Adjusting to Life with a Colostomy Bag - How Long Until I Feel Normal?

Hello everyone, I'm going into my 6th month since receiving my colostomy bag.... How long does it take to feel like me again? Some days I do fine, other times I wake up and I'm like "OMG, what is this creature on my belly?" I don't think it has completely set in that I have this for the rest of my life... It gives me nervous butterflies if I think about it too long. Those of you that have had this ostomy longer than me... How long did it take you? Your response is very much appreciated. Thanks a billion.

Hi, Dr. Fields! (Like it?)

Six months... you're still a virgin in my books! At 6 months, I was still trying to figure out what my ostomy would and wouldn't do. At 6 months, I would still get surprised by leakages and wondered if I had the right bag (good time to reevaluate that). At six months, my colostomy was still a complete mental panic.

It sounds a little silly, but part of my emotional healing came from my family designating me to my own bathroom (because emptying my colostomy bag stinks so badly). Hubby installed a power fan. Kids avoid it. So I have 100% control of a LITTLE room. It's a little bathroom that has barely enough room for a little sink, a small shower, and a toilet. But in a tiny way, it's MINE!!! I am continually adding to it, with fun mirrors, wall hangings, painted mantras, and neat lighting... in short, my colostomy shock finds a peaceful exhibit in a mini-bathroom space. In short, art helps.

I had my surprise colostomy in 2014. Now, in 2017, I often wake up with a WTF! complete surprise that I have a colostomy. And then I remember and start my day. Your bag is your stoma's friend. Have you named your stoma? Mine's "Holly."

Don't be alone with it. You found us, keep with us. It IS tough, but we're here for you.

Hi.

Get onto stoma irrigation if you can, then you can feel perfectly normal.

No bag, just a cap. What's not inside you, can't come out.

If you can, it's the perfect solution to incontinence.

John

Hello everyone.....for the past month, I have been trying to regulate when I go, but it still just does it when it wants to. I mean EVERY TIME I eat, it starts emptying ten minutes or less. I really have to be careful. I'm still a little hesitant around some of my family. I'm not depressed, I don't believe, but I think I'm just frustrated because I can't time it right so that I'm in control when it acts up. I read some of your posts and I'm trying to understand how some of you time it. It sounds so simple. I know it is going to take a little more time, I just truly wish I was a veteran at this.

When you get an ostomy, you will get two problems.

- An ostomy to take care of

- The problems between your ears

Taking care of the ostomy is a question of practical handling, and can be learned from ostomy specialized nurses.

The problems between the ears are, in many cases, imaginations because of lack of knowledge and fear, most of which have no reason.
Try to concentrate on family, friends, hobbies, and other interests, then you will find that there will be less room for worrying truths of the ostomy.
Try to have daily routines because if you have the same routine every day, the intestine will use the same routine. Irrigation as recommended could also be a good solution.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Dr. Fields,

Feeling "normal" is relative to how long you have your ostomy and how you are managing it. Some never feel the same again, and it's understandable. Your body has changed, your routines are different, so it's unrealistic to feel the same... Aiming for a New Normal is a challenge, but it will happen when you get proficient and comfortable with successfully managing your colostomy.

If your goal is to "time" your output, then consider doing irrigations. If you don't know how to do it, request an ostomy nurse, and if that's not available, check out the videos online. One is quite good, but the setting is in the hospital, so it looks more like a medical procedure. Basically, using special tubing, you are giving yourself an enema... Once you fill yourself with water, you keep it in you for about 1/2 an hour... A special larger pouch, called a sleeve, can be attached to your wafer. When your body is ready, it will push the water/feces out. I think the whole procedure takes about an hour. People do it either once a day or every other day, whatever works for you. To the best of my knowledge, that's the only way to "time" colostomy output. I have an ileostomy, so my output goes continuously, and I wear a pouch with a spout on the bottom. I empty every few hours, depending on the output. If you have any questions, ask colostomates who irrigate to write to you, to tell you what they do. Best of luck to you.

Marsha

I have had my ostomy for over 40 years. It took a few months for me to accept it and now I just think of it as normal for me and part of my daily life. I have fully adapted to the routine I must follow. Sure, I wish I didn't have it but that is not part of my reality.

It seems that it is harder for people who don't have an ostomy to accept mine than it is for me to accept it.

Best of luck and things will change with time.
Tom Schneider

Hi Tom, do you irrigate or still change the bag?

Thanks, Marsha, for the info. Very helpful.

