Crohns/Colitis and minyan? Update page 3

amother

↑ Seafoam ↓

Thu, Apr 28 2022, 9:07 pm

https://youtu.be/GCVrAuTnVIw

This is a link to a Dr speaking about scd...(since this speech studies have been conducted on it, and many more doctors have gotten on board. But at the time of the speech he was one of the pioneers to advocate for it as treatment)

Chana Miriam S

Thu, Apr 28 2022, 9:51 pm

amother [ OP ] wrote:

And no milk for coffee?
No sugar at all?
No starches or grains? It sounds pretty difficult

I know a number of people who have completely resolved issues including ulcerative colitis by eating this way. My mother has IBS and a whole bunch of things she used to not be able to eat she can now. E was strict for a long while and then less so. Seems like the healing is holding though.

Not_in_my_town

Thu, Apr 28 2022, 10:05 pm

amother [ OP ] wrote:

Because how on earth is he supposed to function without any coffee (he’s not drinking black coffee, no way), sugar and flour? That sounds like a very very hard diet!
I myself eat pretty healthfully but I need a snack, a sugar pick me up occasionally.

I was on the SCD diet for a half a year though I don't have digestive illness, BH. (Thought I did but was a false alarm.) It's restrictive but doable with the right support.

The Wellbee's cashew muffins kept me going when I needed something carby. They're expensive, but delicious and made me feel I had a mezonos.

Check out their webpage. It's a heimishe family in Monsey who runs the store.

https://www.wellbees.com/ready......html

amother

Brickred

Thu, Apr 28 2022, 10:10 pm

I think the idea of the SCD diet sounds overwhelming but once you start, you’ll realize how doable it is. It’s crazy that the doctors still say diet won’t help…because clearly clearly it does for so many people. Unfortunately there are people who have surgery and still have symptoms afterwards so it’s not even a guarantee that surgery will work every time. Do you think it might help to suggest that he tries the diet just for 2-4 weeks and then decide after that? Instead of viewing it as a majorly long term thing? Because if he just starts it and sees that he feels better on it, that’ll probably help motivate him to keep it up. I believe there’s many threads here with SCD food/recipe ideas. Maybe spend some time reading them so you can feel more comfortable about it and then you can be more encouraging to him when you mention it again.

I actually think the SCD diet is less restrictive than many other diets out there. There’s so many food you can eat, you just have to learn how to eat a little differently.

Hatzlacha with whatever he decides to do. Refuah shelaima

amother

↑ Mintgreen ↓

Fri, Apr 29 2022, 3:56 am

I am on scd for a while now. My Dr did support the diet as long as we monitor the inflammation levels. Bhbh nearly all scaring and inflammation is gone by now. It is hard but doable. But you do need to be committed. Otherwise its not gonna work. Also even ppl with surgery aren't cured all the way. It can come back.

amother

↑ OP ↓

Fri, Apr 29 2022, 4:30 am

amother [ Mintgreen ] wrote:

Can you cheat even a tiny drop or not a morsel?

Can you post sample daily menu and Shabbos menu? What do you do for challah?

amother

↑ Slateblue ↓

Fri, Apr 29 2022, 4:50 am

My son was diagnosed with Crohn's 6 years ago when he was almost 17. No way no how would he consider doing any diet. He has been completely symptom free all these years with medication and some supplements. He too could not have a complete colonoscopy because of severe inflammation. His intestines are now perfect for years. Please consider Dr. Marla Dubinsky at the IBD center at Mt. Sinai in NYC. She is considered #1 in pediatric IBD and we were thrilled with her expertise. My son sees one of her attendings now because he really doesn't need her care any more, but she supervises everything. It was explained to me that how Crohn's is treated in the beginning makes a huge difference for future prognosis. My son has a completely normal life BH and I really believe yours can too!

amother

↑ OP ↓

Fri, Apr 29 2022, 5:10 am

amother [ Slateblue ] wrote:

This is for my husband. Is she only pediatric? Is there any way I can contact you?

amother

↑ Mintgreen ↓

Fri, Apr 29 2022, 5:22 am

amother [ OP ] wrote:

Can you cheat even a tiny drop or not a morsel?

Can you post sample daily menu and Shabbos menu? What do you do for challah?

If you cheat you need to start from the initial stage again. I would suggest buying the book how to break the vicious cycle and contacting Mrs Weiss if your interested in guidance.

