Have you told ANYONE else what it's REALLY like to live with a pouch?

I haven't. Not one person. No one knows what I go through behind closed doors. Not my wife. Not my best friend. Not my pastor. My doctor has heard the worst, but not the mental and emotional stuff. God has seen and heard it all. But no living person has heard all the details. It's too personal, embarassing, gross, depressing. My secret life. Wait, I've spilled my guts to total strangers here at this site. Otherwise unspeakable and personal details. We are connected, aren't we. Thank you, I guess.

I think it would be good for you to tell someone. It really is theraputic for me to tell my boyfriend straight up what is going on, and trust me, I don't spare the gross details. I thought he would be grossed out, but he wasn't, it only brought us closer and let him understand where I'm coming from and what its like. You know what would be great? You should find a support group where you live, that way, you could honestly express how you feel face to face, and they would understand. But, it's all a matter of personal comfort, and I wish you the best of luck in whatever you do.

Sure, my husband knows and my kids do too. And of course, all the folks here count as people too.

But, telling other people may not be the same thing as them understanding. I was diagnosed with UC 35 years ago, when I was 15 and just going steady with my husband. He's been with me through it all and it wasn't until about 5 years after my surgery that he told ME that he now finally understood what I went through. That was when HE was diagnosed with UC.

Even telling us here is not really the same. We can empathize, but we really cannot put ourselves in your shoes because we don't with with your other life stresses.

That said, the best thing about a community like this is that we do all share a common thread, even if my pain is not like your pain. I think we at least GET IT. This can be a very good place to let it spill without worrying about being indelicate. Sometimes it is easier than the face-to-face groups. We'll help you where we can. But I agree with Chelsea, you need someone that you can feel OK with telling the truth.

Jan

Yup- I tell everyone ALL the gory details.

My wife thinks I have a big mouth, but like Chelsea said, it's theraputic.

When I was MUCH younger, it was a VERY guarded secret, and felt the exact same way as you.

Now, I think I scare people off with information overload- careful when you ask ME about my situation- you'll get WAY more information than you bargained for!

//Todd

I would have no problem telling someone everything. No one has never asked. I have always been an open book. It's like they think it is taboo and would make me uncomfortable, or for that matter them uncomfortable. I wish people would inquire. If they did it would make me feel better. It's obvious that people avoid the topic and that actually makes it worse, like I'm weird or am different than them. I do have one friend who is really cool about it. He makes fun of me about going to the bathroom and stuff like that. It actually makes me feel better about my situation because he has accepted it and doesn't avoid the topic. The best comment he ever made was when I went to dinner at his home with a group of friends and I still had my ostomy. His wife just set a big dinner out on the table and he looked at me and said "I hope you brought your BIG bag." It was hilarious and it made me feel accepted.

I have only had step one of the three steps to the pouch so far, but if someone asks I will tell them exactly what I had done and what will happen. Then I tell them about my ostomy ... so far some people are grossed out and others are shocked like I was when I found out this can happen to people and did happen to me. I didnt know in advance about the whole situation since I was told my the GI doc that I was getting better and didnt need surgery till I woke up from a colonoscopy to a surgen in the room with me.I have several friends that are understanding or as much as they can be not having gone through the ~fun~ of UC. If someone doesnt want to know exactly what happend. Then they best not ask what really happend while I was out of work for those 3 months.

I tell my boyfriend all about my pouch. He is very understanding and listens to me even when I'm a blubbery mess. We had broken up for like a year and he took me back right after I had my 1st step surgery, ostomy bag and all.

He wishes me luck before each bathroom trip, asks me how my butt is, reminds me to take my medicine, makes fun of my stinky poo.. I can tell him all my funny stories about waiting for someone to flush the toilet in the public bathroom before I let loose.. he is like the dream man for a toilet-ridden gal like me. He even came with me to one of my tests and got to see the inside of my butt.. lol.

I feel much better after discussing my problems with him. I'll admit there are some things I don't tell him.. like when I get real upset about silly things I feel kind of stupid discussing it, but most things feel really great to get off my chest.

Good Luck!

