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HELP - Permanent Colostomy Need Info

cre8tingchaos
Posts: 4
Joined: Feb 2003

Hi...I have posted before in regards to my Dad and his diagnosis of rectal cancer. He finished his 6 wks of radiation and chemo and just met with the surgeon today. The surgeon told him that because the tumor was so low in the rectum he would have to take the whole thing out, leaving my dad with a permanent colostomy.

My questions....how bad will a colostomy be? Will he have to discontinue all the activities he enjoys now (fishing, hunting, swimming and playing ball with the grandkids)? Also, will he be able to enjoy all the foods he is able to eat now? And one more question...I hesitate to bring it up....but...what about sex? Also...is he going to smell becase of the bag? I know these are the questions he is asking...can anyone out there shed some light on this situation? He is scared to death and wondering if having the surgery is worth it. Just so you know...he is 54 years old and in excellent health otherwise.

If anyone can share their experiences, I would be extremely grateful. Thanks.

Karlen1
Posts: 24
Joined: Apr 2003

Hi, post your message on the following message board and you're bound to get lots of replies.

http://www.uoa.org/discussion/genboard0306/

It's a great ostomy site. The participants all have ostomies, some as a result of cancer, some for other reasons. You will get answers to all your questions, I'm sure.

I had rectal cancer but I have an ileostomy, so others can answer your questions better than I. Good luck to you and your Dad.

All the best, Karlen

Chrisswife
Posts: 50
Joined: May 2003

My husband is in the same boat as your dad, he just finished radiation/chemo and he will have surgery next month. His tumor is low in the rectum, and has also advanced through the rectum wall, as well as into the lymph nodes. He is 33.

Our surgeon is discouraged by the location of the tumor but is doing tests and follow up to determine if he is a candidate for a "colon pouch" or "J Pouch" procedure where a portion of the colon is used to recreate the rectum. Find the best colorectal surgeon that you can and get a second opinion. Our surgeon isn't giving us any guarantees, but at least he's going to try.

Best of luck - Misha

Fabso
Posts: 1
Joined: Jun 2016

I have had a major life changing episode in August of last year.

The below, I hope may be of assistance to anyone having to go for or just staring to live with a colstomy.

I went in for a routine bout of antibiotics for diverticulitus and ended up on full life support only to wake up with a colostomy bag. (Long Story)

It was extremely difficult to digest when I woke up, but as time went on, acceptance set in, I have returned to normal everyday activities , driving, walking, going out for dinners with the family, interacting with people on a daily basis , without them even being aware that I am walking around with the dreaded "poo bag".

Sex, is fairly normal as long as the method you use to secure you bag is a good one.

I , personally have founf that the paste does not work very well, it gets hard and is uncomfotable and causes leakage.

i have started using a 2 piece system which I attached with a product called Eakin, the baseplate tends to stay attached for up to two weeks, with only a bag change needed ( every 5 days or so) depends on the individual.

Before I attach the bag, i make sure the area around the stoma is clean and dry.

I then cover the area where the bag attaches with gentians violet, this prevents infection to the skin around the stoma as well as ensures grood adhesion of the base plate.

The products I use are made by coloplast ( please research for what suits you best). Not promoting any product here, you can Google different types, this is just what I found more readily available and cost effective for Me.

As far as foods are concerned, it is a trial and error excersize, gas is not a great thing with a bag as it blows up like a baloon and may leak( happened to me a few times.)

Normal activities can be resumed after you feel no pain in the scar area, well...that was my experience.

Sex, is a two way street, feel good about yourself and it will flow over to your partner..don't de-attach....Although you may need to initiate, Bit personal, but partner on top works better......

As far as smell is concerned you get a product called, Brava lubricating deodarent made by coloplast.(once again my personal choice)

The small is more evident to the wearer than to surrounding people as we become "acutely" aware in the change of our own body odour.

Also, depending on how close the stoma is to the belt are on your waist, you may find it nessecary tp start wearing pants with an elasctic waistband as a belt will cause discomfort when sitting.

Eight moths later and I am no different to any other human on this planet, it was HARD at first, but I made it part of me....not anyone else...it only becomes a burden if you see it as burden, easier said than done.

I never reealised how to true the saying "adapt or die" is until I went through this myself.

The journey was not an easy one, but look to those aroound you that you care about and who cares about you, it slowly becomes easier.

I had the one pice system before and the frequent changes caused a bad skin rash due to the frequont changing.

All in all it becomes a really personal choice.

I , hope in some small way this may help, as I need this kind of info and had to learn by trial and error ( not a great thing), I wish someone could have shared their experience with me.

Please let me know if you found this info helpfull in any way , as I would like to share it with as many people as possible.

Feel frre to ask any questions about my experience with living with a colostomy.

