I'm here again...new problems

and advice you will get.......I knew you couldn't leave me...
Hi Sweetie,
I would never tell anyone who is hoping for a reversal or going back to normal if its troublesome to get an ostomy. But!!! Now that you asked. Vicki, If I sincerely didn't think it would change your life I wouldn't even mention it. I have heard all of the stories good and bad about reversals and the trials and tribulations that they go through. Some, to this day are still fighting with reversals simply not to have a bag. If I was 20-30 maybe it might be an issue but im not, I am 55 and my sex life is the only thing that it even starts to get in the way with. I have a wrap that has an opening in it that my pouch goes into and the outside flap of the wrap covers and keeps the pouch in place. It simply keeps the pouch from getting knocked off. The pouch is very accomodating. It is very easily hidden, it is normally changed out completely every other day or so. I do it in my shower. It has become part of my everyday life and I don't worry about chitting in my pants or shirt pocket. I have informed everyone I know about it so that if I happen to "fart" out in public then they are not flabbergasted, they go on as nothing ever happened. I really honestly wouldn't tell you to get one if I didn't think for a minute you will be completely tickled to death with the freedom its going to give you...Its ultimate freedom to go and do whatever you want. Lets face it sweetie, Im never going to be a Chippendale and you won't be pole dancing anytime soon (I don't think) so an ostomy for you and for what freedom it will give you back is to me a dream come true for you. If you pm me your address I will send you a few of the appliances I use so you can put it on just to see what type of things you have to watch for, take a magic marker (just like they do for real) and make a dot on your abdomen about 3 1/2" above your waistline on your left side (same as mine) that is about where the ostomy will come out at I think..You could ask your Dr to show you where but that spot is where they brought it out of me at in the sigmoid area...and the good thing about it, the trial runs don't make ya stink if you make a mistake.....Love ya girl and if you need anything else at all feel free to pm call or holler in here for me. Im always just around the corner. We went through this together as a team, I figure you will be very happy with this decision......I need to know how and what will be done to accomplish this for you. It depends on how they go about it and whether it will be laproscopically done or otherwise...Just lemme know and I will be with ya every step of the way. I really think for you its the right decision....{{{{{{{{{hugs}}}}}}}}}}}}}.......Clift

Patteee said:

Ya know buzzy- I really
Ya know buzzy- I really appreciate your posts. You are so kind, so down to earth and you just make the very best of any situation and that is so so cool. Thank you

And Vicki- having had a temporary colostomy, I will stand here with others and tell you it is not the best thing in the world to have, but it definitely is not the worse. When I was in for the takedown, my roommate was in for the initial colostomy- she like you had been homebound due to colotis for years- a new doctor in her small town of Missouri convinced her to travel to Mayo and have a colostomy. She was so excited, just thrilled with the chance of having her life back! One of the first questions she asked me is why I was having it reversed? My only response at the time was, because I can. But the question kinda threw me, indeed just exactly why was I having it reversed? To be normal again? But really, the normal part was just a mind thing, cause I definitely felt and looked very normal, I just tolieted differently. For me it was reclaiming my life again- cancer robbed me of precious time and took a huge chunk of me- the reversal put me back in the driver's seat and gave me back my life. I want to encourage you to view your future colostomy as doing just that- viewing what cancer took from you and continues to take from you by forcing you homebound. That the colostomy means that you, Vicki, are back in control of your life, not the cancer, but YOU.

Patteee
I had a very dear friend (girl) that passed away last year from brain cancer...She always called me buzzy.....Thank you, you brought back some very pleasant memories for me and a tear to boot...Feels good to think about her, and others I care about in here....Clift

Oh, dear
Vicki,

I'm so sorry about this. Sounds like you've been having a horrible time! I hope you can go ahead and get the colostomy and have a life where you can go out and do things again.

*hugs*
Gail

Shayenne said:

Awww....
....I'm, so sorry to hear about your problems Vicki, I though things were going better for you. I have a temporary colostomy, and am actually scared to have a reversal, I may just end up keeping the bag, it's not so bad, you get used to it, and it actually does have it's advantages, not worrying about stopping somewhere to go, it's gotten too convenient for me.

