Crohns/Colitis and minyan? Update page 3

↑ Jdoe

Sun, Dec 27 2020, 2:03 pm

amother [ OP ] wrote:

I called around and was told there's no one decent near where we live, the city is our best option.

SCD- no, sadly he is not willing to try it.

If I may, try this (idk where you live so this may be of help).
There are many gb crohns groups and local chapters. Search for one, if you're on FB and ask for recommendations. Given the severity and non-visiable aspect of crohns, the support groups are aften very effective and place for support.

amother

Papaya ↓

Sun, Dec 27 2020, 2:13 pm

I have collitis/ proctitis.
If your husband was offered suppositories it sounds like he may have a similar type to me.
I used to use just mesalamine suppositories, but then had a severe exacerbation, and my excellent doctor put me on Apriso, which is a slow release mesalamine. It is considered quite a benign medication. It's pricey, but it's possible to find discount cards for it, and there will soon be a generic version.
I am symptom free while on it.

It isn't a good idea to leave IBD unchecked, since inflammation can be damaging.
Push your husband to see a different GI. There must be someone good he can see without having to go to the city.

amother

↑ Papaya

Sun, Dec 27 2020, 2:18 pm

Additionally, based on my personal research, it seems to make sense to go on the scd or similar diet while on the medication, so you can get into remission, and then hopefully wean off of it, with your doctor's guidance.

https://www.umassmed.edu/nutrition/ibd/ibdaid

amother

↑ OP ↓

Thu, Apr 28 2022, 11:22 pm

amother [ Papaya ] 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?

amother

↑ OP ↓

Thu, Apr 28 2022, 11:34 pm

amother [ Mintgreen ] wrote:

Did you ever try scd diet the proper way?

He never did and I don’t know if he’s able to- I don’t know if he’s capable. He’s not interested.

amother

↑ OP ↓

Thu, Apr 28 2022, 11:37 pm

amother [ Mintgreen ] wrote:

I feel terrible that he's a great risk of surgery but wouldn't try a diet. I'm in touch with so many who avoid meds and surgery through scd. It's absolutely amazing

Can it help with scarring that already happened?

amother

↑ Seafoam ↓

Thu, Apr 28 2022, 11:43 pm

amother [ Mintgreen ] wrote:

Did you ever try scd diet the proper way?

That is a real real shame.
I know a young man who had no success with any medications. His only option left was surgery, and he even had the date set up...until he decided to humor the person who had been begging him to try SCD, and went on the diet. He saw results, postponed the surgery, saw more and more improvement and has never looked back. Its a few years later and he is on the diet basically symptom free, no meds no surgery

amother

↑ OP ↓

Thu, Apr 28 2022, 11:45 pm

amother [ Seafoam ] wrote:

When you say he saw results does that mean the colonoscopy showed the inflammation and scarring or whatever else had healed?

Or just that he didn’t have symptoms?

Also, the diet sounds very extreme. I don’t understand how it’s possible to function on such a diet.

amother

↑ Seafoam ↓

Thu, Apr 28 2022, 11:45 pm

amother [ OP ] wrote:

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

It is a lot easier to do this diet now than ot wouldve been even 10 years ago. Lots more products, recipes and support available nowadays.

I understand it feels difficult and overwhelming...but im puzzled why its not an option when your only other choice is surgery...

amother

↑ OP ↓

Thu, Apr 28 2022, 11:46 pm

amother [ Seafoam ] 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.

amother

↑ Seafoam ↓

Thu, Apr 28 2022, 11:49 pm

amother [ OP ] wrote:

Not just symptoms, colonoscopy and all labs showed steady improvement.

I have a friend who also did this diet for crohns-she wasnt facing surgery but she was on strong medications that were giving her side effects. She did the diet strictly at a point where her colon had severe inflammation, constantly bleeding...she saw serious improvement in symptoms, kept to the diet and weaned off her meds. Her colonoscopy 2 years later showed zero evidence of crohns. No inflammation whatsoever. The doctors said the only way they wouldve known she has crohns is by her history.

Btw this isnt some quack diet. It was developed by a doctor and scientist many years ago, but only became popular recently. It is science based, and recently was found very effective by Dr Susskind who did a research study on it for children, in seattle childrens hospital. Many doctors are now using it as treatment

amother

↑ Seafoam ↓

Thu, Apr 28 2022, 11:56 pm

amother [ OP ] wrote:

Coffee is sweetened with honey. Almond milk does the job. No sugar for anything, only honey. Nut flours and coconut flour for flours.

I didnt say ts easy. But many many people are on it, my 11 year old daughter included, and you get used to it...

Again, I get your hesitation. Really. I myself was FREAKED OUT at the idea. But youre facing surgery.(and possibly future surgeries ch"v)..if you were told by a fortune teller that if he went on the diet it would really help him and turn his life around,..you /he would still rather not do the diet? Of the 2 options, does he consider surgery better/easier for him?

amother

Cerise ↓

Thu, Apr 28 2022, 11:57 pm

amother [ OP ] wrote:

It's very very doable. My husband has been on this diet for years and never felt better. If he fears the worst, I have a hard time understanding why he went give this diet a 30 day trial. It's not a death sentence and it certainly can't make things worse than they stand now.
You can be your husband's cheerleader and have faith in his ability to follow through with the diet, for just one month. I don't want to criticize you because I was once upon a time in your place. I just think it would help a lot if you can drop the skepticism and have faith in your dh and in this diet. Yes, it's completely possible to not have coffee with sugar or milk, yes it's possible to not have flour or a sugar Laden treat. For 30 days for sure. You can reevaluate at that point.
I strongly encourage you to reach out and speak to more people about the diet.

amother

↑ OP ↓

Thu, Apr 28 2022, 11:58 pm

It’s not me, it’s him. Surgery sounds awful but I’m just not sure she has what it takes to do this diet. I’ll bring it up to him but especially because all the doctors keep saying diet doesn’t matter, I doubt he’ll go for it.

amother

↑ Seafoam ↓

Fri, Apr 29 2022, 12:00 am

amother [ OP ] wrote:

I myself eat pretty healthfully but I need a snack, a sugar pick me up occasionally.

Off the top of my head-my daughter's favorite things to snack on:
Honey candies
Marshmallows
Cheese cake
Reeses cups
Doughnuts with frosting
Cucpakes with peanut butter frosting
Whipped cream (made to yogurt and whipped up)
Ice cream
Meringue kisses
Whoopie pie cookies (marshmallow cream in between 2 cookies)
Homemade gummy bears
Banana cake
Cinnamon bun muffins

amother

↑ Seafoam ↓

Fri, Apr 29 2022, 12:03 am

amother [ OP ] wrote:

I understand.
He cant do it unless hes really all in, of his own interest.
Im sorry hes going through this...its just saddening because so many people have been helped by this.
If you google it, look on youtube for doctors speaking about it, there are thousand sand thousands of testimonials on facebook...
If youre in monsey, brooklyn or I think lakewood as well, you can reach out to scd gemachs (they make food at cost price)for testimonials from local people..

Hatzlacha with whatever you do!