Natural approach to Crohn's treatment?

[Lindseyw4]

Hoping I'm not opening a can of worms here, but just vm Curtis if anyone else has speculated ways of controlling/treating Crohn's naturally? I keep trying to think of ways to get around meds and interventions and tests--obviously only those that seem unnecessary. And since i have no experience with Crohn's so far, i haven't refused anything.

However, the use of antibiotics and steroids worry me because in the long run it just weakens the immune system more. I noted this in another post, but it seems like the meds used to treat the disease just make a different sickness! On top of that, my son was ordered an MRE early this fall, which he was so traumatized by the thought of an enema that he could not go through with it (we got to laying on the table inside the MRI before he begged me with terror and hopelessness in his eyes not to do this to him, so we left). Next clinic visit the Dr. Says "oh, we don't have to repeat it...It's not that important" which really makes me not trust him nor the treatment! Maybe he just needs a new doc we can trust, or maybe i just don't trust doctors.

Just curious if there is anything anyone ever refuses or questions routinely.

 

[Sascot]

It does sound like you would be happier with a different doctor, maybe worth getting a second opinion. I do wish there was a natural treatment plan, but have not come across one yet. There are lots of natural approaches that you can use to help the meds with diet and supplements.
I am also trying desperately to avoid antibiotics. My son really should have taken some for an infected toe, but I asked to try a cream first which seems to help.
Also if you are wanting to avoid steroids then EN has a good record for working as well as Pred.

 

[lenny]

Maybe your son could have a drug to relax him before such procedures?

 

[my little penguin]

With the mri you have to realize the doc is trying to get as much information about dusease location as possible so he can determine if the med are working and how your chikd disease is progressing. But also realize these are peduatric Gi so they know they won't get results they need on every test they order since they are not dealing with tiny adults but kids.
So that is a good thing the doc didn't make your child feel bad for getting upset during a test. Childlife specialist can help your child be less anxious over tests and procedure as well as councilors.
Secondly not too long ago the only meds they had to treat crohns was prednisolone and more Pred . So mortality rates were higher as well as surgery rates .
Kiddis with crohns have a very robust immune system ( almost too strong) which is why immunosupressants tend to work .

To come to grips with meds is a process it took me months . DS was only on pentasa and I cried a lot. Pull the research papers in the pedoatric research section
Google images of bowels removed by crohns
This is your child reality right now until they come up with a better treatment .
EEN can be done but once food is introduced again it's effects wear off.

Honestly there is no natural way yet to fix this very ugly and evil disease.
It just takes time to process that
I have been doing this for 3.5+ years and didn't get to this point over night
The first year is the hardest for you and your kiddo

 

[Axelfl3333]

There does not seem to be any way to control crohns by holistic means a healthy varied diet helps but long term the conventional medicine way is the only route.please remember that the meds are not poison and are there to help some are more effective than others for all individuals.
It's really good to informed but be very cautious about Dr Google he,s a manic depressive and never gives good news also the warning leaflets with your meds are a bad read mainly a cover your back exercise.good luck all the best

 

[CrohnsKidMom]

I have felt the same way about these meds, but I have come to the realization (thanks in part, to the helpful people on this forum) that we are dealing with a heavy duty disease, which needs heavy duty treatment. After considerable research, I have not found really reliable evidence that anything, other than the meds the GI suggests, can successfully manage this disease. There are risks with these meds, it's true. But the priority is to treat the known disease that will definitely cause damage, if left untreated, or undertreated. That said, I always try keep an open mind to any alternatives...

 

[crohnsinct]

May I suggest the book "Beat Crohn's" It is an in depth look at Exclusive Enteral Nutrition but also looks at the various meds and surgery and makes a case for both in given situations.

Exclusive Enteral Nutrition has a very good success rate at inducing remission in kids and is better than steroids at mucosal healing. It does not work for everyone but neither do a lot of the drugs. The only thing you can do is try.

However, as MLP stated, it typically only works while you are on it. Most people will relapse once they return to a full diet. For some that happens after three months for some three years. You just don't know where you will fall. For this reason most docs will start a maintenance med at the same time as many meds take time to build to therapeutic levels.

