The Specific Carbohydrate Diet, other questions

I am sure that this has been brought up before on this forum but I am a newbie and I thought I would start a new thread.

I have relatively recently been diagnosed with Ulcerative Colitis (September 2008).

My initial symptoms started in July, with on and off again diarrhea, finally gave in and saw my Primary Care as it was more on and less off and blood started to show up. She recommended I see a GI specialist but the one she suggested was booked up at that point for about 3 months. A couple of weeks later, I couldn't take it anymore, pain in my belly, always bloody diarrhea. I spent a week in the hospital, discharged when I was really no better on Prednisone 40 mgs 2 x per day and Asacol 800 mg 3 x per day and melasamine enemas. I went back to the hospital a week later as I continued to get worse.

They told me that I was basically headed to the Operating Room. Finally someone suggested Remicaide. Per my GI doctor, Remicaide "saved my colon" Well, I did the initial infusion as an inpatient, then 2 weeks later, and the whole ramp-up thing. I was doing well. A little over 2 months ago I was at the 6 week mark and due for another infusion at the 8 week mark. I started bleeding again, this time it was not diarrhea, but blood on the outside of my stool and on the paper when I wiped. At the same time I got a sinus infection. My Primary Care prescribed a Z-pack.

Well, with the Z-pack, my sinus infection went away, and so did the blood in my stool. I mentioned this to my GI doc and he said it just so decided to clear up on its own. I found that hard to believe. All the meds in the world didn't clear it up the previous time and then it just went away on its own?...has anyone else had antibiotics and a flare ended as a result?

Well, this time about 3 weeks ago another "flare" at the 6 week mark of my Remicaide. This time bloody diarrhea. My doctor got me in for an infusion early (only by about 2 days was as quick as he could get me in). His plan then was to get me on an every 6 weeks schedule. Diarrhea went away but I am still bleeding. Now he told me to start taking Asacol 1200 mgs 3 x per day. He wants me to meet with the colorectal surgeon. I made an appointment for a second opinion, one week from tomorrow.

My questions to the group are:
1. Has anyone tried the Specific Carbohydrate Diet. (GI doc says diet doesn't matter, I find it hard to believe after all that I've read online and common sense, what you eat travels through your colon.)
2. Has anyone been on Remicaide every 6 weeks? I can't seem to find any info about doing that.
3. Would you give up this early and see the surgeon? From what I read, people live on different meds and have good times and bad times for years without a colectomy.

I am just so frustrated!

Jen

Changing my diet was the ONLY thing that helped me get well again. By well, I mean no symptoms and no meds. I also took natural antifungals and still take probiotics. My doctors told me diet would not help me. I decided after 8 years of not getting "well" taking their drugs, to at least give it a try. Best decision I ever made.

Saying all that, I know there are others that have tried a diet change, but has not helped. It is a lifestyle change, not a diet change. I can never go back to the way I used to eat, and frankly, I don't wish to, if it means my symptoms could come back. You can not limit/avoid random foods to see what effects it has. There is a science behind the SCD and the antifungal diet. If you have an underlying fungal/yeast condition, it will help you. The best/fastest way to know is to experiment. All the tests I had never indicated I had such a condition, yet it was an antifungal diet that gave me my life back.

An FYI, ...antibiotics, birth control pills and exposure to moldy environment/water damaged environment are good precursors to a fungal/yeast overgrowth, even having been exposed/taken years ago.

It is so good to hear that some people have their disease under control. It gives me hope. I am going to check into these books and diet.

I was on the specific carbohydrate diet two times. I followed it to a t. The first time I was on it it worked fairly well. I went from having a bm every 1 to 2 hours to every 8 or 9 hours. The second time I tried it, I didn't really have any success with it even though I was still following it very strictly. However, I wasn't nearly as sick the second time I tried it.

I did do Remicade every six weeks instead of eight. I switched to every six weeks because I lost response to the drug. I didn't experience any problems switching to every six weeks, but I didn't really get any additional response either.

Here's the deal with the SCD: in my experience you can't necessarily "follow it to a t." There may be allowable foods on the diet that are problematic for YOU and these have to be eliminated. A lot of folks also dive into the diet and eat a lot of fibrous veggies and nut flour baked goods. These things, while approved for the diet, are not well tolerated by someone who's in a bad flare and has alot of pain and inflammation going on. The book is pretty simplistic and some of the diet's proponents have been known to be pretty zealous about strict and total adherence to the diet. The message is, "If it's not working for you, you must be cheating." I think if it's not working for you, a little tweaking and personal adaptation is going to be needed. I also strongly feel most people need probiotics and other healing supplements in combination with the diet to see the best results.

Dear Jen,
GI docs will not tell u to follow a diet unless they are open to alternative healing or some have seen that it worked for their patients.
check out this site what this doctor says about SCD: http://www.drhoffman.com/page.cfm/169
this is from a super knowledgeable reputable doctor (he has a radio show every nite 710am at 11pm eastern time.)
check out that site about other things that he says on IBD (more links on the right side of the page).

i myself is a physician in my residency on Long Island and am following the SCD. The book for the Specific Carb Diet is called Breaking the Vicious Cycle. There are MANY MANY pple that swear by the diet. I started the diet after the worst flare i've had where i needed to get many transfusions after 2 hospitalizations and 30 pound weightloss.
Since starting the diet (about 2-3 weeks into it) i've been feeling well and seem to be in remission, I am taking meds as well, and supplements started to gain the weight back... u should
I am not trying to sell u this diet, but before u decide to have the surgery perhaps u should give other things a try. seems that u only found out that u have the dz not long ago, so u havent had much time to learn the dz in UR body.
You are right to an extent when u said that what u eat travels through ur colon,
although most of the absorbtion takes place in the small intestine (as we know it) however there are many bacteria which proliferate in the guts and travel throughout ur body influencing ur immune system.
i also agree with princesa that each person is different, and i would be curious to know how long she has followed the diet.
i wish u very good health
Peace
Ghena
UC

Hey everyone!

Thanks for your replies. I've got some good ideas of books and web sites to check out! I am definately not ready for surgery yet as I don't think that I have exhausted all of my other options yet.

I have made an apt with another GI doc for Friday and I am going to talk to him to see what he thinks about meds / diet / probiotics, etc. Hopefully he has more experience dealing with UC patients that are looking at other options. My current doc's comments just keep running through my mind and there just has to be something else!

Thanks again,

Jen

Hey-

You might want to try eliminating things from your diet and then working up from there to see if you have any intolerances. Keeping a food journal is also a good idea.

I know for me, I seem to not be able to tolerate large amounts of fructose, artificial sweeteners, caffeine, alcohol, fried food, or large amounts of insoluble fiber. A lot of UC'ers also have problems with lactose, fortunately for me I am not one of them.

Barring that there are a number of other diets besides the SCD that UC patients have used successfully.