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Ileostomy Possibility

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  • isessums
    Hi, I m 58 years old and looking at the possibility of having to have an ileostomy. Those of you that have one, has it been a pain or was it worth it? I have
    Message 1 of 8 , Mar 2, 2012
      Hi,

      I'm 58 years old and looking at the possibility of having to have an ileostomy. Those of you that have one, has it been a pain or was it worth it?

      I have suffered through a partially working colon, non-functioning colon due to medication that I need to take for a rare medical condition
      and having to use every laxative and enema under the sun for a bowel movement. I'm just wondering if the ileostomy really would make life easier and better and how does it affect everyday life, especially, travel, being able to eat and not worrying if you have to spend a day in the bathroom just to make some room in the gut.

      Any tips of things to look for and how it has affected different people is much appreciated. I am scared to death of having to do this.

      Thank you,

      Irma
    • Sue K.
      Irma, Our daughter was 8 when she ended up with an ileostomy.  She has a form of psuedo obstruction, so was constantly in a state of constipation prior, and
      Message 2 of 8 , Mar 3, 2012
        Irma,
        Our daughter was 8 when she ended up with an ileostomy.  She has a form of psuedo obstruction, so was constantly in a state of constipation prior, and ended up with a full bowel obstruction and lost her entire colon.  The ileostomy has been life changing in a very positive way!  She is able to eat more, much more active because she is not constantly feeling lousy, and we can manage her digestive issues far more proactively now.  She is 17 and a junior in high school - an active girl scout, goes to school full time, has volunteered for an animal rescue from time to time, goes to camp every summer and rides horses.... It truly HAS been a good thing!  Takes a little getting used to, but it was indeed a blessing.
        Sue

        --- On Sat, 3/3/12, isessums <isessums@...> wrote:


        From: isessums <isessums@...>
        Subject: [The Ileostomy Group] Ileostomy Possibility
        To: ileostomy@yahoogroups.com
        Date: Saturday, March 3, 2012, 12:23 AM


        Hi,

        I'm 58 years old and looking at the possibility of having to have an ileostomy.  Those of you that have one, has it been a pain or was it worth it? 

        I have suffered through a partially working colon, non-functioning colon due to medication that I need to take for a rare medical condition
        and having to use every laxative and enema under the sun for a bowel movement.  I'm just wondering if the ileostomy really would make life easier and better and how does it affect everyday life, especially, travel, being able to eat and not worrying if you have to spend a day in the bathroom just to make some room in the gut.

        Any tips of things to look for and how it has affected different people is much appreciated.  I am scared to death of having to do this.

        Thank you,

        Irma



        ------------------------------------

        The Ileostomy Group is part of Crohn's Zone IBD Network at www.crohnszone.org

        |Ostomy Forum: http://www.crohnszone.org/index.php?name=PNphpBB2&file=viewforum&f=4

        |Ostomy Chat: http://www.bowelweb.com/chat.htmlYahoo! Groups Links





        [Non-text portions of this message have been removed]
      • rodirtor
        Hi Irma, I ll be 58 at the time of surgery later this year. I have been doing a lot of reading on this topic as I have a choice of either an ileostomy or
        Message 3 of 8 , Mar 3, 2012
          Hi Irma,
          I'll be 58 at the time of surgery later this year. I have been doing a lot of reading on this topic as I have a choice of either an ileostomy or connecting my ileum to a diseased rectum. My situation is a bit different than yours (polyposis) in that there is nothing wrong with how my colon functions right now.
          In my reading, I have come across many others who have had their colons removed for the same reason as you and invariably they seem to be rejoicing. I guess they just feel better and feel that their lives have come back to them.
          Hope others are able to offer you something more. brad