There is a lot of research being done with treating kids with EEN alone. A period of exclusive followed with supplemental and diet or cycling on and off EEN and full diet. If this is the way you want to go, I would encourage you to find a doc well versed in this treatment and monitor frequently for disease progression. But it is an option that is out there.

 

[Clash]

Here is a great link to a study detailing the proven treatments for CD in pediatric patient. It has great info about EEN as maintenance therapy, I think.

http://m.adc.bmj.com/content/93/9/787.short

 

[CarolinAlaska]

Lindsey, I totally understand where you're coming from. I felt the same way when my daughter was first diagnosed. Now it's been two years. I came to the conclusion that I had tried everything that I could try before I even went to the doctor and it was time to let the doctors help . In spite of the nasty paperwork that comes with the medications (for us it is 6MP), I have found that they have been more successful in helping her than anything I have tried without them. That being said, I have found some natural options to help support the medications . We use essential oils for many things. We take vitamins. Currently we are going to start an anti-inflammatory, clean diet to see if we can get more relief. I'm no longer against the medications, but I do use my head and can be stubborn if doctors glibly want to give antibiotics or suggest medications that she has had negative reactions to in the past. You and your son will get used to the medical tests that are necessary. But if something doesn't seem right, or your son seems to have a very negative emotional effect (like he did) to something that they're asking him to do, listen to him like you did. You are his advocate. He needs to know that he can trust you. We're here for you too.

 

[DustyKat]

Hoping I'm not opening a can of worms here, but just vm Curtis if anyone else has speculated ways of controlling/treating Crohn's naturally? I keep trying to think of ways to get around meds and interventions and tests--obviously only those that seem unnecessary. And since i have no experience with Crohn's so far, i haven't refused anything.

However, the use of antibiotics and steroids worry me because in the long run it just weakens the immune system more. I noted this in another post, but it seems like the meds used to treat the disease just make a different sickness! On top of that, my son was ordered an MRE early this fall, which he was so traumatized by the thought of an enema that he could not go through with it (we got to laying on the table inside the MRI before he begged me with terror and hopelessness in his eyes not to do this to him, so we left). Next clinic visit the Dr. Says "oh, we don't have to repeat it...It's not that important" which really makes me not trust him nor the treatment! Maybe he just needs a new doc we can trust, or maybe i just don't trust doctors.

Just curious if there is anything anyone ever refuses or questions routinely.

TBH I don’t think I would be stretching the truth in saying that just about everyone, if not everyone here, has thought and wished long and hard that there was a natural and effective treatment for this disease.

Unfortunately the younger you develop this disease the more severe/harder to treat it appears to be. That is not to say that you can’t adopt natural therapies but things need to looked at in a harsh light and regardless of the treatment, conventional or not, you can’t become so enamoured by it that you don’t see what is in front of you. Also bear in mind that disease that is untreated or under treated comes with its own set of potential risks and some of them are no less life threatening than the rare and worst effects of the drugs.

My advice would be to embrace a mixture of both, do all you can from your side to help keep symptoms at bay…diet if you feel that is a contributing factor in any way, supplement any deficiencies, exercise, relaxation and counselling. Then medication to assist in helping him gain and maintain remission. No one here likes the meds, even when we see the brilliant job they are capable of we would still prefer for our children a life without meds and a life without this disease.

It is hard when you come to a site like this for perceptions not to be skewed. The vast majority of folk take the medication to treat the disease with no issue. They have no or very few side effects are able to move on and live life to the full. What you mainly see here is people that are newly diagnosed or those with an older diagnosis that are flaring. They come to seek and answers and when they get things back on track again they move away from the forum. Of course this is how it should be but naturally in doing so it can be hard to find the positive stories.

There is little I have refused but I question all the time. Knowledge is power and having that knowledge will allow you to become the best advocate for your child that you possibly can. Your relationship with any doctor should be one of mutual respect. The doctor should not mind answering your questions and allaying your concerns and in return you need to be able respect and trust their judgement and know that they have your child’s best interests at heart.

