Diet

Phoebesnow
Phoebesnow Member Posts: 600 Member
in Anal Cancer #1

I am six years out and still cannot get my diet under control.

 

i am gluten free due to my ataxia.

 

i cannot eat salad or raw vegetables or any vegetable that is not cooked to death. I cannot have pasta, bread or rice.

 

i have been living on chicken, salmon and over cooked broccoli and nuts (I grind them up to a paste) for 6 years.  I don't want to eat these foods anymore out of total boredom.  I have finally managed to gain some weight 3-6 pounds that I am trying to hold onto.  

 

Can anyone eat  whatever they want without serious repercussions?

 

is there any foods or recipes that you can recommend?

 

i find myself eating a lot of sugar to keep myself going and to keep the weight on.

 

i love vegetables!

 

Thank you!!!

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Phoebesnow

    I agree that diet issues can be quite frustrating post-treatment!  You may remember that I have had numerous episodes of intestinal blockages, one putting me in the hospital, which has led me to eliminate some foods from my diet.  I definitely stay away from raw fruits and veggies for the most part.  Like you, I cook my veggies to the brink of death to the mush stage.  They are not appetizing, but my fear of having more blockages outweighs the taste issues.  I would SO love to eat a nice salad now and then, but don't dare.  I eat chicken, fish and pork, but avoid beef, due to the blockage issues.  Beef takes a long time to break down in the gut, which is not good.  I am not one of those people who can now eat whatever I want like I used to.

    It is quite unfortunate that you also have to avoid gluten.  At least that is one issue I don't have.  I was tested it for it, but no intolerance was found.  

    I really wish I could offer some suggestions to help you, but I'm kind of in the same boat.  I eat the same things over and over.  A trip to the grocery store could be done blindfolded.  Perhaps someone else can give you (and me!) some helpful suggestions.

    Martha 

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited March 2017 #3
    Phoebesnow....

    Hi, 

    I'm wondering, are you (Martha, and others) able to tolerate potatoes?I believe they are naturally gluten free and could be used in a variety of ways.

    I fortunately have avoided any major issues (although I have an ostomy and that may actually be helpful to a point)... but, I do stay away from similar things to be safe. I do not eat raw veges which I too miss but have been able to enjoy an occasional small basic salad. Chicken and fish are what I prefer anyway. I am able to eat some raw fruits but try to stay away from too many seeds so usually things like blueberries, bananas, peaches, plums and very ripe pears. I limit straberries, kiwi, etc.

    I LOVE potatoes though.....baked, boiled, made into some wonderful soups, etc. Especially sweet potatoes, my favorite!

    What about dairy....maybe small amounts at a time but yogurt?

    These are the issues NEVER discussed prior to treatment, yet I suppose there was so much going on at that time, that it wouldn't have made much impact. 

    katheryn

  • mp327
    mp327 Member Posts: 4,440 Member
    edited March 2017 #4
    katheryn

    Potatoes are a must for me--I grew up on them!  Smile  Fortunately, they give me no problems, and like you, I will eat them fixed about any way imaginable.  I also eat sweet potatoes, actually more often than regular potatoes, due to their nutritional value.  So far, so good with those too.  I also do not eat fruits with small seeds.  I miss eating strawberries, but it's just not worth it.  Once in awhile I sneak a few of my husband's to eat on ice cream though. 

    I eat yogurt every day for breakfast with some fresh blueberries (when I can get them) and sprinkle a little raisin bran on top.  I used to eat Greek yogurt, but when I was diagnosed with chronic kidney disease, I was advised to limit my protein.  Greek yogurt is higher in protein than other yogurts, so I switched to Activia.  It contains quite a bit of sugar, but my body seems to handle that just fine.

    I agree that dietary issues post-treatment are not really touched on before or during treatment.  I was told I could eat whatever and I wanted--and after my bowels finally calmed down, I could for awhile.  However, whatever has caused my numerous episodes of blockages has scared me enough that there are just some foods, no matter how much I love them, that are just no longer worth eating.

    Martha

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #5
    Lucky

    Reading about the problems you guys have had with diet makes me feel lucky. Don't get me wrong, I still have diarrhea with some foods- and sometimes for no apparent reason. But I have been able to expand my diet over the last year to include fruits and salads. I'm still pretty careful not to eat too much salad but I can eat it in moderation. I do try to avoid lactose.I would be going nuts if I had to restrict my diet as much as you all have. I can't think of anything you guys forgot about except maybe rice?

