crohn's questions

[Ann.without.an.e]

I am not a regular here, but I would love to glean from any knowledge you ladies might have. After a lot of sickness, labs, an endoscopy and colonoscopy, it looks like DS11 has Crohn's Disease. His Dr. sent us home with a ton of pamphlets. We were asked to read those and come to our follow up appointment with any questions we may have. We will know more at this appt as he will also have lab results and labwork to review in addition to the initial camera views at the hospital. We were looking for a true diag. for celiacs (which this specialist thinks he might have also?). I really wasn't anticipating Crohn's but I guess it does make sense now that I think of it.

I know that the paperwork says that diet does not play a key role ~ honestly, I don't buy that for a second.

Have you faced this with yourself or a family member? If so, what are your favorite resources? Links to books, blogs, websites, etc ... anything is appreciated as I try to sort this out.

Thanks again

UPDATES TO POST #45

Because several people come back to me asking about this post, I have tried to keep Post #45 updated with where ds is without meds.

[Jenn in FL]

:grouphug::grouphug::grouphug:

 

You will receive LOTS of helpful links from this board!

 

Check out:

 

http://www.ccfa.org

 

http://www.healingwell.com Click on the Forums & Chat tab and then scroll down to Crohn's forum, also the Ulcerative Colitis forum may be helpful

 

Despite the current medical school of thought, I agree with you...diet DOES come into play for many people.

 

HTH,

Jen

Edited November 12, 2012 by Jenn in FL
More info

[Ann.without.an.e]

:grouphug::grouphug::grouphug:

 

You will receive LOTS of helpful links from this board!

 

Check out:

 

http://www.ccfa.org

 

http://www.healingwell.com Click on the Forums & Chat tab and then scroll down to Crohn's forum, also the Ulcerative Colitis forum may be helpful

 

Despite the current medical school of thought, I agree with you...diet DOES come into play for many people.

 

HTH,

Jen

 

Thanks Jen:)

[elfgivas]

i'm glad you don't buy that diet has no link. it may not cause it, it may not trigger it, but in our experience it sure does impact how you live with it.

 

this study was key for us.

http://www.ualberta.ca/~loewen/Medicine/GIM%20Residents%20Core%20Reading/Probiotics.pdf

 

helpful thing #1: VSL #3 (a probiotic) has made a significant difference for us and for a friend with crohn's.

 

i also did diet trials with a hospital in kingston, ontario. apparently i was a good subject because i trigger so easily. we learned all sorts of things, including that for me food combinations matter. and my diet when i'm not flaring and when i am can be radically different.

 

eg. corn on the cob, corn kernels, etc. are simply evil. i have about 7 hours from when i eat it until agony. but popcorn is fine, and ground corn in things like cheesies is actually good.

 

helpful thing #2, but only for some, and only with lots of caution: psyllium in capsule form. 2 capsules once a day at about 4pm for maintenance, more at the slightest twinge. ask your doctor. it can be NOT good for some patients, so it really is important to check. and if there is ever a full blockage, then its truly dreadful....

 

helpful thing #3: if your son and you are willling, being part of trials helped me feel like i was in control, and could be part of finding a solution, but it also helped me get to know my gut really, really well, which has made all the difference.

 

helpful thing #4: exercise. lots. frequently. i have a friend with crohns who is now in his late 40s who is completely symptom free as long as he rides his bike for 6 hours a day. so he rides to work, he rides home, he rides on the weekends.... and for holidays his family goes on biking trips, where he is the healthiest he ever is.

 

helpful thing #5: balanced days, not balanced meals. food combinations matter.

 

so i'd encourage you to start a list of questions, and read a lot. it will be an ongoing learning, and this is just the beginning.

 

good luck!

ann

[Ann.without.an.e]

Thank you. Can I ask a silly question? I keep hearing about probiotics, but I think lactose might be a trigger for DS. Is this a problem?

 

 

 

i'm glad you don't buy that diet has no link. it may not cause it, it may not trigger it, but in our experience it sure does impact how you live with it.

 

this study was key for us.

http://www.ualberta.ca/~loewen/Medicine/GIM%20Residents%20Core%20Reading/Probiotics.pdf

 

helpful thing #1: VSL #3 (a probiotic) has made a significant difference for us and for a friend with crohn's.

 

i also did diet trials with a hospital in kingston, ontario. apparently i was a good subject because i trigger so easily. we learned all sorts of things, including that for me food combinations matter. and my diet when i'm not flaring and when i am can be radically different.

 

eg. corn on the cob, corn kernels, etc. are simply evil. i have about 7 hours from when i eat it until agony. but popcorn is fine, and ground corn in things like cheesies is actually good.

