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    stopping colonoscopy?

    I'm 59, almost 33 years post SCI. Just had my fourth colonoscopy in about 17 years. Had minor polyps removed during two of them. This time everything was fine. However, after the recent experience I think I may just never have another one. The prep, although it was done properly, was just too difficult for myself and caregivers, the facility, though forewarned three times did not have any patient lifting equipment in the unit, and the Ambulette service was almost an hour and a half late taking me home.

    I asked myself, what am I doing this for? Should bowel cancer be found am I, after 33 years living with an SCI (38 years by the time the next one is done), going to subject myself to colon resection, lengthy hospitalization, this scan, that scan, this test, that test, chemotherapy, etc., all the while trying to manage the myriad of other complications we live with on a daily basis. One of my recent caregivers, who was unable to return to work after such a diagnosis, went through such an ordeal and I witnessed her decline. She had a recurrence to the liver, additional surgery required, and additional chemotherapy, and now has an implantable chemo pump. Her abdomen has more suture lines than a railroad switchyard. Personally, I don't think I can go through what she went through.

    Now perhaps he may find something minor. But at what point after living with our difficulties for so long does one say no more difficult testing for something which I am not going to treat anyway?

    But my concern is this. Should I be asymptomatic when such cancer is found and I do not want to treat it what does one do when it starts to get bad? Hospice and pain control really only pertain to end-of-life, not to a sustained period of deterioration. You know what were talking about?

    Any thoughts?

    It seems to me that you're thinking about this pretty rationally. Colon cancer screenings are done to detect cancer at an early stage so that you can start treatment early. The overall rate of colon cancer is about 4.4%, but it might be worth asking your doctor if the polyps you have had in the past are indicative of an increased risk. I imagine if your doctor told you there was a very high likelihood of developing cancer you might want to continue to go through the ordeal of a colonoscopy to avoid what can be a pretty miserable way to die.

    If you're 100% sure that you wouldn't treat a malignancy even if it was a relatively easy procedure, then there is no point in continuing to screen for something you're not going to do anything about.

    You can absolutely get hospice or palliative care if you develop a terminal illness (like colorectal cancer) that isn't being treated. I would hope that it wouldn't be very hard to find a doctor to prescribe opioids for the pain. Opioids are of minimal benefit for chronic pain, but do wonders for acute pain and are standard of care for those dying of cancer. That being said with all the clampdowns on prescriptions of narcotics it might be tough to find someone who's willing to prescribe at adequate doses and continue to increase them as your condition deteriorates.

    According to this study, it looks like the average survival of someone with late stage colorectal cancer is around 18 months. I would suspect (though who knows?) that in those of us without much sensation and with a myriad of other issues going on it would probably be even later stage than a regular AB person when it was discovered. That being said, as you've witnessed with your caregiver, it can be a pretty miserable way to die over a relatively prolonged period.

    I think the decision you have to make is:
    1. If you discover a cancerous or precancerous lesion, would you want to treat it?
    -If no, then your answer is easy. No point in trying to find something you're not going to do anything about
    2. If you would treat it, is it worth the certain unpleasantness and complications that come along with repeated colonoscopies to avoid a relatively low, but certainly not negligible, risk of dying a terrible and prolonged death from colon cancer?

    For myself, I'm not of the age yet where colonoscopies are recommended. There's no family history of CRC, and I have few risk factors (other than being sedentary) for colon cancer. Therefore, I probably wouldn't go through the arduous process of prep and the procedure to get tested. There's probably something like a 97% chance that I'll die from something else and to me personally, the incredible unpleasantness and messy difficulty of bowel prep as a paraplegic isn't worth the benefit of early detection.

    Colon cancer screening in the general public is clearly of great benefit. So it is clear that the average person should absolutely get a colonoscopy as recommended, but you have to take into consideration your specific situation when deciding whether or not it's right for you.


      I agree with funklab on this one. I would just pass on this information about colon cancer screening from the American Cancer Society:

      The ACS recommends that people at average risk* of colorectal cancer start regular screening at age 45. This can be done either with a sensitive test that looks for signs of cancer in a person’s stool (a stool-based test), or with an exam that looks at the colon and rectum (a visual exam). These options are listed below.

      People who are in good health and with a life expectancy of more than 10 years should continue regular colorectal cancer screening through the age of 75.

      For people ages 76 through 85, the decision to be screened should be based on a person’s preferences, life expectancy, overall health, and prior screening history.

      People over 85 should no longer get colorectal cancer screening.