    I agree we don't get told a lot about the ongoing GI problems from the get go. I'm still annoyed that I went to GI specialist who told me that yes the blood was from proctitis but the diarrhea wasn't from radiation!! He needs to get on one of these websites and read what real patients are experiencing! He said radiation was so focused that the only thing it would be affecting would be my rectum. Ha-ha! Tell that to the rest of my GI tract. He did a celiac test (negative) and thyroid test (normal), had nurse call me with results- nurse asked if I was still having trouble and I said yes and that was the last I heard from them!

     

    I think I'm kind of going thru an anger stage right now, I am so glad to be alive but also beginning to maybe mourn my old healthy self. The damage to the vagina kind of has me freaked out. I worry the stenosis will get worse. I can't feel my cervix at all anymore. My IUD is scarred in there somewhere and I suppose will have to be dug (gulp) out at some point. I'm going to a gyn who specializes in pelvic pain and hope to get him to remove IUD next time I'm under anesthesia for anoscopy. Not sure why but I have this aversion to using dilators. I just want the IUD out, I want to be able to get a Papp test ( cervix is so scarred last attempt didn't yield enough cells to test) and get gyn exam comfortably.I'm still having trouble with rectal spasms and those are painful. Any advice? sorry didn't mean to hijack this thread and it's not working on my iPhone to copy and paste into a new thread.

  • mp327
    mp327 Member Posts: 4,440 Member
    edited March 2017 #6
    Mollymaude

    I'm glad to hear that you don't have some of the issues I have with diet.  As for the radiation not being the cause of diarrhea, as the GI specialist told you, I had to just shake my head.  He obviously isn't aware that the radiation takes in a large portion of the pelvic area at the beginning of treatment before the treatment field is eventually reduced to aim directly at the tumor, meaning there is a high probability of causing damage to the intestinal tract.  As someone who has had numerous blockages, I would sure like to set him straight on that!

    I think a lot of us go through a bit of anger about all that has happened to us.  Things are definitely different for me than prior to treatment.  I gave up on the regular use of dilators.  It certainly wasn't doing anything to help my sex life.  At least I don't have the complication of having an IUD like you do.  I hope that you can have that removed while under anesthesia.  As for rectal spasms, I have not experienced those, so I'm afraid I have no advice for that.

    I think part of any frustrations we have is that doctors just do not understand what post-treatment life is like.  I hope you keep after your doctors for any help you need.  I wish you all the very best.

    Martha 

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2017 #7
    Martha

    Thanks for the validation about my anger and frustration.  I just passed the one year mark so I'm getting lots of people congratulating me on that, but you can't really tell them or explain what the after effects are. They think "cancer gone= no problems". I'm not blaming them, how can anyone know? I certainly didn't!

  • mp327
    mp327 Member Posts: 4,440 Member
    edited March 2017 #8
    Mollymaude

    You are spot on with your comments.  People do not understand what it's like to be a survivor.  The memories and post-treatment side effects definitely impact our lives.

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited March 2017 #9
    Mollymaude said:

    Martha

    Thanks for the validation about my anger and frustration.  I just passed the one year mark so I'm getting lots of people congratulating me on that, but you can't really tell them or explain what the after effects are. They think "cancer gone= no problems". I'm not blaming them, how can anyone know? I certainly didn't!

    Mollymaude.....

    Hi,

    You are so right, unless someone is in your shoes (and no one can be in the "exact" spot) it is impossible for them to understand. We sure come close here though, so just another reason I have found this forum so very important to life long recovery as it is on-going and a process that seems to evolve and change over time. 

    When I spoke at a recent relay for life, in my speech I mentioned the frustration of wanting even close family members and friends to "just get it" (meaning to understand, NOT get cancer) yet, I said "I hope they never do" because the only way to really get it would be to get cancer. I try to be mindful of this in regards to others situations in life, I try not to assume to know what they are actually going through, but rather to just be there, learn with an open mind, and offer support even if it doesn't appear to be needed.

    I will congratulate you on passing that one year mark, it IS an accomplishment, but follow with ..... please stay in touch here as you move ahead, because we do have an understanding of just what that means and it is easier when we all move forward together!

    Be well.......

    katheryn

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    edited March 2017 #10
    Diet

    Yes it is good to hear from others dealing with these issues and the understanding that is offered does soothe my soul.  I recently had someone compare my cancer treatment to someone else's saying I got off easy.  This is someone who knows exactly what I am going thru but has no compassion only solutions that work for normal people.

