Struggling to cope with ostomy

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Greg5056
Posts: 5
Joined: 2017-12-28 03:57:07

Struggling to cope with ostomy

Post by Greg5056 »

Hi I'm 32 and have recently had surgery to remove my rectum anus and large bowel so I have a permanent ostomy, since then I'm am struggling with it ,my confidence has gone it's affecting mylife to the point i constantly worry my wife will leave me for someone who isn't sick all the time and for someone who doesn't have a bag it is causing so much problems at home I never want to leave the house because I hate how even with clothes on I can see the bag. is there anyone else that's been through this and How did they cope. I have been to the doctors who just want to give me pills all the time.
Murph00
Posts: 175
Joined: 2014-01-24 14:16:12

Re: Struggling to cope with ostomy

Post by Murph00 »

Hey Greg

Know that you are not alone. Many of us have gone through the same issues and fears that you are experiencing. The first few months are the worst. I can remember crying to myself, thinking I don't want to go through life like this. As you learn to live with your ostomy things will get better, your confidence will come back and your wife will be there with you!

I know its cliché but, "it is what it is". We can't change the hand we've been dealt but we can make the best of it. You have a full life ahead of you and you'll be able to do everything anyone else can do.

Can I suggest you post this thread in the general ostomy section of the board. It will get more traffic there. Also, please let us know if it's an ileostomy or a colostomy. If you have a colostomy and they managed to save a good portion of your large bowel, you may be a candidate for irrigation which is about as close to "normal" as one with a colostomy can get.

Best,
Murph
Testicular Ca 2007
IV Colorectal Ca 2011
Colostomy 2011
Irrigation 2014
Lung resection x2 2012,17
Greg5056
Posts: 5
Joined: 2017-12-28 03:57:07

Re: Struggling to cope with ostomy

Post by Greg5056 »

Thankyou for your message it helps hearing from others who have been through similar problems
DonTX
Posts: 3
Joined: 2018-06-04 19:06:25

Re: Struggling to cope with ostomy

Post by DonTX »

I was / is in your mental state however my colostomy is temporary (I hope). One thing I realized a couple of weeks ago is that while we know the bag is there and we can see it under our clothes, most people don't seem to notice or maybe they just don't care. Either way its fine with me. Regarding your wife, I can only say, try to talk and be honest with each other, that can be hard. I am coming up on 30 years of marriage and we have had our issues, but we always try to talk it out no matter how hard. We lost a child 21 years ago and at that point we made a pact to be honest with each other regarding these types of things. Hang in there.
Nomadic
Posts: 20
Joined: 2018-10-26 18:16:43

Re: Struggling to cope with ostomy

Post by Nomadic »

Yeah, as a new ostomate, I'm trying to get used to my new normal too. Before I go back to work, I wonder about wearing the bag in my uniform and the random weird noises. I'm interested in some of the bag pouches and binders and wonder if others have opinions on them.
sassie
Posts: 164
Joined: 2018-10-19 19:22:16

Re: Struggling to cope with ostomy

Post by sassie »

I'm 9 months into my colostomy,its permanent and i had Anesthesia amnesia so it was 2.5 weeks before i knew what had happened to me,yes it was a shock and it has taken me at least 5 months before it sunk in, this was for life,So to deal with it, i gave my stoma a name and all knew if i said" Alice needs etc." just what i was talking about, funny how fast family and friends now ask" hey hows Alice doing", Alice seemed to have gotten her own personality and moved in and i have adjusted to this.
It does take time, time is your friend right now,You will adjust because ,when we have no choice we will come to accept, and also be sure that people are more interested in what they look like then noticing a small bump in your jeans... No one notices unless you draw attention to it... There is life after all you have gone through this and it can be a darn good one,it just will take some time..

Best of luck, sassie
agichk
Posts: 37
Joined: 2019-03-24 18:57:19

Re: Struggling to cope with ostomy

Post by agichk »

Greg:
I just had surgery 3/4/19 and tell you that I am going thru everything you have said. My husbnad makes it a point that we get out of the house daily unless I am not feeling. Clothes is a big issue I had and when I put on while in the hospital, I broke down and still not seeing any improvement in the abd size around my waist. I still have wound that is draining and has staples. I am used to tucking in my shirts for jeans and going about my business. We have had to get some athletic type pants at Target as I do not have much with elastic waist band that will not be too tight but try to hit things with T shirt hanging down.
I hope things have improved for you since your post. Please share what helped you as I struggle daily and some days are really all day.
FAP S/P right colectomy 5/06, completion colectomy 2/10 & ileostomy 3/19
Gig' Em
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