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Update - Colostomy

sistermoon
Posts: 12
Joined: Oct 2011

I went for my OB-GYN consult today. Very thorough and painful exam. The tumor has extended and created a recto-vaginal fistula. My doctor says that radiation therapy will only make it worse, and I may start leaking fecal matter from my vagina. So I'm scheduled for a temporary colostomy. He'll resect the colon after radiation.

Has anyone here had a colostomy? Is the bag difficult to maintain? How did it affect your quality of life?

This is all so overwhelming. My head is spinning...

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

There are anal cancer survivors on the rare cancer alliance web site who have had a colostomy (permanent), and do quite well and can explain how they take care of it and another anal cancer survivor who had a temporary one, and has now been re connected.

There are survivors on the CSN correctol board who have had temporary colostomys and have been reconnected and are fine. My dad actually had a temporary one and was re connected after 6 months, although his was realted to an infection in the colon from diver ticulitus (sp). Please post your question on the correctol board, and you will find many survivors will give you information. I have you in my thoughts and prayers. I realize this must be so over whelming, but you can do this, and may survivors have done this and are fine. Lori

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

I'm sorry that you are going to have to have a temp colostomy. Lori has given you some good advice--check with those on the colorectal board on this website--there should be someone there who can give you lots of information on living with an ostomy. Also, Rare Cancer Alliance does have some ostomates who, I'm sure, would be willing to share info with you. I wish you all the best and hope you'll keep us posted on when you are going to have surgery. The good news is it will be temporary, so please keep your head up.

Phoebesnow
Posts: 447
Joined: Apr 2011

I am sorry you have to go thru this. My husband has a colostomy and he lives a great life. He has had it since he was 17 and he is 55 now. His was due to chronic colitis.

Cyberhugs to you.

Carrol

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

If your tumor is that large, you must have been feeling awful for a good long while.

You will feel better in the days ahead. Like all of us, find the best doctor and hospital you can and let them do their work while you rest, rest, rest so you can heal, heal, heal.

No matter what, better days will lie ahead for you. Rest assured.

All the best,
Sandy

sistermoon
Posts: 12
Joined: Oct 2011

Thanks to all for your support and positive energy. I go for surgery tomorrow at 10 am. I'm feeling very optimistic.

Phoebesnow
Posts: 447
Joined: Apr 2011

Good luck and quick healing vibes are sent your way!

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

Please let us know how you're doing as soon as you're able to...

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

Sending positive thoughts your way. After this is done you can start your treatment to get rid of the cancer. I wish you the best. Post when you can. Lori

pjs62
Posts: 95
Joined: Sep 2011

Sistermoon...
so sorry for all you're having to go thru. I understand your concern about having an 'ostomy' (as my nurse called it). She gave me the website of: www.ostomy.org for information.
I was told by my original drs when my cancer returned I'd need major surgery (remove part of the colon & rectum then permanent ostomy). I just couldn't wrap my brain around this 'lifestyle change' no matter how I tried. I'm told by a few familar with an ostomy their easy to care for & hardly noticable. My cousin's brother-in-law has one & you'd never know. He runs, swims, same as before.
Maybe it won't be too bad since only temporary. But I'm glad I got a 2nd opinion because a permanent one is a different story.

shirlann54
Posts: 161
Joined: Aug 2011

Sorry to hear about your surgery .So glad its a temporary colostomy.My prays with you. shirley

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

Thinking of you and keeping you in my prayers for a successful surgery tomorrow and a quick recovery. We would love to hear from you when you are up to it. May God bless.

Ann_i_
Posts: 47
Joined: Oct 2011

I was diagnosed in January and had a ten day stay in the hospital while they determined what was going on. Once they diagnosed the next step was a colostomy and a port. (I had surgery and received both before leaving the hospital.)

I had written this long winded description thingy and then thought about it, and really if you'd like details you can ask me. (I'll try to remember to check this board, I just registered today and saw your question.)

