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Has SCD diet helped anyone with IBD?

R

Rrahman

My daughter was diagnosed with Crohn's in Dec. 2013. The doc wanted to put her on med but my husband and I managed to keep her off the typical Crohn's med so far, fighting with the doctor and stressing on food. She has been suffering from flare ups every now and then and is being treated with Flagyl. When having a flare up she is put on Flagyl for a month and it seems to work for her.
We are big on healthy eating, organic food, grass-fed products, and juicing. Since her diagnosis, we experimented with different diets and ended up with SCD diet (grain-free, sugar-free, lactose-free). After putting her on SCD her flare ups are lot less frequent than before. This time she was symptom free for over 3 months. She's back on Flagyl from yesterday.
 
my little penguin

my little penguin

Moderator
Staff member
Scd can work in some but not the large majority
Optimistic is a good example

That said forbit to work basically means your not flaring
Flaring is inflammation each cycle causes scar tissue
Your intestine is like a garden hose extremely flexible
Each cycle of inflammation can lead to narrowing ( strictures ) or fistulas ( thin tunnels formed by the body due to increased pressure)
Once the scar tissue is there that section of instestine is like a pvc pipe solid rigid and unusable which can lead to obstruction.

If scd was working you wouldn't need meds every few months for flares
Damage in the inside can be far worse than the symptoms on the outside
Cells left to inflame over and over again are at high risk of cancer
Crohns is very high risk for cancer of the small intestine .

I am not saying scd doesn't work it does but flaring is not a sign of it working


That said many use diet as an adjunct to keep the gut and body as healthy as possible
Ds follows a modified diet
And Crohnsinct can elaborate on her many diet trials

Btw no drug or food is harmless
Flagyl has high risk of neuropathy
Tylenol can kill or damage the liver
Ginger ( herb) can be toxic cause lots of Gi distress
 
R

Rrahman

Thanks for your input. Got me thinking about ginger. :shifty-t:
About SCD diet, my daughter has been strictly on the diet for over 4 months now. We are not happy about giving her Flagyl over and over either. Will consider Remicade on her next visit while still continuing SCD.
Thanks a lot.
 
Optimistic

Optimistic

Hi. My son has been on SCD for a year and a half. He is closely, actually excessively, monitored by dr with labs, fcp tests and has had 2 colonoscopies in this time. Dr said with one flare or sign of tests going wrong direction he would advise meds. Knock on wood, good for now. He also is on about 20-30% EN (eloccare Jr, boost, ensure).

The frequent flares your daughter has worry me. Is she improving? Are you militant about the diet, as in crazy obsessed? We work with a dietician who is doing Scd studies. Do you have access to this type of resource?

My son does take omeprozole to help with inflammation he had in duodeum. I'm afraid to take him off. He had a ridiculously long course of steroids followed by EEN so I can't isolate what helped him most but we are staying with this for now.
 
Maya142

Maya142

Moderator
Staff member
We are also in NJ and go to CHOP - they have a lot of diet studies. That's one place you could try if you want a dietician who knows about IBD and diet.

I will say that our GI at CHOP said there was not enough evidence that the SCD worked. She said the only diet that we know works is EEN - and at CHOP, kids are usually given semi-elemental formula for it (Peptamen Jr or Pediasure Peptide). Some kids drink the shakes and others use an NG tube.

However, we did talk to her about the SCD 3 years ago and haven't asked since, since my daughter is doing well on medications. She does still get formula (Neocate since she could not tolerate Peptamen Jr) as part of her diet.

There are more studies about diet now and CHOP has definitely been focusing on nutrition.

There are some presentations on diet here:http://www.chop.edu/health-resources/ibd-education-day-handouts#.VwWV42OFk_0
 
C

crohnsinct

Well-known member
I am crazy obsessed with diet.

My older daughter was too severe to start with that and once on Remicade, I didn't want to chance taking her off to try diet. WEedid have trouble tapering steroids at the beginning so we used EEN to get her to a good solid remission so Remicade could take over from there. She has remained in remission since. We used a clean diet approach with O and she really responds. While Remicade definite maintains a remission of sorts, the clean diet gave her an added boost with weight gain, energy etc. At the time our GI didn't really believe in diet but after seeing the effect it had for my daughter and what happens when she goes off he is a believer of diet to complement meds.

My second daughter was more mild. We were able to induce remission with EEN, however, we also started her on Methotexate. Once the Exclusive period was over we used a strict diet. Within weeks her inflammation returned, even on Mtx. We then added Entocort, which didn't get her to remission. Another round of EEN worked and then we used the IBD - AID diet (based on the SCD diet) with slow reintro, again within weeks her inflammation returned. Unfortunately the diet approach didn't work for my daughter but then again it looks like even the med she is on won't work either.

I have weekly chats with the dietician at our hospital. To date there are no studies that prove endoscopic mucosal healing using diet alone. Plenty of symptom resolution though. It is however becoming the focus of much research and attention.

The best diet approach I have seen to date is a period of exclusive enteral nutrition followed by a defined diet with a very slow reintro of foods and foods not to exceed 50% of the diet...formula being the other 50%. The other approach is a month long period of EEN followed by slow reintro of regular diet for another 2 months and then back to EEN and so on.

Maya is right in that CHOP is doing a lot of the research and practice on these methods.

I also agree that your daughter does not seem to be in a deep remission...although she could be if these symptoms are just an IBS or gastroparesis overlay but the only way to determine that would be scopes and imaging.

Good luck with your journey and keep us posted!
 
R

Rrahman

Glad to know your son is doing well on SCD. My daughter is doing a lot better than she had been last year. This is her first flare this year.

We put her on SCD last year but was not following it properly. We allowed occasional party food and restaurant food. Beginning this January,she is on the diet in proper sense. I make all her food from scratch. Even make yogurt at home following SCD recipe. Her doc is planning to put her on Remicade since long-term antibiotic will have adverse effect on health. Ramicate is not benign either. But guess we can't have it both ways.
Optimistic said:
Hi. My son has been on SCD for a year and a half. He is closely, actually excessively, monitored by dr with labs, fcp tests and has had 2 colonoscopies in this time. Dr said with one flare or sign of tests going wrong direction he would advise meds. Knock on wood, good for now. He also is on about 20-30% EN (eloccare Jr, boost, ensure).

The frequent flares your daughter has worry me. Is she improving? Are you militant about the diet, as in crazy obsessed? We work with a dietician who is doing Scd studies. Do you have access to this type of resource?

My son does take omeprozole to help with inflammation he had in duodeum. I'm afraid to take him off. He had a ridiculously long course of steroids followed by EEN so I can't isolate what helped him most but we are staying with this for now.
Click to expand...
 
R

Rrahman

My daughter's GI says she has nothing against SCD but doesn't believe it can cure her. It's true there is not enough evidence but reading about the studies done on SCD gives me and my husband plenty of hope. Probably, SCD in combination with med is the answer.
We also tried Peptamen Jr. but she couldn't tolerate it.
Thanks a lot for the web link. I'll check it out.
Maya142 said:
We are also in NJ and go to CHOP - they have a lot of diet studies. That's one place you could try if you want a dietician who knows about IBD and diet.

I will say that our GI at CHOP said there was not enough evidence that the SCD worked. She said the only diet that we know works is EEN - and at CHOP, kids are usually given semi-elemental formula for it (Peptamen Jr or Pediasure Peptide). Some kids drink the shakes and others use an NG tube.

However, we did talk to her about the SCD 3 years ago and haven't asked since, since my daughter is doing well on medications. She does still get formula (Neocate since she could not tolerate Peptamen Jr) as part of her diet.

There are more studies about diet now and CHOP has definitely been focusing on nutrition.

