IAmA ostomate, my butthole is located to the right of my belly button. AMA

What do females think?

My wife doesn't particularly care, other than that it means I can be much more active now, and hers is the only opinion that truly matters (:

What does your wife think about it?

Wife doesn't really care. She doesn't want to touch it though :(

A NSFW tag might be helpful for the picture (not sure what other users think)

Also, question for you:

My friend also has Crohn's. Is it inevitable that he will have to get the same operation as your picture shows? Or is it something that only really happens if it's a serious case?

I sincerely hope everything is okay, as there have been a couple of times he has had to go through testing and he always says how much it stinks :/

It's only if it's a serious case, and even in mine, there were some less-invasive options with a less-chance of working that I could've gone for. The vast majority of "worst case" Crohn's people out there can be treated with TNF-a immunosuppressants - those didn't work for me, so my options were to have a couple of resections done (they remove chunks of your intestine and sew the remaining parts back together) or have this done. What I have is also potentially reversible (for the time being), although reversing an ileostomy in CD patients is generally considered a high-risk operation.

In what may be a very, very dumb question, but why couldn't they just re route this somewhere else? like towards your back or lower down? You also mentioned they would sew you up down their in 6-12 months, why can't they just re-route this back down there? Basically, why did they have to do it in that exact spot, and can it be re-routed somewhere else?

As-is, because there's no control over the output. The simple answer is "because they don't want me shitting myself all the time". There are solutions involving re-working the intestines (it's called a j-pouch) so that things can be kept internal.

Do you randomly poop out of there? Is there any control as to preventing the poop?

Yes, the only control I have is avoiding things that increase output - not taking deep breaths, not contracting my abdominal muscles

Do you have an increased fear of impact to your stomach? Do you get weird feelings/sensations around the intestine from your skin/muscles? Is your anus abnormally clean now?

Yeeeaaaahh getting punched in the stoma, especially right now as I've still got (not visible in picture) stitches in it, would probably mean a hospital trip.

No weird feelings around the intestine, but the skin around it can develop a rash which itches.

And I haven't looked at my anus recently enough to know.

I'm surprised how open you are about it all. Even your username and jokes you're making about it. Quick and simple question here. Does it effect you life in many negative ways or is it something you quickly adapted to?

Hasn't really affected my life negatively at all.

Being able to laugh at things most people think is terrible is the easiest way to spend life happy.

Why did I zoom into that.

Edit: ok my question. Do you feel the regular pleasure from passing a bowel as how you did when your butthole was inbetween your butt?

No, I feel a different kind of pleasure sometimes though... similar to being really gassy and then letting out a monstrous fart.

I thought they put the hole on the side of your body not in front above the belly button... or are you able to choose? What would make you go back to natural pooping? Do you miss going to the bathroom? Also do you experience stoumch aches anymore?

You can kinda sorta choose, but I think it's generally in front.

I'd go back to natural pooping if my GI doctors said "Your Crohn's is gone, and we can reverse this ileostomy with minimal risk".

I still go to the bathroom somewhat regularly to empty my bag, and of course I still have to piss.

I don't usually get stomach aches per se, but I suppose I could still theoretically get them.

So what happens to your water retention if you go on with this? Without a large intestine channel you wouldnt be able to retain much water.

Would you just have to drink alot?

Yeah, I have to consume more fluids than normal... not a /lot/ more though.

So every time you shit... you're also planking?

I lol'd the first time someone made that joke, unfortunately you are not that someone.

So i take it swimming is out of the question then eh?

There are no issues with swimming at all, actually.

Have you ever heard of this: http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.8343767/

The preliminary studies seemed to have positive results.

Heard of that, didn't try it. Also it looks like that's much more targeted at UC than CD.

Do you have a significantly higher risk of dehydration?

I wouldn't say "significantly" higher, but yes, there is an increased risk of dehydration and I have to drink more fluids than I did before on account of it.

Ever heard of side splitting?

Nope

couldnt you just change your diet drastically? im sure youve tried all that tho

I tried some dietary changes, some of them drastic. They didn't help a whole lot, and honestly, I'd rather have an ileostomy than only be allowed fruits, nuts, veggies, and meat for the rest of my life :/

ha i understand but what about a temporary long term (month? easier said than done i know) juice fast? might that help? it supposedly helps alot of other things oh well good luck with your shit!

can you see your intestine? icky

The temporary ileostomy is what might help - it's essentially a total fast on the areas affected by CD.

The red stuff in the picture? That /is/ my intestine.