Okay baggers, I’m ready to join the club!
Most of you already know my story and for those who don’t I’ll give you a quick review. April 2009 was Dx advanced stage 3 colorectal cancer, 45 radiation treatments while being on 5FU pump. Surgery to remove tumor and ileostomy was put in. Then 18 weeks of chemo 5FU, Oxaliplatin and whatever else they pumped into me. After my ileostomy take down I was hospitalized 7 times in 6 months with blockages. The last time was when I had my last surgery (Nov 2010). It took them almost 6 hrs to cut out all of the scar tissue from my prior surgeries and radiation damage with removal of the Ileocecal Valve. So now I’m about 2 years or so of being NED.
I can no longer work do to Short Bowel Syndrome and Peripheral Neuropathy and spend most days at home doing what I can around the house and pooping. Oh, and I do collect vintage bicycles and work on restoring them when I’m able but most of the time my leg pain and the fact that I poop all the time keeps me at home.
Now that everyone has the low down on my health here’s what I’m thinking. It’s been almost 1 ½ years and I still have almost no or little control of my BM’s and when I feel the urge to go I have about 8 seconds to get to a bathroom or it’s too late. I’ve tried everything known to man to help control my BM’s or to at least get to where I can more or less control the time of day that I have what I call “The Poops” For the most part it’s been working but still leaves me pretty much homebound 80% to 90% of the time and I’m missing a lot of the family activities do to being scared of being hit with “The Poops” The one time I went camping with the wife and kids I was up all night freezing and pooping for hours and hours in the porta - potty and had to go home the next day. I don’t go to the movies, out to dinner, school activities, to friends’ houses, and etc. Lately I’ve been thinking of joining the bagger club by getting a colostomy. My doctors feel that at this time it just might be my best choice and chance at having somewhat of a normal life and I’m getting to the point that I’m just tired of the whole cancer, pooping, neuropathy, cramping, and painful, ordeal. The whole thing just SUCKS!!!
I go and see my GI doctor who does my colonoscopy next month and depending on what he says is going to play a large part on what to do next. I’ve already talked to my regular doctor and my surgeon and they both think it’s the thing to do. But I have a few questions for him. First, If I’m going poop 20 to 100 times a day as it is wont I just go into the bag and have to empty it 20 to 100 times a day? Cramping, I get the worse cramping at times I wonder if it would stop the cramping? And if I get the bag I feel it’s just another option that I have used up for any future problems. Yes? No?
Please let me know what you guys think and if you have any answers to my questions or other questions I can ask please let me know,
Brooks
Comments
-
Greetings,Brooks.....
As you know, if you recall, i never had any choice in the matter when first given my Dx so i never think of "what if" as it won't change anything. Since i'm still here,life is liveable with a colostomy....If its medically safe to do (we are a little older now,plus you've had surgeries in that area previously)it should result in a better quality of life in that you will no longer be so dependent upon a toilet. There are a number of things i can no longer do or can do with a bit of difficulty,such as walking down steps but nothing that prevents me from living.......It will take some getting used to but it has its advantages as well.
'
Have Bag, Will Live.......steve0 -
My experience over the last year or so
is that the bag is a convenience. I never have to sit on the toilet, and my bowels tend to produce on the same kind of schedule that I had pre-surgery (I use a disposable bag, and change it every couple of days, with an occasional day where I might change it several times). I have had a couple of experiences with diarrhea where the bag filled up quickly, but it never created an emergency situation (though a really full disposable is a cleanup disaster waiting to happen). And, if you have enough colon left, you can try irrigating. An hour spent near the bathroom every other day or so and you won't put anything into the bags.
It sounds like they may have bypassed some of your colon, or that they went with a J-Pouch, and it sounds like you have diarrhea on a semi-permanent basis. Depending on how much colon is left, it should return to normal production with the addition of an ostomy. Since the APR the only pain I had was when I overdid the pain meds and got blocked up. Not a blockage, but standard opioid constipation.
Lastly, an ostomy may actually prevent those future problems (though it could present a couple of its own). For a really broad set of viewpoints you might want to visit the UOAA Forum. They have not all had cancer, but they all have ostomies, with lots of tips on the finer points of living with one.
Blake0 -
Hi Brooks
I don't post much anymore either...the board has changed so much since we first joined plus I am super busy. But let me give you my perspective on the "bag".
Remember - this is MY experience.
