digestion tricks that have helped me

LaCh
LaCh Member Posts: 557
in Anal Cancer #1

I'm one year, 9 months post treatment. Mitomycin and 5FU destroyed my digestion and gave me gastroparesis.  As we're left  to find our own solutions post treatment to problems that result from treatment, and after trying many things, most of which have failed, I've come up with these things that mitigate the inability of my stomach to empty and my small gut to move things along. (Once it's in my large bowel, I'm good to go). This is what I now do... it's helped me, may help others, but of course, there's no guarantee and the only way to know is to try it, if you want. I do this:

1) overcook everything (especially but not only vegetables).

2) stick your overcooked vegetables in a blender and make it mush. I add salt and oil.

3) ginger. This bears some explanation. Ginger is supposed to aid in digestion and after trying about 6 or 7 different non pharmaceutical supplements, none of which did anything to help, I tried ginger with a good degree of success. This is what I do.

a) freeze a fresh ginger root.

b) with a grater, grate the frozen root (you don't need much and one root lasts a long time.) I don't peel the ginger, mostly because I'm lazy, and have had no problems with ingesting the skin. Grating it frozen makes it very easy to grate.

c) steep the grated ginger in boiling water for a while. I just nuke it, remove it and let it cool at room temperature. I add some lemon juice, and stick it in the fridge. Without the lemon juice, it's hard to drink. You can mix in something else, tea or something, but then you're diluting it, so the beneficial effects may be less. I drink a very small amount, maybe once or twice a day or as needed, but the effects seems to last beyond one meal. It's also an appetite stimulant, so if that's a need or a concern, keep that in mind.  Also, be aware that ginger is a natural anti coagulant and can also lower blood pressure.  That said, it's been very helpful for me, and when combined with the other things, has made a bad situation much more tolerable.

Comments

  • pializ
    pializ Member Posts: 508 Member
    #2
    LaCh

    I am sorry you have had such problems post treatment. I have, to date, been more fortunate, but I am sure someone will at some point be glad of you sharing your dietary tips. 

    How's your dog & Central Park?

    Liz

  • LaCh
    LaCh Member Posts: 557
    #3
    pializ said:

    LaCh

    I am sorry you have had such problems post treatment. I have, to date, been more fortunate, but I am sure someone will at some point be glad of you sharing your dietary tips. 

    How's your dog & Central Park?

    Liz

    pializ

    Well, no, what I  meant to convey was that I've found a way to ameliorate the digestion problem, not that I was having one. My message was the solution, not the problem itself, and as long as I follow the few simple strategies that I've found, I'm ok.  Anyway, how's my dog...he's fine... doing good, thanks... My other "issue" for which I haven't yet found a solution is fatigue, so he (my dog) would probably like more outside time than he's getting, but otherwise, he's doing good, thanks. I've only been to Central Park a handful of times this year... seemed very, very crowded... and now that we're on the threshold of winter, my plan is to hibernate in my cave as much as I possibly can, with dog walks and other necessities attended to as simply (and quickly) as possible. I don't like the winter. Way too cold for me. Thanks for asking. I don't visit this forum very often any more. How are you doing???

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #4
    Survivorship Care Plan

    This may not help you right now, LaCh, but by 2015 or 16, in order to retain certification, cancer programs will have to provide survivorship care planning. Shirley Stagner, RN, OCNP, Director of Survivorship at Lawrence Hospital Center, Bronxville, Westchester County, NY, spoke at a seminar I recently attended. There are now about 14,000,000 cancer survivors in the USA and most have no clue as to what comes next after treatment stops even when they continue to see an oncologist. "Difficulties related to the cancer treatment and/or to the experience of being diagnosed and treated for cancer are rarely discussed or given needed attention".

    difficulties related to the cancer treatment and/or to the experience of being diagnosed and treated for cancer are rarely discussed or given needed attention - See more at: http://www.nyplawrence.org/Programs-Services/Cancer-Care/Cancer-Survivorship-Program/From-Cancer-Patient-to-Cancer-Survivor.aspx#sthash.AgkPn1w0.dpufdifficulties related to the cancer treatment and/or to the experience of being diagnosed and treated for cancer are rarely discussed or given needed attentio

    The LHC program is available without charge for any cancer survivor, even those who did not receive treatment through the New York-Presbyterian system, though I believe that Ms Stagner may want to have a personal consultation with a client, so this might restrict applicants to the Greater-Metro Tri-state area. The plan can be a roadmap for the survivor and their loved ones as well as the oncologist and primary doctor: http://www.nyplawrence.org/Programs-Services/Cancer-Care/Cancer-Survivorship-Program.aspx

