Natural Treatments for Crohn's

[danneka]

Hi. I'm the mother of a 12yr old daughter who has Crohn's. She was diagnosed in March and was immediately started on a three month course of exclusive enteral feeding with Modulen formula. We chose this therapy as we were extremely reluctant to go with any of the meds suggested after we researched them and read blogs which detailed the many terrible side effects.
The ng-tube feeding has worked like a charm in achieving remission for our daughter. In three months she has gained 14lbs, grown almost 3cm, and the inflammatory marker CRP in her bloodwork went from 19 to 0.6!!! She looks healthy and has more energy than she has had in a long time. In addition to the Modulen formula, she also consumed 1 cup of homemade bone broth every day along with a Vitamin D and Multivitamin as well as an iron pill supplement, (Proferrin 11mg).
Now that we are coming to the end of her ng-tube feeds (3months), her team at the hospital is still wanting us to put her Remicade, Humira, or Azathioprine.
We are planning instead...to transition to solid foods very carefully with the help of Crohn's diet/cookbooks, as well as use natural anti-inflammatory supplements along with lifestyle changes (she's starting yoga for teens today).
Based on her recovery using the ng-tube diet therapy, I am hopeful that we can maintain her remission without drugs. Is there ANYONE out there using diet, lifestyle wellness tools and natural supplements to manage their disease successfully??? I want to hear from you!! Please advise and comment with any helpful hints...they would be much appreciated.

 

[Mattie]

Yes, I have always treated my Crohns with diet. I was a patient of one of the foremost authorities on the use of diet to treat Crohns - Professor John Hunter of Addenbrokes Hospital in Cambridge. Unfortunately the Prof has now retired but you can buy his book on the subject from Amazon:

http://www.amazon.co.uk/Inflammator...qid=1432568479&sr=1-4&keywords=Dr+John+hunter

You will need to work initially with a dietician who is familiar with the Lofflex diet which Professor Hunter invented. You can find lots of info on this on the web. You will also need to use elemental drinks during the time you are reintroducing foods. And take the reintroduction phase very slowly, keeping a diary of symptoms as you go. This system works, it isn't easy because once testing of foods is complete and you have identified those to which your daughter is intolerant, she will have to avoid these in all their forms. It's not something you can pick up and put down, but a long term process, but definitely worth doing.

 

[Grotbags]

Just a heads up on the iron supplement, I had been taking them for years, but was always convinced they made me ill, fast forward a few years and a new consultantant , he was horrified I was taking iron pills, as they irritate the gut, he put me onto iron infusions.

 

[24601]

I too was a patient of Professor John Hunter of Addenbrokes Hospital in Cambridge.

Although EEN worked well for me, neither of his diet treatments - elimination or LOFFLEX - helped control my disease at all despite working closely with his team of dieticians.

If I could go back in time, I would tell myself not to hold on so tightly to the belief that diet could treat Crohn's without medication - which I would have found hard to accept because I really really wanted it to be true.

And I used the fact that I experienced such benefit from EEN and had some symptomatic improvement on limiting my diet as proof that dietary treatments would benefit my disease - and wrongly extrapolated this to mean that dietary treatments could alone be enough to treat my disease if I could only find the right diet. But diets had nowhere near enough effect on my inflammation. Reducing symptoms is not equivalent to controlling inflammation and inflammation is what does the damage.

While I persisted with the dietary treatment, I lost time, I lost ground and ultimately I lost vital small bowel.

I now have 90 cm of small bowel left and am undergoing a stem cell transplant, in the hope that I may avoid a small bowel transplant which has a 50% 5 year survival rate. That stat makes the risks from medications like azathioprine or Remicade look trivial.

I would caution very strongly against even attempting to use diet alone to control your daughter's Crohn's, as tempting as it may be. I know the risks of medication are scary but uncontrolled or undercontrolled Crohn's disease is worse.

Diet is great as an adjunctive therapy, I'm not denying its importance but diet, supplements and lifestyle changes simply can't control Crohn's for the vast majority of people and I can only say that I would not send my child down the path I followed, the stakes are too high.

I believe the very best course of action for anyone with Crohn's is to do whatever it takes to achieve mucosal healing as this has been shown to give the best longterm prognosis.

And you've done the very best thing that you can so far by doing a 12 week course of EEN as EEN is better for achieving mucosal healing than steroids, as well as avoiding the side effects. The best maintenance therapy for promoting mucosal healing is Remicade.

