Struggling to cope with ostomy

[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.

[steiconi]

Hi Greg, welcome to the world of ostomy.
It sounds like you might be feeling depressed about your recent changes. That's pretty common, I think. If you don't want to take antidepressants, how about trying talk therapy?

And have you talked to your wife about your concerns? It'd be pretty cold to leave someone just because they've had a surgery. Do you really think she's like that?

[Mysticobra]

You left so much out of your post.
How long you've had the ileo?
How long you've been married?
You have to give it time.
This is something you don't get used to overnight.
Yes.
I've gone through it.
It's not easy but you can get to a good place and you will.
Richard.

[Greg5056]

Hi Richard I've had the ileostomy just over a year and have been married for two years. I hope it does get better because I have been ill none stop for two years and it wears u down after a while.
Thanks for the message

[Mysticobra]

Hi.
You can private message me if you'd like.
Your in a fairly young marriage.
And your ileo.
I'll be married 40 next year.
I'm 61 now and still work on a freight dock outside in the cold.and heat.
The ileo does not slow me down. And now that it's cold I also have to wear layers to stay warm. Pain in the butt when ya gotta empty.
But seeing how I'm older and having the ileo at my age doesn't bother me. I don't know what I would think had I been 32 going through it. Physically it would have been easier.
Mentally being young it's gotta be tough. But you have to have your mind set that it has made you better. That's why we do it. And it certainly has made me better. Of course I would not want to have it but I do and have to make the best of it. You can't dwell.
It will eat your mind up. I dwelled for 2 years with a j pouch that was slowly killing me. Mentally it was getting to me.
I finally gave in and did it expecting the worst. But it wasn't. It's not.
My wife does not care that I have it. She watched me suffer. And sees the results.
Private message me if you want to.
Richard.

[BillV]

I can personally relate to your concern about being rejected by your wife after getting an ostomy. It happened to me, and fortunately was a “good riddance” situation. I suggest that you first have a good conversation with your wife to see if your concerns are justified and to let her know how you are feeling about your ostomy. It is normal to feel down about life after what you have been through, but things improve over time. In my case, I had a third surgery to create a J pouch which significantly improved my quality of life and eventually I met the “love of my life” and have been happily married for 8 years. If you are not able to achieve an acceptable quality of life with your ostomy, there are two alternatives that do not require having an external bag with its associated issues: the Koch pouch and the BCIR. Lots of information is available on the internet about both of these procedures, but you are not yet at a decision point. I hope that things turn out well for you.
Bill

[Diane C]

Hope you will cocntact some of the folks who replied personally and give us more info. An ostomy can save your life. In many cases, it is handled easily but it takes a while to learn the tricks. I had my ostomy surgery in 2002 and although I'm not married, I was dating -- and my boyfriend was a total support. We didn't make it -- not because of the ostomy -- but I've dated since then and the ostomy has not been an issue. When someone really loves you, should a pouch really get in the way? I guess it depends but wonder how your marriage was before the surgery and I do not mean to criticize. We each have our needs and wants and what we're able to tolerate.

Support groups are in many communities. If there is one near one, I recommend you attend a meeting. See http://www.ostomy.org/Find_a_Support_Group.html to see where they are located.

Wishing you better luck in the new year.

Diane C.

2002 Colostomy

[danaj]

I was 39 when I got mine, but it was after a long illness with crohns and I was SO sick at the time I knew I had two choices: a bag, or a box (coffin). My first time out of the house I panicked when I realized (1) my bag could fall off (2) everyone could see it (3) everyone could smell it (4) my pants were going to fall to the floor. I left and ran home. Only later did I realize (1) that bag is NOT going to fall off (2) no one could see it because NO ONE WAS LOOKING FOR AN OSTOMY BAG AND WOULDN'T KNOW ONE IF THEY SAW IT. (3) Only I know there's an odor and that when I'm in the bathroom LIKE EVERYONE ELSE (4) my pants have never been known to fall down and hit the floor.

