4th procedure in 9 months? Need advice please

[Twosons]

My son is still not responding to Remicade. He just completed the induction series Jan 24th and actually seems worse than before starting. His GI feels upper and lower scopes are the only way to make a clear decision on if treatment should be continued or it surgery may be needed. He also plans to do a capsule Endoscopy as well.

Is there any external imaging procedure that can give a clear enough picture that I can ask for in order to avoid the scopes? These would be his 4th in not quite 9 months and that just seems dangerous and harmful. I feel trapped. I don't want to do anything that will hurt my son more. I'm just not sure about anything except I truly hate Crohn's

 

[Bubbly]

Hi, being uk based not sure as procedures seem to differ.

My son is due to have scopes again, under a general, then while he is under is being fitted with a NJ tube to have an MRI scan the following day and also i believe a barium, the reason for this is son had surgery last may, 3 x strictoplasty by keyhole, but sadly still having problems.

Have been told the mri give great results, he did have this done last year, prior to surgery, pictures great, however the experience for us was worse, and he is dreading it this time, prefers the scopes!!

Sorry not sure if much help, but thought i would reply with some info and maybe you have something similar.

Good luck

 

[QueenGothel]

Sorry he is not doing well. Surgery is a tough pill to swallow, I have been there 4 times since April. My heart aches for you and I am sorry you may be going down this road. Nothing I can say will help, but that the fact that kids bounce back very quickly and I hope you find some peace with this fact. :heart:

Luckily he has you and you care so much, have they offered Humira? I know 2 people personally that didnt respond to Remi but did with Humira.

 

[Twosons]

I think our main issue is he's a low or slow metabolizer. The level needed of many medications has ruled out some according to the doctors. We just want to see him healthy and able to resume normal activities. Last night we took our dog for a walk (maybe 15 minutes) and then went by the store to grab a few items. He ended up needing to go back to the car because his cramping and nausea was so bad. This is a boy who a year ago was running 5 miles a day for thinking time. He played select soccer and was very active throughout his day. Now it seems that even simple trips to the store end up with him curled up on his bed shaking and cramping. I just don't understand

 

[my little penguin]

Hugs
Sorry about the scopes but it is the best way to see what is going on.
Fwiw most kids with another egid disorder are scoped every 4-6 weeks for a year or more in the beginning to figure things out. Not ideal but it is what it is.

 

[Niks]

Hi there

Agree with MLP, at least he's getting the tests and yes can be distressing, but hopefully you'll get a really clear picture of what's going on and how to treat.

Good luck and hugs xx

:ghug:

 

[Farmwife]

Hugs
Sorry about the scopes but it is the best way to see what is going on.
Fwiw most kids with another egid disorder are scoped every 4-6 weeks for a year or more in the beginning to figure things out. Not ideal but it is what it is.

Ya, sad but true.
I hope you son get's things figured out soon.
HUGS

 

[Twosons]

Thank you all so much. I honestly can't believe he hasn't shown improvement yet. I know I pop in and then disappear. Our life has been very much a roller coaster. So much more going on and I feel as if I'm constantly struggling through each day. I truly appreciate having a safe place to come and seek advice.

 

[CarolinAlaska]

I don't know if the scopes are harmful. At least it isn't radiation... I hate the cleanout processes too. I hope that the direction becomes clear for you soon so that you won't needs so many...

 

[Patricia56]

Many hugs coming your way. Also a bunch of questions.

Are you guys still doing this without health insurance or have you been able to get him on Medicaid or your state's children's medical program?

Is the doc who wants to do the scopes and who is now handling his care consulting with Cleveland? Did Cleveland have advice for you when you were there about what they would do next if the Remicade didn't work? Or how long to wait to see if the Remicade was goign to work?

When you say surgery exactly what do you mean? Removing his colon or surgery in the small intestines somewhere?

Has there been a trial of TPN (total parenteral nutrition) or discussion of one to do complete bowel rest? This would involve having a PICC line in his arm and getting all his nutrition by IV.

I assume they have tried antibiotics but I'll throw that out there FWIW.

Are they talking about starting him on Humira or Cimzia instead of remicade?

Other possible options include thalidomide and tacrolimus - not used very often but have been the magic bullet for a couple kids I know of after nothing else worked.

 

[Twosons]

Many hugs coming your way. Also a bunch of questions.

Are you guys still doing this without health insurance or have you been able to get him on Medicaid or your state's children's medical program?

Is the doc who wants to do the scopes and who is now handling his care consulting with Cleveland? Did Cleveland have advice for you when you were there about what they would do next if the Remicade didn't work? Or how long to wait to see if the Remicade was goign to work?

When you say surgery exactly what do you mean? Removing his colon or surgery in the small intestines somewhere?

Has there been a trial of TPN (total parenteral nutrition) or discussion of one to do complete bowel rest? This would involve having a PICC line in his arm and getting all his nutrition by IV.

I assume they have tried antibiotics but I'll throw that out there FWIW.

Are they talking about starting him on Humira or Cimzia instead of remicade?

Other possible options include thalidomide and tacrolimus - not used very often but have been the magic bullet for a couple kids I know of after nothing else worked.

We finally have insurance but it is limited.

Yes, this new GI is in contact with the Cleveland GI. In Cleveland we were told due to him being a low metabolizer certain medications (Humira for one) just aren't options. We were told Remicade would most likely fail but chose to try in order to prevent surgery.

In Cleveland they said the likelihood would be full colon removal but this new GI thinks possibly just the left side needs to be removed. Both agree he could show response to lower lever meds after surgery.

He did the NG tube with Peptide for 35 days and showed no healing inside. We've not talked about a PICC line.

Since June he's done full rounds of antibiotics with each hospitalization.

My thought is that he most likely has scar tissue that is aggravating his situation. He went almost 5 years with issues that were misdiagnosed and looking back it truly makes me believe the problem area isn't just inflammation but also scar tissue.

 

[Smika]

Is there any external imaging procedure that can give a clear enough picture that I can ask for in order to avoid the scopes?

Upper GI with a Small Bowel Follow Through... It's an x-ray where you drink a glass of barium and have an x-ray taken every half hour or so until the barium runs completely thru you bowel. Usually takes between 2-4 hours and is completely painless. Not sure if he has had this test done but it has always been sucessful in my diagnosis. There are also CT Scans and MRI's that can be done also.