Lydia666 wrote:I am not working since i am home with my one year old but I think u can totally work, it's basically invisible and you just go to the bathroom a few times a day for a few minutes. The downside is that it really stinks, more than any diahrea you've ever had. But bring a bathroom spray and it will be ok.
tammylayne wrote:5 years ago my surgeon talked to me about the "wait and see" option...that it was being done in Europe with some good results. He said I would have a colonoscopy about every 3 months. The reason was that it appared that I had a "complete response" to the chemoradiation. I opted for the surgery, and glad I did as there were still cancer cells present. My surgeon told me good call.
This journey is full of unknowns and what ifs. The best you can do is try to make choices that give you the best odds and that YOU can live with. A surgeon that you trust (like others have said) is crucial. One of the few good things about this disease is that it is normally slow growing, so you can get a second...or third...or fourth opinion if needed. Obviously you don't want to dilly dally....but you can take a couple of weeks to do your homework.
As for the ileo...what really helped me to get my head around it was a poster that said " A bag or a BOX...your choice." I pick the bag. Hated my ileo. Had all sorts of issues with leaking, itching etc...but it beat the alternative hands down. Had my reversal. DIdn't work out. I now do a daily enema. Not as issue. Others have colostomies. Not an issue. My point....there are options that can help you get through most situations to make them doable. But not getting ALL the treatment needed because you are afraid your life will not be the same or not always easy...not even an option in MY mind.
Will your life be the same...nope. Will your life be worse? Not necessarily...just different. As a teacher, will you be able to teach? Most likely!!! You will just find ways to make you new normal...normal again.
And by the way...with an ileo, yes, you do need to empty it more often, but everyone is different...and you usually have warning...I had to empty about every 2 - 3 hours, but it takes minutes, so was easy enough to do on breaks and lunch time. I also found little tricks during the day that worked for me - ie didn't eat as much, picked certain foods that took a longer transit time etc...and I added mouthwash to my bag to help with the odor...made a HUGE difference. DIdn't make all the smell go away...but hey...no one else is "smell free" either
We do understand...there is soooooo much to think about and this is a scarey ride. Try to hold onto the fact that alot of this is temporary....alot of options are out there to help with whatever comes along....but as someone said...you want to be here to complain about it all for a very very long time....
Sending you many gentle hugs as you find your way...
PRS wrote:Nica, if you haven't yet seen this article http://gastro.oxfordjournals.org/conten ... ov039.full then reading it might keep you out of mischief for an hour or two.
Lydia666 wrote:No, the bag is not supposed to smell unless you have a leak going on, but when you empty it , then it stinks because it's fermented food with enzymes- the digestion stop at the bottom of the short intestin ( ileum).
Nica432 wrote:Lydia666 wrote:No, the bag is not supposed to smell unless you have a leak going on, but when you empty it , then it stinks because it's fermented food with enzymes- the digestion stop at the bottom of the short intestin ( ileum).
Thank goodness! I was pretty grossed out at that thought!
It is possible to live a quality life with an ostomy.
EverySunriseCounts wrote:
Professional football and boxing are likely out
Rolf Benirschke played for the Chargers with an ileostomy.
PainInTheAss wrote:Nica432 wrote:Lydia666 wrote:No, the bag is not supposed to smell unless you have a leak going on, but when you empty it , then it stinks because it's fermented food with enzymes- the digestion stop at the bottom of the short intestin ( ileum).
Thank goodness! I was pretty grossed out at that thought!
Bear in mind that if your tumor is very low and they can't save the sphincter, you will get a permanent colostomy rather than an illeostomy. The big difference is that stool is thicker, more like normal poop, so you just poop from a different place. I only empty my bag at home. Also, irrigating is an option for colostomy. It's like an enema. Some successful Irrigators don't wear a bag at all. I'm hit and miss with irrigation because sometimes it's easier to just slap a new bag on and other times I might want to wear a fitted dress and not want to worry about a bag bulge. They have mini bags that are the size of a small coffee can lid.
Regardless, there are a lot of options and life can be pretty "normal" even with a permanent colostomy. I remember reading about an irrigator that still wore bikinis at the beach (with a bandage over the stoma) and that really inspired me.
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