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
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 New York City
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 9/02/18 Fenway 1 9/04/2018 Fenway 2 9/18/21 Asbury Park 9/11/22 New York City 9/14/22 Camden
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.
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.
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".
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
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
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.....
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.
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
well, she finished her round of prednisone (steroids), and her colitis flared up again. we had an appointment with her GI doc and team again, they are all so nice and helpful. we are changing meds to immune-suppressors, which scares the hell out of us, but it's the next logical step in the fight. it increases her risk of infections and sickness, and cancer later on, but it's the only choice we have as of now. we won't know for a couple months if it's working or not, so we'll see. she's such a little fighter. she's so proud of having taken her new meds today without complaint, read her little sister a bed time story, and thanked us both for taking them to a pool/spray pad today.
she's just got such a pure heart of gold. sure, she can be a handful like any kid. But when she's not, she's so caring and so thoughtful and so loving, especially towards her little sister, who she calls her best friend. even before this disease.
just want to hug her and not stop. but then she yells "NO" and pushes me away.
Gimli 1993
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
she's just got such a pure heart of gold. sure, she can be a handful like any kid. But when she's not, she's so caring and so thoughtful and so loving, especially towards her little sister, who she calls her best friend. even before this disease.
just want to hug her and not stop. but then she yells "NO" and pushes me away.
Best wishes and positive thoughts to your family. *Hugs* to both your little girls from this Mummy in Australia. My little boys also reject my unsolicited hugs - I reckon it must feel great to be so rich in hugs that you can afford to reject a few
no. the general consensus seems to be that diet has nothing to do with it. when she's having a flare up, she tends to stay away from foods that are high in fibre (so surprise), but that's about it.
Gimli 1993
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
no. the general consensus seems to be that diet has nothing to do with it. when she's having a flare up, she tends to stay away from foods that are high in fibre (so surprise), but that's about it.
i'm sorry ... do not take offense but i refuse to believe diet is not a significant contributor ...
As a nearly 14 year patient with Crohn's, I hate to hear when little ones get diagnosed with IBD.
First thing, find a really good doctor. I've gone through 3 GIs since my initial diagnosis. I am at Vanderbilt in Nashville and they monitor my condition very closely.
Second thing, read as much as you can and become educated on this disease.
Pay attention to what foods cause problems. Have her take a multi-vitamin, calcium, B-12 (obviously consult a GI first)...drink lots of water.
It is an adjustment, but life can be pretty normal once you get things settled down.
If you have any questions, please feel free to send me a PM. After 2 surgeries and 5 colonscopies, I have some experience in this field.
I send my best to your daughter and your family.
Cheers,
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
no. the general consensus seems to be that diet has nothing to do with it. when she's having a flare up, she tends to stay away from foods that are high in fibre (so surprise), but that's about it.
i'm sorry ... do not take offense but i refuse to believe diet is not a significant contributor ...
believe whatever you want to believe. from your own link: According to the Crohn's and Colitis Foundation of America, diet is not a major factor in the inflammatory process
I have done the research, but maybe you are misunderstanding what I mean. there is no "one size fits all" diet cure. it's all completely individual. It's not like a diabetic who just has to watch their sugar intake. each and every case of UC gets affected by different foods.
this is all very new to her and us, so it will be a process to figure out exactly which foods are not helping the situation, but she's already been giving us information on which foods adversely affect her during a flare up.
food does not CAUSE a flare up. but certain foods can make a flare up worse. same with stress. it's not a flare up trigger, but it can make a flare up worse.
Gimli 1993
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
As a nearly 14 year patient with Crohn's, I hate to hear when little ones get diagnosed with IBD.
First thing, find a really good doctor. I've gone through 3 GIs since my initial diagnosis. I am at Vanderbilt in Nashville and they monitor my condition very closely.
Second thing, read as much as you can and become educated on this disease.
Pay attention to what foods cause problems. Have her take a multi-vitamin, calcium, B-12 (obviously consult a GI first)...drink lots of water.
It is an adjustment, but life can be pretty normal once you get things settled down.
If you have any questions, please feel free to send me a PM. After 2 surgeries and 5 colonscopies, I have some experience in this field.
