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You could check GI Care For Kids with the peptamen they're affiliated with Scottish Rite CHOA Sandy Springs. Out of touch with the peds world since C moved to adult GI. Hope O's health is improving greatly. Tell her I said War Eagle!

Your child's disease progression after diagnosis sound so eerily similar to my son's journey but my son was a bit older. At the ileocecal valve and just beyond is where my son's disease eventually required sx. All other areas with visible or pathological evidence of CD were treated by meds and...

Hers was planned similar to O's if I remember correctly. She would have stints in the hospital then go awhile where it all looked bad but she was functioning and saw no reason to tip the apple cart. But finally the GI told her that there were no choices left. I think it still took some time...

Just check in and saw all of this. That O has been famous for years, tell that Doc we all said so! The surgery you are talking about that includes the colon is the one that my husband's niece had. She has never looked back. And hasnt had another hospital stay related to the GI since then(she...

Just came on to make a post about C's telehealth appt. He didnt get his Stelara infusion because we were battling insurance then Covid came along and he didnt want to go to infusion center during that. Long story short, the GI today said that in several teleconference with his peers they have...

Tesscorm, it's really apparent after taking a lengthy break from school that it is a stress unlike his work stress. He can rock right along at work but school causes an anxiety and stress that has more than once sent him in a downward spiral. He has a therapist and they have been working on...

Maya message me whenever. I'm checking in at least once a week again and I'll answer any questions you may have!

Maya C's scar for the tube looks pretty good. It is a little more raised than his laparoscopic surgery scar but its early on yet. It has healed nicely and he's been happy with how it has gone so far.

Tesscorm, C is working close to full time right now. He wants to start back classes soon but is really scared to overload himself and have an active flare.

Stelara is still at every 8 weeks right now so definitely room to play. Doc said we'd change one thing at a time to keep things simple to track unless symptoms, lab work etc showed need to move quickly.

Hi everyone! It's been a long time since I've actually posted much. I hop on now and again just to catch up with all the kiddos...wow most of our originals arent kiddos anymore! A quick update on C. His G-tube came out some time ago. It was at the point where he be switching to an adult GI so...

I've been away so very long that when I signed in I didnt recognize the forum at first. But, when I saw this thread I immediately clicked on it. CIC, so very sorry for all that O has been through! Prayers that things are improving and the disease gets it's butt kicked by the antibiotic cocktail...

Hey guys. Thanks for all the info. I'm actually waiting in the pre-op room now. The anesthesiologist doesn't want to do a pain block so its just anesthesia and he just gave me a preoperative lyrica. I should be going back for surgery within the next hour. They said I'd come out with a catheter...

Wow Tess that sounds terrible! I hope the intervention radiologist can help you and you are pain free really soon! Thanks for the info about the prep as well!

So sorry to hear that you have been having health issues as well! It has been a rough year and I'm looking forward to 2019! Thanks so much for the info. That is exactly the information I was looking for. C had never fully committed to low residue before scopes that I can recall but I remember...

Hey guys! It's been awhile! C is still stable. He has a scope coming up. He is on Stelara only right now. His weight is pretty good right now. But this question isnt for him it's for me! So, first the most unbelievable story... In August, I had a total hysterectomy(on a tuesday). Two days...

The problem with stopping and starting a med like remicade(infliximab) is that your body can build antibodies to it. If your body has built antibodies then you can absolutely have a reaction to the med, sometimes a very serious reaction. In the early days, physicians would stop and start...

My son goes to GI Care For Kids. He's was dxed at 15 he'll be 22 this September. We have always loved our GI. C is loathe to know he'll eventually have to move to an adult GI. Weve had a really great experience as far as GIs. I agree with the others about getting a second opinion, it cant hurt...

Sorry I went MIA for awhile. I think I was just overwhelmed a bit by the hamster wheel we seem to be on that doesn't seem to improve C"s disease. So C started his formula, not at 80/20 or 90/10 but at 65/35. We knew this wasn't the standard done in studies but the GI wanted this for 2 months...

Wow that's very interesting. C had a follow up with GI today. I am going to update the thread about the visit. I haven't been on in awhile. I can see I've missed a lot. Thanks for this article!