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I wanted to start with a whole introduction. But let me go straight to the point!
You might look at me like crazy, but as far of my research with a few big doctors I would estimate that there is over 1,500 yes! One Thousand Five Hundred people in Williamsburg itself are suffering with it!!! There are over 300 people in Kiryas Joel. Can anyone explain me why when someone gets diagnosed he has nowhere where to go & ask for help???
More details to follow!!!
Sure he (or she) has where to go – all the groups and organizations promoting SCD, for starters.
There are also numerous support groups, on line and in real life, for IBD.
Presumably one got such a dx from his/her GI; what does the GI have to say? (And how does one find a GI? By talking to people with IBD, organizations such as ECHO, etc.)
Yasher koach JCCSG, I believe this group is a good idea. Unfortunately, crohns and colitus are not uncommon among the jewish people. my brother suffered from a severe case of colitis as a teenager in which he was hospitalized for months and had many surgeries including removal of the colon, and he was more recently diagnosed with crohns disease which he is taking medication for. his experience differs from my father who has a relatively manageable case of colitis that is usually controlled by meds and occasionally flares us. i haver witnessed just how extremely debilitating it can be and I support this group and urge people to join online support groups or forums as the value to those afflicted and there families will be immeasurable. I think greater awareness in the jewish world would also help to take away the stigma of speaking about the problem. Refuah shelema to all those you know and anyone else who is suffering
“I am happy to listen, o speak with anyone that has the disease.”
The CR is a perfect place for a forum on IBD. You can use this topic or you can start a new one like they did with diabetes; ie -Diabetes Support Group. The advantage of the CR is that the posters remain anonymous.
For an online community try frumsupport website.
I have crohns for many years and although i dont mind if people know i dont like to advertise it. Every time i go to the doctor i meet many frum people many of whom i know for a long time and didnt know had crohns and usually exchange numbers. Right now im completely healed from the scd diet. There are a few support groups here and in eretz yisroel for the diet. Unfortunately many people with crohns and colitis have never heard about the diet. I personally know many many miracle stories from it.
please let me know where i can get info on the scd diet, would be much appreciated.
Hello again, and thank you JCCSG for your compliment. If you let me know how to reach you, I would gladly correspond with you. I am not prepared to say my name on a public forum such as this, although my friends would all recognize my initials.
I do believe that working with a Doctor that specializes in IBD is the best way to go. Besides having the medical knowledge, they also have the many different experiences that come to them regularly.
Wishing all that are sufferers that they find a cure for this and other disease so that no one has to suffer at all.
For SCD info check out http://www.breakingtheviciouscycle.com . There is also a business called Digestive Wellness with prepared kosher SCD legal food; there are people there who mentor, though it may cost. There are egroups such as longislandscd and kosherscd (sorry I don’t have more details); I’m sure there’s probably a decent yahoo group for general IBD talk.
ECHO might be helpful to find good doctors.
Has anyone heard of a new product for IBS called Dicon ? A friend was saying some very positive things about it, but I asked around and other than this friend, nobody seems to have heard of it?
OP- Are Colon diseases Genetic or can the Colon be improved by substituting changes in ones diet? I guess I am wondering if a Nutrionist could help. Are there CR. Posters that a Nutrionist or other Alternative Treatments helped their Colon malady?
True, having a chronic condition might affect a shidduch, but don’t keep it a secret. In the end everything comes out and the party lied to will probably think: “if that information was witheld what other information is being witheld?” I’ve seen this time and time again with couples who found out things about their spouses AFTER they were married. Needless to say the marriages did not work out. Tragic.
@JCCSG: To answer your question, I think because Diabetes is more in the forefront than Crohn’s. We hear/read about it in the mass media almost every single day.
Crohn’s is not very well known and it has to do with the digestive system which is a very delicate subject to even speak about.
I hope I answered your question. If not, let me know.
We just have to be honest with the person we are dating.
Also, no such thing as a small flare-up. It’s like someone saying I have a little diabetes. Either you have it or you don’t.
Some people with crohns have embarrassing symptoms so you can’t compare it to diabetes.
It is not confirmed but it is the opinion of some that IBS is genetic, and then such privacy issues also effect others in the family, and a decision to keep it private is even more significant. As I mentioned in an earlier post, my decision not to go public is more because it will affect the privacy of many others in my family.
ozm, I heard of worse things in crohns patients. But you are right everyone is different and have different side effects.
ozm,
Yes I certainly meant that there are complications which are more embarrassing and more of a problem long term. But you are right Im sure obstructions are much more painful.
This discussion actually surprised me because in my extended family I have a relative with Chrohn’s and 2 with ulcerative colitis (on different sides of the family and one related via marriage — none are related to each other), and none of them keep it secret. They’re not wearing signs or shouting from rooftops, but they’ll mention it casually in conversation, reference their medications or diet restrictions, etc. I never thought of this as something that is kept so secretive until I saw this thread.
As far as shidduchim, 2 are marrying off their kids already and it doesn’t seem to be an issue, and the third has a few siblings who got married after him and it never came up either. Maybe in Chassidishe circles there is still more of a stigma attached to medical conditions, and B”H 2 out of the 3 have very few flare ups, so maybe that is a factor?
http://www.digestivewellness.com has a tape of a gathering for Crohn’s, with doctors and a rav who spoke, from personal experience, but I don’t remember his name.
It’s very simple why people will not talk about it. Talking about digestive disturbances “eckles” many people. Diarrhea is not something you can easily bring up in polite conversation. Emes. I am not trying to be funny. I ahve a relative who suffered since childhood with this and ulcerative colitis until it was correctly diagnosed. He finally had an ileostomy, first with an external pouch, and then with reversed surgery, internal, and B”H he is doing great.
There is this organization called IBDSF (their website is ibdsf.com) and it’s a support foundation for people with Crohn’s and Colitis. Although I don’t, thank G-d have Crohn’s or Colitis, I know people who are part of the organization and it’s really good. They also do Support Groups for kids.
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