New warrior

jimmyskinz
jimmyskinz Member Posts: 2 Member
edited April 2022 in Colorectal Cancer #1

I went in during the beginning of the covid pandemic thinking at age 44 i had my first hemorrhoid. Turns out it was stage 4 rectal cancer. Chemo, radiation, and surgery has me 8 months cancer free. 90% of my rectum was removed. Illeostomy for healing and now reconnected. Having a hard time back at work with frequent BM. Docs say 20 g of fiber a day but still seeing what foods limit my IBM. Anyone else?

Chicken and pasta have been the best but still somedays are rough. Any survivor advice? I have plenty of Mayo doc stuff but trial and error from others would be nice to hear. I have eliminated most sugar as recommended with lots of water.

Comments

  • StonedCamaro
    StonedCamaro Member Posts: 38 Member
    #2

    Stage 2 Rectal, only 3 months into treatment. So you know more than I do. But, I've heard some others talk about using things like Imodium as a preventative measure daily. Talk to doctor first, of course.

    I'm having to use Pepcid daily as preventative from the chemotherapy.

    Prayers for your continued health and healing!

  • madeit78
    madeit78 Member Posts: 8 Member
    edited April 2022 #3

    I was told to take immodium prior to my diagnosis. Since I have the Ostomy it really doesn't bother me to not know when I have to vacate. Probably the reason I am so thankfull to have had the ostomy surgery because it is so much better than the problems I had with controling my Bowells prior. Do I have a perfect life now? No but I am so much beter off, especially since it appears that I have beaten the Big "C" Will find out in a week or 2.

  • calvinkoko
    calvinkoko Member Posts: 3 Member
    #4

    71 years old in good health and colonoscopy this week showed mass. That is extent of my knowledge until follow up with dr. I have also set a meeting with surgeon recommended by doctor in about week.

    Completely and utterly scared. I do not even know what to ask or look for.

    Any guidance would be very much appreciated as my sleeping pattern is definitely suffering now.

  • madeit78
    madeit78 Member Posts: 8 Member
    edited April 2022 #5

    I can only share my feelings about my experience not knowing more about your diagnosis. My mass was right in my rectum and it had made my sphincter muscle inoperable makling my life miserable. I finally went to my DR and he told me to get in for a colonoscopy that I had refused several times to have one. I am 79 now and this was last year.

    As sick as it sounds I was relieved to the finding of the mass and had already prepared myself for the upcoming procedures. My old Dr and I both thought it may have been IBS. I had a couple of weeks of Chemo and then a month of radiation with no good results. I was scheduled for surgery and alredy knew that I was to carry an extra "suitcase" with me for the rest of my life. I had no problem with that because of the relief the bag has given me.

    My surgeon was able to use the robotic surgery to avoid the incision in my stomach.The only outside surgery was where the anus used to be and the area had to be closed up, obviousy. LOL. I had very little pain in my recovery except for haveing to be in a sitting position sometimes, for a month or two.

    Good luck with your future procedures and I hope you can get to the point where I am and was. It sure makes it easier. Feel free to ask for anything I can help with for yoour ease of mind.

  • calvinkoko
    calvinkoko Member Posts: 3 Member
    #6
    https://csn.cancer.org/discussion/comment/1696079#Comment_1696079

    Thank you for responding.

    I only know what I stated at this time. Strange thing is I had/had no “symptoms” when filling out questionnaire before colonoscopy. Just now I am very nervous. As is probably normal.

    Curious if there are specific questions that I should ask surgeon on dr who did colonoscopy when I see him for follow up so that I can get a better handle on this.

  • madeit78
    madeit78 Member Posts: 8 Member
    #7

    I found that the internet is a great source for questions just like you want to know about. Check it out and then ask me anything you want.

  • crispy77
    crispy77 Member Posts: 7 Member
    #8

    I had stage 3 and had an LAR last September, then reconnected in November. I went back to work in January and some days are really difficult. I’ll go a couple days without going and then it’s like everything decides to come out at once, which leaves my bottom sore. I only do the fiber every other day because sometimes it’s uncomfortable if it’s too bulky. I don’t know, I feel like I’ve had the opposite experience of everything I’ve read online.

  • calvinkoko
    calvinkoko Member Posts: 3 Member
    #9
    https://csn.cancer.org/discussion/comment/1696082#Comment_1696082

    Basically I just got the report and will see surgeon and dr that did colonoscopy next week. Report said:

    B. SIGMOID COLON MASS:

    - INVASIVE WELL TO MODERATELY DIFFERENTIATED COLONIC ADENOCARCINOMA.

    Rest was polyps that with research were not consequential.

    anyone tell me what is meant by above. I researched it but still uneasy.

    thank you

  • crispy77
    crispy77 Member Posts: 7 Member
    #10
    https://csn.cancer.org/discussion/comment/1696111#Comment_1696111

    mine were moderately to poorly differentiated. I took it to mean ‘well’ was earlier stage when I was researching it. Mine was rectal and they weren’t able to complete the colonoscopy because it was blocking entry into my colon After that but before surgery I had to have a CT scan and then an MRI. I got different results from both of them. lol final results (staging) came from pathology the day I got discharged from the first surgery. Such a roller coaster.

  • jimmyskinz
    jimmyskinz Member Posts: 2 Member
    #11
    https://csn.cancer.org/discussion/comment/1696042#Comment_1696042

    To say anxiety and stress in all our lives once diagnosed is an understatement. The unknowns that lie ahead are stressful. On my journey meeting hundreds over this last year one common thing would come up in my conversations with other patients and spouses. Stay positive the best you can! Easier said than done of course but high stress was always followed by complications.

    As far as my journey in back to work with no more bag and no rectum, here are some positives that hopefully help someone else too.

    I quit eating metamucil cookies and now eat fig bars with similar fiber content 3g each. I eat them before my 3 main meals. Much smaller amount meals also with small snacks between. I was very uncomfortable before this change with my bowel movements hurting, then followed by diahrea which feels like fire. Food couldn’t slow down enough in my body. Trial and error but for those struggling keep trying to find relief. My nurse friend gave me Nutrashield, silicone cream i put on when needed to sooth my anal area. Helps tremendously with the constant irritation.

    While i had my bag for 6 months i understood how poorly the intestines take in fluids. So not being a big water drinker, i paid the price after reconnection. My bowels were uncomfortable. So along with my fig bar I drink a bottle of water and make sure I drink a lot with meals and all day. I have experienced such an improvement that a couple trips to the toilet close to each other and I am done for the day.

    Finally, taking a muti vitamin everyday. Your body needs so much so make sure you discuss with your doctor and dietician.

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