Digestive problems two years after successful colon cancer surgery....

Posted by ilene1 @ilene1, Oct 12, 2016

Hi! I am new to the group and am happy to be here. I am wondering if anyone has had a similar experience to our situation: My "young" 77 year old husband had colon cancer in 2013, with successful surgery (he no longer has a colostomy bag which he had while he was in chemo & radiation). He has always had a somewhat sensitive digestive system but it did not interfere with his very active professional life.
He has since been diagnosed with FTD- a degenerative brain condition which brought along some Parkinsonian type symptoms which has limited his walking so he sits much of the day. For the past couple of years he has increasingly had daily problems with digestion- most often constipation, the next day diarrhea. As soon as I get it balanced out to normal - solid well formed bowel movements, within a day or so it will be the opposite. I try to be very careful with diet. We eat healthy, mostly organic foods. I give him a bland brat type diet when he's "loose", and more roughage when he's constipated.
but it seems to be a never ending cycle....

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

Welcome @ilene1. Thank you for posting. I think you might also be interested in the Caregivers group https://connect.mayoclinic.org/group/caregivers/ In particular the discussion called "Caring for someone with dementia / Alzheimer's" http://mayocl.in/2ccA0jO I wonder if someone in that group is caring for someone with frontotemporal dementia (FTD) and may have something to add.

In the meantime, I'm bringing fellow members @helloshelly7969 @tbeckys @ntp01 and @safetyshield into this conversation to see if they have some experience with regulating bowel movements and diet to share with you.

Ilene, It sounds like you have very good reactive strategies to managing the ever-changing digestive needs of your husband. But I can imagine that you're looking for ways to get ahead of the situation, so that the bowel movement consistency is more regular. Have you ever considered a consult with a dietitian?

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@colleenyoung

Welcome @ilene1. Thank you for posting. I think you might also be interested in the Caregivers group https://connect.mayoclinic.org/group/caregivers/ In particular the discussion called "Caring for someone with dementia / Alzheimer's" http://mayocl.in/2ccA0jO I wonder if someone in that group is caring for someone with frontotemporal dementia (FTD) and may have something to add.

In the meantime, I'm bringing fellow members @helloshelly7969 @tbeckys @ntp01 and @safetyshield into this conversation to see if they have some experience with regulating bowel movements and diet to share with you.

Ilene, It sounds like you have very good reactive strategies to managing the ever-changing digestive needs of your husband. But I can imagine that you're looking for ways to get ahead of the situation, so that the bowel movement consistency is more regular. Have you ever considered a consult with a dietitian?

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Thanks Colleen! Especially for the referrals to the two other groups...<br><br>I have spoken with a dietician, but it seems regular dietary advice <br>might not apply as well. He had radiation treatment with the colon <br>cancer and that might have caused scarring making things more difficult <br>and unpredictable. I am set to have a conversation with his cancer <br>doctors as well.<br><br>thanks so much... I look forward to participating in the groups.<br><br>all best, Ilene<br><br><br>

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@colleenyoung

Welcome @ilene1. Thank you for posting. I think you might also be interested in the Caregivers group https://connect.mayoclinic.org/group/caregivers/ In particular the discussion called "Caring for someone with dementia / Alzheimer's" http://mayocl.in/2ccA0jO I wonder if someone in that group is caring for someone with frontotemporal dementia (FTD) and may have something to add.

In the meantime, I'm bringing fellow members @helloshelly7969 @tbeckys @ntp01 and @safetyshield into this conversation to see if they have some experience with regulating bowel movements and diet to share with you.

Ilene, It sounds like you have very good reactive strategies to managing the ever-changing digestive needs of your husband. But I can imagine that you're looking for ways to get ahead of the situation, so that the bowel movement consistency is more regular. Have you ever considered a consult with a dietitian?

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You're most welcome. If it isn't too much information all at once, you may also be interested in the Cancer group https://connect.mayoclinic.org/group/cancer/ in particular this discussion "Healthy diets for cancer patients" https://connect.mayoclinic.org/discussion/healthy-diets-for-cancer-patients/

The original question was asked for a different reason but you may find some relevant tips in the discussion or people you'd like to connect with.

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I also have no colon and i do find that inactivity causes different bowel habits and rough digestion also. I need to be up and active in order to have any type of control or consistency.

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Good morning Ilene. I wanted to address your concerns and challenges regarding your "young" husband. Regarding the cancer treatments slowing the bowel pattern, along with the scar tissue which maybe contributing, my brother in law has had major similar issues. He has just received some aggressive Physical Therapy to treat adhesions, which were causing frequent and progressive bowel obstructions. This was done at an Indiana center specializing in this approach. While it was a rough week of intensive treatments, he has so far shown improvement . The long term results are still unknown. The bowel pattern has clearly improved as of now. Secondly, the potential for latent specific bacteria within the bowel causing constipation (lots of research being done in this area... Spores in the c-diff group causing constipation versus diarrhea ) can possibly be reduced by ingesting a simple daily dose of organic coconut oil , 1 and 1/2 tsp placed in a smoothly or other food along with a well rounded Diet of course. This is unsubstantiated, but safe. Achieving results will take a bit of time. Coconut oil is known for its antibacterial and anti fungal properties. Thirdly, the changes in the basal ganglia and the frontal temporal lobe causing Parkinsonian movement shifting can be treated through a sensory integration program. New information is being put out in this area. The functional (not organic) aspects can be addressed. I am referring to movement, balance, visual and vestibular awareness/calibration of your husband's perspective of his own body in space while he navigates through a room or terrain. These functional sensory skills are needed for competent gait/walking. Remember Ilene, that you are the "Mother Ship" as a care giver. Take care of your own health first, because your husband needs that as much as your love. I hope this information helps. Good luck!
UPArtist

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Thank you @upartist for addressing @ilene's concerns about her husband's digestion issues. You provide clear information and I particularly appreciate that you underline what has been researched, and what is unsubstantiated as yet.

