My daughter was diagnosed more that 10 yrs ago at 15. She is now a professional who got through college along with grad school. Had many hard times getting through the years. She has had Rhemicade in High School, Humira for a few years till she dealt with 2 bouts of HPV, shingles and hairloss. She is now on Accecol was taking 10 per day but now is up to 16 after a flareup, she is also on steroids. This flareup came after a stressful 2 wks with her dog who was seriously ill. Being a mom I am always trying to help her realize she has go constantly search for more answers on how to cope and live with this disease. I don't want to say she has been fortunate but all the years she has dealt only with the terrible pain and very little diarhea until this last time which the diarhea lasted 2 weeks. We don't know if this is a new pattern the disease is taking. I want her to look into diet even though the doc says it does not matter I don't agree. I have heard of a raw food diet helping and would like to know if anyone has had any experience with it.
My daughter's Crohn's story
- Thread starter COOK620
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DustyKat
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Hi COOK and :welcome:
Seems like most docs say diet doesn't make a difference but I reckon if you asked the peeps around here they would say emphatically it does! Everyone is different but most would find that it either helps to maintain things if you are in remission or helps to settle things when you are flaring. Unfortunately some reach a point where just about everything that passes their lips causes issues. There will be others along to give their own experiences.
Has she another appointment with the GI now that her symptoms have changed?
Have a browse through the Food and Diet Forum.........
http://www.crohnsforum.com/forumdisplay.php?f=17
and for books in this forum...................
http://www.crohnsforum.com/forumdisplay.php?f=29
I hope your daughter can find the right combinations for her and things start to settle down. Good luck and welcome aboard!
Take care,
Dusty
Seems like most docs say diet doesn't make a difference but I reckon if you asked the peeps around here they would say emphatically it does! Everyone is different but most would find that it either helps to maintain things if you are in remission or helps to settle things when you are flaring. Unfortunately some reach a point where just about everything that passes their lips causes issues. There will be others along to give their own experiences.
Has she another appointment with the GI now that her symptoms have changed?
Have a browse through the Food and Diet Forum.........
http://www.crohnsforum.com/forumdisplay.php?f=17
and for books in this forum...................
http://www.crohnsforum.com/forumdisplay.php?f=29
I hope your daughter can find the right combinations for her and things start to settle down. Good luck and welcome aboard!
Take care,
Dusty
Cat-a-Tonic
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- 12,645
Hi Cook and welcome to the forum. I've heard different things about diet - some say that foods do not cause inflammation at all, but that foods can cause symptoms that seem like inflammation, such as diarrhea and pain. And others say that food can cause inflammation and flares, especially things like refined sugar. Either way, trigger foods are no fun and can cause a lot of misery! Just because of this, I feel that diet is important with this illness - we all like to be as symptom-free as possible. As Dusty said, take a look through the Food & Diet forum, there'll be tons of information for you to read through on there. And I must say, your daughter is very lucky to have a parent like you. (That goes for you too, Dusty! )
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Hey Cook
Ditto what Cat said, you daughter's are very lucky to have you both. I wouldn't exactly call it fortunate to deal with daily pain and bout of D. You daughter is an amazing woman to work her way through school and deal with CD on top of it. I can't imagine the stress she felt, trying to maintain good marks at school and dealing with the sx of CD. When was the lasts time she had a colonoscopy/endoscopy. Maybe it's time to get a good look at what's going on in there so that her meds can be tweaked appropriately.
Definitely take a look at the thread about diet and nutrition. Doctor's claim food has no impact on the disease, but they have yet to really discover what causes Crohn's in the first place. Diet definitely has an impact on each of us. Finding the right foods is based on what one can/cannot tolerate at that particular time. For instance, right now, I'm in a pretty bad flare and I also have a portion of my bowel that is quite narrowed because of scar tissue. I find that eating mainly a liquid diet is helping give the bowels a rest and helps keep my sx under more control.
Glad you found this forum. You'll find a ton of useful info. The folks here a great, maybe your daughter can come sometime, I know it brought me great relief just knowing that there are others out there who experience many of the things I have been dealing with the past 20 years.
Ditto what Cat said, you daughter's are very lucky to have you both. I wouldn't exactly call it fortunate to deal with daily pain and bout of D. You daughter is an amazing woman to work her way through school and deal with CD on top of it. I can't imagine the stress she felt, trying to maintain good marks at school and dealing with the sx of CD. When was the lasts time she had a colonoscopy/endoscopy. Maybe it's time to get a good look at what's going on in there so that her meds can be tweaked appropriately.
Definitely take a look at the thread about diet and nutrition. Doctor's claim food has no impact on the disease, but they have yet to really discover what causes Crohn's in the first place. Diet definitely has an impact on each of us. Finding the right foods is based on what one can/cannot tolerate at that particular time. For instance, right now, I'm in a pretty bad flare and I also have a portion of my bowel that is quite narrowed because of scar tissue. I find that eating mainly a liquid diet is helping give the bowels a rest and helps keep my sx under more control.
