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Thread: Discussion about Megacolon

  1. #1

    Discussion about Megacolon

    Lately there have been a few posts in which Megacolon has been mentioned. SCI Nurse KLD posted a succinct and understandable definition and graphics in Post 5, http://sci.rutgers.edu/forum/showthr...ight=megacolon

    I've been doing a little research and came across a startling statistic from one study: https://www.nature.com/sc/journal/v3...df?origin=ppub

    Megacolon in patients with chronic spinal cord injury
    D Harari*,1 and KL Minaker2

    Purpose: To investigate the clinical and functional correlates of megacolon in individuals with chronic spinal cord injury (SCI).


    Patients and methods: This is a cross-sectional study of 128 patients consecutively admitted to a SCI in-patient service in a US Veterans Administration Medical Centre (mean age 57 +/- 15 years, mean years since injury 20 +/- 13, 97% male) who underwent plain abdominal radiography for study purposes. Participants were characterized by radiological findings. `Megacolon' was defined as colonic dilatation of >6 cms in one or more colonic segment(s). Clinical, functional, and medication data were abstracted from the medical and nursing records. Individual interviews were conducted with study participants regarding bowel-related symptoms and treatment over the previous 1-month period.


    Results: Seventy-three per cent of subjects (n=94) had megacolon, and 52% of these individuals had associated radiological constipation. Subjects with megacolon were compared with those without colonic dilatation (n=34). Factors significantly associated with megacolon were older age, longer duration of injury, symptom of abdominal distension, radiological constipation, urinary outlet surgery, laxative use at least once weekly, use of anticholinergic drugs, and use of calcium-containing antacids. These factors were simultaneously included in a multiple logistic regression model. Independent correlates of megacolon were more than 10 years elapsed since acute injury, age over 50 years, and use of >4 laxative doses per month.


    Conclusion: Megacolon is a highly prevalent disorder in individuals with chronic spinal cord injury. Our findings suggest that the presence of megacolon may be predicted in older individuals, and in those who are more than 10 years post-SCI. We also found that clinical constipation was frequently present in individuals with megacolon, despite their significantly greater use of laxatives.

    Seventy-three percent of subjects in the study of 128 people with spinal cord injury were found to have a megacolon. That is an astounding number and as we see people living longer with spinal cord injury and aging. According to the statistics in this study a good number of us should be presenting with megacolon. This is a subject that has not been discussed much here and we need to become more aware of what to look for, when to seek treatment, and how to live with this condition.


    So, I'd like to have some discussion here about this problem.


    • Has any one been diagnosed with megacolon?
    • What were your symptoms?
    • How was your megacolon diagnosed?
    • What treatment have you had for megacolon?
    • What was recovery like?
    • How are you now, post treatment?


    Last edited by gjnl; 11-05-2017 at 08:47 PM.

  2. #2
    Quote Originally Posted by gjnl View Post
    Lately there have been a few posts in which Megacolon has been mentioned. SCI Nurse KLD posted a succinct and understandable definition and graphics in Post 5, http://sci.rutgers.edu/forum/showthr...ight=megacolon

    I've been doing a little research and came across a startling statistic from one study: https://www.nature.com/sc/journal/v3...df?origin=ppub

    Megacolon in patients with chronic spinal cord injury
    D Harari*,1 and KL Minaker2

    Purpose: To investigate the clinical and functional correlates of megacolon in individuals with chronic spinal cord injury (SCI).


    Patients and methods: This is a cross-sectional study of 128 patients consecutively admitted to a SCI in-patient service in a US Veterans Administration Medical Centre (mean age 57 +/- 15 years, mean years since injury 20 +/- 13, 97% male) who underwent plain abdominal radiography for study purposes. Participants were characterized by radiological findings. `Megacolon' was defined as colonic dilatation of >6 cms in one or more colonic segment(s). Clinical, functional, and medication data were abstracted from the medical and nursing records. Individual interviews were conducted with study participants regarding bowel-related symptoms and treatment over the previous 1-month period.


    Results: Seventy-three per cent of subjects (n=94) had megacolon, and 52% of these individuals had associated radiological constipation. Subjects with megacolon were compared with those without colonic dilatation (n=34). Factors significantly associated with megacolon were older age, longer duration of injury, symptom of abdominal distension, radiological constipation, urinary outlet surgery, laxative use at least once weekly, use of anticholinergic drugs, and use of calcium-containing antacids. These factors were simultaneously included in a multiple logistic regression model. Independent correlates of megacolon were more than 10 years elapsed since acute injury, age over 50 years, and use of >4 laxative doses per month.


