratshit world and we got dealt a bad hand too, some people will never understand it and I admit I've lost some friends over it 'cause I complain too much' but imo those weren't real friends in the end.

It's nice to know there are others, even if we deal with different shit it's still shit, I'm a firm believer in 'your problems are most important to you' 'mine are to me' no one has it better or worse and fuck anyone that says 'you should be happy you don't have X'.

Look after yourself mate, that's what counts.

Thanks for doing this AMA.

Did you have difficulty getting your doctor to take your symptoms seriously?

How long did you have those telltale symptoms (such as the cramps you mentioned) before you brought them up to a doctor?

Were there factors that made it more likely for you to develop bowel cancer?

Did you have the choice to call a cab or some other service, instead of going without sedation?

How painful was colonoscopy without being sedated?

What work did you do before the procedure or illness, and what do you do now? How do you fund any out-of-pocket costs?

No worries, honestly I did this in hopes that maybe someone will think 'aye maybe I should get that checked'.

I have an amazing GP, been seeing them for over 10 years now, when I first told her about blood she told me it was normal to have some blood so I thought it was just that and it is normal to randomly get a little. It took 2 years for me to get to the point were I asked her seriously for more help, basically when it got to the point that well I was painting the toilet red I went to my GP and said 'this isn't right, something is wrong' and she acted straight away referring me to get a colonoscopy, however she said it's probably an ulcer, when I called her after the colonoscopy and told her it was cancer she kept apologising and randomly does to this day, but I don't blame her at all because when I full on asked it to be looked into she did.

No factors or family history or anything, completely random, the surgeons and such say I'm lucky because medically my age is 'young' as I said this is normal for people 80+ but I'm also unlucky in that I got it so um 'yay'?

I couldn't call a cab or uber or such for the colonoscopy, the hospital doesn't let you even walk out of the building without someone signing a release and that I'm in their care which clearly a random taxi/uber driver wouldn't do.

The colonoscopies were weird, the Anaesthetist was there but when told I wasn't being put under they literally went "Well I don't need to even be here" laughed and walked out. They use plenty of lube (of course) so it doesn't hurt going in, what hurt was they actually blow gas into your bowels via the camera tube to inflate them for better vision, the first time I didn't look at the screen, I just looked down and thought happy thoughts but every time they blew more gas in it felt really uncomfortable, not too painful but very very uncomfortable and it was a painful when fully 'expanded', the second time I made the mistake of looking at the screen and that panicked me a bit more (I dunno why, made it more real?) and while it was interesting it scared me so I clenched and the doctor had to talk to me to calm me down so they could resume as I clenched so hard they couldn't move the camera.

I used to work retail but am now on a permanent disability pension, I've had a lot of complications since the surgery and am still dealing with more and the downside of the bag is it ties me to my home, if I go out and eat and it fills up I'd have problems.

I'm in Australia so we have good health care but the amount of medication I have to take these days and follow-ups are costing me around $100 a week, something I shouldn't complain about I know because I did look it up and if I was in the US I'd be well over 200k in debt, but on a disability pension that is a lot to me now and there is a lot of restrictions on what I can do (can't lift anything over 5kg, reaching high can cause a 'burst' of the bag etc

I’m sorry you’ve had to deal with this. I simply can’t imagine it, and I don’t know if this kind of adversity is something I could deal with myself. Is there anything you need? Do you have anyone to talk to or any way to unwind and take your mind off this stuff? Any friends?

Not in real life, I live in a different state to my best friend and otherwise my friends are across the world, I have 1 friend I can say whatever too and he just listens which is nice, sometimes I don't want a fix just someone to vent too.

I have good days and have bad days, sadly a lot more bad then good and complications keep happening which is just exhausting and costly.

I keep saying if my body doesn't stop trying to kill me I'll kill it, which is half jokingly and half 'I'm so tired of this all'.

But I see my doctor weekly that helps too, just.....have to live with it, living alone and having no family doesn't help either but nothing I can do about that.

Do you have any hobbies? Maybe find a discord server for a hobby group? There’s no shame in reaching out to friends and telling them you’re struggling and need some support. You can message me here as well and I’ll respond as able.

