Get'n R Kicks
IN(The State of Confusion)
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Joined: 11/03/2007
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So anyone living without their colon? I am. not part, but all of it was taken out. Then it was my pancreas. I still have it but it has issues, as does my galbladder. Waiting for the PET CT this weekend, then a CT in a few weeks, then I finally get to a doctor, in Aug. But thats ok in the mean time the pain is only killing me, at times. When doing long trips I try not to eat to keep the rest stop breaks to a mininum. Did you know there are 5 types of polyps? And of the 5 the ones I get are the worst, of course. But I am still working, so I am thankful for that. If you wonder why I am colonless, it is F.A.P. , I forget the exact spelling, but it is like Familial Admentous Polyposis. Means 50 to 100 polyps in the colon. Well after that , I learned it can also affect the stomach, and evrything else in the area, except the small intestine, (usually). But if you have any questions about your family history, your better check it out. My granma past in 72 at the age of 50, she had it, but it was not known about. They discovered FAP in like 79. So after my dealings with it all, my mother had it, but she had cancer with it, and beat it, then she had the whipple, nasty surgery, another bout with cancer, beat it, so far. Also the cancer that comes with this stuff is they worst, once it comes back, it comes back with a vengence, and usually can't be stopped. I have a whole lot of info on this, as I went from Dr to Dr trying to find the one who could/would do the J Pouch, after many trips to different DRs, and many scopes, I got lucky, but he was hessitant , had to call in help, said I would be his last. Hey after the first time having a IRS,(internal rectal service) or a scope it is old school. One year I had like 4 or 5 maybe more, then 1 or 2 each after. And I also have to have the one crammed down my throat, of course I tell them not to get the scopes mixed up, or please go down the throat first. Anyway be sure to get checked, it is only embarrising if you would die because you are afraid to have a camera up your you know what. Well time to eat, need any info about, or want to talk about it, drop me a line.
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Chock Full o' Nuts
GA
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Joined: 02/02/2007
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Very interesting. The stuff we learn on RV.net 
My grandmother died of colon cancer (her 2nd bout, anyway). She had 2 colostomies there at the end. I would think it would be easier to travel in an RV than to have to rely on regular (or emergency!) stops in order to deal with your specific needs. My DH takes several heart meds, including diuretics. Some days he just can't seem to make it from one rest stop to the next, so it's a good we bring our bathroom with us. And it's clean, too
"Those who dwell...among the beauties and mysteries of the earth are never alone or weary of life."--Rachel Carson, environmentalist, 1956
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Get'n R Kicks
IN(The State of Confusion)
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Joined: 11/03/2007
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Chock Full o' Nuts wrote:Very interesting. The stuff we learn on RV.net
My grandmother died of colon cancer (her 2nd bout, anyway). She had 2 colostomies there at the end. I would think it would be easier to travel in an RV than to have to rely on regular (or emergency!) stops in order to deal with your specific needs. My DH takes several heart meds, including diuretics. Some days he just can't seem to make it from one rest stop to the next, so it's a good we bring our bathroom with us. And it's clean, too
I wish we had an nice A to travel in, but we are not rich. Them diuretics can be a pain on them bumpy roads, I bet. I do like the fact of having a clean potty with me at all times. Some rest stops are just not the cleanest, and some times you get on a long stretch of hiway with out any. I did have a illeostomy for about 4 or 5 months, that was no pic nic. Even after getting used to it , itstill sucked. Could take hours to get ready to get out of the house. Good luck to you and your DH.
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emzee
california
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Joined: 10/22/2006
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thanks for being so frank about your health. many people are afraid to have a colonoscopy but the alternative sometimes, as you so eloquently pointed out, can be horrendous. i had my first last year, doc said i'm good for 10. I also had the throat one, an endoscopy, didn't care for it either but it is a necessity to make sure our inners are okay right! best of luck to you.
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PattieAM
Maryland
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Joined: 08/03/2005
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My significant other had a ruptured colon in conjunction with diverticulitis, a few years back when he was 35, and having a C-bag was pretty depressing for him. Thankfully he only needed it for 6 months, then he had the reconnective surgery. And, boy is he careful about what he eats, etc. (There are charcoal filtered bags available as well as the 'wash and re-use' type.It took him several days of eating, timing/charting to determine when he would be comfortable going in public - found that within 1 hour of eating there'd be discharge)
His aunt is presently going through colon cancer and she is currently wearing a bag (and her husband does all the cleaning, attaching, etc.) - scheduled for reconnective surgery this month (personally I don't feel she's strong enough after the kemo/radiation ... yet). She's in her 70's now, and freely admits she had neglected her 'scopes'.