          --- In ileostomy@yahoogroups.com, "isessums" <isessums@...> wrote:>
          > Hi, I'm 58 years old and looking at the possibility of having to have an ileostomy. Those of you that have one, has it been a pain or was it worth it?
          > I have suffered through a partially working colon, non-functioning colon due to medication that I need to take for a rare medical condition and having to use every laxative and enema under the sun for a bowel movement. I'm just wondering if the ileostomy really would make life easier and better and how does it affect everyday life, especially, travel, being able to eat and not worrying if you have to spend a day in the bathroom just to make some room in the gut.
          >
          > Any tips of things to look for and how it has affected different people is much appreciated. I am scared to death of having to do this. Thank you,> Irma
          >
        • cyndybradfield@charter.net
          With the ileostomy the ileum releases fluid continuously I have not had any difficulty with movement I know you can slow it down with marshmallows and bananas
          Message 4 of 8 , Mar 3, 2012
            With the ileostomy the ileum releases fluid continuously I have not had
            any difficulty with movement I know you can slow it down with
            marshmallows and bananas were bothersome early on. It will be 3 years
            for me in August. I'm used to the routine. I went back to teaching
            although I wish I could've stayed home. You develop routines although I
            had a hard time with leakage in the beginning. I did gain a lot of
            weight though. I haven't developed a great physical routine as my school
            hours and work travel time eat up my time. Getting in some walking which
            helps my attitude. I'm planning for retirement (I'm 55) I can retire at
            60 with my full benefits from my teaching. Really though it does give
            you back control I can go a whole school day without emptying my
            appliance, although the Hernias press on my bladder. So I have to
            urinate fairly often depending on how many coffees I had for breakfast.
            All in all life can be pretty normal, I'm not married to Mr. outdoors so
            it doesn't keep me from doing what I want I still garden, I can swim. I
            don't soak in the tub as much as I used to as I usually end up changing
            my bag from the adhesive coming loose. I tried to paint you a day to day
            picture did it work? Good luck the surgury can be rough depending on
            your mind frame I had complications that you won't. Endometriosis
            lesions attached to the colon made for a messy long traumatic to the
            body surgury and painful recovery. Aren't you glad you're not a woman?
            You have half as much to worry about. Go for the ileostomy, when given
            the choice with possible more surgury if my rectum diseased I said no to
            the rectum. I only missed it at first. You can give up being anal
            retentive it's great. Again good luck. It'll improve you quality of life
            you get to choose a convenient bathroom break. Cyndy

            On Sat, Mar 3, 2012 at 7:51 AM, rodirtor wrote:

            Hi Irma,
            I'll be 58 at the time of surgery later this year. I have been doing a
            lot of reading on this topic as I have a choice of either an ileostomy
            or connecting my ileum to a diseased rectum. My situation is a bit
            different than yours (polyposis) in that there is nothing wrong with how
            my colon functions right now.
            In my reading, I have come across many others who have had their colons
            removed for the same reason as you and invariably they seem to be
            rejoicing. I guess they just feel better and feel that their lives have
            come back to them.
            Hope others are able to offer you something more. brad

            --- In ileostomy@yahoogroups.com
            <javascript:parent.wgMail.openComposeWindow('ileostomy@yahoogroups.com')>
            , "isessums" <isessums@...> wrote:>
            > Hi, I'm 58 years old and looking at the possibility of having to have
            > an ileostomy. Those of you that have one, has it been a pain or was
            > it worth it? I have suffered through a partially working colon,
            > non-functioning colon due to medication that I need to take for a rare
            > medical condition and having to use every laxative and enema under the
            > sun for a bowel movement. I'm just wondering if the ileostomy really
            > would make life easier and better and how does it affect everyday
            > life, especially, travel, being able to eat and not worrying if you
            > have to spend a day in the bathroom just to make some room in the gut.
            > Any tips of things to look for and how it has affected different
            > people is much appreciated. I am scared to death of having to do
            > this. Thank you,> Irma


            <javascript:parent.wgMail.openComposeWindow('ileostomy@yahoogroups.com')>
            <http://docs.yahoo.com/info/terms/>


            [Non-text portions of this message have been removed]
          • cyndybradfield@charter.net
            Oops Irma thought you were a man, still I agree with Sue I was 52 when I had my surgury and was back to work in 4 and a half months. Life is good and still
            Message 5 of 8 , Mar 3, 2012
              Oops Irma thought you were a man, still I agree with Sue I was 52 when I
              had my surgury and was back to work in 4 and a half months. Life is good
              and still goes on. Do you have good family support. Hubby and all it's
              important to help you through it. Good luck. Cyndy

              On Sat, Mar 3, 2012 at 7:18 AM, Sue K. wrote:

              Irma,
              Our daughter was 8 when she ended up with an ileostomy.  She has a form
              of psuedo obstruction, so was constantly in a state of constipation
              prior, and ended up with a full bowel obstruction and lost her entire
              colon.  The ileostomy has been life changing in a very positive way! 
              She is able to eat more, much more active because she is not constantly
              feeling lousy, and we can manage her digestive issues far more
              proactively now.  She is 17 and a junior in high school - an active girl
              scout, goes to school full time, has volunteered for an animal rescue
              from time to time, goes to camp every summer and rides horses.... It
              truly HAS been a good thing!  Takes a little getting used to, but it was
              indeed a blessing.
              Sue