    "Services provided by the Cancer Survivorship Program at Lawrence include the creation of a Cancer Treatment Summary and; in collaboration with the survivor, a Post-treatment Cancer Survivorship Plan of Care that provides individualized guidance for:

       * Health Promotion
       * Prevention of Cancer and other Diseases
       * Management of Symptoms including Fatigue, Pain, Anxiety, Depression, Cognitive Impairment and Peripheral Neuropathy
       * Appropriate Surveillance for Cancer and other Health Problems"

    From Cancer Patient to Cancer Survivor: Lost in Transition: http://www.nyplawrence.org/Programs-Services/Cancer-Care/Cancer-Survivorship-Program/From-Cancer-Patient-to-Cancer-Survivor.aspx#sthash.AgkPn1w0.dpuf

    Services provided by the Cancer Survivorship Program at Lawrence include the creation of a Cancer Treatment Summary and; in collaboration with the survivor, a Post-treatment Cancer Survivorship Plan of Care that provides individualized guidance for:

    • Health Promotion
    • Prevention of Cancer and other Diseases
    • Management of Symptoms including Fatigue, Pain, Anxiety, Depression, Cognitive Impairment and Peripheral Neuropathy
    • Appropriate Surveillance for Cancer and other Health Problems
    - See more at: http://www.nyplawrence.org/Programs-Services/Cancer-Care/Cancer-Survivorship-Program.aspx#sthash.IW6lncVX.dpuf



  • LaCh
    LaCh Member Posts: 557
    #5
    Ouch_Ouch_Ouch said:

    Survivorship Care Plan

    This may not help you right now, LaCh, but by 2015 or 16, in order to retain certification, cancer programs will have to provide survivorship care planning. Shirley Stagner, RN, OCNP, Director of Survivorship at Lawrence Hospital Center, Bronxville, Westchester County, NY, spoke at a seminar I recently attended. There are now about 14,000,000 cancer survivors in the USA and most have no clue as to what comes next after treatment stops even when they continue to see an oncologist. "Difficulties related to the cancer treatment and/or to the experience of being diagnosed and treated for cancer are rarely discussed or given needed attention".

    difficulties related to the cancer treatment and/or to the experience of being diagnosed and treated for cancer are rarely discussed or given needed attention - See more at: http://www.nyplawrence.org/Programs-Services/Cancer-Care/Cancer-Survivorship-Program/From-Cancer-Patient-to-Cancer-Survivor.aspx#sthash.AgkPn1w0.dpufdifficulties related to the cancer treatment and/or to the experience of being diagnosed and treated for cancer are rarely discussed or given needed attentio

    The LHC program is available without charge for any cancer survivor, even those who did not receive treatment through the New York-Presbyterian system, though I believe that Ms Stagner may want to have a personal consultation with a client, so this might restrict applicants to the Greater-Metro Tri-state area. The plan can be a roadmap for the survivor and their loved ones as well as the oncologist and primary doctor: http://www.nyplawrence.org/Programs-Services/Cancer-Care/Cancer-Survivorship-Program.aspx

    "Services provided by the Cancer Survivorship Program at Lawrence include the creation of a Cancer Treatment Summary and; in collaboration with the survivor, a Post-treatment Cancer Survivorship Plan of Care that provides individualized guidance for:

       * Health Promotion
       * Prevention of Cancer and other Diseases
       * Management of Symptoms including Fatigue, Pain, Anxiety, Depression, Cognitive Impairment and Peripheral Neuropathy
       * Appropriate Surveillance for Cancer and other Health Problems"

    From Cancer Patient to Cancer Survivor: Lost in Transition: http://www.nyplawrence.org/Programs-Services/Cancer-Care/Cancer-Survivorship-Program/From-Cancer-Patient-to-Cancer-Survivor.aspx#sthash.AgkPn1w0.dpuf

    Services provided by the Cancer Survivorship Program at Lawrence include the creation of a Cancer Treatment Summary and; in collaboration with the survivor, a Post-treatment Cancer Survivorship Plan of Care that provides individualized guidance for:

