Search results

Hi Staying Positive. I’m late but wanted to say I’m sorry you and your son are going through this. This board is a great place for feedback and support from people with experience. You can pretty much ask anything and someone will know answer! I’m glad you are pursuing other drs in big markets...

Blows keep on coming. So sorry. I hope GI has a new plan.

Sending prayers and healing energy. Can’t tell you when I was last on this site, many years. Something made me log on today. So glad I did so I can join Team O.

Wow, there is a lot of good stuff in here for you to ponder, MLP! I loved reading this. We are early into the college experience so I'm not sure how I feel about school choice. He is in a major market but direct flights are at weird times of day; combine that with freshmen getting leftover...

She made it to school ok? I hate how long this uncertainly has gone on and how sick she is. Where do you find the energy to think about options with a clear head and get these other opinions? Very impressive. I see where she gets her fighting spirit and resilience! Hoping and praying you’ll...

Cauliflower flour is straight up nasty. No hiding you used it. Some coconut flours have less strong taste than others but if you don’t like coconut you won’t like to bake with it. Did you see cashew flour? And a friend once made me some pecan flour FOR MY BIRTHDAY when I told her I was exhausted...

We have SCD legal turkey, bacon, waffles, breads, etc sent to my son’s dorm. I am over the cost now bc it is what it is but it is ridiculous. It is funny what item his friends find tasty. One friend from high school would drink Peptamen Jr with him! I’m sorry her frequency is up. Whether you do...

Ha yeah most foods you don’t make yourself are out! Try to find a salad dressing! I see xanthan gum in the grilled nuggets. I had never heard of it until I studied SCD. It is sort of like corn starch but why does grilled chicken need this “stabilizing agent”? Why does any food need it? I am...

Great start! I’m impressed. I know you will feel better when you can add nuts and other proteins. Eating out is so hard. I think Chick Fil A grilled chicken has sugar and corn starch (illegal). You would not believe how many items have those ingredients. Guar gum is also everywhere. Grocery...

Thx for tagging me MLP. I haven’t been on here in ages and tags go to my junk email which I happened to check. I’ll read up and see how everyone is doing. I hope uneventful is the dominant theme. As for O...wow. Not what I wanted to read. She has such grit and resilience, how does she do it? I...

I have no experience with Remicade. Sounds like you've had a long road and hopefully next plan will work quickly. My son used EEN for a number of months and then stayed on partial EEN even when scope confirmed remission. I believe he will be on it forever as one of his treatments. It is hard...

Hi Pangolin. I haven't been on the forum in a bit so pardon me for jumping in late and possibly making you repeat yourself! I see there is a lot to catch up on! When were scopes? MRE? FCP? Did he have of those any while on Remicade? Our GI LOVES to try EEN but even he says that after 6-8...

Although I’m sorry to hear all of this I feel slightly better that there are other young adults who don’t do what we think any sane person would do. It truly boggles my mind. I guess they feel bulletproof? Did you ever imagine these scenarios when they were precious, compliant children? Thank...

The plan is Remicade as next step. We did a tour of infusion center years ago. Scoping may be aggressive and we are waiting to schedule. The concern is he went from years of minor flares (undisgnosed) to one big sudden meltdown at diagnosis. May get a second from Boston but he has had scope and...

I too check in on Wed. The weight gain is encouraging. Hoping the move to 10mg is smooth. I feel like it will be. We need this to be a success story!

Oh we’ve been in lots of dr discussions about how bad formulas are and how packed with not only bad ingredients but things these patients should avoid. They are exact opposite of his clean, organic, preservative free etc SCD. But the combo worked so well for him no one dared to tinker. He...

Well....he is doing "great". But... Mr. "I am doing so well, maybe I'm not really sick anyore (no comment), I hate this diet and these shakes"... Who is an "adult" and can make his own decisions... has a FCP of 200. After YEARS of 40-60 every 3 months. LOVELY.

Someone posted recently that FCP results and norms can be different for small vs large bowel Crohn’s, or something similar. I can’t find it. Do any of you have info?

You know none of us would “accept” a simple good for a status update! We “need” details so we can give nine opinions on her drs and treatment! Just kidding. This does sound like process. I don’t know how she does it. She seems to really thrive at school so maybe that helps. I think we can...

CIC- how was first week back at school?