# Using Stelara For Children With Crohn's



## vtfamily

My son (Gus) was dx with Crohn's about six years ago.  It has been a long haul, with ups and downs.  We took the slow, stair-step approach to his treatment.  Starting with the most benign treatments and worked our way up to the scary stuff.  You name it, we've tried it.  His Crohn's just hasn't responded to much of anything...at least not for very long.

So here we are now, facing Stelara.  I only wish we had more "first hand" user information before we needed to begin.

I'll be using this thread to share our experiences, and hope that others will do the same, so that families can move forward with a Stelara decision with confidence.

His first injection was last week.  So far, so good.  It should be noted, however, that the injection was VERY painful.  I know they are using the injection method of Stelara for psoriasis, but I need to find out if infusion is an option when it is being administered to children.


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## izzi'smom

Just wanted to pop in and wish you luck! We haven't tried stellara, but my dd and I both did biweekly injections of humira for a few months...icing the area for 10 minutes prior helped,as did injecting super slowly (over a minute). Hth!


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## Tesscorm

So sorry your son has had such a tough time!  Lots of hugs and wishes that Stelara works great for him!

Thanks for taking the time to share your story for others - it always helps to know there is someone else who's been there, done that and UNDERSTANDS!! :ghug:  If you haven't found it yet, there are some threads relating to Stelara (in other sections of the forum), I've included a link to a list of threads with Stelara in the title - they may be of interest to you.

http://www.crohnsforum.com/search.php?searchid=1296563

Off hand, I'm not sure if there are any other kids here on Stelara (if there are, I'm sure they'll be jumping in) but, there are LOTS of parents here to offer you support and friendship!

Good luck!


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## Jmrogers4

Welcome Vtfamily and thank you so much for sharing, as Tesscorm said I can't think of any other kids who currently use Stelara so thank you for sharing your son's journey.  Hope it makes him feel wonderful and healthy.


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## Livilou

Hello vtFamily!   I have a 17 year old daughter (Olivia), who has had CD for over 7 years. We pretty much followed the same pathway as far as meds/treatment goes. In Sept, 2011, Liv was diagnosed with thyroid cancer while using Humira. Of course, the Humira was discontinued so the cancer could be treated, and now the MD's are saying it is too dangerous and risky to restart TNF biologics for fear of cancer recurring. We went to Mt. Sinai Hospital in NYC and met with a GI who is directly involved with drug trials and he recommended that Liv start Stelara. Unfortunately, we are battling with our insurance company (United Healthcare) as they feel it is "not medically necessary" for Liv to use Stelara! We are now submitting a secondary level appeal to try to convince them that she needs this drug. So frustrating!!
I am so happy to have found this thread, as I have been scouring the internet looking for any user info with CD patients. I hope that Stelara is the magic bullet for Gus! I will be following his progress closely! Fingers and toes crossed, prayers and healing thoughts coming your way!                                                 Kim xoxo


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## vtfamily

Thanks everyone for reaching out.

Stelara is still pretty new for Crohn's and difficult to get because using it for Crohn's is "off label."

We are fortunate to have Kaiser Permanente as our insurance and a doctor who was able to get his administrators to listen and approve the off-label use.

The good news is that my son is already feeling pretty good.  He is not feeling "full" as quickly and wants to eat more often.  It's just music to my ears!


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## CarolinAlaska

I'm so glad to hear that he is feeling better.  How often will he get the injection?  Are there any trials going on with Stelara for crohn's?


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## vtfamily

Carol,

Stelara is currently in stage three trials for Crohn's.  The dosing schedule is 0wk, 4wks, 12, wks, 24wks, 36wks, etc...   Gus' next dose will be in about two weeks.  The injection is so painful, I'm hoping we can find evidence that infusion is equally effective so we can go that route instead.  Fingers, toes and shoe laces crossed.

Cheryl


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## vtfamily

What a week!  Gus has missed most of the third quarter of school due to pain and hospital stays.  We finally were caught-up on school work and were hoping he'd be able to attend the last two weeks of the quarter...10 whole days in a row!

HA! Tuesday he had a lot of pain and his GJ site was looking pretty angry.  The pain continued into Wednesday morning...so, the GI doc had us return to the hospital.

You know the old joke...man says to the doctor, "it hurts when I do this."  And then the doctor replies, "then, don't do that."  That's how I feel at the moment.  His strictures are causing him pain when he eats.  If he doesn't eat, no pain.  Simple right?!  If we want him to be pain free, all he has to do is not eat at all.  Yeah, soooo easy to convince a 12 yr old (almost 13) to go without out food and maintain his usual routine for the next three to six months.

