My young daughter has Ulcerative Colitis

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  • polaris_x
    polaris_x Posts: 13,559
    Hugh Freaking Dillon wrote:
    my wife asked a GI doc yesterday about the SCD and she responded with a resounding no. I don't get it. it's not like fucking atkins where you eat only bacon and no carbs or something stupid. it's just eating what humans have naturally evolved to digest. again, I've only read a minimal amount. I need to research more. But of course my wife agreed that eating no grains is terrible.

    what was her reasoning!? ... i'm not a medical professional but i do have my WFR and i've seen my share of hospitals and the one thing I believe in is that as complicated as the human body and condition is - often many things are really quite simple ... as a GI specialist - she should be able to explain why that diet would not work and it should make sense to you ... you need to advocate for your daughter and the best thing you can do is to do your own research and ask as many questions as is necessary ... for sure, you need to put a little bit of trust and faith into the medical professionals but if ultimately their priority is the well being of your daughter then they should treat your contribution as a positive ...

    my very good friend has a young infant with medical issues and she has made astounding progress (not without setbacks) but that is because my friend is active in her care and not just simply let the doctors do as they should ...

    it's a fine line but doctors at hospitals see a lot of patients and not everyone is the same ...
  • Hugh Freaking Dillon
    Hugh Freaking Dillon Posts: 14,010
    polaris_x wrote:
    what was her reasoning!? ... i'm not a medical professional but i do have my WFR and i've seen my share of hospitals and the one thing I believe in is that as complicated as the human body and condition is - often many things are really quite simple ... as a GI specialist - she should be able to explain why that diet would not work and it should make sense to you ... you need to advocate for your daughter and the best thing you can do is to do your own research and ask as many questions as is necessary ... for sure, you need to put a little bit of trust and faith into the medical professionals but if ultimately their priority is the well being of your daughter then they should treat your contribution as a positive ...

    my very good friend has a young infant with medical issues and she has made astounding progress (not without setbacks) but that is because my friend is active in her care and not just simply let the doctors do as they should ...

    it's a fine line but doctors at hospitals see a lot of patients and not everyone is the same ...

    I don't think she gave any concrete reason. except that no diet is a cure, and that kids need all good foods (including grains) and cutting anything out is a mistake. unfortunately, I wasn't at this one, my wife was, and if you've got a degree, she automatically believes every word you say. just suggesting this to her yesterday got me a "are you crazy?" look. but I don't know if giving her 3 different meds 5 times a day is the right course. how hard is that going to be on her little body. steroids for a 7 year old girl? I hate that north america cures everything with meds and not nature. we need some more progressive people in the medical community with very loud voices.
    Gimli 1993
    Fargo 2003
    Winnipeg 2005
    Winnipeg 2011
    St. Paul 2014
  • polaris_x
    polaris_x Posts: 13,559
    Hugh Freaking Dillon wrote:
    I don't think she gave any concrete reason. except that no diet is a cure, and that kids need all good foods (including grains) and cutting anything out is a mistake. unfortunately, I wasn't at this one, my wife was, and if you've got a degree, she automatically believes every word you say. just suggesting this to her yesterday got me a "are you crazy?" look. but I don't know if giving her 3 different meds 5 times a day is the right course. how hard is that going to be on her little body. steroids for a 7 year old girl? I hate that north america cures everything with meds and not nature. we need some more progressive people in the medical community with very loud voices.

    yikes ...

    i know you are in a tough spot and i say the following only in the interests of your daughter and her only ... doctors are not always right nor are they immune to being swayed by pharmaceuticals and special interests (see wheat board and milk board) ... you need to advocate for her and the best way is to do as much research as possible ... think critically and ask the questions you want answers to ...

