I’m sorry you are having such a difficult time.

In the few instances I’ve read about people’s experiences with fecal transplant, it’s been a mixed bag. Some have great responses, others are disappointed. I hope it works like crazy for you.

-Paul

First of all let me say that I’m sorry that your family is dealing with this difficult disease. A child should never have to grow up so fast and it’s not so easy for an adult either.

Thank you for taking the time to send me such kind words. It is quite a dramatic shift to move from the victim of your body to the director of it. As you say, it’s not without its challenges, but the liberation can have quite an impact.

I hope your daughter and husband continue to do well and enjoy life to the fullest.

Cheers,
Paul

I have a 17 year old daughter with Crohn’s Disease and I suspect my husband has a milder case of it too. My daughter was diagnosed at 11 and did well on medication for several years. The last 2-3 years have been difficult with flare ups and prednisone. She and I both hate what the prednisone does to her. Her pediatric gastroenterologist had been suggesting this diet for a couple of years but we were reluctant to try it because of the major lifestyle change. After the last flare up which occurred last fall, I made my mind up and committed myself to the SCD. We began the diet in January of this year. I will admit that it is difficult at times with all the food preparation, but how empowered we feel to finally be able to do something and take control of the disease instead of the disease controlling our lives. She has had her days when she is angry and hates the diet but admits that she feels so much better and has more energy than ever. When she has a bad day, craving all the wrong things, I stay positive and remind her of how awful she felt on the prednisone. I tell her it is ultimately her choice, and that she can choose a life of illness and prednisone, and possible surgery, or she can choose a life of healthy eating and feeling good and doing what ever she chooses in life. She always chooses SCD in the end. Thank you for your website. It is a very useful and valuable tool when new to this diet. It is so nice to know there are lots of people out there living happily and healthy on the SCD. People like yourself make it so much easier.

Michelle

You’re welcome. I made them for myself and figured other peoples might like them as well.

-Paul

Thanks again,
Karen

I’m sorry, but I am unfamiliar with it’s use.

-Paul

I would classify my problem as IBD/candida control problem. I am trying the diet and have also been using supplements, etc. for several years and everything helps. My question is, have you ever tried or do you have any knowledge of HCL (Hydrochloric Acid) to swing gut flora/help digestion? How would it affect probiotic supplementation?

thanks, Elaine

Sorry to hear your son is dealing with this.

Yes, I continue with the diet. If I go off it, I pay for it with more trips to the restroom.

I dont’ think the “it’s too hard and is poor quality of life” attitude is uncommon among doctors or even your peers. I just happen to think it’s wrong. Drugs have their place, but they are not without serious risks. Not to mention that quality of life is highly subjective.

When I imagine myself in your position, my heart aches for you. My children are still young so I don’t have any teenager experience, but I’m guessing that it would be impossible to get your son on strict SCD unless he was properly motivated and totally on board as if it were his idea. Unless you can totally lock him down and watch him every minute of every day, I don’t imagine that you could make him do this. And that doesn’t consider the resentment lockdown would engender.

I’m sure your son is mad too. As you can appreciate, this is tough thing for a well adjusted adult so it must be doubly hard for a teenager. Not to mention all of this is embarrassing to talk about. I suppose he feels like a victim and all of his options are distasteful to him.

If you can’t get your son to feel the same way you do about the SCD, perhaps you can persuade your doctor to giving low dose naltrexone (LDN) a try. I don’t know what the success rate it, but many are doing very well on it and it seems to be a less serious drug. See this site for a primer: http://www.lowdosenaltrexone.org. You can also see the comment / reply by Rob K on my FAQ page: http://eatingscd.com/faq/

Come to think of it, if it’s possible for you to find a more open-minded doctor I’d encourage you to do so. Perhaps if you rephrase the SCD as a way to give him a better quality of life versus calling it a treatment, you’d get better cooperation from a doctor.

Also take a look at the conversations I’ve had with other mom’s about their kids and SCD on this page: http://eatingscd.com/faq/ . Look for Julie and Carol.

Cheers,
Paul

I just took my son (17,dx CD Aug. 09) to his follow-up GI appointment and was told that the 6MP isn’t working and he’ll need to go on Remicade. This, after I told them that he just started the diet this past Sunday and was having some success with his symptoms reducing, etc. They didn’t even have a response to that other than to say that “people get on the web and give their testimony about how well the diet worked for them and then they relapse but you don’t hear about that.” So, I read you testimony, you are still here promoting the diet, so I assume it continues to work for you. Would that be correct?
Also, they continued to say things in front of my son to imply that the diet was just too hard to maintain and that he needs to have a better quality of life. After I left there I thought, “What life can this kid have on Remicade?!” Now, my son would rather be on the drug than work his way through the diet-he says he just can’t do it. He feels too much like everything is being taken from him. I kept telling him how good and healthy the food is and he says that I don’t understand what he means. I do. He’s just not willing to sacrifice for his health…well, I guess what he will be doing IS sacrificing his health if he insists on going on this drug!
I would appreciate any thoughts you might have.

Thanks,
Sherry