Fortunately, our GI knows this is a lot to ask of a kid.  He ordered a new MRE.  The good news is that the extensive inflammation Gus had going on in January is in much better shape.  The bad news is that the stricture at the terminal ileum is no better AND he has another new stricture forming.  Looks like surgery will be our next stop.  Most likely the first week of April.  My one condition...he HAS to be home for his birthday!!!

2nd dose of Stelara administered while he was in the hospital.  Fingers, toes and shoelaces crossed that it will be the remedy will help Gus achieve remission.  Injection went a little better this time.  The gave it in the arm, instead of the leg.

Home again tonight.  Sleeping in his own bed.


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## Sascot

Glad you are home - hope it starts to help soon.  I gather you are talking about trying the EN route to help him.  You could always tell him about my son - he was 12 when he did the  8 weeks EN via an NG tube.  He went to high school with it in - as far as I know people were sympathetic and never teased him.  He also managed to play football as well with a rugby helmet to keep the tube safe :smile:.  We kept doing everything - if we went out I took a cool bag with our "meal" of EN and gave it to him where ever we were.


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## DustyKat

Good luck with the Stelara! Fingers, toes and everything else crossed! :ghug: 

Good to hear the inflammation is settling, yay! How much bowel is affected now and will they be able to remove all active areas with the surgery? 

Dusty. xxx


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## Livilou

Hello vtfamily! So sorry that Gus had such a rough week, I'm glad that he is home and sleeping in his own bed! My daughter had a small bowel resection at age 13 and did very well. Hopefully Gus will feel much better once those nasty strictures are gone, and the Stelara will keep inflammation at bay....hopefully get him to remission (fingers, toes and everything else crossed!) Does your ped GI think that Stelara will help with stricturing disease? I know that sometimes other biologics will begin to heal the mucosa so quickly that the strictues could actually become worse. Hopefully now that Gus has had a second dose, it will kick in soon. The fact that overall inflammation has decreased on the MRE results is great! We are still in the appeal process with our insurance company to approve Stelara....getting closer though. Liv also has some mild narrowing at her resection site so I am hoping the Stelara will help prevent that from getting worse. Actually, my ped GI was discussing loading doses for kids yesterday. Liv is 107 lbs and they are recommending she start with 90mg, as they did in the study. Just curious about your son's dose, is he getting 45mg or 90mg? Thanks, and I will continue to follow Gus's progress. So glad he is feeling better.                              Kim


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## vtfamily

Sascot,
Thanks, we are glad to be home too.  Just in time for Spring Break.  No school work to worry about!  

I think you mean enteral nutrition via the NG tube.  Gus does not have an NG tube that goes through the nose into the stomach.  He has a GJ-tube located in his belly.  The "G" part goes directly into the stomach.  The "J" part goes directly into the jejunum part of the ileum (intestines).  He as both the G and the J because he has a very tight stricture in the duodenum and the dual tube give us more options.  He has had it for over a year and has had a lot of success with it...including being able to attend a special summer camp for kids with Crohn's and UC.  We use a pump to push the enteral nutrition (we use EleCare amino acid formula) overnight.

Gus "loves" his G-J tube because everything can go through there...liquid medicines, contrast for MREs, bowel prep solutions.  He is sooooo happy he doesn't have to drink any of that stuff any more!

Most recently the PICC line was put in so he could begin TPN feeds.  His stricture at the terminal ileum is really causing problems and his gut has needed complete rest.  The TPN give 100% nutrition and it completely bypasses the digestive tract, so it is helpful in that way.  The real trick is convincing a child not to eat anything!

We too do our best to maintain as normal a schedule/routine as possible.  Even with all that has happened in the last three months...we still plan to go skiing next week.  Gus can't wait to ski...PICC line, G-J tube and all!

Cheryl


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## vtfamily

DustyKat,

It's going to be an interesting surgery.  This will be his second bowel resection.  The first was three years ago and they took about 35cm.  They know they will need to take at least 25cm this time.  It will be tricky because the stricture is located close to the ileocecal valve.  (http://www.answers.com/topic/intestine)  Valves always make things more touchy.  Plus, there is the new stricture.  They will look at it and remove it, if need be.

As if all of that wasn't enough...they are going to look at redoing the duodenal bypass that was done last year.  One of the loops of the bypass has already strictured and the other loop is at an odd angle.

Good thing my son's nook connects to the hospital wifi and I can stream Netflix while I wait!  :thumright:

Cheryl


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## DustyKat

Ah okay. Both of my children have had ileocaecal resections but no other involvement outside of the terminal ileum. 

It surely will be a tricky op, bless him. :heart: I hope all is successful Cheryl and this op is able to give your lad some lasting peace and relief. :hug: 

Good luck! 

Dusty. xxx


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## vtfamily

Dusty,

The really crazy part is that none of his strictures have been anywhere near each other.  so, I can't even say that he is stricturing due to scar tissue from the first resection, or the perforation, or the duodenal bypass.