 

helpful thing #2, but only for some, and only with lots of caution: psyllium in capsule form. 2 capsules once a day at about 4pm for maintenance, more at the slightest twinge. ask your doctor. it can be NOT good for some patients, so it really is important to check. and if there is ever a full blockage, then its truly dreadful....

 

helpful thing #3: if your son and you are willling, being part of trials helped me feel like i was in control, and could be part of finding a solution, but it also helped me get to know my gut really, really well, which has made all the difference.

 

helpful thing #4: exercise. lots. frequently. i have a friend with crohns who is now in his late 40s who is completely symptom free as long as he rides his bike for 6 hours a day. so he rides to work, he rides home, he rides on the weekends.... and for holidays his family goes on biking trips, where he is the healthiest he ever is.

 

helpful thing #5: balanced days, not balanced meals. food combinations matter.

 

so i'd encourage you to start a list of questions, and read a lot. it will be an ongoing learning, and this is just the beginning.

 

good luck!

ann

[speedmom4]

:grouphug:

 

May I ask what symptoms your ds was/is having? My ds has had recurring stomach ulcers and recurring lower abdominal pain. Our ped GI just keeps telling me that ds is a high acid producer. Ds did have a colonoscopy years ago and they biopsied it. His colon was fine. The upper endoscopy showed several large ulcers and his esophagus showed chronic inflammation. This summer ds was also experiencing weight loss and fevers. Ds is very small for his age and his weight loss was very concerning. The tests only showed stomach ulcers. The GI decided not to do a colonoscopy but did do a lot of blood work that came back normal.

 

Anyway, Crohns has always been at the back of my mind. I hope it never becomes true but nothing makes sense about my ds's digestive tract.

 

Good luck!

 

Elise in NC

[Ann.without.an.e]

:grouphug:

 

May I ask what symptoms your ds was/is having? My ds has had recurring stomach ulcers and recurring lower abdominal pain. Our ped GI just keeps telling me that ds is a high acid producer. Ds did have a colonoscopy years ago and they biopsied it. His colon was fine. The upper endoscopy showed several large ulcers and his esophagus showed chronic inflammation. This summer ds was also experiencing weight loss and fevers. Ds is very small for his age and his weight loss was very concerning. The tests only showed stomach ulcers. The GI decided not to do a colonoscopy but did do a lot of blood work that came back normal.

 

Anyway, Crohns has always been at the back of my mind. I hope it never becomes true but nothing makes sense about my ds's digestive tract.

 

Good luck!

 

Elise in NC

 

 

 

DS lost over 12% of his body weight and he was on the smaller size to start with (not really any weight to lose). He has had chronic diarrhea since February. In July, he had the basic stool tests performed and everything was fine. He also had labs drawn. His SED Rates and some other inflammatory markers were elevated. He has had joint pain for years. The endoscopy looked really good. He doesn't appear to have acid problems. His colon was very inflamed and agitated. With the length of time this has been going on, and some other considerations, the doctor is almost certain it is Crohn's. We are waiting to look over the biopsies with him at our follow up appointment later this week. We tried a trial of gluten and dairy free and it helped tremendously, making us think more celiacs disease. He had to go back on a gluten diet for a few weeks before his biopsies, but now we have him back on a gluten and dairy free diet. We are feeling our way along with no real answers at this point. I am sorry for the struggles you are having with your young one. I hope you find something that helps him soon. It is difficult to watch your child feel so unwell and seem to have little control over it.

[LifeLovePassion]

I have had this lovely disease since I was 3. And it frusterates me to no end that I have been told all along that diet doesn't make a difference. I can tell you, it does. Get the book Breaking the Vicious Cycle. Excellent material, but the suggestions are hard to follow. But the closer I follow them the better things are. There are also yahoo groups regarding the book as well.

[Mom-ninja.]

My GI told me that celiac patients are at higher risk for Crohn's. He may have both. I was checked for both. My blood test showed a "slight positive" for Crohn's but during my endo and colonoscopy my doctor said he didn't see any active signs of it. He said that didn't rule it though.

 

I hope you get answers soon. It's all very frustrating.

 

Has he had his thyroid checked as well? Make sure they do that blood work too.

[Ann.without.an.e]

Thank you, Rachel.

 

 

 

 

I have had this lovely disease since I was 3. And it frusterates me to no end that I have been told all along that diet doesn't make a difference. I can tell you, it does. Get the book Breaking the Vicious Cycle. Excellent material, but the suggestions are hard to follow. But the closer I follow them the better things are. There are also yahoo groups regarding the book as well.