If you do decide to use dietary treatment, then I would suggest doing 50% enteral nutrition alongside the diet you choose. Partial enteral nutrition wasn't enough to control my disease but statistically it does improve your chances of staying in remission.

 

[wildbill_52280]

Read more about bone broth, bones accumulate lead in them, very unsafe.

Your best option is to start with diet and drugs, then the realistic goal would be to see slowly reduce the medications and see how low you can get them before symptoms reappear, because you are unlikely to do any better job of suppressing the disease without drugs. diet alone typically is never enough to suppress the symptoms 100%.

 

[ncman]

I too am treating my CD using diet, using the same method as outlined by Mattie above, and am currently reintroducing foods. It is a long process.

24601 - Could you expand more on your journey with EEN? Why didn't the diet work in your case?

 

[24601]

EEN worked to get inflammation fairly well under control but not entirely and it seems that I needed to stay on exclusive enteral nutrition the whole time - partial enteral nutrition wasn't enough.

My inflammation levels increased on the LOFFLEX diet and as soon as I tried to reintroduce foods using the elimination diet after EEN.

 

[ncman]

How were they checking your inflammation levels? CRP? Calpro? How much did it rise by?

What explanation did the team give as to why your inflammation was rising i.e. why wasn't the diet working?

 

[24601]

Faecal calprotectin tests were not used at that time (I started seeing Prof Hunter in early 1998 and was treated at Addenbrookes until 2004) so it was blood tests that were routinely done but my CRP made it clear that my inflammation was not under control. I'd have to go way back through records to check numbers so you don't mind if I don't do you? Small bowel follow throughs were done every year - until Professor Hunter left, then they stopped doing any imaging at all.

The explanation given to me by Professor Hunter was that diet does not work for everyone.

 

[ncman]

Don't worry about digging out old records!

That's so strange. So as soon as you started eating easily digestable stuff like rice or chicken, how were your symptoms? Were you symptomatically better on diet even though there was inflammation in the background?

Do you have any further theories on why things didn't work? Did you have other complications at the time?

It's just that I don't know of many people that've done the diet route and just want to be aware of the unknown pitfalls that you may have come across over the years.

What was the next treatment you tried after?

 

[Justanothercp]

Danneka,
I applaud your efforts to control things with diet, but in the same breath, please be open to the idea that it may not be possible and don't fill like you failed if it doesn't work. I tried and it didn't work, ended up having a resection and currently take Remicade, Lialda, Omeprazole and Budesonide along with Paleo diet to keep symptoms at bay.

 

[24601]

Hi ncman,

My symptoms did increase and the inflammation increased (as measured by CRP) even on a very limited diet. The first three foods I inroduced were chicken and rice and banana and I lived off those for longer than I care to remember! I did, however, experience improved symptoms on that very limited diet compared with an unrestricted diet but sadly an improvement in symptoms is nowhere near deep, stable remission.

I did meet others Crohn's patients in the waiting room/corridor (I think we all spent hours and hours waiting to see John Hunter!) who "failed" to get past the first few foods. And it does feel like a failure and the temptation is to keep trying. I think one of the most important things to recognize when taking this dietary approach is that just like any treatment - prednisone, EEN, Remicade, absolutely any treatment - that not everyone responds. Even prednisone and EEN have an approximately 20-30% failure rate in terms of not being able to induce remission.

The important thing to do whatever treatment you try is to monitor inflammation levels closely with bloods, fecal calprotectin and scopes and imaging. Ultimately the scopes and other imaging are very important because bloods and even fecal calprotectin don't always reflect disease actvity well, even if they have previously.

Often you have to be open to using more than one approach to treating Crohn's - for example diet plus meds.

And sometimes you need one treatment (or set of treatments) for the disease activity and other treatments for symptoms. For me in addition to the treatments for my Crohn's I get a lot of symptomatic relief from SCD - but SCD alone couldn't control my disease. I really very strongly wanted to believe that diet could control my Crohn's because I did experience symptomatic improvement with dietary restrictions and I had a good reduction of inflammatory markers with EEN. But that didn't translate into being able to find an equivalent anti-inflammatory diet made up of normal foods.

Just to bring it back to the OP here, the reason I'm particularly concerned about using diet alone to attempt to treat Crohn's in this case is the age of danneka's daughter. At 12 there is still the possibility of growth retardation or failure as well as the increased likelihood of severe or complicated disease (studies have shows this is associated with diagnosis between 6 and 17)

I hope the diet continues to work well for you ncman but if you do need another treatment there are so many more now than there were when I was unsuccessful with diet. Try not to worry, just monitor disease activity (or hopefully lack of activity!) and know that there are lots of other treatments out there - and that the risks of these medications are actually very low and that while some people have side effects, many don't. I've had no side effects at all from methotrexate, Remicade or Humira!