Gus is definitely a zebra with unicorn tendancies!  LOL

Thanks for the good wishes!
Cheryl


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## DustyKat

He surely is Cheryl! :lol: But a special kid like Gus must have an equally special Mum. You are doing great job Cheryl and I know you feel lucky to have a lad such as Gus and he is equally lucky to have you have as his Mum and advocate. 

Onwards and Upwards! 

Dusty. xxx


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## CarolinAlaska

Here's wishes for a grand day skiing.  My dd hides at home as much as possible due to her NG tube.  We had close family friends over yesterday and she made an appearance, but then went and hung out by herself in her room (didn't even want to play games with us ).  Oh well.  I'm glad your son can ski without restrictions!


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## mugsymagoos

Hello!  

My 17 year old daughter will also be starting Stelara very soon.  She went to her follow up appointment at the Mayo Clinic today for a colonoscopy, and her colon does not look any better.  She has been on Cimzia/6mp combo.  Dr. Cangemi called in for the Stelara today and our Pharmacy called and said our insurance company (United Healthcare) approved it thank goodness, so they will be getting it in tomorrow.  She will be starting out with 90 mg.  I really hope this helps her.  We have tried Remicade, Humira and Cimzia along with everything else under the sun!

Therese


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## vtfamily

mugsymagoos said:


> Hello!
> 
> My 17 year old daughter will also be starting Stelara very soon.  She went to her follow up appointment at the Mayo Clinic today for a colonoscopy, and her colon does not look any better.  She has been on Cimzia/6mp combo.  Dr. Cangemi called in for the Stelara today and our Pharmacy called and said our insurance company (United Healthcare) approved it thank goodness, so they will be getting it in tomorrow.  She will be starting out with 90 mg.  I really hope this helps her.  We have tried Remicade, Humira and Cimzia along with everything else under the sun!
> 
> Therese


That's amazing.  I'm happy your insurance approved the off-label use.  So many people are having difficulty getting the green light.

Let me know how it goes for your daughter.  Gus is using the 45mg dose (12 yrs old, 75 pounds).  He has already had dose #2.  Next dose will be in 12 weeks (June-ish).

Gus GI doctor is watching carefully.  We had an MRE in January, tons of inflammation.  Then another in January, due to continuing pain.  Second MRE showed that inflammation was better AND the formation of a new stricture.  Was it there before or not???  The inflammation was so bad in January, we may never know for sure.

Cheryl


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## Crohn's Mom

Hi Vtfamily 
I don't know how I missed this thread for so long, but I just want to let you know how much I appreciate it.  I am very interested in this Stelara.
I truly hope it works for your son, it seems he's been through too much already ! :hug:


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## Livilou

@mugsymagoos,   We have United Healthcare/Oxford and they are denying us! We are hopefully getting help from Johnson & Johnson's Patient Assistance Program, they might be able to help us get the Stelara until the insurance company agrees to cover it. So frustrating! I hope these kids do well, I will be following these threads closely! Good Luck!               Kim


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## CarolinAlaska

mugsymagoos said:


> Hello!
> 
> My 17 year old daughter will also be starting Stelara very soon.  She went to her follow up appointment at the Mayo Clinic today for a colonoscopy, and her colon does not look any better.  She has been on Cimzia/6mp combo.  Dr. Cangemi called in for the Stelara today and our Pharmacy called and said our insurance company (United Healthcare) approved it thank goodness, so they will be getting it in tomorrow.  She will be starting out with 90 mg.  I really hope this helps her.  We have tried Remicade, Humira and Cimzia along with everything else under the sun!
> 
> Therese


How long was your daughter on each of those meds before she had to move on?  How long has she been on 6 MP?


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## AZMOM

Im VERY interested in Stelara. Thank you for the thread. This drug could have a HUGE impact on those the can't have TNF blockers!!! 

J.


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## mugsymagoos

Kayla's doctor and nurse were shocked that United Healthcare approved it immediately!  They said they have no patients that have gotten the Stelara that quickly and we are so thankful, believe me!  Not sure why United would approve it for her, and not for others that have United??  

Kayla was on Remicade for a few months a few years back and was doing well, but then had an allergic reaction.  Started Humira after that for about 4 months and then it stopped working.  Was on prednisone for a while, methotrexate and everything else under the sun.  When we started seeing Dr. Cangemi at the Mayo clinic, he put her on the Cimzia/6mp combo.  It has been about 7 mos and she had another colonoscopy and her colon looks worse if anything.  That is why we are moving on to Stelara.  The biologics really did not work well for her, so I am hoping Stelara will!!

Will keep everyone posted.  Did not have the first injection yet...waiting to hear back from our Dr.'s office on how to proceed, although I do have the injection sitting in our fridge waiting!