    i'm not saying to ignore her medical team just simply that from here on out - you are part of that team and you need to have a voice and you need to be heard ... your daughter has a condition that is the result of an inflammation of the bowel ... that means something has caused that inflammation ... it isn't a huge stretch to consider food as a primary reason ... if diet isn't the first response to this - something is wrong ...
  • marcos
    marcos Posts: 2,112
    So sorry to hear that, I too suffer such an ailment but am obviously much older. She will be in my positive thoughts & prayers.
  • Hugh Freaking Dillon
    Hugh Freaking Dillon Posts: 14,010
    polaris_x wrote:
    yikes ...

    i know you are in a tough spot and i say the following only in the interests of your daughter and her only ... doctors are not always right nor are they immune to being swayed by pharmaceuticals and special interests (see wheat board and milk board) ... you need to advocate for her and the best way is to do as much research as possible ... think critically and ask the questions you want answers to ...

    i'm not saying to ignore her medical team just simply that from here on out - you are part of that team and you need to have a voice and you need to be heard ... your daughter has a condition that is the result of an inflammation of the bowel ... that means something has caused that inflammation ... it isn't a huge stretch to consider food as a primary reason ... if diet isn't the first response to this - something is wrong ...

    thanks polaris. I have never been the type of person to believe someone just because they have a PhD. Everything is opinions based on research. Including this diet. And even her doctors admit there is no universal treatment for UC, so it's interesting to me that they'd so quickly dismiss something that doesn't come from them. Her specialist even told us that he and the most respected GI specialist in Canada disagree on some of the treatments he is prescribing her (her doc thinks stopping the meds when she's in remission is a mistake, this "big guy" is of the opposite opinion). So I'm going to look into that too.

    I have heard so many stories already of people not taking any meds and being symptom free for years. So that's a positive. I guess this is my new purpose. I'm going to do all I can and spend every free moment helping my daughter through this and fighting for her health.

    She is, after all, my little princess.
    Gimli 1993
    Fargo 2003
    Winnipeg 2005
    Winnipeg 2011
    St. Paul 2014
  • shetellsherself
    shetellsherself New Jersey Posts: 8,835
    Hugh Freaking Dillon wrote:
    polaris_x wrote:
    yikes ...

    i know you are in a tough spot and i say the following only in the interests of your daughter and her only ... doctors are not always right nor are they immune to being swayed by pharmaceuticals and special interests (see wheat board and milk board) ... you need to advocate for her and the best way is to do as much research as possible ... think critically and ask the questions you want answers to ...

    i'm not saying to ignore her medical team just simply that from here on out - you are part of that team and you need to have a voice and you need to be heard ... your daughter has a condition that is the result of an inflammation of the bowel ... that means something has caused that inflammation ... it isn't a huge stretch to consider food as a primary reason ... if diet isn't the first response to this - something is wrong ...

    thanks polaris. I have never been the type of person to believe someone just because they have a PhD. Everything is opinions based on research. Including this diet. And even her doctors admit there is no universal treatment for UC, so it's interesting to me that they'd so quickly dismiss something that doesn't come from them. Her specialist even told us that he and the most respected GI specialist in Canada disagree on some of the treatments he is prescribing her (her doc thinks stopping the meds when she's in remission is a mistake, this "big guy" is of the opposite opinion). So I'm going to look into that too.

    I have heard so many stories already of people not taking any meds and being symptom free for years. So that's a positive. I guess this is my new purpose. I'm going to do all I can and spend every free moment helping my daughter through this and fighting for her health.

    She is, after all, my little princess.

    I couldn't agree more polaris_x and awesome that you are ready to advocate for your daughter HFD. In my experience GI docs want to treat the symptoms not find the cause. Again not all but until we found the right doc I often felt like I was talking to a brick wall and occasionally made to feel like I was actually harming my child. Many of them simply don't understand nutrition and just want the quick fix.

    Edited to add... Also the quick fix is appealing to patients/parents bc you think the suffering will stop quicker. It's not a long term solution though. You just have to keep coming back for more meds. Dietary changes are hard initially but in my opinion are often necessary for long term wellness
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  • polaris_x
    polaris_x Posts: 13,559
    Hugh Freaking Dillon wrote:
    I guess this is my new purpose. I'm going to do all I can and spend every free moment helping my daughter through this and fighting for her health.