I send my best to your daughter and your family.
Cheers,
PBM
thanks PBM. means a lot.
She is taking a multi vitamin, vitamin d drops, folic acid, and yes she is learning to deal with drinking LOTS of water (she was never a big drinker, but now she knows she has no choice). Haven't been told about B-12. I'll ask them about that next appt.
My sister has Crohn's, and my wife's sister's husband had UC, had the surgery and the reversal after about 20 years of excruciating pain. So he's all good now. My sister is managing her Crohn's well with a cocktail of about 6 pills a day.
my daughter's GI doc seems good so far. She seems to have a really good and supportive team all around, they are very nice and very explanatory and aggressive with the disease.
Gimli 1993
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
Obviously, it's a lot to take in at once. I was 22 when I was diagnosed and it really depressed me. That being said, I didn't know anyone with IBD and I felt isolated and alone with the condition.
There is so much more information and support out there now as opposed to a few years ago.
I realize she is 7, but keep an open dialog. It may feel overwhelming right now, but I assure you...things get much better. The first few months after diagnosis are difficult because you're experimenting with medicines and foods. Once you get it figured out, life will easier.
I've had to change up my lifestyle a little bit. This is just a hiccup...keep the faith and things will work out for you.
Be well.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
believe whatever you want to believe. from your own link: According to the Crohn's and Colitis Foundation of America, diet is not a major factor in the inflammatory process
I have done the research, but maybe you are misunderstanding what I mean. there is no "one size fits all" diet cure. it's all completely individual. It's not like a diabetic who just has to watch their sugar intake. each and every case of UC gets affected by different foods.
this is all very new to her and us, so it will be a process to figure out exactly which foods are not helping the situation, but she's already been giving us information on which foods adversely affect her during a flare up.
food does not CAUSE a flare up. but certain foods can make a flare up worse. same with stress. it's not a flare up trigger, but it can make a flare up worse.
yes ... diet is not the cause of UC but it is a major factor in dealing with it ...
Yet, as you may have already found out, both stress and certain foods can aggravate GI symptoms.
my response was to the fact that there wouldn't be a change in diet to manage the symptoms
Were you diagnosed with UC before they found out that it was Crohn's? curious.
THe Doctor that diagnosed me wasnt really that great, so it took a while to definitively say what I had, but im 90% sure he said "Crohns with a chance that it might be UC instead".
2003: 7/14 NJ ... 2006: 6/1 NJ, 6/3 NJ ... 2007: 8/5 IL ... 2008: 6/24 NY, 6/25 NY, 8/7 EV NJ ... 2009: 10/27 PA, 10/28 PA, 10/30 PA, 10/31 PA 2010: 5/20 NY, 5/21 NY ... 2011: 6/21 EV NY, 9/3 WI, 9/4 WI ... 2012: 9/2 PA, 9/22 GA ... 2013: 10/18 NY, 10/19 NY, 10/21 PA, 10/22 PA, 10/27 MD 2015: 9/23 NY, 9/26 NY ... 2016: 4/28 PA, 4/29 PA, 5/1 NY, 5/2 NY, 6/11 TN, 8/7 MA, 11/4 TOTD PA, 11/5 TOTD PA ... 2018: 8/10 WA ---- http://imgur.com/a/nk0s7
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
yeah, it usually takes awhile to diagnose, which is unfortunate..
The sick time is very important. Definitely support her, even when she grows up. I just had surgery this July, Im 22, and despite telling my mom that she doesn't need to stay in the hospital with me, she did anyway and that really made a difference.
You are mixing UC and Crohns. UC is only in the colon, so if the colon is removed you are 'cured'.
I have had 3 bowel resections and multiple tests and drugs/treatments, so if you have any specific questions, I might be able to answer them with my experiences.
Good luck!