[Ann.without.an.e]

Yes, his doctor mentioned that he could have both and that it isn't uncommon. He biopsied for Celiacs and we should learn the results at our appt this week. They say that his thyroid was tested. I have an auto immune thyroid issue so I asked for that. Thanks for the thoughts.

 

 

My GI told me that celiac patients are at higher risk for Crohn's. He may have both. I was checked for both. My blood test showed a "slight positive" for Crohn's but during my endo and colonoscopy my doctor said he didn't see any active signs of it. He said that didn't rule it though.

 

I hope you get answers soon. It's all very frustrating.

 

Has he had his thyroid checked as well? Make sure they do that blood work too.

[SweetPea]

My ds was diagnosed with Crohn's this past July. He's feeling much better and yes we've changed diet. We are following the SCD (specific carbohydrate diet) and he looks and feels great.

 

I recommend Breaking the Vicious Cycle by Elaine Gottschall. Websites for recipes and tips: http://scdrecipe.com/home/ http://pecanbread.com/ http://www.nomorecrohns.com/

 

My ds can't handle lactose and most with Crohn's can't. Hard cheeses are acceptable and so is SCD homemade yogurt.

 

I bake with almond flour (buy in bulk at whole foods) and freeze. I have a system that allows me to now bake 1 day for every 3 weeks.

 

PM me if you have any more questions or would like some recipes! I have done lots of research and would love to share if you'd like :D

[Mandylubug]

:grouphug::grouphug: Many hugs. Crohn's is a disease that isn't well known and many take light of its nature. My brother has suffered from Crohn's his entire life.

 

While diet may not cause crohn's; it definitely has an influence in his day to day life. Some foods are triggers for inflammation, etc. and have to be cut from his diet.

 

Also, he has issues with lack of iron absorbtion, calcium absorbtion, etc. due to the parts of his intestines that have been removed due to cronic inflammation and disease through the years. This in return has caused him to have brittle bones and weakened enamel. He has broken the same rib this year alone atleast five times just from coughing. His higher level of steroids have caused him to have diabetes. It has been quite the struggle for him.

 

He is 40 and now fully disabled due to his crohn's disease. I do know that when he was younger he was in remission more than he wasn't and his quality of life was good.

 

I am not stating all of this to scare you but to inform that there are many side effects to crohn's disease and the medications themselves bring their own baggage of side effects as well. Medications are a necessity as well as a strict diet.

[Ann.without.an.e]

I think it is good to hear from different experiences, both good and bad. Thank you for sharing.

 

I am curious, why is medication necessary? I came home with a hand full of prescriptions that I am hoping to avoid. I have general mistrust for medications and I believe they often cause more harm than good. I would love to know your thoughts on this.

 

 

:grouphug::grouphug: Many hugs. Crohn's is a disease that isn't well known and many take light of its nature. My brother has suffered from Crohn's his entire life.

 

While diet may not cause crohn's; it definitely has an influence in his day to day life. Some foods are triggers for inflammation, etc. and have to be cut from his diet.

 

Also, he has issues with lack of iron absorbtion, calcium absorbtion, etc. due to the parts of his intestines that have been removed due to cronic inflammation and disease through the years. This in return has caused him to have brittle bones and weakened enamel. He has broken the same rib this year alone atleast five times just from coughing. His higher level of steroids have caused him to have diabetes. It has been quite the struggle for him.

 

He is 40 and now fully disabled due to his crohn's disease. I do know that when he was younger he was in remission more than he wasn't and his quality of life was good.

 

I am not stating all of this to scare you but to inform that there are many side effects to crohn's disease and the medications themselves bring their own baggage of side effects as well. Medications are a necessity as well as a strict diet.

[Ann.without.an.e]

I think I will pm you. Thanks for sharing.

 

 

 

My ds was diagnosed with Crohn's this past July. He's feeling much better and yes we've changed diet. We are following the SCD (specific carbohydrate diet) and he looks and feels great.

 

I recommend Breaking the Vicious Cycle by Elaine Gottschall. Websites for recipes and tips: http://scdrecipe.com/home/ http://pecanbread.com/ http://www.nomorecrohns.com/

 

My ds can't handle lactose and most with Crohn's can't. Hard cheeses are acceptable and so is SCD homemade yogurt.

 

I bake with almond flour (buy in bulk at whole foods) and freeze. I have a system that allows me to now bake 1 day for every 3 weeks.

 

PM me if you have any more questions or would like some recipes! I have done lots of research and would love to share if you'd like :D

[Mandylubug]

I think it is good to hear from different experiences, both good and bad. Thank you for sharing.

 

I am curious, why is medication necessary? I came home with a hand full of prescriptions that I am hoping to avoid. I have general mistrust for medications and I believe they often cause more harm than good. I would love to know your thoughts on this.