    She is, after all, my little princess.

    yes ... you are part of that medical team now!

    and ditto to everything shetellsherself has written ... you might need to reconsider who is part of that team ...

    many ailments could be fixed in today's society through dietary changes ... start there ... i'm about to lead a trip to Iceland and 6 of my 14 participants have gluten and/or dairly intolerances ...
  • oceaninmyeyes
    oceaninmyeyes Posts: 4,646
    shetellsherself wrote:
    Hugh Freaking Dillon wrote:
    polaris_x wrote:
    yikes ...

    i know you are in a tough spot and i say the following only in the interests of your daughter and her only ... doctors are not always right nor are they immune to being swayed by pharmaceuticals and special interests (see wheat board and milk board) ... you need to advocate for her and the best way is to do as much research as possible ... think critically and ask the questions you want answers to ...

    i'm not saying to ignore her medical team just simply that from here on out - you are part of that team and you need to have a voice and you need to be heard ... your daughter has a condition that is the result of an inflammation of the bowel ... that means something has caused that inflammation ... it isn't a huge stretch to consider food as a primary reason ... if diet isn't the first response to this - something is wrong ...

    thanks polaris. I have never been the type of person to believe someone just because they have a PhD. Everything is opinions based on research. Including this diet. And even her doctors admit there is no universal treatment for UC, so it's interesting to me that they'd so quickly dismiss something that doesn't come from them. Her specialist even told us that he and the most respected GI specialist in Canada disagree on some of the treatments he is prescribing her (her doc thinks stopping the meds when she's in remission is a mistake, this "big guy" is of the opposite opinion). So I'm going to look into that too.

    I have heard so many stories already of people not taking any meds and being symptom free for years. So that's a positive. I guess this is my new purpose. I'm going to do all I can and spend every free moment helping my daughter through this and fighting for her health.

    She is, after all, my little princess.

    I couldn't agree more polaris_x and awesome that you are ready to advocate for your daughter HFD. In my experience GI docs want to treat the symptoms not find the cause. Again not all but until we found the right doc I often felt like I was talking to a brick wall and occasionally made to feel like I was actually harming my child. Many of them simply don't understand nutrition and just want the quick fix.

    Edited to add... Also the quick fix is appealing to patients/parents bc you think the suffering will stop quicker. It's not a long term solution though. You just have to keep coming back for more meds. Dietary changes are hard initially but in my opinion are often necessary for long term wellness

    I agree with both of you. Finding the right doc was key for us in dealing with my son's gu problems. And the more reading and research you do on your own will make you a much better advocate for your daughter. As my husband often says, "This parenting thing isn't how it appeared in the brochure. . . " :lol: It can be such a struggle and feel like you are hitting your head against a brick wall at times, but when your baby is healthy and back to feeling good again, it will all be worth it. It took almost 2 years and three tries to find the right doc and treatment for us; keep fighting the good fight.
    And the sun it may be shining . . . but there's an ocean in my eyes
  • shetellsherself
    shetellsherself New Jersey Posts: 8,835
    here's a fixed link to the info on GAPS diet...again great book that explains the science behind why the nutritional changes work

    http://gapsdiet.com/
    5/3/92 Omaha, NE
    6/19/95 Red Rocks
    9/11/98 MSG
    11/19/12 EV solo Tulsa
    7/19/13 Wrigley 10/19/13 Brooklyn 2 10/21/13 Philly 1 10/22/13 Philly 2 10/25/13 Hartford
    10/08/14 Tulsa 10/09/14 Lincoln
    9/26/15 NYC Global Citizen
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  • Hugh Freaking Dillon
    Hugh Freaking Dillon Posts: 14,010
    I left work after half a day today. I couldn't stop crying. Although, after a nap and ANOTHER appointment for her, she is energetic, eating, happy, and talkative.

