Angry and Tired: Coping with Life in a Bag

I felt like I had to post this morning. I haven't been on this site for a bit. Someone asked me if I was depressed. I said not really, just pissed off. I am angry that I have to wear this bag of s... for the rest of my life. I feel like I am going through the stages of grief and anger is what is happening right now. I know, chin up, think of the alternative. But I am just so tired of it. I worry all the time. Worry about a leak, the smell, people finding out and big for me right now is summers coming and I have to buy a whole new wardrobe to cover this thing up. That's just where I am right now.

Oh Pammer, do not feel bad about posting anything. What you have said is mild compared to things I have posted. (Not necessarily on this site, I think I've been rather mild-mannered here.) ;I still hate it when people say to me "think of the alternative" "you're alive, you should be happy". I can read it and just talk to the screen but when they say it directly to me I want to scream. My brother said it recently because he was in my room upset with me because I didn't socialize like I use to. When I asked him how much socializing would he want to do with a bag of sh** on his belly and an as***** (which I'm not even supposed to have) that leaked all kinds of colored crap and hurt like hell when you just tried to walk and sit. He said "at least you're alive" ;. I glared at him, snorted and said "maybe I'm alive but I don't call this living". There have been days I have thought of the alternative, a lot. But not in the context that it was meant by others.

I hate this thing too. Every second of every day. I have had mine since last July. I still have not figured out what fashion I like. So far, there isn't much except my nightgowns. I don't even like locking my door and going naked anymore like I use to. I still worry about all the things you do. Only difference is, with the help of some friends I have met on here and also a gentleman that has become special to me, I have been able to push it to the back of my brain most times instead of it being the only thing I think about. Time has probably had something to do with that also. But, trust me, I am still working on it every single day.

I know what you mean when you say this is not me. Somehow we have to morph into someone we like and hopefully it will be a reasonable facsimile of the person we used to be before this. I really liked her. No matter what anyone says, there are some things that are permanently changed and there is nothing that can be done about that. But adapt I will, as I have had to do so many times in my life. I will stomp my feet, pound my fists, whine and cry every step of the way until I figure it out.

My Dad told me once, a long time ago, when I was so distraught I didn't think I would make it another day; pull yourself up by the bootstraps and do what you gotta do.

You will have some really good days and, eventually, they will outweigh the bad ones. I can't wait for the day I don't think about this at all.

P.S. Just read your profile. OMG, you have kids too!!! ;Pam, you are stronger than I am. I couldn't handle kids and this too. You go girl!! ;I don't have an illi thingy, I have a colostomy - but it's still the same wonderful daily crap.

If you want, ask Ed (Anoniem18 or something like that) for my Skype. I know if I put it here, I will probably get in trouble.

HUGSSSSSSSS

Kevin here... permanent colostomy due to colorectal cancer... rectum removed too. Surgery was December 2009 with chemo until August 2010. I'm in the same boat as you two ladies, but I've had more time for things to come around so to speak.

Summer is HUGE for me too, as I live five minutes from the ocean. Beach, pools, fishing, golf, BBQ's, friends and family, and all that good stuff. I was frustrated just as you are but over time I was able to adapt then overcome all of the "obstacles" I was obsessed with. You find the right combo of ostomy products (I like Hollister 2 piece) so that it's not noticeable or skunky, my stoma is right on my beltline so I go just a little baggier, shirt not tucked, seems to be working so far. I'm tall and thin, far from a fashion plate, but to look at me you would not know I'm packing a pouch. This will be my fourth summer after surgery so the point I'm trying to make is give it some more time.

Our friends and family members care for us and love us, and remind us to stay positive, keep our chins up, coulda been a lot worse, and... blah blah blah. All the stuff we hate to hear when we're not feeling good about ourselves. They're right though!!

Eventually the butt stops leaking, heals, the pain subsides, movements become kinda regular. Sorta like it used to be! We're back in a routine! That's how it was for me with support from my wife, family, and friends. I don't think or dwell on my colostomy all that much anymore. It's impossible not to think about it at all, but when we accept it as part of our daily routine, it's so much easier. It'll get easier for you as well, just give it more time.

Hi, I've had my stoma (BG for "babygirl") 5 years so I do understand. I send positive energy and all my love to those going through this initial stage. It hurts and it sucks. It took me 2 years before I stopped looking in the mirror and saying "What the "F..." happened to you"? Believe me, this too shall pass. However, you MUST play a part in your physical, mental, and spiritual healing. I can't love myself and hate "BG". I won't ever get used to her but I have and am still adapting to her. Change your thinking, you change your life. And so it is.