    • Health Promotion
    • Prevention of Cancer and other Diseases
    • Management of Symptoms including Fatigue, Pain, Anxiety, Depression, Cognitive Impairment and Peripheral Neuropathy
    • Appropriate Surveillance for Cancer and other Health Problems
    - See more at: http://www.nyplawrence.org/Programs-Services/Cancer-Care/Cancer-Survivorship-Program.aspx#sthash.IW6lncVX.dpuf



    ouch ouch

    Thanks Ouch, I'll keep it in mind, might contact them, probably won't, (but you never know, I guess) and really, I just logged on here after a long absence to share my solution, not my problem. It's a minor thing, not a major one, I'm doing ok, feel  very lucky, haven't been to a doctor in a year and a half and don't plan to. I don't think about the cancer, assume that it's gone, and worry more-- and "worry" is a great overstatement--about recontracting the pertussis that that I had in 2011 than the cancer. The cancer isn't something I think of very much. It happened, I caught it early, took care of it and it's gone. That's how I see it. My feeling is that everybody has something and I have fatigue and have to pay attention to how and what I eat, do a few more little things, and aside from that, am pretty lucky. A very good friend of mine was diagnosed with cancer five months before I was. She died in June. She was doomed from her outset; I was lucky from mine. She had a cancer for which there is no cure; I had one that has a high rate of cure. I don't even think about the cancer anymore, and when I do, I think of my friend who had no chance at all.  So, really, I have nothing to complain about. I've been very lucky. That said, I've been hoping that someone, somewhere would begin to think of cancer patients as people, not as tumors, and that once the tumor is gone, the results of the barbaric treatments HAVE to be addressed. To abandond the patient after the tumor is been cured is unconscionable. It's typical of the mindset we have here. You swap one problem for a whole set of others, but the doctors think "success" because their job was done. I don't see it that way, so I'm glad that someone else doesn't as well. One doctor recommended a pharmaceutical drug to treat my gastroperesis but I don't take pharmaceutcal drugs. In any case, I found a better way with no unwanted side effects, drastically cheaper, and probably more effective.  But I think I might have presented my post in a misleading way, because you're the second person to remark about the problem, rather then the solution I found. 

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #6
    LaCh said:

    ouch ouch

    Thanks Ouch, I'll keep it in mind, might contact them, probably won't, (but you never know, I guess) and really, I just logged on here after a long absence to share my solution, not my problem. It's a minor thing, not a major one, I'm doing ok, feel  very lucky, haven't been to a doctor in a year and a half and don't plan to. I don't think about the cancer, assume that it's gone, and worry more-- and "worry" is a great overstatement--about recontracting the pertussis that that I had in 2011 than the cancer. The cancer isn't something I think of very much. It happened, I caught it early, took care of it and it's gone. That's how I see it. My feeling is that everybody has something and I have fatigue and have to pay attention to how and what I eat, do a few more little things, and aside from that, am pretty lucky. A very good friend of mine was diagnosed with cancer five months before I was. She died in June. She was doomed from her outset; I was lucky from mine. She had a cancer for which there is no cure; I had one that has a high rate of cure. I don't even think about the cancer anymore, and when I do, I think of my friend who had no chance at all.  So, really, I have nothing to complain about. I've been very lucky. That said, I've been hoping that someone, somewhere would begin to think of cancer patients as people, not as tumors, and that once the tumor is gone, the results of the barbaric treatments HAVE to be addressed. To abandond the patient after the tumor is been cured is unconscionable. It's typical of the mindset we have here. You swap one problem for a whole set of others, but the doctors think "success" because their job was done. I don't see it that way, so I'm glad that someone else doesn't as well. One doctor recommended a pharmaceutical drug to treat my gastroperesis but I don't take pharmaceutcal drugs. In any case, I found a better way with no unwanted side effects, drastically cheaper, and probably more effective.  But I think I might have presented my post in a misleading way, because you're the second person to remark about the problem, rather then the solution I found. 

    You weren't misleading...

    I recognized that you were dealing with your problem to your satisfaction. I only meant to point out to you, and to any other readers, that, thankfully, survivorship planning is coming and that people won't necessarily be left to drift once treatment is over. At least a person will have a document where every neccessity is spelled out for them and for their physicians as well - a plan for the future.

    You don't need to have intermittent HPV paps or cervical paps (if you are a woman)?

  • pializ
    pializ Member Posts: 508 Member
    #7
    Ouch_Ouch_Ouch said:

    You weren't misleading...

    I recognized that you were dealing with your problem to your satisfaction. I only meant to point out to you, and to any other readers, that, thankfully, survivorship planning is coming and that people won't necessarily be left to drift once treatment is over. At least a person will have a document where every neccessity is spelled out for them and for their physicians as well - a plan for the future.