Thinking of you. :heart:

Dusty. xxx

 

[crohnsinct]

It's really good to informed but be very cautious about Dr Google he,s a manic depressive and never gives good news also the warning leaflets with your meds are a bad read mainly a cover your back exercise.good luck all the best

:rofr. Google is a manic depressive! Love that one! Thanks for the laugh!

 

[lenny]

I don't trust doctors and I have many reasons not to. Lots of mistakes in the past 30 years when dealing with various family members' illnesses. Also, my son in law was an RN and is now a medical student and he's given me the inside scoop on the system and the many doctors who do NOT actually care about their patients or give quality care.

Since my son's diagnosis in March of 13' there have already been some inexcusable mistakes and bad choices by doctors. In September, my then 5'10" son got down to 104lbs and I took him to the hospital where they spent 3 days wondering whether his recent weight loss wasn't in fact due to anorexia! Yes, my son had a very tiny appetite and was afraid of many foods at that point, but he has no desire to be thin and the attending GI wanted to scope my son "just to make sure he was actually in a flare". I refused the test and when my son's FCP came back a week later, it was nearly 700. Then when they finally accepted that he was flaring (he'd been having bloody poops for 3 days) they wanted to keep him an extra day to teach him how to use the feeding tube. When I explained that he'd be drinking the Peptamen, they still wanted to keep him an extra day, just to make sure he would drink it. (Maybe understandable for a newbie, but my son had already done EEN for 6 weeks successfully at home).

This is at a hospital that is supposed to be on the cutting edge for Crohn's.

Listen to what the doctors have to say, read all you can and trust YOURSELF is my advice. I hate to think where my son would be if I'd just gone along with everything the doctors have wanted.

Or, what they haven't wanted. Sometimes I feel like I have to wake 'em up.
Hello???

 

[Clash]

I think it is very important to find a GI that you and your child are comfortable with. Pediatric CD is a long road and the GI will be on that journey with you.

We are so fortunate to have a ped GI that understands that the best way to treat patients is to make sure they understand the ins and outs of the disease and the treatments. There is no time when I have a question about the route he wants to take, whether it be testing, EN, treatment etc that he won't stop and explain his thinking. I appreciate this since I know between the two of us he is the one that has spent decades studying this illness and treating thousands of patients.

There is little I haven't agreed to after he has explained his thought process and given his experiences. And vice versa, if I have testing I want to do or a treatment I want to explore he gives his thoughts, experiences etc.

 

[Lindseyw4]

Thank all of you guys! You're so kind even when I'm freaking out and probably don't deserve it. Your words really make a difference. I recently began working as a residency coordinator and have confirmed many of my observations as a patient/parent that most of the time we're really just a piece of work. That's fine but hopefully still work the doctor is very skilled in, and cares about!

 

[Kamastel]

I have Crohn's disease and was very frustrated with medications failing to control my disease. I was willing to try anything and came across a natural health doctor. We focused on accupuncture to control my symptoms (pain, nausea ect) and along with this I was de sensitized to certain "problem" food groups and educated on supplements to add to my daily routine. This alternative therapy isn't for everyone. I myself, was very happy with the results.. Including improvement of active disease on a follow up CT scan. However.. as a nurse I knew my "best" option was to go back on medication and to use this as complementary therapy.

 

[Sascot]

I can understand how you feel about the doctors. It took a year and a half of frustration and being sent away with pain killers before my son was diagnosed. We had one GP tell us that "sometimes you just have to live with a sore stomach" and others doing the usual "are you happy at school?". But once we got the diagonosis we got a really good team and I cannot fault them so far. Maybe it's worth trying a different hospital?

 

[Cmiano]

I was diagnosed with Crohn's disease in January of 2014. It took a year of prednisone, azathioprine, celebrex, participating in a clinical research trial @ UCSD for me to decide to wholly move forward with a natural approach. Within the last year I've tried my best to familiarize myself with as much literature/videos on plant based whole food diets & their effects on various chronic diseases. I purchased a masticating juicer & have been juicing fresh fruit & vegetable juices, intermittently. It's definitely going to be an uphill battle in trying to ween myself off of prednisone & Celebrex for good. A long battle at that. But one that I feel I'm well equipped for.