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Get'n R Kicks
IN(The State of Confusion)
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Joined: 11/03/2007
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PattieAM wrote:My significant other had a ruptured colon in conjunction with diverticulitis, a few years back when he was 35, and having a C-bag was pretty depressing for him. Thankfully he only needed it for 6 months, then he had the reconnective surgery. And, boy is he careful about what he eats, etc. (There are charcoal filtered bags available as well as the 'wash and re-use' type.It took him several days of eating, timing/charting to determine when he would be comfortable going in public - found that within 1 hour of eating there'd be discharge)
His aunt is presently going through colon cancer and she is currently wearing a bag (and her husband does all the cleaning, attaching, etc.) - scheduled for reconnective surgery this month (personally I don't feel she's strong enough after the kemo/radiation ... yet). She's in her 70's now, and freely admits she had neglected her 'scopes'.
Some reason this reminded me of a funny story. Well after a surgery like this most folks are hesitant to go anywhere. I was no different. After about 3 or 4 months of hanging around the farm I decided it was time to get back in public. Well this also happened to be the first day I really ate sometime that varied from the diet. WWhich was just soup and crackers.( During this time I still had my******sack.) Anyway I could only wear sweat pants. So as we where out on my 1st outing, to none other than Wal Mart,, all of sudden I felta little pain, I looked down and the elastic of the pants had pinched my bag in half, and it was full, on the top, now with eating crackers for the first timethe discharge,(for lack ofa usable word.) the discharge was really thick. And I was trying to be polite and rub the stuff down to the bottom of the sack. Well this lasiy kept looking at me, and I could tell she thought I was stealing something. So I said the hec with it, I lifted my shirt and started to push the stuff down. The look on her face was worth a million dollars. Yeah this is story is sick to some, or most. But after livingwith a pouch for 6 months it is normal conversation, becuase you have to talk about with alot of folks. Oh yeah if you need or want more info, here is a web site. jpouch.org. It deals witha few different colon issues. IBD, UC,diverticulitis, and FAP. go there and look around. And good luck.
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slmayor
shasta lake ca
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Joined: 04/02/2004
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Thanks for posting this. My Mom just had a colostomy a couple weeks ago. Will have to do chemo/radiation in a month or so. She was meticulous about her "scopes", but they couldn't have found this tumor. It was growing on the outside of the colon, not from a polyp. They have no idea where it came from and she had no symptoms until it closed off the opening of the colon.
Anyway, we've been trying to get her to travel with us before this happened and I really don't want her to be using the bag as an excuse not to go, as her time with us may be limited. So thanks again for providing the encouragement to others to get out there and go. Attitude really is everything. 
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jabberwocky
Vancouver BC
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Joined: 09/14/2005
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Yep, I'm living and RVing without one. Not first choice but it's so much better than the alternative.
For me the biggest issue is having a clean bathroom nearby which our RV provides, as well as having my wife available to help with the inevitable problems that do arise periodically. I also need to have quite a lot of meds on hand and always a change of clothes for those unhappy moments when all our best laid plans go awry.
Having a large supply of ostomy bags, barriers, cleaning supplies and whatever else might be needed has been the biggest issue for us. Murphy's Law dictates that if you leave home with just enough supplies you WILL need more - guaranteed! Finding the specific supplies is often difficult if not impossible in small towns and even major cities unless you already know the suppliers. Just not worth the hassle and risk IMO. Other than that the ostomy bags do seem to require a somewhat more frequent emptying of the RV garbage but that's minor.
The other issue is to know and have a written copy of at least all the salient details of your medical condition. If you do have a sudden problem, and the colon/intestine is prone to this sort of thing (11 surgeries plus several hospital stays for blockages in my case), having the details written out in medical-speak for the doctors where ever you might end up can be a life saver.
In my case I like to keep tabs on where the nearest larger hospitals are too and also making sure to have current (and significant) health insurance. My last hospital stay was 5 months!!! Can't imagine what that would have cost if I hadn't been adequately covered.
Getting out there with your RV does do wonders for your psyche though and gives you stuff to do and think about that's not related to your medical problems and that's definitely worth the extra effort.
Hope all works well for you. Enjoy!
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jajklott
AL
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Joined: 10/24/2008
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You have my admiration. I have just made my last long trip with a group on a church bus without a bathroom. I have colon issues (IBS) and just cannot eat at different locations while traveling & not have access to a bathroom. Traveled 13 hours to Smoky Mts. & tried to be very careful about what I ate (didn't eat). Wasn't successful; had to get back on the bus while sick. Will not be put in that situation again. My digestive system has too many issues.
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