Struggling to Accept My Colostomy as Part of Me

Even though I've had this colostomy for a year, I can't seem to accept the fact that it's here for life. People say to me, "Why are you always looking so sad?" I think to myself, if they only knew. I guess I found this site for a reason. Finally, someone I can talk to about this monster hanging from my stomach. Somebody, please help me.

One person's monster is someone else's life raft.

Hello Ragdoll, Thank you for sharing your feelings. That in itself is sometimes difficult to do, especially when it's about personal things that people do not often talk about. Your plea for someone to help you draws a lot of empathy from me as I am well aware of the feelings you describe. Unfortunately, for the most part, the 'help' you need is probably that which has the label 'self-help'. Many people on this site will know exactly what you are going through as they are probably struggling with their own (maybe similar) feelings. However, the struggle to overcome and manage those feelings is a very personal affair and needs to be worked upon by the individual themselves. For my part, I have written many verses to try to encapsulate these types of feelings and concepts and thereby place them in a framework outside of my own daily thinking processes. This helps me 'cope' and manage feelings that might otherwise fester away inside. Writing verses channels negative energy into something relatively positive for me. It is a 'distraction' from the things that can generate negativity. Many years ago I wrote a verse trying to explain that 'It took years to learn how to smile'. This was actually written at a time when people were asking me why I looked so sad all the time. It is my belief that people can find suitable 'distractions' if they look and work hard enough. I also find the 'just for laughs' section will sometimes lift my spirits, although I only did into it occasionally.I do hope you will be able to work through your present feelings to a place where you can feel more comfortable with your lot in life and begin to smile at will. Best wishes Bill

Thank you, Bill... finally, someone to talk to and not feel alone when it comes to the monster... thank you for telling me how you deal/dealt with your situation... maybe there is a smile at the end of the tunnel.... :)

Hi Ragdoll, I know how you feel. I was the same; I hated the damn thing too. I have had mine for about 5 years, and I am still learning, but it does get better. You have to think of it as part of your own body. Not easy, I know, but folks on here are great, and when you hear what some have been through, it makes you humble. Anyhow, hang in there; remember, it kept you alive.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hello Ragdoll, I know exactly how you feel. I had my colostomy for a year and a half. I sometimes dream of waking up without this appendage sticking out of me. And I miss taking a shower without worrying about pooping in the shower. So I wear my pouch in the shower. I miss wearing my favorite jeans. And I hate that bulge under my clothes when my pouch fills up. I get anxiety taking long trips because I worry about getting a leak and not having a nearby restroom to go to. I miss sitting on the toilet and squeezing out a nice juicy poo. I hate having to wipe poo off my belly every time I change my pouch, especially when I am tired. And I could continue to list different things that I hate about having this. But I keep reminding myself of how blessed I am to have had this surgery. It has helped save my life. And I no longer have to suffer. I try to look at it as a war wound or battle scar and feel proud of the strength I had while fighting the cancer. I have come to accept this colostomy. But sometimes I think, oh darn. Like right now, my bag is rapidly filling up. Oh crap! Must have been the salsa chicken I just had for dinner. Gotta run and change! Best wishes, Donna

I do understand how you feel Ragdoll. I'm sure most of us could give you many reasons why we hate having an ostomy, but I'm going to say something different. I'm alive! I no longer hang out in the bathroom! I can go where I want and do what I want without worrying anymore. I travel, hike, bike, canoe, etc....all with a bag on my side. Do I like having it? No, but in so many ways, I am grateful for it......peace....Gail

I know that I'm very lucky to still be here... When I found out I had cancer, it was in stage four... I took my daughter for a checkup and decided to get one for myself... The nightmare started right that very second... Radiation burnt everything inside of me... That's how the bag came along... I don't want you or others to think I'm not grateful for having the surgery... It did save my life, but it's so darn hard to look down and see this thing hanging from me... The shower... The gas... The clothes... It filling up when it wants to... Augh... Thanks to everyone for the words of encouragement.

PB, as always, you are on the mark!

Ragdoll, You don't have to explain to anyone about being thankful or grateful for your ostomy. I get what you are saying, for sure! I'm sure 99% of us here get it! It is awful having a bag hanging off of us. All those things you fear, I fear them as well. I also had cancer and the radiation damaged me so badly that every thing was burned. It was horrible. I never thought that having a colostomy would happen to me. I didn't have colon cancer, never had chrons or any of the intestinal issues some have whose lives are greatly improved by getting a colostomy. I never had any problems like that. So, for me ending up with one was traumatic. Am I thankful, grateful, blessed? I sure am! I know this is just part of the trade off to still be alive! Do I wish I didn't have it? Sure do!! But, the hard truth is, it's here to stay and I have had to get used to this new normal in my life. I'm still adjusting and it's been 6 years. Every day is a new day to try and appreciate my friend. I hope that soon, things will start to get easier for you. I'm here if you need a friend!

