the bag

bspangler47 · March 2012

Hi,

I havent been on here in awhile. But my situation is I was diagnosed with colonrectal cancer stage 3 in 09. Been thru so many surgeries on my colon, had an iliestompy bag (temp for a yr). went thru radiation and chemo. Had a feeding tube for a few months. Had a PICC twice and recieved TPN even when I was home. I wear a diaper 24/7 for awhile now. No longer can control my bowel movement, have to take a diaper bag with extra clothing extra. My bottom is swore all the time. Spend most of my time on the toilet, I call it my "office". It gets so bad I am crying so bad, dealt with having c-diff, colonitis, the list goes on and on. Been talking to my GI dr and my surgeron about having the bag back. Suregron says it will be a good idea for me, but will be a invasive surgery n the GI agrees it would be better for me. Surgeon wants to leave the colon in and GI says no remove it completely. Have a iliestompny(sp). I no there is no going back. Tonight I feel that I want the surgery. I was retired out of the military last yr. I have tried to c civlian drs but its hard they know the surgeron. Feel I should stay with the GI dr and Surgeron. CA dr said wait for awhile, been thru 2 many surgeries. to take immundium 2 tablets and take more when we go out.

Please any feed back positive or negative would be appreciated.

my life has changed, dont take my kids to activies

Thank Barbara

Lovekitties · March 2012

Dear Barbara
You have been through a great deal, but if I were in your place, and the doctors agree, I would opt for going back to the ostomy.

I have had a perm colostomy for two years now. While an iliostomy is a bit different, it sounds as if it will be 'liberating' for you. It will give you freedom.

Based on what you have shared, I think it will improve your quality of life and that of your children considerably.

Only you can make the decision based on your own situation and the best medical advice.

Best wishes no matter what you do.

Hugs to you and the kids,

Marie who loves kitties

Minnesotagirl · March 2012

I feel so bad for you
Barbara,

I am so sorry about everything that you are going through. I can't be of any assistance to you because I never required a bag before or after surgery.

What I wanted to say is that I hope your life can change back to "somewhat normal after cancer" with recommendations from the GI Dr. and Surgeon. I did have alot of problems with bathroom issues though and it certainly can make your life and bottom miserable.

Prayers with you as you forge ahead on this uncertain journey.

Blessings,

"Minnesotagirl"

tommycat · March 2012

Your day-to-day routinue
Your day-to-day routinue sounds just awful. If you have a choice, going back the bag just makes more sense. Can you imagine the feeling of freedom you will have again?
Good luck with this decision~

smokeyjoe · March 2012

tommycat said:
Your day-to-day routinue
Your day-to-day routinue sounds just awful. If you have a choice, going back the bag just makes more sense. Can you imagine the feeling of freedom you will have again?
Good luck with this decision~

Just out of curiosity, have
Just out of curiosity, have you tried increasing the immodium to see what happens? I know right after surgery I had to take a lot, way more than the box said, and dr.'s were not opposed to it....the only comment I got once from my Onc. when I told him how many he said "oh Wow". But, I've tapered it off and now I take three in the morning and I'm normal....I can get away with two, but with work and such three just is the perfect amount for me. Just an idea. Soem people just don't like the thought of taking pills and that's okay.

joemetz · March 2012

Greetings
hello.

sorry to hear what you're going through. My heart goes out to you.

I've only had the bag since December, and they tell me that they will do a reversal this July. We'll see if that happens.

I have read about the reversal doesn't go as smoothly as anyone ever thinks.
I can say that when i first got the bag, i thought this would be completely miserable.
It was difficult to get used to at first, but by now I am glad I have it.

If my health was such that i needed to have it for a lifetime, i could definately deal with it over what you're going through.

with the bag, you become mobile. And, once you know the right public places to visit to take care of yourself... it becomes smooth and somewhat easy.

just my two cents.

you are in my prayers!

My best

joe

plh4gail · March 2012

Barbara, I remember
Barbara, I remember you...and I am so sorry you are still having such a hard time. As I remember about a year ago there is not a change in your bathroom issues. I was worried about you then and have wondered what happened. I don't have the ileostomy anymore but I'm thinking you should look into it and research and talk with some of the people on here about opting for the surgery.

hugs to you, gail

RickMurtagh · March 2012

the bag
Barbara, I think my permanent ileostomy is as much as a life saver as was the surgery to remove my colon. I tried to work with the takedown and jpouch for a year. For some it works and for some it doesn't. I was not just miserable, having to wear depends all the time, carrying extra clothes for then the accident WAS going to happen, taking opium and every other drug under the sun to help control my bowel movements to a manageable degree. My health was spiraling out of control and getting worse and worse. Here it is eleven months later (permanent ileo on May2, 2011) and I have a job working in a bank, visit my children (and grandchildren!) whenever I can, even though they live in different states, requiring flying or long drives and generally living life like it mattered. I used to have to stop eating the day before a trip, not eat the day of the trip and take a lot of medication to stop my GI tract in order to make a trip. Now I just jump un the car and go (okay, okay, there is a little more planning to it than that).