I think it's normal to grieve for a loss, because after all, you've had one - the loss of part of your "normal" functioning. I went through it too, went through the shell-shocked "I've been mutilated" phase, etc., etc., that we're all familiar with. If it helps, that ends.

I don't see my stoma as separate from me or alien to me; I never named it because it's ME, it's just a part of me that's not typically exposed, lol. I don't name my arms or legs, what the hell would I name my intestine for, LOL. I thought that the people who tried to get me to do that were insane back when it first happened, but the only reason that was encouraged was because it helps a lot of people more readily accept the change that has taken place. That's the key, I think, to adjusting finally and being happy with yourself again. Acceptance. Which is the final stage of grief, I believe?

I will say this - even in the hospital back when it first happened - I was determined not to let it stop me from living my life the same as I always did. DETERMINED. My mother smiled down at me in my hospital bed and said, "Well, you'll never wear a bikini again, but you're going to be just FINE." I remember clenching my jaw in my morphine haze and slurring, "You're wrong." And she was, because I did.

I did wear a bikini that year, I spent fifty bucks on an ostomy bottom and guess what? No one knows but me. I go kayaking, I go camping, I go out dancing with friends once a week or so, I drink alcohol, I go to fairs, I DATE, I went on vacation to New Orleans this past March and had the most amazing time of my life even though that damn appliance leaked DAILY and I had to change it daily, one day even twice LOL. BUT I DON'T GIVE A DAMN. This is my life, it's the only one I get, and I am going to live the shit out of it - literally and figuratively - until I really am dead for real. I'm not saying that you aren't going to have fears or feel humiliation for your condition because it happens. But true courage and true bravery are forging ahead and meeting things head-on even if you're terrified, and true grace is holding your head up when you feel humiliated and separate and saying, "This is the price I pay to live, and I am strong enough to pay it." People will not look at you with pity or disgust, believe me. They will look at you with admiration and they will fall in love with you for your strength and attitude. What you send out you get back tenfold, and I will tell you that I am out and proud about my ostomy and no one has EVER shied away from me.

Lots of love to you, and all the courage and positivity I can muster :-) XOXOXOXO

Well said!! Great post, Megan!!

I don't post very often but I somewhat know what you are feeling! You sound young and I think it is harder for

younger people and find it very hard. I am to be 81 years old this year and I had my ileostomy one year ago. I never imagined such a thing happening to me. My doctor did not explain to me at all about what to expect, I wish he would have and maybe I would have handled it better. I live in a real small town so there's not any support here. That would be 60 miles from here.

And I feel so self-conscious all the time yet I do know if I don't tell anyone I meet, they would not have any idea. I had major problems with the bags at first but even though for the most part this is not a major problem with that anymore. I still worry about odor, loose bag, and the horrible loud noises that come from the bag, all on their own with no warning, that is so embarrassing, so I have become basically a recluse

and I don't want to always stay home at this stage of my life. I don't know what else to do. I have been at the store and I hear these noises coming from the bag, just took off and left with no purchases.

I am so sorry that you have to go through this and at a young age. They do make covers for the bag to wear with swimsuits so maybe that would help too.

What exactly is the difference between a colostomy and what I have, which is an ileostomy?

This is my first time to post. Still so very new at all this and trying to figure out myself how to handle this bag attached to me. Just got mine Christmas Eve 2013. I admire all the young people for your encouraging words to everyone. I just turned 71 and have felt like life was over until I hear all the positive input from those half my age. Thanks to everyone.

Meg...what a wonderful attitude...nearly five years ago it never occurred to me as I dealt with U colitis, that by the end of July I would have an ileo...but here it was, the surgeon gave me a choice...Dimethaid and prednisone and all the side effects and uncertainty of drugs, or an ileo... where would the drug route lead? I chose surgery. I also made up my mind that I was going to sail the 26 ft sailboat I had purchased the year before solo by the end of September... it took 7 weeks post discharge from hospital but I did it. After a year of evaluating to reverse or not, I made up my mind that I was going to live my life with the bag...it was a decision I have never regretted. Do people treat me differently? No, does it cause me anxiety? Yes, but only when I sit in the middle of a row at a movie etc and I'm not sure just how much longer I should hang on. Have I had blowouts at the most embarrassing times? Oh, for sure...but people are gracious and helpful and understanding. It may be easier said than done for some, but having a positive attitude, let's try another way, I have a bucket list of goals kind of attitude, is the only way to deal with this transformation we have to go through to live joyously...I say put on your best smile and get out and live like tomorrow is your last...our attitude, by the way, is a choice.... Cheers

Sweedo,

A person with an ileostomy no longer has a large intestine, the bag sits at the end of the small intestine. A colostomy is somewhere on the large intestine. Some have theirs on the ascending large intestine so their output is a bit more liquidy like an ileostomy. Some have their colostomy on the transverse and some on the descending part of the large intestine which means their output should be more like regular poop. Hope that explains it for you. :)

Lisbett

Hi Sweede

An ileostomy is when the small intestine is brought to the skin surface as a stoma. Food has passed through the stomach and is in a pretty runny state of digestion, which means there isn't much control. People with ileostomies can find it hard to keep weight on.