I miss swimming though, and wearing certain types of clothes, where I have to hide it, I wear shirts bigger then my usual size, so no one sees or the bump, or it's not hanging out at the end of the shirt. I'm also getting faster putting it on! I don't shower with it on, I like it to be nice and clean all over, and then put a fresh bag on. I don't or really have never made a big deal about having one, it saved my life, though it sure is a huge incision, and take it easy the first weeks of having it, it's a painful incision, especially since I used a wound vac, and when they changed the dressing, it sure wasn't fun, I was in tears each time they took the sponges out, but it gets better.

Let me know if I can do anything to help, I hope everything is ok, and we're here for you!

Hugsssss!
~Donna

No swimming?
Why no swimming. My mom recently dx Stage IV, colostomy not an option for her. However, my dad got a colostomy 7 years ago and swims all the time. Just wondering if this is a personal thing for you or if dr told no swimming. Just being a little nosy I guess.\
Janet

Colostomy
Hi Vicki! I'm so sorry about the stenosis. I was hoping your last dilation would solve the problem, but after being dilated four times myself, it seems these closures are more stubborn than we want to believe.

I don't want to get your hopes up without concrete evidence in my hand, but finding a way to heal myself completely with diet has become an obsession for me. I recently emailed David Wolfe for his recommendations on how i can get my body to reabsorb the stricture. Put a question out there, and answers will come! Many of my friend's co-worker's have already made a suggestion that could help. I want you to research it. It's called MSM, and it supposedly shrinks scar tissue. I don't know the recommend amount, or anything else about it yet since i just put this question out there yesterday. I just came off a six day cleanse yesterday, and i'm very worried about how my bowel movements are going to be with solid food again. They were feeling strictured the last time. During the cleanse, the bowel movements were nothing but mucoid plaque and gastric juices which was not painful, or strictured in any way.

I definitely understand where you are. Three weeks ago i was more than ready to get another ostomy after suffering for months with the stricture. Things are different now, which is why i'm so convinced there is another way.

I have a comment about swimming with an ostomy. I don't know if Donna has an ileostomy, or a colostomy. I had an ileostomy, and i also hated to swim with it. Unfortunately swimming is my favorite thing to do, and it made swimming hell. It would threaten to come off in the water (one time it did, and it was horrific), and you can't really wear a bathing suit with an ileostomy, so you could see the bag under my shorts. Colostomies can sometimes remove the bag completely, and use a wrap, or belt to swim. Ileostomies are watery and you can't control, or even notice sometimes, when you're having a movement.

Anyway, those are my two cents!

Much love and many hugs,
Krista

VickiCO said:

Thanks Krista
Unfortunately my problems aren't exactly related to food...except for the fact that food causes poo...and you know the rest! My issues are the colon itself is so damaged that it just won't heal and do the proper job. There isn't any rectal tissue left to try again, therefore the colostomy. It's not scar tissue - it's radiation burns. I am really OK with my decision. It will be one more step toward a new normal. Bottom line is, the radiation saved my life, even if it left a few problems behind (pun intended!)

As for swimming - I am with Donna. My daughter's in-laws have a pool, and they invited me to use it privately when no one else is there. But I just can't imagine what would happen if I had a diarrhea attack while swimming in their pool! I never know when it hits, and it's instantaneous, no warning. I have about 30 seconds to get to a bathroom. I feel the same about swimming with the colostomy, but we'll have to see once I've gone down that road.

Now to wait a month to see the surgeon, and we'll get on with life!

Vicki

sorry you are going thru this
Vicki

I had to post when I seen you were having problems, I wish you didnt have to wait so long for surgery but I guess your Dr knows best, I really don,t have any advice, I can only say you can do it, you already know that though, I will be thinking about you sending you good vibes and prayers, if it helps you to know it is ok to get the colostomy wet
I work in a nursing home and have given peple a whirlpool bath with one on and I havent seen one fall off yet from getting wet, as far as wearing a swimsuit with the right 2 piece nobody will even know it is there unless you forget to burp it, anyways good luck and take care

Sheri22