OFC you milage may vary should you decide to go down that route. As for leaving the colon or not, I did not have the option really, but other than dehydration, nutrition, especially fat soluble vitamins (absorbed in the last 18 inches of your small intestine - mine used up in a now useless jpouch), absorption of electrolytes (done primarily in the large intestine), limited volume intake, constant watery output, frequent appliance changes, cost and inconvenience of ileostomy supplies and the contant threat of a blockage, life is perfect! Ok, might lose the house, kids live too far away, mother is thinking of retiring and I might not have a home for her to come and live with us (if that is what she wants), I owe last years taxes still and cancer might come back at any moment, but the important thing is I am ALIVE! Life never sucked so good!

Rick

lauragb · March 2012

You sure have been through a
You sure have been through a lot. It sounds like a bag is the better option for you based on what I've read. I'm still in the temporary ileostomy stage and I have to tell you that I am worried about the aftermath of the takedown. From what I understand, none of us are ever the same and we end up needing to choose which gives us the best quality of life.

I don't understand the the part about whether to take your colon out or not. It seems like a colostomy is easier just because it isn't running all the time but I don't know what your situation is (what you have left right now).

I hope you get to the place where you can resume some of your life, take your kids around. You deserve a better quality of life.

Know I am thinking of you.
Laura

plh4gail · March 2012

Wow..life never sucked so
Wow..life never sucked so good...

That is the way I will put into perspective those "down times" because there are times I am very down. You know, being blindsided forced on a path one would never have chose. But most days I see the sky much clearer, the sunshine is much warmer, sour candy makes me laugh with my kids, and I could care less if I get cut off while driving. You understand.

Thanks Barbara, your difficult post was probably very helpful to more people than you realize.

Gail

TMac52 · March 2012

plh4gail said:
Wow..life never sucked so
Wow..life never sucked so good...

That is the way I will put into perspective those "down times" because there are times I am very down. You know, being blindsided forced on a path one would never have chose. But most days I see the sky much clearer, the sunshine is much warmer, sour candy makes me laugh with my kids, and I could care less if I get cut off while driving. You understand.

Thanks Barbara, your difficult post was probably very helpful to more people than you realize.

Gail

Hi Barbara
I never had an option for a temp Ostomy, I got the perm right out of the gate. I was pissed at my surgeon for that but after reading so many stories like yours and hearing them live at my ostomy support group in Boston, I realized that the surgeon really new her s-h-i=t-, No punn intended, ok maybe a liitle punn. She probably saved me from having to go through what you are going through and what Rick went through and so many more that have the takedown. Two more surgeries. All that to say,the ostomy is not such a bad thing. Cancer changed my life forever but I am now almost back to normal,or I like to say the new normal. I am working the same as I always did eating healthier but eating well. Recently got back to lifting weights and walking (hard still with the neuropothy in feet from chemo). I had my last chemo one year ago March 21rst. And life never sucked so good for me either. I really hope you go for the ostomy and get back to living the way you deserve. And by the way....thank you, thank you, thank you for your service to our county.
Tom

TMac52 · March 2012

plh4gail said:
Wow..life never sucked so
Wow..life never sucked so good...

That is the way I will put into perspective those "down times" because there are times I am very down. You know, being blindsided forced on a path one would never have chose. But most days I see the sky much clearer, the sunshine is much warmer, sour candy makes me laugh with my kids, and I could care less if I get cut off while driving. You understand.

Thanks Barbara, your difficult post was probably very helpful to more people than you realize.

Gail

Hi Barbara
I never had an option for a temp Ostomy, I got the perm right out of the gate. I was pissed at my surgeon for that but after reading so many stories like yours and hearing them live at my ostomy support group in Boston, I realized that the surgeon really new her s-h-i=t-, No punn intended, ok maybe a liitle punn. She probably saved me from having to go through what you are going through and what Rick went through and so many more that have the takedown. Two more surgeries. All that to say,the ostomy is not such a bad thing. Cancer changed my life forever but I am now almost back to normal,or I like to say the new normal. I am working the same as I always did eating healthier but eating well. Recently got back to lifting weights and walking (hard still with the neuropothy in feet from chemo). I had my last chemo one year ago March 21rst. And life never sucked so good for me either. I really hope you go for the ostomy and get back to living the way you deserve. And by the way....thank you, thank you, thank you for your service to our county.
Tom

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