I was where you are - pooping all day, every day for months on end. No control, no ability to even go to the grocery store, etc. I lasted only 9 months, compared to your 1 1/2 years, but my docs also said it was the only thing I could do. I wasn't happy about it at the time, but coped. You know what? It was the best thing I could have done. It gave me my life back. No, I do not poop 20-30 times a day in the bag. It seems to have regulated over time to a more normal routine. I empty 2-3 times a day some days - only once other days. Like anything, it has a lot to do with what I eat. Anything fried, no matter how small the amount, will cause an immediate colon emptying. But eating a balanced diet (ha - like I stick to that!) will keep you somewhat 'regular'. There can be odor - but if you use the products properly, it's not an issue. I have deodorizers that I put in every time I open it, and they work very well. I happen to use a two-part, draining system, but others use a one use throw-away bag. Personal choice.
There's not much I can't do. I cannot bend over easily, but I think that's more my hip problems from radiation than wearing the bag. I travel a lot for work - by car. I put 45,000 miles on my last car in 20 months. No problems there - just have a lot of supplies with you. Flying is another story...flying doesn't bother me, but the $$%%# TSA people do. I get strip searched every time because of the bag. So, I just don't fly anymore unless it's out of the country.
Bottom line - go for it. Get yourself a very good ostomy nurse BEFORE the surgery, and you will be fully prepared. He/she will mark the spot that is best for you (as opposed to letting the surgeon guess), offer training and support and generally make the transition easy for you.
Take care, and good luck with your decision.
Vicki0 -
Dear Brooks
I have had my colostomy for 2 years now. I never had to go through what you have, but given the choice of the two I would go with the bag.
I use the two-piece drainable, but have been considering going to the one-piece drainable. I know some prefer the one-use, but I find it convenient to be able to empty rather than replace, especially when out and about.
As with anything it will take some getting used to and feeling comfortable with, but it definately won't keep you chained to the bathroom and missing life like you are now.
It is difficult to tell how often you will have to empty or change because a lot depends on how much intestine you have left. You don't mention how much you go at any one time, but surely not enough to fill a bag even half full, unless diareah is your main issue.
Don't think of it as 'using up an option'. If something should happen in the future, having made this choice should not make any difference that I can see.
My vote would be to go for it if your docs are in agreement that it is a viable option for you. You need to be able to live your life somewhere other than in the bathroom!
Hugs and please keep us posted on what you do.
Marie who loves kitties0 -
ManageableLovekitties said:Dear Brooks
I have had my colostomy for 2 years now. I never had to go through what you have, but given the choice of the two I would go with the bag.
I use the two-piece drainable, but have been considering going to the one-piece drainable. I know some prefer the one-use, but I find it convenient to be able to empty rather than replace, especially when out and about.
As with anything it will take some getting used to and feeling comfortable with, but it definately won't keep you chained to the bathroom and missing life like you are now.
It is difficult to tell how often you will have to empty or change because a lot depends on how much intestine you have left. You don't mention how much you go at any one time, but surely not enough to fill a bag even half full, unless diareah is your main issue.
Don't think of it as 'using up an option'. If something should happen in the future, having made this choice should not make any difference that I can see.
My vote would be to go for it if your docs are in agreement that it is a viable option for you. You need to be able to live your life somewhere other than in the bathroom!
Hugs and please keep us posted on what you do.
Marie who loves kitties
What you are going through sounds just miserable. My experience is that ileostomy (my case) is absolutely manageable after initial adjustment period to grow adept at using the products and learn what works for you. I work, exercise, swim --> can't think of any limitation due to bag. If you decide to go for it, lean on the ostomy nurses...they're great and can hook you up with lots of samples so you find right fit.0 -
You'll be so much better offwmcbane said:Manageable
What you are going through sounds just miserable. My experience is that ileostomy (my case) is absolutely manageable after initial adjustment period to grow adept at using the products and learn what works for you. I work, exercise, swim --> can't think of any limitation due to bag. If you decide to go for it, lean on the ostomy nurses...they're great and can hook you up with lots of samples so you find right fit.
You'll be so much better off & have your freedom back with a bag. (Best thing that has ever happened for me treatment wise)
As Blake said check out the UOAA forum, lots of great info there. Expierment with several types of bags ect till you find what works best for you. You can get free samples from the various manufacturers to try (Just call them)
I am happy with the Hollister brand 2-piece types. Use both the drainable and disposable depending on where/what Im doing.0 -
bagger
I've only had a colostomy bag since December. The first month or so was hard... but these does I feel it's VERY easy.
the doc's have told me that they would like to do the reversal in early July.
After reading others input, I get a bit nervous for this reversal.
question for you and others... is there some "time table" or "time formula" as to how long one has the bag and then cannot adjust after the reversal? Like is it 3, 6, 12 months?
or
Is it more related to the amount of colon taken out vs. a timeframe for the butt to realize that it has to "go back to work".
as for reading your story and hearing how tough life is... man, I'd go for the bag.
