Struggling to Open Up - Need Advice

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VIPete

Is it weird that I'm here on this forum but still have not come around to being able to talk openly with strangers --- even those who do not know my identity --- about the experience that led me to qualify for membership at MeetAnOstoMate?

Am I the only one here who is still somewhat afraid to really go into detail about it with anyone other than close friends and certain family members? Can anyone else here relate to where I'm at with this?

I know I need to get over it and learn to be proud of who I am regardless of the circumstance I now find myself in, but for the first time in my life I'm experiencing a crisis of confidence and am unsure of how to handle it. At one point I was every girl's dream guy, had a great job, beachfront home and a wonderful life. Now that so much has changed in my life, I suppose I'm beginning to question who I am, and am unsure of the answer.

I was great at sports, extremely athletic, handsome (I'm still handsome, but I feel as though I am not), and I've never once in my life prior to the period leading up to my diagnosis questioned my self-worth. Now, it seems to be the $144,000 question I've exhausted all of my lifelines over and still haven't a clue what the answer is (I know the reference is a bit outdated, but you get the point).

I feel guilty that my girlfriend has stood by me through all of this. I love her more than myself or anything else in the world, but feel as though she deserves better than the me post-diagnosis... You know, the one whose very existence is an inconvenience to her.

Granted, she's given me no indication that she intends to leave anytime soon but I can't help but think that the day when that will change is forthcoming.

Sorry for being so depressing. I'm new to all of this and am unsure of what to do or how to handle everything that goes along with it.

Maybe in my next blog I'll reveal a little about my situation, but as of today I haven't yet built up the courage to do so. Any suggestions or ideas on how to come to terms with the new me would be greatly appreciated, although I can understand given that I've really not said anything specific how it may be difficult for anyone to empathize with me, much less offer advice.

I will say though that just writing this first journal seems to have made me feel a bit better.

What did you do in order to come to terms and learn to talk openly when appropriate about your situation? How did you regain your self-confidence, or were you even able to do so?

Any advice right now would make a world of difference as I'm just not sure what to do or where to turn. I'm not suicidal, but I am a bit depressed and worried that life will never be anything even close to what it used to be.

Past Member

Hi, don't be too hard on yourself right now. Like you say, all this is new to you. The things you're feeling and going through are a recovery period. Not being able to be open about it with your closest friends is okay. We all, at one point in our lives, doubt partners or spouses, wondering if they're going to stay or not. It's okay to feel these things. Being down and depressed is one of the things we have all gone through and still do from time to time. I know it's hard to accept your problems or illnesses, but things will get better. But firstly, you have to start to love yourself as you are. When you can do that, your life starts to turn around. I fully understand what you're going through, and many more on here will too. I was the same as you, couldn't talk with anyone or tell anyone. I had to make myself come to terms with what I have, but it didn't happen overnight. But I can tell you one thing, I've learned to accept my life as it is. It hasn't stopped me from living a good life and loving someone and getting married. I found this site a couple of years ago, and I've made friends. The best thing I've found, with my knowledge of my problems, is that I can help others by coming in here and reading what others have to say, and if they need advice. All that you said you were can still be, and even better. It just takes determination from you. It's made me a stronger and better person. I won't let anything beat me. I love to win. I hope this has helped in some way. I and many more on here look forward to seeing you write again. Think positive about yourself. Take care, Ambies.

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MeiMeerkat

Hi there, I'm so sorry you're feeling so down. Things will get better. What they forget to tell you is actually how long it takes to get used to it. I've given mine a name, it's much easier to deal with. Especially when I have accidents. Talk to people about it openly, we all have this thing in Britain of keeping things to ourselves and it does not help. Your girlfriend sounds amazing, and she still sees you as her man, as of course you are, just with extras. Please don't think that you're not. Think of how you would have been without the colostomy, in pain? Ill? Dying? You're still here, for a reason, and the colostomy is only an aid to getting back to normality. Being fit and athletic is such a bonus. I'm a paraplegic, and due to other problems, have zero metabolism and in pain 24/7 so can't exercise, so the weight has just ballooned, and now I have a hernia, and basic exercises can prevent this, and as a sportsman you'll know the good benefits of exercises not just for the body but for the mind with the endorphins etc. When you do have an accident, make a mental note of what you've eaten. If you have the same result three times in a row, then you know to avoid that item. For me, it's batter, peas, sweetcorn, mushrooms, eggs, processed garlic (not the fresh one, thank goodness lol), nuts, dried fruit, wine gums etc. I now try to avoid them, but sometimes you need certain foods lol and so if I know I'm home alone and have my change kit by my side, I treat myself to eggs etc. You'll find a balance to suit you. Enjoy life, it's not a practice run, there's always someone worse off than you, especially in the cemetery!! Smile, chat, and carry on. Give your girlfriend a big hug, talk to her (or if you can't, then write down what and how you feel). It's good for you to pass things on and good for your family and friends and partner to truly understand what you're going through. A colostomy can affect our confidence more than anything, but it does get better. Take care, and good luck. Please contact me at any time if you need to talk. Cofion/regards, Meira.