 

Best to You,

Fabian

 

 

Helen321's picture
Helen321
Posts: 1292
Joined: May 2012

Hi, Getting a permanent ostomy isn't terrible but not having an anus is life changing.   I was just talking to someone about this.  Without an anus, sex is a no for me, I think this just might be some people, sadly I'm one and that is a HUGE adjustment, I'm 46.  If you have a spouse, you're in a better position.  If you are dating, I have to tell you it sucks.  For whatever reason, people don't communicate this when trying to date so it's like looking for a needle in a haystack.  Men don't like to say "I can't have sex", I'm very open about it.  It's been hard finding someone because men are afraid of looking and having to say this to someone so they just dont' bother.

 You can do the normal things, fishing, sailing, hunting, playing ball.  I can't sit on hard surfaces but in my case that is woman related, not sure if this happens in some men.    I find life harder in that I feel like I have no physical support in my middle.  If you have very strong legs, I think you have a better shot at handling heavier and higher things.   I used to be wonder woman and able to lift ridiculous amounts of weight and carry things myself.  It's shocking how much the anal muscle does. 

Foods are dependent on the person. I can't have dairy or citrus, I have to keep my fiber at a semi minimum although that has improved greatly with time.  I can now have soda which I couldn't have for over a decade. I don't drink it often at all but I couldn't drink it before so that's interesting.  Some things are taken away, some are added back in.    It is definitely a very hard choice.

There are thousands of people walking around with these and you don't smell them so as far as that it's a no, however, changing this thing is HORRENDOUS!  lol  I laugh when I say that because it's like changing a baby's diaper, it's going to stink.  My poor kids are learning to be "polite" when it comes to the smell.  Once in a while you do have a blowout.  You don't if you stick to a very stable diet but sometimes I sneak extra fruit in the summer and that doesn't turn out well or I eat something I know my body can't handle like pineapple.

 It's depressing at times and then at other times, you feel okay about it.  The okay days start to outnumber the not okay days but there are times when you just feel like a total freak (again the ostomy is fine, it's the loss of the sphincter muscle that changes everything).  Men have the option of something called "the J pouch".  Women don't have that option.  I highly recommend asking if he qualifies.  I have to tell you, if you ask me now 3 years later if I'd do this surgery, I'd say hell no!  Of course, I don't have cancer anymore and I am free of the anxiety that comes with cancer.  It's easy to say that you wouldn't do something when you feel confident that you will be alive in the next few years.  If he can keep his sphincter muscle and not have cancer again, by all means he should exhaust his options.  If it means life or death and they have to take the muscle, then he'll learn to manage.  It's not a mentally great thing to have to deal with on any level. I'm at year 3 and it was quite depressing for a long time. You do deal with it but that's just what you're doing, dealing with it. I think I'm somewhere in the middle and if I wasn't dating, it wouldn't be so hard.  The ostomy itself is something I don't think much about. It was a bit of a hit to my ego "look at these abs" ego though.  Good thing I let myself get fat recently.  lol  What abs?  But anyway, he really will adjust to an ostomy.   (PS if insurance covers it, use a 2 piece system, I can't say that enough.  It's day and night from the one piece. I would never go back to a one piece and I can't figure out why people do that to themselves unless they have to due to costs.  No washing, just toss and go.  If you can irrigate, even better.)

John23's picture
John23
Posts: 2138
Joined: Jan 2007

Ostomies....

There's no "big deal" about having an Ostomy. Yes, it's somewhat of a lifestyle change, but so is getting married, having kids, changing jobs, or moving to a new location. In fact, those I just listed are considered more traumatic than the addition of a stupid Ostomy appliance to one's schedule....

The "United Ostomy Association of America" has a great website and forum. People are just like here, warm and friendly and willing to offer advice (good and bad). Make a visit there and join in.

You can click on my name and read my profile page and blog. There's some Ostomy info there that you might find helpful.

A colostomy is easier to maintain than an Ileostomy. Your dad can use an "irrigation" device to flush his system and not have to change appliances as often. The output is fairly solid (depending on the amount of resected colon that's taken place. And there's usually no "smell" involved with the wearing of an appliance. If there should be, there are products that can be used. One drop can totally eliminate the offensive odor of a full toilet facility. One partial drop into the appliance, and any concerns of any odor are gone!

There are very little (if any) restrictions to one's life with a colostomy. Chewing one's food well, is the only underscored item. But hey, didn't "mom" always tell you to chew your #$%^& food?

And sex? So? The appliance can be hidden under a shirt, if desired, or if the irrigation method is used, no appliance (or a simple "stoma cap") can be used for the duration of time of activity. It's not a big deal unless you want it to be a big deal. To tell you the truth..... his surgery to turn him into a "barbie doll" (no anus, etc) isn't going to put him in the mood anytime soon after surgery. Well..... unless he's into masochistic behavior?

If he hadn't already, he should make certain the surgeon is going to leave the sphincter muscle intact; It will make life much easier for him if it is left in.

Your questions can be addressed at the UOAA website much better than here. There are ostomates of all kinds, with all different experiences to follow.

He'll do fine. Having an Ostomy is the least of his problems, trust me.

 Be well,

John

 

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