      *For screening, people are considered to be at average risk if they do not have:
      • A personal history of colorectal cancer or certain types of polyps
      • A family history of colorectal cancer
      • A personal history of inflammatory bowel disease (ulcerative colitis or Crohn’s disease)
      • A confirmed or suspected hereditary colorectal cancer syndrome, such as familial adenomatous polyposis (FAP) or Lynch syndrome (hereditary non-polyposis colon cancer or HNPCC)
      • A personal history of getting radiation to the abdomen (belly) or pelvic area to treat a prior cancer
      Personally for me, with a family history (two great uncles died of colon cancer) and polyps being found in my mother's last screen (at age 80), and given that I have a close friend diagnosed with stage IV colon cancer at age 39, I will continue to get my colonoscopoy screenings done every 5 years. My friend was too young to have routine screening done, so developed a complete bowel obstruction before his was diagnosed. He has been going through 3 years of surgeries, chemo, radiation, and is now on his second round of chemo after having a recurrence after being in (we thought) remission for over a year. He initially had a colostomy, then when in remission, he had this reversed, only to have to have a complete colectomy and ileostomy done with his recurrence.

      The prep is certainly no fun for anyone, but even more difficult for someone with a physical disability. Some people are able to get a 23 hour admission to do the last part of their prep with nursing support, then the next morning have their colonoscopy and go home from there. Medicare does not consider this an admission, but instead an "observation" or outpatient hospital stay.

      You might also discuss with your physician doing only annual occult blood screening of your stool instead of a colonoscopy. It is not as good at catching early cancer, but is better than nothing.

      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


        I'm 3 years past due for my next highly recommended colonoscopy. 7 polyps were found in my last one at UAB. Prep went well but procedure didn't as I woke up, hearing doctor saying "there's one". I recall seeing the image in the screen and I went into what I call an "oooh" spasm where I make that sound and whole body goes straight and all muscles hard stiff for 15 or so seconds. More anesthesia and I was out again. My rectum and colon has felt different and sometimes painful since then. Occasional blood if I pass big hard stool.

        I had 2 previous colonoscopies @ Colonoscopy Institute of Alabama (correct name?). They are good and will use them soon, hopefully. My procrastination combined with the Covid crises has delayed my actions. They found 1 polyps the first time and 3 the second (7 at UAB) so I'm in the high risk category and have been told that stool tests are not for me. Is that correct? Now with dark stool, I've gotta get motivated to address this. I need to ask about the outpatient observation stay.

        Crags brings up another topic that has gone thru my mind many times. In the event of a major cancer diagnosis, long suffering treatments (to no avail) added to our existing struggle and the added strain it puts on family and/or caregivers. From what I've witnessed with hospice, it's just a delayed drugged death. What, if any is the mental suffering? Death with dignity is a topic our government doesn't want to address.
        Attack life, it's going to kill you anyway
        Steve Mcqueen (Mr Cool)


          For some people the Cologuard "At Home Test," is an option.

          "Screening is simple and noninvasive: Cologuard requires a prescription, but after that a kit is mailed to a patient’s home, where a single stool sample is collected and returned for testing."

          "Evidence of the test’s accuracy appeared in the New England Journal of Medicine just before FDA approval in 2014. That study of 9989 patients found the test had a 92.3% sensitivity rate for cancer and a 42.4% sensitivity rate for detecting precancerous lesions. The detection rate of polyps with high-grade dysplasia was 69.2%, compared with 46.2% for FIT.

          Berger said right now Cologuard is only approved for screening, not surveillance of patients who have been treated for colorectal cancer. However, a study under way in the Netherlands will examine whether Cologuard is appropriate for this use.

          The test is not recommended for patients with symptoms of colorectal cancer or those at high risk, including those with a family history of the disease or conditions like Crohn’s disease. Patients who get a positive result are instructed to follow up with a diagnostic colonoscopy."



            crags, I've had the same thoughts about all kinds of screenings. Barbara Ehrenreich's book, Natural Causes: The Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer, pretty much sums it up for me: Past a certain age, one enters a phase of life when one is statistically "old enough to die," as she puts it - and that's assuming that one is AB. In terms of her own life, Ehrenreich has elected not to look for trouble. Of course, one never knows for sure what one would do under certain circumstances until they arise - but I hear you about colonoscopy, in particular.
            MS with cervical and thoracic cord lesions


              Hospice should not be a "delayed drug death". Their mission is to make the last phase of your life more comfortable. So it can assist in things like extra equipment, managing complications (not necessarily in the medical sense), and also is a valued resource for your caregivers. I have found hospice to be quite comforting to families and caregivers. They also are great teachers since many people do not know what to expect when a loved one is passing. Generally, hospice can stay in the picture for 6 months.
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


