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kinda personal...but anyone had an ileostomy before?? im getting really down...


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#1 Michelle

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    Posted 28 October 2008 - 05:41 PM

    hey ladies...

    so ive got a temporary ileostomy (bag on my side which waste goes to since i just had colon surgery and everything in me needs a chance to heal) and im hoping some people on here have had one, have one, or know someone with one...im getting really down and frustrated with it and just am hoping there are people here that can help me through this.... thanks!

    #2 Alyssa

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      Posted 28 October 2008 - 06:20 PM

      hey Michelle,

      My grandmother (dad's mom) who passed 2 years ago at the age of 87 had one.

      I grew up with her - she lived with my parents from the time i was 5 until she passed.

      she had the bag permanently put on when she was in her 40's.

      talk to me - what are you dealing with? i know things are a bit more advnaced that what she had but am familiar with the bags, and the accruements.

      #3 Michelle

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        Posted 28 October 2008 - 06:24 PM

        thanks so much for answering Alyssa! its nice not to feel alone in this...

        im just hating the feeling of having it..it gets heavy and some days my skin just burns under that sticky thing on my skin sometimes that i cry myself to sleep some nights its no fun and im nervous to leave the house ( i havent since my surgery 5 weeks ago) because im scared of leaks or getting bad pains or something and being far from home...i dunno i just feel so wierd having it and i cant sleep flat with it because it hurts so ive had to sleep sitting up on the couch and its driving me crazy

        #4 Alyssa

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          Posted 28 October 2008 - 06:31 PM

          Quote:
          Originally Posted by Michelle
          thanks so much for answering Alyssa! its nice not to feel alone in this...

          im just hating the feeling of having it..it gets heavy and some days my skin just burns under that sticky thing on my skin sometimes that i cry myself to sleep some nights its no fun and im nervous to leave the house ( i havent since my surgery 5 weeks ago) because im scared of leaks or getting bad pains or something and being far from home...i dunno i just feel so wierd having it and i cant sleep flat with it because it hurts so ive had to sleep sitting up on the couch and its driving me crazy

          sure Michelle! i am sorry you are going through this and i know how hard it must have been to even reach out to us on here ! i am thinking that while you are getting used to it, you could take 2 back-up 'changes' with you in a bag and get out of the house.
          maybe also do more frequent changes to alleviate some of the weight.
          do you have a 'do not eat food list'? also - i know my grandma avoided a lot of stuff. the foods have a lot to do with avoiding leaks and pains.

          also, you should order one of those body pillows that a lot of pregnant women use and start sleeping on your other side -this will prop you up. if you are not getting good nights sleep you are not going to feel like yourslef - you need to get that ASAP.

          it's ok to feel scared and uncomfortable, this is a big change - just start trying things a little bit at a time. how about just going out for a coffee with FI - somewhere close by?

          #5 jajajaja

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            Posted 28 October 2008 - 06:32 PM

            UOAA Discussion Board :: View Forum - General Ostomy Discussion
            I can't help Michelle, but I found a forum that might offer support and tips!
            Happily married since 2008

            #6 Hartyt509

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              Posted 28 October 2008 - 06:34 PM

              My cousin has had one for about 10 years or more. She's in her early 40s now i think.

              She said it was really hard to deal with at first and she has had to have it resited a couple of times but she says she hardly notices it now.

              She has 2 kids also and has only had those since her op.

              It's early days it has to get better and if its only temporary there is light at the end of the tunnel xx

              #7 Michelle

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                Posted 28 October 2008 - 06:37 PM

                Alyssa those are such good ideas! do you know where to get that pregnancy pillow?? it sounds like something that would help me so much so ill get one ASAP! and going out for coffee with my FI is a good thing to do too...just a little adventure out of the house would be so nice :) BAHHH it just started burning as i type this its brutally painful sometimes to the point where i have trouble breathing

                #8 Michelle

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                  Posted 28 October 2008 - 06:39 PM

                  Rach thanks so much for that discussion board :)

                  and Harty its good to know that after a while i will probably just barely notice having it....and ya its only temporary...i probably will have the surgery to have it taken away right around christmas...i have a doctors appt in two weeks to pick a time for surgery...so im gonna beg and plead with my doctor to make it as soon as possible lol ill frigging skip into that operating room lol

                  #9 Alyssa

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                    Posted 28 October 2008 - 06:46 PM

                    Quote:
                    Originally Posted by Michelle
                    Alyssa those are such good ideas! do you know where to get that pregnancy pillow?? it sounds like something that would help me so much so ill get one ASAP! and going out for coffee with my FI is a good thing to do too...just a little adventure out of the house would be so nice :) BAHHH it just started burning as i type this its brutally painful sometimes to the point where i have trouble breathing

                    Michelle,
                    I don't know if they deliver to CA but here are some links to give you an idea and get started...

                    Hypoallergenic Snoozer Full Body Pillow - Zonk Designs, ZSZR1001

                    Body Pillow, Maternity Pillow, Pregnancy Pillow, Comfort U Full Body Support Pillow, Bed Pillows, Neck Pillows, Contour Pillow, Bed Wedge, Knee Pillow, Back Support Pillow, Snoozer, Snoogle, Bean, Tempurpedic, Down, Silk Sheets, Bedloune Reading Pill

                    as for the pain and burning - did you ask your Dr. if there are any topical creams you can use for that? maybe like a lidocaine (temp numbing cream) - also make sure you are using hypo-allergenic soap and lotions in that area - nothing scented.

                    maybe you could take a benadryl too?

                    #10 Michelle

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                      Posted 28 October 2008 - 06:50 PM

                      thanks for those sites! ill see if they will deliver to me up in the big white north! lol....ya for the burning i was thinking of asking my home care nurse on thursday when she comes over about a numbing cream...im hoping i can use one! honestly thank you so much for helping me with this




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