DH

Hello, don't be ashamed. Almost all of us are on here because our plumbing has been rearranged and fashioned with a new exit so that our stool could pass into a bag. You would be surprised at how a lot of people admire us for dealing with this. It's not always easy dealing with it. We worry about leaks or having to change or empty our pouches in a public place. We have to wear our pants a little looser and worry about our pouch bulging under our clothes. But when I compare this to what I went through before surgery, I am so grateful to have a colostomy. And I am not ashamed to tell people about it. I find that some people actually admire us for being able to deal with this. In a way, we are unique. Just remember we are all here to ask and answer questions. Don't be shy. People even ask sex-related questions on here. I know this site has made me cope so much easier with the colostomy. I hope you keep us updated on your situation. Don't be afraid to vent out your frustrations or chug out any questions you may have. That's what we are all here for. Good luck. Donna

bikerboy

Look, we all went through the same ordeal, more or less, some more and much worse. But you're walking and talking and not pushing up daisies. If you were all you say you were, you'd be out there having fun like the rest of us. With the exception of laying face down on a flat surface, you can still do pretty much everything you did before and more. I personally went through the "woe is me," "who's gonna take care of me," "how will I cope with society" phase. The second day I got home from my 40 days of hell, I was having fun showing off my bag and getting my suntan back, and sitting at the beach here in SoCal. People would come up to me and ask what the bag was for. Some shied away and some wanted to hear my story and started talking about the gastro problems they had. Now, 4 years later, I'm the life of the party, traveling all over the world, welding on ships around the world, and having fun with my bag. And sex, too much. So you can sit at home and wither away or get back to living.

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
foxbody

We all have a story to tell, and we all tell bits and pieces of it through time. I suffered badly with UC, and as a result, over time, ended up with cancer in my colon. I had a scope done on Oct 13, 2011, and on Oct 20, 2011, I got a phone call from my doctor saying he wanted to see me. He informed me my colon had to be removed, and his nurse would call me with a date for surgery. So, I waited 3 months, and the call came for me to have my surgery on Jan 26, 2012. I did not know anything about what was going to happen. I did not ask any questions because I did not know what to ask. I could have gone on the internet and googled it, but I chose not to. I know there was positive info there, but also negative. I went to sleep; I had a colon. I woke up; I had an ileostomy. They showed me a little bit of how to care for it, and I had a week of home care. Most everything else came from trial and error and, most importantly, this site. The people here are wonderful and have lots of information. My confidence started to return when I returned to work. It took me a while to start talking to my wife openly about my stoma. I do not know why it was so hard for me to talk to her about it, as she had watched me suffer for years and had watched me always have to know where the bathroom was and was with me every month when I had to buy another 4-pack of boxers because I had to chuck a couple pairs in the bush because I could not get the vehicle stopped fast enough. My surgery and my stoma gave me back my life. So, I am not quite ready to tell everybody around me about my stoma. They already know because I am not spending all my time in the bathroom. Take care and good luck, Ed.

sony34

We all understand. I received my ileostomy in 2008 with the understanding that it would be reversed and was just told this year that it is not possible, so I am still trying to get used to what I call the new normal. I am not at all comfortable discussing this with people. I don't really date, and I still question who this new me is, but I thank God every day for allowing me to still be here because it was really touch and go for me for a while. I try to wake up every day with a good, positive outlook even when I don't want to... :-) and pray for the day when I feel completely comfortable in my own skin again like I used to.

Bill
Hello VIPete,Thank you so much for posting this brilliantly composed blog on your feelings during this difficult early phase.I will not say much except to support what our fellow ostomates have said.I will try do my own thing and plagiarise your sentiments, translating them into rhyming verse hopefully by tomorrow I will blog the result.( I need to sleep on it!) I hope you like itBest wishesBill
ebm629

Hello VIPete and everyone. This is my first time on this site and I can definitely identify with you. I have a colostomy for 6 months now and am really having a hard time dealing with it emotionally. I don't feel socially acceptable anymore and find myself withdrawing from others. I too find it hard to talk about with other people; I'm afraid everyone will find me repulsive. And the noises coming from the bag at times are so embarrassing! I truly thought I would be more accepting of my plight by this time, but it's just not happening. I'm hoping to learn about acceptance and coping from the wonderful people on this website. Thanks for the opportunity to vent. Eileen

Bill
Hello again.I was so impressed with the replies on this blog I thought it deserved a verse of it's own ( see 'replies') Thanks again to VIpete for starting it off and to all those who have responded. Best wishes Bill
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