Feeling Overwhelmed and Insecure After My Colostomy

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Overwhelmed is the word of the day for me anyhow. I hope it doesn't stick around too long. I had a colostomy done on 01-12-2010. I am a rare case, I'm sure. Adhesives do not like me. I was so constipated prior to having this done, I hoped it would be a charm. No, no, not me.

Much like my worst nightmare... different packages having to remember what goes where and why. But my stoma was not perfect, I was told that it takes 8 to 12 weeks before the stoma size is what it's going to be. 4 weeks down, I just don't know. I have no one who would understand the entire process. Bless my hubby's heart, I think he's taking it 10 times better than myself. I have told very few people about the procedure because I wouldn't know how;

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Hang in there. I know it's tough. I had an ileostomy on 7/1/10, so I am 5 weeks in and I too do not like it, have had my own range of complications and issues. It's really good you have a supportive husband; I have a wonderful supportive wife. I have a friend through this website who has also given me his time and support, and that goes a long way. If you don't want to tell people you know just yet, then don't. Tell the ones who are closest to you first, and the ones you know are supportive, and only tell them when you are ready, but rely on your hubby, and talk to others on this website; it really helps... If you tell them and make a big deal out of it, so will they. But if you don't, then chances are they will be okay too.

Hang in there and remember it's okay to have some really down days, just don't stay there too long! It will be a nightmare forever, or a blessing forever, dependent on how you look at it. Mine saved my life, so as much as I don't like it, I am grateful as I get to hold my wife's hand again in two more hours once she gets home from work, so it is all how you look at it.

Hang in there.

All the best.

Jim.

This is my second ileostomy. I have had it for nearly 4 years now. At first, it was tough. Not knowing what was right and what was wrong, paste everywhere, flanges lifting off, bags blowing off, not knowing what to eat, but as time went by, this all became second nature. You will make it through; you may not like your stoma, but it's what will give you a quality of life that you didn't have prior. Best of luck to you and Jim; this site has a lot of supportive and caring people. All you have to do is ask; we know and understand what you are going through.

Steve

It does get better. Keep telling yourself that. It does.
Rick.....

Hi, welcome to the forum - it can take months to get to the point where you dare go out and face the world again, but you will get there - we have all had those days when the thing won't stick and drops off whilst shopping; at a restaurant, etc., and one day you will look back and laugh.

There has recently been a thread about everyone's worst 'shitty' experiences, so have a read of that and get a laugh too! Also, there are tips and advice on ideas to get the damn thing to stick, so do read those threads too. Take it one day at a time - it will get better! Keep smiling, Rachel xx

Living with Your Ostomy | Hollister

I know it's hard sweetie but we're here for you if you need us

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  Look at the sweet friendly responses already.  We totally understand....and it WILL get better!  

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  I have no doubt "overwhelmed" is the perfect word to describe the many things you are dealing with right now.  But it's going to be ok.  Hope you keep us up-to-date on how you're doing!  ~Hugs from your Doe

How are you doing with the adhesive problem?

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Yes, it is hard, depressing, and at times you think, "I can't do this," but you will do it, and things do get better!

Hang in there.

Eddie

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I have been reading my journals from when I had my ileostomy so that I can blog the experience for folks like you.

Yes sir, I forgot how ashamed I was because the appliances kept coming off and I lay in a pool of bile and feces. It was traumatic, and I spent most of that first year hidden away from people until my body and mind fully recovered.

When it did...wow! And I mean wow...I was able to live drug-free, go to concerts, festivals, camp, kayak, finish college, return to the workforce, have pain-free sex, become a triathlete, and train and complete two 39-mile marathons.

Don't push yourself. Take your time. If solitude is what you need, take it. Just don't isolate yourself too much. We are here.

Peace!

I also hope you join the site so we can email you. It's worth the investment.
Thinking of you.

Jim put it really well.

I too was overwhelmed at first (ileostomy Dec 15/09) ... but each day is better. For me, there was a 'hump' -- and once I was over that and felt stronger physically and emotionally, it all started to feel normal.

Yes - hang in there - and talk and ask questions - life is good
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- every day above ground is a good day.

When you are feeling low and think you are on your own, just post up a chat on here. There are many people on here who have walked a mile in your shoes. When you think nobody understands how you feel—there are many people on here who know exactly how you feel, and maybe even worse.


I'm not one of those who believes in all that "Positive Thinking" nonsense. Positive thinking doesn't heal wounds or make shit go away. However, what my little secret was always to project myself a couple of months forward—and say to myself in X time I will be driving my car, visiting friends, shopping, going to the park, etc. That X time passes fast, you look back and think, "Hey! X months back I was a useless invalid! Now look at me!"...Now what was that show I wanted to go and see...


Hang on in there, don't push yourself too hard, or punish yourself...It wasn't your fault...

Projecting positively into the future is a great idea ... and if that isn't "postive thinking", I don't know what is

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To each his own ... but I absolutely believe that positive thinking is not 'nonsense'.



Just do a simple test ... start thinking downer, depressing thoughts for awhile ... this bag is the worst thing that could happen, I'm not attractive, boy I smell, why did this happen to me, I'll never xxx (insert something) again, etc ...



Then start thinking positive thoughts (even - and especially - if you're feeling physically bad) ... I'm HERE, this bag isn't so bad, I still get to xxx (insert something), I don't have to shit in my pants anymore, etc ...