Therese


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## Crohn's Mom

That's great news that it was approved so quickly Therese! We also have United so I'm happy that if it comes to Gab needed to switch to that at some point (maybe sooner than I think lol) then I know we won't have any trouble either.  Seems like you and I have more and more in common ! :thumleft:


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## mugsymagoos

Yes, Donna was shocked that United approved it the very next day!  She said Dr. Cangemi usually has to petition a few times (could take weeks) before they MAY approve it!  I hope this works...she has been feeling absolutely awful.  We are on spring break but school starts back next Tuesday.  

Therese


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## vtfamily

I'm not sure if it's the Stelara or not, but...we just returned from our Spring Break vacation and Gus did really well.  He spent four days skiing!  No real pain.  He felt a little "icky" a couple of times, but nothing major.  I can't begin to recall any period where he exerted anywhere near as much energy, ate what he wanted and didn't end up in pain.

It's a joy to see my boy so full of life again!


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## DustyKat

How wonderful for Gus, and for you to be able to enjoy it!  

May it keep on keeping on! 

Dusty. :heart:


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## polly13

Delighted Gus enjoyed his break.


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## AZMOM

Yay!!!!!


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## Livilou

That is wonderful news!!!!


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## Crohn's Mom

Fantastic news !


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## my little penguin

Woohoo
So glad it seems to be working


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## CarolinAlaska

I'm so glad to hear it and may it continue forever!


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## Jmrogers4

Fabulous news! Glad Gus had a great time.


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## vtfamily

About the time Gus was due for his next dose of Stelara...we encountered some complications.

First, he developed a bacterial infection and went into septic shock.  Had nothing to do with the Stelara.  Most likely cause, fibrin clusters (small blood clots) around his PICC line.  Docs sprang into action and took care of it quickly.

Second, his strictures were causing a tremendous amount of pain and we made the decision to remove the stricture surgically.  The infection was cleared up in time for us to keep our original surgery date.

So, the big question with the Stelara was...should we give it before or after the surgery???  Circumstances ended up dictating that answer.  He will receive the next dose of Stelara when we are discharged from the hospital.  That will put it at about a week and a half after surgery.

I am really hopeful that Gus will finally have a, much deserved, remission!!!  Between the Stelara and the surgery, I hope we will have some peace for a nice long time!!!

The next big challenge will be catching-up on four or five weeks worth of school work!  Principal said we had the summer to catch up, but I really want him to be totally free this summer.  He deserves it.  He needs it.


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## vtfamily

Time for an update.

Gus' surgery to remove the stricture at the terminal ileum went well.  He started Stelara just before the surgery and has continued it since the surgery.

The medical community is still trying to figure out dosing and scheduling.  Instead of receiving his injections every 12 weeks, the dosing has been moved up to every 4 weeks.

Gus is looking good, feeling good and enjoying food again.  All things I haven't been able to say for a long, long, long time.

I don't want to jinx anything, but I'm feeling pretty good about Gus' chances for a break from his Crohn's...dare I even say...a remission!!!

Next dose due next week.

Will continue to post updates along the way.

Happy summer everyone!


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## vtfamily

mugsymagoos said:


> Hello!
> 
> My 17 year old daughter will also be starting Stelara very soon.  She went to her follow up appointment at the Mayo Clinic today for a colonoscopy, and her colon does not look any better.  She has been on Cimzia/6mp combo.  Dr. Cangemi called in for the Stelara today and our Pharmacy called and said our insurance company (United Healthcare) approved it thank goodness, so they will be getting it in tomorrow.  She will be starting out with 90 mg.  I really hope this helps her.  We have tried Remicade, Humira and Cimzia along with everything else under the sun!
> 
> Therese


Was wondering if your daughter started Stelara and how it's going??
Cheryl


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## upsetmom

Thanks for the update!!!
I'm glad things are going good .....I hope it lasts forever...:ghug:


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## vtfamily

upsetmom said:


> Thanks for the update!!!
> I'm glad things are going good .....I hope it lasts forever...:ghug:


Thanks!  Me too.  But I'll take a summer "off" if it's all we get!  
Cheryl


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## DustyKat

Just read your other post and I am still smiling! 

Onwards and Upwards! 

Dusty. :heart:


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## ChampsMom

Great news!


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## mugsymagoos

Cheryl,

Kayla has had two injections of Stelara and is getting the third injection today.  Four weeks apart and 90mg!  She is doing great!  No side effects, feeling fine, eating etc.  We go back to the Mayo clinic in Jax next week for her followup since starting Stelara!

Therese


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## vtfamily

mugsymagoos said:


> Cheryl,
> 
> Kayla has had two injections of Stelara and is getting the third injection today.  Four weeks apart and 90mg!  She is doing great!  No side effects, feeling fine, eating etc.  We go back to the Mayo clinic in Jax next week for her followup since starting Stelara!
> 
> Therese


Therese,

That's great!  Gus is getting 45mg every 8 weeks.  He weighs 80 pounds (finally...was 65 pounds forever).  Since the med is still in trials, our doc(s) want to proceed cautiously.