 

my brother has to do iron infusions, and an infusion for inflammation. When his flare ups are truly horrible he is on steroids such as prednisone. I do know he has had a HORRIBLE time with insurance approving IV infusion medications that are easier on his body than the steroids, etc... When he isn't in a horrible flare up situation he just does his iron infusions and remicade infusion.

 

I know the remicade helps him stay in remission of inflammation (although, it has been years since his last remission at this point)

[LifeLovePassion]

My ds was diagnosed with Crohn's this past July. He's feeling much better and yes we've changed diet. We are following the SCD (specific carbohydrate diet) and he looks and feels great.

 

I recommend Breaking the Vicious Cycle by Elaine Gottschall. Websites for recipes and tips: http://scdrecipe.com/home/ http://pecanbread.com/ http://www.nomorecrohns.com/

 

My ds can't handle lactose and most with Crohn's can't. Hard cheeses are acceptable and so is SCD homemade yogurt.

 

I bake with almond flour (buy in bulk at whole foods) and freeze. I have a system that allows me to now bake 1 day for every 3 weeks.

 

PM me if you have any more questions or would like some recipes! I have done lots of research and would love to share if you'd like :D

 

I'd love to know your almond flour recipies. I have a hard time finding ones I like. I order in bulk from honeyville, they have coupons about once a month.

[BoyOBoy]

I'm so sorry your son is sick. My mom has Crohn's and had a terrible time of it for years. She found some foods triggered symptoms. She has a short list of foods at any given time that 'feel good.' These foods don't seem to be the same for all people, all the time. My uncle has had great success with careful diet, though I'm not sure what he uses. He is totally off medication. My husband has mild Crohns. Other than not over eating, food hasn't had a huge impact. He was just consistently feeling ill and in the bathroom. He got on Asacol and has been without a major flare up for over a year. I also don't love the idea of a kid being on medications. One thing to remember, though, is that the medications do more than just relieve symptoms, they minimize damage. Your son may seem to be doing ok off meds, but inflammation, bleeding, etc could be progressing. My FIL learned this the hard way and almost died from a small infection that went septic.

[AmyontheFarm]

Crohns and Ulcerative Colitis here. I found that if I use cumin in my ground beef recipes, I feel better the next day. Also, I can never drink Earl Grey Tea, I'd rather swallow knives. Other teas are generally ok, but never the Grey.

 

There are lots of ladies on this board who can help you, feel free to ask questions any time!:001_smile:

[Susan in TN]

I haven't read the other posts, but please please please don't listen to the doctors who tell you that diet plays little to no role. A good book to read is called "Breaking the Vicious Cycle" by Elaine Gottschall...I'm fairly certain my sister, who "lived" with crohns for 15 years, would not be alive today had she not found help through this book/diet. She followed everything the specialists recommended and took her medication, but continued to get worse. Following the advice in this book allowed her system to heal and she hasn't had any issues in years and no longer has to take any medication. There are many similar diets and books as well, so read up as much as possible.

 

Also check breakingtheviciouscycle.info

[SweetPea]

I'd love to know your almond flour recipies. I have a hard time finding ones I like. I order in bulk from honeyville, they have coupons about once a month.

 

 

What are you looking for? Bread, muffins, cookies, crackers?

[Ann.without.an.e]

Crohns and Ulcerative Colitis here. I found that if I use cumin in my ground beef recipes, I feel better the next day. Also, I can never drink Earl Grey Tea, I'd rather swallow knives. Other teas are generally ok, but never the Grey.

 

There are lots of ladies on this board who can help you, feel free to ask questions any time!:001_smile:

 

Have you ever taken it as a supplement? Just curious :001_smile:

[Ann.without.an.e]

This is good to know. Thank you. I gave him one round of the steroids and he felt awful. What are the other options out there? Anyone know?

 

 

I'm so sorry your son is sick. My mom has Crohn's and had a terrible time of it for years. She found some foods triggered symptoms. She has a short list of foods at any given time that 'feel good.' These foods don't seem to be the same for all people, all the time. My uncle has had great success with careful diet, though I'm not sure what he uses. He is totally off medication. My husband has mild Crohns. Other than not over eating, food hasn't had a huge impact. He was just consistently feeling ill and in the bathroom. He got on Asacol and has been without a major flare up for over a year. I also don't love the idea of a kid being on medications. One thing to remember, though, is that the medications do more than just relieve symptoms, they minimize damage. Your son may seem to be doing ok off meds, but inflammation, bleeding, etc could be progressing. My FIL learned this the hard way and almost died from a small infection that went septic.