2003: 7/14 NJ ... 2006: 6/1 NJ, 6/3 NJ ... 2007: 8/5 IL ... 2008: 6/24 NY, 6/25 NY, 8/7 EV NJ ... 2009: 10/27 PA, 10/28 PA, 10/30 PA, 10/31 PA 2010: 5/20 NY, 5/21 NY ... 2011: 6/21 EV NY, 9/3 WI, 9/4 WI ... 2012: 9/2 PA, 9/22 GA ... 2013: 10/18 NY, 10/19 NY, 10/21 PA, 10/22 PA, 10/27 MD 2015: 9/23 NY, 9/26 NY ... 2016: 4/28 PA, 4/29 PA, 5/1 NY, 5/2 NY, 6/11 TN, 8/7 MA, 11/4 TOTD PA, 11/5 TOTD PA ... 2018: 8/10 WA ---- http://imgur.com/a/nk0s7
well, she finished her round of prednisone (steroids), and her colitis flared up again. we had an appointment with her GI doc and team again, they are all so nice and helpful. we are changing meds to immune-suppressors, which scares the hell out of us, but it's the next logical step in the fight. it increases her risk of infections and sickness, and cancer later on, but it's the only choice we have as of now. we won't know for a couple months if it's working or not, so we'll see. she's such a little fighter. she's so proud of having taken her new meds today without complaint, read her little sister a bed time story, and thanked us both for taking them to a pool/spray pad today.
she's just got such a pure heart of gold. sure, she can be a handful like any kid. But when she's not, she's so caring and so thoughtful and so loving, especially towards her little sister, who she calls her best friend. even before this disease.
just want to hug her and not stop. but then she yells "NO" and pushes me away.
Which immune-suppressor is she going on? Im on 2 :x
Sounds like she is handleing it very well
2003: 7/14 NJ ... 2006: 6/1 NJ, 6/3 NJ ... 2007: 8/5 IL ... 2008: 6/24 NY, 6/25 NY, 8/7 EV NJ ... 2009: 10/27 PA, 10/28 PA, 10/30 PA, 10/31 PA 2010: 5/20 NY, 5/21 NY ... 2011: 6/21 EV NY, 9/3 WI, 9/4 WI ... 2012: 9/2 PA, 9/22 GA ... 2013: 10/18 NY, 10/19 NY, 10/21 PA, 10/22 PA, 10/27 MD 2015: 9/23 NY, 9/26 NY ... 2016: 4/28 PA, 4/29 PA, 5/1 NY, 5/2 NY, 6/11 TN, 8/7 MA, 11/4 TOTD PA, 11/5 TOTD PA ... 2018: 8/10 WA ---- http://imgur.com/a/nk0s7
I started on Pentasa back in 2000...switched to Immuran...then Remicade...now I am on Humira.
It is a shot you give yourself (it's like a pen needle) every other week. I have done really well with it.
Steroids are the worst...but sometimes they help with pain and discomfort...even in short fixes.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
I started on Pentasa back in 2000...switched to Immuran...then Remicade...now I am on Humira.
It is a shot you give yourself (it's like a pen needle) every other week. I have done really well with it.
Steroids are the worst...but sometimes they help with pain and discomfort...even in short fixes.
PBM
my daughter started on Pentasa. at the moment I don't recall the name of the immune suppressant she may go on. But I also read about the epi-pen like thing you are talking about. It sounds ideal. One shot every 2 weeks.
Gimli 1993
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
But I also read about the epi-pen like thing you are talking about. It sounds ideal. One shot every 2 weeks.
I was kinda nervous about it...I don't mind needles...I just don't like sticking myself with a needle. This is really great because it is a pen...you never see the needle. You put it on your belly...hit the trigger, wait 5-7 seconds and the medicine is injected.
I took Remicade for a few years...that entailed sitting with an IV for 4 1/2 hours every 2 months. This is much better for me...and it's working better as well.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
well her last round of steroids don't seem to be taking.......so she and my wife are currently in the emergency room waiting for a bed so they can shoot her full of steroids via IV (I'm at home with our youngest daughter). she'll be there for minimum 3 days. she's 7 years old. she was diagnosed 6 months ago. and they are already talking about biologics and surgery.
good god.
Gimli 1993
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
well her last round of steroids don't seem to be taking.......so she and my wife are currently in the emergency room waiting for a bed so they can shoot her full of steroids via IV (I'm at home with our youngest daughter). she'll be there for minimum 3 days. she's 7 years old. she was diagnosed 6 months ago. and they are already talking about biologics and surgery.
good god.
