Update--we are now in the Stelara club :)

[coolbeans]

Hello all--its been a while since I updated. We just got released from the hostage situation (hospital stay) yesterday after staying 8 days. She presented with a flare & they admitted her for iv steroids. While there, she had a complete scope that showed an inflamed colon only (hmm). Right after the scope they were able to give her the Stelara infusion. Symptoms finally started to disappear & we were able to go home on the mega dose of steroids. The pediatric GI team we saw are going to get the slides from her very first scope at the other hospital & take a look at them--they mentioned Ulcerative Colitis. You could've knocked me over with a feather---can someone have both or have we been treating as CD & it is actually UC or are they being safe to cover all bases? Anywho we are waiting to hear from that but continuing on as we have been.

The day before we went to the hospital, I heard from the surgeons office regarding the G tube but didn't hear anything while we were there. I have sent them another message so hopefully we can get that ball rolling soon. I dread it--she was HORRIBLE during this hospital stay.

We also have our appt for the 2nd opinion in Cincinnati next week. They told us that if they did the biopsy during the scope last week then they could just send the slides by courier & the procedure would not need to be repeated. So I made sure to tell everyone & I mean everyone about the biopsy b/c the clean out process was absolutely horrid & I don't want to repeat it for some time. Well I spoke to Cincy this am & they still have the procedure scheduled even though they have received the needed info. I am sorry but I will put my foot down--she doesn't need the stress that comes with a unnecessary repeated scope just b/c....She said it would just be a sig flex but that is still invasive & stressful. We are just recovering from the flare--I don't want to send us spiraling back if I can help it. I guess we just wait & see.....................

sorry for the book--hope everyone else is doing well

 

[my little penguin]

Big hugs
You can’t have ulcerative colitis and Crohns at the same time
Typically what happens is you get a UC dx and then they switch it to Crohns later (after surgery doesn’t go well )

Did they do an MRE while inpatient?
And did they scope upper and lower ?
Capsule endoscopy done ?
Before they would switch they really need to look everywhere

Tagging Lisa

As far as Cincy and insisting on flex sig
They are probably still thinking surgery
Vs getting biopsy for treatment

Or they don’t like how your current hospital did the scope /biopsy
Which could be

Ds had a second opinion there and they had no issues with his biopsy slides from our current hospital which was done a few weeks before
They canceled the scopes at Cincy so ...,

Depending on what you used to clean out it can make things easier
Ds has a set one that works well and he mostly tolerated

Word of warning Ds has been on Stelara for 5 months now
He will have scopes at 6 month mark middle Feb

He just got off steriods in December and his GI tract is not the best right now despite Stelara every 4 weeks

Wish you luck at Cincy

 

[Maya142]

Sorry to hear things have been so hard. I hope they can put off the scope since she just had one. I guess they must be thinking surgery still .

One of my big questions before surgery would be whether it is Crohn's or UC. And to answer that, I would hope they will do a pillcam and MRE.

To be honest, CD and UC are treated pretty similarly. The differences are only a big deal when there is surgery. Because if it is UC, usually they will convert the stoma to a J-pouch after removing the colon. If it's Crohn's, then it's more likely that they will leave the stoma.

Plus, if it is Crohn's, she would need to stay on medication after removing her colon. For UC, removing the colon is essentially a cure.

There are also slight treatment differences. For example, Entyvio did better in UC patients than CD patients. And Stelara is currently only approved for CD and not yet UC.

For a flex sig, the clean out is usually enemas...I don't think they will make her drink anything. But that's hard on a kiddo too.

How is she handling things? It sounds like the hospital stay was very hard on her. Is she still seeing a psychologist?

Stelara takes a long time, so she may be on steroids for a while.

Sending big hugs!!

 

[coolbeans]

They are doing a MRE during our Cincy visit. She has never had a pill cam that I know of--I don't know how that would work since she adamantly refuses to take pills.

We used Magnesium Citrate for the clean out & she drank it all--I was very proud of her. Then they woke us up at midnight before the scope & made her drink more which kind of made me mad but I also understand--she needs to be as clean as possible for good views so I got over it. It doesn't help that you are exhausted anyway & they refuse to let you rest......

I will be honest with you---the thought of surgery absolutely terrifies me!!! I put it in the last resort category. This disease stinks (literally) & is so unfair!!! I read on the forum yesterday about the person wondering when CD is not a daily thought & I wonder that also--it is still on my mind daily & we have been battling for almost 2 years--will we ever catch a break? Thanks to you for always being there when we need you--I really appreciate this forum.

also how do you get the info to come up on your posts that tells what you are dx'd with & the meds--I would like to update my profile. TIA

 

[my little penguin]

That’s frustrating
Ask for miralax /ducolax combo next time
Much gentler and gets the job
Inpatient they always delay starting clean out and kiddo ends up awake at night
I insist on miralaxplus Gatorade /ducolax combo
And push to start as early as possible in the MORNING
Not afternoon

Pill cam
They should have placed during the endoscopy
No swallowing required
Can’t understand why they didn’t do that since it’s so severe
Grrrrr

 

[coolbeans]

She started the clean out on Thursday AM & her scope wasn't till Friday mid day!!! It was not a pleasant experience but we survived & prevailed. I will remember the miralax/ducolax combo for next time.

Ugh! I wish I would've known about the pill cam before the scope. Well I know now so I can be sure to ask for the next time. Thanks for the heads up.

 

[kimmidwife]

I am sorry she is having such a rough time!

 

[Maya142]

Definitely ask them to place the pillcam during the scope. It's a big pill and most teenagers can swallow it but if your daughter is refusing to swallow pills anyway, then definitely do it while she is asleep.

I assume they will put her to sleep for the flex sig, so you can do it then.

Poor kiddo - Mag Citrate is supposed to be much harsher than Miralax/dulcolax in Gatorade.

Also tell her that when she has a G tube, prep can go through there . She won't have to drink it at all!