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Petrified of colostomy bag

GoLilly
Posts: 3
Joined: Oct 2011

I am having a very hard time accepting the reality of having my butt moved to my belly. I will be having the surgery later this mo. I had chemo and radiation earlier in the year but the cancer returned. I am nervous about the results from the MRI and PET scan which will bone in the next couple of weeks. Besides that my mother died 4 days ago so I'm a bit overwhelmed. I'm trying to keep my sense of humor-already named my new butt Teresita-but could use some support from kindrid spirits. Is life really ok after a colostomy?

Phoebesnow
Posts: 447
Joined: Apr 2011

You have a lot going on right now. I am sorry for the loss of your mother. I hope you have other family to lean on during this difficult time.

Have you consulted any other doctor for another opinion regarding your treatment? I hope you have good results on your tests. There are others here and on the colon rectal boards who have an ostomy. My husband has one and he is very active, diving, mountain biking, swimming
Traveling. You will be ok. There are ostomy nurses who will show you how to work it. We will be here to support you. I am glad you found us.

GoLilly
Posts: 3
Joined: Oct 2011

Thanks fornyour support. I'm glad I found you guys.

z's picture
z
Posts: 1250
Joined: May 2009

So sorry for what your going through with the passing of your mom. I am going to bump up a post with a survivor who is having treatment other that the colostomy which was recommended to her. She has had a recurrence also and her drs have a different treatment plan and not colostomy. Of course, I don't know your circumstances but wanted you to see the post. Also, there are anal cancer survivors who have adjusted well to the colostomy and are able to do anything they want. I wish you well. Lori

Brachytherapy by pjs62, I bumped it up, please read.

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

Please accept my condolences for the recent loss of your mother. I'm so very sorry. You certainly are dealing with a lot right now. I do not have a colostomy, but have communicated with several people who do and are living pretty normal lives. I understand how acceptance can be very difficult, but from what others have reported, once that happens, life is not much different than prior to surgery. However, I hope you will do as Lori has suggested and take a look at pjs62's story. Her treatment does not involve having an ostomy. However, we all must keep in mind that her doctors are thinking out of the box, if you will, and that the standard treatment for recurrence is still APR. I hope that whatever treatment you and your docs decide on will be successful, and if you do undergo surgery, that your recovery will be swift and complete. Please keep us posted.

GoLilly
Posts: 3
Joined: Oct 2011

I will be speaking to my doctor about alternative treatment though both my drs in ny and fla. think the cancer is very aggressive and I can't take a chance w anything else. Glad to find the board cause family sometimes is not the best soundboard.

Lorikat's picture
Lorikat
Posts: 551
Joined: Jul 2011

While at MD Anderson I talked to not only people who have the colostomy bag but to spouses of these people. (while the colostomy patient was in for treatment). The SPOUSE said it really was no big deal after the learning curve which was a couple of weeks. So from both patient and spouse I was reassured....I hope not to have one but will know for sure in January. Deep breaths, Lorie

eihtak
Posts: 809
Joined: Oct 2011

Hi I'm new to this site but just posted to someone else about my colostomy. I was diagnosed with Anal Cancer Stage3 in Jan. 2011. I got my colostomy right away and also began chemo and radiation. It took a little getting used to but in time and with helpful suggestions from others on line I did figure it out. Much of the time it prooved to be helpful. I had pain in that area and horrible radiation burns so was much more comfortable to not have to have a bowel movement that old way. There are different brands of supplies and some work better on different people, and that is the hard part, to try different things and see what works best for you. My bag lays flat and when I go I try to empty it soon as possible. Its a little hard to tuck shirts in so I just wear looser longish tops but its been not too bad that way. Most areas have a stoma nurse that can help you over this hill to figure out what works for you, but I found a lot of help just searching on line. I hope to hear "cancer free" and then have mine reconnected but sometimes it has to be permanent because of dammage to the anal area, I am preparing for that myself and in the whole scheme of things its not so bad. For me, I feel like my family and friends try but just dont really understand what I have to deal with every day ( just little things like carrying supplies to clean or empty bag, privacy and more time in bathroom, ect. ) guess they really never will know what its like!!! I try to touch base with support groups on line or talk to someone at the doc office and always feel better. Don't fret about this its just not really that bad, you will need a little time but will figure it out too! Good luck....keep in touch