There are some presentations on diet here:http://www.chop.edu/health-resources/ibd-education-day-handouts#.VwWV42OFk_0
Click to expand...
 
R

Rrahman

It's amazing how different people react differently to a certain med or food. My daughter also tried EEN (Peptamen Jr.)according to her nutritionist's suggestion but her stomach didn't tolerate it. Now she is on SCD. We are also doing research on AID.
Once her month long Flagyl course is over we'll consider putting her on Remicade. Who knows which one will do her more harm (or good). We just feel so helpless sometimes. It's good to know there are others who can relate to our concerns.
Thank you so much for sharing.
crohnsinct said:
I am crazy obsessed with diet.

My older daughter was too severe to start with that and once on Remicade, I didn't want to chance taking her off to try diet. WEedid have trouble tapering steroids at the beginning so we used EEN to get her to a good solid remission so Remicade could take over from there. She has remained in remission since. We used a clean diet approach with O and she really responds. While Remicade definite maintains a remission of sorts, the clean diet gave her an added boost with weight gain, energy etc. At the time our GI didn't really believe in diet but after seeing the effect it had for my daughter and what happens when she goes off he is a believer of diet to complement meds.

My second daughter was more mild. We were able to induce remission with EEN, however, we also started her on Methotexate. Once the Exclusive period was over we used a strict diet. Within weeks her inflammation returned, even on Mtx. We then added Entocort, which didn't get her to remission. Another round of EEN worked and then we used the IBD - AID diet (based on the SCD diet) with slow reintro, again within weeks her inflammation returned. Unfortunately the diet approach didn't work for my daughter but then again it looks like even the med she is on won't work either.

I have weekly chats with the dietician at our hospital. To date there are no studies that prove endoscopic mucosal healing using diet alone. Plenty of symptom resolution though. It is however becoming the focus of much research and attention.

The best diet approach I have seen to date is a period of exclusive enteral nutrition followed by a defined diet with a very slow reintro of foods and foods not to exceed 50% of the diet...formula being the other 50%. The other approach is a month long period of EEN followed by slow reintro of regular diet for another 2 months and then back to EEN and so on.

Maya is right in that CHOP is doing a lot of the research and practice on these methods.

I also agree that your daughter does not seem to be in a deep remission...although she could be if these symptoms are just an IBS or gastroparesis overlay but the only way to determine that would be scopes and imaging.

Good luck with your journey and keep us posted!
Click to expand...
 
Sudsy

Sudsy

My older daughter was on strict SCD for five years. It was GREAT for her and she was able to be totally off meds for well over two years (with frequent checking on labs, etc). While it was quite hard to follow the diet so strictly (birthday parties were extremely challenging, as she was between 8-13 when she followed SCD), it was truly amazing to see her so healthy.

When she was 13 she decided she wanted to be able to go for pizza and ice cream with her friends, and slowly transitioned off. I kept making SCD yogurt for the next few years (the one thing I recommend if people are going to try only one SCD thing).

Are you on the Pecanbread Yahoo Group? Very helpful. Also, since everyone there is using SCD you will only get positive feedback about it :)

Good luck figuring it out and may all our kids soon now complete good health.
 
Maya142

Maya142

Moderator
Staff member
My daughter's GI says she has nothing against SCD but doesn't believe it can cure her.
Click to expand...
Unfortunately, nothing can "cure" Crohn's. Meds can keep it in remission but they cannot make it go away. For a certain subset of people, perhaps diet can keep it in remission too (I don't think that has been proven yet but I may be wrong about that - except for EEN which can definitely induce remission) but nothing can "cure" it and make it go away forever.

Hopefully there will be a cure in the future.
 
CrohnsDadNJ

CrohnsDadNJ

My son's GI introduced us to SCD, and suggested we try it. It was as a complement to traditional therapy (prednisone to tamp down flare and Remicade 8 week dosing schedule), not a substitute.

We found SCD a bit too restrictive, so we are using IBD AID. Its a derivative of SCD. http://www.umassmed.edu/nutrition/ibd/ibdaid/

Yes, there's a lot of research ongoing about diets and IBD. In addition to CHOP and UMass, Seattle Children's Hospital recently sent around their (promising) initial results of a study of SCD in kids to various pediatric GIs; its pre publication, I believe. PCORI just recently gave $2.5 million to CCFA to study SCD and Mediterranean diets for IBD patients. There's no definitive, large scale studies establishing robust benefits so far. The mostly encouraging results are narrowly defined and small sample size studies.
 
R

Rrahman

SCD seems to work for our daughter. We started SCD last year but didn't stay on it strictly, allowing occasional illegal food. After her flare in Nov. 2015 we put her back on SCD and has kept her on the diet since. I make all her food from scratch, make SCD yogurt. She is not on medication but when having a flare she's put on a month long Flagyl course. That works for her. She is on Flagyl now. Her flare started on April 4, four months after her last flare. It was heartbreaking for me. But with SCD we have to be patient. I will explore the Pecanbread Yahoo Group.
Thanks a lot for sharing. Your daughter's story is very encouraging. I hope your other kids also respond to SCD well.
Sudsy said:
My older daughter was on strict SCD for five years. It was GREAT for her and she was able to be totally off meds for well over two years (with frequent checking on labs, etc). While it was quite hard to follow the diet so strictly (birthday parties were extremely challenging, as she was between 8-13 when she followed SCD), it was truly amazing to see her so healthy.

When she was 13 she decided she wanted to be able to go for pizza and ice cream with her friends, and slowly transitioned off. I kept making SCD yogurt for the next few years (the one thing I recommend if people are going to try only one SCD thing).

Are you on the Pecanbread Yahoo Group? Very helpful. Also, since everyone there is using SCD you will only get positive feedback about it :)

Good luck figuring it out and may all our kids soon now complete good health.
Click to expand...
 
my little penguin

my little penguin

Moderator
Staff member
So Rrahman
I am confused your last post you said it was working but your dd is on flagyl for a month at a time
Our Gi maxed out at 14 days.

So how many flares has she had since dx and how many rounds of flagyl ?
How has her blood markers /scopes /imaging been since dx and staying on scd ?
How has her weight and growth been?

These are things that show treatment is working or still working kwim.
 
R

Rrahman

You might be right: there is no "cure", but I'm keeping my hopes high and do all I can not to aggravate her condition. I do believe in the healing power of food. My daughter tried EEN but her her stomach couldn't handle it. There is no easy way out for us I guess.
Maya142 said:
Unfortunately, nothing can "cure" Crohn's. Meds can keep it in remission but they cannot make it go away. For a certain subset of people, perhaps diet can keep it in remission too (I don't think that has been proven yet but I may be wrong about that - except for EEN which can definitely induce remission) but nothing can "cure" it and make it go away forever.

Hopefully there will be a cure in the future.
Click to expand...
 
R

Rrahman

Staying on SCD can be quite challenging. I also explored AID and tried adding miso to my daughter's diet but it didn't go well.
Good to know people started thinking out of the box and focusing on the "cause" of problems.
Thanks for sharing.
CrohnsDadNJ said:
My son's GI introduced us to SCD, and suggested we try it. It was as a complement to traditional therapy (prednisone to tamp down flare and Remicade 8 week dosing schedule), not a substitute.

We found SCD a bit too restrictive, so we are using IBD AID. Its a derivative of SCD. http://www.umassmed.edu/nutrition/ibd/ibdaid/

Yes, there's a lot of research ongoing about diets and IBD. In addition to CHOP and UMass, Seattle Children's Hospital recently sent around their (promising) initial results of a study of SCD in kids to various pediatric GIs; its pre publication, I believe. PCORI just recently gave $2.5 million to CCFA to study SCD and Mediterranean diets for IBD patients. There's no definitive, large scale studies establishing robust benefits so far. The mostly encouraging results are narrowly defined and small sample size studies.
Click to expand...
 