    You don't need to have intermittent HPV paps or cervical paps (if you are a woman)?

    LaCh

    Hey! I think I understand your thinking on the subject, was just acknowledging the fact that you have had to spend time & effort in being creative to deal with the other 'bonus' treatment broughtyou, whereas I haven't had it so complicated. Took a long time for bowels to settle down in the morning (which made it tricky for work, & their understanding seemed to run out after 6 months even though I was doing my fulltime hours, but variablr start time). I have some hip problems & my energy levels not what they were. But I am here. My beautiful cocker spaniel, Meg, succumbed to bladder cancer earlier in the year, & now we have a 5 month old puppy who is rather manic. Another dog could never replace my lovely Meg but, life moves on after cancer. I have a friend who has MND, diagnosed just after we finished treatment.  She is my perspective. Now unable to speak, walk etc etc & communicating using an eye operated computer. I have nothing to complain about. it is what it is.

    Ouch Ouch Ouch. The need for aftercare is definitely an area of weakness in UK too. They have become good at treating cancer & now need to play catchup with post treatment issues. I can also see that some treatments for AC have moved on since I finished treatment 21 months ago. So less collateral damage too.

    Hibernation sounds a good idea. Hope your dog agrees lol.

  • mp327
    mp327 Member Posts: 4,440 Member
    #8
    LaCh

    Thanks for sharing the tips that you've discovered on your own to help with digestive issues post-treatment.  I've certainly had my share--just had another small intestinal backup a week ago, which thankfully passed on its own.  I continue to have problems with salads/raw veggies.  I recently was eating a lot of those because my husband is trying to lose weight, but I had to back off, as I could feel the onset of a backup coming on.  I hope you are doing well, aside from any side-effects that I hope you are managing.

  • LaCh
    LaCh Member Posts: 557
    #9
    Ouch_Ouch_Ouch said:

    You weren't misleading...

    I recognized that you were dealing with your problem to your satisfaction. I only meant to point out to you, and to any other readers, that, thankfully, survivorship planning is coming and that people won't necessarily be left to drift once treatment is over. At least a person will have a document where every neccessity is spelled out for them and for their physicians as well - a plan for the future.

    You don't need to have intermittent HPV paps or cervical paps (if you are a woman)?

    ouch

    The only reason I posted was to offer to others who might be experiencing similar issues to mine, solutions that have helped me. It was intended not to be about me, really, and maybe I could have crafted the post better, to reflect that.

    In any case, my plan for the future is to never see a doctor again. Part of that decision is based on medicine, doctors, our corrupt and predatory for-profit health care system, and how our culture informs those things. Part of it is economic. I have insurance and yet was hit with a co-pay that was utterly impossible for me to pay, also something based on politics, culture, and our for-profit health care system. A NYC pro bono attorney saved my neck from the chopping block, for which I will be grateful till the end of my days and beyond. I don't expect the cancer to recur, feel quite liberated and comfortable with my decision, aka 'plan for the future,' and ... as for the last thing... <smile> no. 

    Like I said earlier, we all have something, some people quite serious and debilitating, some life-altering or life-ending 'somethings'  and overall, the 'somethings' that I've had are curiously and consistantly not very bad. I feel quite lucky in that regard and although I'm not sure why is always seems so, am happy that it is.

     

     

  • LaCh
    LaCh Member Posts: 557
    #10
    pializ said:

    LaCh

    Hey! I think I understand your thinking on the subject, was just acknowledging the fact that you have had to spend time & effort in being creative to deal with the other 'bonus' treatment broughtyou, whereas I haven't had it so complicated. Took a long time for bowels to settle down in the morning (which made it tricky for work, & their understanding seemed to run out after 6 months even though I was doing my fulltime hours, but variablr start time). I have some hip problems & my energy levels not what they were. But I am here. My beautiful cocker spaniel, Meg, succumbed to bladder cancer earlier in the year, & now we have a 5 month old puppy who is rather manic. Another dog could never replace my lovely Meg but, life moves on after cancer. I have a friend who has MND, diagnosed just after we finished treatment.  She is my perspective. Now unable to speak, walk etc etc & communicating using an eye operated computer. I have nothing to complain about. it is what it is.

    Ouch Ouch Ouch. The need for aftercare is definitely an area of weakness in UK too. They have become good at treating cancer & now need to play catchup with post treatment issues. I can also see that some treatments for AC have moved on since I finished treatment 21 months ago. So less collateral damage too.