Is the bag difficult to maintain? No (It's actually pretty simply to keep it clean.) It may take a little getting use to, but it's not that hard or involved.)

I've got a slight complication with mine as I have Psoriasis and have developed an allergy to adhesives. (My kids are allergic to adhesives, I always wondered where they got it, now I know.)

The wafer (The part that attaches to the skin that the bag attaches to) gets changed out about once a week. (You may go through more at first as you get the hang of putting them on correctly and what works best for you since you need to 'cut' the wafer to fit your stoma.)

Quality of life change? Not really. (I'm still recovering from the radiation and chemo mostly) And when I think of the colostomy I really don't think that it limits me in anyway. (But, I'm not incredibly athletic at this point in my life, I'm 45 and I love sports but the nerve damage and side affects that I'm dealing with limit me, the colostomy doesn't.) Mostly, I drive my two minor children to everything they need to do, and go where ever I use to go. In that sense, the colostomy hasn't changed anything for me. (Oh, and I LOVE to eat out, and I continue to do so.)

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

I thank you so much for sharing this info with us and telling us what your experience is in living with a colostomy. As you might know, there's lots of fear when this topic comes up. It's good for us to hear that it's not anything we can't deal with if necessary. I wish you well!

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

Hello, and welcome. Thank you for sharing your story. Its quite scary to have a change in your life with the colostomy, but to save your life its of course certainly worth it. I appreciate the fact that you still do what you used to do, and it doesn't interfere in your life. I see that you probably completed tx by March? I know it took me a good 6 months to regain most of my stamina, but now at more than 2 years and 4 months post tx, I feel great and have all my stamina back. I wish you well, and keep us posted. Lori

Ann_i_
Posts: 47
Joined: Oct 2011

I went into the hospital January 15th, came out on the 24th.

Feb 14th I began treatments and I completed treatment (chemo and radiation)on April 12, 2011.

sistermoon
Posts: 12
Joined: Oct 2011

Had the surgery 3 days ago. The procedure went very well. I'm having a somewhat difficult recovery, which I attribute more to never having undergone surgery. I've had quite a bit of pain and nausea, but the doctors have worked really well with me at making adjustments to pain meds. I've changed my bag once (just to get practice). It's not as difficult as I thought, and the bag itself is not at all intrusive. I ate my first meal with solid food today - so far, so good :-)

Ann_i_, thank you so much for your response. You and the people at the colon cancer message board have alleviated so much of my anxiety. You've given me hope, and I'll be forever grateful.

sistermoon
Posts: 12
Joined: Oct 2011

Oops - forgot to add that I'm going home tommorow. I have a meeting with my treatment team on Wednesday, and should begin chemo and radiation next week. I'm really eager to get my treatment started.

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

I am so glad your doing so well, and will get to go home tomorrow. Then you will begin treatment and be on your way to curing yourself. I am sending thoughts and prayers your way. Keep us posted. Lori

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

It's so good to hear from you and know that your surgery went well! I'm glad to hear you are going home tomorrow and I hope your recovery will quicken its pace once you're out of that hospital! Please keep us posted and know that you remain in my thoughts and prayers.

Ann_i_
Posts: 47
Joined: Oct 2011

Ann_i_, thank you so much for your response. You and the people at the colon cancer message board have alleviated so much of my anxiety. You've given me hope, and I'll be forever grateful.

If you have any questions or concerns, please, don't hesitate to ask. I'd be happy to share my experience with you.

The getting use to it phase is the hardest. (The mental can get to you at first. The physical end of it, once the recovery stage is over, really isn't that bad.)

10 months out from the original surgery and honest to goodness I forget at times that it is even there. (And I never thought it would get to that point.)

It doesn't affect the way I see myself. It doesn't affect the way I dress. (Though I've never been a dress wearer, not with my psoriasis. But I wear jeans and I'm a lover of T-shirts, specially animal ones or odd sayings.)