R

Rrahman

Hi. This is my daughter's fourth round of Flagyl in one year. We started SCD last year but didn't follow it strictly, allowing occasional outside food. After her last flare on Nov. 2015 we put her back on SCD and she was symptom free for 4 months. That was a positive sign. She is not on any med other than Flagyl during a flare.
Her present flare that started beginning of April left me feeling devastated. I went back to reading Breaking the Vicious Cycle and found out that two or three months after starting the diet a relapse is sometimes possible. After getting better, recovery is usually steady with minor setbacks for the first year. Got my hope back.
About her weight, she is underweight but she has been on the lower end all her life.
She has her labwork done frequently and during a flare her CRP level is ofcourse high.
Thanks for your concern. Appreciate it.
my little penguin said:
So Rrahman
I am confused your last post you said it was working but your dd is on flagyl for a month at a time
Our Gi maxed out at 14 days.

So how many flares has she had since dx and how many rounds of flagyl ?
How has her blood markers /scopes /imaging been since dx and staying on scd ?
How has her weight and growth been?

These are things that show treatment is working or still working kwim.
Click to expand...
 
pdx

pdx

I am sorry to hear about your daughter's flare. Like many others on this forum, I believe that SCD works for some kids, but not all, or maybe not in all situations. When my daughter was diagnosed, she was very ill and started Remicade immediately. We decided to try the SCD diet at the same time, since we had read many promising things about it. We followed it very strictly for a month, and it was amazing how fast it resolved her external symptoms (pain, nausea, diarrhea). However, she continued to lose weight that month, and her blood inflammatory markers continued to go up. Our doctor finally told us that we needed to choose EEN or TPN, since my daughter was so malnourished that her body wasn't going to be able to heal itself no matter what treatments she did.

She was on EEN for 8 weeks, and gained 20 pounds during that time. She continued to gain weight on supplementary EN for several more months, and by that time, her medications (Remicade and methotrexate) had finally kicked in. She's not on the SCD any more, although I continue to make most of her food from scratch, use honey when I need a sweetener, use bone broth in many recipes, etc.

She's now up 40 pounds from her lowest weight last year, growing consistently, starting puberty, and her inflammatory markers are all normal.

Sorry for the long response, but when you mentioned that your daughter had always been underweight, it reminded me so much of my daughter. She had been underweight for years, but we just assumed that that was how she was. While SCD took away many of my daughter's symptoms, in her case, it took EEN, Remicade and methotrexate to actually heal her intestines. It's been amazing watching her grow once that happened.

Good luck with whatever treatment you choose. I know the decisions are so hard to make.
 
Maya142

Maya142

Moderator
Staff member
I wanted to add - you said your daughter could not tolerate Peptamen Jr. Mine couldn't either, she had diarrhea about 10 times a day when she was on it.

Some kids need a more broken down formula - an elemental formula. We switched to Neocate. Elemental formulas like Neocate and Elecare do taste bad (worse than Peptamen Jr) and so my daughter did use a feeding tube.

My daughter gained 23 lbs with the Neocate. She has also always been a small kid, but she had become severely malnourished and very underweight in the last two years. She was actually hospitalized 3 separate times for that and even developed refeeding syndrome when we started the tube feeding (luckily, she was in the hospital for that and they were able to monitor her electrolytes and she was fine).

Now she is at a healthy weight, still gets formula at night but eats during the day and feels MUCH better. She has more energy (she was so malnourished and weak that she was essentially in bed all day).

These decisions are very difficult - we also agonized and agonized about putting our daughters on medications. But at some point, the disease became scarier than the medications.

If your daughter is flaring 4 times a year, her disease is not under control. The worry is that over time, scar tissue builds up because of the inflammation and the only way to fix that is surgery. Kids can also have inflammation and be completely asymptomatic, so even if she feels well, it doesn't necessarily mean everything is ok on the inside. The high CRP points to ongoing inflammation.

Good luck with whatever you choose.
 
pdx

pdx

Maya142 said:
I wanted to add - you said your daughter could not tolerate Peptamen Jr. Mine couldn't either, she had diarrhea about 10 times a day when she was on it.
Click to expand...
Mine too. First she tried drinking Pediasure, Ensure, and Boost, and those gave her stomach pain. Then she tried Peptamen Jr via NG-tube, and that made her nauseated. She finally ended up on adult Peptamen 1.5, via NG-tube, at a very slow rate. It took us several weeks to find a formula that worked for her. Lots of trial and error.
 
my little penguin

my little penguin

Moderator
Staff member
Yep same here
Pre dx Ds stopped gaining weight then started losing it
He started kids boost but didn't even tolerate that after a bit
Tried 6 different formula including elemental
He started EEN at age 7 on peptamen Jr orally
He is back to drinking 50% of his calories from peptamen Jr
Plus restrictive diet ( no gluten no lactose low fiber low fat plus lots of other stuff )
Plus humira and Mtx

Oh and his Crohn's disease per scopes is mild btw
No ulcers or fistulas or structures
 
D

DDA

Rrahman said:
My daughter was diagnosed with Crohn's in Dec. 2013. The doc wanted to put her on med but my husband and I managed to keep her off the typical Crohn's med so far, fighting with the doctor and stressing on food. She has been suffering from flare ups every now and then and is being treated with Flagyl. When having a flare up she is put on Flagyl for a month and it seems to work for her.
We are big on healthy eating, organic food, grass-fed products, and juicing. Since her diagnosis, we experimented with different diets and ended up with SCD diet (grain-free, sugar-free, lactose-free). After putting her on SCD her flare ups are lot less frequent than before. This time she was symptom free for over 3 months. She's back on Flagyl from yesterday.
Click to expand...
what is her vitamin D status? have you tried MCT oil?
 
R

Rrahman

My biggest fear is whether we are doing the right thing or harming her unknowingly. Whatever we are doing it is my husband and my decision, not hers. That makes it even worse. SCD is not letting her gain weight with no carb. We tried putting her on EEN (Peptamen JR.) but her stomach didn't handle it well. I don't understand why it works for so many and not her.

I'm scared even to think of the aftermath of putting her on Flagyl so frequently. And I have such mixed feelings about Remicade. I wish we could let someone else decide for us, like the doc. Her follow up checkup is next month. Will see what the doctor says.
Glad to know your daughter is doing well.
Thanks for sharing.
pdx said:
I am sorry to hear about your daughter's flare. Like many others on this forum, I believe that SCD works for some kids, but not all, or maybe not in all situations. When my daughter was diagnosed, she was very ill and started Remicade immediately. We decided to try the SCD diet at the same time, since we had read many promising things about it. We followed it very strictly for a month, and it was amazing how fast it resolved her external symptoms (pain, nausea, diarrhea). However, she continued to lose weight that month, and her blood inflammatory markers continued to go up. Our doctor finally told us that we needed to choose EEN or TPN, since my daughter was so malnourished that her body wasn't going to be able to heal itself no matter what treatments she did.

She was on EEN for 8 weeks, and gained 20 pounds during that time. She continued to gain weight on supplementary EN for several more months, and by that time, her medications (Remicade and methotrexate) had finally kicked in. She's not on the SCD any more, although I continue to make most of her food from scratch, use honey when I need a sweetener, use bone broth in many recipes, etc.

She's now up 40 pounds from her lowest weight last year, growing consistently, starting puberty, and her inflammatory markers are all normal.

Sorry for the long response, but when you mentioned that your daughter had always been underweight, it reminded me so much of my daughter. She had been underweight for years, but we just assumed that that was how she was. While SCD took away many of my daughter's symptoms, in her case, it took EEN, Remicade and methotrexate to actually heal her intestines. It's been amazing watching her grow once that happened.