Where my husband was concerned, he said he would mind if the bag was on my forehead as long as I was alive. Intimacy? Honey, that was 40 years ago and I STILL feel self-conscious when I'm nude and it's not because of my age. Some of us are just wired to have an overly enlarged sense of how "broken" we are, or how awful we think we appear to others. Some people are not wired that way and adjust by having confidence. Let's say your wife takes a walk and doesn't come home.....you will be totally unable to hide in the house and WILL venture out. My marriage didn't work, but it was 10 years down the line and had nothing to do with the bag, or my attitude. Guess what. I met a wonderfully kind and understanding man (unlike the one I had) and we spent a year talking and sharing before I ever told him about the huge bag that would make him run screaming into the dessert. We've now been married for 17 years and have had an enjoyable sex life. But guess what? I'm still self-conscious. It's okay.

[Greg5056]

Thank you all for ur messages it has helped me alot. I feel so much better knowing other people have been through similiar problems I'm hoping in time it will get better. Thankyou

[To Good Health]

Hi Greg,
You've got some great messages - there is little for me to add. Keep in touch and all the best,
To Good Health

[ot dave]

I'll toss in my experience here. I was 37 at the time of my ostomy. Mine was a product of colorectal cancer, so there was no suffering prior to the ostomy. I did my cancer treatments leading up to surgery with no problems. I had been married for 13 years prior to the cancer diagnosis. We had a healthy relationship prior to the cancer and ostomy. In my experience, the ostomy didn't make us grow apart, it made us stronger. Depression and anxiety after an ostomy surgery is common, and expected. Some of us can deal with it better than others. Some need time, some need meds, some need counseling, some need all three. What ever you need, go get it. There is no shame in feeling the way you feel. Take care of your body AND your mind.
Hope you find some relief.

David

[Diane C]

Just to give you some encouragement on a Friday. Wishing you a nice wkend! Thanks for thanking us for the comments. I can attest that the folks up here are amazing. I do hope you checked out local support groups. We just had one on Sunday and it was great. We viewed the UOAA's most recent video on ostomies and commented on it. (And someone went to Costco-- I'm not a member -- and brought the most amazing bourbon chicken!) Unsure where you live but remember that we're having a regional conference in May in N. Virginia. Regional and national conferences can be wonderful ways to get good info and meet some lifelong friends. I still remember going to the one in Las Vegas (hot in August) and tho I'm older than 30+, that group welcomed me -- and I felt so comfortable with everyone. Here's to Steve Strizic whose welcoming smile helped many -- and so many others did the same, too. Unsure that Steve is reading -- he's had some health concerns but as usual, he's pulling through with unbelievable optimism.

Anyway, think up though sometimes it's very hard. Believe me, I know. I think you're fortunate not to have a rectum. Won't go into it here but wish mine had been removed. It's now causing issues and the surgeon is not encouraging about a 4th abdominal surgery due to scar tissue -- and guarantees nothing. So we're all struggling in different ways and grateful in others.

Also, if you use Facebook, search for ostomate or ostomy. There are several groups there.

Diane C

2000 MACE Procedure
2002 Colostomy

[ErbOrb]

I can empathesize. For nearly a year, I've endured this wretched ileostomy and its awful repercussions. At first, my life improved after surgery -- I gained weight and generally felt better. However, once I stopped taking TPN, the initial improvement disappeared as the weight (which must have been only phony water weight) returned to my pre-surgery level. Now I regret having the surgery and wish I had just kept my deceased intestine.

[lolapergola]

Hi Greg ,I hope you are feeling a bit more relieved now that you know we all have doubts and fears , but we cope anyway somehow .
ERBORB ,I was saddened by your post and wanted to draw your attention to the 2 alternatives Billv mentioned above
the Koch pouch and the BCIR. I know they are not available to those of us with colostomies , but you have an ileo ,and maybe they might be something worth thinking about ? there is more info on this site about them if you search for them .I didn't understand what TPN is that helped you gain weight .Are there alternatives that may help you regain weight and make you feel better ?
I am overweight and have an underactive thyroid which makes it hard to shed weight - if only they did fat transfers
Hope to hear more from you ,
take care
Lola .x