              --- On Sat, 3/3/12, isessums < isessums@...
              <javascript:parent.wgMail.openComposeWindow('isessums@...')> >
              wrote:

              From: isessums < isessums@...
              <javascript:parent.wgMail.openComposeWindow('isessums@...')> >
              Subject: [The Ileostomy Group] Ileostomy Possibility
              To: ileostomy@yahoogroups.com
              <javascript:parent.wgMail.openComposeWindow('ileostomy@yahoogroups.com')>
              Date: Saturday, March 3, 2012, 12:23 AM

              Hi,

              I'm 58 years old and looking at the possibility of having to have an
              ileostomy.  Those of you that have one, has it been a pain or was it
              worth it? 

              I have suffered through a partially working colon, non-functioning colon
              due to medication that I need to take for a rare medical condition
              and having to use every laxative and enema under the sun for a bowel
              movement.  I'm just wondering if the ileostomy really would make life
              easier and better and how does it affect everyday life, especially,
              travel, being able to eat and not worrying if you have to spend a day in
              the bathroom just to make some room in the gut.

              Any tips of things to look for and how it has affected different people
              is much appreciated.  I am scared to death of having to do this.

              Thank you,

              Irma

              ------------------------------------

              The Ileostomy Group is part of Crohn's Zone IBD Network at
              www.crohnszone.org

              |Ostomy Forum:
              http://www.crohnszone.org/index.php?name=PNphpBB2&file=viewforum&f=4
              <http://www.crohnszone.org/index.php?name=PNphpBB2&file=viewforum&f=4>

              |Ostomy Chat: http://www.bowelweb.com/chat.htmlYahoo
              <http://www.bowelweb.com/chat.htmlYahoo> ! Groups Links

              [Non-text portions of this message have been removed]

              <http://www.bowelweb.com/chat.htmlYahoo>
              <http://docs.yahoo.com/info/terms/>


              [Non-text portions of this message have been removed]
            • William Hiel
              Irma I m a 47 yr old guy who had to have one at 40. Urine only. But my doc calls it a ileostomy & i ve heard mine called a urostomy. It wasn t scary, for me
              Message 6 of 8 , Mar 3, 2012
                Irma

                I'm a 47 yr old guy who had to have one at 40. Urine only. But my doc calls it a ileostomy & i've heard mine called a urostomy.


                It wasn't scary, for me per se. Just sad.

                Be well

                 
                LIVE 4 LOVE


                ________________________________
                From: isessums <isessums@...>
                To: ileostomy@yahoogroups.com
                Sent: Friday, March 2, 2012 9:23 PM
                Subject: [The Ileostomy Group] Ileostomy Possibility

                Hi,

                I'm 58 years old and looking at the possibility of having to have an ileostomy.  Those of you that have one, has it been a pain or was it worth it? 

                I have suffered through a partially working colon, non-functioning colon due to medication that I need to take for a rare medical condition
                and having to use every laxative and enema under the sun for a bowel movement.  I'm just wondering if the ileostomy really would make life easier and better and how does it affect everyday life, especially, travel, being able to eat and not worrying if you have to spend a day in the bathroom just to make some room in the gut.

                Any tips of things to look for and how it has affected different people is much appreciated.  I am scared to death of having to do this.

                Thank you,

                Irma



                ------------------------------------

                The Ileostomy Group is part of Crohn's Zone IBD Network at www.crohnszone.org

                |Ostomy Forum: http://www.crohnszone.org/index.php?name=PNphpBB2&file=viewforum&f=4

                |Ostomy Chat: http://www.bowelweb.com/chat.htmlYahoo! Groups Links



                [Non-text portions of this message have been removed]
              • I Sessums
                Thank you for your input.   Irma ________________________________ From: Sue K. To: ileostomy@yahoogroups.com Sent: Saturday, March 3, 2012
                Message 7 of 8 , Mar 4, 2012
                  Thank you for your input.
                   