 

[InstantCoffee]

Hi ncman,

My symptoms did increase and the inflammation increased (as measured by CRP) even on a very limited diet. The first three foods I inroduced were chicken and rice and banana and I lived off those for longer than I care to remember! I did, however, experience improved symptoms on that very limited diet compared with an unrestricted diet but sadly an improvement in symptoms is nowhere near deep, stable remission.

I did meet others Crohn's patients in the waiting room/corridor (I think we all spent hours and hours waiting to see John Hunter!) who "failed" to get past the first few foods. And it does feel like a failure and the temptation is to keep trying. I think one of the most important things to recognize when taking this dietary approach is that just like any treatment - prednisone, EEN, Remicade, absolutely any treatment - that not everyone responds. Even prednisone and EEN have an approximately 20-30% failure rate in terms of not being able to induce remission.

The important thing to do whatever treatment you try is to monitor inflammation levels closely with bloods, fecal calprotectin and scopes and imaging. Ultimately the scopes and other imaging are very important because bloods and even fecal calprotectin don't always reflect disease actvity well, even if they have previously.

Often you have to be open to using more than one approach to treating Crohn's - for example diet plus meds.

And sometimes you need one treatment (or set of treatments) for the disease activity and other treatments for symptoms. For me in addition to the treatments for my Crohn's I get a lot of symptomatic relief from SCD - but SCD alone couldn't control my disease. I really very strongly wanted to believe that diet could control my Crohn's because I did experience symptomatic improvement with dietary restrictions and I had a good reduction of inflammatory markers with EEN. But that didn't translate into being able to find an equivalent anti-inflammatory diet made up of normal foods.

Just to bring it back to the OP here, the reason I'm particularly concerned about using diet alone to attempt to treat Crohn's in this case is the age of danneka's daughter. At 12 there is still the possibility of growth retardation or failure as well as the increased likelihood of severe or complicated disease (studies have shows this is associated with diagnosis between 6 and 17)

I hope the diet continues to work well for you ncman but if you do need another treatment there are so many more now than there were when I was unsuccessful with diet. Try not to worry, just monitor disease activity (or hopefully lack of activity!) and know that there are lots of other treatments out there - and that the risks of these medications are actually very low and that while some people have side effects, many don't. I've had no side effects at all from methotrexate, Remicade or Humira!

When you say that you have improvement of symptoms but it wasn't enough, to what extent were you improved? How were your symptoms on just diet?

I ask because I've been treating with diet for a long time and it's always a worry for me when I hear people say that there could be damage done despite a reduction in symptoms. It seems to me though if you have / had severe enough inflammation to cause lasting damage there would have to be -some- symptom or clue that it was happening.

Inflammation has to have an effect on your daily well being, so I'm guessing you still had noticeable Crohn's symptoms?

I strongly believe I can become asymptomatic through diet, because I know foods I can eat and will 100% not have symptoms, however the idea that no symptoms doesn't mean no activity is a bit scary. Also the diet I know is safe is not healthy, so I'm always trying new things and thus I'm rarely 100% symptom free.

 

[ncman]

Thanks 24601.

I think my only reason for trying the diet is that next I'd be onto the biologics, and at some stage, as you build antibodies to them, they would stop working. So that really only leaves you back at square one with diet.

 

[24601]

ncman, I understand that thought process (been there, done that!) but biologics do have their place, even if you can only be on them for a limited time and for some people that limited time is long - there are people who have been on Remicade for 10+ years now.

And with the number of biologics available you can move from Remicade to Humira to Cimzia to Entyvio and use them as stepping stones to get you to that point in the future when there will be even more treatments available.

What I'm saying is, if you need them, don't be afraid of them and don't think of the limited timescale being a reason not to try - it might not happen for you for a long time and when it does there should be new things to try. Much better to be in the position of having maintained enough healthy bowel for a long and healthy life to make use of the even better treatments when they become available. Basically don't be me

InstantCoffee -
my pain levels were reduced on a restricted diet but I still had pain. Pain was always my main symptom and one I'd lived with for so many years that I had learnt to ignore it to some extent. When I was diagnosed with Crohn's at 17 I was shocked that everyone else didn't have a stomach ache all the time, I just hadn't realised!

