Finding Connection and Support in Ostomy Conversations

Hi there, all you ostomy freaks!!!

Shitting in a bag is no fun, but hey, if you are both shitting in a bag, then it really can be fun. But many people I write to are so alone, and it saddens me. I am also alone, but I hastily add, not lonely, not as much anyway!!!

So many people are afraid of contact that they hide themselves from the public. They pretend that everything is okay, everything is OK actually, as long as no other humans are involved. They say they are not scared, that this is the life they prefer. Well, I know now that many people are desperate for human contact, and I'm not talking about deep philosophical conversation.

The dreaded word, "Sex," is hidden deep in there, never to be spoken for fear of embarrassment or shame. In the company of real-life friends, the conversation will get around to sex, boyfriends, girlfriends, fuck buddies, etc., etc. We have nothing to contribute, usually.

I have yet to meet with someone from the site, but I have made some friends and just might meet someone, finally!!! I have some great email conversations about every subject with amazing people. I have broached the subject of sex, and I've found women to be very receptive to honest, open conversation about their needs and desires and, of course, their fears. Fears of the non-ostomate. ME TOO!!!

My self-esteem and sense of self-worth have grown tremendously since I have been having these conversations.

Sex is one of our biggest losses, for many of us. Some of us no longer have the organs required for the act, but there are many ways to express love for another human being. Our whole body is an erogenous zone, and we can still experience love and pleasure. Just snuggling and cuddling can be a very sensual experience and can change the way we look at our world. I'm still waiting for that aspect of online conversation to develop!!! But I know that it can become real for all of us.

I am hoping to feel this closeness at some point in the near future. I get so much good, warm feelings from speaking to women about simple silly things. Just the contact is wonderful. I have to be so careful when speaking to people face to face and always worry about my bag, no matter what. Online there are no such fears.

The conversations are just harmless honesty between people who will, realistically, probably never meet. But we don't need to meet to feel love and empathy for the people we talk to.

This is to simply express my hope that we can all at some point bump into a kindred spirit who can uplift our souls and damaged bodies above the depressing world of ostomy loneliness.

Keep on writing to those anonymous strong souls out there, your other half is there to complete your own picture.

If your partner ran a mile, try to be a little empathetic and compassionate. They are terrified of your disease, not you (usually!!!). They can be confused and afraid of what the future might bring. They were made this way, and they have a right to be scared. If the person can't sleep with you anymore, then what's the point of him/her staying? If your ostomy makes them cringe, then that is just how it is, and they probably can't change that.

Of course, some of them are just lazy, uncaring assholes, no sympathy for them, just pity for their selfishness and lack of empathy for someone they have purported to love or to love until death!!!

Find a friend and just let it rip, let it all out, mutually, the best medicine!!

Magoo.

I like this blog... it covers many things... about the stress the shyte bag brings... about trying to understand how some of us are... about that lovemaking thing!!!... Have I gone too far... We rely on each other for lots of things... bags, pouches, and stoma rings... It's nice to know that people hear... it helps to overcome fear... Keep talking all... it's really sweet... and one day you might even meet...

Thank you for the comments, my friend. People just don't get a chance to go on about their trials and tribulations! I know that this site and the people on it have allowed me to delve into all the fears and hidden terrors that follow me... used to follow me. No more of that. I know that I can say anything and hopefully will not be judged too harshly. I think that speaking openly, especially if you can make just one friend with whom you can connect and talk to with genuine honesty... this is the holy grail, even one person. Over 7 or 8 months, I have run into several people who were very helpful. I have, however, found one person who is definitely a kindred spirit and we may even meet? This makes me happier than I've been in a long time. Magoo.

Well, Mr. Magoo, you certainly know how I feel about things. You couldn't have said more true words. Nice!

Thank you, Professor (you look very professorial with those glasses, lol). Talk is cheap! It costs nothing, but it is really the best tonic. Mr. Magoo

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

I am a 60-year-old woman who is vain and has had a hard time dealing with just getting older. Because of my Crohn's at 43, I get a bag on my stomach. I sometimes go to an ostomy support group, and I don't really find it all that supportive. I would love to talk about how much I hate this thing! But all you get from some old people is that you are lucky you are alive. That is not always so comforting when you feel like you can never date or have sex again. Who wants to have sex with an old lady with a bag of poop on her stomach? The thing about worrying about talking to people face to face and hoping the bag doesn't do anything embarrassing or worrying if the wrong person at work finds out about the bag and spreads it all over work. Just like most people with a bag, it is something that one must deal with on a daily basis.

