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Pro/cons of colostomy bag?

foods55's picture
foods55
Posts: 37
Joined: Jul 2011

 

Not new to CSN but joining but the wonderful people on the colonrectal board! 

History

Diagnosed with Endometrial Adenocarcinoma  (Uterine Cancer) Stage 3A, Grade-2  December/2009

Hysterectomy,Chemo- Taxol/Caroplatin and 26 treatments of radiation and 2 internal Brachy therapy

Started Chemo March/ 2011 & Radiation August/2011 Finished treatment October/2011

Been in remission NED for 2 years- Retired early from teaching,great support from family and friends

Diagnosed with Colonrectal Cancer T-3 -N 1 Suspicious lymph node on 10/10/2014

Met with surgeon 10/16/2014

Have appointments with Radiologist and Oncologist on 10/24/2014

Surgeon said my surgergy will be on the more difficult side because where the tumor is located, lot of scar tissue, and close to the vagina which she is worried about nerve damage and the amount of radiation I have already had.  She is recomending the colostomy bag but I'll have to make the final decision after Chemo which I hope starts in the next 2 weeks after I meet the two  doctors 10/24/2014.  I may not be able to get any more radiation treatments depending what my radiologist says on Friday.  I would like to hear from anybody that ended up with a colostmy bag or any insight that can help me deal with the fear,anxiety, frustration,and just dealing with the emotions of being diagnosed with a new primary cancer.  Looking forward to hearing from you soon!

Sue

danker
Posts: 1271
Joined: Apr 2012

I had an ileostomy bag for about 3 months.  Horrorable at first,but when I got used to it, Not enjoyable but tolerable.  a friend had a colostomy bag for many years having no trouble.  Good luck to you!!!

harleywiz's picture
harleywiz
Posts: 51
Joined: Aug 2014

I had two tumors removed from colon and retum and i have a perament bag i love it i can poop anywhere any time i want (in fact im pooping now) lol im thinking of getting one on the other side for urin, i had no choice with mine im stuck for life with it its no big deal i have had it come off when sleeping (fills with air roll over and it pops off) i have had it blow out the side and run liquid down my side or make fart noises in plubic that you have no controll over then theres the time the bag filled to the top while i was out and had no spear with me so that is the bad things that you learn to live with now the fun things locking the windows in the car and burping the bag see if i can make the wife sick burping the bag in bed in the middle of the night or walking around the house with no bag so the wife as to look at my stoma  (shes a nurse nothing bothers her but me) everyone told me how bad it would be and im fine with it and i save a fortune on toilt paper...stoma pictures avail on request

Helen321's picture
Helen321
Posts: 1424
Joined: May 2012

lol Harley, you make it sound so glamorous.

Akroger's picture
Akroger
Posts: 88
Joined: Mar 2013

Hi Sue. My mom was unable to have surgery, but the location and nature of her tumor made life so miserable for her that her oncologist recommended she get a colostomy to prevent the irritation of her tumor by natural digestive function which was causing all kinds of problems. She got the colostomy in April 2013, and she is almost a different person from who she was in the first few months following her cancer diagnosis. She was in such excruciating pain all the time, constantly running to the bathroom, barely able to function at all - the one fortunate thing was that she didn't work outside the home, because she was bedridden with the weakness and constant pain. After getting the colostomy, the pain level fell dramatically, but obviously there was an emotional struggle in dealing with the new way of things, especially since hers was permanent. She's always been a clean-freak, so it took a long time for her to not only accept, but also to find the right system that worked for her, there are lots of colostomy bag options, and she's also had to be careful about the clothes that she wears so that the bump from the bag isn't visible. But every minute of that adjustment was worth it. She still has bad days, but that is from the chemo, and was to be expected either way. She is more active, lively and enthusiastic about life than I've seen her in over 2 years (she was diagnosed in January 2013, but suffered pretty terribly in the months before too). I definitely recommend you go for it, it's been a godsend for my mom.

Helen321's picture
Helen321
Posts: 1424
Joined: May 2012

Hi Sue  I'm 44 and I've had mine for 18 months, mine is permanent.  Pros: You don't have to worry about going to the bathroom very much.  You never have to worry about going in a car on a long trip.  Pain from gas is so rare for me these days although I had some in the beginning I haven't had much in the last year at all (at least for me).  You can swim with it as long as you tape it up with waterproof tape.  You can pretty much do anything you used to do with very few exceptions, I don't change in front of strangers in the women's locker room anymore, don't want to freak people out.  