                My rectal sphincter is quite tight. Even with the tremendous fluid buildup in the colon from the prep, essentially none came out without digital intervention. All it took was simple insertion however and it sounded like the dumping of a bucket to the toilet. Nonetheless, it took literally, between the two sessions required, probably about 40 digitals. It was a tremendous physical strain for those doing it, as it required close attention. It was not like the kitchen appliance you see on TV where you "set it and forget it" so to speak. You would not get that type of attention if the prep was done inpatient and you certainly will probably be left in your "stool sauce" .

                Not to mention the hyperreflexia from all of the trauma.

                I wound up going to the hospital two days later because I noticed one of my feet had swollen up noticeably and I thought they fractured my foot or ankle when they hoisted me in the patient lift, which none of them knew how to use and which I suspected my foot had gotten trapped under the base, despite my warning. Luckily the films were negative. they may have sprained it however.

                If I suspected a major problem down the road I guess one can always do other tests short of the colonoscopy to see if anything is observable and then one can decide. This would include MRI or whatever they call virtual colonoscopy, etc.. The AB person I knew ignored difficulty defecating, the reason being a baseball sized tumor in the colon.


                  I don't know how credible this insurance company source is but makes an interesting comparison of 6 options we have for looking for problems in the colon.

                  One thing that struck me about this was that Cologuard was about the same cost as a flexible sigmoidoscopy. I had no idea Cologuard was so expensive. That's likely an inaccurate comparison for me since, because of my SCI, they insist on anesthesia and an operating room.
                  Last edited by endo_aftermath; 30 Jul 2020, 6:35 PM. Reason: Add cost comment


                    Talk to your GI doc or primary care although your PCP may not be listened to by the hospital types doing your prep. You can make it easier by really talking to your GI doc ahead and have him order everything including "trained aides or RNs with hoyer lifts". Ease up on bulk forming food 3 days ahead. Good time for chicken noodle soup. Once the worst of the solids have passed and you are down to tons of liquidy stuff ask that a stool collection device be taped to your butt. You do not want it inserted and guys have an easier time with the tape staying put. At that point you can basically go to sleep if you have drank all the prep. Anyone who has ever woken up during twilight sedation needs to tell the anestheologist. They will up the dose or in the case it happens for the first time during say you need more. They want you out. My biggie is GoLytely does not work fast or well enough for me. I need Magnesium citrate and I make sure the hospitalist understands that before I get into their bed. It is stupid to go through that then they cannot see what they need to see. I have a family history so had my first at 40. They found precancetous polyps. Since then I have had basic non-precancerous or cancerous polyps removed 3 other times. Because I get one every 5 years I expect they would remove anything cancerous looking as a polyp but I have instructions to wake up and have a discussion before any treatment for cancer. Caught early they should be able to go right back in and remove a small area surrounding the polyp and such and have it sent to the lab while you are on the table much like skin cancer. Anything bigger and requiring radiation or chemo is a totally different discussion. My mother never had screening tests. She found out after she collapsed and my Dad could not get her
                    up by himself. Her blood tests indicated loss of blood and a short talk and they knew where to look. The diagnosis after removing 18" of her colon was terminal. There was no way Dad could handle her hospice at home due to a secondary diagnosis. She was expected to live 12 to 18 months with no treatment other than pain medicine. We found a SNF that would take her and treat her secondary dx too but we would be paying the inpatient stay. Having seen my grandfather die of this with treatment back in the early 1970s Dad and I dreaded the pain aspect more than she did. In what was finally divine intervention after so many years she died about 2 weeks later from a pulmonary embolism. That took her so fast that the RN who walked in just as it hit immediately called the in house doctor and she was gone before he ran down 2 flights of stairs and 1 hallway. Not that he would have intervened due to hospice being a basically DNR service. Other than knowing that regular 5 year colonoscopies tend to find mainly stage 1 and 2 cancers I will continue with that. The new 3D mammogram is another matter entirely after my right arm socket going to hell this summer. But basically, after 28 years I have had a good run and have kind of made my peace with just remaining as painfree as possible and my doctors all have a copy of my DNR and my husband has my POA for medical and I trust him to abide by my wishes.
                    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.


                      I have a colostomy. It's not too bad as a para. I just graft a garbage bag to a normal colostomy bag and let the shit fly...........and it certainly does
                      69yo male T12 complete since 1995
                      NW NJ