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Hello, my 16 year old son was just diagnosed with Crohn's disease yesterday.

My wife and I are very nervous and scared, and are really wanting to approach this the right way.

We have not had a lot of information yet from the doctor and expect that we will find out more information as this progresses.

This started a few weeks ago when he was running a fever, throwing up, and having abdominal pain. Went to the family doc, then the ER as appendicitis was suspected.

At the ER, the ER doc did a CT-Scan, which showed inflammation in the ileum. When he heard that we had the exact same thing happen a few years ago, he called and got him into a GI doc the next day for a consult.
The GI scheduled him for a colonoscopy, which was done yesterday.

The exact phrase the doctors used to describe what he saw, "classic rip roaring Crohn's". He went onto say, that technically, the diagnosis has to be confirmed by the biopsied tissue, but he was starting treatment immediately.

This GI doc has been practicing for 20 plus years and he was skeptical that my son had Crohn's initially, as the pain was not severe the day after the ER, in fact it had completely vanished. So I am thinking the pathology report is but a mere formality.

We picked up the prescriptions last night and he started them this morning.

He was started on Prednisone and Imuran. The Prednisone will go away in about 6 weeks but it sounds like the Imuran will be around quite a while if it is effective.

They sent him home on a "low residue" diet, lab work to do, a small bowel barium x-ray, and then a follow up at the Doc in a few weeks.

Any help on some "low residue" food recipes, would be much appreciated, specifically, my wife is asking if honey is ok?

 Reply posted for TsDad.

My son was also diagnosed with Crohns at age 16. It has been a learning experience for our whole family. He is now 25.

Over the years,  I have read about many different approaches and types of treatment.. What works for one, may not work for another-- it appears to be a very individualistic illness.  I think the majority of people who are diagnosed in their teens or early twenties are able to get everything under control with a combination of medications and/or lifestyle changes and it becomes a minor inconvenience in their lives.

Adolescence is a difficult time for any kid and adjusting to a chronic disease makes it an exceptionally tough time in their lives. They want their "lifestyle" to be changed as little as possible. (i.e.giving up pizza just may not be in the cards). Compliance is frequently an issue at this age. Against the advice of his physicians, my son went off all meds - and was fine for several years while partying his way through school.

Hopefully, you will have found a doctor that knows a lot about IBD and has time to talk with your son when needed. You may also want to check out the resources at his school. The nurse at my son's high school was an invaluable resource for us when he was going through a difficult period.

Hopefully he will bounce back quickly for a long time.

 Reply posted for TsDad.

Ts Dad,

Are you asking for the formula to take the 50mg Nalextrone to LDN?

I am keeping you and your family in my thoughts. 

Breezy

 Reply posted for TsDad.

Just a quick update on T's situation...

We got the pathology report back that confirmed Crohn's.

We did  the small bowel x-ray on Friday. The radiologist spoke with us after-wards and his damage is not extensive, seems to be isolated to the last foot of his small intestine and no leaks or fistula's. Looks like he is going to avoid surgery for the foreseeable future, which is great news.

To those on the LDN regimen, do you have anything that would help me bring this up to his GI doc?
I have the study from the American Journal of Gastroenterology, which is good, but still a very narrow study.

Does anyone know where I can get a copy of the formula for the LDN?

 Reply posted for alanschachter.

Thanks Alan,
Perhaps it's time to start a Moral Capitalists party!

SCD has it's flaws but overall it has not only improved my health but it allows me to feel for myself what is good for me and what is not - my guess is a combination of healing 'leaky gut' and reduced insulin level. With time and further research I have adapted the diet to suit me and I will never stop researching unless we find a complete answer. As you have commented before, I  too think other treatments/supplements are often more effective, or only effective,  when used alongside scd or paleo. One observation I have is that before scd I had bad bacterial overgrowth. Probiotics made me nauseous and sick and antibiotics (for a separate infection) helped my uc. Now probiotics help and the same antibiotic  makes the uc worse.

Ts Dad. Apologies for 'borrowing' your thread for a moment. I hope your son's early treatment is starting to make him feel better. I  think it is really important to let the doctors stabilise everything and  then take time to investigate the  available research and alternatives thoroughly, especially if your son is willing to take an active interest in this path. This community provides a great deal of insight into IBD as well as moral support and commercial interests rarely appear and are usually removed rapidly.

 Reply posted for TsDad.

I am sure I speak for Alan as well in saying that we do not sell books but I would gladly send you my copy of the book I recommended at my own expense if I thought it would do any good.