Cons:  You don't get to enjoy going to the bathroom after a great meal although you still get the good sensation from gas.  It sometimes makes noise in public places although mine seems to do it less as time has moved on.  I don't know your age or if you will keep your anus but if you don't get to keep the anus, you have to discuss vaginal opening and sexual function (I wish I had known this).  Without the muscle, the body is seriously altered and so is the opening of the vagina, sex just isn't what it used to be at all physically.  You'll have leaks a few times a year (ALWAYS carry a spare, no matter what, learned that the hard way).  You'll go through quite a few bag systems before you find the right fit for you and that is a pain in the neck. It took 6 or 7 months to finally be happy with one.  I don't know how people deal with the one piece plastic system, I found those awful, the one I use doesn't blow up with air and is a peel and stick so I can wear fitted clothes as long as I take bathroom breaks to check the bag.  Just peel, clean with baby wipes, restick and go (they're also more expensive, thankfully my insurance pays for it).  You have to eat a low(er) fiber diet or your will have runny poop all the time which doesn't work well with the bag.  I'm to the point where I eat more bread, it just works better for me and even though I didn't like it, I had to get over it if I wanted to be able to eat fruits and veggies.  There are now some I just can not eat, melon, pineapple and no milk for me at all except in yogurt.  A glass of milk goes right through me now.  Getting back to some kind of normal with exercise is killer as you have no core at all and no lower muscle if you've had the anus removed.  I used to lift heavy objects and now I'm a weakling and have to ask for help.  The worst part of the whole thing is the depression.  It took me three months to get over the depression.  The first week I hated having this on my skin.  I tried to sleep without it.  Sleep was an adjustment until I found this two piece system.  I moaped on the couch like my life was over.  Now I laugh at myself, my life didn't end, it's just different.  Also I'm getting divorced so dating is going to be interesting, I have no idea how to explain this to someone.  Colonoscopies are crazy.  I didn't know there was a special bag to do the cleanout and so I stood in the shower for 3 hours spewing like something out of a bad sci-fi movie.  I'll have the long bag that stretches into the toilet ready for the next one.  Knowing your bag options/accessories really makes life easier.  You really have to take care of your skin or it can be very itchy and painful. Now I rarely have skin issues but in the beginning it took me a while to get the hang of it.

All in all though if the choice is staying alive or dying, this bag wins by a landslide.  Most days I forget I have it.  90% of the time I'm fine and don't even think about it.  It's not who I am, it's just a part of bodily function.  I'm completely used to it at this point.

If you decide to go for it, make sure you bring several pairs of pants for the marking and be pushy about where you get marked.  Your ostomy should fall below your beltline.  The nurse that marked me stinks at her job.  I can't wear half of my clothes and the ones I can wear, the bag sticks up so I've had to buy some longer shirts.  Ask about how exactly your body will be altered and how this will effect you vaginally (especially if anus removed is happening).

There is a woman I met on Facebook that has beat and been cured of three different cancers.  I don't remember which three so I'll have to look in our emails.  She told me a few years ago.  She's doing just fine so keep the faith and know that there are plenty of people who have beat multiple cancers who are doing fine in life.

GaMeof5
Posts: 5
Joined: Feb 2013

Sue,

I am not a colonrectal survivor but do have some information on osotomy bags due to my mother-in-law.  (My mother-in-low was one of the most vain people I have every met.  Her clothing, hair, make-up, etc. were always perfect.)  In 2004 she was diagnosed with colon cancer while in the hospital for an intestinal blockage, and her only hope was to have her colon removed and receive an ileostomy bag after the surgery.  Her first response was that she would rather die than be a "bag lady" and she remained in the hospital for a few days as she got sicker and sicker.  Eventually, she did agree to the surgery when she finally realized she really was going to die from this.  Post surgery she stayed in the hospital for about 5 days and then was released.  While there she did look at her stoma, which was an emotionally moment but refused to care for it.  I had agreed to stay with her and my father-in-law for 4 weeks after she got home.  A stoma nurse at the hospital worked with me learning how to care for her new "friend".  My mother-in-law wanted nothing to do with the helping.  Once she was home a WONDERFUL stoma nurse came to their home, I think it was everyday.  She insisted that my mother-in-law at least watch what we were doing and eventually she did.  About 2 weeks after her discharge the nurse wanted to speak privately with mom, so I left the room about an 15 minutes later I was asked back in along with my father-in-law.  (She didn't want him to see her with the bag so had kept him out of the room whenever we were working with it or when she was showering.)  Mom told us, she'd obviously been crying, that she had to learn to do this as I couldn't be expected to stay with them forever and that Dad was going to eventually have to help her out if she had a problem.  Long story, but here's the short version of the ending...Mom changed her bag that day.  Learned to care for it and let Dad help her in the shower and watch her change the bag so he know how if she had problems.  A day or two before I left to go home (I leave 4 hours away) we went on line and found her panties that held her bag close to her body so that in tight fitting clothes no one could even see her bag.  We also found lingerie made for ostomy patients so she could feel "sexy and desirable".  About 6 months after her surgery she was at a 50th anniversary party for a family member, looking great, dancing and having a great time!  That's not to say that she didn't have to learn what foods to eat and what not to, how to release gas from her bag and tried quiet a few different bags (there are LOTS out there) until she found the perfect fit for her.  I hope this helps, it's a tough thing to go through but after watching her experience, I would do it rather than risk losing my life. 