Good luck with whatever treatment you choose. I know the decisions are so hard to make.
Click to expand...
 
R

Rrahman

She takes vit. D3 5000 iu (Physiologics) 5 days a week and her D level is within normal range. This week we are also giving her Cod Liver oil along with D for better absorption. I havn't tried MCT oil but will explore.
Thanks for the info.
DDA Doc said:
what is her vitamin D status? have you tried MCT oil?
Click to expand...
 
my little penguin

my little penguin

Moderator
Staff member
Did you try any other formulas ?
Peptide or elecare or neocate or vionex or ...
There are a lot out there
Also was she in a full flare when you tried ?
You said her stomach didn't tolerate it
How ? Did she vomit ? Or just get nauseous ?
Symptoms don't resolve with EEN for a while similar to steriods it can take up to 8 weeks to start to work .
Did she try kids boost or pediasure ?
Was it taste ?
Did she use an ng tube ?
Have you discussed the options with her ?
At 11 our Gi openly discussed options with Ds to get his buy in which is important
Lack of weight gain is a red flag for moderate disease in kids by itself without anything else

Since she is on full scd are you and your husband also eating scd ?
Are you tracking calorie intake with an app like my fitness pal to determine if she simple isn't eating enough ?

I get the whole lets just use foid to fix this honest
5 years ago I didn't even want Ds to take Pentasa ( which is useless by itself btw)
And with each med change I was in tears wondering if it was decision

We have tried it all with Ds and still looking for the magic
Including many many food diets
So your not alone

Learning when something isn't working and it's time to change is the hardest of all
 
R

Rrahman

She hadn't tried any other formula but Peptamen Jr. (other than organic Muscle Milk that we tried as a boost probably more than a year ago, but she hated it). I believe she was having a flare when she tried Peptamen after consulting her nutritionist. My daughter is an extremely picky eater and doesn't accept any new food without much fight.
The rest of the family is not on SCD but we drastically cut down on carb after putting her on SCD. I don't keep calorie count. Try to give her high calorie food: grass-fed whole milk yogurt that I make, grass fed aged cheese, grass fed butter, nut butter muffin, nut flour crepe, grass fed beef, organic chicken, organic egg, wild caught fish.....My life is basically wrapped around her finger. But obviously I'm not doing enough otherwise she wouldn't be sick. Her doc discusses everything with her (she's 15) .We are thinking of starting Remicade if she wants to. Might make me cry after all my hard work to keep her off meds.
 
Clash

Clash

I understand your fear of meds but the damage that can occur with under controlled or uncontrolled CD can be serious. It doesn't matter the treatment regimen ie diet or meds, if inflammation continues to simmer it creates scar tissue that can lead to narrowing, obstructions and surgeries. So, no matter the route you choose it's important that the result be keeping the bowel healthy, if over a period of time this isn't being achieved then it's time to reevaluate, adjust and move on. It doesn't matter if it's diet or med.

As far as EEN or EN I totally understand, my son will not drink boost or ensure(he gags it all up) and couldn't take in peptamen orally so he used an ng tube. He placed the tube each night and took in formula by pump while he slept then removed the tube before heading to school. This was in an effort to gain weight before surgery so his EN was only supplemental not exclusive.

I hope your daughter finds remission quickly with whatever treatment you decide on. Hugs.
 
my little penguin

my little penguin

Moderator
Staff member
Big hugs
Your not making your Dd sick crohns is
Unfortunately you can chose a meds or a diet and it still not work
Btdt got a few t shirts for each med or diet

Add in your Dd is 15
That changes things
You really need her buy in otherwise it won't work
Fwiw Ds started remicade at the ripe old age of 8
And was switched to humira at 9
Sometimes the disease choses for you unfortunately


Keeping the intestine as healthy as possible for as long as possible is the key
 
Maya142

Maya142

Moderator
Staff member
Sending hugs!! It's so difficult. Especially with a teen - they have to be really onboard with a diet, otherwise it's just too easy for them to cheat at school.

Unfortunately, all meds do not work for everyone. The same way, diets don't work for everyone. It's really a very individual disease and there's no real way to know what will work without trying it. It's all trial and error and until you find the "right" combination, things are very difficult.

Remicade has a very good success rate and there are MANY, many success stories on the forum because of it.

My daughter actually liked the infusions because she got a chance to miss school, relax and watch TV. She had no side effects from Remicade, besides a little tiredness after the infusions. No increase in infections or anything like that.

The best part was that after 8 months of Remicade, scopes showed her colon looked "beautiful" -- all the inflammation and ulcers were gone! She still had mild inflammation in her small bowel, but everything was drastically better!

Good luck and hang in there! You're doing your best for your kiddo. Remember that!
 
R

Rrahman

I forgot to mention that Peptamen gave her diarrhea. If she eats anything with extreme negative attitude she gets diarrhea. That happened yesterday with ripe papaya. Now my papaya is being baked in the oven with cinnamon and honey as I'm writing this.

Thank you so much for your support.
 
R

Rrahman

I forgot to mention that Peptamen gave her diarrhea. If she eats anything with extreme negative attitude she gets diarrhea. That happened yesterday with ripe papaya. Now my papaya is being baked in the oven with cinnamon and honey as I'm writing this.

Thank you so much for your support.
my little penguin said:
Big hugs
Your not making your Dd sick crohns is
Unfortunately you can chose a meds or a diet and it still not work
Btdt got a few t shirts for each med or diet

Add in your Dd is 15
That changes things
You really need her buy in otherwise it won't work
Fwiw Ds started remicade at the ripe old age of 8
And was switched to humira at 9
Sometimes the disease choses for you unfortunately


Keeping the intestine as healthy as possible for as long as possible is the key
Click to expand...
 
R

Rrahman

Got me into tears. Thanks.
Glad to know about your daughter's recovery and feeling hopeful. Next month is her followup appointment. Will do what doctor says. Looks like I'm done with my husband and my decisions. :ybatty::ybatty:
Maya142 said:
Sending hugs!! It's so difficult. Especially with a teen - they have to be really onboard with a diet, otherwise it's just too easy for them to cheat at school.

Unfortunately, all meds do not work for everyone. The same way, diets don't work for everyone. It's really a very individual disease and there's no real way to know what will work without trying it. It's all trial and error and until you find the "right" combination, things are very difficult.

Remicade has a very good success rate and there are MANY, many success stories on the forum because of it.

My daughter actually liked the infusions because she got a chance to miss school, relax and watch TV. She had no side effects from Remicade, besides a little tiredness after the infusions. No increase in infections or anything like that.

The best part was that after 8 months of Remicade, scopes showed her colon looked "beautiful" -- all the inflammation and ulcers were gone! She still had mild inflammation in her small bowel, but everything was drastically better!

Good luck and hang in there! You're doing your best for your kiddo. Remember that!
Click to expand...
 
my little penguin

my little penguin

Moderator
Staff member
They did explain that for some kids all formula in equals all liquid out and other kids equals constipation
That is a given with EEN it's not peptamen Jr per say and not true diarrhea
Also negative attitude does not equal diarrhea
Crohns can cause a lot of food sensitivities and is very individualized
Add in when flaring the same food you ate yesterday and were fine with can cause belly pain and diarrhea out of the blue
We are dealing with that this week
 
R

Rrahman

It's so good to hear that someone with IBD is doing well and thriving. I haven't thought about Neocate that her sister was on as an infant since doc said she had milk protein allergy. She is a strong and healthy 16 year old now, with no food allergy. Thank God!
More than likely Neocate won't work with my younger daughter with her negative attitude towards liquid diet.
reading the blogs I'm feeling more and more hopeful about introducing Remicade.
Thanks for sharing.
Maya142 said:
I wanted to add - you said your daughter could not tolerate Peptamen Jr. Mine couldn't either, she had diarrhea about 10 times a day when she was on it.

