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I'm a newbie here, I just found out my anal cancer is back...

Shannonlw7's picture
Shannonlw7
Posts: 27
Joined: May 2009

Well, to let you know a little about me, I am a 35 year old mother of three. I was diagnosed in 2008, and went through radiation and chemo. But, found out last week that my cancer is back. So, they want me to go through the surgery and have the colostomy bag. And they also think that it may be a life-long thing because my area to be removed is soo large. Needless to say, I am scared, worried, sleepless, concerned and angry right now. My boyfriend is very loving and always assures me that it will not affect the way he feels about me, and that we will get through this. I just don't know how I am going to be able to deal with it. So, if anyone can give me any suggestions or help, I would really love to hear from you. Because right now, I am driving myself nuts! Thanx

ldot123's picture
ldot123
Posts: 276
Joined: Apr 2008

Hi there,

I did not have anal cancer but cc in the ascending colon. I am thinking about you and sending out positive vibes. Your boyfriend sounds great. Let us know how you are doing.

Cheers,
Lance

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

And welcome to the board! I had gotten a perforated colon last month, which led me to have a temporary bag on for 6 months, then I can get it reversed, but I don't think having the bag is as bad as one may think it. It's just another daily part of my routine that I do when I get out of the shower, I mean, it could be a pain when you have diarrhea and have to drain it every 15 minutes, but it's tolerable. I been hearing alot of reversal stories and the pain everyone goes through, that I may just keep it.

My husband was great with it, I didn't understand how to change it, even with the ostomy nurse showing me, because laying in a hospital bed with a bunch of meds being pumped through you wasn't exactly the best way to learn, so it was my husband who was helping me with changing the bag, and helping me with in the bathroomm, he was my hero, and still is, and doesn't love me any less with a colostomy, I was so scared, but don't worry, he may jump in and help you just as my hubby did, it was very surprising, a little embarrassing for me, but my husbands thing was "it's just poop! big deal! lol" I now change then all on my own without his help, since I been stronger since surgery, and am actually getting faster at it :)

You'll both get through it together :)

Hugssss!
~Donna

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I'm very sorry to hear about this news for you. I am a 5 year living with Stage IV colon cancer 51 yr old guy. I think if you did not have those feelings that you have now I'd wonder why not. Having been through this once before, I imagine you know how important it is to have a good team around you. That means surgically, emotionally, and physically. This site is very good for getting positive support from us all, and there are usually people who have a similar Dx so that can be helpful. You're boyfriend sounds like a good guy and he loves YOU and will give you support that you need. I see a therapist to help me deal with all of this and I would not rule that out if I were you. Everyone has their own feelings about that and it's your decision of course. Also, I would not rule out meds to help you cope (depression, anxiety, etc) or better yet, if you can find another way to deal with it it's probably better. I tend to medicate instead of meditate but as my excuse, I've been at it 5 years with no real break to peak of. But I live a good life and enjoy it most of the time.
Sorry it came back for you but hopefully this site will be of some help.
Please keep us posted and we're here if you need us.
Be well,
-p

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

Your head is spinning with thoughts, questions, emotions, reactions, etc., try and take a deep breath to relax for a moment.

I can only assume you are talking about dealing with permament ostomy. If that is the case, I can understand your concerns and frustrations. I had one for about 7 months and yet, it did take awhile to get used too.

My husband was the one that really paid attention to the ostomoy nurse on how to change, clean and what supplies to purchase, but once I got home and watched him a few times, I got the hang of it, but he insisted to continue the maintenance.

I had to purchase new paints and few shirts because of the location of mine. Left side, sigmond colon area.

There will be times of embrassing moments, like I was shopping with hubby and my bag came loose and the smell was not good. Passing gas in public (you have no control). Changing the bag at work, I had to use our nurse's facility and not regular restrooms because it is considered a Bio-Hazard.

But there is a light at the end of the tunnel. You will get used it, it does become part of you and it is better than the alternative.

I wish you luck and will pray for you daily. Please keep us posted on how you doing.

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I am very sorry to here your cancer is back.I had my surgery last july,08,I started as a stage 3,and it shrunk to a stage 1 after chemo,and radiation.The surgery lasted several hours,and I did end up needing 3 pints of blood,but I banked some ahead of time.Your dr. can advise you on that.I have a permananant colostomy bag,and it is no big deal,you get used to it,and some times it's kind of convenient.It is a big help if you can find a colosomy nurse before the surgery to advise you.The nurse came by just before the surgery,in the pre- op room,and it helped alot.The only problem I had after surgery was eating,I lost 60lbs.It took awhile to get my appetite back,just stay calm,and you will be ok.I lost a brother to cancer jan.08,mine was found in feb.08,I just hope the worst thing that happen's is a colostomy bag.I wish you the very best of luck.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

welcome to the board.i am so sorry this had to come back,i had radiation and chemo pills that shrunk my tumor then they did surgery and i had a temporary bag for 6 weeks.now i am on mop up chemo oxy and 5fu for 12 treatments to make sure all of the cancer cells die.did you have anything like that.sometimes i get so sick with this chemo i want to quit but i am afraid if i quit it might come back.good luck to you....johnnybegood

