Had scope today and here to brag!

Good for you Jan!
That is great news.

It's always good news when you get scoped and nothing of concern is found. I am about 2 months away from my next scope which I think will be my most important scope ever. Not going to do it without sedation, however.

Yay for you Jan! Everyone deserves good news like that. :-)

Heidi

Does this mean we can refer to you as the Velvet Ileum?

Excellent scoping Jan!

kathy

Great news Jan!! Here is to many more scopes exactly like this one in your jpouch future!!

yea to jan and her velvet ileum!

Sure, I like that moniker! I'd never heard of that description before (maybe because I never had it...). But, see what you miss if you are sedated? Since the sedation nurse had nothing to do, she was showing me pictures of the "pirate quarters" she made up for her grandkids in her spare bedroom, using repurposed furniture. Every once in a while the doc said, "OK we have business to do, time to take some biopsies," and they'd switch gears. But we talked about the cost of health care and why we have to postpone retirement, movies, all sorts of stuff. For some reason, it didn't seem to matter that I was laying there with a scope up my butt in a darkened room...we may as well have been in a coffee shop! I suppose some people would find it creepy or unprofessional, but maybe I set the tone by starting with the jokes and small talk...

Jan

Way to go, Jan!!!!!

great news jan..you deserve it!!

Good to hear things are looking so good for you, Jan.

Agree totally on the non-sedation. Another upside to it I've found: no waiting around for an afternoon office appointment to discuss the results - results are discussed on a real-time basis.

Jan, that is wonderful. You are so very helpful to everyone here, like our local doctor, and deserve the best news.

This site needs a "Like" button.

Hooray! I like Kathy's new name too.

Hey, Jan

That's great news! Always comes as a relief when we've had to endure all that is part and partial to a jpouch.

I had my scope on Friday - the doctor also said things look great. (Which I knew)

Then, 24 hours later I started to feel pouchitis symptoms developing. I contacted my doctor's office and was told it was my body reacting to the biopsies they took of my pouch. But they weren't even certain of that. Who knows, I could have gotten an infection from the scope.

Moral of the story - leave well enough alone! If you're feeling healthy, don't visit the doctor

Blair,

I have this concern every time I get a scope (just had one today). I have had so many scopes due to issues that I have had since jpouch takedown that if you are feeling well, unless you have a history of dysplasia in your colon or rectum at or before colectomy time, you should have a reprieve from scopes for as long as you possibly can...especially if you are asymptomatic!

Blair, you are funny! Yes, endoscopy is a trauma, so it is not something to do willy-nilly for no reason. My final flare after 23 years of UC began within a month or two of a surveillance colonoscopy. Could be coincidence...

That is also why I don't think we should be scoped every time there is a symptom. Once they've seen what is going on in there, you don't need to look at it every few weeks to see if the treatment is working. You can sort of tell by your symptoms.

But, surveillance is necessary, even if your pouch is great, particularly if it has been 10 years or more since a UC diagnosis, or if you have prior findings of dysplasia or cancer. There still is not a consensus on the frequency. At first, they were swearing you needed annual checks, or more. Then it was 2-5 years. Now, with increasing findings of dysplasia and cancer (still very small) as more and more aging pouches exist, they are starting to think annual again. I feel comfortable with 18 month intervals, unless I have a rough year.

I'm sure recommendations will continue to evolve.

Jan

Great news Jan(:

Hello, what is simponi? And will that be approved to treat pouchitis? Are there side effects? Thank you.

Simponi is a biologic, similar to Remicade, Humira, and Embrel. It could be used for pouchitis, but probably only if your underlying diagnosis is ankylosing spondylitis or a related disease or rheumatoid arthritis. It is going to be approved for UC soon, so if that is your diagnosis, then it would be appropriate. Humira is approved for UC already (and Crohn's too).

Sure there are potential side effects, just like any other drug. Mostly it is liver and bone marrow issues, and potential for infection. But for me, I've been on one biologic or another since 2006, and fortunately no side effects (so far). My view is that I worry more about the side effect of not treating my disease, since that is real and happening, than a side effect of a drug that may never happen. It is all about risk vs. benefit... If you are unwilling to face risk, you are sort of paralyzed. But, still, it is a personal decision and choice as to what you are willing to live with.

Jan