I empathize with your situation, Ragdoll. I've had mine for 10 months, so not far behind you. I call mine the animal, because that's what it is. Someone said to try and view it as part of your body; I've never been able to do that, so I'm right with you at the moment. It's a huge mindf-ck, and I struggle every day. I'm not going to moan too much, though, as people on here seem to tell me a lot, there are a lot more folk worse off than us. I wish you resilience and strength.

I am going through this now. I got mine in October and was told in 6-8 months that it could be reversed. Now the doctor is telling me that I don't have enough colon left to reverse it :( and that is something I was looking forward to. I have not been able to gain any weight back or energy back. Is this an issue with you also? I am so new at this, and hating it, but as everyone says, it has kept me alive.

Thank you, Help me Rhonda... Every word that you spoke reminded me of myself... Everyone keeps telling me the same thing, but I still hate it, and I probably will for the rest of my life... Get used to the normal... I pray that that will happen someday... Finding this site gives me a chance to talk and vent to people that feel the same way I do... It sounds like dnl74 is having the same problems that we have had or are having in our life... Please reach out to them also... It seems like we all need to have friends that can help and teach us how to deal with the monsters... Please keep in touch. It's good to know that I have a friend from ? and you have one in Kentucky.

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Ragdoll, I live in Louisville, KY! We aren't very far from each other at all! Maybe we could talk or get together sometime. It would be awesome to have a friend who would totally understand when a disgusting sound escapes from my gut. lol You should give yours a name. I have. I call him MO. When I was in the hospital and the wound care nurse came in to talk to me about having an ostomy, she said, "Look at it... you are going to have to become friends with this because it will be with you forever." Then she told me that I should give it a name. My husband had just left me on my third day in ICU... said his life was going in a different direction and he didn't see me in it... so after 21 years of marriage, he left me for another woman. So... knowing this information, the nurse says, "Rhonda, since men are assholes and this is your new asshole... give it a man's name." Quote and unquote! Excuse the language. I don't talk like that but wanted to say exactly what she said to me. It cracks me up now. When I am having a bad day with it or when I'm out with my family and having some issues, I just always say that Mo is being a real butthole!

I am on here for my husband also (DNL74). He is having a hard time coping and worries about me coping. He seems to think that I will walk away and get frustrated with this issue of his. I promised him when we got married I would always be there for him, and I will. He is just not getting where he will go outside, maybe to a movie (but we sit way in the back, you know, just in case). Right now, my only concern is that he has to empty like every 2-3 hours and wakes up in the middle of the night several times to empty. It's always full of liquid, and it gets heavy, he says. Also, his stoma burns a lot. These are things we are just adjusting to. He has only had it for about 2 months now. It was supposed to have been reversed in June, but now the doctor says the rest of his colon is not in good enough shape to have it reversed. I am glad I found this site, love reading the posts, and it does help both of us.

Rhonda...It's great that you are so close and would love to talk with you or meet for lunch one day...when I'm around my friends (I really don't have many) they will ignore the sounds that come from the monster, but when I'm out in public, I get so scared that something will come out...that disgusting sound that you mentioned...I don't eat if I know I have to leave the house...I will go all day without eating to avoid having to dump or listen to the noises...sounds like your husband was a loser and nothing good comes from being a selfish loser...in the long run, he will get what he deserves...I was married, and the day I came home from the hospital...my husband packed his stuff and left...I blamed myself...I thought it was all my fault...who would want someone with a shit bag hanging out of them...who would want to take care of a grown woman...I thought my life was over, and then...an angel walked into my life...he was telling me about his past and how he used to date a woman who had an ostomy...I hadn't mentioned anything about mine to him...I questioned him about that relationship and finally told him about mine...he was so angry at me...angry at me for not believing he would be by my side no matter what...it's been almost a year, and he's still here...I never thought anyone would love me with this monster hanging from me...I was wrong :) thanks again for listening...it feels good to talk to someone who knows what I'm going through.

dnl74...I found this site only a couple of days ago myself, and I'm so glad that I did. It's only been months since this big change has happened, and I know how your husband is feeling. There's going to be good days and bad ones. Just be there for him. I myself get up two or three times a night to empty. It's been a little over a year for me, and I'm still learning. Just be there for him. He's going to need that shoulder to lean on.