I have a scientific background and understand the benefits and pitfalls of double-blind trials and I know where to find them but I don't have time to wait and I don't think they are going in the right direction to cure me at the moment.

We all have our own opinion of what treatment is acceptable and it changes with time and individual experience but when my health deteriorated I decided that I had nothing to lose by avoiding pizza, chocolate and toast for one day/one week/one month. I will never regret it. I may not be cured but healed is a huge step in the right direction.

Personally I think we will wait a long time for an independent researcher to find the key and a way to let us all know, and before it works I believe we will need to take a radically different approach to eating inflammatory oils, inappropriately processed grains and lectins, and hfcs.

 Reply posted for alanschachter.

Yes, that is the same study I found. I have it and will be showing it to the doctor. Very promising, but I sure wish more data was available. Unfortunately, drug companies are the ones funding most research and there just isn't much money in it for them.

I understand the diet is very helpful for all IBD. But what I am not seeing is a good study that shows it's percentages broken down.
What I have found, that is confirmed by scientific study is:
The SCD appears to be on the right track for UC and several other GI problems including Crohn's for help controlling the disease.
SCD appears to be a restrictive low residue diet.
What I am also finding is study after study that shows a definitive difference in the immune response of Crohn's and other IBD. I have even found a few studies that shows evidence that Crohn's immune response is a response to a specific pancreatic enzyme in the small intestine. And it also shows evidence that it is a viral immune response, not bacterial.
SCD has it's place, but it is not a cure in my opinion. But if the doctor, or I find any scientific merit to putting anyone on such a strict and expensive diet, I will consider it. But I am not willing to take the word of a stranger on the internet that is claiming the benefits and trying to sell me a book. That is a commercial endeavor and not research.
Get off of the surface web and use google scholar to search the deep web, way more relevant info available there.

 Reply posted for TsDad.

I am also very vigilant and sceptical and I followed my doctors advice to the last pill for five years while my health deteriorated. Finally I decided that scd wouldn't do me any harm and that I would never forgive myself if I didn't try it before I needed surgery.All those years of immune suppression and horrible side effects of medication now make me feel angry  and frustrated that we are told diet has no effect.

If you want to see for yourself how 'scientific trials' can be manipulated and interpreted to give the results the researcher wants start reading the blog Hyperlipid. Not easy to get started on and not specially about IBD but it is written by a UK veterinarian who uses diet to help his own health. He has some fascinating theories and you can usually see the trial results for yourself to make up your own mind.

I took the attitude that food was safer than medication (and the meds were still there if I needed them) and when it worked I started reading and was amazed to find  plausible explanations for almost everything I have experienced. If I had done too much reading in advance I wouldn't have known who to believe.

 Reply posted for alanschachter.

Initially, it would be nice to find something like this...
http://www.nature.com/ajg/journal/v102/n4/full/ajg2007152a.html
Which I do plan on bring with me to the doc, but I would like something similar for SCD. This is not a comprehensive study, just a pilot, but it is from a reputable location. They are not trying to sell me a book as they claim the benefits.

 Reply posted for alanschachter.

I've run across them all in searching for any research on SCD, but I am finding the same thing on all of them. Lots and lots of "personal accounts" and no actual scientific studies. I will narrow the search down and see if I can find any later when things get settled for the evening.
I have learned to be very vigilant and skeptical when looking on the web for medical research. I can find first hand accounts of how marijuana has been successful at putting diabetes into remission, but you won't find one iota of actual science. (not to mention common sense)

 Reply posted for alanschachter.

I am looking at the SCD diet, but I am not sold on it as I can't find a single study that was conducted in a scientific manner to support or refute the diet. I will also consult with a dietitian before I endeavor on something such as this diet.

Has anyone ever tried an Atkins style low carb diet? From reading the available information on the web, it sounds like SCD is a modified version of Atkins, which does have sound scientific research available, albeit mixed results, but the research is available. And it does show some benefits for certain individuals, but I have found nothing as it relates to Crohn's. All of it is from a diabetic or heart disease aspect.

 Reply posted for TsDad.

Scd should work without the intro diet but much slower and it will be more difficult to work out individual problem foods. It's easier to get going if you can see results quickly.

LWB is a gentler way to start, just reducing carbs to a more acceptable level, but the extra benefits from scd are really worthwhile. Cutting out  grains altogether and using scd yoghurt.

Just think of the diet as eating plenty of meat, fish, poultry and mature cheese with lots of extra veg and rich butter/ French cream sauces instead of starches and it's not so hard to stick to. I love Indian food and a lot of it is scd compatible.