    Conclusion: Megacolon is a highly prevalent disorder in individuals with chronic spinal cord injury. Our findings suggest that the presence of megacolon may be predicted in older individuals, and in those who are more than 10 years post-SCI. We also found that clinical constipation was frequently present in individuals with megacolon, despite their significantly greater use of laxatives.

    Seventy-three percent of subjects in the study of 128 people with spinal cord injury were found to have a megacolon. That is an astounding number and as we see people living longer with spinal cord injury and aging. many of us could present with megacolon. This is a subject that has not been discussed much here and we need to become more aware of what to look for, when to seek treatment, and how to live with this condition.


    So, I'd like to have some discussion here about this problem.


    • Has any one been diagnosed with megacolon?
    • What were your symptoms?
    • How was your megacolon diagnosed?
    • What treatment have you had for megacolon?
    • What was recovery like?
    • How are you now, post treatment?


    Not diagnosed but I'd be interested to know the correlation between mega quad belly and megacolon.

  3. #3
    I'm still waiting for any information that links irrigation to megacolon. I asked multiple times for information, but no one has provided anything, even though SCI-Nurse and other people continued to warn that it may cause megacolon.

    The following sentence was in the study:

    Even the minimal administration of enemas in this study may represent underuse, as evidence suggests that regular administration of 500 ml volume tap water enemas is beneficial in reducing evacuation time and episodes of overflow incontinence in SCI patients.
    So again, I personally feel regular irrigation using IryPump, or Peristeen, or whatever would DECREASE your chances of megacolon, considering constipation is a driving force.

  4. #4
    I went to a Gastroenterologist on Tuesday. I asked my doctors office to refer me after KLD told me that my symptoms seemed to point to obstructive megacolon.

    Anyhow, I spent two hours on a stretcher before I finally get into the room. Then when I spoke to the NP. She never came closer than probably 3 feet. When I say that I had spoken to a nurse who specializes in SCI and that it sounded to her that I had megacolon. Her face momentarily expressed confusion and then told me that she would speak with the doctor and he'd be in shortly. When he comes in, he doesn't come any closer than the NP. I tell him what's going on and about speaking to the SCI nurse (KLD). He too expressed slight confusion and then immediately said that I needed to eat more fiber and should schedule a colonoscopy (because cancer... he went on about it). He asked me not one single question about my diet or stool consistency. He only knew what was on my chart. He didn't even respond when I mentioned my ileus from the first of August, he just talked about the colonoscopy again. I was livid.

    To make things worse, the stretcher ride not only brought on mild AD (soaked in sweat), but caused me an additional small skin tear.
    Did I say that I was livid?

    And I'm still dealing with the bowel problems... with no physician to discuss it with.
    (My primary doctors office doesn't have a replacement for my home visiting NP)

  5. #5
    ]\
    Quote Originally Posted by paraparajumper View Post
    I'm still waiting for any information that links irrigation to megacolon. I asked multiple times for information, but no one has provided anything, even though SCI-Nurse and other people continued to warn that it may cause megacolon.

    The following sentence was in the study:
    Even the minimal administration of enemas in this study may represent underuse, as evidence suggests that regular administration of 500 ml volume tap water enemas is beneficial in reducing evacuation time and episodes of overflow incontinence in SCI patients.

    So again, I personally feel regular irrigation using IryPump, or Peristeen, or whatever would DECREASE your chances of megacolon, considering constipation is a driving force.
    But 500ml volume of tap water enemas are a lot less volume than some Peristeen users are talking about using. Some say they are using 3 quarts which is about 5 times more than the study references. Can that much volume of tap water cause irritation, mucus, and possibly megacolon over time?

    Obviously there is a lot that none of know about this condition, and we need to become a lot smarter to direct our physicians in the right direction, especially in all of us old spinal cord injured. So any one in our community...megacolon diagnosis????

  6. #6
    Quote Originally Posted by Scott C4/5 View Post
    I went to a Gastroenterologist on Tuesday. I asked my doctors office to refer me after KLD told me that my symptoms seemed to point to obstructive megacolon.