If my doctors were to tell me that i had 50% chance of going through what you are going through... i would not reverse this and i'd live with it.
I use a one piece bag that i can empty within minutes. I've emptied on airplanes, and many various places... i often forget its there.
also, I'm in the middle of my chemo treatments and diarea is common during day 3 after 3 days of chemo... and it's really no issue at all. Accept i might have to stop by a McDonald's to empty a few times that day. But a couple Amonium AD's make a big difference.
good luck with everything... I hope life improves for you, quickly.
my best
Joe0 -
Just Do It!
I had my ileo reversed in 2008. I went almost 3 years trying to make my new plumbing work. Finally, in August of 2011, after trying everything I could possibly think of to make things work, I waved the white flag of surrender and practically begged my surgeon to give me a permanent colostomy. It was really, really hard for me to get my head around it - but I can assure you, I am SO HAPPY to have my colostomy and more importantly, to have my life back.
I remember waking up in the recovery room after the colostomy surgery and thinking "YES! It's over - no more pain, no more days of pooping 20-25X a day, no more being stuck at home all the time; it's OVER!".
I can honestly say I adjusted immediately to life with my ostomy again (I had a temporary ileostomy for 1 year when I first went through treatment). It was like riding a bike - something you never forget. I know it sounds crazy that as bad as my quality of life was that I still waited almost 3 years to opt for a permanent colostomy - but that's what it took. Even my husband said "I can't believe it took you that long".
The surgery was done laproscopically and recovery was very quick. I have no limitations as to what I can/can't do with my ostomy. And seeing how I have almost 3 years of lost time to make up for, I'm very, very busy these days!0 -
question...NWGirl said:Just Do It!
I had my ileo reversed in 2008. I went almost 3 years trying to make my new plumbing work. Finally, in August of 2011, after trying everything I could possibly think of to make things work, I waved the white flag of surrender and practically begged my surgeon to give me a permanent colostomy. It was really, really hard for me to get my head around it - but I can assure you, I am SO HAPPY to have my colostomy and more importantly, to have my life back.
I remember waking up in the recovery room after the colostomy surgery and thinking "YES! It's over - no more pain, no more days of pooping 20-25X a day, no more being stuck at home all the time; it's OVER!".
I can honestly say I adjusted immediately to life with my ostomy again (I had a temporary ileostomy for 1 year when I first went through treatment). It was like riding a bike - something you never forget. I know it sounds crazy that as bad as my quality of life was that I still waited almost 3 years to opt for a permanent colostomy - but that's what it took. Even my husband said "I can't believe it took you that long".
The surgery was done laproscopically and recovery was very quick. I have no limitations as to what I can/can't do with my ostomy. And seeing how I have almost 3 years of lost time to make up for, I'm very, very busy these days!
is there a "difference" between a permenant and temporary colostomy?
just curious... as i had the colostomy surgery in December 2011 and they plan to "reconnect" me in July 2012.
I will only lose about a foot or so of my upper colon. (transverse colon).
my ilostomy is very high... just under my lowest rib, to the right side, right by my liver.
just curious what you can share.0 -
The "BAG"
Hello everyone. I havent been on here very often. But I am glad I logged on tonight. Brooks, I was happy to read your post. Back in Jan 2009 I was dignosed with Colorectal Cancer. March 2009 Went for surgery to have the tumor removed. They removed 34 lymph nodes, 1 tested postive, which put me at Stage 3 cat B. I also had a temporary ilestomy(sp) bag for almost a yr. I also underwent 6 wks of radiation along with chemo (5FU and cant recall the other name). Since March of 2009 I have had numerous surgeries due to blockages where they had to remove parts of my colon. Was admitted also because I couldnt keep anything down and was dehrydarated. In the beginning my stools were so loose it was awful, I would cry and cry. I also had to have a feeding tube for a few months, that didnt help out that much, made me go to the bathroom more and more. All I can remember is I could wait until I was "rehooked" back up. I have regretted that every day. They also removed my ileocecal Valve back in 2010 since I couldnt eat n keep things down. I try to watch what I eat and drink, because it runs right thru me. I am 49 yrs old with still a 12 yr old and a 9 yr old home that I am raising on my own. Last yr I also had a nephsotmy (sp) bag coming out my left kidney thru my back for about 3 to 4 months. I went in June of last yr to have a colonscopy and my bowel was preferred so that meant emergency surgery. There are many times I have thought the same about getting the bag back. My surgergon said it would be the best, my GI dr is for it, My cancer dr isnt against it, said I have had so many surgeries in the past it would be to hard on my body. But I can tell everyone that I can take up to 8 or more a day plus medication for nauesa, pain and anxiety. I am still dealing with depression. I also spend alot of time home so I can be in my own bathroom. If I do go outside of the house I take a "diaper" bag. Dont do family things like we used to. There are times I have to help my kids with school work and will be in my bathroom, but they no, so they come and sit on the floor. All I know is that I want a better quality of life, where I can take my kids and grandsons places without worrying about finding the bathroom right away. I am also nervous wondering what if it something happens after the surgery n I have more probelms. I do no this my bottom gets very very sore. My GI dr said to remove the whole colon and my surgeron says no but I agree with my GI dr.