Sadly my old hobbies (model planes etc) cost too much these days and I've adapted the mindset of not owning many things (sold off a lot of my stuff before my surgery) because it feels mean that soemone someday will have to go through my things and get rid of it all.

My only remaining 'hobby' per say is gaming which on the upside of being stuck at home so much I can do more of atleast.

Support groups aren't my thing, I feel wrong being there even if I know I shouldn't, I'm more happy on my own with just a couple of very close friends then having a bunch of people to talk too I guess.

There are times that I do miss making new friends though, but I refuse too because it's wrong to make a friend then up and die on them, I know everyone will say that's dumb (and many have) but I can't break that mindset, atleast not yet.

What are your thoughts on your love life or sex life? How would you deal with the accessories if you got the chance to get laid?

I won't have one, I've given up on that. I find myself disgusting with it and while the stoma team said I can have a normal love life (even mentioned in a pamphlet that 'lingerie can cover the bag' lol. I can't bring myself to even think of being with someone.

I hate my body now and I feel disgusting and don't want anyone to ever have to see the things I have to do or such.

So yeah, I've just decided that that's it for me, it sucks sometimes and I hate the thought sometimes but yeah, gotta face facts someday.

What do you say when someone says "shut your ass up" ?

Jk

Hope you get well soon <3

Oh, haven't had that one yet! I do tell people I can't be an asshole because I don't have one anymore.

OP, thank you for opening up about this. I have known many people who have to deal with stomas, and I have max respect for you. I do have a question though, and it’s more for curiosity....

If you were to touch or rub something against your stoma, do you feel it? Maybe not pain so much, but when someone (or myself) accidentally pokes inside my belly button, it makes me uncomfortable. This is how I imagine it, I’d love your input!

Good luck beating the cancer. I appreciate you bringing this awareness.

Actually no I don't feel it at all, the stoma is actually my intestine turned inside out and there are no pain receptors etc inside the intestine so I don't feel anything when like I have a shower without the bag on and touch it, I feel that it's always 'wet' with my fingers after I dry myself but it itself has no sensation.

However the area of the stoma like around it can throb sometimes and be painful but the actual stoma itself nope, it's kinda cool/weird.

Thank you so much for your response! I’ve heard there are no pain receptors inside the intestines, but sometimes when I’m on the toilet I feel like they do (haha).

I wish you the best, and thank you for being so open about this. Awareness around things like this helps with the stigma, and I really appreciate you being honest and open about something that a lot of people wouldn’t.

Happy to answer and I agree there is a weird stigma about things that it's good to have knowledge of, humanity be weird!

I've thought about the whole 'feeling when on the toilet' thing too and as I said the throbbing around it I feel so I wonder if it's other things moving inside us that gives the sensation or not, it's a weird one, like when I had the colonoscopy's they didn't hurt at all until they pumped co2 into me to inflate the area, then I sure as hell felt it! but maybe that's from it stretching or moving other things inside us?

My mother has had cancer for 10 years now. Only kind with that 'type/form's of cancer. She's had 4 different procedures, stable, unstable, and so on. She's in that same mindset as you, that 'what if/when'.

I get it. I do. I've been taking care of her for years now, and trust me, this isn't living. You, she, fought and survived, keep a close eye on it, and live.

Perhaps a talk group will help or a psychiatrist?

And don't overthink about the bag, noone will ever judge you for it, if they knew what you've been through.

That you're still here, is all that matters, doesn't it?

That I'm still here.....is good, but sometimes not. I'm constantly disgusted in myself and the bag, I was a very clean person before surgery and now I have this constant disgusting thing attached to the front of me.

While in hospital for the few weeks I regretted my choice and wanted to die, I told the surgeons I should have let the cancer kill me.

These days, I'm a little better, I speak with my shrink weekly and they work on not 'fixing' me but 'getting me okay to live with myself', which is hard.

I also feel horrible guilt for the people who support me, and even the kindness I'm receiving here, everyone has their issues and I don't believe anyone's issues are worse than someone else's, yours matter most to you mine matter most to me and such.