[Ann.without.an.e]

Thank you. A few people have mentioned that book, so I should definitely order it. You hear it once...coincidence. If you continue to hear then you should definitely not ignore it :001_smile:

 

 

I haven't read the other posts, but please please please don't listen to the doctors who tell you that diet plays little to no role. A good book to read is called "Breaking the Vicious Cycle" by Elaine Gottschall...I'm fairly certain my sister, who "lived" with crohns for 15 years, would not be alive today had she not found help through this book/diet. She followed everything the specialists recommended and took her medication, but continued to get worse. Following the advice in this book allowed her system to heal and she hasn't had any issues in years and no longer has to take any medication. There are many similar diets and books as well, so read up as much as possible.

 

Also check breakingtheviciouscycle.info

[Mandylubug]

This is good to know. Thank you. I gave him one round of the steroids and he felt awful. What are the other options out there? Anyone know?

 

I would seek out a specialist with an active working knowledge of crohn's. They would know all the options out there. Hope he gets to feeling better soon!

[Ann.without.an.e]

I would seek out a specialist with an active working knowledge of crohn's. They would know all the options out there. Hope he gets to feeling better soon!

 

We are seeing a Pediatric G.I. and he seems to have a lot of understanding. I will ask him at our appt. Thanks :001_smile:

[DawnM]

SIX HOURS????

 

Any disease that required me to work out 6 HOURS per day would be one I would have to suffer.

 

No way I would even have the time to do that.

 

Dawn

 

helpful thing #4: exercise. lots. frequently. i have a friend with crohns who is now in his late 40s who is completely symptom free as long as he rides his bike for 6 hours a day. so he rides to work, he rides home, he rides on the weekends.... and for holidays his family goes on biking trips, where he is the healthiest he ever is.

 

helpful thing #5: balanced days, not balanced meals. food combinations matter.

 

so i'd encourage you to start a list of questions, and read a lot. it will be an ongoing learning, and this is just the beginning.

 

good luck!

ann

[LifeLovePassion]

What are you looking for? Bread, muffins, cookies, crackers?

 

Yes!:lol:

(When you have time)

[speedmom4]

DS lost over 12% of his body weight and he was on the smaller size to start with (not really any weight to lose). He has had chronic diarrhea since February. In July, he had the basic stool tests performed and everything was fine. He also had labs drawn. His SED Rates and some other inflammatory markers were elevated. He has had joint pain for years. The endoscopy looked really good. He doesn't appear to have acid problems. His colon was very inflamed and agitated. With the length of time this has been going on, and some other considerations, the doctor is almost certain it is Crohn's. We are waiting to look over the biopsies with him at our follow up appointment later this week. We tried a trial of gluten and dairy free and it helped tremendously, making us think more celiacs disease. He had to go back on a gluten diet for a few weeks before his biopsies, but now we have him back on a gluten and dairy free diet. We are feeling our way along with no real answers at this point. I am sorry for the struggles you are having with your young one. I hope you find something that helps him soon. It is difficult to watch your child feel so unwell and seem to have little control over it.

 

Your poor ds! Thank you for sharing your experience. I hope that you all get definitive answers soon. There is a wonderful message board for people with children with IBD (Crohn's, Colitis, etc). I found a lot of good information there. Here is the link: http://www.crohnsforum.com/forumdisplay.php?f=49

 

God Bless,

Elise in NC

[Guest dharper]

Lactose isn't always linked to Crohn's - it depends on what part of the digestive system is affected. If it is the lower intestine, there is a good chance Lactose Intolerance will be exacerbated with the disease. Lactose intolerance can be doubly bad with Crohn's, but it can also be overblown. http://evidencebasedibd.blogspot.com/ has a post on lactose in food, and http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=lifestyle-and-home-remedies has some great general diet tips.

[Ann.without.an.e]

Lactose isn't always linked to Crohn's - it depends on what part of the digestive system is affected. If it is the lower intestine, there is a good chance Lactose Intolerance will be exacerbated with the disease. Lactose intolerance can be doubly bad with Crohn's, but it can also be overblown. http://evidencebasedibd.blogspot.com/ has a post on lactose in food, and http://www.mayoclini...d-home-remedies has some great general diet tips.

 

 

We got all of our results back and DS now produces zero lactase. Therefore he is absolutely lactose intolerant. Not everyone with Crohn's has this problem though.

[Ann.without.an.e]

double post, sorry

[Ann.without.an.e]

UPDATE

 

We "thought" we were going to go with meds very temporarily and put ds on the SCD diet (Breaking the Vicious Cycle). After our big appointment with our ped. G.I., now I am really confused. He says that diet alone cannot manage crohn's in pediatric cases because they are more aggressive. He wants DS on a maintenance med that comes with a list of side effects. It is actually a chemo drug. I am so torn. I REALLY want to avoid meds, but DS's Dr is convinced that all diet does is helps with symptoms (diarrhea, etc), while crohn's could be raging inside. I would LOVE any thoughts, feedback, or experiences with this.