Hey Fran, I'm not vain, but I do like to look as nice as possible. I have a hard time with this thing too. I had to do the same thing as Mooza with your pic. I don't believe there is any reason for you to be worried about your looks at all! You're a lot more active than I am, and I'm negative about this stoma thing also; but still managed to attract a gentleman. I have made some very good friends here. There are plenty on here (men) that can make you laugh, are fun, caring, interesting, and quite a few that share your frustrations and uncertainties. By the way, you don't just get that from old people. I hate this thing too (read some of my posts). I am learning how to deal with it better. I can see you have too, and your life has not stopped because of it. My answer to your sex question is: An old man with a bag of poop on his stomach? :) There are a lot of younger guys out there that think we older women are sexy. They are attracted to our intelligence. Heehee, I'm so happy I am out of office politics and away from high school mentality. That's one thing I don't need to worry about, are people at work. Try popping into chat. Anonmiem18, darious, Midgey, and a few others are in and out of there. If I see someone on I know, I usually check to see if they are in there. I'd write my e-mail here, but it's frowned upon. If we hook up in chat, I'll give it to you. Hugs

I find that no one understands; the friends I have become very frustrated with me. I tend to stay close to home, don't want to have an accident or a bursting of the bag in a public place.

Well, they think they do (understand). But people don't like to deal with problems for too long if they aren't theirs. Hell, even people with problems don't want to deal with them for too long, but eventually, you learn how to live with it. You have to, or you go crazy. But it's a bitch having to hide how you really feel because no one wants to listen. I guess that's what psychologists are for - they're paid to listen to anything you want to say. There's only a select few of the people in your life that can stick with you through thick and thin and really mean it. Doesn't mean that the others are bad, just means they aren't emotionally strong. Not too many people know how to deal with ongoing depression, illness, or just someone being different than the majority. I don't say norm because there is no such thing. I am in pain at the moment, so I will just say, hang in there. I'm considering making a forum just so people can bitch - it seems to be needed. :) Hugs

Yeah Zywie, we are all on the same page here. As you say, it is exhausting dealing with someone who is ill when it seems like there's no end to it. Most people just cannot deal with that and as you say, it's not their fault, that's just how they are made, it doesn't make them bad people. I know someone personally who has no clue how to deal with his wife's illness (not the belly). He cannot tune in to doctors and their various explanations for what's going on. It's complicated but he has fallen into the routine: go to the pharmacy, get meds, get his wife food, and make sure she goes to bed. He has no idea what the meds do but the docs prescribed them so it's OK. He is just overwhelmed by information overload and no real explanation from docs. Maintaining status quo is the goal and the best he can hope for right now. He deeply loves his wife and wants to help but he doesn't really know how, and I'm afraid he will give himself a heart attack with the stress it causes him. In this case, the wife does not help him understand, will not have an honest, no-holds-barred conversation. That was my original point, honest conversation is the best medicine. As you say Zywie, this is what psychologists get paid $300 an hour to do. Find yourself a good friend, online or in person, and talk. I think the online friends are better because you never have to hold back, you can tell family secrets and yours, and you know that no one will be gossiping about your latest revelation. If you talk to family, you can be pretty sure that at some point that conversation will become public, to some extent, no matter how much they love you, probably because they love you. Have you ever said to a family member, "Now this is top secret, for your ears and nobody else," and proceed to talk about another family member? When we are puzzled by something, we tend to disclose the secret in order to get another opinion. That's just natural but online this cannot happen, so go for it... open the floodgates. Whine or bitch and moan or tell us how you overcame your mental pain, not only your physical pain. The mental is worse than the physical, you can get a pill for the physical... you get a friend for the mental. XX We are here to help each other get through our worst days... keep it up. HUGS to all. XXX

Hi Paula, have you tried different bags, stickies? The Convex bags are really great; they last a week for me sometimes! Micropore Surgical Tape, only the one made by 3M (very important), does a great job in sealing the edges of the flange. Four or more strips of 2 1/2 inch tape (or even double up the tape) around all sides. I can swim, shower, and go to restaurants, etc., without any worries. Of course, I always worry anyway, but a hell of a lot less. I hope the Convex Bags/Flanges will help you. Hang in there, Paula. As Zywie says, don't hold back online, get it all out, and this is the place to do it... Let it rip, Paula. Love and hugs, XXX

It's like I just read about myself. I'm totally new to this, but I've had the bag since 2011. And I really don't have a life. It's just me and my cat and this flipping bag.