I don't wash by hamotzie. Per my rav.

amother

↑ Slateblue ↓

Fri, Apr 29 2022, 6:12 am

Sorry I did not start at the beginning of the thread. Yes, Dr. Dubinsky is only pediatric. But I can also suggest Aloe pills available through Rebetzin Fisher in Monsey. My son took them for a year until we were sure he was stable. They seem to provide great relief to many. Reb Fisher number is 8454261046. I encourage you to look for the best doctor from a major teaching hospital. Those doctors create the studies and you will have access to the best and latest treatments. I do understand very well the aversion to biologics. But quality of life is life itself.

amother

Saddlebrown ↓

Fri, Apr 29 2022, 6:23 am

amother [ OP ] wrote:

This is what happened. He found a local dr but can’t even do colonoscopy because of inflammation and because of scarring. Tried a new med that didn’t help, now trying a more severe medication but after that surgery may be the next step.
He is very down and scared of ch”v the worst. Can anyone give chizuk as well as practical advice?

I know that everyone has been telling you to do the scd, and that’s actually really bothering me because pushing it down your throat isn’t helpful.
My father has crohns, did scd for a few years at one point. It wasn’t a magic fix….
He’s had a few surgeries- the last ones were with dr. Remzi at nyu.
It’s rough

amother

↑ OP ↓

Fri, Apr 29 2022, 6:40 am

amother [ Slateblue ] wrote:

Did Dubinsky recommend aloe?

amother

Apricot ↓

Fri, Apr 29 2022, 6:42 am

A very close friend of mine suffered with UC for years. She tried everything, including the SCD diet. Unfortunately it did NOT help her. She was very pumped and very committed to the diet and followed it stringently.

Bottom line is, it's believed that there are many different sub-types of UC (maybe also Crohn's) and not all treatments work for all types.

At a point where she was in and out of the hospital and facing radical surgery (colostomy), she tried something that she was unable to try before then, because her insurance would not cover it until she tried everything else. A biologic infusion every 6 weeks. B"h it turned out to be the magic bullet. She can now eat any regular food and live a normal life and avoided surgery.

amother

↑ OP ↓

Fri, Apr 29 2022, 6:44 am

amother [ Apricot ] wrote:

What is biologic infusion?

Anyone have exp with remicade?

amother

↑ Mintgreen ↓

Fri, Apr 29 2022, 7:06 am

amother [ OP ] wrote:

What is biologic infusion?

Anyone have exp with remicade?

Biologic meds are given through injection or and infusion. Remicade is 1 type of Biologic.

Scd doesn't work for everyone. Absolutely. Some ppl have tried it for 6 months with no relief. Others have tried it and gotten off biologics, avoided major irreversible surgery etc.

amother

↑ Slateblue ↓

Fri, Apr 29 2022, 7:16 am

Dr. Dubinsky did not recommend Aloe. Rabbi Schlesinger in Monsey recommended we reach out to Rebitzen Fisher. My son has no symptoms BH so we discontinued. My son does take Gluterase every time he eats wheat and another supplement called UltraInflamix. I am not recommending it because I really have no idea if it helps or not. My son is treated via telehealth by a genetic nutritionist Dr. Debbie Altshuler. She is the one who prescribed the Gluterase and UltraInflamix. I can't say for sure if it works or not but to us it is worth the $ in case it is. I mentioned the Aloe because I know for a fact that it helps ppl with their symptoms. The Gluterase and UltraInflamix supposedly heal. But I cant know for sure because my son also used Humira. So I dont feel comfortable recommending. Dr. Dubinsky does not think it makes a difference but her attending who currently treats my son is also a nutritionist and she's into it. My son agrees to take it so why not. The SCD diet was completely out of the question for him. Maybe when he is older and more mature...

amother

↑ Slateblue ↓

Fri, Apr 29 2022, 7:23 am

My son is on Humira because self injecting every other week was easier for him than going in for infusions. At the time he began medications the doctors were not sure Stelara worked for the small bowel. Now they know it does but there is no point in switching him. Humira is only a problem if taken with 6mp which is never (or should never) be prescribed any more. Humira used alone has the exact same safety as Remicade and Stelara. Just in case anyone needs this info...

amother

↑ OP ↓

Fri, Apr 29 2022, 8:16 am

amother [ Slateblue ] wrote:

Why do you say 6mp should never be prescribed anymore?