Shannonlw7's picture
Shannonlw7
Posts: 27
Joined: May 2009

i had two rounds of fu treatments that lasted three days each and 30 radiatio treatments. and that was all over in june. and things had been looking good until just a few weeks when i noticed a little blood after a bm. and i just had a very bad feeling after that. and of course i was right. but now they say surgery will be the only way to go so that it wont have a good chance at coming back. so, i guess thats what im going to do. im sorry to hear the chemo makes you soo sick and i wish i had some advice for you, but the one thing i was lucky enough to experience was the fact chemo didnt make me sick the radiation was the worst..but dont quit and my prayers are with you...shannon

Shannonlw7's picture
Shannonlw7
Posts: 27
Joined: May 2009

Thank you for the advice and I will talk to my doctor. I'm very sorry about your brother and I wish you all the luck in the world.

rmcgraw
Posts: 15
Joined: Mar 2008

Location, location, location. When a colostomy is a real possibility, talk with the Wound Care/Ostomy Nurse prior to the surgery. Let them know the type of clothes you wear and ask them to mark the placement accordingly. Also, ask if after you heal if irrigation is a possibility. Irrigation allows you to control your bowel movements and can prevent you from having to wear the bag 24/7. There is a wonderful website that I stumbled upon while I had my ileostomy. I don't have the URL available right now but search out "Ostomyland". There are different sections for ileostomy, colostomy, irrigation, etc. Read as much as you can and arm yourself with lots of knowledge prior to the surgery. I knew what was going to happen but was in no way prepared...Oland gave me back my life. Wishing you the best of luck!

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

sorry to hear your cancer is back. My surgery is comming up and I am trying to prepare myself for the possibilit of a colostomy. I have come to the realization that if I have to have one, then so be it. Alot of people live normal lives with one. I know it will take alot to get used to, but we can all do that together.

Annabelle41415's picture
Annabelle41415
Posts: 6477
Joined: Feb 2009

Sorry to hear that your cancer came back. That has to be devestating news to hear after you've been through chemo and radiation. Did the cancer come back in the same original spot that you were diagnosed with or a different area.

I had radiation/chemo then surgery and I just started mop up chemo today. I have a temporary ileostomy, but I took to her so fast. I thought it would totally gross me out, but I talk to her and praise her when her output is normal - OK who out there thinks I need a shrink :) Her name is "Bella" and even though she is temporary, you do get used to your new "normal" but it takes everyone different times to accept it.

Let us know what the doctor decides what to do.

Kim

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Welcome Shannon. I'm glad you found us.

I'm so sorry for your recurrence. That SUCKS! You made it before, you can do it again. It will be ok.

The colostomy: First thing is get another opinion. Different doctors have different skills. Make sure your surgeon is a board certified Colorectol Surgeon. That is very, VERY important. Secondly, if you do get a permanent colostomy it will NOT ruin your life. At my original dx I went in for an emergency bowel obstruction surgery and woke up with colon canzer and a colostomy. I had not been able to prepare for either because I was 43 with no symptoms and no family history.

In many ways the colostomy was more difficult to deal with than the canzer. I could DO something about the canzer but the colostomy just was. I was scared and so was my very supportive husband. As it turned out, I could work, swim, hike....everything I did before the colostomy. I was able to have a successful reversal, but I warned everyone that if it was not 100% successful I'd be back for my colostomy. After having one, I'm no longer afraid to have a permanent one. We have a member that doesn't post often anymore (JimBob) that says, "Better a bag than a box". He has a permanent ostomy and also lives a full life. People won't even know unless you tell them.

Here is the very BEST support I found for every aspect of having an ostomy:

uoaa.org

They have wonderful message boards that are very active with an awesome group of people. I think it will help you prepare for what lies ahead.

Good Luck to you,

Kimby

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Permanent ostomy here.........no problems no fuss no muss..woke up one morning and bag had come off in bed and I woke up and told the wife at 3am in the morning that "Whew Hun you really need to brush your teeth" then woke up again at 5 am and decided that it wasn't her bad breath.....Oops !!! oh well, its amazing how well a spouse is about laughing with you when things go south.....You have to learn to allow yourself to be the same as you were before. Nothing has changed with or about you. You are the same person as you were before, just a little smarter about our disease is all. Never let the small stuff(ostomy) bother ya. I can actually fart in public now and not worry about it(not that I did before) but I now have an excuse, Im legal now !!! so enjoy your life with the ostomy, it is lots better than the alternative...One good point...a colonoscopy now doesn't make my butt raw anymore... keep smiling :-)

Shannonlw7's picture
Shannonlw7
Posts: 27
Joined: May 2009

well, after meeting all you great people on here, i am starting to calm down a little about my surgery. i dont want to do it, but im going to do it, and if everyone here can do it, so can i. i dont feel so emberrassed or alone now. And some of you had made me laugh until i almost peed my pants..lol.. and that actually felt pretty good :)

rustypipes12's picture
rustypipes12
Posts: 9
Joined: May 2009

Hi, do you live near a major cancer treatment center? A second opinion is never a bad idea. I've just had a cat scan and will find out next week when I start my chemo what stage I've progressed to. I would find the idea of a bag a little upsetting too, but I'm a single parent with a son that needs me and so whatever it takes, I'm gonna do it! You have to have that sort of mentality and not give in to fear. I know it's not easy but, when you're feeling lost just think of your kids. It helps me get through.

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