I use to wear over sized T's (I'm bigger up top then down below) so I wore larger t-shirts to somewhat try to de-emphasize my size. Now that I've lost some weight, and what I've been through, shoot, the heck with it, I moved down to xlarge shirts and I just need to be mindful of the fact that the bag will sometimes peek out the bottom.(I could probably wear large shirts, but I have the hernia behind my stoma, so it sticks out a bit more than it would otherwise and that isn't something I want to show.)

You might want to ask your doc if there's anything that will help avoid that, as I honestly have no clue what I did (or that I might have done wrong) that got me the hernia in the first place. (Except for the fact that I had a brand new great niece that I refused not to life, hug, and cuddle, even as she got bigger.) Hey, I'll do just about anything for unconditional love. :)

That, and, to be honest, I've never had a 'slow' button. I just do what I do. (I once took Tae Kwon Do exercise classes and during sparring; one on one with other classmates, the Master asked if I couldn't tone it down a bit, when he saw my attempts at 'toning it down' he became my official sparring partner and when he wasn't able, I was only allowed to spar with his assistant who was also a black belt.) lol

Which should explain how I wound up with a hernia behind it. (I seriously don't know how to do things easier or slower.)

eihtak
Posts: 809
Joined: Oct 2011

Hi, I am new to this site and so happy to be here! I was diagnosed with Stage 3 Anal Cancer in Jan. 2011. I had a colostomy put in right away and began chemo and radiation together. It took some getting used to but is really not bad. I was happy to have it during the painful healing from radiation and dont know how I could have kept that area clean without it. I still have it and am waiting to here "cancer free". The original plan was to reconnect but I have learned that that is not always possible due to some damage to the anal area from radiation....healing and time will tell. The hardest part is that everyday people, even family try to be understanding but they just dont know what its like. You learn to develop a system that works for you and learn that certain foods affect your digestive process different than before, not bad just different. How I dress is a little change too. The bag lays flat and when I have stool in it I empty it soon as I can, but I am slim and used to tuck shirts in and now I mostly where loose longer tops....not such a bad thing in the whole picture of life. Its kinda like a portable bthroom if you cant get there and need to!!! There are annoying problems though....I had to try different brands to find what works best for me. Some leaked a little!!!, some itched!!!, ect. but I did in time figure it out. There are support groups with great ideas and nurses called stoma nurses in most areas that can help find what works for you. Good luck on this part of your journey and always know no matter how you feel you are NOT alone, there are a lot of people out there in the same boat if you just look. I'll try to keep in touch.

eihtak
Posts: 809
Joined: Oct 2011

Hi, I am new to this site and so happy to be here! I was diagnosed with Stage 3 Anal Cancer in Jan. 2011. I had a colostomy put in right away and began chemo and radiation together. It took some getting used to but is really not bad. I was happy to have it during the painful healing from radiation and dont know how I could have kept that area clean without it. I still have it and am waiting to here "cancer free". The original plan was to reconnect but I have learned that that is not always possible due to some damage to the anal area from radiation....healing and time will tell. The hardest part is that everyday people, even family try to be understanding but they just dont know what its like. You learn to develop a system that works for you and learn that certain foods affect your digestive process different than before, not bad just different. How I dress is a little change too. The bag lays flat and when I have stool in it I empty it soon as I can, but I am slim and used to tuck shirts in and now I mostly where loose longer tops....not such a bad thing in the whole picture of life. Its kinda like a portable bthroom if you cant get there and need to!!! There are annoying problems though....I had to try different brands to find what works best for me. Some leaked a little!!!, some itched!!!, ect. but I did in time figure it out. There are support groups with great ideas and nurses called stoma nurses in most areas that can help find what works for you. Good luck on this part of your journey and always know no matter how you feel you are NOT alone, there are a lot of people out there in the same boat if you just look. I'll try to keep in touch.

Phoebesnow
Posts: 447
Joined: Apr 2011

Welcome. Your experience and knowledge is needed here. It sounds like you adapt well to change. I think change is very difficult for most people, maybe you could share with us, how you learned to accept change.

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