My name is Jo and I am a 28 year old IT Project Manager with Crohn’s disease. I have missed weeks of work from cramping, lost tons of weight from failure to keep in nutrients, and have taken a drug called Humira that I developed antibodies to and landed myself in the hospital with dangerous fever levels, about a year after it put me in remission from my disease.
When I was in multiple hospitals during the week of labor day, with LITERALLY 20 doctors throughout the course of the week poking and prodding my belly, the end resolution from one of the top GIs in Chicago was to go on Remicade.
I remember being sick in the hospital, in a total daze, as all the lab coats told me that they were setting me up for Remicade. Throughout the week, my family and I explored a bunch of different options– going back to Humira, doing Remicade, Imuran, other immunosuppressants– but then my sister came across a little cult of people that were die-hard “SCD-ers.” SCD meaning, the specific carbohydrate diet. It starves out bad bacteria and introduces probiotics to fight it. It is a diet that has been researched for over 100 years and has a dedicated following.
What was the breaking point for me was when I was had received my dinner as the doctors were in my room, preparing paperwork for the Remicade infusion. The first hospital I was at was VERY good about what I should eat– gave me gelatin, and lactose and gluten free meals, acknowledging that’s all my weak, inflammed colon could tolerate . The second hospital, a big, respected hospital, claimed to have a nutritionist, and yet, they fed me processed turkey with tons of gravy, mashed potatoes, and I’m not kidding- A BROWNIE.
As the plate rolled in the room, the senior doctor told me to “eat whatever I wanted.” I told him that this wasn’t good food for me and it bothers my tummy. He said after taking Remicade, I could eat anything, no problem.
So- I risk developing more antibodies and infection to take Remicade, PLUS increase chances of lymphoma and other lethal disease, just so I can eat brownies?
No way, man. I refuse. I want to settle down and have kids one day with my husband. I don’t want to have to schedule my life around infusions of mouse protein in my body every two months, and take off work to do it. I want to continue be a successful manager. I want to my life without drugs. So why not try SCD?
I told the lab coats I didn’t want the infusion. I went home the next morning, and they made me sign a waiver.
I have been on SCD for am month and have tapered down from 120mgs of preds to 15. I have NORMAL inflammation levels and ALL my blood work results and diet decisions posted. In August, my GI said I had the most inflammed colon he's ever seen!! Now, I'm almost perfect and have had hard poops- 2 weeks into the diet, after MONTHS of diarrhea.
I showed this all to the lab coats and they told me that there's a 70% chance I'm gonna re-flare, but I don't care. There's also a chance that I'll develop antibodies to Remicade too, right? AND this is a diet, so I don't have to worry about lymphoma, psiriasis, or pancreatitis 20 years down the road.
I've been working with 3 doctors in support of my approach: an infectious disease specialist, a family doctor, and a GI, and here are the results so far from my experiment: http://thescdexperiment.com/results/. Really, I'm making the site to chronicle my experience and be totally honest as to whether or not the diet is working to get me in remission.
does anyone have feedback about this diet?? It's really working for me now, but as with any treatment option, I'm really scared about what my future is holding in store for me. ANY feedback would be appreciated. And thanks to all for the support, as I could potentially be conducting a very stupid experiment-- but the results thus far have been insanely positive.
When I was in multiple hospitals during the week of labor day, with LITERALLY 20 doctors throughout the course of the week poking and prodding my belly, the end resolution from one of the top GIs in Chicago was to go on Remicade.
I remember being sick in the hospital, in a total daze, as all the lab coats told me that they were setting me up for Remicade. Throughout the week, my family and I explored a bunch of different options– going back to Humira, doing Remicade, Imuran, other immunosuppressants– but then my sister came across a little cult of people that were die-hard “SCD-ers.” SCD meaning, the specific carbohydrate diet. It starves out bad bacteria and introduces probiotics to fight it. It is a diet that has been researched for over 100 years and has a dedicated following.
What was the breaking point for me was when I was had received my dinner as the doctors were in my room, preparing paperwork for the Remicade infusion. The first hospital I was at was VERY good about what I should eat– gave me gelatin, and lactose and gluten free meals, acknowledging that’s all my weak, inflammed colon could tolerate . The second hospital, a big, respected hospital, claimed to have a nutritionist, and yet, they fed me processed turkey with tons of gravy, mashed potatoes, and I’m not kidding- A BROWNIE.
As the plate rolled in the room, the senior doctor told me to “eat whatever I wanted.” I told him that this wasn’t good food for me and it bothers my tummy. He said after taking Remicade, I could eat anything, no problem.
So- I risk developing more antibodies and infection to take Remicade, PLUS increase chances of lymphoma and other lethal disease, just so I can eat brownies?
No way, man. I refuse. I want to settle down and have kids one day with my husband. I don’t want to have to schedule my life around infusions of mouse protein in my body every two months, and take off work to do it. I want to continue be a successful manager. I want to my life without drugs. So why not try SCD?
I told the lab coats I didn’t want the infusion. I went home the next morning, and they made me sign a waiver.
I have been on SCD for am month and have tapered down from 120mgs of preds to 15. I have NORMAL inflammation levels and ALL my blood work results and diet decisions posted. In August, my GI said I had the most inflammed colon he's ever seen!! Now, I'm almost perfect and have had hard poops- 2 weeks into the diet, after MONTHS of diarrhea.
I showed this all to the lab coats and they told me that there's a 70% chance I'm gonna re-flare, but I don't care. There's also a chance that I'll develop antibodies to Remicade too, right? AND this is a diet, so I don't have to worry about lymphoma, psiriasis, or pancreatitis 20 years down the road.
I've been working with 3 doctors in support of my approach: an infectious disease specialist, a family doctor, and a GI, and here are the results so far from my experiment: http://thescdexperiment.com/results/. Really, I'm making the site to chronicle my experience and be totally honest as to whether or not the diet is working to get me in remission.
does anyone have feedback about this diet?? It's really working for me now, but as with any treatment option, I'm really scared about what my future is holding in store for me. ANY feedback would be appreciated. And thanks to all for the support, as I could potentially be conducting a very stupid experiment-- but the results thus far have been insanely positive.
