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Forum Newbie
Group: Forum Members
Last Sign In: 12/18/2008 12:11 PM
Posts: 6,
Visits: 19
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Hi Everyone,
I am a new member. I have a disease called Pseudomyxoma which is a mucus cancer which affects the abdomen. It starts normally in the appendix which bursts and then the mucus which leaks out attaches itself to various organs. I had a big operation to treat this disease a year ago and ended up with 2 bags at the one time - a colostomy and a urostomy both permanent. I lost my bladder because it had been damaged accidentally by the surgeon during a hysterechtomy the year before ( this is when the disease was discovered ) and the mucus had entered my bladder which meant it could not be repaired. It was a shock to lose my bowel as well as it was working perfectly fine before the op but the surgeon found that it was covered in mucus.
Anyway I would be interested to hear from anyone who has both these bags. I sometimes feel I am the only one. I feel deformed sometimes.
I know I cope really well but sometimes I could scream. I just get on with things however. I go hill walking and swimming and deal with any problems on the way. I still however get really upset. One of the things I really hate is having to have a night bag. I have tried getting up to go to the toilet instead during the night but I drink a lot of fluid during the day and found I had to get up 4 times during the night which is exhausting.
Thanks for reading this post
Maureen
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Forum Newbie
Group: Forum Members
Last Sign In: 12/22/2008 10:53 AM
Posts: 4,
Visits: 38
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| Hi Maureen, You really are a bag lady!!!!! Just a joke, it is no fun getting used to something so foreign. You are probably still in shock at all that has happened to you. Get a good counselor and count on us to help you thru this trying time. There are many times I want to tear this bag off and throw it out onto Route 31 (the street where I live) but I know this has given me a lot more years to live that I would have had. I too get up at least 3 times a night and it is exhausting when your sleep is interrupted like that. Can you get a nap during the day, that might help. I don't know if you are working or if that is not possible in your circumstances. Take care and let me know how you are doing. Amy Each new day is healing.
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Forum Guru
Group: Forum Members
Last Sign In: 12/24/2008 7:42 PM
Posts: 62,
Visits: 117
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| Maureen: Welcome to the forum. This is a great site with lots of folks who share all of the experiences you have been and are going to go through. You will find everyone here very happy to help out with any questions you may have. The fact that you are still being active is great. The human body has an amazing ability to adapt to any situation. I firmly believe that the more that you do things that are "normal", the faster the body takes the changes you have gone through and makes them normal. I also had cancer. While my ileostomy is not quite as extensive as what you are going through, it was still a dangerous situation. While this has changed my life, the emphasis on that is LIFE. You will find that things will become routine. Again, welcome. And please don't hesitate to bring up any issues or concerns you may have.
Pain is temporary. The accomplishment lasts forever!!
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Forum Newbie
Group: Forum Members
Last Sign In: 12/18/2008 12:11 PM
Posts: 6,
Visits: 19
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Hi Amy 308 ans Running Terp.
Thanks for replying. It is good to know I am not the only one though I would not wish these bags on anyone. I am beginning to get used to them now.
Amy I wear a night bag now because apart from interupting my rest during the night if I don't ,I am worried that I do not wake up in time and bag bursts.
Thanks again
Maureen
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Supreme Being
Group: Forum Members
Last Sign In: Yesterday @ 2:16 PM
Posts: 293,
Visits: 293
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| Maureen, You have every reason to feel angry, agitated and overwhelmed at times because you have two bags. That requires a huge adjustment. I have only one bag but there are a couple of folks on this site with both a urostomy and ileostomy. I hope they come on soon. Do know that we are all here to support you and care about you. It sounds like you are well-adjusted with all that you have to contend with and determined to live life to the fullest. I'm a one bagger but up at least 3-4 times a night with my ileostomy. Fortunately, I can usually fall right back to sleep but probably have 1-2 nights a week where I feel sleep deprived. Happy 
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Supreme Being
Group: Forum Members
Last Sign In: 11/25/2008 11:19 AM
Posts: 89,
Visits: 151
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| Maureen: Just to let you know you are not the only 2 bagger. I have a Urostomy and Colostomy. Mine were installed 20 days apart. I have had them for over 4 years and seldom have any problems. Unfortunately both have had parastomal hernias twice and I had them repaired twice each. I attach the drain bag to my urostomy pouch every night and never have a problem. I use the CONVETEC 2 piece on both. Please ask if you have any questions.
Keep the Faith4 Years Urostomy/Colostomy
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Supreme Being
Group: Forum Members
Last Sign In: Yesterday @ 11:38 PM
Posts: 587,
Visits: 587
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| Hi Maureen.Welcome to the board. You are not the only one. i have both. Always willing to chat if you want to. Best wishes
----------------------------------------------------------------------------------------------- I'm not lost, this is just a diversion Cervical Cancer 1985, Urostomy 1991, Colostomy 2008
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Forum Newbie
Group: Forum Members
Last Sign In: 12/18/2008 12:11 PM
Posts: 6,
Visits: 19
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HAPPY
Thanks for your comments. Bagger is a good word. Getting up during the night I think is a big pain. At least I have an option. When I put on the night bag I can stay in bed all night.
LACEMAKER
Thanks for your reply. So there are other people out there with 2 bags. I somehow feel better about myself.
DKR
Another 2 bagger wow ! Thanks for replying. I think just knowing there are others makes me feel not so alone anymore.
Does anyone live near Glasgow ? It would be good to meet up with someone for a chat. I get fed up on the computer. It is hard to know what to type.
Take care
Maureen
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