Some kids need a more broken down formula - an elemental formula. We switched to Neocate. Elemental formulas like Neocate and Elecare do taste bad (worse than Peptamen Jr) and so my daughter did use a feeding tube.

My daughter gained 23 lbs with the Neocate. She has also always been a small kid, but she had become severely malnourished and very underweight in the last two years. She was actually hospitalized 3 separate times for that and even developed refeeding syndrome when we started the tube feeding (luckily, she was in the hospital for that and they were able to monitor her electrolytes and she was fine).

Now she is at a healthy weight, still gets formula at night but eats during the day and feels MUCH better. She has more energy (she was so malnourished and weak that she was essentially in bed all day).

These decisions are very difficult - we also agonized and agonized about putting our daughters on medications. But at some point, the disease became scarier than the medications.

If your daughter is flaring 4 times a year, her disease is not under control. The worry is that over time, scar tissue builds up because of the inflammation and the only way to fix that is surgery. Kids can also have inflammation and be completely asymptomatic, so even if she feels well, it doesn't necessarily mean everything is ok on the inside. The high CRP points to ongoing inflammation.

Good luck with whatever you choose.
Click to expand...
 
R

Rrahman

Sorry to hear that and hope she feels better,
Guess my daughter is a tough case. I'll see what she does with the baked papaya.
my little penguin said:
They did explain that for some kids all formula in equals all liquid out and other kids equals constipation
That is a given with EEN it's not peptamen Jr per say and not true diarrhea
Also negative attitude does not equal diarrhea
Crohns can cause a lot of food sensitivities and is very individualized
Add in when flaring the same food you ate yesterday and were fine with can cause belly pain and diarrhea out of the blue
We are dealing with that this week
Click to expand...
 
R

Rrahman

It's good your son is willing to cooperate. I feel angry at my daughter sometimes but also feel sad since she is deprived of almost all her favorite food: mac and cheese, French toast, and mostly my baked goodies.

We'll consider Remicade on her next doctor's visit.
Thanks for sharing.
Clash said:
I understand your fear of meds but the damage that can occur with under controlled or uncontrolled CD can be serious. It doesn't matter the treatment regimen ie diet or meds, if inflammation continues to simmer it creates scar tissue that can lead to narrowing, obstructions and surgeries. So, no matter the route you choose it's important that the result be keeping the bowel healthy, if over a period of time this isn't being achieved then it's time to reevaluate, adjust and move on. It doesn't matter if it's diet or med.

As far as EEN or EN I totally understand, my son will not drink boost or ensure(he gags it all up) and couldn't take in peptamen orally so he used an ng tube. He placed the tube each night and took in formula by pump while he slept then removed the tube before heading to school. This was in an effort to gain weight before surgery so his EN was only supplemental not exclusive.

I hope your daughter finds remission quickly with whatever treatment you decide on. Hugs.
Click to expand...
 
Maya142

Maya142

Moderator
Staff member
More than likely Neocate won't work with my younger daughter with her negative attitude towards liquid diet.
reading the blogs I'm feeling more and more hopeful about introducing Remicade.
Click to expand...
Believe me, if a negative attitude caused diarrhea, we would be in big trouble ;)! My daughter really, really, REALLY resisted a liquid diet. She hated Neocate but could not tolerate any of the other, more palatable formulas (Ensure, Boost, even Peptamen Jr). We had to eventually go to a feeding tube and she was SO against that. She refused it for so long that her weight just kept dropping lower and lower.

Finally her GI absolutely insisted and M felt so awful - she was so malnourished and had NO energy to do anything, and so she finally agreed to let them admit her. She absolutely HATED that feeding tube! But she did keep it in, mostly because we had exhausted all our other options.

Once she gained weight and started feel better, and she became very glad and grateful for the tube. She could not believe how good she felt when she finally started getting some good nutrition!

She started out with an NG tube (which she inserted and removed by herself), then an NJ tube and now has a more permanent GJ tube in her belly.

Your daughter is probably quite sick of all this and is also probably not feeling well since her Crohn's is not under control. Stomach pain, fatigue, nausea and generally just feeling unwell usually equal one cranky kiddo! And then you add in the regular teenage hormones ;).

It's important to remember that Crohn's isn't anyone's fault - it's not your fault and it's not her fault. It just is what it is. Sometimes it responds to diet and sometimes it doesn't. Sometimes kids do great on just one med and sometimes kids need a combination of meds. It's a nasty, sneaky disease but it can be controlled.

I will tag some parents who have kids who have done really well on Remicade -- crohnsinct, Mehita and Jmrogers4.
 
Clash

Clash

It wasn't really a choice to cooperate for my son to use a nasogastric tube to take in formula over night. He was under weight and scheduled to have surgery. He could either insert the tube an take formula overnight then remove the nasogastric tube each morning or he would be admitted to the hospital and given EEN or TPN.

Has she watched you tube videos of kids doing EEN with a nasogastric tube? There's a great one of an 8 or 9 year old showing step by step how she inserts and removes her ng tube.

My son can be wilful with me but if the GI orders or prescribes it then my son will usually do it.

My son eats a normal diet now. He's in college so there is certain to be an amount of junk food and such. Since he is asymptomatic it's really hard to determine what food stuffs if any give him any trouble.

If SCD hasn't been enough to induce remission that doesn't mean you have to give it up you can do it as well as meds. Of course, if the med works quickly and things normalize it may be even harder to get a teen to follow a strict diet.

Hugs. Teens and chronic illness can be hard. It's when they are supposed to be striving for independence yet their decision making skills often only incorporate the here and now not looking to far into the future. Even in the best of times it can be difficult.
 
A

alchemy

@Rrahman
I read this whole thread and it's inspiring to read that your thinking is so similar to me. I got a bad diagnosis when i was 24 and my x-rays got swapped by another one (outside of US), who had TB and I had to go thru some high doses of three antibiotics unnecessarily for a month. When I stopped the antibiotics, I got a huge episode of D and it always resolves after taking Flagyl. I used to take Flagyl 3-4 times a year for couple of years and then I moved here to US and it subsided. (I have thought that some infection that was recurrent was resolved in US..) Anyway, fast forward to 10 yrs from then, I got hyperthyroid and now over last three years my terminal ileum has shown inflammation. Last was a capsule endoscopy but in 2013 the Biopsies did not show crohn's. So my doctor said that I could eat everything. Probably a mistake because i could have taken care a lot in last 3 years. Now the capsule endoscopy came back with erosions and have appointment with my gastro next week. sorry for the long story but wanted to make it clear and my long courses with flagyl, since it could be seen a bit different.

You have really done wonderful and, I think, it's not end of the world if she has to take a medication once/twice but can get off of it and get into long-term or life-time remission and there will be only better drugs and a cure in future. instead of waiting, all those suffering, family and friends can commit to dedicate to doing a lot of progress. As many here have indicated, getting the med might be good thing because constant inflammation is not good.

What i want to do is find real people (not fake marketing) that have got off of med by following certain diet, be it scd or something else... or is it too hard to follow something like scd.. I believe, if a diet really works, it'd start showing improvement within couple weeks and it should gradually improve from there.

There are a lot of conflicting research and information; so it's never easy. and along with that there is physical suffering and it takes a mental toll at times. I am personally going through an episode right now - my symptoms are having the feeling of going to loo all the time (tenesmus?) and feel heavy on upper stomach after eating. i have been experimenting with SCD and other foods at this time.
Things like plantain and high fibre are illegal in SCD but other claims it to be helpful; specially dietary plant fiber and cruciferous (broccoli etc) diet to be very helpful
http://nutritionfacts.org/video/prebiotics-tending-our-inner-garden/
 
A

alchemy

@Rrahman
Have you (Or anyone here) looked at this book
Inflammatory Bowel Disease: The essential guide to controlling Crohn's Disease, Colitis and Other IBDs ??
 
