Newly diagnosed-- lots of stress--looking for more holistic approach

[rachell]

Hello everyone. I'm already grateful to this forum, just seeing there are other parents out there who understand the stress....

My son (17) was just officially diagnosed last week, but we've suspected it was Crohn's for a while and his Pediatric GI tried to put him on EEN last month. It didn't go well. My son really struggled with getting the shakes down as the days went on and wasn't following it. (We also had concerns with the amount of sugar he was consuming-- 132 grams per day!)

From quickly looking over some of the topics, it seems like a lot of kids are on medications, but we're very resistant to using immune suppressors right now. (Note: I respect everyone's decision to do what they believe is best for their child, including using immune suppressors or not.) Based on my research, it's just not the route our family wants to go. We'd like a more holistic approach and to try to control the IBD through diet. My son's Pediatric GI seems to be supportive of us at least trying.

We're doing an elimination diet right now and he's taking supplements, in addition to Pentasa. He's really struggling with his weight (he's lost 12 pounds in the last two months and was very slim to begin with) and is still having pain, though it seems to be lessening each day. We also have an appointment with a functional medicine physician, but she can't see him until July.

Has anyone else taken a more natural/ holistic approach to treating IBD? Any tips? I'm so stressed out wondering if I'm doing the right thing and any support, resources, and/or tips would be greatly appreciated! Thanks in advance.

 

[my little penguin]

Holistic approach doesn't stop inflammation
It's not like other diseases
Going to tag crohnisinct
There are many parents who have come and gone who started wanting a holistic approach
Since they have used it for other diseases
It doesn't exist for Crohns
Your child's immune system is over active
Immune suppressants put the immune system back to the level of a normal person

That said your child will need to be the one to follow it
Een has sugar
It is not the same as eating nothing but cookies or cakes
Tons of research support een
It heals as effective as Steriods but no side effects despite the sugar
Tpn is the same feed through an iv look up the ingredients
Most older kids use an ng tube for formula only
Tagging Tesscom
Her son was older and used an ng tube inserted every night for elemental formula and removed in the morning
It doesn't work if your child is eating solid food period

The only other non med program
Would be scd
Tagging optimistic on this
And pilgrim

Optimistic Ds uses formula and scd.
No meds but strict scd diet

Most kids lose weight on scd and have to stop

Some kids have ended up in icu

Ds is currently on een .
He had to hold his humira for a bit and started to show signs of a flare
Een is not to be treated like food
It is medicine period and very hard

I will say not one parent on here willing chose immunosuppressants or biologics
All here have researched hours and hours hoping there must be something the rest of the parents missed
Surely something less scary
I know when Ds was dx at age 7
Almost 7 years ago I was adamant I would not let my child take those evil meds
Pentasa seemed like an evil drug
Let alone other drugs

We started in pentasa for a month

My child got sicker -lost weight etc...

No one told us GI refer to is tasa like using aspirin for a brain tumor
Not going to help too much but not going to hurt either

Pentasa basically treats the top layer of the intestine
But Crohns affects the full thickness
So smoldering inflammation is left

Please google the images of colectomy Crohns
To see the damage it does
It's hard since the damage is hidden inside
If the same wound was outside
Would you treat it the same ?

Your intestine is a garden hose very flexible and able to move
Crohns attacks similar to a cut on your skin on your arm
It inflames and area and forms a scab trying to "fix" the intestine
Each cycle of inflammation repeats over time
The more scabs the more rigid your intestine becomes
Think pvc pipe
This leads to thickening so the intestine is now hard and narrow
The narrowing leaves two options due to the pressure of stool being pushed through
The intestine tries to form fistulas (thin weak temporary mini intestine ) to another area
This can be the surface of the skin ,bladder , stomach etc.,,
Obstruction/rupture due to too much pressure

You can live without a large intestine but you can not live without a small intestine
The odds of surgery for kids is 75% within 5 years


