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Crohn's Disease Forum

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My daughter 12 is having a colonoscopy/endoscopy on Friday. Her GI Doctor said she most likely has Crohn's or ulcerative colitis. Any advice on how long her recovery from the procedures will be? Do they usually start meds immediately after? Just ready for her to feel better asap!
 
Welcome to the forum. Usually after the procedure the GI will come to recovery and will give you an idea of what was seen visually but you'll have to wait a week or so for biopsies (sometimes quucker). You'll ten have a follow up if it's IBD. They can prescribe steroid like prednisone to dampen the inflammation and they'll also px a maintenance med to take over for when the pred is tapered. Maintenance meds can take 6 weeks to a few months to be fully therapeutic.

Instead of pred you can ask about Exclusive Enteral Nutrition (EEN) which is formula only for a number of weeks. It has near same efficacy as pred but without all the nasty side effects. It also helps with nutritional intake since IBD can cause weight loss due to malabsorption because of inflammation.
 
Thanks for the reply, she has lost 15 lbs in a few months and just keeps dropping weight. Would that be something she could drink or would she have to use another method?
 
Some use Boost and ensure and just drink them, they are considered polymeric and the most palatable. Then there are other formulas the GI can px that are either semi-elemental or elemental. Some kids drink the semi-elemental but you use a nasogastric tube for the elemental most of the time.

My son did semi-elemental for weight gain he was only on supplemental nutrition not exclusive elemental nutrition. He did his by ng tube. So each evening before bed he would put in his ng tube and take in the formulas overnight while sleeping. He would then take the tube out each morning before school. Putting it in took less than a minute (the nurse trains you and the kid) and taking it out only seconds.

There are other kids here like my little penguin DD that are on mostly formula with a special IBD diet. Her son drinks his and they are semi-elememtal. I think he's 11 yo.

There's a great you tube video of a 9 yo (I think) showing how to place and remove the ng tube. It's a great watch and even though my son was 16 when we did it was still helpful to see.
 
DS is 12 and has been on the crohns exclusive diet with peptamen jr since April
Previously he had been using it as a supplement .
He does drink it orally
He was recently dx with Gastroparesis so that diet is driving his treatment vs the crohns exclusive diet
He is using formula still though
 
DD (13) just had her scopes in early December. The recovery was pretty easy for her but she did have to stay home from school the day after due to being under general anesthesia.

DD's GI was pretty confident it was Crohn's after the scopes and started her on 40mg/day of Prednisone right away. When the biopsies came back and confirmed his visual diagnosis, she started on Pentasa (6 freakin' horse pills a day).

My DD too lost about 15-20 pounds in a short amount of time which, combined with the constant diarrhea, started us investigating. It was so frustrating to see her wasting away and not able to do much.

Best of luck to you. You are back where I was a month ago. This place is a great source of support and information!

Jennifer
 
My son usually perks up pretty quickly after scopes and is usually starving since he hasn't eaten during the prep. I'd say within an hour he's back to normal and feeling fine - or as fine as he was feeling before the scope. For me personally, it took a good day before I was feeling normal again, so it can vary person to person.

Whether they start meds will depend on the GI and what they see. If IBD is obvious, they may start her on prednisone or EEN like Clash mentioned. Maybe an antibiotic. Once you have confirmation from the biopsies, then the talk will switch to maintenance medications. Read up on these and educate yourself so you can ask questions and understand what her GI suggests.

If you have the time, read through the threads here. There is a lot of good information. Don't hesitate to post questions. Someone here will have an answer or advice.
 
Welcome to the forum! I'm sorry you seem to be looking at CD or UC. Once a diagnosis can be made however, you take the necessary steps to get your child back on the road to wellness. As I recall, my son took the day off from school following his scopes. Like was has already been mentioned, the biopsies should confirm the diagnosis, and then you will likely be looking at either prednisone or formula for initial treatment. I hope things go smoothly for you tomorrow!
 
Good luck tomorrow! Sorry to hear it's sounding like it might be some form of IBD. Hope you get some answers :ghug:.
 
Good luck for the scopes. My son had pain for about a week afterwards but then it settled. We were told to go straight to EN for 8 weeks, he had to have an NG tube as he hated the taste. We went onto meds within a few months
 
Looks like she has ulcerative colitis and it's pretty severe. She was admitted to the hospital for 4 days, we just got home. She's on prednisone and Prilosec. We go back to the doctor in a week or so to discuss biologics...
 
I'm so sorry she has been through so much. Having the diagnosis and plans for addressing it are a step in the right direction.

I'm hoping she hits revision quickly.
 
Really hope the meds kick in quickly. At least you have an answer and hopefully a plan next week
 
So her biopsy results came back and the doctor said it points more to Crohn's than colitis and we might now know for sure which one she has for months! Not sure what's going on?!?!
 
That happens often. It really isn't important at this point because they treat them pretty much the same. It really becomes more of an issue if they ever start talking about removing the colon but you may never ever come to that and if you did they would do exhaustive testing to make sure what they are dealing with. At 26 my nephew is going through that now.
 

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