[Ann.without.an.e]

Bumping for update, in hope of some input from mamas with experience :)

[HLDoll]

UPDATE

 

We "thought" we were going to go with meds very temporarily and put ds on the SCD diet (Breaking the Vicious Cycle). After our big appointment with our ped. G.I., now I am really confused. He says that diet alone cannot manage crohn's in pediatric cases because they are more aggressive. He wants DS on a maintenance med that comes with a list of side effects. It is actually a chemo drug. I am so torn. I REALLY want to avoid meds, but DS's Dr is convinced that all diet does is helps with symptoms (diarrhea, etc), while crohn's could be raging inside. I would LOVE any thoughts, feedback, or experiences with this.

 

 

My 8 year old son was diagnosed with Crohn's back in May. His GI doesn't think that diet has anything to do with it, which boggles my mind. He wanted to start meds right away, but I asked if we could do SCD for a while to see if it helped. He reluctantly agreed, but said that at the first sign of bleeding again, he wanted a phone call and DS on the meds. It took 1 week for the bleeding to subside (stools actually got worse for a few days, which i think was detox), but its now been about 6 months and my son is doing well. His last round of bloodwork showed lowered inflammation markers also. GI just thinks we're not in a flare right now. I realize SCD may not cure him, and maybe he'll need meds one day, but we're doing well with it now. GI's main concern is that DS is not gaining weight. He's grown a bit taller and is maintaining, but hasn't gained these past 6 months. Our primary care doc has autoimmune issues and advocates diet changes, and she said it was a good 6 months before she was able to gain weight. She thinks a certain amount of healing must take place in the gut first, so she said she wouldn't worry for a few more months about the weight. We had a bone scan and are also dealing with osteoporosis due to absorption issues, so my husband runs with our son and we try to get in jump roping time each week to help build bone. If you really want to try diet for a while before meds, push for a trial. I was afraid if we started both at the same time, we wouldn't know which one was helping. I'm glad we've had these months of adhering to SCD. It's been challenging, and there have been days when I want to give up, put him on drugs and let him eat whatever, but the fact that he has been doing better on the diet keeps us motivated to continue. I was glad our diagnosis came in the spring. I'd take my son to the farmers market every week and hand him money and let him pick out produce, and that got him trying things he'd never have eaten before. And there really are wonderful things you can make with coconut flour, almond flour, and honey.

[Researcher]

First of all, :grouphug:

 

I have a family member with Crohn's and it has been really tough, but there is help out there. You are absolutely right that diet plays a key role in dealing with this.

 

I recommend the following books: Breaking the Vicious Cycle and Gut and Psychology Syndrome. Don't let the title of the latter one throw you. It is very good information on diet relating to any inflammatory or auto-immune condition. It's a long read, but tons of great info in there.

 

As a parent, the meds would be a very tough call. I understand where the Dr. is coming from. Inflammatory conditions can be worse it kids due to the constant changing nature of the body. Those meds are life savers for some, but they do come with side effects. Do as much research as you can before you make a decision. Although, if meds are needed, don't be afraid to reach out the the Dr. for help.

 

If it were me, I think I would try the diet first. And I mean go at it full force. Read all the books, medical studies, and other info available. Then buy whatever kitchen supplies you need to get started. For example - you might need a dehydrator, crock pot, pickl-it jars, or juicer. It will take planning, time, and work.....but I don't think you'll really be able to tell if diet can help unless you do it to the full extent.

 

Disclaimer: the advice is intended as opinion only and not professional medical advice ;)

[Ann.without.an.e]