I can relate to your mother but I also can understand your point of view, the thing I hate (no offense intended) is the whole 'fight' thing people use for cancer, there was no fight, I had no way to battle it, I just did as doctors said, they are who fought it for me and I'll never be able to thank them enough.

For now...I dunno, as with your mother, I'm scared every day, what if, when, it's not living I agree but I can't see a way to stop thinking that way after going through it.

I have no family personally but it does make me happy to know your mother has you and trust me when I say I'm 100% sure she loves you and what you do for her to help.

I'll be a bit blunt, but realism is what you need, not sweet talk.

Honestly, can you truly say, that you're absolutely disgusted by the bag, or is it, that you're extremely focused on the bag, which makes it absolutely disgusting?

Let's be honest, it's the latter I think.

Because that bag, seeing it, reminds you of what life was like, and is like. It's a direct confrontation to what you've been through and have to live with. This is what makes it absolutely disgusting for you in my opinion.

And that's ok. You don't have to love it, but you don't have to hate it. You're not a walking bag. You're you, but you just have a bag with you. It doesn't make you any less as a whole.

And it's not that you're broken, or have to be fixed. You don't. And you don't have 'to live with yourself', you just have to accept yourself, as you are, as you were, as you will be.

I'm sorry if I'm blunt or come across harsh, it's not my intention. I know how it is to be told 'its ok', and how shallow that comes across. I know it's not easy. I know it's not impossible, either, but it is hard.

As for cleanliness, aslong as you take care of yourself, you'll be as clean, as you've ever been. You know what unhygienic is, looks like, and they you're not unhygienic, because of this.

And i type, respond, because I want to. Not because I feel obligated to. Not because I pitty you. But because I care, that's why.

The thing you hate, there was no fight, let me put it this way; have you ever seen or heard about someone with cancer, and them giving up? Then it's all over. Why? Because while yes, the doctors did all the physical work, you're doing all the mental work. You did and do allot more then you realize, and give yourself credit for. You know this.

And so does my mom. I remember the day she walked into the neurologists room, and the doctor just looked at her 'how are you walking?'

And im looking at your post, and the only thing I thought is, i have respect for that person posting this.

Don't give up, youve come so far already, and you'll come allot further!

I don't even consider this harsh, I take honesty well so nothing wrong with saying what you feel.

The bag is....part of me now, I know this, but the concept does make me feel disgusting, even back when things were 'normal' I was so obsessed with being clean that after going to the toilet and wiping I'd have a shower after as well to make sure I was clean.

But that's just me, I came to accept that side of me long ago. I do agree the bag is a reminder, a really shitty (no pun intended) reminder and hopefully one day I'll get past that.

I seriously thank you for your blunt honesty, I find nothing wrong with it and don't expect anyone to 'coddle' me or such, I may have given up on a relationship but I'm still living day by day, it's harder some days than others but I'm still here trying and intend too. the fear takes hold sometimes and I breakdown but I pick myself up eventually and I hope I continue too.

Thanks again, I'll remember your words.

Sorry for your suffering. I hope you positive energy. Did they tell you what caused or contributed to getting the cancer by any chance?

Sadly not, they have no idea what could have caused it, the surgeon said I must have a 'predisposition' to cancer due to the amount they found for someone so young (medically) which to be honest isn't the most comforting thing to hear.

But otherwise they have no idea, just unlucky.

I want to know more about the poop bags. What are they made out of? How much do they cost? Do they come in bulk?

Did you end up getting 2nd degree chemical burns because of the acidity of the... poop? Like, I don’t know what’s going on there. I’m assuming it has to do with digestion — like, is your stomach dumping into your bag? I’m so ignorant, I’m sorry.

Also, and this might be hugely inappropriate, but your butt plight reminded me of this: https://m.youtube.com/watch?v=UcwfEMdV-aM

I’m sorry things are rough for you right now, friend.

Okay so I'm lucky, I live in Australia we have a pretty good healthcare system which covers the costs of my bags and other accessories needed. My monthly items I require would cost around $900 but the government pays it due to it being a permanent thing, every month I have to make an order from the Stoma association for my products and it does show the 'normal cost' but it gets subsidised (thank god).

