Crohns/Colitis and minyan? Update page 3

amother

↑ OP ↓

Fri, Apr 29 2022, 11:19 am

amother [ Saddlebrown ] wrote:

Dad was on humira and now remicade

How’s the remicade going?
And why should 6mp not be prescribed anymore anyone know?

amother

↑ Slateblue ↓

Fri, Apr 29 2022, 11:22 am

According to Dr. Dubinsky all the research (she did the research herself) concludes that 6mp is a carcinogenic. Humira was originally prescribed in conjunction with 6mp so Humira was thought to be carcinogenic too. Further research showed that it was the 6mp that is the culprit. Those not up on the research still think Humira is carcinogenic. Dr. Dubinsky told me this very clearly 6 years ago. No one should be prescribe 6mp. The chair of gastrointerology at Westchester Hospital told me same. It is well known.

amother

↑ Cerise

Fri, Apr 29 2022, 11:25 am

amother [ OP ] wrote:

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

I don't know the answer to this, but I've actually heard this from 2 different gi doctors so I believe op is not making this up. It's coming from doctors.

amother

↑ Slateblue ↓

Fri, Apr 29 2022, 11:29 am

This is why it is very important to go to the best experts in the field. My son was first diagnosed locally and the GI put him on a medication. As soon as we got to Dr. Dubinsky she took him off and said this med does not work on the small intestine (where my son's ulcer was). The doctor who prescribes that med was board certified and affiliated with the local hospital. But she still did not know the right protocol. And she insisted my son had Crohns based on his CT scan. Dr. Dubinsky explored every possibility first even when she could not perform the colonoscopy due to inflamation. Pleas go to a top expert who is involved in research.

amother

↑ Slateblue ↓

Fri, Apr 29 2022, 11:31 am

amother [ Cerise ] wrote:

I don't know the answer to this, but I've actually heard this from 2 different gi doctors so I believe op is not making this up. It's coming from doctors.

The answer is it causes cancer

amother

↑ OP ↓

Fri, Apr 29 2022, 11:47 am

amother [ Slateblue ] wrote:

The answer is it causes cancer

Weird. His dr just told him to use it together with remicade (he just tried entivyio for a few
Months it didn’t work) but he told her no, he’s allergic to it. Wonder why she would prescribe it.

But I thought it’s used treat cancer, not that it causes cancer.

amother

↑ Slateblue ↓

Fri, Apr 29 2022, 12:16 pm

amother [ Slateblue ] wrote:

Dr. Dubinsky and Dr. Eddie Lebovics (head of GI at Westchester) both told me no 6mp! Please find another doctor!

If Remicade doesnt work, ask about Stelara. Remicade and Humira work through a similar modality. So often if Remicade doesnt do the trick Humira wont either. Stelara works through a different modality. Also, an expert will play with the dosages. Perhaps the dosage prescribe for Remicade does not work for your husband but another protocol would. An expert knows how to "play" with the medicine.

amother

Honey ↓

Fri, Apr 29 2022, 4:43 pm

My husband gets remicade infusions every 8 weeks, he has been 99% symptom free as long as I have known him and for several years beforehand (he was diagnosed as a young teen). He just had a routine colonoscopy and it came out completely clear, b"h. If his symptoms were worse, he would consider the scd diet as long term remicade isn't without its risks but it's working for the last decade or so!

amother

↑ Honey

Fri, Apr 29 2022, 4:45 pm

Also, I am quite surprised that your husband's doctors told him diet has no impact - that's so outdated I wonder if they are top notch in other ways? Even with the remicade my husband still avoids certain things like seeds, nuts, peels and whole wheat (depending on how he's feeling for each one, sometimes he's fine to eat all of them).

amother

↑ Slateblue ↓

Fri, Apr 29 2022, 5:56 pm

amother [ Honey ] wrote:

At Mt. Sinai they have a program to help people who would like to us the SCD diet. But I can't say they push it. The only dietary restrictions my son was given was to try to avoid sugar as much as possible. Sugar is a known inflammatory. My son won't even do that.

amother

↑ OP ↓

Fri, Apr 29 2022, 6:24 pm

amother [ Slateblue ] wrote:

It’s funny because his old dr was at mt Sinai and he never once said anything about diet. He said meds are the only way

amother

↑ Mintgreen

Fri, Apr 29 2022, 6:27 pm

amother [ OP ] wrote:

It’s funny because his old dr was at mt Sinai and he never once said anything about diet. He said meds are the only way

Most Dr's will claim diet cannot heal. I've been too many before my current Dr that supports scd. My previous Dr couldn't believe my colonoscopy I took after 1 year of scd. But he still won't openly say that scd helped. Mount sinai recently brought in a nutritional group or something. Not all Dr's in Mount Sinai group support scd either

amother

↑ Seafoam

Fri, Apr 29 2022, 6:30 pm

amother [ OP ] wrote:

It’s funny because his old dr was at mt Sinai and he never once said anything about diet. He said meds are the only way

Thats very old school way of thinking. Though many GIs are still old school lol.
The ones who follow recent research dont say that anymore.
My daughter's GI (pediatric) actually supported her going on scd, and gave information links to read up on it etc. The doctors in her practice went to a seminar about SCD given by one of the doctors who had done a research study on it, and went with it.

amother

↑ Slateblue ↓

Fri, Apr 29 2022, 6:31 pm

amother [ OP ] wrote:

It’s funny because his old dr was at mt Sinai and he never once said anything about diet. He said meds are the only way

They have special nutritionists at the Susan & Leonard Feinstein IBD Center at Mt. Sinai. Offered to my son when he began as a patient. No one pushed it - especially since he was symptom free. The doctors feel diet helps with symptoms. Also they recommended cutting out sugar to prevent inflammation, avoiding seeds and nuts if patient has active ulcerations and eating things like salmon and turmeric to cut down inflammation. The gastro attending who now mostly treats my son there is herself also a nutritionist and she is very into learning about the supplements my son has been taking. The doctors who have treated my son are into quality of life. If the patient feels his quality of life is negatively affected by dietary restrictions they will not recommend. Several of the ones who my son has seen have IBD themselves so they can really put themselves in the patient's shoes

amother

↑ Slateblue ↓

Fri, Apr 29 2022, 6:48 pm

[quote="amother [ Seafoam ]"]Thats very old school way of thinking. Though many GIs are still old school lol.
The ones who follow recent research dont say that anymore.

Same with prescribing 6mp

amother

↑ OP ↓

Fri, Apr 29 2022, 6:50 pm

[quote="amother [ Slateblue ]"]

amother [ Seafoam ] wrote:

Thats very old school way of thinking. Though many GIs are still old school lol.
The ones who follow recent research dont say that anymore.

Same with prescribing 6mp

Then I’m really going to have to push him to find a new doctor. I wonder if there’s anyone local in NJ or we’ll for need to go to the city.

amother

↑ Slateblue ↓

Fri, Apr 29 2022, 6:57 pm

amother [ OP ] wrote:

Then I’m really going to have to push him to find a new doctor. I wonder if there’s anyone local in NJ or we’ll for need to go to the city.

Go to the city to a research hospital!