C

crohnsinct

Well-known member
You are doing nothing wrong! The disease will do what it wants regardless of diet or meds. There are patients that try Remicade and even that doesn't work for them. It is nothing you are doing ir not doing.

That said, it is the very rare person who can totally control this disease with diet. It has nothing to do with them but rather their body. There are no studies that prove scd can induce or maintain remission and very few docs will even prescribe it.

The trick is to know when to say when. We have been fighting this stupid disease for a little over a year with my younger one and just the other day waived the white flag and decided to step up to remicade. She has relatively mild disease but it just doesn't respond to methotrexate or diet. As I learned with my older one under controlled disease can be very dangerous. She had the disease for about two years but we didn't know it until her first big flare which landed her in icu. The disease was silently doing its damage all along. So with my younger one we are acting before it has a chance to do the same.
 
R

Rrahman

It's heartbreaking a kid has to go through so much! It worked for her; that's the greatest comfort. We , parents have to do whatever is necessary. Thank you so much for the info.
Maya142 said:
Believe me, if a negative attitude caused diarrhea, we would be in big trouble ;)! My daughter really, really, REALLY resisted a liquid diet. She hated Neocate but could not tolerate any of the other, more palatable formulas (Ensure, Boost, even Peptamen Jr). We had to eventually go to a feeding tube and she was SO against that. She refused it for so long that her weight just kept dropping lower and lower.

Finally her GI absolutely insisted and M felt so awful - she was so malnourished and had NO energy to do anything, and so she finally agreed to let them admit her. She absolutely HATED that feeding tube! But she did keep it in, mostly because we had exhausted all our other options.

Once she gained weight and started feel better, and she became very glad and grateful for the tube. She could not believe how good she felt when she finally started getting some good nutrition!

She started out with an NG tube (which she inserted and removed by herself), then an NJ tube and now has a more permanent GJ tube in her belly.

Your daughter is probably quite sick of all this and is also probably not feeling well since her Crohn's is not under control. Stomach pain, fatigue, nausea and generally just feeling unwell usually equal one cranky kiddo! And then you add in the regular teenage hormones ;).

It's important to remember that Crohn's isn't anyone's fault - it's not your fault and it's not her fault. It just is what it is. Sometimes it responds to diet and sometimes it doesn't. Sometimes kids do great on just one med and sometimes kids need a combination of meds. It's a nasty, sneaky disease but it can be controlled.

I will tag some parents who have kids who have done really well on Remicade -- crohnsinct, Mehita and Jmrogers4.
Click to expand...
 
R

Rrahman

We are considering putting our daughter on Remicade. We can only hope it'll work for her. We'll continue SCD. Probably a combination of med and diet will do the trick. She is doing better now. Will go to school tomorrow after 5 days of absence.
All the best with your daughters. Keep us posted.
crohnsinct said:
You are doing nothing wrong! The disease will do what it wants regardless of diet or meds. There are patients that try Remicade and even that doesn't work for them. It is nothing you are doing ir not doing.

That said, it is the very rare person who can totally control this disease with diet. It has nothing to do with them but rather their body. There are no studies that prove scd can induce or maintain remission and very few docs will even prescribe it.

The trick is to know when to say when. We have been fighting this stupid disease for a little over a year with my younger one and just the other day waived the white flag and decided to step up to remicade. She has relatively mild disease but it just doesn't respond to methotrexate or diet. As I learned with my older one under controlled disease can be very dangerous. She had the disease for about two years but we didn't know it until her first big flare which landed her in icu. The disease was silently doing its damage all along. So with my younger one we are acting before it has a chance to do the same.
Click to expand...
 
R

Rrahman

OK, I'm not alone.
We haven't watched the video of ng tube feeding but we'll do so. Thanks.
Even if we put her on med we'll continue SCD. Can't harm.
She is feeling much better now after 5 days on Flagyl and will go to school tomorrow.
Kids and logic don't go together.
All the best with your son and
thanks again for sharing.
Clash said:
It wasn't really a choice to cooperate for my son to use a nasogastric tube to take in formula over night. He was under weight and scheduled to have surgery. He could either insert the tube an take formula overnight then remove the nasogastric tube each morning or he would be admitted to the hospital and given EEN or TPN.

Has she watched you tube videos of kids doing EEN with a nasogastric tube? There's a great one of an 8 or 9 year old showing step by step how she inserts and removes her ng tube.

My son can be wilful with me but if the GI orders or prescribes it then my son will usually do it.

My son eats a normal diet now. He's in college so there is certain to be an amount of junk food and such. Since he is asymptomatic it's really hard to determine what food stuffs if any give him any trouble.

If SCD hasn't been enough to induce remission that doesn't mean you have to give it up you can do it as well as meds. Of course, if the med works quickly and things normalize it may be even harder to get a teen to follow a strict diet.

Hugs. Teens and chronic illness can be hard. It's when they are supposed to be striving for independence yet their decision making skills often only incorporate the here and now not looking to far into the future. Even in the best of times it can be difficult.
Click to expand...
 
R

Rrahman

That's devastating that you had to take all those unnecessary meds. When docs make such mistakes we have to pay dearly.
Thank you for being so encouraging and supportive. I guess you're right: putting my daughter on med won't be the end of the world. She might get off it also. It is really hard staying on SCD and preparing school lunch is an everlasting challenge! But she'll stay on it for as long as she needs.
I believe we have the book Inflammatory Bowel Disease That's the first book we bought after her diagnosis. Breaking the Vicious Cycle is another good one.
Good luck with your doctor's appointment.
alchemy said:
@Rrahman
I read this whole thread and it's inspiring to read that your thinking is so similar to me. I got a bad diagnosis when i was 24 and my x-rays got swapped by another one (outside of US), who had TB and I had to go thru some high doses of three antibiotics unnecessarily for a month. When I stopped the antibiotics, I got a huge episode of D and it always resolves after taking Flagyl. I used to take Flagyl 3-4 times a year for couple of years and then I moved here to US and it subsided. (I have thought that some infection that was recurrent was resolved in US..) Anyway, fast forward to 10 yrs from then, I got hyperthyroid and now over last three years my terminal ileum has shown inflammation. Last was a capsule endoscopy but in 2013 the Biopsies did not show crohn's. So my doctor said that I could eat everything. Probably a mistake because i could have taken care a lot in last 3 years. Now the capsule endoscopy came back with erosions and have appointment with my gastro next week. sorry for the long story but wanted to make it clear and my long courses with flagyl, since it could be seen a bit different.

You have really done wonderful and, I think, it's not end of the world if she has to take a medication once/twice but can get off of it and get into long-term or life-time remission and there will be only better drugs and a cure in future. instead of waiting, all those suffering, family and friends can commit to dedicate to doing a lot of progress. As many here have indicated, getting the med might be good thing because constant inflammation is not good.

What i want to do is find real people (not fake marketing) that have got off of med by following certain diet, be it scd or something else... or is it too hard to follow something like scd.. I believe, if a diet really works, it'd start showing improvement within couple weeks and it should gradually improve from there.

There are a lot of conflicting research and information; so it's never easy. and along with that there is physical suffering and it takes a mental toll at times. I am personally going through an episode right now - my symptoms are having the feeling of going to loo all the time (tenesmus?) and feel heavy on upper stomach after eating. i have been experimenting with SCD and other foods at this time.
Things like plantain and high fibre are illegal in SCD but other claims it to be helpful; specially dietary plant fiber and cruciferous (broccoli etc) diet to be very helpful
http://nutritionfacts.org/video/prebiotics-tending-our-inner-garden/
Click to expand...
 