I think my tolerance for pain made it hard for me to accept that I needed to be aiming to be without pain - that and doctors who said "you have Crohn's, you should expect to be in pain" - when of course what we need to aim for is deep clinical, biochemical and endoscopic remission.

I have had ongoing inflammation that has done permanent damage while not really feeling like I had much pain at all - nothing that wasn't well in the background for me. I never had diarrhea and I had no blood or fevers or joint pain. Just some fatigue but that was pretty much a constant and hard to measure and be objective about. So I wouldn't argue that in my case there was no clue at all but it wasn't one even some of my doctors paid any attention to. On their tests, usually CDAI scores, I never scored that high and so they wouldn't really try to do anything about it. I do firmly believe that we need to set our sights much higher in terms of abscence of symptoms and mucosal healing.

I have read of quite a few people - both on the forum and case studies in papers - who have no symptoms at all but present with complications so I think we all have to acknowledge that this is a possibility and be aware that regular monitoring is important. Hopefully this can be a reassurance for you and reduce your concern about this being the case for you.

I think that my concern for you is that, as you say, you are rarely 100% symptom free and that is quite different to being consistently 100% symptom free. I understand your firm belief that diet can help you but I also know where you are coming from when you say that the limited diet that keeps you symptom free is too restrictive and not healthy and therefore you can't stay on it. It seems to me that what you have found is a hypothetical solution to your symptoms (and perhaps inflammation, though only tests can prove that) but if the hypothetical solution isn't practical then I think you need to find a solution that you can actually use - a treatment that you use everyday, otherwise it's like having that bottle of pills sitting in the cabinet and not taking them. It's easy to think we are treating Crohn's with diet but in reality some of us are just experimenting and we need another more reliable treatment right now, while we wait for the complicated interaction of diet and the inflammatory process in our guts and probiotics and the microbiome to be better understood. I think it will be in time.

 

[InstantCoffee]

ncman, I understand that thought process (been there, done that!) but biologics do have their place, even if you can only be on them for a limited time and for some people that limited time is long - there are people who have been on Remicade for 10+ years now.

And with the number of biologics available you can move from Remicade to Humira to Cimzia to Entyvio and use them as stepping stones to get you to that point in the future when there will be even more treatments available.

What I'm saying is, if you need them, don't be afraid of them and don't think of the limited timescale being a reason not to try - it might not happen for you for a long time and when it does there should be new things to try. Much better to be in the position of having maintained enough healthy bowel for a long and healthy life to make use of the even better treatments when they become available. Basically don't be me

InstantCoffee -
my pain levels were reduced on a restricted diet but I still had pain. Pain was always my main symptom and one I'd lived with for so many years that I had learnt to ignore it to some extent. When I was diagnosed with Crohn's at 17 I was shocked that everyone else didn't have a stomach ache all the time, I just hadn't realised!

I think my tolerance for pain made it hard for me to accept that I needed to be aiming to be without pain - that and doctors who said "you have Crohn's, you should expect to be in pain" - when of course what we need to aim for is deep clinical, biochemical and endoscopic remission.

I have had ongoing inflammation that has done permanent damage while not really feeling like I had much pain at all - nothing that wasn't well in the background for me. I never had diarrhea and I had no blood or fevers or joint pain. Just some fatigue but that was pretty much a constant and hard to measure and be objective about. So I wouldn't argue that in my case there was no clue at all but it wasn't one even some of my doctors paid any attention to. On their tests, usually CDAI scores, I never scored that high and so they wouldn't really try to do anything about it. I do firmly believe that we need to set our sights much higher in terms of abscence of symptoms and mucosal healing.

I have read of quite a few people - both on the forum and case studies in papers - who have no symptoms at all but present with complications so I think we all have to acknowledge that this is a possibility and be aware that regular monitoring is important. Hopefully this can be a reassurance for you and reduce your concern about this being the case for you.

I think that my concern for you is that, as you say, you are rarely 100% symptom free and that is quite different to being consistently 100% symptom free. I understand your firm belief that diet can help you but I also know where you are coming from when you say that the limited diet that keeps you symptom free is too restrictive and not healthy and therefore you can't stay on it. It seems to me that what you have found is a hypothetical solution to your symptoms (and perhaps inflammation, though only tests can prove that) but if the hypothetical solution isn't practical then I think you need to find a solution that you can actually use - a treatment that you use everyday, otherwise it's like having that bottle of pills sitting in the cabinet and not taking them. It's easy to think we are treating Crohn's with diet but in reality some of us are just experimenting and we need another more reliable treatment right now, while we wait for the complicated interaction of diet and the inflammatory process in our guts and probiotics and the microbiome to be better understood. I think it will be in time.