The bag is made of plastic and can be emptied (is ones that you don't empty too) it has a charcoal filter for gas to pass through with no smell, this is the actual bag I use https://www.ainscorp.com.au/ileo-confidence-natural-soft-convex.html along with a bunch of accessories, the stoma hole is cut to the size of my stoma then it sticks onto the skin.

I got the burns because I have very little intestines left, basically when I eat it's coming out of me within an hour or so so yeah still has acidity to it. At first I was using different bags (is about 100 types, it's crazy) and because my stoma output hole points down not straight the waste would be pushed against the seal of the bag and eventually break the seal and surround my stoma and the skin would burn, it took months to find a good solution which my stoma team worked with me for. Now along with that bag linked I also use:

A barrier ring which attaches to the bag which makes it push into my skin more: https://www.hollister.com.au/en-au/products/ostomy-care-products/ostomy-accessories/barrier-rings-and-strips/adapt-ceraring-convex-barrier-rings

A stoma collar which directs the output forward instead of down: https://www.ainscorp.com.au/stoma-collar.html

Range extenders to add extra support so it won't burst: https://products.coloplast.com.au/coloplast/ostomy-care/brava/brava-tape/brava-elastic-tape/brava-elastic-tape-belt/

and a belt which clips onto the bag giving it a tighter fit around the stoma: https://www.hollister.com.au/en-au/products/ostomy-care-products/ostomy-accessories/ostomy-belts/adapt-ostomy-belt

Thank you for taking the time to do an AMA. Has the stoma affected your sleeping habits in any way? Have you ever been a stomach sleeper? Do you ever have to wake up in the middle of the night to empty your bag?

It affected it in a major way actually, I was a stoma sleeper and I can't anymore and even months later it sucks I still don't feel as comfortable sleeping and I wakeup a lot.

I empty the bag before bed every night and by morning it will be full no question, normally just liquids but I've started eating dinner earlier in hopes it will fill less overnight.

I have woken up to bursts (which needless to say are the most disgusting thing possible imo) and I've woken up to empty the bag before, when I first got it I'd set an alarm and only sleep for 4 hours then wakeup and empty it, now days I can normally get through a full night, then I take it off in the morning, have a shower without it and put on a new one straight after my shower, before even drying myself because I have no control over when it will go active, so I set everything up ready to be put on the second I get out of the shower, try just were needed put it on then do the normal routine.

Back to your main question with sleep, yes very yes it's fucked my sleep and I hate it for that, I liked sleep dammit!

When you have the colostomy bag on properly does is smell?

No, it was a charcoal filter to let gas escape and stops the smell, I also have a no smell liquid I can put in the bags for when changing/emptying them to reduce the smell, but it's never as bad as the old fashioned going to the toilet, not sure why but it never smells like poop, can smell bad but not the same.

So in some ways it's a lot less gross than assholes and conventional pooping?

Yes and no, no smell is great but I now have to sit in front of my toilet and empty the bag into the toilet looking directly at it, so that's super gross to me.

Upsides and downsides I guess.

Was there never an option for a j-pouch?

It was considered before the first surgery to remove the tumour, they said they could do a j-pouch if needed, but after they removed the tumour they said there is just too much cancer (42 cancerous polyps) that it's best to remove it all.

Thanks for sharing your story. I don't have any good questions so I'll ask this, what's your favorite pudding flavour?

Believe it or not I've never had it, I dunno ere to even get it in Australia lol

Can't say you're missing out unless you can get your hands on pistachio flavour. It's fake as hell but still pretty damn good.

Favourite timtam?

Salted Caramel for the win (but that's my fav in anything that has salted caramel flavour).

My grandmother had colon cancer, but they treated her with radiation therapy. So maybe a different sort of cancer. I appreciate you doing this; as we were never allowed to talk to her about it but I'm supposed to be "alert for symptoms". So my question now is; Did you have to change your diet? Oh. And what happens if you get a stomach bug? Will it mess up things if you vomit?

Sorry to hear about your grandmother, it seems a bit silly to not tal about it, I decided even before my surgery I don't care what my friends asked if they wanted to know something they can, if they don't fine, that's why I don't mind doing this AMA because I think it's good knowledge to have out there and while it's not super rare it's not super common either.