A colostomy is where the large colon is brought to the skin surface. The stools are more formed, and some people will just have one or two motions a day into their stoma bag. It's usually a bit less smelly too.

Hope that very basic info helps

Meg!

Oh, I resonate so much with your post!! When I had to go see the WOCN the first time and they were getting all cutsy about a name for my stoma, I declared EXACTLY what you said about that!!! lol! RIGHT ON!! And yes... it is up to us to become the heroes of our own lives! Nothing like telling us what we "can't do" to get us on track and fired up ;))

Pammer,

I still have days when I wake up and think "What? That's still here?"...lol....but most of the time I am doing well. It will be 2 years since my last surgery end of May. I will be drinking champagne...because I CAN!! Celebrate the good...deal with the rest.

Big hug

Lisbett

Hi all.

I'm in not quite sunny California at the moment (Monterey).

I have been to Africa, Australia, New Zealand, Canada, and most European countries.

I am here celebrating my golden wedding.

I was married at 18, developed ulcerative colitis at 20, and had the operation ileostomy at 28.

I could have been dead.

You've got a new life - live it.

Hi all.

I'm in not quite sunny California at the moment (Monterey).

I have been to Africa, Australia, New Zealand, Canada, and most European countries.

I am here celebrating my golden wedding.

I was married at 18, developed ulcerative colitis at 20, and had the operation ileostomy at 28.

I could have been dead.

You've got a new life - live it.

Yes, Meg, you have an excellent attitude. Good for you. And how great it is, Monsieur Le President, that you had someone that stayed with you all these years to support you and hold you when you needed it, and had the means to travel to all those countries. Congratulations on your 75th anniversary.

I never gave mine a name, either. It seems so stupid to me. But I realize it helps most, so whatever floats your boat. To me, it looks like the little alien monster that comes out of the stomachs of the actors in the movie Alien. Especially when it does its daily growing thing. I know it's not alien to me, it's part of me. But it's a part I would have rather stayed hidden inside; thank you very much.

It is normal to grieve for a loss. But I don't believe that is what Pammer or anyone else is doing. It certainly is not what I'm doing. I really am not mourning the loss of my rectum. I am frustrated and angry some days because it is a pain in the ass to maintain this daily. I hate taking 3 showers to get clean because it won't stop pooping; no matter how hard I try to time it. I hate that I have to stop what I am doing 20 times within a few hours on some days to empty it. I hate the leaks, I hate having to change my bed because of that. Or change my clothes because it backsplashed all over me when I was emptying it. I hate being away from home and I hear it gushing full like a waterfall - and I have no way to change it at that moment. I don't like the pain of the hole that has not healed shut like it was supposed to. I do not like being so tired. But what I really don't like is people trying to tell me I'm wrong in feeling this way and that I should be happy I am alive.

I am working on accepting it, dealing with it, and finding a happy medium. I see this site as a place to vent; good, bad, whatever. I'm sure that is all a lot of us do. Just get it out here so we can do what we have to in our daily lives.

We weren't given a new life. We were thrown back into the same life we had before with new/added challenges. As I said to a couple friends, if I didn't have hope it won't be so bad in the future, I would have never joined this site.

I'm 8 weeks post-op with an unexpected permanent ileostomy. I look at this bag and think about summer and the beach. I'm slowly ticking off things that I did before and seem to be coming through them unscathed, but I know even though my life will never be the same, it's up to me to create a new outlook. I look at people in a different way now when they start moaning about the weather and late buses and stuff. I have the bonus of feeling fitter and stronger than I've felt for years, and I've lost some much-needed weight. The funniest thing that has happened to me so far was when I came out of a disabled toilet at a service station on the A34 at Oxford. A very posh lady who was waiting for the loo took a look at me all nice and fit and tanned and said, "Do you know this is a disabled toilet?" I just smiled and will keep smiling. Stay with it all of you, I'm sure I won't always feel this positive, but I'll have a damned good try.