    Can't ask for much more than that. One smile at a time.
    Gimli 1993
    Fargo 2003
    Winnipeg 2005
    Winnipeg 2011
    St. Paul 2014
  • Hugh Freaking Dillon
    Hugh Freaking Dillon Posts: 14,010
    jesus christ. her specialist wants to put her on ANOTHER medication, omeprozole. she currently takes prednisone once a day, pentasa 4 times a day (3 times orally and 1 time rectally-yeah, that's fun). this is getting fucking ridiculous. the new one is supposed to protect her tummy from the prednisone, since she's on such a high does of it.

    what the fuck is all this shit going to do to her little body?
    Gimli 1993
    Fargo 2003
    Winnipeg 2005
    Winnipeg 2011
    St. Paul 2014
  • shetellsherself
    shetellsherself New Jersey Posts: 8,835
    So sorry she is going through this and you as her dad also. It's so tough to be the parent of a kid with any kind of illness/condition. Stay strong and question the docs at every turn. Try to go in armed with info and if you are not satisfied with the answers ask others. Try to find other parents who live in the area with kids with similar struggles. I have a whole support group of parents in my area who have helped our kids through digestive/gut disorders. We have been an invaluable resource to each other in providing info, support with the dietary changes, recipes, doctor recommendations, a shoulder to cry on and peers for our kids so that they see they are not alone. My heart goes out to you bc I have been there.
    5/3/92 Omaha, NE
    6/19/95 Red Rocks
    9/11/98 MSG
    11/19/12 EV solo Tulsa
    7/19/13 Wrigley 10/19/13 Brooklyn 2 10/21/13 Philly 1 10/22/13 Philly 2 10/25/13 Hartford
    10/08/14 Tulsa 10/09/14 Lincoln
    9/26/15 NYC Global Citizen
    4/16/16 Greenville 4/28/16 Philly 1 4/29/16 Philly 2 5/1/16 MSG 1 5/2/16 MSG 2 8/7/16 Fenway 2 8/20/16 Wrigley 1
    4/7/17 RRHOF New York City
    9/2/18 Fenway 1 9/4/2018 Fenway 2
    9/18/21 Asbury Park
    2/4/22 EV Earthlings NYC 2/6/22 EV Earthlings Newark 9/11/22 MSG 9/14/22 Camden
    9/3/24 MSG 1 9/4/24 MSG 2 9/7/24 Philly 1 9/9/24 Philly 2
  • lukin2006
    lukin2006 Posts: 9,087
    Sorry to hear that your daughter is going through this. Have you thought of consulting a naturopath and a dietician?
    I have certain rules I live by ... My First Rule ... I don't believe anything the government tells me ... George Carlin

    "Life Is What Happens To You When Your Busy Making Other Plans" John Lennon
  • donnaruhl
    donnaruhl Posts: 2,157
    FrankieG wrote:
    Sorry to hear the bad news but looking on the bright side, atleast she has been diagnosed. It took my Dr. more than 9 months to diagnose me (Crohns, in 2002 when I was 11), which really sucked because I was having some horrible pain back then. (I am 22 now)


    My first tip: Don't take any advice as perfect truth. Some things people swear-by will not work. Some things people swear won't work will work. She needs to try everything for a reasonable amount of time to determine if she likes it herself or not.

    Work carefully with her GI to fight the pain, which is something I wish I had done more back then. I just figured I had to live with it.. If you see a medication starting to stop working, change medication. Fight this thing aggressively.

    I have found that diets are more hassle than they are worth, imo. I have learned to avoid certain foods but
    dont follow a specific no gluten, SCD, e

    Sign her up on https://crohnology.com/ . This is an awesome facebook-like website that other people with Crohns and UC can share stories, ask questions, find what treatments work, etc.

    Having UC is better than having Crohn's. Crohn's is inflammation anywhere in the digestive tract, so to be completely cured, I would have to remove my entire digestive tract, which isn't possible. UC is only inflammation in the colon, which if removed, you can still live.