I'm glad your daughter is doing well on it!  Can't wait to hear more.

Cheryl


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## vtfamily

Just how "good" does Gus feel???

We spent an hour at a trampoline party tonight.  Trampolines all over the floors and walls.  A lot of jumping, trampoline dodge ball, foam pits, etc...

He had a blast!  Energy lasted the entire time.  Ate before we went to the party AND wanted to eat again after!  HOLY COW!  I can't remember when he actually wanted to eat so often (and without pain) and had so much energy!


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## Livilou

Yayyyy! That is so great to hear!!! May it last forever!!        Kim


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## vtfamily

Well, Gus has complete his first week back at school...with NO problems!  Whew!  He is also trying out for the volleyball team.  This is huge since he hasn't had the energy or stamina to even attempt real sports in about 8 years.  Not sure if he will make the team, but I am so proud of him for getting out there!


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## mugsymagoos

Great news for Gus!!  Kayla has been doing great on Stelara also!  She is up in Gainesville at UF for College and is feeling really well!  She now gets the Stelara injection every 8 weeks (90mg).  I am so hoping that is gonna keep working!!


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## Sascot

Fab news! :dance:


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## Sudsy

Wow.  What a ride you and Gus have had....So glad to hear that he is doing so well now.  May it continue!!!!


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## vtfamily

I can't believe the first quarter of the school year has come and gone.  Even better, without any Crohn's events either!!

Gus goes for his first upper and lower GI scopes this week since his surgery.  I have mixed feelings about it.  I'm hoping they don't see any new affected areas.  At the same time, it is always so difficult to pin-point his problem areas that, if there is something new going on, I don't want them to miss it.

It would be easier to relax about the scope if he wasn't already showing sketchy/intermittent signs of active disease.


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## DustyKat

Good luck with the scopes Cheryl! :goodluck: 

I hope all proves to be well but as you say, if there is something grumbling away there I hope they pick up! 

Dusty. xxx


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## upsetmom

Good luck with the scopes!


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## my little penguin

Good luck!!!!


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## Jmrogers4

Good luck


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## Sascot

Good luck for the scopes!


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## kimmidwife

Good luck with the scopes!!!


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## vtfamily

Sorry for the delay in reporting on the scopes...nothing is ever simple with Crohn's kids, is it?!

Generally speaking, the scopes went well.  No signs of inflammation, no ulcers, no redness.  Yippee.

However, and there always seems to be a however, the doctor could not get the scope past the colon and into the terminal ileum because of a blockage.  This is the same area Gus had re-sected back in May.  He tried several different ways to push the scope through, but no luck.  The mystery was trying to figure out how anything is getting through and why Gus isn't in extreme pain.

This really threw his GI doc for a loop!  He was even thinking that Gus might be looking at a colostomy/collectomy bag in the next few (3-5) years.

We all remained calm and prepared to take the situation step-by-step.

First step, an MRE.  The MRE showed everything is "normal."  Really?  Normal?  I guess the radiologist and I have very different definitions of "normal."  I take it to mean that digested material is making it's way through.  The GI doctor also talked to the surgeon and learned that the re-section was done as a "side-to-side" (rather than an "end-to-end") astimosis.

We still need to figure out how we are going to get a good look at the terminal ileum in the future, but for now...I'll take what I can get.  Gus is not in pain and has not missed any school days.

I'll explore the issue with the GI doctor further the next time Gus has an appointment.

Until next time,
Cheryl


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## vtfamily

Haven't heard any updates in a while...how are the kids doing with Stelara?


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## vtfamily

mugsymagoos said:


> Great news for Gus!!  Kayla has been doing great on Stelara also!  She is up in Gainesville at UF for College and is feeling really well!  She now gets the Stelara injection every 8 weeks (90mg).  I am so hoping that is gonna keep working!!


Looking forward to an update on how Kayla is doing over the break!

I'm so glad she is able to enjoy college.

