Hello all... I'm Constance... I just had surgery 3 months ago and am still getting used to having a pouch... I'm 34, divorced, and have 2 wonderful children. This has been really devastating for me, and I'm still in the anger and depression mode. I'm looking to meet new friends on here who have gone through this, and to be frank, I'm looking for support... My illness began 5 years ago with a surgery gone bad. Last year, I had my colon removed and 6 inches placed back in, only to go through hell with not being able to control my bile. In one year, I had 8 surgeries for stomach blockages and at least 20 NG tubes. 3 months ago, I was almost dead with another blockage that I let get out of control because I wanted to dictate when I had to have the bag. Ignorance almost cost me my life... We live in a society where appearance is everything. I'm looking to hear your stories, experiences, ups and downs. I'm not a member as of yet, so I cannot chat with you. Please feel free to respond to my blog... Every day is a challenge. The pic I posted was one of a few that was taken 4 months ago before my surgery. I was happy-go-lucky then, confident; now I'm insecure and unsure of who I am... I write this with hopes of learning more on how everyone has dealt with this situation and perhaps gain a better perspective on living with an ostomy.
Constance, if you need to talk to anyone about the time you're going through, I will help you. You need a shoulder to cry on, I'm there. Any time you feel like talking, okay?
Rich
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About seven years ago, just about every aspect of my life was ostomy related. From the moment I was told an ostomy might be needed until some months down the road I existed as a person afflicted with a colostomy. I feared someone other than my immediate family might find out I had a bag. Ugh! What could be worse? Suppose it filled real fast when I was out with no place to hide and take care of myself. God forbid should it leak in church! Suppose I roll over on it in bed. I was a lesser creature, destined to a life of emotional anguish and physical routines different from most of the rest of the world. I felt like a freak. Then I found folks like you guys here, read your stuff, really “listened” to what you had to say and I began looking at things differently. We know perception is everything and I began to understand how good things were relative to what they could’ve been. So many folks had it so much worse than I did. That didn’t make my discomfort go away but it exposed how fortunate I was to be dealing with my stuff and not their’s. I felt a little guilt, maybe selfishness but quickly forgave myself by understanding I just wasn’t smart enough to fix my feelings. Then, I wonder what smarts have to do with feelings. My perception was warped so my perspective toward my existence was warped.
I learned over the last few years with the help of lots of folks right here at MAO that I could be better at living just by accepting some facts. It is what it is and so what? It’s not the worst thing to happen to a person.
I think everything is, in some way, related to everything else. I just put the ostomy thing in the back seat and drive forward.
Respectfully,
Mike
Hi Constance. Well, let me tell you first, I am about almost a year and a half ahead of you, and what you are going through is exactly what I went through, or am still going through. I don't want to say it's natural, but I have the same feelings. The one thing I think I am having the hardest time with is that not one of my friends understands completely what I go through. I really do think that if you had someone to release to and have them understand you, it would be a little easier. I don't, but if you would like to try and maybe start chatting back and forth, I'm game. Hell, it can't hurt, right? I'm so sick of all my feelings just stacking up because I can't fully believe that when I try to talk to my friend, they can't truly understand. I will give you any advice that I have gained in the past year and a half. Maybe you could even help me. What do you think? Again, it can only help, right...
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What really sucks about this bag is that I am not the person that I used to be. It's like I woke up from surgery a different woman altogether. Before, I knew who I was, what I wanted, and expected in my life, and now I'm not sure of anything. Yes, I'm angry, yes, I'm in self-pity. I can't accept this whole thing yet. My confidence in myself took a nose dive. Before, I thought I had plenty of time to find a boyfriend, so I was picky and took my time. I just would not settle. I can't imagine dating a man now, telling them about this hideous thing attached to my body. All these feelings are so foreign to me. I want me back. I want my life back. I want control of me again. Do any of you feel this way? If you do, how the heck do you cope?