Denise

Dr. Fields,

The only way I have some control over my colostomy is by irrigating. I say some control because sometimes I have some output throughout the day. It doesn't happen often though. I don't use a cap. I use a mini pouch. It took me some time to feel like me again. I was depressed because my stoma looked like a creature out of a Syfy movie. It was prolapsed and I had a hernia to deal with. Everyone is different when they get to feeling "normal" again. I have a stoma that looks "normal" now and life is good.

Hey Drfields, you’ve gotten some good advice here. From these replies you can probably feel the compassion and desire to help you. To expound a little on what Marsha offered, your new normal is the same you with some physical changes. How you accept the new you might be more difficult. It is what it is and there are all kinds of things to try. Some will work better than others and pretty soon you’ll choose what works best for you. You’ll find a routine, get very comfortable with it and, maybe, get a little excited about sharing it with others. While your brain is watching you work with the physical part, make sure it understands you’re the boss, you’ll make the whole thing good in due time and don’t let it even try to bring you down. Invite your brain to celebrate each success and keep us posted on how well the new you is making out.
Respectfully,
Mike

The ostomy is the new you. I have had one for 18 months and still struggle with the thought of leaking.

It will happen again I am sure, just carry supplies and extra apparel. Make it happen.

Dr. Fields

My sister, who has had a colostomy for 2 years, seems to complain about the same problem. I myself have had an ileostomy for 65 years! I have concluded that my sister, and perhaps you, find it unnatural to have human waste anywhere on the body. She feels that a one-piece appliance is the only thing to use and that she must change anytime she has a BM. Consequently, she stays home all the time and hates her colostomy. That is the purpose of the pouch...to collect human waste. It's okay to have the bag fill up a little and to drain it without having to change everything. A drainable pouch gives you that freedom and will allow you to socialize.

Dr. Fields,

I completely understand. Although I "just" have a urostomy, I have the same fears... the same anger... and it makes me think of what "normal" really is. Accepting your situation? Acknowledging the anger? Making things work for you? I just don't know...

Know that I am in the same space, and somehow we will make it through....

MMM

How long did it take to feel normal again... maybe about a year for the most part. Physical recovery and getting on my feet was difficult, I had a lot of weight to regain and didn't like feeling weak after walking a few steps. Mentally it was not too bad as I knew I would have to have my stoma forever.

You have to celebrate the good days and work toward having as many as you can make. You can do it, one day at a time. Eventually you will notice it's routine, and no big deal. Be kind to yourself, set yourself up to be happy and go on with life, after all it's what you make of it.

Hi, I never contribute to these chats, but I need some help. I have a permanent colostomy due to incontinence. It was done March 13, 2017. I am having a hard time coping with the way my clothes feel and fit. I have had to go up a size in shorts and pants, which is very hard for me to deal with due to the low self-esteem which led me to be anorexic. So anything which means a bigger size is devastating to me. I am trying to improve my eating now and doing okay at that. But when I think about how none of my pants or shorts from before colostomy, I get so depressed. I would like to know if anyone else had this problem. Between the bag and the stoma sticking out, pants and shorts are so uncomfortable for me. I know this sounds so vain, but being anorexic is a disease I have had to deal with all my life. If I feel big and fat and clothing is tight, I go into a depression where I hate myself and do not want to live any longer. Thank God for my husband encouraging me to improve my eating and his support with the new me, post colostomy. Anyone who has gone through this, please tell me your story. Thanks

Hi.

I also have a colostomy, and I have very little trouble.

If you can irrigate then your problems are largely sorted since you don't need a bag. Just a small stoma cap. If you can irrigate (seek medical advice) you simply need to set a little time aside each day to irrigate and life is normal again.

Remember - what's not inside can't come out.

Do look at irrigation.

John

I named mine Stinky? Crazy right? But I do wake up some mornings forgetting about the fact that I have a permanent colostomy. Until I sit up and my bag is fully blown up with air. Sometimes it feels like I just got it. Still can't eat what I want yet but working on it.

Hi.

To vent the bag, try doubling the 'relief' vent hole and squeezing.

It sometimes works.

As I said before, if you can, irrigate, and ditch the bag.

Get normal again.

John

Hi, I had to wear a bag for 4 months between the colectomy and the reversal. That was 19 years ago but I recall how weak I was for about 2 months. Losing 60 lbs in less than 4 weeks will do that, I guess. My J-pouch works but I'm virtually chained to a toilet and my life quality suffers. Hopefully you're not knocked out as I was and you feel more energetic and normal soon. Barring any blockages or leaks, you should. Peace, brother.

Hi.

I had a rough time, but I'm OK now.

Only wearing a stoma cap is great, as despite having a colostomy my life is as near normal as it was before. No worries and no bags to empty.

John

Good to hear you're on the mend. I don't miss the bag at all LOL. Take care.