I no longer have food cravings and can go for hours without feeling hungry. Without trying the diet for myself I would not have dreamed this was possible even before uc. Will your son read LWB himself?I have found one of the biggest benefits of diet is having control of my own health.

Warm wishes

 Reply posted for alanschachter.

I did some reading about the SCD and I honestly do not see the intro phase as a possibility.
The theory appears to be sound and all, but I seriously doubt my son will even remotely eat the stuff they mention and I don't see anyone else in the family being able to stick to that either, especially me.

The diet after the intro phase is more realistic but it sounds like the intro is so vital to the success of the diet that it would be fruitless.

Does anyone have any success on this type of diet without the intro phase?

 Reply posted for TsDad.

p.s. honey is ok for my daughter but get local honey from your area.  Keept a very specific food diary like saying chicken say exactly how it was cooked with what ingredients.  Stay away from greasy, fried, no skins on foods, no seeds, nuts, no corn, no raw veggies, no processed foods, no junk foods, no sodas.  My daughter stays away from steak and most meat.  She is allergic to fish but salmon is so good for IBD patients.  There's the SCD diet that you're going to hear a lot about and you can google it and see the ok foods.  It's really eating like your great grandma would have eaten.  Really limit milk too or just stay away from it while flaring.  Try almond or rice milk.  While flaring, I'd suggest very soft foods.  The rule of thumb would be if you can smash it and eat it with a spoon (like fish or chicken) it would be ok but you can't smash up steak with a spoon to tough to eat so it would be too tough on the digestive system.  Also eat more small meals instead of 3 big meals.  There's water called Smart Water which has electrolytes in it which is good too.  Oh, I don't know if the doc told you while your son is on Pred make sure he only gets no more than 2,000 mg of sodium.  That is what causes the puffiness.  No frozen foods, no canned foods, limit dairy, check all labels for their sodium levels.

 Reply posted for TsDad.

Hi T's Dad and Mom too.  My daughter was 16 when she was diagnosed with UC.  I know how you feel.  A ton of questions and wondering what to do.  My daughter has been to many docs.  First her pediatrician who referred her to a GI doc.  Then that doc stopped taking our insurance so we went to another GI doc who was the WORST doc I have seen (he said to just have her colon removed to get it over with).  I was shaking and sick to my stomach after seeing him not to mention my poor daughter hearing this too!!!!  Then I took her to an IBD pediatric specialist who we loved and I was crying because I finally got the answers to our questions and she was always there with emailing me back or calling me back.  Then my daughter turned 18 and we moved over to an adult IBD specialist who she loves so much.  I think going to an IBD specialist instead of a regular GI doc really makes a difference.  Even going to a teaching hospital like at a university would be better than a regular GI doc.  What helps my daughter is watching her diet, taking her vitamins and probiotics.  She also takes Lialda.  She was on Azathioprine but was having so many issues getting sick so much, her IBD specialist told her to stop.  This website is the best!!!  I didn't even know about probiotics until I read about it on this website and went over to Whole Foods for help.  It turns out the IBD specialist says so many UC patients have bacteria overgrowth that the probiotic helps.  She takes Ultimate Flora Critical Care 50 Billion twice a day now that she's off Azathioprine.  But everyone is different and what works for one may not work for all plus what works for an UC patient may not be the same probiotic for a CD patient. 

 Reply posted for TsDad.

Finally got the courage to post :-) Don't worry we're not going to double team the board, I just spend more time at home and sometimes have different concerns than Ts Dad.
If I find out I've been counterproductive all I can do is change that. Hopefully, we can help others too.
Thanks,
Ts Mom

 Reply posted for alanschachter.

Thanks
What other treatments are available besides immune suppression and anti-inflammatory drugs?

I will ask him about the facebook friend, but he has not been very forthcoming about talking so far, I don't think he has totally accepted things just yet.

He is a resilient young man and has overcome his share of issues before this so I have no doubt he will do what he has to do for controlling this.

 Reply posted for TsDad.

Hi Ts Dad, I'm Claire Mom.  Claire is 7 and she too, had rip roaring CD at age 6 (I like your descriptor!).  We went home from the hospital on almost the same regimen as you but it was June 09 - prednisone and 6MP (Imuran's cousin) and prilosec.  The book that was the most helpftul to me in feeding Claire as close to what we consider "normal" and made sense was What to Eat with IBD by Tracy Dallessandro (hopefully I'm spelling that right).  Anyway, she is a dietician that got diagnosed initially with UC and finally with CD.