I am not trying to scare you but trying to make you aware of the facts
We all have to get to a place where we are choosing a treatment


The second thing is despite researching and soul searching to find the treatment we as parents can live with
Often times the child's body decides that isn't going to stop the progression of the disease and something else would be needed

After a while you get to accept you need to get your child healthy
And the scary meds look like baskets of kittens

Tagging farnwife
She started similar to you wanting the natural route

So long story short
The only proven (scientifically ) no med options for kids
1.) SCD diet but be aware most lose weight
2.) EEN to induce remission then 90/10 or 80/20 to maintain remission
3.) Crohns exclusive diet -partial een plus restrictive diet
4.) ibd aid diet -not as successful

Some combine scd with partial een

Ds has tried all diet only een is enough by itself
All lower classes of meds and combos
But ended up on humira and mtx
He has juvenile spondyloarthritis as part of his crohns(arthritis is far worse than his Crohns -no diet can fix that )

We all had to try ...
Only 2-3 succeeded that I know of in the past 7years

I will post the link to the Crohns elimination diet

Good luck finding your child "fix "
I spent close to a year before Ds got to a happy place with medicine /diet

 

[my little penguin]

http://www.crohnsforum.com/showthread.php?t=71686

My thread on Crohns exclusive diet

 

[my little penguin]

http://www.crohnsforum.com/forumdisplay.php?f=268

Thread on diet and cooking

 

[Maya142]

Hi and welcome!

I have to agree with my little penguin. Unfortunately, most of us started out where you did - not wanting medications. When my older daughter was diagnosed, we tried our hardest to avoid biologics. But she got sicker and sicker - went from being a happy kid to one that was always in pain and always exhausted. She missed a lot of school and was miserable.

We agonized and agonized and finally agreed to try a biologic. It took a while to kick in, but I got my happy teenager back.

Then when my younger daughter was diagnosed, we went through the whole thing AGAIN and I agonized all over again about putting her on biologics. When we finally did, she got better and became her normal sense.

For us, the meds were scary but at some point the disease became MUCH scarier. With medications, side effects are possible. But with Crohn's complications are probable if it remains uncontrolled - and that includes serious complications, like fistulae, abscesses, strictures and sepsis.

They have both been on biologics and immunusuppressants for years and I can honestly say we have never regretted it. My only regret is that we let them suffer so long before putting them on proper medications.

We have not done EEN but my daughter has done supplemental EN. Like your son, she had a very hard time drinking the shakes. She could not maintain her weight, much less gain while she was trying to drink them.

Eventually her GI insisted on a feeding tube. She was taught to insert the NG tube every night and remove it in the morning (so no one at school would have to know). I was shocked at how quickly she got good at it. It was surprisingly easy - she would insert it while drinking water and it went right down. Within a week, she could do it in 10 seconds!

At first, she was very against the tube, but once she figured out how much easier than drinking shakes it was, she was all for it!

If you are going to try EEN again or even supplemental EN to get his weight up, I would encourage you try an NG tube if he is unable to drink the formula. Some kids have no trouble drinking, and others just can't do it.

Our GI is ok with it going in either way - orally or by tube.

Pentasa tends not to be effective for Crohn's because it only affects the top layer of the intestine. Crohn's affects every layer, so Pentasa just isn't strong enough often.

6MP and MTX are the immunosuppressants that are usually used. We have found that my girls had more side effects with them than with biologics. They have had NO side effects at all with biologics.

Good luck with whatever you choose.

 

[Pilgrim]

We are using the SCD diet. Our daughter was diagnosed at 3 and we had started the diet briefly at that time, however she was so sick that we ended up with biologics (Humira). We also tried several other drugs, and EEN. We had good response to EEN if you are willing to try it. It is 100% formula nutrition.
Anyway fast forward to today. Our daughter is taking Humira and Methotrexate injections but hasn't been responding well and we have been working with strict SCD (diet). She's 6. We hope to see improvement enough that we can reduce meds.
I think the takeaway from our experience is that drugs were needed for stabilization. Now she is stable and we are working hard to wean the meds with diet.