Hi,

Know how and what you are feeling, I have had my permanent stoma since Feb 2013... I also battled and still do sometimes when I look at myself and have the bag visible.... I have to date not had too many accidents... and those that I did have happened at home... I thank God for his blessings as without the "colostomy" so many of us would be up in Heaven... I have a partner who does not have any hangups... and in the beginning he would actually do the "changing" for me, but I am by nature a very independent person so... decided to go the route of taking care of the "change" myself and it is no problem... works like a dream... I just watch what I eat and avoid food that will cause "smell" i.e. eggs, cauliflower, fish... When in a meeting, I keep my arm pressed on the area so as to avoid those weird noises escaping...

Good luck and chin up, it does get easier...

Well Pammer, I know how you feel. I've had my colostomy for almost 3 years, and I still get angry about it being permanent. Usually in certain situations. Like in the morning after taking a shower and putting a clean pouch on, only for the pouch to start filling with poo. And after enjoying a nice meal and then dealing with the bag filling with poo. Going for a long drive and having to use a public restroom to change my bag, wondering if someone could see me through the crack of the stall changing my bag. I especially get mad when I am at work on a hot humid day and can feel a poo pancake sticking to my skin under the bag. Having to wear longer tops or higher-waisted jeans so that the top of my bag won't show. Worrying about my pouch cover slipping off during sex and my husband seeing poo in the bag. It hasn't happened yet but it could. I could go on and on about these negative feelings. But I never complain verbally to anyone about it. And people who know I have this are amazed by how adjusted I seem with it. I just remind myself that it is what it is. Things could be much worse.

I certainly don't mean to say people can't vent - for sure it's needed and necessary. I personally did have a grieving period; not for the loss of any body parts but for the loss of what's considered "normal" functioning by the majority of people. And I think actually there are a lot of folks who do that and I think that's to be expected, really.

Yes, some days I hate it too - I have plenty of complications with my ostomy, such as it being recessed (you want to talk leaks? haha) and having issues with rashes under the appliance, yada yada. It is what it is. I personally am actually grateful to be alive rather than dead because it just about came to that; I have three children and I want to see them grow up. So I do prefer the bag over the box, even though I think it is insensitive of someone who has never been through this to tell you that you should be grateful. You feel how you feel!

I was, in fact, given a new life - previous to my emergency ileostomy, I was so sick with Crohn's disease I couldn't eat anything for years, I hurt all the time, I was so exhausted I couldn't clean, take good care of my children, or enjoy my life, I didn't even weigh 100 pounds. Do I prefer dealing with rashes, leaks, and a stoma over that? Yes, I do. I didn't get to choose whether or not I had an intestinal disease, but I CAN choose how I deal with it. I can choose to love myself and love life and be happy I'm still here, even with a bag. I can choose to buy things that help cover it up under my clothes (and out of them), I can choose to work with WOCNs and ostomy supply companies to find the right products that help minimize leaks. There are a lot of things I can choose.

So I guess in the end it all comes down to perspective. I wish everyone on here having a bad day, or a bad month, or a bad year, life, whatever, nothing but love, positivity and hope that things will get better so that they CAN enjoy life, because as far as I know, this is the only one we get. Peace all :-) XOXOXOXO

Hey MissMeganM, you said it so well. We’re often reminded to put things in perspective and we should take a lesson from your writing. Many of us had less trouble, fewer problems and less pain than you but that didn’t stop us from bitchin’ and moanin’.

Thanks for your good wishes and special thanks for your humbling lesson which you express by example.

Sincerely,

Mike

Awww, thank you :-) ; I mean, honestly it's fine to bitch and moan, we all do it periodically because it isn't what we wish for ourselves - FAR from an ideal situation, to be sure, lol - and it's good to get that out - but don't wallow in it, ya know? ; I remember when this happened to me - and it was an emergency, so basically I went to sleep not knowing what was going to happen and woke up with an ileostomy (unlike a lot of other people, who at least get to prepare for it) - and I was pretty devastated. I mean, I was only 35 years old. I felt mutilated, like a freak, like I would be repulsive to others and would never be able to live a normal life again. I remember spending an entire day in tears because I didn't think anyone would ever want to hug me again, and I didn't blame them. I was disgusting. It was a horrible feeling.

So I thought, I can't possibly be the only person this has happened to. So I went online with my phone in the hospital and started looking for others and I found this website. I found people on it who DID live normally, and who loved themselves and loved (or at least were at peace with) their ostomies. I said, how did these people do it? ; So I asked them, and then I did what they said and I emulated them. And BOOM! ; It took some time, but eventually I felt positive about it, lived normally, and loved myself :-)

I definitely don't want to be one of those obnoxiously cheerful people, because let's face it - those people are just annoying, LOL - but I have to say that if my words, outlook, attitude, and the way I live my life can help at least ONE person from feeling like I did when I woke up from anesthesia, then it's worth it. I want to put it out there because other people did it for me and it saved my sanity and helped me heal emotionally :-)