I had to see a dietician before and after the surgery there was some pretty big things that had to change (well little in a way), the hole is small now and the biggest threat is clogging it, so something like corn I can no longer eat (which was one of my favourite foods!).

Peas I have to make sure they are well chewed, well everything I have to chew more, while in hospital for the few weeks after surgery I actually got a blockage (gotta love they say have no corn then hospital food had corn in it!), my stomach swelled and I didn't eat for days, they ended up having to put a tube in via my stoma all the way into my stomach to 'unclog' it which well it wasn't pleasant.

These days I have to drink a lot of water to stay hydrated as it's your bowel that absorbs most of the water your body needs and yeah I have a list of things to avoid like corn, any form of takeout of such will go through me like nothing, a good example of this is a personal pizza, if I'm eating it over say 30min just slowly it will start coming out of me before I've finished eating it, simply because I have so little intestines left.

I also have to be careful of things that will make the output too liquidy because that means I'm losing even more water so one thing I found for example Beef Stroganoff doesn't agree with the stoma and will come out super quick.

The dietitian basically told me it changes person to person so every meal I try I have to see how my body reacts and how quickly it comes out and such.

I have have powdered stuff to mix and eat just before food if I know it's something that will come out super liquidy to thicken it up a bit.

As for if I get sick and vomit, no change there, but diarrhea is no longer a thing because well it's always very loose.

what happens to your butt now?

Nothing, it was sewn shut from the inside so it's just smooth on the outside now that it's healed, it's weird but yeah no hole!

What bags do you wear? I like the Convatec Durahesives.

Oh man, it took months to find a good combo for me, I updated my OP with the pic of the problems when I first got out of hospital, but these days I now have to use:

Salts Confidence Natural Soft Convex Bag Adapt CeraRing convex barrier rings Salts Stoma Collar Brava Elastic Tape Belt (range extender) Adapt Ostomy Belt

Ultimate bodge job but least my skin isn't burning anymore.

Why did you do it without sedation instead of being placed in a recovery ward for however long it took to come down?

They don't offer that for colonoscopies, sedation wears off sleep wise quickly but for the next 24 hours your judgement can be impaired, but they don't do overnight stays for a colonoscopy so my choice was to have someone pick me up and drop me home (impossible, no family at all and all my friends live in other states) or go without.

Do you wish there was an app for how much money you have saved by not needing to buy toilet paper? All kissing aside, I wish you the best and may your path forward be as smooth as your crack.

See I thought this at first too, but then I learnt how wrong I was, I use as much if not more toilet paper now, because I have to empty the bags and clean them when I empty it which I use toilet paper for and the bags fill about 5 times a day so yeah I'm using more now then I did before I'm pretty sure.

So I could only look at that picture for a split second, but how exactly does that work? Does teh red bit move or can you unplug it? Just now learned what a stoma is so I do not get how stuff comes out of it.

It's actually my intestine turned inside out and sewn into the skin, it can't move and just has the little hole were waste comes out.

I have no control over when waste comes out that's why I always have a bag attached (bar when I shower which can be annoying if it decides to go active during one! as I just have to wait it out).

Because the bowel is what absorbs water it's a lot more liquidy than normal stool, so it just comes out and fills the bag, the only way I know is by feeling the bag starting to weigh a bit so I empty it.

The bag has about a 1" sticky diameter around the stoma hole and it sticks real good plus I have 'range extenders' which give extra support so I don't have a 'burst' (have had them happen from doing things I'm not meant too, trust me that is horrible) and the bag also has 2 clips which clip onto a belt I wear to give it even more support.

What’s dating like? Do you want to get married and have kids one day?

After the surgery I decided I won't date or have a relationship again.

I disgust myself with this thing attached too me, I don't want to bother or have anyone else see it.

I did have hopes of having kids one day when I was younger, but the combo of my age and now this I have just decided it won't happen and accepted that.

I'm not bitter about it or anything, it's just something I decided is part of my life.

Can you be an asshole without an asshole?

Nar I'm just a true blue Aussie cunt now ;)