I do no the stools have changed thoughout the months/yr. Right now my thryoid is giving me issues. At first it was hyper and now its hypo. My Cancer dr thinks if they straighten out my thryoid then my GI system should be better. I also have a stent in the right urterer(sp) that gets exchanged every 3 to 4 months. Been doing this for the past yr. Next time they will put in a metal one that will stay 4 a yr.
Thank you all for sharing your own jounerys, thoughts etc. It has given me lots to think about also. Wearing diapers anymore isnt 2 much fun.
. 0 -
Joe temp/permjoemetz said:question...
is there a "difference" between a permenant and temporary colostomy?
just curious... as i had the colostomy surgery in December 2011 and they plan to "reconnect" me in July 2012.
I will only lose about a foot or so of my upper colon. (transverse colon).
my ilostomy is very high... just under my lowest rib, to the right side, right by my liver.
just curious what you can share.
Joe,
If I had to do it all over again, I would of kept my bag permanently. Had nothing but probelms since I was reconnected.
Barbara0 -
Joe temp/permjoemetz said:question...
is there a "difference" between a permenant and temporary colostomy?
just curious... as i had the colostomy surgery in December 2011 and they plan to "reconnect" me in July 2012.
I will only lose about a foot or so of my upper colon. (transverse colon).
my ilostomy is very high... just under my lowest rib, to the right side, right by my liver.
just curious what you can share.
Joe,
If I had to do it all over again, I would of kept my bag permanently. Had nothing but probelms since I was reconnected.
Barbara0 -
I joined and haven't looked back!!!
I also spent about 18 mos. either in the bathroom or looking for one. I also spent several hours a day in the tub soaking my sore bottom----all while working full time. I prayed every day not to poop in my my pants at work. Sometimes I did.
I made the toughest decision of my life and chose a colostomy. That was in 1/05. I havent looked back. It gave me my life back. I just returned from a vacation in Florida. I have never had any issues at airport security. I took my first cruise when i was 8 weeks postop and even went snorkeling.
I now irrigate my ostomy daily. It makes me empty it alot less. Ususally I dont have to empty it at all between irrigations.
Good luck with your decision.
Maureen0 -
BagMoesimo said:I joined and haven't looked back!!!
I also spent about 18 mos. either in the bathroom or looking for one. I also spent several hours a day in the tub soaking my sore bottom----all while working full time. I prayed every day not to poop in my my pants at work. Sometimes I did.
I made the toughest decision of my life and chose a colostomy. That was in 1/05. I havent looked back. It gave me my life back. I just returned from a vacation in Florida. I have never had any issues at airport security. I took my first cruise when i was 8 weeks postop and even went snorkeling.
I now irrigate my ostomy daily. It makes me empty it alot less. Ususally I dont have to empty it at all between irrigations.
Good luck with your decision.
Maureen
Thank you for sharing your story Maureen.0 -
Hi everyonetootsie1 said:Go for it!
I'm not a bagger, but I know you've had so much trouble. It seems to me this would be a great relief for you.
*hugs*
Gail
YEA, YEA going to meet my surgeron on Monday to see when I can go in for surgery to get my bag back.0 -
Hi everyonetootsie1 said:Go for it!
I'm not a bagger, but I know you've had so much trouble. It seems to me this would be a great relief for you.
*hugs*
Gail
YEA, YEA going to meet my surgeron on Monday to see when I can go in for surgery to get my bag back.0 -
HIbspangler47 said:Hi everyone
YEA, YEA going to meet my surgeron on Monday to see when I can go in for surgery to get my bag back.
I'm a new ostomate,
HI
I'm a new ostomate, surgery 2/29/12. I was dx 3/11/11 w/ stage 3 colorectal cancer, did 6 weeks of chemo/radiation then surgery in July 2011 and temporary ileostomy. Pure horror w/blown wafers, skin infection, etc, you name it ,I had it.