Hey everybody, I have to admit that I seriously lost it in my previous reply. I am losing it gradually. Thanks to everyone who tried to help anyway. As you said, conversation is a treatment. Please let me explain how I feel now. Since you discussed the dreadful word "sex" and its contribution to ostomates, I had to share some moments here. Feel free to compliment, support, or condemn my reply. I seriously don't care. A while ago (6-7 years ago), I almost had no friends but 2 family members. Now, I am the most sociable person you can spend time with. Put me in a group of people and I will always get along somehow. Obviously, I'm not mentioning this to say that I am a superman in friendship nowadays, but my point will follow afterward! Back in those days, my dream was to have a group of friends that do things together and enjoy what we do. I learned a lot in socializing with too many different people. I became so mature that I found out I hang out with people who are 10-15 years older than me without them feeling I am any younger than them... lol. After my surgery, I still socialized with all sorts of people. I have to be honest and say I have cut down on staying indoors for a long time as this could cause my bag to be stupid sometimes between friends who are clueless about my bag. Comparing the lonely version of me to the superman is almost the same as how I feel! I still feel empty as I was alone, even when I am among all those friend groups that I immerse myself in. I tend not to stay alone at home and start to worry or think negatively about many things. I only stay at home if I am sleeping, sick, tired, and sometimes eating. Feeling empty is something tough when your chest gets tight and you feel there is an emotional gap that has to be fulfilled somehow. I kept looking and looking for someone understanding who I can be in a relationship with, before and after the surgery. All led to disappointment. Seriously, I got disgraced 3 times instead of once. I never met that understanding girl who could even continue the conversation or not act weird after knowing about the bag. I was a good friend to a girl, only for her to know that I am no different than others. When I confronted her about how I feel towards her and what my health situation is, I was told that I am a very good friend, hope things stay as they are, you'll be better, and all that fake emotions. So, whether I told them early or late, it was always the same dead end. Telling them early ends up with misery (going for a different guy the day after the conversation) and telling them late ends up with me being a dishonest guy! We are all born with sexual needs and yes, younger people are more likely to have that need triggered more often. I have read and heard a lot about how this sexual frustration could lead to serious problems in the future. I started to not feel right when looking at girls, women who I know or don't know. I am always against paying for it (especially if it was your first time!), so don't mention that as a supportive reply. I almost have no love or emotions for anyone now; I am now ruthless towards my drinking, smoking habits, and even driving. Like a lot of ostomates on here, Crohn's and colitis, we all deal with fear on a daily basis. I do really get lost in those fears sometimes. My physical pain has not been severe for a while now, but mentally,

Hi Darius, I feel your pain, my friend, and I do not say that lightly! I had mine when I was just coming out of my shell and loving to love all those lovely ladies! Suddenly, I woke up not knowing what this thing on my belly was. I'd never heard of it and never had symptoms of colitis, never heard of the condition. It all happened in the space of two or three months - the cramps, the bleeding. This was misdiagnosed as hemorrhoids and got to the point where I collapsed from blood loss. I was about 24 years old. My old life was over until I got the J-Pouch a few years later. I had some relationships which saved me. When my J-Pouch failed, I was back with the bag in 2000. I spent the Millennium in the hospital and actually died twice. No, I saw no tunnel, no bright lights, no family waiting for me. I only resolved my problem with the bag when I began to expect nothing from women except friendship. You will find caring ladies who are not bothered by it, but honestly, I wouldn't count on it. I must be truthful. I have met beautiful women on this site who want to meet me and possibly have a relationship with. Women from all over the world and from nearby. I live in Ireland but visit the US all the time (family) and hope to meet someone in person at some point. The point is... since I accepted that this thing is now part of my life, I don't care whether women reject me because I begin by not having any expectations, even from someone I meet on the site. I've had better conversations and have met nicer people (women) on this site than I ever met in my other life. We know each other here, we can all relate to your feelings, Darius. Keep writing and they will respond. Don't be afraid to open up with your honest feelings with women you write to. All people value honesty, even if you are feeling sad and alone. WARNING!!! Don't get stuck in self-medicating with booze or weed. Been there, done that, and have the regrets to prove it. Take it from me, my friend, it does not help. It is a temporary relief for something you need to accept. You will lose your friends and family, and you will have many apologies to make in the end to prove that the real Darius is back. If you still have your rectum and sphincter, you could be a candidate for the new and (hopefully) improved J-Pouch or BCIR (Google it at the Mayo Clinic for the best info). Keep writing, my friend, and persevere. Don't give up... ever. Good luck with the BCIR. Mayoman