    Anyhow, I spent two hours on a stretcher before I finally get into the room. Then when I spoke to the NP. She never came closer than probably 3 feet. When I say that I had spoken to a nurse who specializes in SCI and that it sounded to her that I had megacolon. Her face momentarily expressed confusion and then told me that she would speak with the doctor and he'd be in shortly. When he comes in, he doesn't come any closer than the NP. I tell him what's going on and about speaking to the SCI nurse (KLD). He too expressed slight confusion and then immediately said that I needed to eat more fiber and should schedule a colonoscopy (because cancer... he went on about it). He asked me not one single question about my diet or stool consistency. He only knew what was on my chart. He didn't even respond when I mentioned my ileus from the first of August, he just talked about the colonoscopy again. I was livid.

    To make things worse, the stretcher ride not only brought on mild AD (soaked in sweat), but caused me an additional small skin tear.
    Did I say that I was livid?

    And I'm still dealing with the bowel problems... with no physician to discuss it with.
    (My primary doctors office doesn't have a replacement for my home visiting NP)

    I hear you.

    FYI - a colonoscopy is how they diagnose Megacolon, in most cases. You can't diagnose it by history/asking questions. And probably they have never had a person come in saying they were worried they had it before, so their response included more than a little surprise...

    Yeah, it is hard to find doctors experienced with SCI, and neurogenic bowel. Even harder to find doctors that examine you when you are disabled, and take the time to ask you all of the appropriate history/questions.

    Do you have a physiatrist? Or a nurse who works at a local rehab center with physiatrists/spinal cord injury patients? They usually know more. I have found that the nurses are better at answering questions.

    We found a pretty good gastroenterologist interested in neurogenic bowel at a local hospital. But he still doesn't examine my dad, he still doesn't want to follow him regularly, and he still gives zero input on bowel program specifics. He focuses on medication options. But he has been very helpful.

  7. #7
    Senior Member lynnifer's Avatar
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    No on topic really .. but I had an internal rectal prolapse that I mentioned a few times, but no one seemed to give a damn so I've left it alone (ER and doc and specialist).

    Clay like or soft stool. All of a sudden this summer, I've gone back to my hard little rabbit turds (something David used to affectionately call them lol).

    I've gone from clay 90min plus bathroom times back to five minutes! YES! It's probably not good for me, but it's good for mental health and not sitting on the throne for long!
    Make America Sane Again. lol

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #8
    Quote Originally Posted by hlh View Post
    I hear you.

    FYI - a colonoscopy is how they diagnose Megacolon, in most cases. You can't diagnose it by history/asking questions. And probably they have never had a person come in saying they were worried they had it before, so their response included more than a little surprise...

    Yeah, it is hard to find doctors experienced with SCI, and neurogenic bowel. Even harder to find doctors that examine you when you are disabled, and take the time to ask you all of the appropriate history/questions.

    Do you have a physiatrist? Or a nurse who works at a local rehab center with physiatrists/spinal cord injury patients? They usually know more. I have found that the nurses are better at answering questions.

    We found a pretty good gastroenterologist interested in neurogenic bowel at a local hospital. But he still doesn't examine my dad, he still doesn't want to follow him regularly, and he still gives zero input on bowel program specifics. He focuses on medication options. But he has been very helpful.
    I don't have any sort of specialist doctor and at the moment, my primary care doctor which sends out a NP to the house, has yet to hire a replacement so I've been waiting to speak to someone personally for a couple extra months.

    I thought they diagnosed megacolon with an x-ray or cat scan. I would think a non-invasive method would be the first best choice for diagnosis.

  9. #9
    Yes, it is very rare to find a GI physician in the USA who has experience in problems related to neurogenic bowel such as occurs in people with SCI. Those few who do often are associated with VA SCI Centers, since these centers follow Veterans with SCI for their lifetime, not just during their acute rehab phase. If you look at the references for the article above, you will see the names JM Stone, MD (who was at Stanford and the Palo Alto, CA VA SCI Center) for a number of years and did much of the research in this area during that era (he has been retired for some time now), and Bard Cosman, MD who works out of UCSD and the San Diego and who was a resident under Dr. Stone early in his career. Many of the other research articles cites also came out of the VA SCI care system. A number of studies have been done in England as well.

    Here are several other good articles about SCI GI problems:

    http://www.jgld.ro/2012/1/13.pdf

    https://www.nature.com/sc/journal/v4...c2010162a.html

    http://www.sciencedirect.com/science...21691809000675

    https://synapse.koreamed.org/DOIx.ph....2013.37.4.547

    (KLD)
    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.