    I went shopping yesterday and bought some gluten free crust and tonight I will take my first go at making a pizza.  I also bought a lot of other stuff like scallops for variety from my chicken and fish.  I can have white potatoes, but no sweet and I love them so.  No rice for me!

     

    Of course after buying all this wonderful food, I had an attack of bad diarrhea with terrible cramps so that I threw up.  I haven't eaten anything since yesterday at 2 pm.  I was home yesterday and that is the only reason I was brave enough to eat during the day.   I usually eat nothing until I come home from work.

     

    i am glad some people have an easier time than others.  I just wonder why?

     

     

     

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #11
    Phoebesnow

    So sorry to hear you were sick and I hope you are feeling better!  Enjoy the pizza!

    Martha

  • TraceyUSA
    TraceyUSA Member Posts: 316
    edited March 2017 #12
    Low Residue

    Have any of your tried a low residue diet?  My radiologist put me on it during treatment and it was very limited but I think it was beneficial.  

  • mp327
    mp327 Member Posts: 4,440 Member
    #13
    Tracey

    I have had to do low residue after intestinal blockages, of which I've had numerous episodes.  One thing to keep in mind, however, is that such a diet is not advised to be long term.

    Martha

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2017 #14
    Phoebesnow

    The gluten free part would be really hard for me. At least gluten free sections in grocery store have more variety than they used to. I wonder if you could tolerate quinoa? I didn't google to see if it's gluten free. I hope your pizza experiment went well and some of the variety you tried to buy works out.

    And thanks to both Martha and Katheryn for your constant support.

  • mp327
    mp327 Member Posts: 4,440 Member
    edited March 2017 #15
    Mollymaude

    Thank you and I thank you for your support here for me and others.

    It is true that there are many more options in the grocery store for gluten-free products.  I, luckily, tested negative for Celiac's, so that's one section of the store I can just cruise on by.

    Martha

  • mxperry220
    mxperry220 Member Posts: 496 Member
    #16
    Probiotic

    I take a probiotic capsule daily(Culturelle).  It seems to have helped with my digestive system.  I am 8 plus years post treatment(Stage 2). 

    Mike

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    edited March 2017 #17
    Diet

    You are so lucky to cruise right on by the gluten free products.  I do to because they are awful!  I have found a cake that I like and I am soooo very grateful for that.  Corn products are gluten free and they are pretty good, tortillas and chips.  My faves!

     

    i think I have a virus so I havent been eating for 2 days. I am looking forward to trying pizza when I feel better.

     

    Mike can you eat salad and normally cooked veggies?

     

  • orator1
    orator1 Member Posts: 2
    #18
    diet

    I had a resection in 2012, and had to wear a bag for about 9 months.  I had that reversed.  Initially there were numerous problems, loose bowels, lack of control, gas etc.  It has gotten better but still have episodes.  Finally found the Stanford IBS diet.  You can locate it doing a google search.  It works for me.  I do not eat any breads because of the gluten problems that seem to bother me, but never did before the surgery.  My doctor says I'm doing fine, and problems do occur with "take downs," some more than others, and some people never seem to adjust.  I had a colonscopy last August and my surgeon says I do not need another one until 2020, although I often feel I should have one more often -- but that might be just my own sence of paranoia as  result of having cancer once. 

     

  • mxperry220
    mxperry220 Member Posts: 496 Member
    #19
    Phoebesnow said:

    Diet

    You are so lucky to cruise right on by the gluten free products.  I do to because they are awful!  I have found a cake that I like and I am soooo very grateful for that.  Corn products are gluten free and they are pretty good, tortillas and chips.  My faves!

     

    i think I have a virus so I havent been eating for 2 days. I am looking forward to trying pizza when I feel better.

     

    Mike can you eat salad and normally cooked veggies?

     

    Diet

    Other than salads I can eat most anything including fresh fruits.  I try to limit my intake of lettuce type produce.  I do have lettuce on hamburgers.

    Mike

  • rlr000dc
    rlr000dc Member Posts: 51
    #20
    Mollymaude said:

    Martha

    Thanks for the validation about my anger and frustration.  I just passed the one year mark so I'm getting lots of people congratulating me on that, but you can't really tell them or explain what the after effects are. They think "cancer gone= no problems". I'm not blaming them, how can anyone know? I certainly didn't!

    so the same when we say

    so the same when we say cancer free no one understands! Im feeling the same way.

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