Thanks for the reply, when I say I'm not 100% symptom free, I always know it's something I've done and if I ate my 'safe' diet I would be.

The problem is my safe diet is extremely high satiety with almost no carbs and high in fat, it's hard to get all the calories I need. I did it for 2 months and I still lost weight. I felt great, completely symptom free and I was able to tolerate more spices and fiber in my diet when I was done but I lost a lot of weight due to just not being able to force feed myself the diet.

It was pretty much chicken, eggs, tuna and mayo with white rice. I cut all simple sugars and milk out and slowly introduced fruits and vegetables.

It brought about a long period of very tame, very controllable bowel habits. If I stepped out of line and ate something bad the consequences were minimal.

Unfortunately I got careless, I started drinking a lot of orange juice and eating chocolate daily and I believe that it undid everything I gained and my condition has deteriorated again.

I just haven't hit rock bottom enough to go through the two months of strict diet hell that I did before and I'm trying different options this time.

 

[BlueSky]

Hi. I'm the mother of a 12yr old daughter who has Crohn's. She was diagnosed in March and was immediately started on a three month course of exclusive enteral feeding with Modulen formula. We chose this therapy as we were extremely reluctant to go with any of the meds suggested after we researched them and read blogs which detailed the many terrible side effects.
The ng-tube feeding has worked like a charm in achieving remission for our daughter. In three months she has gained 14lbs, grown almost 3cm, and the inflammatory marker CRP in her bloodwork went from 19 to 0.6!!! She looks healthy and has more energy than she has had in a long time. In addition to the Modulen formula, she also consumed 1 cup of homemade bone broth every day along with a Vitamin D and Multivitamin as well as an iron pill supplement, (Proferrin 11mg).
Now that we are coming to the end of her ng-tube feeds (3months), her team at the hospital is still wanting us to put her Remicade, Humira, or Azathioprine.
We are planning instead...to transition to solid foods very carefully with the help of Crohn's diet/cookbooks, as well as use natural anti-inflammatory supplements along with lifestyle changes (she's starting yoga for teens today).
Based on her recovery using the ng-tube diet therapy, I am hopeful that we can maintain her remission without drugs. Is there ANYONE out there using diet, lifestyle wellness tools and natural supplements to manage their disease successfully??? I want to hear from you!! Please advise and comment with any helpful hints...they would be much appreciated.

Congratulations on your daughters remission and courage to make this choice! Coming off NG feeding is a sensitive time for remission. Diet is important for all of us on medication or not because we tend to have difficulty absorbing nutrition. I have three thoughts as you consider your options:

1. Bone Broth.
Home made Bone broth made from meat pasture-raised (chicken) grass-fed (beef) is very healthy. It is extremely nutrient dense, mineral rich, and gut healing. This concept comes from the SCD/Paleo school of nutrition. Getting the bones from such high quality sources isn't easy. Try Wellness Meats if interested.

2. Diet Schools
As you do research into diet you find that there is not a consensus within the alternative health communities about which diet works best. the Lofflex diet, SCD, Paleo, FODMAPS, autoimmune protocol are used by Crohn's patients. I recommend the SCD lifestyle and pecanbread.com websites for the first only because I tried the SCD path and saw improvement but not a cure. The Lofflex diet (white, bland, low-fiber) are designed to stop obstructions.This is often a necessary top priority. However, in my opinion they are not high nutrient diets. What I think is universally recommended by all is a elimination diet and food diary. Another common value is pureed or juiced vegetables.

3.Choice and Responsibility
Your daughter is sick and you want to heal her. An incurable disease with multiple treatments can leave you with an unbearable sense of responsibility as a parent--one that ultimately isn't fare to you. Make your best choices. Crohn's is hills and valleys. Its hard to win every battle.

Let us know what your experience with diet is.

 

[Gutsii]

In my opinion and experience, diet should always be the core of anyone trying to improve their digestive system.

That said, you could try a low dosage of imuran on top of tweaking the diet (as it will take a while to get right).

I had the same approach as you. I did everything possible to get myself healthy and tried med's last.

I would listen to your daughter and see how she feels. If she is ok, keep tweaking the diet and other lifestyle changes. If she isn't ok, try imuran and go from there.

The most important thing is for your daughter to feel good about the whole process. This is going to be mostly a mental fight for her, so whatever can ease her into getting healthy is the best option

Hope that helps, feel free to ask me anything about alternative medicine as well (chinese, homeopathic, eastern vs western etc.)