@ilene, I would like to invite you to look at 2 links below. Although your original question was about digestive issues, Frontotemporal Dementia (FTD) and constipation seem to be quite connected, as you will read in the papers below.

This first link underscores what @upartist wrote:
http://bit.ly/2evX7Xy
People with FTD can experience some bowel problems, constipation being one of the most common.

Mayo Clinic also has active ongoing research on FTD and its related conditions, and this second link from Mayo Clinic will give you some compressive information about that;
http://mayocl.in/2dZF7lq

Kudos to you for managing your husband's diet so efficiently. I was wondering if you could shed some light on his fluid intake?

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Thankyou upartist and kanaaz! This was very helpful and interesting. I use coconut oil for cooking and skin care, but didnlt think about adding to a smoothie and will give that a shot for the long run. My husband;s FTD has progressed to the point where he is now in a Hospice program so further aggressive treatment other than palliative care is not in the cards. There has been some improvement after giving him organic yogurt smoothies ( he usually did not like yogurt but these he'll take)... and the incidence of constipation and/or diarrhea has been greatly reduced..he can go for a week or more without major problems generally. His legs however, in the last couple of weeks have been giving out and he is sitting more and moving less, so the cycle has returned somewhat.
Thankyou for the FTD links! Glad to be part of this group.

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@ilene1

Thankyou upartist and kanaaz! This was very helpful and interesting. I use coconut oil for cooking and skin care, but didnlt think about adding to a smoothie and will give that a shot for the long run. My husband;s FTD has progressed to the point where he is now in a Hospice program so further aggressive treatment other than palliative care is not in the cards. There has been some improvement after giving him organic yogurt smoothies ( he usually did not like yogurt but these he'll take)... and the incidence of constipation and/or diarrhea has been greatly reduced..he can go for a week or more without major problems generally. His legs however, in the last couple of weeks have been giving out and he is sitting more and moving less, so the cycle has returned somewhat.
Thankyou for the FTD links! Glad to be part of this group.

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Good morning Ilene. I am so sorry that things have progressed with your husband. Since you are dealing with a resurgence of the constipation, and having fewer options to put into your strategies (walking and mobility), I will bring up some new ideas. Because constipation can be so painful in a variety of ways, the various kinds of enemas should be considered and possibly discussed with your gastroenterologist. There are the fleets over the counter, which have basic saline and some with mineral oil, to be used according to the variations in the type of constipation. Secondly, there is a soap suds enema ( this is a nickname for it), which maybe available through your physician or hospice program (Castile soap concentrate by Tri Leaf). This is a gentle potassium and glycerin based mixture added to a larger amount of water using a gravity feed. All of these methods can be applied while he is comfortably laying down in bed. Movement and positioning while in the bed can be used to facilitate the process. The softness of the stool may be improved with the daily use of miralax, as you probably know. Gentle massage of the tummy while in a stretched out position on his back, may help move the stool through. You may also want to explore your area medical facilities for enema clinics for suggestions. I would caution you with this, however, as a program like this needs a clinically based approach to management of the bowel. (In lieu of your husband's history of obstruction. A stimulant for bowel motility is contraindicated with a history of obstruction). I hope this helps. My thoughts and prayers are with you.
Respectfully,
UPArtist

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I have PBS an auto immune disease of bile ducts, I use 100%chelated Magnesium caps before bed for constipation it has a drowsy effect good for anxiety, I checked my blood work and was low in magnesium, has your husband been tested for this? Works great Deena

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@ilene1

Thankyou upartist and kanaaz! This was very helpful and interesting. I use coconut oil for cooking and skin care, but didnlt think about adding to a smoothie and will give that a shot for the long run. My husband;s FTD has progressed to the point where he is now in a Hospice program so further aggressive treatment other than palliative care is not in the cards. There has been some improvement after giving him organic yogurt smoothies ( he usually did not like yogurt but these he'll take)... and the incidence of constipation and/or diarrhea has been greatly reduced..he can go for a week or more without major problems generally. His legs however, in the last couple of weeks have been giving out and he is sitting more and moving less, so the cycle has returned somewhat.
Thankyou for the FTD links! Glad to be part of this group.

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Hi Ilene,
I, too, am sorry to hear that things have progressed to this point with your husband. What a great resource you are @upartist to reconfigure your suggestions to his current stage.

Ilene, you may be interested in reading or joining in the Palliative and Hospice Care discussion here http://mayocl.in/2gml0Rz or even joining the Caregivers group https://connect.mayoclinic.org/group/caregivers/
Keep us posted as you are able.

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