12/20/11, YES, the week of Christmas, (my choice, couldn't wait to get rid of that thing) surgery for reversal. This lasted until 2/20/12, I got very ill, vomiting, fever, chills. Off to ER, more tests, results C-diff and an absess at the point of reconnection, destroyed tissue from radiation. No more reconnect!!
Another surgery on 2/29/12 to clean everything out and give me a permanent colostomy. I couldn't be happier,
I was like some of you all, in and out of the bathroom all day and night after the reversal. Not a very happy life.....
Life with a "bag" isn't that bad, I use a two piece closed end from Hollister and just recently purchased the Colo-Majic bag liners. If you haven't tried them, do so. I think they're great. Saves money on your bags, I somedays only have to change liners every two days, just depending on what I eat. But best of all, it keeps down on the bathroom trips....and I'm free to go whenever I want.
Colo-Majic has a sample pack, 50 liners for $15 including shipping, they're out of Canada.
I hope this little info helps someone to a better life.
Best Wishes to all.
Judi0 -
OstomateJudib39 said:HI
I'm a new ostomate,
HI
I'm a new ostomate, surgery 2/29/12. I was dx 3/11/11 w/ stage 3 colorectal cancer, did 6 weeks of chemo/radiation then surgery in July 2011 and temporary ileostomy. Pure horror w/blown wafers, skin infection, etc, you name it ,I had it.
12/20/11, YES, the week of Christmas, (my choice, couldn't wait to get rid of that thing) surgery for reversal. This lasted until 2/20/12, I got very ill, vomiting, fever, chills. Off to ER, more tests, results C-diff and an absess at the point of reconnection, destroyed tissue from radiation. No more reconnect!!
Another surgery on 2/29/12 to clean everything out and give me a permanent colostomy. I couldn't be happier,
I was like some of you all, in and out of the bathroom all day and night after the reversal. Not a very happy life.....
Life with a "bag" isn't that bad, I use a two piece closed end from Hollister and just recently purchased the Colo-Majic bag liners. If you haven't tried them, do so. I think they're great. Saves money on your bags, I somedays only have to change liners every two days, just depending on what I eat. But best of all, it keeps down on the bathroom trips....and I'm free to go whenever I want.
Colo-Majic has a sample pack, 50 liners for $15 including shipping, they're out of Canada.
I hope this little info helps someone to a better life.
Best Wishes to all.
Judi
Hi Judi,
Thank you for sharing your story. Tonight I took my kids and we went to Walmart and then to the mall. Off course I have to make sure I knew where the bathrooms are at etc. My kids are 12 and 10. So they are a big help tp me. By the time I got home I was exhasted. They even have to help me out of the car and into the house because my bones hurt. And many bowel movements.
I still will be asking for my bag back.
Thanks for all the support
Barbara0 -
OstomateJudib39 said:HI
I'm a new ostomate,
HI
I'm a new ostomate, surgery 2/29/12. I was dx 3/11/11 w/ stage 3 colorectal cancer, did 6 weeks of chemo/radiation then surgery in July 2011 and temporary ileostomy. Pure horror w/blown wafers, skin infection, etc, you name it ,I had it.
12/20/11, YES, the week of Christmas, (my choice, couldn't wait to get rid of that thing) surgery for reversal. This lasted until 2/20/12, I got very ill, vomiting, fever, chills. Off to ER, more tests, results C-diff and an absess at the point of reconnection, destroyed tissue from radiation. No more reconnect!!
Another surgery on 2/29/12 to clean everything out and give me a permanent colostomy. I couldn't be happier,
I was like some of you all, in and out of the bathroom all day and night after the reversal. Not a very happy life.....
Life with a "bag" isn't that bad, I use a two piece closed end from Hollister and just recently purchased the Colo-Majic bag liners. If you haven't tried them, do so. I think they're great. Saves money on your bags, I somedays only have to change liners every two days, just depending on what I eat. But best of all, it keeps down on the bathroom trips....and I'm free to go whenever I want.
Colo-Majic has a sample pack, 50 liners for $15 including shipping, they're out of Canada.
I hope this little info helps someone to a better life.
Best Wishes to all.
Judi
Hi Judi,
Thank you for sharing your story. Tonight I took my kids and we went to Walmart and then to the mall. Off course I have to make sure I knew where the bathrooms are at etc. My kids are 12 and 10. So they are a big help tp me. By the time I got home I was exhasted. They even have to help me out of the car and into the house because my bones hurt. And many bowel movements.
I still will be asking for my bag back.
Thanks for all the support
Barbara0
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