My 8 year old son was diagnosed with Crohn's back in May. His GI doesn't think that diet has anything to do with it, which boggles my mind. He wanted to start meds right away, but I asked if we could do SCD for a while to see if it helped. He reluctantly agreed, but said that at the first sign of bleeding again, he wanted a phone call and DS on the meds. It took 1 week for the bleeding to subside (stools actually got worse for a few days, which i think was detox), but its now been about 6 months and my son is doing well. His last round of bloodwork showed lowered inflammation markers also. GI just thinks we're not in a flare right now. I realize SCD may not cure him, and maybe he'll need meds one day, but we're doing well with it now. GI's main concern is that DS is not gaining weight. He's grown a bit taller and is maintaining, but hasn't gained these past 6 months. Our primary care doc has autoimmune issues and advocates diet changes, and she said it was a good 6 months before she was able to gain weight. She thinks a certain amount of healing must take place in the gut first, so she said she wouldn't worry for a few more months about the weight. We had a bone scan and are also dealing with osteoporosis due to absorption issues, so my husband runs with our son and we try to get in jump roping time each week to help build bone. If you really want to try diet for a while before meds, push for a trial. I was afraid if we started both at the same time, we wouldn't know which one was helping. I'm glad we've had these months of adhering to SCD. It's been challenging, and there have been days when I want to give up, put him on drugs and let him eat whatever, but the fact that he has been doing better on the diet keeps us motivated to continue. I was glad our diagnosis came in the spring. I'd take my son to the farmers market every week and hand him money and let him pick out produce, and that got him trying things he'd never have eaten before. And there really are wonderful things you can make with coconut flour, almond flour, and honey.

 

Thank you so very much. It is helpful to know that you have chosen a diet route and that it seems to be working so far. Most parents choose the medicine route and frown when I ask about diet instead. We do have him on Prednisone for now and I am not crazy about it. I have him on only half of what his doctor wants him on and I think I will taper it down once we start the diet. I ordered the book but it hasn't arrived yet. We already have him on a GF DF diet so we are almost there I am sure.

[Ann.without.an.e]

First of all, :grouphug:

 

I have a family member with Crohn's and it has been really tough, but there is help out there. You are absolutely right that diet plays a key role in dealing with this.

 

I recommend the following books: Breaking the Vicious Cycle and Gut and Psychology Syndrome. Don't let the title of the latter one throw you. It is very good information on diet relating to any inflammatory or auto-immune condition. It's a long read, but tons of great info in there.

 

As a parent, the meds would be a very tough call. I understand where the Dr. is coming from. Inflammatory conditions can be worse it kids due to the constant changing nature of the body. Those meds are life savers for some, but they do come with side effects. Do as much research as you can before you make a decision. Although, if meds are needed, don't be afraid to reach out the the Dr. for help.

 

If it were me, I think I would try the diet first. And I mean go at it full force. Read all the books, medical studies, and other info available. Then buy whatever kitchen supplies you need to get started. For example - you might need a dehydrator, crock pot, pickl-it jars, or juicer. It will take planning, time, and work.....but I don't think you'll really be able to tell if diet can help unless you do it to the full extent.

 

Disclaimer: the advice is intended as opinion only and not professional medical advice ;)

 

Thank you for your thoughts, they are very helpful. I am info hungry right now :)

[LifeLovePassion]

I hate that GI docs dismiss diet all together. It makes no sense, whatsoever. I mean everyone knows if you eat beans you will probably have gas, you can't tell me what you eat doesn't make a difference. I did find a doc to be more accepting of diet and I have been off meds (was on imuran) for 8-9 months now. I am not 100% SCD, it's been a slow process of change for me, and now I can feel it when I do eat non-SCD legal stuff so I continue to limit it more and more.

[LifeLovePassion]

I hate that GI docs dismiss diet all together. It makes no sense, whatsoever. I mean everyone knows if you eat beans you will probably have gas, you can't tell me what you eat doesn't make a difference. I did find a doc to be more accepting of diet and I have been off meds (was on imuran) for 8-9 months now. I am not 100% SCD, it's been a slow process of change for me, and now I can feel it when I do eat non-SCD legal stuff so I continue to limit it more and more.

[Ann.without.an.e]

I hate that GI docs dismiss diet all together. It makes no sense, whatsoever. I mean everyone knows if you eat beans you will probably have gas, you can't tell me what you eat doesn't make a difference. I did find a doc to be more accepting of diet and I have been off meds (was on imuran) for 8-9 months now. I am not 100% SCD, it's been a slow process of change for me, and now I can feel it when I do eat non-SCD legal stuff so I continue to limit it more and more.

 

I just got and started reading "Breaking the Vicious Cycle" and it makes more sense than anything else I have read. I have been doing a lot of reading so this surprises me.

[Twilight Woods]

I havent read all the replies yet...

 

I was DX with Crohns at the age of 10. DIET plays a HUGE factor with how I feel/tolerate foods.

 

PM if you have any specific questions .

 

[still trying to figure out the new board system]

[Ann.without.an.e]

I havent read all the replies yet...

 

I was DX with Crohns at the age of 10. DIET plays a HUGE factor with how I feel/tolerate foods.

 

PM if you have any specific questions .

 

[still trying to figure out the new board system]

 

 

Thanks, I will.

[Researcher]

http://seattletimes.com/html/localnews/2002231142_brodeur05m.html

 

Mike McCready from Pearl Jam talks about living with Crohn's and using the SCD. Maybe it would help your little knowing there are others out there dealing with this.