 

[SaxLady]

I disagree with earlier poster who said Diet does not help. My Gastro Dr, a Specialist at John's Hopkins, said that IBD IS related to food/bacteria/immune. It is all related. Your poor son tho! I have a heck of a time staying on the diet that heals me. No sugar, LOWFODMAP, Close to Autoimmune Paleo. I had MRT testing for food sensitives and that helped a huge amount, but again limited my choices of food. At one time I lost 20lbs when I changed my diet, because my carb intake was so low. They say to increase the healthy fats to make up for the lost calories, but when you are really inflamed fat is hard to digest. Good digestive enzyme helps me with the fat absorption. Diet is a slow process. If he is really sick, and he was my kid I would probably consider the immune suppressants while I worked on the diet and lifestyle issues. Problem with kids tho, they are going to want to eat anything, especially if they are beginning to feel better. He is going to have to get really educated about his health. He is going to make mistakes and pay for it. We all do!! Even us adults, and kids are so much more compulsive!
There is a blog article on this Forum about a Dr in NZ who may have "cracked the Code" on IBD. Bacteria! I believe that totally, because when I don't feed those bacteria, I get better. (Low Fiber, NO SUGAR, minimal fruit, no grains) I have spent 4 years researching different diets, etc and trying a lot of them. It is so Friggan complicated!!!!! All lifestyle issues are also a factor. Stress too, sheesh, kids have a lot of that and he is getting ready to go to college?
I would agree the Naturopath is the way to go. Stinks you have to wait so long. Maybe you could call their office and ask them if they can recommend some good websites/podcasts. PM me through this site if you want some specific names.
Bless you. Its bad enough I have Crohns, but I'm older and my kids are fine (so far). I feel you, we love our kids more than our own lives. Whatever you do, just remember, YOU CANT FIX THEM. You can empower them, support them, facilitate a healing environment but the choices will ultimately be theirs. They have to learn for themselves. Such is life. Whatever else you do, DONT let their sickness make you sick. The stress of a sick child can take a parent down. They need you to be healthy, so TAKE CARE OF YOURSELF, give what you cannot change to God and leave it there! Breathe, trust. You/He are going to have really bad days, and some good days, and it may be a slow climb towards health, but it is possible. You just have to slog through a LOT OF CRAP to find what works. It's different for everyone. Sending big hugs and prayers.

 

[my little penguin]

https://crohnsdad.wordpress.com

 

[Optimistic]

Hi. My son is on partial EN and SCD, 3 years in. He went into remission with the big bad boy of meds, steroid, and months of EEN before we finally settled on this approach. It is not easy, but it is working for now. You've probably seen some studies that show success in some patients with SCD and in many with EEN. I've not come across anything on results for supplements or eliminations diete other than some symptom relief. Have you?

I'm sorry you have this diagnosis. Those first days were so dark for me. It was easy for me to get my hopes up with antedotes but I was so freaked out about uncontrolled crohns that sugar consumption never crossed my mind!

 

[Maya142]

The first year is typically the hardest and most overwhelming. Once you figure out what works for your son, things will get easier.

Typically EEN is great for inducing remission but not maintaining it. Most kids flare once food is reintroduced. There are a couple of success stories with diet - like Optimistic's kiddo - but unfortunately not so many.

I think the key with trying diet is monitoring with scopes and Fecal Calprotectin to make sure inflammation is really under control. It is also good to have a plan B in case diet does not work.

 

[Tesscorm]

Hi Rachell,

Welcome to the forum (but am sorry you had to need to find us).

As we all know, and what you're feeling now , it's extremely difficult to agree to give your child any of these meds. As MLP said, when I first read about the 5-ASAs (pentasa, etc), those scared me too! Now, I'd be ecstatic if that was all my son needed!