pjs62
Posts: 95
Joined: Sep 2011

GoLily,
First...I'm so sorry to hear of your mother passing. I understand how things can feel overwelming...just please take time for you to heal.
As a few others have said, my cancer is also recurrent. The drs who treated me last year (with the traditional chemo/radiation) said the only option is APR (remove some colon, rectum, then permanent ostomy). I couldn't 'wrap my brain' around this & felt there had to be another option. I did alot of research online, asked many questions, talked with a few here on this board. I chose drs at Goshen Cancer Center (in Indiana about an hr from home)for my 2nd opinion.(my new surgical dr practiced at MD Anderson) Everyone there is very caring, supportive, take the time to hear your concerns & answer your questions.
They are 'going outside the box' but will be doing laser surgery to remove the tumor & surounding tissue, then 6 days of brachytherapy. This type of treatment was used on cervical cancer with success. And they feel confident in it working but will also be keeping a close eye on me to be sure the cancer stays away!
Please let me know if you have any questions. I'm fairly new to this board site but find everyone very supportive. Take care...blessings & hugs.

BTW...my hubby calls my 'bottom' my 'pooter-scooter'!! (even my grandkids say "mamaw's pooter-scooter is broke!"!!) Hope this helped ya smile!! heehee

Ann_i_
Posts: 47
Joined: Oct 2011

I was diagnosed in Jan 2011 and had the port and ostomy done before leaving the hospital and then went into chemo and radiation treatments.

I finished treatments in April, and am still awaiting an 'all clear' so that the ostomy can be reversed. (Though it isn't a given that it will be.)

Although it can take a little time to adjust, I'm now at a point were I actually can forget it is there and that I have one. (Mine is high on my chest, located below my right breast.)

Last night I was going to a 'Pizza Hut Night' for my daughters band and the t-shirt I was wearing wasn't the longest and it kept riding up a bit and the ostomy bag would peek out of the bottom. I went in my 17 year old son's room and said, "Does this look OK? Should I change my shirt?"

He said: "Why? Does it bother you? If so, you can, but if it doesn't, why bother?"

I didn't bother changing it.

:)

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

I am just a few months post treatment and do not have colostomy. Like you, the thought of it is just awful. However, I just wanted to pass this on to you. My 80 year old father was encouraging me in case I ever did have to have a colostomy. (He is the best dad, and even at 80, he still loves me and encourages me tremendously) He told me that he ran into an old friend of his. In their conversation, it came out that this friend has had a colostomy for 45 years! He doesn't have any problems with it - lives life without it interfering whatsoever. He said that once you mentally accept it and go through the learning curve, it isn't an issue at all! If a 75+ year old man can deal with it for more than half his life, I would like to think any of us could too!

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

I'm so sorry you're having to deal with all this. So sorry about your mom. From the previous posts, it seems like a colostomy doesn't need to be all we fear it will be. I know the thought of it scares the heck out of me too. When I first went to see my radiologist he told me that one of the doctors had one and you'd never know it. Gee, I hope things get better for you. Take care.

Dee2005
Posts: 24
Joined: Oct 2011

I'm so sorry about your mom! I've had 2 colostomies. The second one is permanent, so I will have one the rest of my life. I live in a rural area and did not have the benefit of an ostomy nurse so if you do take advantage of them. My first colostomy was absolutely horrifying! I felt like I had an alien attached to me, because it would crap or fart whenever it wanted. Embarrassing! I kind of became a hermit. But my higher power has a sense of humor. With my permanent colostomy I decided to return to college and was extremely nervous about it farting or something in a quiet classroom full of other people. Then during break one of the first days of classes I was conversating with another student and heard this really LOUD fart! I was horrified, my worst nightmare had come true! Then the other student said OOPS and I realized it was her that had farted not me! Oh boy did I laugh! So now if my colostomy gets rude I'll simply say OOPS like a normal person. Be prepared for emergencies (carry extra "gear") everywhere you go and ALWAYS have air freshner. Your colostomy will have a mind of its own, you will not be able to hold your movements or gas. Sometimes it will blow up like a balloon and you will have to burp it. Just carry on like normal and keep it clean. I have found that drainable pouches are the best that way you can simply empty without any major drama. I've had a few skin infections so be sure to clean around your ostomy when you change your barrier. Hint make sure your skin is dry before putting on your new barrier this allows it to adhere to you better and reduces the chance of yeast growing on your skin. Hopefully yours will be temporary. But if not it really isn't a big deal once you get use to your new friend. I haven't named mine but that sounds like a good idea after all she'll be with me for the rest of my life. Just remember air freshener because you are in for some of the worst smells ever! It doesn't smell like a normal bowel movement it is like 100 times more rank! Lots of luck!