    If you have any more specific questions I would be glad to answer them as best I could having Crohns and not UC.[/quo

    Were you diagnosed with UC before they found out that it was Crohn's? curious.
  • donnaruhl
    donnaruhl Posts: 2,157
    I am truly sorry that this has happened to your precious little girl. Her Aunt will be her rock,along with you and your wife. Show her strength and she will be strong.Is she old enough to grasp the concept?If not,She's well aware that somethings wrong. Maybe they have a Children's book about UC that she can read so that she's not so scared.I know nothing about this disorder,But I know how you must feel. Thoughts and Prayers.
  • Hugh Freaking Dillon
    Hugh Freaking Dillon Posts: 14,010
    donnaruhl wrote:
    I am truly sorry that this has happened to your precious little girl. Her Aunt will be her rock,along with you and your wife. Show her strength and she will be strong.Is she old enough to grasp the concept?If not,She's well aware that somethings wrong. Maybe they have a Children's book about UC that she can read so that she's not so scared.I know nothing about this disorder,But I know how you must feel. Thoughts and Prayers.

    thanks. she's 7 as of last week, so I think she's getting it. she's even telling me "I don't have a problem taking my pills anymore" like she's aware of her own little victories. it's so sweet and so sad and so angering all at the same time. I just keep thinking "this is not something a 7 year old should have to be proud of". But I'll drive myself nuts thinking about that all the time. I already have.

    for 7 years of being a parent, all through any struggles my wife and I have had, all I've ever said to her was "hey, we have two beautiful and healthy girls, look at the bright side". so one of them isn't healthy. so it can be hard to know what to cling to in times of uncertainty now.

    My mom actually contact crohn's and colitis of Canada and they are sending her brochures, and she found this little book that we may want to read to her. it's called "Toilet Paper Flowers".

    http://www.ccfc.ca/atf/cf/%7B282E45D9-A ... rs2006.pdf

    I'm so confused right now because I am reading that her type of colitis, pan colitis, is the most severe you can get, yet she's doing so well so far (she also had croup last week, so that may have been the majority of her lethargy). Maybe she's just that freaking tough. :)
    Gimli 1993
    Fargo 2003
    Winnipeg 2005
    Winnipeg 2011
    St. Paul 2014
  • Hugh Freaking Dillon
    Hugh Freaking Dillon Posts: 14,010
    FrankieG wrote:
    Sorry to hear the bad news but looking on the bright side, atleast she has been diagnosed. It took my Dr. more than 9 months to diagnose me (Crohns, in 2002 when I was 11), which really sucked because I was having some horrible pain back then. (I am 22 now)


    My first tip: Don't take any advice as perfect truth. Some things people swear-by will not work. Some things people swear won't work will work. She needs to try everything for a reasonable amount of time to determine if she likes it herself or not.

    Work carefully with her GI to fight the pain, which is something I wish I had done more back then. I just figured I had to live with it.. If you see a medication starting to stop working, change medication. Fight this thing aggressively.

    I have found that diets are more hassle than they are worth, imo. I have learned to avoid certain foods but dont follow a specific no gluten, SCD, etc.

    Sign her up on https://crohnology.com/ . This is an awesome facebook-like website that other people with Crohns and UC can share stories, ask questions, find what treatments work, etc.

    Having UC is better than having Crohn's. Crohn's is inflammation anywhere in the digestive tract, so to be completely cured, I would have to remove my entire digestive tract, which isn't possible. UC is only inflammation in the colon, which if removed, you can still live.

    If you have any more specific questions I would be glad to answer them as best I could having Crohns and not UC.

    my daughter was having chronic diarrhea for over a year before they properly diagnosed her, which isn't uncommon I hear. For the longest time they just thought she was constipated from withholding (being too embarrassed to go anywhere but home, thus causing an blockage, which then results in parts of the blockage breaking off in the form of the runs). So they had her on constipation meds for a while, which seemed to work. For about a week. Then she started having diarrhea again. So then finally her pediatrician sent her to a specialist, and then more tests and more tests and more tests and they don't seem to stop. Luckily, I have 5 weeks vacation, 200 or so sick days/personal time, and 100% medical coverage at work. So any time I need time off to be with my daughter at appointments, I'm there. I feel that's extremely important.