Cheryl


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## Livilou

Hi Everybody! Things have been pretty rough around here, especially over the past 2 months or so. Liv has been on Stelara since May and had been tolerating the drug, looks fabulous and up until 2 weeks ago, was feeling good. Her labs have been slipping since August, and pretty steadily. Ferritin, Vit D levels low, FC over 1200, and her TSH levels are climbing. She is obviously not absorbing her thyroid hormone replacement, and Endo claims that because she has gained weight and "doing well" on the Stelara, she probably just needs more hormone...well she is now on a dose of 300mcg of Synthroid and her TSH is 95 this past week (supposed to be less than 1.0!!) If we are not able to suppress her TSH, she has a 30% chance of the cancer recurring...in the lymph, bone, lungs, anywhere. We can no longer do a wait and see approach, I fear the Stelara is not keeping CD at bay and it is time for change. Obviously she will be scheduled for scopes when she is home from college and I discussed with GI the possibility of adding methotrexate to Stelara, or perhaps increasing the frequency of the dose, she gets an injection every 8 weeks. Not sure if insurance company will agree with that plan, but we shall see. Also, in the past 2 weeks Liv has had some abdominal pain, rectal bleeding, and has something going on in her rectum. She said something is protruding, not sure if it's a hemrrhoid, perianal skin tag or fistula/abscess??? She also woke up with a red, swollen lesion on her calf 3 days ago...probably Erythema Nodosum...went to the local ER because she was having difficulty walking on it and thought maybe it was a bug bite that was infected. Well, the ER doc lanced the wound, and there was nothing there! They started her on Keflex...great, with a history of c-diff twice this year! Md's checked her rectum and told her it looked like a scrape with a scab on it, that was probably infected and is now healing???? This is so frustrating for me because she is 5 hours away, I feel so out of control. She will be home in 8 days and has an appointment with her GI.My 20 year old son with CD is also flaring and we had to increase his dose of Remicade this month, also started on a 6 week course of Cipro/Flagyl..he is scheduled for scopes Dec 17th. Needless to say my head is spinning and of course I am always sick with worry between the 2 of them.....interestingly, my 74 year old Mom (also has CD) ate some trail mix 4 days ago and aggravated her stricture...she awoke in the middle of the night to use the bathroom and my Dad found her an hour later lying on the floor moaning in pain and vomiting. I went through her cupboard and cleared out the remaining bags of trail mix, peanuts ect....yup, the fun never ends around here!  
I do check in frequently to check on everyone's kids...I'm sorry, I don't always have advice to offer, but I do worry about all of these kids, and I love to hear about positive updates. I am of no use when things are bad here (seems it's been brewing for months)! I continue to pray for all of our children/loved ones and everyone who is suffering from this monster of a disease...please God, a cure!!!!!        Kim


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## xmdmom

((((HUGS))))) to you and your family, Kim.  You are certainly dealing with a lot!

300 ug is a big dose-- what was her previous dose?  It may help to know that Thyroxine can be given parenterally iv, im and sc   (http://www.ncbi.nlm.nih.gov/pubmed/23569562) when absorption is a problem.

Is there any possibility that now that she's away, she's forgetting some medication at times?  (I'm sure she knows how important the medication is, but even with that knowledge, many adults have difficulty taking all their meds.)

Really really hope things improve for you and your family soon!


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## Livilou

Thank You so much xmdmom! Her endo is accusing her of not taking synthroid properly, but when she was home, I personally made sure she took it early in the am, on an empty stomach, with water ect... and her TSH was still climbing,however, she did admit to drinking coffee with her roomate before morning classes...with milk approx 1 hour after synthroid, so maybe that is affecting absorption a little. Endo has switched her over to tirosint, levothyroxine sodium in a gel cap, apparently easier absorbed and used in many people with GI disorders. Her previous dose before the last labs was 250mcg for a TSH of 50..so levels have almost doubled in 4 weeks! I did ask endo about sublingual T4 and even called a local compounding pharmacy. I had to mention the tirosint to the MD, she had never heard of the drug, even though it was on her formulary to electronically prescribe it! So tired of chasing numbers, and once her gut inflammation calms down, worried about her TSH tanking with such a high dose!   Kim


----------



## xmdmom

Hope the gel cap is absorbed better.  If absorption improves drastically, she could be overtreated so beware of those symptoms (sweating, fast heart beat, feeling hot...).

((To get an idea of usual T4 dose, I saw this article  http://www.medscape.com/viewarticle/713972  (Table 3).  Premenopausal women need higher doses per body weight than other groups.  The average L-T4 dose to suppress TSH in premenopausal women seemed to be 2.98 ug per kg of ideal body weight. That is the average--some people need more and some less.))


----------



## Livilou

Thanks so much for the link...very interesting! Makes me feel a little better about her dose, maybe her 
 issue is not entirely related to her CD.  Kim


----------



## vtfamily

Kim...holy cow!  My heart aches for you.  I'm so, so, so sorry to hear about how difficult things have been for you and Liv...and your son...and your mom.

Liv is taking so many medications, it's almost like a symphony for wellness.  I can only imagine how difficult it is to determine which aspect is out of whack when things aren't going well.

You are in my prayers.  Prayers for peace.  Prayers for wisdom and clarity for the doctors.  Prayers for good health!