Thanks, Ragdoll. Everyone forgets what the spouse or mates have to go through also; it's a lifestyle change for them as well, but not as drastic as for the person with the ostomy. I am very supportive of him and encourage him. He has ups and downs. Unfortunately, we are now going to be looking into getting twin beds because he is up and down so much and he keeps me awake. I still work, but I ride it out with him.

I have had a permanent colostomy since 2004. I taught high school, travel a lot, and am in a committed relationship. I haven't really found anything that I cannot do now that I have an ostomy. My ostomy saved my life. I also was diagnosed with cancer in 2003. I rarely think about my ostomy and am thankful for a second chance at living a great life. Ostomies take some getting used to, but they don't have to take over your life if you decide not to let them. Once you are over the initial shock, and find a pouching system that works for you, life can be good again.

dnl74, is your husband having to empty because it is liquid output all night? My stoma feels like it is burning sometimes, too. A lot of the time it is the skin around the stoma that is burning because of the liquid output. I take a lot of immodium to thicken things up. There is also something you can buy to put in the pouch that solidifies the liquid. They also make larger pouches... It just doesn't seem normal that he should be having to get up all night to empty. Adjusting our diets is a big thing also to cut down on the diarrhea. I know it is difficult. I've have difficulties with mine from the beginning. I just can't find the right pouches but I am meeting with an ostomy nurse next month to try and rethink my situation!

Ragdoll, I am not a paid member on this site so I can't message you my contact info.... if you are a paying member, shoot me a message and we will try to get together some day.

I'm not a paid member either. I just happened to type "ostomy" and found this site a couple of days ago... so I don't know what to do next.

Hello Ragdoll, I am a fairly new member too, and don't really know what to say. I would be so glad if somebody would ask me something. I find it difficult to have a conversation on my own. Perhaps you would like to do that. I'd appreciate that. Love Elisabeth

Milky, I too am new to this site; you will find either myself or my wife. We both are loaded with questions. Like, how long? What happened? What supplies do you use? How is your spouse or mate handling it? I have been very encouraged by the answers I have received, so go ahead and ask away. These are some wonderful people full of advice and encouragement.

Milky...I've only been here a week, and there are so many questions that I want to ask...People tell me that the monster (my bag) has saved my life, and I know...maybe one day I will really realize that and accept the monster...feel free to ask me anything, and I will answer to the best of my knowledge, and if you need a shoulder to lean on, I'm right here...Take care, Elisabeth, and I'm looking forward to hearing from you.

Ragdoll and Milky, you don't have to rush yourselves with anything. You will accept this in your own time. People who were so so so sick and then got their ostomies, surely feel better and lucky to have it. I'm not saying that we aren't lucky. We are blessed beyond measure that this operation is even an option. It is a trade off for life. I guess I compare it to this.... say a town got a ton of rain; it was great for the crops and everything... but it may have flooded another's home in the process. lol Everyone is still thankful for the rain! It's going to be ok, Ragdoll because it has to be ok. You may never love your Monster but you will accept it and appreciate it for what it does. I would say that positive thinking is the best thing any of us can do for ourselves. I would say maybe you should rename it. Ya know? Give it a name that isn't so horrible and maybe you will start thinking less and less of it being a monster. Lots of people give them names, that way you can speak of it out in the open without everyone knowing what is going on. Like when I am with my kids out to dinner and I have an issue, I will say... I need to check on MO, I'll be right back. If anyone else is there they wouldn't have a clue what I'm doing. lolHang in there sweetie! I promise you will get more used to what's happening and just learn to take it a day at a time. This site will be so helpful. Ask anything.... I mean you really can talk about ANYTHING. I have horror stories just like everyone else does. Don't be shy!!

Thanks, Help me Rhonda... Hopefully, one day I will accept it and not let it keep me down. I really don't leave my place because I'm so afraid something will happen again. I say again because it has made terrible noises when I'm out and people just stare. One day I went to see one of my doctors and when I was getting off the exam table, I stood up and the monster opened up and everything just poured onto the floor. I was so embarrassed. When it gets full of gas and I have no choice but to burp it, the smell, OMG, makes me sick to my stomach. So when I have to burp it at a store, I'll burp it and hurry to get out of the aisle. Sometimes I don't get out fast enough, so I try to act like I just smelled it too. People's reactions are priceless. I've been thinking that I should rename it also. Hopefully, tomorrow I'll come up with a better name.