  10. #10
    So, I'd like to have some discussion here about this problem



    My Dad has megacolon.

    My father is an older paraplegic. 75 years old, injured 10 years ago, with a low injury (T11-T12 fracture causing L3 ASIA C incomplete). He walks with forearm crutches, but is fairly inactive, but actually... he's pretty good for a 75 year old with a SCI. He has neurogenic bowel, and probably finds this aspect of the injury as the worst.

    What is also important is that before his injury, he already had chronic constipation issues and hemorrhoids. This may put him in a subgroup that is particularly vulnerable to developing things like megacolon after neurologic injury. He is clearly older, chronically injured which may put him more at risk. And he has a more lower motor neuron type of bowel. He doesn't respond well to suppositories/enemeeze so doesn't use them, he complains that "I don't have any paristalsis!!", and has managed his bowels mostly with a bit a digital stimulation +/- manual evactuation, and lots of straining.

    His megacolon was actually discovered incidentally. He had a colonoscopy two years ago (8 years after injury) just as part of routine colon cancer screening. His gastroenterologist mentioned the dilated colon that was at least ?3-5x normal diameter. My Dad's bowel program at the time was not great but manageable, although he always hated it and had bad hemorrhoids. His doctors were not concerned and said the megacolon finding is normal for someone with chronic SCI/neurogenic bowel over time.

    However, the dilated colon did make it a bit more difficult for the gastroenterologist to do the colonoscopy. He was not able to get to the very end of the colon because of the abnormal colon shape and tortuous course.

    There was no special ?treatment at that time. I think he was using Miralax daily, and a probiotic, which he had been using for ?5 years. His time on the toilet with his bowel program may have been slowly starting to increase.

    But my Dad has had more difficulty with his bowels over the past year. He has also used more opioid pain medicines over this time, so we wondered if that could correlate. It is the hemorrhoids and pain/bleeding that is the biggest problem, although of course spending an hour on the toilet is no fun.

    He tried Peristeen for a couple weeks, hoping that it might help initiate his bowel program without straining and worsening his hemorrhoids, but it didn't give a consistent improvement. He used 1.5-2 liters of water with Peristeen, which is quite high for Peristeen, but because of his wide megacolon he likely needs much more volume in an enema for it to be effective.

    For the past few months, my Dad has been working with a gastroenterologist with an interest in neurogenic bowel. He started him on Linzess and misoprostol (cytotek), and things have improved. He takes Miralax as needed to keep things from getting too firm. He has also talked about using a medication (Movantik) that specifically inhibits the constipating effects of opioids if my Dad needs more pain meds in the future.

    So far things are a bit better. But honestly, my Dad has a harder time with his bowel program as he gets older, he is tired of it, and we keep worrying about the state of his hemorrhoids which can be very painful. We have brought up the topic of colostomy, but both his physiatrist and gastroenterologist have discouraged that for now, and say there are more options.

    I have read the reference you cite and have talked with my Dad's physiatrist and his gastroenterologist (who is interested in neurogenic bowel) about this issue multiple times. They do not agree with concerns that frequent use of laxatives or enemas leads to the development of megacolon. These are correlations and not evidence of causation. More likely, the laxatives are not working well as you are aging/living with a neurogenic colon (that may be dilating with time) and may cause you to need to use more. If medications are needed, they are needed.... particularly when you have optimized other aspects relevant to your bowel program.

    There aren't enough studies of laxative use in those with SCI. There are also many new medications for bowels/constipation that have not been well studied in SCI at all. We are likely using old tech.

    My Dad's SCI doctors agree that many (most?) people with chronic neurogenic bowel develop some relaxation and dilation of the colon over time. Why some people develop it more than others, or more quickly, is not clear, with additional variables being likely relevant (older age, constipation before injury, lower motor neuron bowel) as mentioned in the article. We all know that food does not move through the digestive system as fast when you have a SCI. This causes some back up of stool all the time, normally, and can slowly lead to dilation of the colon. Poor movement of stool through the colon from the muscle contractions in the wall or "peristalsis" may be more of an issue in some folks than others, depending upon how complete your injury is or if it is a higher or lower injury.
    Last edited by hlh; 11-06-2017 at 02:31 PM.

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