My son was diagnosed just before turning 17. His initial treatment was Flagyl (antibiotic) by IV for a week and EEN for six weeks. He did not drink the shakes, he ingested the formula overnight through an NG tube. He inserted it nightly, the formula was pumped while he was sleeping, and he'd remove it in the morning. (Really, the whole tube insertion/removal was much, much easier than it sounds.) He responded very well and very quickly.

After the six weeks of exclusive EN, his pediatric GI set his maintenance treatment as supplemental EN only, at half dose (the only med he was taking was nexium). (Very happy mama with this news!) For the next year and a half, he continued using the NG tube night, ingesting 1500 calories per night. During the day, he ate a regular diet. He had no symptoms. He gained back all his weight plus some, continued at high school, played on two hockey teams, etc. All was good.

But, throughout, his CRP fluctuated, not extremely high but not at normal either. And, MREs continued to show simmering inflammation.

When he was 18, he was transferred to an adult GI. The new GI did scopes and an MRE. He strongly recommended remicade (or humira). He said the simmering inflammation would eventually cause complications; unfortunately, no one could say when this might happen. If/when complications arose, they could be mild or severe but, if severe, it could happen quickly and it might result in a bowel resection (surgery).

It was extremely hard for me because my son looked and felt great. :ybatty: I asked about all other treatments - another round of flagyl? steroids (even a course of these seemed preferable to biologics)? LDN (another quasi-alternative treatment)? But GI felt strongly that none would be acceptable. (BTW, our GI and the IBD clinic/hospital is very well known and respected - I also called in lots of favours to get opinions, recommendations re the GI when my son was transferred. )

In the end, as my son was 18, I spoke with him and explained all the pros/cons of each option. Because, the reality is there is no absolute right or wrong decision, none of us can see the future; all we can do is make the best decision we can possibly make with the limited information we have. We discussed the pros/cons of biologics, of continuing with supplemental EN and watching what happened, adding LDN to supplemental EN...

My son did not want to risk surgery, a bowel resection, possibly needing an ostomy (even if temporary) so chose to add remicade. He was leaving to go to university and didn't want to go with any of these risks/concerns. Given his age, and I couldn't say with certainty that a different option would be better, I had to go with his decision.

It wasn't easy for me. I certainly felt defeated and terrified.

But, four years later, he is doing very well. Subsequent scopes and MREs are completely clear. He will now be graduating university this summer. He continues to play hockey, has travelled with his friends to Europe and Caribbean, works in the summer, eats what he wants, drinks (not excessively, at least, not very often :ack at parties, etc. So far, it's eliminated his inflammation and kept him healthy.

To be completely transparent, in the last two years, he has fought lots of colds, bronchitis, a skin rash, etc. But, as the first two years were completely fine, I'm not sure if it's remicade or just a bad couple of seasons???

If I could replace remicade with a safer med, I would in a heartbeat. But, I wouldn't make that trade if it meant he'd end up with a poor quality of life, would miss out on all the fun/excitement of being a young adults, needing surgery, etc.

Also, diet was never a viable option for us - my son was (and still is) way too picky of an eater to live on a restrictive diet.

I certainly remember how difficult a decision it was. :ghug: Do lots of research and explore the options (this forum has lots of members with many different opinions and treatment styles/preferences). But, unfortunately, as was also said above, keep watch and remember crohns doesn't wait for you to explore... Unfortunately, you do need to be mindful of this...

And, don't ever hesitate to ask more questions or just ask for some support. :ghug:

 

[Farmwife]

Hi and welcome.

My girl was dx at 3 but is 8 now.
We tried the holistic route.
When I say that I mean we went to a renowned neuropathic doctor.
Bought the best vitamins and supplements that we could.
After all who wants to put their precious baby girl on medicines.
She also did full EEN . No real food for almost a year.
But sadly that didn't stop the progression of her disease.
I'm still glad that we got to try it but it just didn't work for us.
Now she's on Remicade and doing well.