Jmrogers4

Jmrogers4

My son was on a combination SCD diet and LDN for us the diet was just too restricting as he was already severely underweight and what he would eat of legal food just wasn't enough. Symptom wise he felt pretty good but then he fairly asymptomatic so it's hard to tell. His biggest symptoms have been lack of growth and weight gain.
He has been on remicade for the last 2 1/2 years and doing fantastic so much so that lack of growth is no longer a reliable indicator.
 
R

Rrahman

Did you do med and SCD together for your oldest daughter? How long was she on med? I'm scared to death when I read about the side effects of Remicade. I know it doesn't mean every body will have the same side effects. But it's scary anyway. It's good to know Remicade works for so many.
Sudsy said:
My older daughter was on strict SCD for five years. It was GREAT for her and she was able to be totally off meds for well over two years (with frequent checking on labs, etc). While it was quite hard to follow the diet so strictly (birthday parties were extremely challenging, as she was between 8-13 when she followed SCD), it was truly amazing to see her so healthy.

When she was 13 she decided she wanted to be able to go for pizza and ice cream with her friends, and slowly transitioned off. I kept making SCD yogurt for the next few years (the one thing I recommend if people are going to try only one SCD thing).

Are you on the Pecanbread Yahoo Group? Very helpful. Also, since everyone there is using SCD you will only get positive feedback about it :)

Good luck figuring it out and may all our kids soon now complete good health.
Click to expand...
 
A

alchemy

Rrahman said:
That's devastating that you had to take all those unnecessary meds. When docs make such mistakes we have to pay dearly.
Thank you for being so encouraging and supportive. I guess you're right: putting my daughter on med won't be the end of the world. She might get off it also. It is really hard staying on SCD and preparing school lunch is an everlasting challenge! But she'll stay on it for as long as she needs.
I believe we have the book Inflammatory Bowel Disease That's the first book we bought after her diagnosis. Breaking the Vicious Cycle is another good one.
Good luck with your doctor's appointment.
Click to expand...
These issues can get very depressing - takes away the drive from life where we can't even eat freely.. i guess more with adults..
Talking to you and others in similar position feels that we are together and gives a new light and fresh hope..


I tried for an early appointment and was able to get squeezed in today. My Gastro is very cooperative and laid down the options since in my case we have been seeing inflammations last three times but the last colonoscopy biopsies in 2013 came back negative. This recent one is a capsule endoscopy and he is scratching his head seeing the inflammations in terminal ileum.

One option he laid out is to take the Steroids and see if that subsides the symptoms and if it happens next time then try with some immunosuppressants.. He said the steroids are local steroids and should not have much side-effects..
Other options are obviously to have colonoscopy and get biopsies.
For today, we settled with bunch of lab tests - CrP, ESR, Sed Rate and stool tests... to see what comes out from all these inflammation markers...

@Rrahman -- IMP
I read most of the IBD book by John Hunter in one sitting. Unfortunately he has retired but this in Important based on my understanding...
He has got 80-90% success from diet while the success from meds is 60-70%
I believe this is huge because of a gastro talking about the experience from his practice..

Here is what he says (if i understood correctly) ---
The diet protocol only works when you are in a flare up - and you shouldn't take any medication during that time, because you won't know which diet is causing problem and which ones are not...
You go with the elemental liquid diet for 2-3 weeks (sometimes can be longer) and then you add one by one food items and see which ones are working. Then strictly stay on this diet for 2-3 years.

He says if you can stay on this diet for five years then you can cure CD.

Challenge is getting on the liquid diet for the initial 2-3 weeks and gutting it out with the elimination diet for 2 months. But I believe with right support system it can be made easier...
 
my little penguin

my little penguin

Moderator
Staff member
Alchemy
I am sorry for your struggles but there is no cure for crohns period
Diet or otherwise ( meds)
It is a disease that waxes and wanes
 
R

Rrahman

Hi Alchemy,
Sorry to hear about your test/lab results. Talking to someone like me will always lead you to SCD, Specific Carbohydrate Diet that is grain free, sugar free, and lactose free. It won't hurt trying a diet, no side effects other than cravings for your favorite foods. One needs to stay on the diet for 2 or more years. The rule of thumb is to stay on the diet for one year after the last flare. Then gradually reintroduce the "forbidden" food one at a time.
 
A

alchemy

my little penguin said:
Alchemy
I am sorry for your struggles but there is no cure for crohns period
Diet or otherwise ( meds)
It is a disease that waxes and wanes
Click to expand...
Thanks MLP.
Maybe I will reach your conclusion but an actual Gastroenterologist who has treated patients for decades and claiming it must have some substance. This does not feel like what some of the functional doctors are claiming about leaky gut etc...

If someone does not get inflammation in the gut being on a diet then I would consider it that person have cured it.
Maybe not in traditional medical sense of taking some medications and curing it but if you can stop the inflammation going then it means your gut is fine and your immune system is not attacking and you should be asymptomatic.

Just my thoughts.. maybe i am wrong..
 
A

alchemy

Rrahman said:
Hi Alchemy,
Sorry to hear about your test/lab results. Talking to someone like me will always lead you to SCD, Specific Carbohydrate Diet that is grain free, sugar free, and lactose free. It won't hurt trying a diet, no side effects other than cravings for your favorite foods. One needs to stay on the diet for 2 or more years. The rule of thumb is to stay on the diet for one year after the last flare. Then gradually reintroduce the "forbidden" food one at a time.
Click to expand...
Yeah the craving can be hard to manage at times but i am not hearing from anyone that SCD works. I have not read the book Breaking the vicious cycle. But have heard many people saying on the forums that SCD did not work for them.
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
alchemy diet and medications can help put someone into clinical remission which means that there's no evidence of inflammation. If the diet or medication were to stop then it's very possible for the inflammation to return which means that the disease itself was never actually cured. I've been in remission for 17 years but I would never say that I'm "cured" because I had a resection and take medication. Many members have also had a resection yet for many the inflammation returns which shows that a resection will not cure the disease nor does any current treatment option for Crohn's disease. Unfortunately there is no cure at this time.
 
L

Lizette

Hi, my son was taking Flagyl and cipro for the past 5 years, due to abscesses in the anal area. He started having diarrhea a year and a half, dr put him on steroids and Pentasa, the steroids 2 months, after that he was with the Pentasa and the Flagyl and cipro every 6 months, last November he starting having the same problem diarrhea and blood, another round of steroids, he was check to see if he had c-diff test came negative both times 2014, and 2015. Last month he started the same, dr decide to do colonoscopy. Results, all colon swollen (colitis) dr suspected he had c-did test came positive , he is on different antibiotic due to his c-diff, teh cause for taking Flagyl and cipro. . He might had the c-diff for long time, since he was diagnose at age 6 he had never had any diarrhea or nor pain. Just fissures in the anal area.
Current medications Pentasa and vancomycin, vitamin D, iron and centrum vitamins plus probiotic.
 
R

Rrahman

Light bulb!! My daughter eats a banana as a bed time snack. I can spread almond butter and maybe a little honey. We are also considering AID. I would like to add kefir to her diet since she takes antibiotics (Flagyl) during flare.

Thanks.:)
Lady Organic said:
I gained a lot of weight eating a lot of almond butter. This is delicious and easy to incorporate in the diet. I eat it every morning heavily spread on a banana with blueberries or other berries. Expensive though.
Click to expand...
 
R

Rrahman

Being on SCD is sticking to SCD only. and saying no to all other foods. That we didn't do last year. This year is a different story. We'll see what happens. Hoping for the best.
alchemy said:
Yeah the craving can be hard to manage at times but i am not hearing from anyone that SCD works. I have not read the book Breaking the vicious cycle. But have heard many people saying on the forums that SCD did not work for them.
Click to expand...
 