- Sarah

Sure- I have nothing to be ashamed of. I don't advertise the explicit details, but my girlfriend of six months knows, as well as my closest friends. I found that talking about it was tremendously helpful and my friends have been insanely supportive. As far as my girlfriend goes, if I'm going to spend my life with her she has to know what she's getting involved with. She was tremendously understanding, asked some good questions and accepted it. We have nothing to be ashamed of- we've gotten through something very difficult and have a few quirks as a result. Oh well...

For nearly 30 years I never dicussed my UC with anyone. I managed to go through school, play sports, date and everything else guys do growing up and only a handful of people that ever knew. I hated when my ill health was mentioned, and would get mad, irritated, embarassed and a host of other emotions whenever I HAD to talk about it. I didnt want sympathy from anyone and absolutely couldnt stand anyones pity. I just had it set in my mind that this was only MY problem, and only I could man up and deal with it.

I had no choice in letting others know about my pouch, and also, what caused me to have to have it. Ever since my op, I talk about it openly...friends, family, co-workers, aquaintences...Im comfortable talking about it to just about anyone. Without opening up, I never would have been able to get the strength and support from my family and friends that I did. They helped me out tremendously (and still are!)

Im really proud to be able to sit here right now, pain free...with no urgency, and feeling good and dont mind at all talking to those who want to know more about it (though Im sure my girlfriend would like me to find a new topic from time to time...lol)

Bill

I'd have to say no, I haven't really told anyone what it's actually like to live a day in my life. I've told my parents most of it, but for some reason I just don't like going into all the details - I think because I feel like they won't understand anyways, and I hate the look people get in their eyes when you know they just feel really sorry for you.
Pretty much everyone knows that I had my colon removed, and that they connected the parts back together (lol, very technical lingo).
Everyone knows that i'm still 'recovering', and I say 'oh, i'm having a bad day'...which I think they assume means I have pain, I don't actually tell them what's going on. I think I'm just a bit embarassed, I've actually been called 'prissy' by my friends (which doesn't offend me - I'm the girl that doesn't like to get dirty or cold and I hate bugs). A lot of times I gloss over things because I don't want to be the negative friend that complains all the time!
One of the reasons I like this site so much is that people UNDERSTAND how i feel, it really makes all the differene in the world to me that people know what I'm going through, they've done it too, it makes me feel not so alone. Here, you're different if you have a colon; not if you're missing it!

If they ask, I will talk! My policy is, "don't ask the question if you really don't wanna know the answer!".

I have NOTHING to be ashamed of, nor anything to hide or feel that I have to hide it. I don't exactly just volunteer it, but, if they ask ~ I'll tell you as much or as little as anyone wants to know.

I discussed my UC problems more extensively than relaying my J-Pouch experiences. I periodically grumble to my family that the J-Pouch sometimes leaves a bit to be desired (but I still realize that it is leaps and bounds better than the former gory bouts of UC).

I have never provided friends with much detail or ever really complained about it. All my friends really know is that I need to use the bathroom with greater frequency than a coloned individual. I do get the odd, good natured comment about noise or the stink, but no one has ever asked for detail. If they did, I'd be happy to disclose details.

I tell My wife, doctor, mom everything..

It's hard not to talk about it. But I found out that when I talked about it too much - how miserable I was, in pain all the time - it squashed my good attitude a bit. I had a real reason to feel down and I still do; I'm five weeks post takedown and still enduring constant, 24-hour bathroom trips, butt burn, dilations, etc. I feel impatient because recovery is so slow, I'm starting to wonder if this is working at all.
But TALKING about how down I am all the time only made me feel more down. I know my wife is sick of it. There's probably a happy (unhappy?) medium, for me at least.

I'm surprised so many feel so free to describe the emotional trauma of waking up finding a load in their shorts and having to clean up the mess, including the related spots on the sheets. Or even worse, the worry about this happening on Christman eve when you're staying over at your sister in law's home. The constant need to spit on a piece of toilet paper to try to wash up because the butt burn is so bad you walk funny. The awful feelings related to having to scrub toilets everywhere you go after you're done because you don't want to leave such a mess for the next person. Nothing to be ashamed of? Tell them as much as they want to know? I don't think so. I guess I'm just a little more private than some of you.

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