Glad you found this forum. You'll find a ton of useful info. The folks here a great, maybe your daughter can come sometime, I know it brought me great relief just knowing that there are others out there who experience many of the things I have been dealing with the past 20 years.
Hi Cook, welcome!! I agree with you!! I'll never believe that diet isn't important for a chronie!! It's important for everyone!! I try to insure that EJ eats only healthy foods but we no longer try to follow a specific diet. He's an 11 yr old boy so he needs to grow and add weight. A lot of the diet advice we received just doesn't provide the protein and fats a growing child needs. At least in my uneducated opinion . Good luck!!
. Good luck!!Thanks to all of you who wrote to cook
Gosh this is my first day joining and i have a good feeling this is going to be good for us. Thank you all, your stories show such courage.
My daughter has an appt with her dr next week. Her symptoms are better but not great. She is having a hard time taking all the pills, she does not take any vitamins bc she is sick of pills. I am trying to explain that these meds deplete the body of so much and at least taking vit helps.
Sometimes when kids grow up with this disease they want to ignore it if the symptoms get better and then that attitude keeps them from doing anything about it. That is where my stress comes from. I know i am not in control and i have such a hard time watching from the sidelines.
Gosh this is my first day joining and i have a good feeling this is going to be good for us. Thank you all, your stories show such courage.
My daughter has an appt with her dr next week. Her symptoms are better but not great. She is having a hard time taking all the pills, she does not take any vitamins bc she is sick of pills. I am trying to explain that these meds deplete the body of so much and at least taking vit helps.
Sometimes when kids grow up with this disease they want to ignore it if the symptoms get better and then that attitude keeps them from doing anything about it. That is where my stress comes from. I know i am not in control and i have such a hard time watching from the sidelines.
DustyKat
Super Moderator
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I know what you mean about the whole sidelines thing! My daughter is remission and has moved away from home this year to go to university. I have stepped back but it is such a fine line between advice and nagging and keeping the lines of communication open. I know there are many things she could be making wiser decisions about but an 18 year old in remission is no different to an 18 year old without Crohns, they are invincible!
:hang: Mum, we'll get there! Secretly keeping my fingers and toes crossed.
@ Cat ~ awww thanks...........:blush:
Take care,
Dusty
:hang: Mum, we'll get there! Secretly keeping my fingers and toes crossed.
@ Cat ~ awww thanks...........:blush:
Take care,
Dusty
Astra
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- 5,870
Hi Cook
and welcome
My gastro once told me that no diet will stop inflammation when it strikes, won't prevent it neither, but will reduce symptoms that come with it, such as diarrhea and constipation, or gas and bloat, abdo pains etc.
When I feel crappy with pains and diarrhea, i resort back to the low residue diet, it works for me, reduces pains and D, and gives my bowels a little rest. You can find it in the diet section here. I have no experience of the raw food diet.
Your daughter sounds like a strong determined young woman! She has come so far!
Glad you found us, lots of friends here for you, try not to stress too much, any questions, just fire away!
lotsa luv
Joan xxx
and welcome
My gastro once told me that no diet will stop inflammation when it strikes, won't prevent it neither, but will reduce symptoms that come with it, such as diarrhea and constipation, or gas and bloat, abdo pains etc.
When I feel crappy with pains and diarrhea, i resort back to the low residue diet, it works for me, reduces pains and D, and gives my bowels a little rest. You can find it in the diet section here. I have no experience of the raw food diet.
Your daughter sounds like a strong determined young woman! She has come so far!
Glad you found us, lots of friends here for you, try not to stress too much, any questions, just fire away!
lotsa luv
Joan xxx
Thanks again all of you who wrote back, I was at my daughters condo over the weekend and she look wiped out but is battling a cold. I made up my mind I was not going to bring up the Crohn's talk at all. I think maybe if I go long enough without giving advise them she will start to give it to herself instead. We will see.
To DustyKat
I remember when my daughter went away to college at 18 she was so sick that first year while living in the dorm. Being on Rhemicade gave her a disadvantage in fighting off all the germs that fester in those dorms. Plus the lifestyle and eating habits and those sleepless nights. She was 3 hrs away and several time I left out house at the early morning hour to get her to a hotel for a weekend to get better, sometimes we would have to visit the emergency room at the hos first. Be strong because they only call when it is bad it seems. But Crohnies have a lot of strength and determination so it gets them through alot.
To DustyKat
I remember when my daughter went away to college at 18 she was so sick that first year while living in the dorm. Being on Rhemicade gave her a disadvantage in fighting off all the germs that fester in those dorms. Plus the lifestyle and eating habits and those sleepless nights. She was 3 hrs away and several time I left out house at the early morning hour to get her to a hotel for a weekend to get better, sometimes we would have to visit the emergency room at the hos first. Be strong because they only call when it is bad it seems. But Crohnies have a lot of strength and determination so it gets them through alot.