I hope what ever decision that your child makes it's the right one. Hugs to you all.

 

[MamaHenn]

I came to this forum roughly three years ago with the exact same thoughts. My son was 10 at the time and surely I thought he can't be like all the kids I was reading about. I honestly cried after I posted a similar post to yours when I read the responses which my sensitive self took to be so harsh and almost cruel. I thank God every day that my son doesn't have even 1/4 of the issues that lots of kids have on here. He was diagnosed after being anemic for almost a year and went through about a two week period of "feeling full". He also wasn't growing as quickly as he should have. We chose a more holistic approach that involved going gluten/dairy/corn free, taking supplements and LDN (we saw a nutritionist that specialized in IBD). Our GI at the time was not thrilled with it but gave us a shot and even surprised herself when his numbers came down significantly! We were able to maintain, he was gaining and growing for about 2 years...then puberty started to hit and while he (thankfully) didn't present with any more issues, his numbers started creeping up and growth started slowing down. We made the decision to start Remicade (still maintains diet about 80% and LDN) almost a year ago. I cried and cried after coming to that realization that we just had to. But all that to say, he is doing well, growing and gaining. The difference between last year and this year is amazing. Now I realize he is younger so we had a lot more at stake with growth.

Lots of hugs to you. It is so overwhelming and there is just so much information out there. This forum is an amazing resource.

 

[Magnolia24]

I was diagnosed in my early 20s and SCD has made a huge difference for me. I have continued to take anti-inflammatories (now on Pentasa), but no longer on an immunosuppressant, and it does not feel right at this time to change to a biologic.
I also take Curcumin, Probiotics, and Iron.
If you are interested in learning more about managing IBD through diet, I've found scdlifestyle.com to be a really approachable and informative place to start.
Best wishes to you and your son!

 

[Sudsy]

My older dd was on SCD for five years (with meds--a lot of them--in the beginning and eventually tapering off of all meds for two years. She was on low level meds after the two years). WORKED GREAT for her. Yes, it's a lot of work, but having a sick kid is a lot of work, no matter how you slice it.

Aside from the sites mentioned, Pecanbread is very good. Make sure to get the Breaking the Vicious Cycle book, and join the very active BTVC Yahoo group.

btw, my dd's GI doc at a major metropolitan teaching hospital strongly suggested all of his IBD patients follow SCD.

Good luck and I hope things start going better soon.

 

[polly13]

Hi Rachell, all of us parents on here have been where you are so absolutely fully get where you are coming from and only you can chose whats right for your son. I have to however echo what MLP has said and to add that the use of biologics has been life changing for my dd. We were extremely reluctant to put her on a biologic as she was only 2 when she was diagnosed with Crohn's and we did try everything else first and in the end we felt we had no choice, Im only sorry now that we didn't do it sooner. She started on infliximab just shy of her 4th birthday and eventually about 6 months later we moved to humira, which in the most part has been working extremely well for her. She is now almost 9 and holding her own in the most part. When I asked the GI nurse what the alternative to Humira was at the time she told me there wasn't any and most likey my dd would end up having to have surgery which had been discussed a lot in the previous 6 months, but having said all that myself and my husband agonised, cried, agonised some more and worried but I now know we made the right decision. Good luck with your decision and I hope your son finds remission without the scary drugs, however I think you may need to have it at the back of you mind that holistic approach might not work.

 

[kimmidwife]

We too had the same thought process when we started this journey. Our first daughter was diagnosed at age 11 and is now 19 and our younger daughter was diagnosed at age 7 and is now 8. We have tried every alternative out there.
The shakes were very hard to drink my daughter dod it for six weeks when she was first diagnosed.
One med to look into which is kind of alternative is Low Dose Naltrexone. There is a forum here about it and you can also google Low Dose Naltrexone and Crohn's disease. There is a lot of info out there about it but it doesn't work for everyone.