    I actually thought it was the opposite, that crohn's was curable and UC wasn't? Maybe I'm just mixed up from all the information I've been reading.

    Thanks for the info and support.

    Paul
    Gimli 1993
    Fargo 2003
    Winnipeg 2005
    Winnipeg 2011
    St. Paul 2014
  • elvistheking44
    elvistheking44 Posts: 4,551
    Hugh Freaking Dillon wrote:
    FrankieG wrote:
    Sorry to hear the bad news but looking on the bright side, atleast she has been diagnosed. It took my Dr. more than 9 months to diagnose me (Crohns, in 2002 when I was 11), which really sucked because I was having some horrible pain back then. (I am 22 now)


    My first tip: Don't take any advice as perfect truth. Some things people swear-by will not work. Some things people swear won't work will work. She needs to try everything for a reasonable amount of time to determine if she likes it herself or not.

    Work carefully with her GI to fight the pain, which is something I wish I had done more back then. I just figured I had to live with it.. If you see a medication starting to stop working, change medication. Fight this thing aggressively.

    I have found that diets are more hassle than they are worth, imo. I have learned to avoid certain foods but dont follow a specific no gluten, SCD, etc.

    Sign her up on https://crohnology.com/ . This is an awesome facebook-like website that other people with Crohns and UC can share stories, ask questions, find what treatments work, etc.

    Having UC is better than having Crohn's. Crohn's is inflammation anywhere in the digestive tract, so to be completely cured, I would have to remove my entire digestive tract, which isn't possible. UC is only inflammation in the colon, which if removed, you can still live.

    If you have any more specific questions I would be glad to answer them as best I could having Crohns and not UC.

    my daughter was having chronic diarrhea for over a year before they properly diagnosed her, which isn't uncommon I hear. For the longest time they just thought she was constipated from withholding (being too embarrassed to go anywhere but home, thus causing an blockage, which then results in parts of the blockage breaking off in the form of the runs). So they had her on constipation meds for a while, which seemed to work. For about a week. Then she started having diarrhea again. So then finally her pediatrician sent her to a specialist, and then more tests and more tests and more tests and they don't seem to stop. Luckily, I have 5 weeks vacation, 200 or so sick days/personal time, and 100% medical coverage at work. So any time I need time off to be with my daughter at appointments, I'm there. I feel that's extremely important.

    I actually thought it was the opposite, that crohn's was curable and UC wasn't? Maybe I'm just mixed up from all the information I've been reading.

    Thanks for the info and support.

    Paul
    Please never forget that medicine is a big business. I pray for your daughter and what she is going through will end. Listen to her and how she feels.....
  • donnaruhl
    donnaruhl Posts: 2,157
    I'm crying right now,just thinking of how helpless you must feel. It pains me to hear or even see little Angel's being born to fight.I always told my kid's that God gives only the special people,Children with special needs.Because they have the strength,and patience,where as most people don't. My Daughter remembered what I said when she found out that her son was Autistic.It's been really difficult,but she's hanging in there.There's a lot of truth that goes along with,"It takes a Village" And your village surrounds you. :)
  • oceaninmyeyes
    oceaninmyeyes Posts: 4,646
    donnaruhl wrote:
    I'm crying right now,just thinking of how helpless you must feel. It pains me to hear or even see little Angel's being born to fight.I always told my kid's that God gives only the special people,Children with special needs.Because they have the strength,and patience,where as most people don't. My Daughter remembered what I said when she found out that her son was Autistic.It's been really difficult,but she's hanging in there.There's a lot of truth that goes along with,"It takes a Village" And your village surrounds you. :)
    :thumbup:
    And the sun it may be shining . . . but there's an ocean in my eyes

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