Crohns/Colitis and minyan? Update page 3

amother

↑ OP ↓

Fri, Apr 29 2022, 4:01 pm

amother [ Slateblue ] wrote:

Go to the city to a research hospital!

We will for a second opinion of course but I think having a more local doctor will enable him
To be more on top of things.

Logistically it’s hard for him to get to the city. Follow up appointments would require taking off work. Colonoscopies would require me to somehow find childcare pre and post playgroup so I can drive him. Etc.

When his dr was in the city he just skipped appointments and now we are here…

amother

Forestgreen

Sat, Apr 30 2022, 4:08 pm

Hi, just came across this post. My husband also has had crohns for many years. He was on humira and other meds for many years. dr wanted to operate... About two years ago he went off all med and started going to hyberbaric oxygen chamber and all inflamation went down. He continues to go a few times a week. Every chrons patient is different but this definatly worked for him. Wishing you much hatzlocha

amother

↑ Slateblue ↓

Sat, Apr 30 2022, 5:54 pm

amother [ OP ] wrote:

Once he is stable he won't have to go often. At first my son had to go every 4 months. Now he has to go once a year. And frequent colonoscopies are uncalled for! An excellent diagnostic test called a capsule endoscopy can be done instead. Ultrasound and cal protectin stool sample tests are also useful and easy tests. There is so much more a research hospital can offer!

amother

↑ Slateblue ↓

Sat, Apr 30 2022, 5:54 pm

amother [ Forestgreen ] wrote:

I would love to know more about this! Humira works for my son but it would be great if he could get off meds!

amother

↑ OP ↓

Sat, Apr 30 2022, 7:23 pm

amother [ Forestgreen ] wrote:

Where is it located and does insurance cover? If not, what is the cost?
Does his doctor recommend it?

amother

↑ OP ↓

Sat, Apr 30 2022, 7:28 pm

amother [ Slateblue ] wrote:

Based on my research it seems none of these
Options are as good as colonoscopy in detecting polyps.

Although the camera does sound promising and I’m adding it to my list of things to research.

amother

IndianRed

Sat, Apr 30 2022, 7:33 pm

Dont wanna hijack thread but dunno where to post either. My mornings are disasterous too. I could wash my hands and run back a second later.(But bh I dont have to make a minyan.) I could never meet with friends for breakfast only late brunch. I'm already off gluten and dairy but one GI said he doesnt see why. I know my pelvic floor muscles are dyfunctioning and am in PT for over 6 months without any real results. Any advice?

amother

↑ Slateblue ↓

Sun, May 01 2022, 5:13 am

amother [ OP ] wrote:

Based on my research it seems none of these
Options are as good as colonoscopy in detecting polyps.

Although the camera does sound promising and I’m adding it to my list of things to research.

Sorry, I don't know anything about polyps as related to Crohn's. The concerns I am familiar with are inflammation, ulcerations and strictures. Over the past few years as we worked on the correct protocol for my son's treatment he had bi-annual capsule endoscopies coupled with ultrasound. The capsule endoscopy goes right through the large and small intestines taking pictures all along the way. It's quite amazing. But polyps can't be removed as they can be during a colonoscopy. My son had one colonoscopy when he was first being diagnosed. It was never even suggested again. But polyps are not a concern in his case so that might make a difference.

amother

↑ OP

Sun, May 01 2022, 5:15 am

amother [ Slateblue ] wrote:

I’ll be looking into it, for sure.