So sorry to hear this. My heart breaks for her and you and all who love her. Watching my own child struggle for so long was the hardest time of my life. I hope the doctors find the right combination of answers for her. Sending you positive thoughts, prayers and my hope for strength for you all.
Jen
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 New York City
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 9/02/18 Fenway 1 9/04/2018 Fenway 2 9/18/21 Asbury Park 9/11/22 New York City 9/14/22 Camden
Comments
what the fuck is all this shit going to do to her little body?
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
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 New York City
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
9/02/18 Fenway 1 9/04/2018 Fenway 2
9/18/21 Asbury Park
9/11/22 New York City
9/14/22 Camden
"Life Is What Happens To You When Your Busy Making Other Plans" John Lennon
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.
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
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
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
I will walk w/my face blood
I will walk w/my shadow flag
Memories back when she was smooth and strong
and waiting for the world to come along...
Eddie solo Vegas Oct 31,Nov 1 2012
she's just got such a pure heart of gold. sure, she can be a handful like any kid. But when she's not, she's so caring and so thoughtful and so loving, especially towards her little sister, who she calls her best friend. even before this disease.
just want to hug her and not stop. but then she yells "NO" and pushes me away.
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
Best wishes and positive thoughts to your family. *Hugs* to both your little girls from this Mummy in Australia. My little boys also reject my unsolicited hugs - I reckon it must feel great to be so rich in hugs that you can afford to reject a few
no. the general consensus seems to be that diet has nothing to do with it. when she's having a flare up, she tends to stay away from foods that are high in fibre (so surprise), but that's about it.
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
i'm sorry ... do not take offense but i refuse to believe diet is not a significant contributor ...
http://www.webmd.com/ibd-crohns-disease ... litis-plan
As a nearly 14 year patient with Crohn's, I hate to hear when little ones get diagnosed with IBD.
First thing, find a really good doctor. I've gone through 3 GIs since my initial diagnosis. I am at Vanderbilt in Nashville and they monitor my condition very closely.
Second thing, read as much as you can and become educated on this disease.
Pay attention to what foods cause problems. Have her take a multi-vitamin, calcium, B-12 (obviously consult a GI first)...drink lots of water.
It is an adjustment, but life can be pretty normal once you get things settled down.
If you have any questions, please feel free to send me a PM. After 2 surgeries and 5 colonscopies, I have some experience in this field.
I send my best to your daughter and your family.
Cheers,
PBM
Wishlist Foundation: http://wishlistfoundation.org
believe whatever you want to believe. from your own link: According to the Crohn's and Colitis Foundation of America, diet is not a major factor in the inflammatory process
I have done the research, but maybe you are misunderstanding what I mean. there is no "one size fits all" diet cure. it's all completely individual. It's not like a diabetic who just has to watch their sugar intake. each and every case of UC gets affected by different foods.
this is all very new to her and us, so it will be a process to figure out exactly which foods are not helping the situation, but she's already been giving us information on which foods adversely affect her during a flare up.
food does not CAUSE a flare up. but certain foods can make a flare up worse. same with stress. it's not a flare up trigger, but it can make a flare up worse.
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
thanks PBM. means a lot.
She is taking a multi vitamin, vitamin d drops, folic acid, and yes she is learning to deal with drinking LOTS of water (she was never a big drinker, but now she knows she has no choice). Haven't been told about B-12. I'll ask them about that next appt.
My sister has Crohn's, and my wife's sister's husband had UC, had the surgery and the reversal after about 20 years of excruciating pain. So he's all good now. My sister is managing her Crohn's well with a cocktail of about 6 pills a day.
my daughter's GI doc seems good so far. She seems to have a really good and supportive team all around, they are very nice and very explanatory and aggressive with the disease.
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
There is so much more information and support out there now as opposed to a few years ago.
I realize she is 7, but keep an open dialog. It may feel overwhelming right now, but I assure you...things get much better. The first few months after diagnosis are difficult because you're experimenting with medicines and foods. Once you get it figured out, life will easier.
I've had to change up my lifestyle a little bit. This is just a hiccup...keep the faith and things will work out for you.
