Question

BonnieR
BonnieR Member Posts: 1,526 Member
edited March 2014 in Ovarian Cancer #1
God's morning to all!

Another Carbo treatment and on the mend, actually the last carbo I am doing.. but that is a whole different issue.

I am not sure how many deal with this, but several years back I was diagnosed with neuropathy of the colon. It was managable because I also dealt with constipation. This past year I have been blessed with diarhea instead; so now I have many accidents. I saw a colorectal surgeon last month and now have a follow up visit with her on the 5th.

If I opt for the surgery one of the three things could happen, 1. I wake with and have a colostomy 2. I wake up and have an ileostomy 3. I wake up and they couldn't do either because the cancer has sheeted my intestines too much.

I know if it wasn't for the cancer I would do the procedure, I am tired of not being able to go to far from the bathroom on the days the diarhea isn't controlled. But I do have cancer and a part of me is nervous about being off chemo long enough to heal, about giving up quanity for quality, about my body being strong enough to survive the surgery... as you can see the list is long. I was told no cancer would be removed ~ they would get in and out and try not to disturb much while in there.

How many women here already have an ostomy and how much of a hassle is it? If you don't mind sharing. I volunteer for a prison ministry and we are locked in the sandstone chapel for 14 hours a day when we work a weekend. I am wondering if this would still be doable.

Of course I did leave my oncologist a list of questions that the surgeon couldn't answer. The cancer has infiltrated my rectum wall so I am wondering if eventually this surgery would have to be done anyway, also concerned about healing issues and of course being off chemo long enough to heal.

UGH... that is all my brain can process for now, still recouping from last treatment.

Thank you for your replies. Prayers ♥ Hugs Bonnie

Comments

  • LPack
    LPack Member Posts: 645
    #2
    I don't know
    Bonnie,

    I cannot answer you because I have not been there. But know I am lifting you up in my prayers.

    Wow, it is so amazing what cancer can do to our bodies. So glad our minds are still sharp! Mine is isn't it?? ☺

    Love you teal warrior,
    Libby
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #3
    illeostomy
    I had an illeostomy as part of my initial debulking. An illeostomy is higher up so it is mostly liquid. After learning the initial care involved it wasn't too bad. I had a lot of skin irritation issues. And with the stool being liquid, this just made things worse. A lot of my problem had to do with my stoma (the part of the colon that protrudes through the abdomen wall). My stoma did not stick out. It was actually flush with my abdomen. I don't know how this happened. Partly the surgeon partly how my body healed? Well because of this problem I had lots of pain and bleeding where the skin was irritated. No matter how much of the ostomy powder I put on my skin was raw. I don't know how common it is having a non-protruding stoma. Since an illeostomy is watery stool it would seep under the seal and BURN my raw skin. It progressively got worse so I couldn't wait to have it reversed. I know another woman who had an illesotomy the same time I did and she did not have any of these skin issues. Besides the skin issues it really wasn't bad at all. You can swim...although I never did. I don't know if you can bathe. I do LOVE to take a bath and I did miss soaking in the tub. After my ostomy was reversed I had uncontrollable diarrhea....and accidents. I can relate!!! Oh, another thing. The stool in the ostomy smells REALLY bad. I don't know why...maybe because there is a lot of gastic fluids in there. If I HAD to empty my ostomy in a public bathroom I would hear people commenting on the smell....it was that bad. They do sell a liquid you can put in your ostomy bag to help with the odor. I think a colostomy would be easier to manage. The stool is formed, not liquidy. About an hour of so after you eat you could expect your illeostomy bag to start filling. I think with a colostomy it is more like having a regular bowel movement.

    My illesotomy was reversed after 5 months...if Feb. 09.

    Good luck. I wish you well. It is good to see you post. I've been wondering how you've been.
  • saundra
    saundra Member Posts: 1,370 Member
    #4
    Thanks
    Thank you, Bonnie, for asking the questions. I'll be interested in the feedback as I see the colon/rectal surgeon tomorrow in Dallas for the first visit. My gyn/onc said that we could expect a colonoscopy to be scheduled so I don't expect this to be much but an intake appt.. and scheduling. (((Hugs♡and Prayers✝)))
    Saundra
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #5
    nancy591 said:

    illeostomy
    I had an illeostomy as part of my initial debulking. An illeostomy is higher up so it is mostly liquid. After learning the initial care involved it wasn't too bad. I had a lot of skin irritation issues. And with the stool being liquid, this just made things worse. A lot of my problem had to do with my stoma (the part of the colon that protrudes through the abdomen wall). My stoma did not stick out. It was actually flush with my abdomen. I don't know how this happened. Partly the surgeon partly how my body healed? Well because of this problem I had lots of pain and bleeding where the skin was irritated. No matter how much of the ostomy powder I put on my skin was raw. I don't know how common it is having a non-protruding stoma. Since an illeostomy is watery stool it would seep under the seal and BURN my raw skin. It progressively got worse so I couldn't wait to have it reversed. I know another woman who had an illesotomy the same time I did and she did not have any of these skin issues. Besides the skin issues it really wasn't bad at all. You can swim...although I never did. I don't know if you can bathe. I do LOVE to take a bath and I did miss soaking in the tub. After my ostomy was reversed I had uncontrollable diarrhea....and accidents. I can relate!!! Oh, another thing. The stool in the ostomy smells REALLY bad. I don't know why...maybe because there is a lot of gastic fluids in there. If I HAD to empty my ostomy in a public bathroom I would hear people commenting on the smell....it was that bad. They do sell a liquid you can put in your ostomy bag to help with the odor. I think a colostomy would be easier to manage. The stool is formed, not liquidy. About an hour of so after you eat you could expect your illeostomy bag to start filling. I think with a colostomy it is more like having a regular bowel movement.