Ann_i_
Posts: 47
Joined: Oct 2011

Just a few notes to hopefully ease the way.

I don't mean to contradict anyone, but, I never found the need to carry or use air fresheners.

Most of what I do with my ostomy takes place in the bathroom. (Though, as time moves on, shoot, I'll burp the darn thing just about anywhere. As long as I can maintain my modesty, I ain't flashing no one my breasts but my hubby. And since my ostomy is high, that's what would happen.)

Anywho, yeah, it can smell, but if it is reaching your nose and you aren't doing anything with it (say, like cleaning or burping it) then you've got a leaky seal and need to think about taking it back down to skin and redoing it.

You should smell NOTHING unless you are actually in the process of cleaning and maintaining it. (In the beginning, this can be very helpful to let you know when a change might be coming earlier than you thought it would.) Meaning you need to change it out soon. (Like if you can smell it, change it out.) Although this might be mental and not physical at first, I kept thinking EVERYONE could tell, and smell me. It took me weeks of asking my hubby and kids if they could smell me before I finally accepted that they really couldn't. (And I'd tell them, tell me the truth because if I go out in public and I smell, I'm going to be ticked at you!!)

I never used the liquid deodorant thing that is optional to add to the bag, the only time you can smell it is when cleaning or burping and really, it isn't really any worse then going to the bathroom use to be. (Aside from it is way closer to your nose then it ever was before, due to the direction the bag is facing as you clean and maintain.) OK, maybe a bit worse, because seriously, who has ever been THAT close to it? (Baby diapers aside. And that's a whole other smell.)

The hard part is the beginning, getting use to it, cleaning it, adjusting to your stoma size and shape and the direction your stoma opening faces. Finding a comfortable position to relax in (Yeah, you can eventually relax) while changing it out. (I found laying on a towel the best bet due to my body at times with all the movement deciding that me laying down was the perfect time to release waste.) Nothing like starting over when you haven't even finished yet. lol

For cleaning it, I've never had a skin infection or anything. (I do however have an allergy to adhesives and psoriasis to boot, so I have a bit of a problem with mine staying stuck to my skin. The adhesives cause a blistering reaction, my psoriasis rears its head and skin cells multiple under the wafer and suddenly it's not fully seated against my skin anymore so out comes the surgical tape to help maintain the seal to prolong the wafer to its normal almost a week life.) I use a squirt bottle filled with warm water and a wet wash cloth, and a mild disinfectant soap and dry thoroughly.

I put a towel over top of my fuzzy comfortable bath mat and all my supplies on the lip of the tub, an extra large towel under my head, one wet washrag and one dry one at my waist, and I'm ready to start the application process of the change.

I lay there for about 5 or 10 minutes, rise, check the seal with a mirror so I can see all the way around the wafer (apply the surgical tape, nothing like getting a jump on 'my' problem.) and dress and off I go.

Dee2005
Posts: 24
Joined: Oct 2011

No contradictions. Just different experiences. I didn't have the benefit of an ostomy nurse. Just given the surgery and shown once how to apply the barrier. I've heard of people being able to swim, exercise, and bathe. I can't do these things because my barrier will fall off from the water. I could really benefit from a colostomy class. Good luck with yours.

Ann_i_
Posts: 47
Joined: Oct 2011

I had a home nurse come out twice (and she didn't have experience with a colostomy.)

I watched two videos in the hospital. (Everything I've learned, I learned the hard way.) :(

They did tell me I could go to a class, but the nearest support system for ostomy's near me is over 45 minutes away and at the time, I was in no condition to travel that distance to learn anything.

I hadn't really thought about it since, but the problems I had with mine probably wouldn't be helped from going to a class or from a support system. (I don't really feel that I need a colostomy support group at this time. If it becomes permanent then maybe.)

I shower, don't think I could take a bath either. (Though it must be possible?) And swimming... (I have a hernia behind mine, so physical activity isn't big on my list, though I have no clue what I should or shouldn't be doing to help avoid making it worse.) Would be nice to know. lol

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