R

Rrahman

My daughter is also put on Flagyl during a flare. Each time it's a moth long antibiotic (Flagyl) course. We give her probiotic food such as yogurt (I make SCD yogurt) and aged cheese. She also takes D3, Cod liver oil, and the probiotic: GI Pro-Health- Scdophylus.
Lizette said:
Hi, my son was taking Flagyl and cipro for the past 5 years, due to abscesses in the anal area. He started having diarrhea a year and a half, dr put him on steroids and Pentasa, the steroids 2 months, after that he was with the Pentasa and the Flagyl and cipro every 6 months, last November he starting having the same problem diarrhea and blood, another round of steroids, he was check to see if he had c-diff test came negative both times 2014, and 2015. Last month he started the same, dr decide to do colonoscopy. Results, all colon swollen (colitis) dr suspected he had c-did test came positive , he is on different antibiotic due to his c-diff, teh cause for taking Flagyl and cipro. . He might had the c-diff for long time, since he was diagnose at age 6 he had never had any diarrhea or nor pain. Just fissures in the anal area.
Current medications Pentasa and vancomycin, vitamin D, iron and centrum vitamins plus probiotic.
Click to expand...
 
Optimistic

Optimistic

My son had clean scopes and biopsies after months of prednisone, EEN, and now a long term mix of militantly strict SCD and about 30% EN. He is monitored quarterly with labs and FCP and last year had 2 scopes. Honestly sometimes the idea of a med seems easier!!
 
R

Rrahman

So glad to hear about your son. :)
Kep us posted.
Optimistic said:
My son had clean scopes and biopsies after months of prednisone, EEN, and now a long term mix of militantly strict SCD and about 30% EN. He is monitored quarterly with labs and FCP and last year had 2 scopes. Honestly sometimes the idea of a med seems easier!!
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A

alchemy

Jennifer said:
alchemy diet and medications can help put someone into clinical remission which means that there's no evidence of inflammation. If the diet or medication were to stop then it's very possible for the inflammation to return which means that the disease itself was never actually cured. I've been in remission for 17 years but I would never say that I'm "cured" because I had a resection and take medication. Many members have also had a resection yet for many the inflammation returns which shows that a resection will not cure the disease nor does any current treatment option for Crohn's disease. Unfortunately there is no cure at this time.
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Thanks Jennifer. I fully understand from what all of you are saying and I understand that there is no cure with the current drug treatments. I do not hijack this thread on SCD :)

I would still highly recommend everyone to look at this:
http://www.crohns.org.uk/crohns_disease/nutritional_therapy/which-dietary-treatment-should-i-choose
it's not easy to follow and do this.. and it's not very practical for many people too. anyway, thanks to this thread, I came across it..
 
A

alchemy

Optimistic said:
My son had clean scopes and biopsies after months of prednisone, EEN, and now a long term mix of militantly strict SCD and about 30% EN. He is monitored quarterly with labs and FCP and last year had 2 scopes. Honestly sometimes the idea of a med seems easier!!
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@Optimistic,

i have been contemplating of nutritional therapy and, yes, going on the med route seems many many times easier....

The data i am seeing is that if one can stick to the diet that is not giving any inflammation (I am thinking, with limited knowledge that clean scope and biopsies are best indicator; there could be other indicators) for 5 years, then you are going to be good on long haul.
I believe that this route is definitely much much harder but will provide your Son many benefits from all around, especially very important for someone so so young.

i have a question; how long it has been stopping prednisone and is your Son taking everything that are allowed in SCD? or taking a subset of it and eliminating the foods that are not agreeing?
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
yes the IBD-AID diet encourages the consumption of both Prebiotics fibers (inuline chicoree root, banana, onions, garlic, jerusalem artchockes, etc..) and probiotics (fermented veggies, saukrauts, kefir, etc...)
I consume a lot of these.

strawberries or blueberries are very good on top of the almond butter on the banana, I never get bored of eating it :)
 
Optimistic

Optimistic

alchemy,
He is 1.5 years off prednisone. He doesn't eat all of SCD. He eats what he likes, tons of protein and fruit, and then what the SCD dietician says he needs for a balanced diet. He eats nothing that we know of that isn't SCD.

He is under the care of GIs at two different children's hospitals. I believe one group has patients 4-5 years on SCD. From what I understand compliance is a huge problem for many who try it and I get that! They do not have patients cycle off, at least that I know of. I've heard of a handful of Drs outside the US (not just UK and Auatralia) who do have patients add foods back but I don't know the details.
 
Mehita

Mehita

As Maya said, my son is a Remicade success story, but it wasn't easy getting here. I was like you and afraid of the meds, so I fought them. Unfortunately, my fear kept him from getting better sooner. We avoided the meds to the point where he needed to have a section of his small bowel removed due to a stricture. Had I agreed to meds sooner, we could have prevented and avoided this surgery. Please do not let your fear prevent your daughter from getting better. It's taken me a very long time to forgive myself.

That being said, he's been on Pentasa (not strong enough), pred, Azathioprine (no effect), and finally, after yet another hospitalization with an abscess and fistula, was started on Remicade. I will go so far as to say it worked instantly. During the infusion you could just see him come alive and, the best part, he wanted to eat. This kind of response is not the norm, but in his case it was the beginning of becoming healthy again. By his second infusion two weeks later, all his labs were normal, even inflammation markers. Two months later, his GI declared him in clinical remission and he's been there for almost three years now. He's living a completely normal teenage life and only thinks about his Crohn's on infusion days.

He doesn't mind his infusions. It's a time to read, play video games, skip school, and just chill out. We both wish we would have started him on Remicade from the start and skipped all those bad years in between. It is what it is though and I can't turn back the clock. I just encourage you to stay open minded and not let fear keep your daughter from getting the treatment she may need.

Good luck to you...
 
Optimistic

Optimistic

Mehita, I love the part where you said "he is living a normal teenaged life". 3 years of remission is fabulos! What a great success story even though getting there was ugly.

Do you recall at what point after he started Remicade that he had clean scopes and biopsies? My guess is pretty soon since he reacted positively right away?
 
Mehita

Mehita

Optimistic said:
Mehita, I love the part where you said "he is living a normal teenaged life". 3 years of remission is fabulos! What a great success story even though getting there was ugly.

Do you recall at what point after he started Remicade that he had clean scopes and biopsies? My guess is pretty soon since he reacted positively right away?
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Actually, we never followed up with scopes and biopsies until last month, which was two plus years later. His GI is very conservative and didn't feel the need until now for routine scopes, which were squeaky clean. I know some GI's do them more frequently, but his doesn't and I'm ok with that since his disease has always been in the small bowel, unreachable.
 
Jmrogers4

Jmrogers4

Our GI is the same as Mehita, once every 3 years for check up scopes but doesn't do them before unless there is a need maybe even not necessarily scopes but some kind of imagining for us last scopes were just over 3 years ago and looked fantastic however MRE nearly a year later showed inflammation in small intestine so will be following up with MRE as his GI said probably sometime between Aug-Dec and scopes "before he leaves for college" he will be a senior next year.
We had a similar experience as Mehita's son with first infusion you could see the color come back into his face and about 1/2 way through he told me he was starving and proceeded to devour a double cheeseburger meal after the infusion. This from a kid who I could barely get to eat a couple of bites of anything at a time. He was 5'1" and 85 pounds and losing weight at the time of his first infusion. He has not stopped eating since. That was January 2014 and know he is 5'11" and 136 pounds.
I let him eat whatever he wants for the most part (we still stay away from popcorn and seeds). Since he has been in remission doesn't seem to have any foods that give him trouble. I try not to worry too much I provide healthy foods at home but he's a teenage boy so there is a fair amount of junk food eaten when out with friends or coming home after baseball games.
 
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