How can you get off meds?

Sabine,

Hi and welcome to Healingwell. I will tell you my personal opinion and share from my own personal experiences. First off I believe that you should consider the meds and the diets as complementary of eachother. I personally do not believe any person with IBD should ever be without meds. While you are busy getting on with your life, the Crohns (IBD) in my case is always still in there doing it damage on a microscopic level. I do not use the SCD diet, but I live on a low residue diet all the time, and that works well for ME. I once enjoyed a long remission med free, but my remission ended very badly as I had to have a emergency resection because I was completely obstructed. Also because I had been on no meds before, it took a very longtime for my Crohns to get back under control. I was miserable for years. I am now in remission again and successfully maintained only on Asacol. I will never be without medications again. I would hate for your son to learn the hard way like I did.

You might also want to visit our UC board, and ask them what their experiences have been. I know with UC somethings are a little different than they are with Crohns.

Good luck!
Gail*Nanners*

sabine1 said...
  My question is this:  if you are on medication and following the SCD, how can you know when to go off the meds? 

You don't know.  Does he like to gamble?  :)

I wouldn't go off of the medication. That's there to be, as Nanners said, a complement to the diet. Medication prevents the disease from working its horrors in your system. A better diet helps, but it just doesn't do what the medication can.

I would highly recommend probiotics like VSL#3, Culturelle, or Align (this one helped me tremendously) in tandem with medication and a good diet. Repopulating beneficial bacteria in the gut is vital.

And just for the record, I had a friend with pretty severe UC, but he's stayed on the medication and done really well after a while. He's now a teacher in Japan.

BeeSting said...
I have read about the SCD diet. And learned that there is different things to eat in the first phase, the second and the third. If you don't follow this you may get worse, so there are some people often being in a hurry and consider themselves well enough to skip the boring phase one diet, because it's just chicken broth without any meat or veggies, besides, it's really restricted in that phase, so they go directly to phase 2 or even phase 3. Doing so will lead to increased diarrea / blood, a lot of pain and it takes longer time to repair the damages that's done.
Well, this is just my opinion, I am not saying any of you did this, but we always want a quick fix and being better asap.



Rider Fan, I am considering to avoid gluten and dairy. For how long time have you been doing that? How does it work? Thanks in advance for an answer!

I'm not convinced that it helps much.  I haven't been too adventurous, but I think the dairy (low lactose and with taking Lactaids) bothers me more than the gluten which would seem to contradict the SCD diet theory.  I've started to eat some gluten after a year of avoiding it to help me gain some weight.

In any case, it was no cure all as I still had to go on Humira, which has helped me tremendously the past 8 months.

But I encourage you to try it, it won't hurt you.  Good luck!

in my opinion, and this is just an opinion, i think doing a diet while on medication is a good idea. I've been on strict SCD diet for 6 months now along with being on Remicade. I'm a medical student so I've actually assisted in operations on Crohn's patients and it really freaked me out when I was diagnosed a couple years ago.

I will do anything it takes to avoid surgery and to be honest I don't know if diet is an effective prophylaxis, but I prefer to believe this for my own peace of mind. I've read a good amount of books and studies (Breaking the Vicious Cycle, Life without Bread, Dr. Haas original Celiac book, The Stone Age Diet, elemental diet studies, etc) have come to the conclusion that it helps long term.

I think if you're in really bad shape though, you can't afford to cut out food groups or you will whither away into nothing. If your disease isn't too bad and can muster up the strength to try it, then it's worth it. For example I have moderate Crohn's colitis and had a pretty bad flare 6 months ago but it wasn't so bad that I had to get hospitalized.

I have personally experienced much improvement, but of course the confounder is Remicade. I am also taking acidophilus probiotic and boswellia (I stopped taking asacol because it contains lactose). I have about 2 bowel movements per day which are semisolid, no other symptoms. Now as far as getting off medication, I think you must have a sustained period of absolute perfection before you even consider it, probably a few years. If I notice that my stools become absolutely solid and remain that way for a couple of years, then I will try to get off of Remicade.

Of course there are examples of people who have gotten off of meds then had a flare then surgery, etc. I don't think this should discourage you from trying to get off of the meds. Remember that many people have gotten off meds and are doing just fine. That is my goal, but I acknowledge that this might not be possible.

My one recommendation, based on my readings, is that you have to do these diets for a long time. In Breaking the Vicious Cycle it says that you should try it for a month and see if there is any improvement before you decide to throw in the towel. But what is improvement? The improvement can be minor or major. The recommendation is deliberately vague. I didn't see much improvement in the first month but I did at about 4-5 months. It also depends where your disease is. Mine is mostly in the colon so it's going to take a long time. Try to make a commitment of at least 2 years if you can.