Even if everyone has to eat soup for Thanksgiving...I hope you have a wonderful holiday with the family around one table again!!

xxoo Cheryl


----------



## Livilou

Thanks Cheryl....So happy to hear that Gus's scopes were clean! I am hoping Liv is just flaring and this is another bump on the already rocky road, lol. Hoping adding methotrexate will boost the Stelara. Not sure what is left for Liv, besides steroids and more surgery at this point. She can't have any of the TNF blockers until she is 5 years cancer free. I hope you have a wonderful, festive and healthy Thanksgiving as well! Looking forward to hearing more good updates on Gus!              Kim


----------



## crohnsinct

Oh Kim! :ghug::ghug::ghug::kiss::kiss: You are so amazing!  Dealing with all you deal with and advocating for Liv the way you do?!  Truly an inspiration to us all!


----------



## vtfamily

Feeling a little sentimental tonight.  I've been afraid to really relax and enjoy the wellness Gus has had since he started Stelara.  Perhaps it's because he did so well on Remicade and we were really thrown for a loop when it stopped working.

He still has occasional bouts of gut pain, but they come and go pretty quickly.  We are trying to figure out what that means.  Hoping the pain is related to the G-tube and not the Crohn's.

So, the question of the day is...how do you know when your child is really in remission and when do you let your guard down?

Cheryl


----------



## Mehita

Is letting our guard down an option?? *LOL*

It is a really good question. I think my criteria would be normal labs, growth, and happiness. I can just look at my son and "know" if things aren't right. If I don't have that bad feeling for several weeks, I might let my guard down as well. He's never been in a good solid remission so I'm not sure really.

Good question though.


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## crohnsinct

Depends what kind of remission you are talking about.  Clinical remission?  Absence of symptoms.  Deep remission?  When scopes and biopsies confirm mucosal healing.  

O has been in a very good remission for a while now.  Growing, normal labs, absence of symptoms.  Sure there have been things that make me say hmmm but they could also be easily explained away as normal kid stuff.  

When do you let your guard down?  Funny you should ask.  I just read johnnysmom's post about her friends being sick of hearing her.  I pray that none of our friends ever have to worry that a cold might land their kids in the hospital or that they can just accept any meds a gp hands them without worrying about its affect on any of the other 4 or 5 that their kid takes. 

So to answer your question, I don't think my guard will ever be completely down.  Sure I have gone from red alert to blue but reserve the right to switch at a moments notice!


----------



## Livilou

@crohnsinct...thank you so much for the kind words! Everyone on this board has been inspirational to me as well! Thank You all for listening when I vent, offering such good advice and sharing your knowledge, and just helping me get through some very rough times!
 @ Cheryl...I don't know how to let my guard down! It is terrible, I try to relax when things are "quiet", but i am always waiting for the other shoe to drop. The "what if's" and uncertainties of this disease always keep me anxious! Strange, but I find that I am a little more relaxed since Liv has gone away to college...I am so proud of how well she has been managing the disease on her own. Oh, I am still a nervous wreck not having her under my watchful eye, but knowing she can do this without me (including taking a cab to the ER by herself , giving staff a complete history, without me jumping in to fill in the blanks, enduring all noxious and painful procedures without anyone to support her, and than safely making it back to campus after being discahrged at 1am!!)..and, she has been making and keeping all her appts. for injections, labwork, ect....I used to manage it all, and it feels so good when she tells me, "Don't worry Mom, I got this!" Not too shabby for a kid who just turned 18! My son is also leaving in January to do an internship at Disney World, and will be living on his own with his crohn's...ahhhh, so much change! Still no remission for my kids, and I don't think my guard will ever be completely down either...                                   Kim


----------



## vtfamily

@Livilou...Kim, you can tell you've done a great job managing your kids' disease(s) because they are well trained and know what to do when they are on their own.  You should be proud of that!


Allowing ourselves to "relax when things are quiet" might just be as good as it gets...and really that's not too bad either.  A lot of life can be lived in those quiet times.


----------



## DustyKat

@Livilou - My heart goes out to you Kim…:ghug: You surely do have a full plate but my goodness, how well you manage that plate! Kudos to you mum, you truly are doing a brilliant job. I hope more than anything that things settle for your two, no doubt you are all well overdue for a break! :Karl: 

@vtfamily - Hey Cheryl…:hug: I too don’t think I ever quite let my guard down.  :lol: My two are in remission…a combination of clinical and objective markers and just seeing them and knowing by they way they act, walk and interact that all is well. Admittedly I do more relaxing now and as each day, week and month passes the thoughts of Crohn’s becomes just a little less all consuming but deep down that spring is still wound ready to thrust me into action at the first sign of trouble! Boing!  

Dusty. xxx


----------



## vtfamily

As much as Gus has had a fabulous year at school...no missed classed, no days in pain at home, and best of all, no hospital days...he has had a couple of pain events in the last two weeks that have been a little concerning.