Hey Darious, been sitting here trying to think what previous reply you lost it in. I can't find any. Just to let you know, it's not just the women your age that are fickle. Seems it's all ages and both genders. I have decided to work on making the remainder of my mate-free life exceptional and if some man happens to wander into it all the better. If not, oh well. But I'm being real picky about who I let in, so that may never happen. Heehee Problem is, I've had a pretty fantastic life up until all this started; as far as livin la vida loca. And the man of my dreams was in my life for over 30 years. I don't know how I would have been if this happened in my 20's. So there is no way I'm going to sit here and try to tell you life is peachy. You are in your prime and you should be doing all the things I did back then. Not that I know you that well, but from the pics and talking to you a bit you pretty much are. Only thing missing, which is a biggie at your age, is a partner. However, I can say from experience, your prime can last way into your 50's! So it's not over yet. Until then, just keep being your exotic, princely self and don't be afraid to flirt with ostomates or non-ostomates that tickle your fancy. Mayoman is not exaggerating, there are quite a few ladies that would love to have him by their side on a permanent basis. I can't imagine him ever being shy- though he sticks to that story faithfully. :) But also I agree that, even if a woman makes it seem like something may happen, I wouldn't put all my hopes and dreams into it until, how does Beyonce say it, there's a ring on it?- metaphorically speaking. I can't say I know how it is because I don't have a clue. I have never had a problem attracting men, especially when I was your age. The problem now is getting them to really want to stay. Believe it or not, even at this age, the majority are really only looking for a one-night stand or consider a friend with benefits a long-term relationship. I'm not that horny. :) Your looks and your personality wouldn't make for too many lonely nights for you either, if that was all you wanted. (And I'm sure you have a yummy accent.) From what I have read, you want something real, not superficial. Even if you were healthy, that is not easy to find in your age group. I'm going to steal Mayoman's sentiments and say the same - persevere, don't give up, ever. Hugs, Z.

Thanks for your understanding, guys. I appreciate those long replies. I wouldn't type that much for you :D lol :D Only joking, Mayoman. I should do the reversal next year, two more operations. I'm worried. If that didn't work, I would go through more surgeries. I've heard of incontinence even after the surgery in some cases. However, I am not just dealing with that but also with ankylosing spondylitis. I know it's only a matter of time until the bio treatments stop working. That condition almost put me in a disability before. I am rushing to find a girl now because I don't know when this joint problem could hit back again and take away what's left of those dreams. I actually haven't met anyone from the website yet, and my messages have been completely ignored. I would believe you on how ladies chase you around here, and because Zewi had also backed you up :D Zewi, thanks again. As you said, I am not a fan of one-night stands, but I've reached a point where I would actually do anything to get the frustration out of my head. This is not me, but to save what's left of me!!...(at least being honest) Thanks for your advice not to give up. I have made multiple comebacks in my life until I became more successful than healthy people themselves :D. That's what I'm only hanging on. I wanted someone to understand what I have come across and what I have sacrificed since I was little to become what I am now and not to sleep aside for one night. Someone to know I'm not angry but really tired sometimes. Someone on this website not to preassume that I am not just sending them emails because I'm only interested in their backs...peace...

Hi again, Darius. My sister and my brother have spondylitis, and my brother also has UC! My sister uses Remicade and got amazing results from it. It relieved her pain, and with exercises, she is doing fantastic. She gives herself the shots and said that she has never felt better. It is too late for my brother; his neck vertebrae have fused together, and he has to turn his body to look over his shoulder. Remicade came too late for him. I totally understand your desperation, Darius. I have found that the more desperate I feel, the worse I am with women. I'm older, but I still have lots of mojo left, haha, and I am open to the ladies, but I don't expect it to happen! I just try to be my new charming self, haha, and relax. If I meet that lady, then it happens; if not, then that's the way it is. I decided a long time ago that I can't make a woman overlook my bag and sleep with me (not unless I pay, which is not for me; I need love, not just sex. I can do that myself if I have to, LOL!). If I find that special woman, then so be it. As I said before, Darius, write to a woman on this site who appeals to you as a person and just be honest in your messages and allow yourself to be vulnerable, expose your true thoughts and feelings without the bullshit, just you! Everyone responds to that kind of honesty, Darius. You will find a lady on this site to connect with; I guarantee it. Don't let age discourage you. A much older lady I wrote to because I liked her name gave me some great and wise advice, similar to what I just said: be yourself and let people in, and they will come to keep you company, at least, on your long, tough journey ahead. All the best, Darius. Keep writing. Keep trying. Mayoman