[Ann.without.an.e]

I just thought I would update, just in case someone searches and refers to this thread in the future. We have been on the SCD (Breaking the Vicious Cycle) for over 3.5 months. This forum is the only place that told me about this book and encouraged me to try this route. The doctor said "diets don't work" and a crohn's specific forum really frowned when I asked about the diet route (instead of meds). I

My ds went from 92 pounds to 72 pounds before he finally stopped dropping weight and started feeling better. At first we tried the pred. and it just made him more sick (thus even more weight loss) so we stopped it. We never went on the big gun meds like the pediatric specialist wanted. Instead we just continued on with the SCD. At first, we had to use an altered form of SCD. He was just so messed up inside that he couldn't digest most fruits and veggies (even cooked) or beef. We started with a very bland diet of chicken, pork, applesauce, eggs, bananas, and a few well cooked veggies. As he healed we added in SCD safe foods. He can now eat beef, most fruits and veggies (even raw), nuts, etc. This is a huge sign to us that he is healing on the inside.

We just had another big check up with the specialist. Ds weighed 84 pounds, has increased 3/4 inch in height in only 2 months, and for the first time he had no blood in his stool. I am still waiting to hear about the lab results. I am hopeful that they are also improved.

I felt the need to update in order to say thank you for you help and input. Also, just in case someone else needed to see these results as they consider what to do about their situation.

I'm updating again because I realize that sometimes people refer to old posts

 

It is July, 2015

 

I am still very glad we didn't jump right away on the meds train.  The diet did work to an extent for ds.  He improved.  He didn't improve enough to continue the SCD and feel comfortable about no meds.  They were grueling for ds.  It was very restrictive as far as what he could and couldn't eat. I wanted to try it though - the med side effects are scary and I wasn't going to try meds first.  It would have to be a last resort for me.  DS improved on the diets but not enough to feel comfortable continuing to be med free.

 

After emphasizing to E's dr that we just really didn't want meds, he referred us to a research specialist at Chapel Hill.  They have had a good bit of success with liquid diets for children with crohn's disease.  After some time and thinking about it, we decided to give it a try.  DS says now that he would do it again in a heartbeat.  It has been (hands down) the best treatment we have encountered.  Friends and family are constantly commenting on how awesome he looks (his color is back, he is filling out, his growth is crazy!!!!).  He feels good .  So here is what the diet looks like (you don't need a research doctor to tell you how to do it - it is easy!).....

 

We use a product called Ensure Plus.  The only flavor E likes is chocolate.  It tastes like chocolate milk, I guess?  He doesn't mind it at all. 

Here is the hard part, even on Amazon subscribe and save, it really adds up.  It is worth every penny though.

 

He got every single calorie from this liquid meal replacement drink for about 12-14 weeks.  No solid food.  It was hard, but again...he says he would do it again in a heart beat.  After the initial completely liquid phase we very slowly introduced easy to digest solid food.  For example, the first week we let him have a tiny bit of apple sauce, banana, and mashed potatoes (not exceeding 10% of his total calorie intake for the day).  The next week we still kept him at about 10% solid calories and 90% liquid but we let him have some plain chicken, etc.  The next week we increased his solid calories to 20% and kept him there for about two weeks (still using fairly easy to digest foods).  We ever so slowly increased the solid food and the complexity of the foods until we were about 30-40% solid food.  We have stayed at about 60-70% liquid/30-40% solid and he has only increased the variety of foods since hitting that range.  He still eats gluten and lactose free but other than that he is very free in his food choices.  We have noticed that he will get symptomatic a little if he has a virus or other illness.  If he cuts back to liquid only for 24-72 hours then he rebounds quickly.  Any time he gets symptomatic he goes liquid (which is rare unless he is fighting a virus).  He has gone from 10-15th% in height and weight to 75th% in both height and weight.  It is crazy how his growth, height, color, energy, etc have improved in just under a year. 

 

[Ann.without.an.e]

Moved to chat, thanks :)

[elfgivas]

char, this is great news! doing the happy dance. celebrate what is working now!!! i am so glad you tried it. exercise is our other go-to solution.

 

the caveat? it can go into remission and then reappear, and as he ages and hormones change, some tweaking may be necessary. i was drug-free until my late 40s, but now take something every day..... everything else still helps, just not enough.

 

thanks for sharing the good news!

ann

[Beth in OH]

My family is not affected by Celiac or Chron's, but I learn so much from posts like this. Also, I work with lots of people, so sometimes I am able to point a person in a direction they hadn't considered. Thanks for updating and teaching all of us!

[Lori D.]

nm oops