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The best advice I can give you right now is to give yourself some time to grieve over the old you (body, that is). When you are able and willing to accept your "new" you, then and only then will you be able to move on. You are still the same person that has loved and been loved. In time, you will realize how much love you have for yourself and are capable of having that love returned.
Greetings, Montana.
I have an ileostomy pouch, and it gave me my life back. I'm truly happy to have it, no more running to the toilet, no more pain. Hey, I just found a great pouch cover for use during intimate moments; it's great. I also have recently purchased some sexy new underwear. Be happy with your body; body image is not everything. I'm 60 years old, I've had Crohn's disease since 1972 (37 years), and I'm finally free from the diarrhea, gas pains, vomiting, and blockages. Be happy, some people are very accepting. Have you seen the great sites on YouTube? There are several which show guys changing their pouch. Hey, if they aren't ashamed, I'm not either. (smile) Work for acceptance and happiness... I'm gone. Katrina
Wow Hazzard, you sound so full of life... Would love to chat more with you. I will check out YouTube. I'm not a member; I'm still just checking out the site, but well, thanks... It was uplifting.
Hi Constance,
I've had my ostomy for 5 years now due to cancer. I am still not used to it, but I cry a lot less about it now. One time I cried and screamed so loud I broke blood vessels around my eyes.
I do have to say that any guy that I chose to tell about my ostomy has been very understanding and has accepted it. But you do have to choose who to tell and the right time to tell them. You will know who and when.
Just ask yourself, if you fell for a guy and he told you he had an ostomy, would you care? I wouldn't have if I didn't have one. You love who you love no matter what.
I don't know when I will ever feel like I used to. Maybe never, but I'm here, grateful for the moment and my time with my wonderful daughter.
Want any tricks of the trade? Let me know and I will answer. I found some great things at Victoria's Secret, and my mom makes these great covers. I did a belly dance for one of my boyfriends when I first put one on. Maybe I'll add those to my pictures...
Later, Sexy!
Hello Constance, this is lazymule checking in to say hi. I am 55, I know you specified meeting someone 29 to 50, but I can still be a friend even if I am an "old man"! I know every single thought that has gone through your mind since you have been sick. I started having rectal bleeding when I was 18 years old. I had several exploratory surgeries (they did not have endoscopy back then) and I got a colostomy in Feb. of 1976. The Dr. said I would only have it for about six months. I guess I did OK other than hating myself and being so humiliated and ashamed of myself. I got married in 1977, had a son in '79, and life went pretty good with only occasional flare-ups and a few short hospital visits through the years. I worked jobs, played music (have been a musician all my life) and then in 1998 I started getting very sick again. I struggled and swallowed about 25 pills a day until January of 2001. They had to take my colon and rectum out. What a nightmare! They did more damage than good to me. Damaged my pudendal nerves, ruined my urinary tract putting stents in my kidneys for the surgery. 5 days after the surgery, I got sepsis, went into septic shock, and flatlined in the ICU. They were able to get me back alive, but I have been in agony with so much pain. I could not sit down until about a year ago. Also, I had Peyronie's Disease, was impotent (no sex life) and still have a very tough time when I have to pee. Well, my wife of 31 years left me a year ago. We were best friends and soul mates, according to her, I guess not. So, here I sit, alone and feeling like I wish I could just go to sleep and never wake up again. But just like what you are going through right now, I am slowly getting better and learning that being alive is always a wonderful gift, no matter how much misery and horror this disease can put you through. One thing I have always relied on is looking at people that are blind, crippled, paralyzed, and all of the terrible ways people have to live. It helps me to make it through the days of depression and anger for having to live my life with all that I have been through. I am glad to be alive and sitting here, sending you a letter. I know how you feel, but you must accept that your life is going to be forever changed, but you will still live and get better and better and find that being alive is such a wonderful gift. I promise you that everything that looks so bleak right now, will all be so much better soon. So, get tough and know that things are going to be better soon, and life is always worth living. Better days are ahead, you will see! I wish you a speedy recovery and many happy days ahead, be strong! Lazymule!
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