Sure there are the bad times when you think that positive thinking/projecting won't work -- and of course those are the times you need it most - and it does help, even just a bit.



love to all from your very own Pollyanna (I mean Beatrice)

As stated above, we all felt this way and got through it. Stick with us and we will show you that life is still there. Please create a profile so we can help you with whatever you ask. We have a lot of experience in this forum/site, so please don't think you are alone with your problems.


Jax

I had my colostomy since 03/30/09. I hated it. I am single and figured no man would want me with this bag on my side. I have been going to a Cancer Support Group for women run by Hopespring Cancer Support Center. It has helped me a lot. I have been going since before surgery while taking chemo and radiation. Most of the women have breast cancer, one has endometrial cancer, one has ovarian cancer, and two of us have colon cancer. A few weeks ago, we were talking, and I opened up about having the bag and its ups and downs. After that day, a lot of the women with breast cancer stopped feeling sorry for themselves with what I have to deal with. Changing wafers, emptying and changing pouches, and also the expense of buying supplies.
It has also helped my self-esteem when I bumped into an old schoolmate that I had not seen in a few years. It turned out he was single also. After a few coffee dates talking about school and catching up, we talked about my cancer, and I told him about the colostomy. He is okay about it, and we are now a couple. He is very supportive about it and says it does not take away from the woman I am. We even joke about it.
My family is supportive about it. My daughter got me a special present for my birthday, and it has not arrived yet. She said jokingly, "When you see what we got you, you're going to shit your pants!" I said, "Well, I better make sure I have an empty bag!" We both laughed. Got to have humor. Things are much better. Also, this site has helped very much too, reading about other people's experiences.

Things have to get better, I always tell myself. I'm 26 with an ileostomy, and I hate it as much as any person, young or old. I had my first surgery done in March of '09 and had to have a resection in August of '09. They had to take 11" out. To this date, I cannot eat, and what was supposed to be the solution helped another problem. I'm now on a TPN bag, which is no fun. But I have two wonderful boys, 4 and 8, and a husband I've been married to for most of my sick life. It's been a struggle, but we would not have been able to make it if it wasn't for the heart in our relationship! I know there are so many people out there who have it worse, and that doesn't mean this doesn't SUCK, but I have to remind myself that there is worse out there. My children carry me through a lot, and they don't even know it. I just want them to know, if anything, that they can overcome any problem, as long as they try and keep reminding themselves that they are worth it. I hope anyone out there with any type of problem, especially colostomy or ileostomy, can find self-esteem and confidence. It's something I fight with every day, and my husband tells me I'm beautiful no matter what, but it's hard to believe when you have a bag hanging. It's hard to ignore a stoma, a piece of your insides hanging out. It's not attractive by any means, but I find little ways to cover it up, and they have some pretty cool stuff to help people like us feel comfortable in our own skin. This has helped somehow, I hope, just to let you know you're not alone! I hope all gets better for you!

I really appreciate everybody's input. I will be updating my profile within a couple of days. It's been so helpful knowing it is what it is. I will get through it with my head held high.


XOXO

I had a complete resection of my rectum and anus about 30 days before you (Crohn's disease 35+ years). I am having good luck with the appliances, but not until I talked to a lot of manufacturers and went through many samples (sometimes more than one a day because sometimes you can just tell "this isn't going to work!"). Depression and frustration are still issues for me, but I am trying not to hide it, just handle it very matter-of-factly as if I had my gall bladder out and move on. Deep down, though, I still often hurt. As you read posts on this website, you will learn that this is not uncommon.



I have learned to put on a good front, but I definitely feel your pain—physical and mental. It has all gone wrong at some time or another. My wife has been my cheerleader, rock, encourager.

I want to thank each of you who responded to my post. Things are still the same, but I'm taking it a lot better. Pouches still don't like me (and I don't like them). With all of your kindness, it makes me want to try more. I'm going to have to have altering surgery sometime after April; they are getting me in to see another specialist within the next month. Surely something will have to work soon. Until later...

Hey, hang in there. It does get better eventually. We have all had good days, bad days, and days from hell. You just have to keep trying different things and methods until you find what works best for you.
I know it is really hard to understand and to try to figure out what to do next when there is nobody to give you a one-on-one explanation, but any time you have a question, concerns, or just a need to vent, there is usually somebody on here with the history and experience to help. Or sometimes just to cheer you up when you are at the end of your patience. Don't give up or let it get to you. Good luck.
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Pat

I had a proctocolectomy and colostomy on 12/7/09.  Physically I have recovered well--still some soreness but not severe.  The emotional trauma has been tough but I must say, I am pulling out of it.  I have been very fortunate that adhesives have done well (after working through many samples from all the manufacturers), but the placement of the stoma is in a location that sitting in one position very long starts to tear it off, bending to tie my shoes is a struggle.  I've taken my wife the movies and every time the barrier has come loose during the movie and I end up having to hurry out.  



The BIG obstacle for me, I learned without realizing until I solved it, was that I was so afraid someone would notice the protrusion of the stoma at my belt line!  I have always been slim, flat abs and do not like to wear bulky clothing.  A couple of weeks ago I found boxer shorts that keep the transition to the stoma relatively smooth so it is a very slight hump and not noticable.  My attitude changed immediately.  So sometimes I think we may not even know what is REALLY bothering us.  For me, it was pride!  



And, by the way, yes, the swelling will go down over time!  Mine was about 2 1/4 inch diameter when i got out of the hospital and now, 3 months later, it is about 1 1/4 inch.