                  Irma


                  ________________________________
                  From: Sue K. <ma2mje@...>
                  To: ileostomy@yahoogroups.com
                  Sent: Saturday, March 3, 2012 5:18 AM
                  Subject: Re: [The Ileostomy Group] Ileostomy Possibility



                   

                  Irma,
                  Our daughter was 8 when she ended up with an ileostomy.  She has a form of psuedo obstruction, so was constantly in a state of constipation prior, and ended up with a full bowel obstruction and lost her entire colon.  The ileostomy has been life changing in a very positive way!  She is able to eat more, much more active because she is not constantly feeling lousy, and we can manage her digestive issues far more proactively now.  She is 17 and a junior in high school - an active girl scout, goes to school full time, has volunteered for an animal rescue from time to time, goes to camp every summer and rides horses.... It truly HAS been a good thing!  Takes a little getting used to, but it was indeed a blessing.
                  Sue

                  --- On Sat, 3/3/12, isessums <isessums@...> wrote:

                  From: isessums <isessums@...>
                  Subject: [The Ileostomy Group] Ileostomy Possibility
                  To: ileostomy@yahoogroups.com
                  Date: Saturday, March 3, 2012, 12:23 AM

                  Hi,

                  I'm 58 years old and looking at the possibility of having to have an ileostomy.  Those of you that have one, has it been a pain or was it worth it? 

                  I have suffered through a partially working colon, non-functioning colon due to medication that I need to take for a rare medical condition
                  and having to use every laxative and enema under the sun for a bowel movement.  I'm just wondering if the ileostomy really would make life easier and better and how does it affect everyday life, especially, travel, being able to eat and not worrying if you have to spend a day in the bathroom just to make some room in the gut.

                  Any tips of things to look for and how it has affected different people is much appreciated.  I am scared to death of having to do this.

                  Thank you,

                  Irma

                  ------------------------------------

                  The Ileostomy Group is part of Crohn's Zone IBD Network at www.crohnszone.org

                  |Ostomy Forum: http://www.crohnszone.org/index.php?name=PNphpBB2&file=viewforum&f=4

                  |Ostomy Chat: http://www.bowelweb.com/chat.htmlYahoo! Groups Links

                  [Non-text portions of this message have been removed]




                  [Non-text portions of this message have been removed]
                • Pat Connaughan
                  Hi Irma I have had an ileostomy for over 7 years now. Mine is the result of resection surgery because of Crohn s Disease. As far as I m concerned, it is the
                  Message 8 of 8 , Mar 6, 2012
                    Hi Irma



                    I have had an ileostomy for over 7 years now. Mine is the result of
                    resection surgery because of Crohn's Disease. As far as I'm concerned, it
                    is the best thing that has happened to me. I won't lie - it did take me
                    awhile to get used to it but I think that had a lot to do with the fact
                    that when I went into surgery I didn't expect to wake up with one.



                    Having the ostomy has literally changed my life. There are very few
                    limitations. The one thing I have noticed is that I have to be careful
                    about what pants I wear. They are rather large on the top for the rest of
                    me. I have to make sure that they have some stretch in them and that they
                    aren't too tight. If they are, I sometimes it appears that I have a rather
                    large lump on my leg from where my bag is. I have also noticed that if they
                    are too tight, the liquid in the bag is sometimes pushed to the top of the
                    bag and I end up with a leak. That doesn't happen too often though because
                    I tend to pay more attention to the amount of the bag contents than I
                    usually do.



                    When I travel, I always carry a bag with everything in it that I would need
                    if I had a leak. I have even devised a way to temporarily patch a leak
                    until I get to a place where I can do a complete change. I am slightly
                    restricted in what I eat both because of the Crohn's but also because I am a
                    Type 2 diabetic. Other than that I live a perfectly normal life.



                    When I had the first one done it was just temporary. I went back in a year
                    later to have it reversed but due to complications, I had to have another
                    temporary one. That is where I sit right now. My surgeon wants to try
                    another reversal but I want it made permanent. None of my other doctors
                    want me to try another reversal and I don't want to go that route now
                    either. So I guess I'm stuck with one that is "permanently temporary".



                    I don't blame you for being scared. Just the thought of any kind of surgery
                    scares the daylights out of me. Even just having day surgery scares me and
                    having an ostomy done is major surgery. You have a right to be scared but
                    once it is done and you are back on your feet you'll probably wonder why you
                    were so worried. I'm sure others in the group will tell you the same thing.



                    Pat in Ontario



                    [Non-text portions of this message have been removed]
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