**UPDATE** ..on meds for missing digestive enzyme...

idlehunters
idlehunters Member Posts: 1,787 Member
edited March 2014 in Colorectal Cancer #1
The Onc gave me a script for some caps called CREON. WOW.... has it ever worked!!!! If any of you are having diarrhea problems...get your enzymes checked. It was the very last thing they checked on me and thats what it ended up being. I am shocked at the difference. How can 1 little enzyme make SUCH a difference??? Don't know..but it sure as SHeeT does...literally!!!

Its so weird tho that I still feel there is something wrong.... NOW because I am pooping 1x a day or less... I mean THAT is normal..not pooping 20 times a day..and runny water! I am so use to abnormal that I forgot what normal really is. I am scared to get use to normal because surely it won't stay like that...oh well, for now..it's a God send. Gee, who would have thought that one decent poop a day would be so rewarding??? I can't help but get excited every time I have a normal poop...it's so stupid it's funny!! LOL.

Funny..but true story>>>> My 2 1/2 year old granddaughter came over the other day. She is potty training and we both MUST go together...her on her pot..me on mine. She makes me listen to her tinkle and then she HAS to hear mine. The other day she pooped on potty... well..guess who had to follow suit??? yep... LUCKILY...it was MY TIME...and it happened...Gma pooped! ...Baby girl starts clapping as we are both looking at it in amazement and she says "Good Grandma.. now you get a candy corn!!!" LMAO.... for real??? A good poop and candy corn too.... oh my gosh...ain't life grand!!!! LOL

Jennie

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #2
    Awesome
    So glad that this medication is helping you. Next time for my blood draw is not until April but I'll ask my doctor to give me a slip for that and add to my regular draw. I'm not sure if that is my problem because it starts out pretty normal and then gets runny towards the 10th poop. Hoping that you continue on your daily poop :) Glad you are feeling better.

    Kim
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #3
    Congrats all around. Takes a load off ones' mind.

    Creon is a "pancrealipse" prescription product mentioned earlier about the FDA approvals and re-registeration.

    With the suppport and advice from some more rare MD/DOs who did extensive outside work, we've done well with generic "pancreatin", the much cheaper supplement, as well as other digestive and healing support components like glutamine, niacin, C, betaine HCl, pepsin and ox bile, after surgery and during continuous oral chemo.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #4
    tanstaafl said:

    Congrats all around. Takes a load off ones' mind.

    Creon is a "pancrealipse" prescription product mentioned earlier about the FDA approvals and re-registeration.

    With the suppport and advice from some more rare MD/DOs who did extensive outside work, we've done well with generic "pancreatin", the much cheaper supplement, as well as other digestive and healing support components like glutamine, niacin, C, betaine HCl, pepsin and ox bile, after surgery and during continuous oral chemo.

    Thanks Kim! and tanstaafl....
    tanstaafl..... also thanks for info on D2/D3..... very VERY informative and helpful...you rock!

    Jennie
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #5
    Funny!
    *LOL* That is so precious! Grandchildren make life so special, don't they?

    *hugs*
    Gail
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #6
    question
    Hi Jennie,

    I'm so glad the medicine is helping you. That's pretty funny about your granddaughter!
    What kind of test did they do to check your digestive enzymes? I'm assuming it's a bloodtest, but if you can find out the specific name or look on your labresults for it and see what it's called, that would be helpful. I would like to mention it to my onc at my next appt in a couple of weeks. Thanks!

    Lisa
  • khl8
    khl8 Member Posts: 807
    #7
    Jennie,
    I was really
    Jennie,
    I was really surprised to see this post, the reason why is that My 18 year old son has cystic fibrosis and has been and needs to take digestive enzymes each and every time he eats. I never thought to put the two together! CF patients are missing the natural enzyme as the duct from the pancreas that carries this enzyme is blocked by thick mucus so the need to have the enzyme delivered via pill form. As for those of us with colorectal cancer and cpooping issues this makes alot of sense now.

