my poor kiddo- to medicate or not to medicate crohn's.

[mopinko]

my youngest, 16, has crohn's. dx'd 8 years ago. in the beginning she flared and flared, and ended up on immune suppressants because we had such a hard time shutting them down. prednisone seemed to bounce right off. she kept insisting that the meds she was taking for maintenance, an anti-inflammatory, were making her feel worse. eventually she just refused to take them. needless to say, the docs did not like this, nor did i. strangely, after this, there were no flares.
well, the doc said recently, lets do a scope. if you look good, we will talk about this. well, the scope showed mild but widespread disease. so, she agreed to try some meds again. she was given basically the same drug, but an extended release version. lo and behold, we ended up in the er the other night with pretty strong bleeding. she had also been having increasing pain, and a couple bouts of diarrhea.
clearly, she cannot take these meds. this is the case in almost 1/4 of crohn's patients. which leaves us between a rock and a hard place. there are only a couple of things you can take for it. should be an interesting conversation with the doc.

[cpompilo]

1. Crohn's is a horrible disease

I'm so sorry your daughter has Crohn's. If I may, I'd like to suggest some treatments for her that you probably won't hear about from her doctor.
I have suffered from Crohn's for 21 years. I was dx'd in 2001 - doc said I was one of the worst cases he'd ever seen. I did the standard medical treatment (prednisone, 16 pills/day of Pentasa) for 3 years. During that time I was hospitalized twice because of the Crohn's. Doc put me on 6-MP (immuno-suppressant) which nearly killed me. My condition continued to deteriorate.

Long story short - I found the Specific Carbohydrate Diet and it saved my life. People with bowel disease do not have the enzymes necessary to digest di and poly saccharides (long chain sugar molecules). Those sugars stay in the gut and feed bad bacteria which produce toxins. By eliminating foods that contain di/poly saccharides the bad bacteria eventually die off thus breaking that vicious cycle.

I urge you to read 'Breaking The Vicious Cycle' by Elaine Gottschall. The website is www.BreakingTheViciousCycle.info
There is a website for children on the SCD (Specific Carbohydrate Diet) that outlines stages of food introduction after doing the initial intro diet. It is www.PecanBread.com

There is a wonderful support group for the SCD at [e-mail] (There is a 15 year old who posts in this group).

In addition to the SCD there is a treatment for Crohn's using Low Dose Naltrexone. See www.LowDoseNaltrexone.org There are clinical trials for LDN & Crohn's at Penn State University.

If you get your daughter on the SCD then her gut can begin to heal. She must be feeling very scared
and I know from experience how painful Crohn's can be. I have been on the SCD for 5 years now and have been symptom free after a year on the diet. The food is awesome and healthy and many luscious baked goods can be made with nut butters and nut flours (instead of wheat flour). It can be difficult at first because everything eaten must be made from scratch. It is totally worth it IMO.

Carol

[Warpy]

2. Thanks, I hadn't heard of this specific diet, it makes sense

and is certainly worth a try. While some amylases are in saliva, most are secreted by the small intestine. If there is small intestine involvement, the diet probably makes a big difference. In any case, indigestible polysaccharides are well known irritants in Crohn's along with the fibre in beans and many veggies.

Still, the lady is a food faddist and some of her material isn't particularly accurate. For instance, it doesn't really matter what the cow eats, it's all turned into beef and fat. Feeding them grain at the end just ups the fat.

Still, if you're willing to do the work in cooking the stuff, it's certainly worth a trial for a couple of months. By that time, you should be able to see some differences.

There are more than just a couple of drugs these days. The low dose Naltrexone therapy is in limited trials now, but should become available if the data are good.

I've also seen Enbrel create miracles for people with intractable disease, but a lot of people have trouble tolerating a course of it.

I'd really hate to see a 16 year old have a colectomy because nothing else worked.

[mopinko]

3. embrel is a possibility

although the last i heard it was not as affective as expected. part of the problem is that it is hard to find subjects for drug tests on kids. so much just ends up being doctors trying it without the controls of a well designed study. i am thinking that perhaps they will try to get her into a study, now that the front line drugs do not work for her.
i will talk to them about the diet, also. mostly the only advice they have given us so far has been in regard to low residue when she is flaring. we will see. i am sure they will have an opinion.

[cpompilo]

4. Just want to add

that I have eaten both grass fed and 'regular' beef and I have not noticed any difference in the way it affects me - so I am not fanatical about grass fed anything.

I make yogurt with half & half (must be cultured for 24 hours to get rid of the lactose) and it is wonderful - especially if dripped - becomes very dense and rich. It is full of probiotics.

Low dose Naltrexone is available with a prescription. I had to find a doc who knew about it and was willing to prescribe it. It is an off-label use drug for many auto-immune diseases. It is a immune modulator. For Crohn's patients it is recommended to use the cream to by pass a compromised gut. I use 3 mg cream and get it from Coastal Compounding in Savannah. They use the formula created by Dr. J. McCandless (using emu oil) who developed it for autistic children. The pharmacy will share the recipe with any other compounding pharmacy who requests it. www.CoastalCompounding.com The cost is about $25.00/month. Insurance does not cover it.

I have only been on Low dose Naltrexone for 3 months and this is the best I have ever felt! I appreciate the endorphins! (People with bowel disease don't produce much in the way of endorphins I learned).

One more thing about Crohn's: Many are deficient in B12 as we lack Intrinsic Factor necessary to carry and help with B12 absorption. I give myself 1cc of B12 shot once a month - it makes a huge difference for me.

[hyphenate]

5. May I use your info and links

in an email? My niece is now 24, but has been diagnosed for a couple of years now. She was having a difficult time trying to tell people how miserable she was feeling until she had a colonoscopy and that's how they found out. She is already on something, but I think she might like to have options. She's always been thin, but this certainly hasn't helped her. It runs in the family--her half sister, my niece Tammy, suffers from IBS, though it might be IBD.

[cpompilo]

6. Yes, of course! Please spread the word

The Specific Carbohydrate Diet saved my life. And there is a genetic component to it - my mother had an undiagnosed IBD...