(In May 2012 I was diagnosed with Squamous Cell of unknown primary, statge IV, treated as if I was a cervical cancer patient.  I have been NED since Feb '13!  As I received 30 rounds of radiation to the pelvic area and lots of chemo, I have post-treatment issues both vaginally and lots of bowel issues so I check other discussion boards where similar issues are discussed.)

Helen321's picture
Helen321
Posts: 1424
Joined: May 2012

Sounds like we all go through the same process.  I hated mine so much when I first got it.  My "breaking point" was when I went out to dinner for the first time after surgery and realized, well look at that, I still have a life!  lol  Now I laugh at myself.  It really is an adjustment but the adjustment does happen.

Lovekitties's picture
Lovekitties
Posts: 3355
Joined: Jan 2010

Like everything with this disease, having an ostomy is a learning experience.  I have had a perm colostomy for over 4 years.  I find that living life as I wish is not impacted by it.  I do caution you that you should not do heavy lifting with an ostomy, as it can cause it to herniate.

 

I recommend the following book:

The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies

Barbara Dorr Mullen and Kerry Anne McGinn RN BSN OCN

It was recommended by my ostomy nurse. It is an excellent source for the person just starting out. It was written by a mother who has an ostomy and her daughter who is an ostomy nurse. You may find it at your library, but definitely on Amazon or perhaps at the local book store.

When you meet with the radiologist, please ask about after effects of radiation to this area.  Some here have reported considerable issues with hip and pelvic bones due to the radiation.

Wishing you the best outcome no matter which treatment you opt for.

Marie who loves kitties

Barbara Dorr Mullen (Author)

 

Akroger's picture
Akroger
Posts: 88
Joined: Mar 2013

I got the Ostomy Book that Marie Who Loves Kitties mentions for my mom. I think it ended up being more useful for me than for her, because ability to concentrate has been strongly affected by her chemo. I'd be happy to share/send it if you're interested, Sue.

coloCan
Posts: 1956
Joined: Oct 2009

that's all i need to say(reborn 9/2/09 with a permanently rerouted solid-waste disposal system))

UncleBuddy
Posts: 1019
Joined: Aug 2013

My brother had Non Hodgkins Lymphoma in 2000 and was in remission for over 10 years. In 2011 he was diagnosed with rectal cancer stage 2a which ended up turning into stage 4 with mets to the liver and lungs. He is intellectually disabled, so he couldn't handle his temporary ileostomy. Thank God the surgeon was able to reverse it. His bowels have never been the same since his lower anterior resection. Solid bowel movements are a thing of the past.

I think attitude will make or break you. If you go into this accepting what needs to be done for you to live, I think it will be easier to deal with it. Good luck!

Lin

foods55's picture
foods55
Posts: 37
Joined: Jul 2011

 

I'm so thankful for all of you responding to my post and your own experience with ostomy bags.

 

Marie, I appreciate you recommending The Ostomy Book and I have order it on line.  Also, Akroger that was very thoughtful of you for lending me the book. 

 

I would have responded sooner but I was waiting until I saw my radiation oncologist.  He said  I could get one or two more treatments but it would probably do me more damage then good.

 

Also, I saw my oncologist yesterday and I will be getting a port tomorrow and my first treatment of Oxaliplatin & Capecitabine will start  Monday, Novemebr 10th .

Thanks again,

Sue

 

Scarlit
Posts: 1
Joined: Jul 2010

I know what you are feeling, I have had a colostomy now for almost 5 years. It's not fun......... but you will get used to it. You need to find the right products by trial and error, you can go to websites such as convetec (what I use) and coloplast and many others and they will send you free samples. Remember to try them when you are not going  out. I have had some issues with the colostomy, however, I pretty much do everything including swimming. They make a water proof tape, just remember not to stay in the water too long, and to keep checking on things, The up side is you never have to rush to find a bathroom,. Trust ne you will get used to it,. Good Luck......... 

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