    My illesotomy was reversed after 5 months...if Feb. 09.

    Good luck. I wish you well. It is good to see you post. I've been wondering how you've been.

    I have a lot of experience
    I have a lot of experience with a colostomy - just not my own. My grandson has a rare GI disease and has had two colostomies - the first performed when he was 48 hours old.

    The stoma is very sensitive. Nick's bled if it was even touched. His stuck out, though. The breaking down of surrounding tissue is a huge issue. Our goal became to keep each ostomy bag on as long as possible, so as to "save" his skin.

    We also had to dilate Nick's stoma daily - something his 19 year old mom just could not do, so I went over every evening and did it.

    The stool - or at least Nick's stool - was about the consistency of toothpaste - neither watery nor solid (both as an infant and later, when he was 8 or 9). And Nancy, you are so right about the smell - not just the stool, either, but the gas that collects in an ostomy bag, too, which you have to "burp" on occasion.

    We know a police officer on the motorcycle unit who has a permanent colostomy, so it can definitely be worked into virtually any situation.
  • NCEllen
    NCEllen Member Posts: 115
    #6
    saundra said:

    Thanks
    Thank you, Bonnie, for asking the questions. I'll be interested in the feedback as I see the colon/rectal surgeon tomorrow in Dallas for the first visit. My gyn/onc said that we could expect a colonoscopy to be scheduled so I don't expect this to be much but an intake appt.. and scheduling. (((Hugs♡and Prayers✝)))
    Saundra

    You can do it if needed
    Hi - I (like Nancy) had a temporary illeostomy resulting from a complication following the hysterectomy. I came home with a wound vac and the ostomy but was able to start chemo about 5 weeks after the initial surgery. I had the ostomy through the whole chemo and then had a reversal about 8 months later. My stoma was also flat against the abdomen which is especially hard to take care of - the surgeons really need to make those stomas easier to deal with. I had a wonderful ostomy nurse too who helped out trying to get the right wafers/bag etc. My one thing that I had to keep in mind was to stay hydrated due to loss of fluids (with an illeo anyway), but at the same time you have to eat to get the protein in to keep the iron level up. I was healing from that stupid wound since they had to go into the same incision twice after the initial surgery.

    I'm about 5 months out now from my reversal and doing much better at managing my 'new normal habits'. It's a hassle managing the diet which can be frustrating, but it is what it is and living with an ostomy can be done. Just learning new things all the time....I'm ready for recess.

    I found the following web sites for colon cancer survivors and the discussions were quite helpful:

    http://www.colonclub.com/

    also there is a link from that web site to the United Ostomy Associations of America -

    http://www.uoaa.org/

    for both of these web sites I went to the discussion boards. Seems like the CC members want to get the message out about colon cancer as much as we do with ovarian cancer. They are a great support group and gave me a whole new outlook on colon cancer. Good luck and prayers to you both Bonnie and Saundra - +++++ Ellen
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #7
    Bonnie
    I am so sorry to hear about the prospect of further treatment when you are probably so exhausted. It is true that no matter what we do now cancer has become part of us and defines who we are. I'm just beginning to see that now - been diagnosed Nov 2009 and I now know my life will be forever changed.

    I wish you lots of luck with your surgery & wish you didn't need to have it. You must be an angel to volunteer as a minister in a prison - a special calling.

    Take care love Tina xxxxx
  • kayandok
    kayandok Member Posts: 1,202 Member
    #8
    Bonnie,
    I've really missed your posts, thank you for sharing what is on your plate right now.

    I don't have any personal experience, although my very good friend began bleeding from a tumor invading the rectum wall, and had surgery and got a ileostomy. She had a few challenges and like the other gals mentioned the smell was an issue. Getting it reversed wasn't an option for her but gave her an additional year on her life.

    Hopefully, you will be able to gather good info and make a decision with confidence.

    Prayers for wisdom and direction for you today, Bonnie.
    Hugs,
    kathleen
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #9
    kayandok said:

    Bonnie,
    I've really missed your posts, thank you for sharing what is on your plate right now.

    I don't have any personal experience, although my very good friend began bleeding from a tumor invading the rectum wall, and had surgery and got a ileostomy. She had a few challenges and like the other gals mentioned the smell was an issue. Getting it reversed wasn't an option for her but gave her an additional year on her life.

    Hopefully, you will be able to gather good info and make a decision with confidence.

    Prayers for wisdom and direction for you today, Bonnie.
    Hugs,
    kathleen

    God Bless
    Thank you so much for the posts, they pour out with love, strength, hope, encouragement :-D You are the bestest of the best. Still waiting to hear from my Doc, I know they have many many patients but hoping today or tomorrow I get a call. Randy says do the surgery but I am still sitting on the fence ~ sure glad it has wide boards and not barb wire. LOL

    Anyway I well end with a quote from Gildna Radner: The goal is to live a full, productive life even with all that ambiguity. No matter what happens, whether the cancer never flares up again or whether you die, the important thing is that the days that you have had you will have lived.

    And now like I always say Live Life to Fullest ~ and that I try to do most days ~ that way the cancer can never win. :-D Yup living life to the fullest in-spite of cancer, treatments and sicky times in bed.

    Prayers ♥ Hugs Bonnie

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