12 hours until upper and lower scopes

[greypup]

My daughter was dx'd in April w/severe presentation of crohn's. She had resection surgery in June. Tomorrow morning she is scheduled for her first upper and lower scope to see all that is going on inside.

She is cleansing today/tonight and handling it very well. She has some bleeding with stool. The GI office told me not to freak out about that if it should happen. So I'm trying not to.

I'm trying to stay focused on the positive. Which is...

- her fecal calprotectin last month was 35
- her energies are returning
- her stools are firm, solid, look pretty normal. Most days, she poops once, maybe twice.
- she's put on the weight that was lost pre-diagnosis
- she is able to eat most anything...the heavy dairy foods she needs to eat on occasion and then take digestive enzymes. it seems to work out okay.
- the Apriso seems to be helping the rectal fissure. There isn't active bleeding.

The above is a lot to be thankful for. I truly am grateful.

I'm nervous about what medication recommendation the GI might make after the scopes. Of course, I would prefer to not have use the big guns.

Is there any advice you can give me for questions to ask the GI before and/or after the procedure?

Thank you!!!

 

[Jmrogers4]

Hope the scopes look great and you don't have to make any decisions but I always ask the what if... questions for example what if inflammation comes back what are you thinking immunosuppresent? Biologic? why? What happens if we don't?

 

[my little penguin]

Also don't rule out a med just because its a big gun.
The med that is right for kiddo is the one that works
All other things don't really matter if the drug doesn't work.

 

[greypup]

I'm trying my best to keep an open mind to the drugs. I def have a lot of anxiety about them.

One of my twin boys developed an anaphylactic reaction to gelatin in the MMR vaccine. A 1 in a million allergy. My husband who has a surgical infection from knee replacement has developed reactions to vancomycin and gentamycin. He's in the hosp now as they removed his knee and are trying to determine how to treat the infection and give him a new knee. Our family seems to react...

(I should also add that in addition to Apriso, M is taking Omega 3 supplements, Vit D, l-glutamine, prebiotics and iron. )

 

[upsetmom]

Good Luck with the scopes!

I'm sorry to hear about your husband....:hug:I hope they get the infection under control and he recovers quick.

 

[Maya142]

Good luck!
I have to second what MLP says, the "big guns" which I was very nervous about turned out to be miracle drugs for my daughter. In the last few years I've learned that the disease is so much worse than the medications!

 

[Sascot]

Good luck for the scopes. Hope they go well.

 

[greypup]

M is finished w/scopes. The colon near the reaection site was inflamed. Confused how the fecal cal score was a 35 w/the colonic inflammation. Everywhere else looked good. Our clinic doctor did not do the scope so i havent gotten her interpretation yet. Do you have any advice for me while i wait for her interpretation?

 

[Farmwife]

No advice here. Just hugs.:hug:

 

[Mehita]

I thought fecal cal was a measure of inflammation further up. More the small intestine area...? That might explain it.

 

[greypup]

Ahhh, then that makes sense.

 

[Farmwife]

I thought fecal cal was a measure of inflammation further up. More the small intestine area...? That might explain it.

Wait???? I thought I heard the other way. :ybatty:

 

[greypup]

Back to being confused ;-)

I won't hear from the GI until next week. She won't talk to me until biopsy results are in.

 

[Mehita]

Sorry. Maybe my little penguin will pop in soon. She knows everything

 

[DustyKat]

Faecal Calprotectin is generally considered a reliable indicator, in most cases, of inflammation in the large bowel. There has been conjecture in the past about its reliability as a predictor in small bowel disease but more recent studies seem to indicate that it is equally reliable in small bowel disease too??

Good to hear that your lass has come through the scopes well. :ghug: I hope you hear from the doc soon and have a clear path of action to take. Good luck!

Dusty. xxx

 

[Victoria816]

Sending positive thoughts your way ♥