Search results

True, the journey can be long and difficult. Happy to finally be in a place where we can encourage others. :hug:

That's great news.

Thanks for sharing. It seems to me that the GI's are all in on Vedo. Gus is still thriving well on Stelara (after almost six years of continuous use) and we don't have any reason to be concerned about needing a change. Still, as a long time Crohn's mom I know that it is important to keep tabs...

Did you go with the Setelara? How is it working for you? Remicade and Humira did not work well for my son. At 12 years old we went to Stelara. He has been on it for almost six years now, and doing GREAT! He was one of the few early kids to use it and, so far, it is the only thing that has...

Hi there #sam's mom. I understand the reluctance to switch from something that seems to be working to something new, especially since the black box warnings are so ominous. Remicade worked for Gus for about 18 months, then we went to Humira. That only lasted a few months. There was a long...

Yes, Gus started Stelara at 12 yrs old...he is almost 18 now, and still doing great with Stelara. Our GI Doc is happy to talk to any Peds GI if desired, just send me an email at [email protected] and I'll give you his contact information. I can't believe insurance is still balking since...

Hi everyone. VTfamily here. Gus is doing GREAT! Stelara has been amazing for him. Was actually just counting and realized we are going on six years on Stelara now. I wish I knew why Stelara worked when the Crohn's drugs didn't. I think that type of knowledge would make a difference for so...

I know the feeling. When his younger siblings surpassed him in height and abilities, he tried to hide it, but it did take an emotional toll on Gus. Coming up on four years on Stelara, and Gus is now making measurable progress on his growth chart. It is amazing to see the physical changes, but...

So sorry to hear docs have not found a good, lasting solution for your family. Hugs and continued prayers.

I'm putting this under the heading of "you know you've been dealing with this stuff too long when..." It's good to be able to "spot" the trouble signs so you can get an early jump on a solution. Hugs to you both. Cheryl VT

I hope you find a good path soon. It is crazy to think that a good solution for a disease that causes severe gut pain is a drug combo that can cause gut pain too. Prayers for you and your family. I'm interested in you progress. Cheryl VT

CarolinAlaska, How did the pill cam go today? Cheryl VT

He had been through several versions of G-tubes and G-J tubes along the way. The tube has been in for about 7 years. He hasn't had to use it at all since he started Stelara 4 years ago. Pulling it out was easy. I cleaned the area really well and put gauze and a bandage over it. Cleaned and...

Sorry Kim for the mix up. I will go to your thread to follow-up on the study. Sorry to hear it didn't go well. Cheryl VT

I completely forgot to mention...it has been a very long time since Gus needed any supplemental feedings through his G-tube. So, for his 16th birthday, his doc approved removing it. I deflated and removed it at home. He was so elated! Nothing but pure joy for the rest of the day. He had the...

kimmidwife, How did the pill cam go today? Cheryl VT

I hope all goes well with the pill cam. Gus' scopes never revealed where or how bad his strictures were. The pill cam was a huge blessing for us...not because it revealed anything more than the scopes, but because it got stuck and they had to go in and surgically remove it. That was our first...

He was on 6MP and MTX with Remicade and Humira, but neither did the trick in preventing the antibodies. Honestly, when we started Stelara it was so far outside the box, I think his doctor was really just taking a stab in the dark and focused on the Stelara rather than the usual protocol for...

Kim, I will be saying prayers for Caitlyn's success. :dusty: I am thankful everyday that Stelara has worked so well, and for so long for Gus. Cheryl

Another year, time for another update. Gus was a "little guy" so for long, it has sort of taken me by surprise that he is really maturing physically and much closer to "full grown adult" size than little kid size. He is now 4" taller than me...and to think I was worried he wouldn't ever cross...