Crohn's disease - please help!

amother

Thu, Dec 08 2022, 6:11 pm

Hi all, I was just diagnosed with Crohn's after a looong time of unexplained suffering. Im overwhelmed and don't really know where to start - the doc gave me a whole loads of meds but didn't explain much and didn't tell me anything about a preferred diet. Does anyone know of a good doctor in NY? Are there specialist for this disease? Has anyone taken a natural approach and managed to get it under control? Anything else to suggest/share?
Thank you!!

aworkinprogress

Thu, Dec 08 2022, 7:49 pm

Hugs OP. I've had Crohn's for 7 years and still remember vividly how hard it was before and when I was diagnosed. Hopefully now that you know the source of your suffering the treatment will help and you will feel better. Feel free to pm me with any questions or to be connected to a support group where you will have a bunch of fellow 'crohnies' to hold your hand and support you. Mr. Yoely Drummer runs JCCSG (Jewish Crohn's colitis support group) 718-635-2274, he can recommend drs and he's very knowledgeable.
Regarding diet- there is little proof showing that diet can achieve remission. I know of a handful of Crohn's patients who were able to with scd but probably 99% weren't. And the scd diet is brutal to follow.
The only thing that is proven to help is a healthy Mediterranean diet but it is not in place of medication.
That said, medication can be a life saver for those of us with Crohn's and the sooner you take it the more of a chance it will work well. Feel free to reply/ pm me the names of the meds your Dr prescribed. I follow the latest research of Crohn's treatments and I'll be happy to share what I know.

amother

Lightgreen ↓

Thu, Dec 08 2022, 7:59 pm

The diagnosis does seem very scary at first. I remember feeling terrified when my dh was diagnosed. You will be ok Iyh. Hopefully now that you know what it is you'll begin to feel better.

My husband has been on scd for 5 years and is bh fully in remission. I know a bunch of other people who are also following this diet and are doing very well on it.

Dr. James George is in NYC and deals with Crohn's.

Ask away. We're all here to help you out.

amother

Slateblue

Thu, Dec 08 2022, 8:13 pm

aworkinprogress wrote:

Regarding diet- there is little proof showing that diet can achieve remission. I know of a handful of Crohn's patients who were able to with scd but probably 99% weren't. And the scd diet is brutal to follow.

.

Im not here to argue for diet over meds, but I need to interject here. This thinking is very outdated. In the past 10 years there have been many studies looking at the SCD diet (which has been around for at least 40 years) for crohns, with amazing results. It is not a fad wack diet. It was developed by a biochemist and medical doctor, based on the science of the gut microbiome.
Off the top of my head, I know that a Dr Suskind out of Seattle Childrens hospital I believe, did a study on children on scd for crohns, and he has lectured about it to other gastroenterologists.
My daughter's GI actually recommended the SCD diet to us, based on recent medical research she saw, and as difficult as it is, my elementary school aged daughter has been following it for a few years now.
There are also facebooks groups online which have thousand upon thousands of SCD followers and testimonials about how much the diet has helped their disease.
The whatsapp group im on (for jewish women on scd) also has some pretty intense testimony, amazing stories. And Wellbees, a Jewish company that sells kosher SCD diet approved foods nationwide, is doing a thriving business BH, to thousands of people who are being helped by the diet.
Again, not pushing SCD over meds, or anything-they both have their pros and cons-but if diet is a consideration for OP then the facts are that SCD has scientific backing and so many people have beneffited from it.

amother

↑ Lightgreen

Thu, Dec 08 2022, 8:55 pm

amother Slateblue wrote:

Thank you for saying this. My daughter's gi told us she read a lot about Dr. Suskind's research on diet and Crohn's. I can't remember if she said she heard him speak or another doctor who worked with Dr. Suskind. And she said she is all for it, she's seen amazing results for kids who are able to follow the diet.

Curious who your daughter's gi is. Do you mind sharing?