Be well.
PBM
Wishlist Foundation: http://wishlistfoundation.org
yes ... diet is not the cause of UC but it is a major factor in dealing with it ...
Yet, as you may have already found out, both stress and certain foods can aggravate GI symptoms.
my response was to the fact that there wouldn't be a change in diet to manage the symptoms
THe Doctor that diagnosed me wasnt really that great, so it took a while to definitively say what I had, but im 90% sure he said "Crohns with a chance that it might be UC instead".
2010: 5/20 NY, 5/21 NY ... 2011: 6/21 EV NY, 9/3 WI, 9/4 WI ... 2012: 9/2 PA, 9/22 GA ... 2013: 10/18 NY, 10/19 NY, 10/21 PA, 10/22 PA, 10/27 MD
2015: 9/23 NY, 9/26 NY ... 2016: 4/28 PA, 4/29 PA, 5/1 NY, 5/2 NY, 6/11 TN, 8/7 MA, 11/4 TOTD PA, 11/5 TOTD PA ... 2018: 8/10 WA ---- http://imgur.com/a/nk0s7
yeah, it usually takes awhile to diagnose, which is unfortunate..
The sick time is very important. Definitely support her, even when she grows up. I just had surgery this July, Im 22, and despite telling my mom that she doesn't need to stay in the hospital with me, she did anyway and that really made a difference.
You are mixing UC and Crohns. UC is only in the colon, so if the colon is removed you are 'cured'.
I have had 3 bowel resections and multiple tests and drugs/treatments, so if you have any specific questions, I might be able to answer them with my experiences.
Good luck!
2010: 5/20 NY, 5/21 NY ... 2011: 6/21 EV NY, 9/3 WI, 9/4 WI ... 2012: 9/2 PA, 9/22 GA ... 2013: 10/18 NY, 10/19 NY, 10/21 PA, 10/22 PA, 10/27 MD
2015: 9/23 NY, 9/26 NY ... 2016: 4/28 PA, 4/29 PA, 5/1 NY, 5/2 NY, 6/11 TN, 8/7 MA, 11/4 TOTD PA, 11/5 TOTD PA ... 2018: 8/10 WA ---- http://imgur.com/a/nk0s7
Which immune-suppressor is she going on? Im on 2 :x
Sounds like she is handleing it very well
2010: 5/20 NY, 5/21 NY ... 2011: 6/21 EV NY, 9/3 WI, 9/4 WI ... 2012: 9/2 PA, 9/22 GA ... 2013: 10/18 NY, 10/19 NY, 10/21 PA, 10/22 PA, 10/27 MD
2015: 9/23 NY, 9/26 NY ... 2016: 4/28 PA, 4/29 PA, 5/1 NY, 5/2 NY, 6/11 TN, 8/7 MA, 11/4 TOTD PA, 11/5 TOTD PA ... 2018: 8/10 WA ---- http://imgur.com/a/nk0s7
yeah, in the beginning, I mixed them up. I got it straight pretty quick with all the reading.
Thanks Frankie.
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
It is a shot you give yourself (it's like a pen needle) every other week. I have done really well with it.
Steroids are the worst...but sometimes they help with pain and discomfort...even in short fixes.
PBM
Wishlist Foundation: http://wishlistfoundation.org
my daughter started on Pentasa. at the moment I don't recall the name of the immune suppressant she may go on. But I also read about the epi-pen like thing you are talking about. It sounds ideal. One shot every 2 weeks.
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
I was kinda nervous about it...I don't mind needles...I just don't like sticking myself with a needle. This is really great because it is a pen...you never see the needle. You put it on your belly...hit the trigger, wait 5-7 seconds and the medicine is injected.
I took Remicade for a few years...that entailed sitting with an IV for 4 1/2 hours every 2 months. This is much better for me...and it's working better as well.
PBM
Wishlist Foundation: http://wishlistfoundation.org
good god.
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
So sorry to hear this. My heart breaks for her and you and all who love her. Watching my own child struggle for so long was the hardest time of my life. I hope the doctors find the right combination of answers for her. Sending you positive thoughts, prayers and my hope for strength for you all.
Jen
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