Ileostomy fears

Akroger
Akroger Member Posts: 88
in Colorectal Cancer #1

I've been posting on this forum for my mom, who is 57 years old and has stage IV cancer and was diagnosed in February. She just got amazing news from the oncologist this week after her cat-scan - her liver tumors have shrunk dramatically, and are now controllable, while her lung tumors are completely gone. Due to high inflammation continuing from the radiation, they were unable to check her colon itself. But basically, she's gone from a prognosis of 1 year to a likelihood that she'll be living well past 5!

There's one problem though; because of her continuing severe pain in her rectal area, which is intensified by the radiation damage, she will need an ileostomy. And in spite of the fact that she knows this means a release from the past 6 months of suffering she's had, she's pretty terrified about it.

I have been talking myself blue in the face about all the good things that will come of this surgery (scheduled for Thursday) - her lack of pain, the lack of need for painkillers that make her constantly tired and drowsy and dizzy, her ability to walk and do things again, in contrast to resting on the couch in pain all day - and it's not helping. She's having a hard time accepting the fact that she will need to have a pouch that collects her body's wastes, and how that will change her life and the way she sees herself. I tell her that she will adjust and get used to it, but she can't see that right now. Please - I'm looking for good stories, happy stories, life-changing stories, and even just stories about how it's really NOT AS BAD as she's convinced it will be. Any comments and support from everyone here will be very much appreciated!

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
    Can live well with an ostomy

    I have had a perm colostomy for 3 years.  While there are some differences, the whole pouch for waste is there.

    I recommend the following:

    The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies

    Barbara Dorr Mullen and Kerry Anne McGinn RN BSN OCN

     

    It was recommended by my ostomy nurse. It is an excellent source for the person just starting out. It was written by a mother who has an ostomy and her daughter who is an ostomy nurse. You may find it at your library, but definately on Amazon or perhaps at the local book store.Barbara Dorr Mullen (Author)

    Marie who loves kitties

    › Visit Amazon's Barbara Dorr Mullen Page

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  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #3
    By word of mouth

    My freinds next door neighbour in England, had his anus sewed up and a colostomy bag.  As far as I can see, he is a healthy, active man. I have not talked to him about it (I mean, you just don't go up to someone and ask them about their sewed up anus), but my friend says he's all over the place and you wouldn't know he has been through such a trial. 

    I know its not first hand experience but I thought I'd share.

  • John23
    John23 Member Posts: 2,122 Member
    #4
    AKroger –

     

    The United Ostomy Association forum is about the best place to learn more about having an Ostomy.

    https://www.ostomy.org/forum/viewforum.php?f=2&sid=1f6dc675384587b6557343c959905380

     

    Good luck,

     

    John

  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #5

    It is impossible to determine exactly what your mother's experience with an ostomy will be, but I can say without a doubt that having an ileostomy and being here, seeing my grandkids grow up, spending time with my wife, kids and family is pretty awesome.  Some days are harder than others, but most are pretty normal.  Maybe not everyone's normal, but normal enough.

    I pretty much do whatever I want, when I want to do it, within the normal constraints of cost, time and availability.  Since getting an ostomy I have seen five grandkids added to the family, a bunch of weddings, including my youngest son's and have done many "normal" things like hiking, swiming, running, playing with the grandkids.  I travel when time, finances and occasion permit.  I eat pretty much whatever I want when I want.  My favorite saying from my doctor is, "You can eat anything you want as long as you are willing to live with the concequences."  In the case of an ostomy some concequences could be pretty severe, but so can the consequences of eating lionfish.

    Tell your mom, life is better with her than without her.  Life is Good!

     

    best wishes

    rick

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
    Ostomy

    Having an ostomy is not as bad as it sounds.  Only having a temporary ileostomy sometimes after the reconnect I've been tempted to have it permanent.  Sure it is a hassle changing pouches, ordering supplies, a possible leak, but all in all it is just a new normal now that would replace a bad situation and could save her life.  My husband was still attracted to me as he was before the ileostomy.  It's something that shouldn't be feared but researched.  John23 can give you the ostomy webesite if he hasnt already. 

    Kim

  • thelomitian
    thelomitian Member Posts: 4
    #7
    Been There

    Greetings.  I was dianosed with rectal cancer in October, 2010.  I was told that the location of my tumor was close to my anus.  My doctor recommended that if she were to remove my sigmoid colon, rectum and anus I would reduce the odds of the cancer returning from 50 percent to 10 percent.  She told me I would have a permanent colostomy "but I would be able to live".  Recurrence cancer is much more aggresive and deadlier.  It was an easy decision for my wife and I to make.  I had so much to live for.  I had surgery to remove the organs and to create an ostomy.  It was a very big adjustment at first but before long I got use to it with a lot of help from my wife and my ostomy nurse.  Your mom will have an ostomy nurse who will help her a lot.  There are really good ostomy support groups on line.  Also, there are local support groups through out the country that meet on a regular basis.  She won't have to feel like she's the only one with an ostomy. You learn to take your ostomy supplies with you wherever you go.  Most of my life has not been affected.  I still walk 3 miles every day, enjoy going out to eat, to the movies, playing with my grandson, etc. 

    I hope things go well for your mom.  Like you say, her life will be more enjoyable and without the pain and dizziness.  Prayers and best wishes for both of you.

  • Akroger
    Akroger Member Posts: 88
    #8
    Thank you, very helpful

    John, Rick, Kim, and everyone else who has offered advice, thank you so much. I've already ordered The Ostomy Book for my mom, and the new discussion forum is also helpful. I get a lot of strength from all the stories and comments here, because I am then able to share those stories with my mom and provide her with comfort. That's one of the best things I can do for her now, so I am truly grateful to everyone here for that.

    Surgery on Thursday, with an expected hospital stay of 4-5 days. Thankfully I will be able to be by her side for most of that period.

  • danker
    danker Member Posts: 1,276 Member
    #9
    Akroger said:

    Thank you, very helpful

    John, Rick, Kim, and everyone else who has offered advice, thank you so much. I've already ordered The Ostomy Book for my mom, and the new discussion forum is also helpful. I get a lot of strength from all the stories and comments here, because I am then able to share those stories with my mom and provide her with comfort. That's one of the best things I can do for her now, so I am truly grateful to everyone here for that.

    Surgery on Thursday, with an expected hospital stay of 4-5 days. Thankfully I will be able to be by her side for most of that period.

    Akroger

     

    I only had a bag for my ileostomy for about 6 weeks when I had the ileostomy reversed. Living with the bag waas fine after I got used to it.  Good thing, 

    because I developed a fistula and needed the bag for about 4 more weeks. My fistula healed itself from the inside out.  Living with a bag is very doable.

    Good luck to you both.

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