Ragdoll, sounds like you just need to fine tune your pouching system. I still don't think I have the perfect pouch for me but I just keep trying. I know what works best and what I can get by with if I'm just home. There are special tapes that you can buy that you can use to tape around the outside to keep things from leaking. Some people have even suggested duct tape, if it doesn't bother your skin. Some duct tape is even in colors and designs now. lol When you are going out and you worry you might have a problem, just take that extra precaution and tape the edges. The tape that I like is called Hytape. It's waterproof, also. As for the gas... well that is an issue for most of us, I think. When I have a doctors appointment or date or whatever coming up, I will start paying close attention to what I eat two days prior to the event. Diet is going to play a big part now. There are going to be foods that cause gas that you may just have to avoid. Try taking Beano before you eat those foods that cause you trouble. I do understand not wanting to go out because of the fear. I have been there. I have had horror stories as well and I've cried in embarrassment over it. This is just a matter of sucking it up and moving on. I could have become a hermit and never go out again or just keep trying. I decided to keep trying. I was still afraid and I'm still afraid now. I'm not sure how to get past that... Some people don't have any problems with their pouches, with leaks and things. I do. The way my stoma situated on my body makes it hard for me to get a good seal. That's why I use the tape. Sometimes I use the Eakin Cohesive Seals also. You can ask an ostomy nurse to help you also, maybe you just need to try different things until you find what works best. Just hang in there. The fact that you are asking for help is a good thing. Hope you sleep well tonight and have a great week! -R

Ragdoll, well it looks like you have generated a lot of discussions. I just posted a blog about compassion on this forum and I hope you find time to read it. Now then, I came here to this site some years ago and I read many of the posts and read about many other people's problems, but by the time I got here, I had already gone through the gates of Hell and back again. My one post was to make people aware that there is life after, even if you have to drag along your buddy. You learn to accept and cope. (Not always easy) Then I went on to the many sites that are available to an Ostomites and would come back to visit the family that I first got to meet so many years ago. When I first came here, people did respond to each other, but I was reluctant to express moments of sorrow and despair in that I felt I was over that, even after fifteen years. I do have moments, but they are so seldom and my life is great. You are fortunate to find the 'Angel' that you speak about, and it sounds like a foundation to build on. I guess my point to this whole dialogue is to let you know that this is a home to come back to and the people that give information and understanding are cherished members of this community. You are not going to solve all the problems and get all the answers right away, but if you endure, you will find a very compassionate community where we all share a similar experience. So I say welcome to you and all that are new to this forum and enjoy one another. God bless and may each day be alive with joy and hope and cherish one another. From the Sourdough, an Alaskan term, not a mindset.

Hello Everybody, I have had my stoma now for 15 years, and no problems. When I was first told, I cried for months. I went to see my family in Bavaria and my aunt, who was well known for her natural remedies, said: "Oh, that is not so bad, just eat a grated carrot every day and you will have no problems with your stoma." (In Bavaria, they have a special carrot grater, I am sure an English grater will do just as well). I didn't believe it, but tried anyway. My mother went to buy a grater; I couldn't—I would have just cried. But ever since, I grate a medium carrot (organic, they're sweeter). Try it! Your skin will be lovely, your stoma will never be sore, and carrots are also very good for your eyes. I promise you that you will not see in the dark, but you will keep your eyesight longer. I still have my first glasses. When I was admitted to the hospital, a junior Dr. said to me (I was crying, of course), "Perhaps it would be a good idea to reduce your meat intake a little. Meat has a habit of hanging around in the gut." To which I answered, "Dr., I am not going to reduce my meat intake, I will stop eating meat altogether." I have been a vegetarian ever since. I have a good breakfast, 2 rolls, perhaps an egg or some cheese, a very good lunch, and always a grated carrot before. I don't always have a sweet, but in the afternoon I always have a coffee and a small piece of cake or something. And always a glass of water in between. I also drink herbal tea, especially before going to bed, and always have a glass of water on my bedside table. In the evening, I have a little soup; after I have had a good lunch, I don't want anything else. I also have some fruit during the day. But I never leave out the grated carrots. I wonder, perhaps there is a doctor out there who can tell us what he thinks. I think we all underestimate the humble carrot. Well, it's worth a try, isn't it? Love, Elisabeth.