    Hibernation sounds a good idea. Hope your dog agrees lol.

    pializ

    But you see, your issues aren't the same as mine, but you have them. We all--or mostly all--have them, and we all find a way to cope. But in reality, these issues, from what amounts to truly babaric things to do to living tissue, are issues from a known cause. But people have digestion issues from a wide array of causes, and they have to cope with them, meeting with success and failure, no different from someone with digestion issues from a known cause like chemotherapy. The same can be said for hip problems, problems of fatigue, or anything else. Two salient points (salient for me, anyway) are that what defines a person is not what they experience in life but how they respond to those experiences, and two, my "issues" happen to be from chemotherapy, but that's not to say that as I get older, I wouldn't have had issues anyway.  Cancer needn't put that fact into a different reality, a different or  "special" category. All anybody can do is deal with his or her challenges; try to find a solution, co-exist with them, and accept them, whatever the cause, whatever the age, whatever the reason, with as much grace as possible.  That's just my  take, my own personal take, and anybody and everybody is free  to disagree with me, but (addressed to the forum at large) please keep the criticisms to a reasonable level.   I've felt unreasonaby and overly chastized here before, and it's really not necessary.

    On another note, my sincere condolences about your dog Meg. Really.  Losing a pet is extraordinarily painful, truly devastating. I really am sorry for your loss. As you already know, there is no magic bullet, no words really, that diminish that loss. 

    As for your way of keeping things in perspective, I also do the same. There are people who are truly suffering in the world, from a seeming limitless number of causes. I am, blessedly, fortunately, not one of them. I've had people respond to that my saying "yeah, but that doesn't make your issues any better," and my response to that is, "Yes. It does." Perspective is ALL it's about.  If I perceive my cancer as something horrible that defines me for the rest of my life, that's because that's my perspective. If I perceive my cancer as a major inconvenience that I needed to deal with, dealth  with and moved on, then that's what it is. To ME. Everyone has a different perspective. So yeah, my friend died in June from a cancer that she had zero chance of surviving. How can I reasonably, really complain because I have this ache or that pain or have trouble with digestion? I can't. I don't. Because to me, I have nothing about which to complain. My perspective comes from seeing what goes on in the world around me, from my friend who died to the endless atrocities and injustices in the world, and I think, "You have nothing to complain about." Because really, I don't.  Anyway, thanks for your words, and your take on things. Good luck with the new puppy. They're a handful, but all puppies grow into dogs, and hopefully, when she does, peace will return to your household.

  • LaCh
    LaCh Member Posts: 557
    #11
    mp327 said:

    LaCh

    Thanks for sharing the tips that you've discovered on your own to help with digestive issues post-treatment.  I've certainly had my share--just had another small intestinal backup a week ago, which thankfully passed on its own.  I continue to have problems with salads/raw veggies.  I recently was eating a lot of those because my husband is trying to lose weight, but I had to back off, as I could feel the onset of a backup coming on.  I hope you are doing well, aside from any side-effects that I hope you are managing.

    Mp3

    Thanks, yes, I'm doing well.  I think my best take-away (and give-away, if it seems sensible, and anyone else wants to subscribe to it) is to listen to your own body. It knows what it wants, better than doctors, dieticians, friends, relatives, well-wishers, or me. It knows what it can and can't do. What works for me, might be the most detrimental thing for someone else, and vice versa. But your body knows.  For my part, raw anything, carrots, lettuce, anything at all is a thing of the past. It would remain in my stomach till the end of time. That said, I don't miss any of it. I go the other way; I cook the s*** out of everything, break it down with heat, water and fire and then let my stomach have a go (with help from ginger) and keeping the amounts that I eat, reasonable in size.  That works for me, but that's not to say that it'll work for everyone.  That's biology. It's variable. It's all about "this is what we expect based on previous observation, based on our EXTENSIVE understanding of physiology, so this is what you have to do" vs. "but, this isn't what's happening to ME. Let me tell you what is." My own misadventures into the labyrinth of frustration have to do with not being listened to. With doctors who no longer use one of their most useful tools. Listening.  With a doctor who doesn't hear me because he's type, type, typing  like a hyperactive maniac into his laptop his next recommendation for an ultra expensive, unnecessary diagnostic test when all he needs to do is listen to what I'm trying to impart. So, although it isn't the ideal, and although I don't recommend it to anyone else, I now go it alone.  I'm comfortable with the decision, because although I hope to live a long life, if that isn't what happens, I'm ok with that too. But I also realize that most people don't share the sentiment with me and that's why everybody needs to find his or her own way, his or her own path.

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