Is it necessary to have colonoscopy in 3 months

[dfyang123]

Hi, my son just saw his GI doctor today, he had MRI recently shows normal small bowel, but his stool calprotectin is 700(Anyone know how bad is this number looks like?), he had colonoscopy last December less than 3 months, he had been on Lialda for more than 2 years since his diagnose with mild to moderate Crohn's, no symptoms. Now doctor ordered to have another colonoscopy in order to know if he needs bump up to biologics. I don't understand why he need do colonoscopy again in such short time if he can monitor his inflammation through stool test? The previous colonoscopy also shows inflammation, but he insisted to do so. Our insurance is not so good, I'm scared to see my son will rely on these immune suppressors for the rest of his life. Any advise or comments? Thanks!

 

[ronroush7]

I am sorry you are going through this. I am going to tag clash.

 

[Salad_Shooter]

He probably wants a *ahem* bird's eye view of what your son's colon looks like. It's a big step jumping to a biologic, and I'm sure he just wants to make sure the timing is right. He can tell more through a scope than relying on tests. I think he's being very conservative in prescribing a biologic. If it were me, I'd feel more comfortable knowing he's taking that kind of an approach, rather than throwing your son into a biologic if he's not quite there yet. I hope your son's not at that stage, but if he is.......

As far as being on a biologic all of this life, there are so many new drugs coming down the pike in the near future that aren't biologics. Just hang in there, Mom.

 

[ronroush7]

Be encouraged. There is a lot of support here and they are continuing with research.

 

[my little penguin]

There is a parents section here
http://www.crohnsforum.com/forumdisplay.php?f=49

Welcome to the forum
Depending on the lab numbers should be less than 50 or less than 159
Full flare is in the thousands
700 is not a low number

Liada is a 5-Asa which only treats the surface of the intestine and does not treat all the layers . Generally it is not recommended as a monotherapy at all for crohns

Scopes are needed since fecal cal just shows there is inflammation in general but not the cause could be infection etc.
They need to know the extent and if it's getting worse and which parts of the intestine are affected so after biologics they can tell if they are working

There are secondary insurances through the state that kids with crohns qualify for regardless of income
Most states have this program
Your children's hospital social workers could help

My kiddo has been on immunosuppressants (6-mp and Mtx as montherapies ) and later biologics
Biologics had far less side effects for my kiddo


Tagging Farmwife
Crohnsinct
Maya142
Mehita
Jmrogers
Clash
Tesscom

 

[my little penguin]

http://www.hca.wa.gov/medicaid/publications/documents/22_315.pdf

This might help

Also remicade has remistart so whatever is not covered by your insurance is covered by remistart program so you only pay a small amount $25 -$50
Humira has similar - my humira protection plan so again your copay is about $5

 

[Maya142]

Hi and welcome! Check out the parents forum - lots of info there. The doctor must want to "see" the inflammation himself, but I agree, two colonoscopies in three months is NO fun! 700 is quite high though, and I'm not surprised that he wants to move your kiddo to biologics. Scopes will let him take biopsies which will give him more info. Certain infections can increase Fecal Calprotectin too.

My girls have been on both Remicade and Humira and definitely preferred Remicade. They have not had ANY side effects with biologics, besides a little tiredness after infusions. No increase in infections or anything like that.

Good luck!

 

[crohnsinct]

Just an echo to Fecal Calprotectin tells you there is GI inflammation but not the source. Not only that but a 700 in one patient could mean full on flare and in another patient mild inflammation. Treat the patient not the labs! So the doc wants to see for him or herself what is actually going on. I think it is a great idea. There is a middle step of immunomodultors also so maybe the scope will reveal that this is a possibility.

Good Luck!

 

[dfyang123]

Thank you all for replying my thread, I feel so much better already. Crohnsinct said "There is a middle step of immunomodultors also so maybe the scope will reveal that this is a possibility." What does that mean?
Also my son's previous GI never tested his stool calprotectin, so no comparison. But his disease seems very stable for the last 2 years.

 

[Maya142]

Immunomodulators are medications like 6MP, Imuran or Methotrexate. Some GI's use step up therapy - starting with 5 ASAs like Lialda. Then the next step is immunomodulators like 6MP or Methotrexate. Then if those don't work, finally biologics like Humira and Remicade. Other GI's are now using "top down" therapy - starting with the most effective drugs - biologics - to get the disease under control quickly. With kids with severe disease, this approach is common.

Some GI's also use various combinations - such as a biologic + immunomodulator.

My daughter started on Remicade and MTX when she was diagnosed. 8 months later, her scopes were MUCH better - all the ulcers in her colon were gone and there was only a little mild inflammation in her terminal ileum. With kids, the disease tends to spread and is more aggressive so pediatric GIs tend to treat it aggressively.

CCFA has some good info about the various classes of medications: http://www.ccfa.org/resources/types-of-medications.html

 

[Mehita]

Welcome to the Forum... like the others have said, there is a Parents section that is a wonderful resource of information.

How old is your son? As MLP said, Lialda (Pentasa, etc) only works on the top layer and Crohn's can affect the deeper tissue, so it's not a great maintenance med for Crohn's.

Crohn's can change so quickly in kiddos, so while 3 months may seem short, he probably wants to get a good visual understanding of what and where and then switch up the meds and compare later.

As for being on meds the rest of his life... this is a serious lifelong disease, currently with no cure. Meds, and sometimes diet, can help your son live a normal life. I think what's hard is when they have no symptoms, you aren't able to fully grasp how bad things can get. Even a small amount of inflammation can be doing a world of damage on the inside. If you were to flip his body inside out, you'd treat all the damage (inflammation) that you see, and that's part of what his GI is trying to do - see what's going on and needs to be treated.

As for immune suppressors, we've never had any issues. If my son catches a cold, it may last longer than the average cold, but he's no worse than in terms of symptoms. He's actually quite healthy and catches almost nothing. Hand washing goes a long way and there are things you can do at school, but it's never been a big problem.

Good luck to you and your son. Keep asking questions and pop over to the Parents section and say hello.

 

[Farmwife]

Yes I'm with you, I hate the fact my 7 year old needs Remicade but I hate even more what ibd WILL do to my kiddo if not treated. It's a no win win sometimes but I take the drugs because they give my Grace a better chance at a regular life down the line.

I second what mlp send about secondary insurance. We have have private insurance but the deductible was killing us. We signed up for Michigan's Special Children's Health Coverage and now it's all covered! They will cover what ever or insurance won't. It's awesome!
Let me know if you want more info!

 

[Jmrogers4]

Welcome to the forum
sometimes especially if they are not showing symptoms and but other tests (fecal calprotectin) indicate there might be something going on they need to lay eyes as it were on the areas. My son is asymptomatic so while there may not be a lot of outward signs in the past only lack of growth, damage was being done on the inside because we were not treating as aggressively as we should have since we thought everything was stable.
An FC of 395 showed massive inflammation for us once further imaging was done, the lab that does his test has anything under 162.9 as normal. He started on Remicade shortly after and last FC about 6 months ago was 68.6.
Remistart just changed its policy and it used to be good for a year and then you cold reapply now you don't have to reapply it is just automatically renewed.