 

[rachell]

Thank you for all the replies. I think the biggest frustration has been with the doctor. He told us not we NO dietary changes were necessary and that my son would be on medication for life. I've spoken to enough people with Crohn's who have certain triggers to different foods (which seems different for everyone) that I immediately disagreed. We have had a lot of issues with this doctor, including him asking us to reimmunize our son and put him on the Pentasa right away. Then at a follow up visit he asked why he was taking Pentasa as that would cause organ failure after getting immunized. We've had to start recording (with his permission) the appointments because there are so many contradictions. It's also taken his office up to 6 days for anyone to call us back about an important and time-sensitive question. I made an appointment with a pediatric GI at an excellent university hospital a little over an hour away and think it'll be worth the drive just to be able to trust what the doctor says. We are looking at the SCD diet and trying to figure out what his triggers are. I do appreciate all the links and information. Thanks again.

 

[Tesscorm]

Accepting and adjusting to a diagnosis is a very hard thing to do and, if you're not 100% confident in your doctor, makes it so much harder.

Although our GI isn't far distance-wise, with traffic, it can, at times, take an hour to get there. But, I think it's well worth that travel time to have peace of mind with who is caring for your son.

Just to speak to some of the points you made...

diet - we've also been told diet is not an issue (and, this has been told to us by two very reputable IBD clinics). However, while I believe diet in itself does not cause nor cure crohns, I do believe some people have certain sensitivities which can cause symptoms. Whether those symptoms are from IBD or IBS, I don't know. So, for this reason, diet may help. Also, on the flipside, diet can help alleviate symptoms, for example, if your son is suffering from diarrhea, rice can help, when inflammation is present, high fibre foods may irritate, etc.

I think, at times, there's a bit of misunderstanding when GIs say diet plays no part - I think that's true in that it doesn't cause or cure crohns but diet does play a part in symptom control.

Immunizations - something to consider... my son had all the usual childhood immunizations, including some extras (ie meningitis, HPV, chickenpox, etc.). Prior to commencing remicade, our GI asked about vaccines and I said he'd had all necessary so no tests were done. A year or two after starting remicade, for travel reasons, his immunity levels were tested and we found out that he'd never developed antibodies to mumps. While rare to not build up antibodies, not unheard of either (but I didn't know this). By this time, we could not give him a booster shot because he was already on remicade (no live vaccines allowed while on immunosuppressants/biologics). I wish I'd known about this before starting remicade as I would've arranged for him to have a booster. And, while mumps is rare, we did have an outbreak this year and it left me on edge for months.

Just a couple things to consider.

Good luck at your appointment - trusting your doctor is so important! :ghug:

 

[yikes]

I'm 15 and I was diagnosed at 6 with Crohn's. I go to acupuncture every other week for Crohn's as well as anxiety. It works as well as taking preventative medication for me; I almost never get flares that would be seen as anything above mild. I only take meds as needed for flares that interrupt my daily life, in those cases I take pentasa/apriso. Flares that I do have I can pretty confidently blame on my diet. I have cut refined sugar out completely before, and I know it's what causes most of my flares. (I have also been told that gluten and dairy can be bad for Crohn's, but I haven't found that to be true for me.) I'm just too weak willed to cut it out of my diet now lol. However, I'm sure if I did it would decrease the number of flares I have and reduce the minimal amount of meds I have to take.
What I'm trying to say is that it is mostly possible for me to control my Crohn's holistically. It's not impossible, and diet defiantly has a huge impact on Crohn's. However, you can't completely manage it without medications. You have to use them at least as needed.
Crohn's is also different for every person who has it, so it may be impossible for your son to manage his Crohn's the way I manage mine.
All that being said, I would encourage you and your son to give acupuncture a try, and experiment with cutting out gluten, sugar, and dairy. But if you find medication to be the thing that works best, don't be afraid to go that route if It's what your son needs.