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Thread: My mom's recent diagnosis

  1. #1
    Newbie New User
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    My mom's recent diagnosis

    My mom was just diagnosed with colorectal cancer. On January 6, she will be having surgery to remove her rectum and will have a permanent colostomy. She is having difficulty dealing with this news, as she is afraid that having a colostomy will seriously negatively affect her quality of life.

    Does anyone here have a permanent colostomy? Are there things you just can't do? I want to be able to give examples next time she brings it up.

    Thanks for all your help.

  2. #2
    Senior User swisecar's Avatar
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    I have never personally had a colostomy, but I know numerous people who have. Several on this forum will be able to speak about their own experiences. I have a friend whose dad had colitis for over 20 years. His doctor had been recommending removal of his colon (colectomy) with a perminant colostomy for years. After he finally had to have the procedure, he told me that he wished he had done it years earlier. In his case he had lived through years of pain and discomfort because of his disesase. Now he has no more pain. Before the colectomy and colostomy he had always wanted to stay at home because of the unpredictability of his bowels. The coloctomy and colostomy meant more freedom for him.

    Yes, there will be issues with the colostomy at first. A nurse will walk your mother through how to care for her colostomy. As far as limiting activity, I think that is mostly up to your mother. I think that DulcimerGal (a member on this forum) has kayaked after having a colostomy (help me on my facts here DulcimerGal).

    All the best to your mother and her wonderully supportive family,
    Sarah
    May 1988 acute lymphoblastic leukemia (2 yrs chemo & radiation)
    Sept 2009 papillary thyroid cancer (thyroid removal & radioactive iodine)
    Sept 2009 colon cancer stage IIIC (removal of sigmoid colon & resection)
    Oct 2009-May 2010 FOLFOX6
    July 2010 stage IV colon cancer, irinotecan & avastin
    Dec 2010-July 2011 avastin maintenance
    Sept 2011 tumor removal involving small bowel resections
    Nov 2011-April 2012 resume irinotecan
    May 29 2012 begin radiation treatments 15 total
    current age: 28

  3. #3
    Super Moderator Top User sheila's Avatar
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    staying strong- I just got done responding to your other post-ha and here you are- Its totally normal for your mom to worry-moms had one since diagnosis 5years 8mo ago. It was suppose to be temporary but after her second surgeruy it wasnt possible to reverse it. just as well because she was just starting to get use to it and she had more surgeries after that which would have made the reversal and the second round colostomy 2 extra unecessary surgeries.
    Its a huge adjustment at first because the bowels have to get accostomed to new a route.
    depending on how much is removed above the rectum depends on her diet.-my mom has extremely minimal large intestine lft so she cannot eat grainns and fibers -but if your mom has enough functioning large intestines left behind she will have fewer problems. Adustment takes a month or so. once she knows how things are working she will be able to control most of the problems that may arise -dont look too far into it because it will discourage her.-she may not have 1/2 the problems that are possible- like the side effects on a drug- some peop;le get none. some have alot and some get minimal- so take it as it comes- deal with each step of the way seperate aand it wont be quite as overwhelming.
    for now- lets get her throug the surgery-hear what her doctor says then work on recovery its a long slow process-thats what make things hard the wait and wonder and worry.
    but we will be here for her(for you).
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  4. #4
    Super Moderator Top User sheila's Avatar
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    Jul 2008
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    I forgot to add- they will not send her home untill they see she is able to grasp the concept of "the bag"
    then they will send a followup visiting nurse untill she will be confident enough to handle things herself- they do not leave you stranded-and they were very patient and caring. tell her not to worryabout that.
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  5. #5
    Senior User Buzzard's Avatar
    Join Date
    Sep 2011
    Location
    Western United States
    Posts
    454

    Colostomy-there are worst things in life, trust me.

    I have had a permenent colostomy since March of 08. I'm not going to lie, it can be a bit of a pain sometimes-like when you are changing your appliance and your intestines decide to send liquid "output" flying three feet across the carpet. But in terms of what your are able to do, it does not have to infringe that much. I have worked full time-including over two years at a job where I was on my feet 10 hours a day when I wasn't scrunched under a car, work out at a gym, go swimming on a regular basis, and in 2010 backpacked 40 miles over six days in the Uinta wilderness of Utah.
    So while there are definitely adjustments to be made, and if I had my druthers, I would have my plumbing back the way God made it. (I do miss long reading sessions in the throne room). But at least for me, it sure beats the alternative of being dead from cancer.
    If you want to read some lively discussion on everything from getting frisked by TSA agents to bitter arguments on Hollister vs. Convatec vs. Coloplast, check out the discussion board over at ostomy.org.
    DX with Lung Carcinoid Tumor 12/04
    Double Lobectomy 3/05
    DX with Rectal Cancer 12/26/07 Merry Christmas!
    Radiation/Chemo 1/08
    Rectal Resection 3/08, permanent colostomy. Stage 2C
    More chemo 5/08
    Chemo fries bone marrow, 9 days in hospital isolation 7/08
    Recurrence confirmed in pelvic region 12/09
    Tumor radiated with Cyberknife treatment 3/10
    Recurrence/metastasis in pelvis/abdomen 11/10
    Xeloda/Avastin 12/10 to 01/13
    Progression to lungs found 1/13
    Erbitux 01/13 to 01/14
    Acute renal failure, six days in hospital, all chemo stopped for now, 11/13
    Restarted Erbitux, lower dose 12/13
    Kidney function dips again, chemo suspended again. 2/14
    New chemo regimen of low-dose Irrenotecan started 4/14.
    Further progression into lungs, chemo halted, referred to Huntsman Cancer Center for possible clinical trials.
    Sounds like a lot of fun, doesn't it?

 
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