Search results

My first time ever hearing about CD was when my sister was diagnosed 25+ years ago when she was VERY sick and had a temporary ostomy and a resection. At the time they didn’t have any options for maintenance so she’s never been on any meds for it. She’s had three kids and lives a normal life but...

I brought up step down too and he wants NO meds. He said he was going to try to modify his diet to be better so we’ll see….

I worry about recurrence too and tried to argue that it’s only every 2 months and if it ain’t broke don’t fix it. It was like talking to a brick wall. Fingers crossed!

Hi all, just wanted to vent (and hopefully get some reassurance)! After DS had his resection last July (2021) he stayed on Remicade to get through his senior year of college. He HATES Remicade! He is on the spectrum and has hyper fixated that it will give him cancer (no matter what facts/data...

Thanks for checking in! Doc said the scope looked good and she is still in remission YAY! They also took biopsies so we’ll wait for those too. She had a very tiny internal hemorrhoid so that is probably the cause of the intermittent bleeding. Her heart rate dropped a bit when they were moving...

Her level right before infusion is usually right between 15-19 (I checked the past results against her infusion dates). We’re on our way to the scope this morning..it was a LONG night!

Thank you so much for that awesome explanation, that makes so much sense! I feel dumb now because even though I knew they tested at the halfway point this time I wasn’t factoring that in!

Hi all, waiting for DD’s scope tomorrow on pins and needles and her Remicade level just came back at 34 with no antibodies. She’s currently 7.5/mg every 8 weeks and the labs were drawn last week so she was about halfway between infusions. Her level has always been between 15-34 but I just now...

Thanks for that! I actually asked DD if it could be her period and she’s not due for it until late next week and the blood definitely came from the back when she wiped. When DD saw the GI she did a minimally invasive check and had her push like she was going to the bathroom and didn’t see...

Thank you SO much, this really made me breathe a bit easier! Hopefully the Remicade levels and Monitr test will come back before the scopes and then we’ll have the full picture. GI did mention possibly going up to 10mg on her Remicade and/or doing it earlier than every 8 weeks.

We just got her calprotectin level back and it’s at 80. We had it checked twice last year and it was around 50 each time so it has gone up a bit. I’m pretty sure I’ve heard that people with IBD sometimes have slightly higher levels that are still considered “normal”. I think I’m just grasping at...

I guess I just wish I knew how concerned the doc is, she has a great bedside manner and whenever we had scary news she told us so calmly so it’s hard to read! She also ordered a fecal calprotectin test and we dropped that at the lab today so hopefully we’ll get those results in a few days. It’ll...

I hope so too but wanted to get it checked since it’s happened more than once in the last few months. I was hoping when the doc looked yesterday she’d see a small hemorrhoid or fissure but nothing on the outside at least. Her albumin dropped a bit from last month but she’s not anemic and her CRP...

It was bright red

Thanks so much for the reassurance! You’d think after all we’ve been through since she was dx’d 7 years ago I would be used to the ups and downs but DD is 21 now and this never gets easier! DS (23 years old dx’d a year before DD) just had his scope a few weeks ago and it looked great so I was...

Hi all, I think I just need some words of wisdom and encouragement to calm me down. DD had blood in her stool a month ago for a few days and it went away. Her labs have been looking great and she has no pain, fever, weight loss, etc. The blood started a few days ago (it has already stopped agan)...

DS (21 years old) scheduled his resection and I have so many thoughts/feelings! DD had hers done 6 years ago so I wanted to get some advice/opinions since it’s been so long. To make a a very long story short, DS was diagnosed 7 years ago and has had several hospitalizations for strictures...

DD’s eardrum looks good now and has healed and FC came back at 55 so looks like the CRP was Covid vaccine. THANK GOODNESS! She doesn’t think we need any further testing right now so hopefully the CRP gets back to normal quickly so we can put this craziness behind us! Thanks again for all your...

Glad to hear the steroids worked! Now we just have to see what the test says and go from there. I’m trying not to think about it too much but just hoping it’s ok so we can stop worrying about every high CRP she’s been having the last few infusions.

Sorry to hear that! How long did her flare last and did they end up needing to scope her?