    Kathy
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #8
    lisa42 said:

    question
    Hi Jennie,

    I'm so glad the medicine is helping you. That's pretty funny about your granddaughter!
    What kind of test did they do to check your digestive enzymes? I'm assuming it's a bloodtest, but if you can find out the specific name or look on your labresults for it and see what it's called, that would be helpful. I would like to mention it to my onc at my next appt in a couple of weeks. Thanks!

    Lisa

    Hey Lisa..
    Yes, it was a blood test and I will check for the specific name and get back to you asap. Take care!

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #9
    khl8 said:

    Jennie,
    I was really
    Jennie,
    I was really surprised to see this post, the reason why is that My 18 year old son has cystic fibrosis and has been and needs to take digestive enzymes each and every time he eats. I never thought to put the two together! CF patients are missing the natural enzyme as the duct from the pancreas that carries this enzyme is blocked by thick mucus so the need to have the enzyme delivered via pill form. As for those of us with colorectal cancer and cpooping issues this makes alot of sense now.

    Kathy

    Kathy
    When Onc gave me these meds I of course had to research them. I seen that those were given to CF patients but it did not say why. Thanks for the info. Take care!

    Jennie
  • newperson
    newperson Member Posts: 76
    #10
    tanstaafl said:

    Congrats all around. Takes a load off ones' mind.

    Creon is a "pancrealipse" prescription product mentioned earlier about the FDA approvals and re-registeration.

    With the suppport and advice from some more rare MD/DOs who did extensive outside work, we've done well with generic "pancreatin", the much cheaper supplement, as well as other digestive and healing support components like glutamine, niacin, C, betaine HCl, pepsin and ox bile, after surgery and during continuous oral chemo.

    questions about supplements during chemo
    Dear tanstaafl, are you taking glutamine, niacin, C, and other things during chemo? Aren't they interfere with chemo? What is the dosage of C you take? I really need info to ease my fear of taking supplements while doing chemo. We consulted a naturopathic doctor last week, she suggested my husband take fish oil, 16g per day of C powder, botanical treasures powder and 3-detoxification kit. I'm worried cause he is still on chemo. Today his oncology practitioner nurse just told us not to take vitamins (except multi-vitamins) during chemo. Thanks for your help. - Lucy
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #11
    newperson said:

    questions about supplements during chemo
    Dear tanstaafl, are you taking glutamine, niacin, C, and other things during chemo? Aren't they interfere with chemo? What is the dosage of C you take? I really need info to ease my fear of taking supplements while doing chemo. We consulted a naturopathic doctor last week, she suggested my husband take fish oil, 16g per day of C powder, botanical treasures powder and 3-detoxification kit. I'm worried cause he is still on chemo. Today his oncology practitioner nurse just told us not to take vitamins (except multi-vitamins) during chemo. Thanks for your help. - Lucy

    Yes, my wife now takes many extra nutrients, in large(r) amounts, looks surprisingly fit since she surprised the nurses, walked out of the hospital two days early, and went to the mall. Her chemo is not your chemo, so the list of compatible nutrients may be different - no oxaliplatin was used here. We also maintain a dual doctor structure, supplemented with loads of research.

    We used that dry mix of glutamine/lysine/glucosamine+C+niacinamide+chelated Mg, Zn (placed dry, eventually swished and swallowed), as well as infused vitamin C, to help restore 5FU related mucositis/stomatitis damage, often overnight or in a day, per various technical literature. Some patients are much less tolerant of 5 FU drugs and/or synthetic (common) folate, so individualized (multi)vitamin prescription for the patient can become necessary. In our case, replacement of synthetic folate with folinate (leucovorin) and elimination of enriched folate in the diet appeared best even for the mildest dose of oral 5FU prodrug, along with adding PSK, a special Coriolus versicolor extract, a chemo combination approved in Japan that may also help CBC blood results.

    In some states, oncologically trained naturopaths collaborate with regular oncologists.

Discussion Boards