First a week ago Friday, I found him lying on the ground crying when I picked him up from school.  I asked what his pain level was.  He said a "10."  It must have been pretty bad, because he never says his pain is that high.  Usually plays it off as a 5 or 6.

Then yesterday (Friday again), his music teacher said he had a bad episode.  Her description: "it looked like Gus was shanked in the side and he dropped to the floor."  In class, he dropped to the floor in pain!  I asked him what his pain level was and he said...."5," I'm thinking the episode sounded more like a 7 or 8.

These pain episodes come on suddenly and end just as quickly.  The pain is located around his g-tube site and the doctor is stumped. All we can do right now is start collecting "data" (duration, severity, frequency, etc) and let him work through it.  Helpless mamma is not a role I like.

Thanksgiving break is here and we are all ready for a little down time.

Happy Thanksgiving everyone.
Cheryl VT


----------



## Farmwife

When he has these pains do the spread?

How does the g-tube look? Any discharge?


----------



## vtfamily

Farmwife said:


> When he has these pains do the spread?
> 
> How does the g-tube look? Any discharge?


Belly soft, no discharge, no crust, no redness or irritation...just pain.  He said that the pain does radiate out a little, but the g-tube is the focal point.  He describe the pain as something sharp and pointy pushing a boulder out through his g-tube.

Checked the g-tube, looks fine and is inflated properly.  Length of tubing seems fine, still has a little "wiggle room."

Ideas?


----------



## my little penguin

how about when you flush or draw out fluid?


----------



## Farmwife

Ok, some theories. 

Does he gastritis? Can you ask his doc if maybe some tums or quick acting acid reducer might help? Maybe even a PPI?

 Does he have gallbladder issues? I suffered for YEARS (20) with what I believe to be ulcer pains. It was right where my stomach was. Over time the pains that would last minutes to an hour kept lasting longer and longer. One day my hubby had enough and to the ER we went. I told the nurse how the pain starts in the front and goes to the back. She said that's classic gallbladder attack. I had it removed and problem gone.

Can pancreatitis cause these sharp pains? Hopefully someone else might know?

Last but not least, could Crohn's be popping up around the g-tube?:confused2:
 Spooky1 are you around? I believe you had Crohn's pop up around your g-tube?


----------



## vtfamily

MLP - no problems when giving feed.  Other than that, there are no flushes or draws.

Farmwife - will investigate your suggestions...anything is possible.  As for Crohn's around the g-tube, he had a scope in Oct.  GI got a good look all around the stomach and g-tube area, no signs of active disease.  Yes, I know that status can change in an instant.

Part of what makes the pain situation difficult is that there doesn't seem to be a food trigger, or stress trigger, or any common trigger.  The episodes are so spread out that it is difficult to know for sure if they are connected or separate.  These two episodes a week apart are the closest he's had.  I've even considered adhesions as a possibility.

The best I can do for now, is remain vigilant and take notes.  
Cheryl VT


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## vtfamily

We were finally able to relieve Gus' gut pain by venting his G-Tube.  Hooray!  So simple and easy.  Kind of a "duh" moment.  When your child is in extreme pain you never think of it as gas that is locked in the stomach!

I am so thankful that he has the G-Tube to make venting a possibility.  If he didn't have the G-Tube, the gastritis would still cause the same gas build-up and we wouldn't have any means to relieve the problem. 

Gus is six months out since his surgery and almost a year since starting his Stelara treatments.  Nothing but GREAT news there!  No missed school days, no major issues, no hospital days, no surgeries!  This is the best six month period Gus has had in years!!!


----------



## DustyKat

What a brilliant update Cheryl! :dusty::dusty::dusty: Thanks so much for posting.  

I am so happy for you and your lad and I have everything crossed that this lasts a very, very, very long time! :goodluck:

:mademyday:

Dusty. xxx


----------



## Farmwife

vtfamily said:


> We were finally able to relieve Gus' gut pain by venting his G-Tube.  Hooray!  So simple and easy.  Kind of a "duh" moment.  When your child is in extreme pain you never think of it as gas that is locked in the stomach!
> 
> I am so thankful that he has the G-Tube to make venting a possibility.  If he didn't have the G-Tube, the gastritis would still cause the same gas build-up and we wouldn't have any means to relieve the problem.
> 
> Gus is six months out since his surgery and almost a year since starting his Stelara treatments.  Nothing but GREAT news there!  No missed school days, no major issues, no hospital days, no surgeries!  This is the best six month period Gus has had in years!!!


:facepalm: I didn't even think about venting. I have to vent Grace's once in awhile. It's a life saver. Does he know how to do it at school? That might help.
I'm so glad he's doing well.:ghug:


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## kimmidwife

Cheryl,
So glad you were able to quickly find the problem and so glad he is doing so well. Hope it only continues!!!


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## vtfamily

FarmWife, yes, Gus knows how to do the venting by himself.  Just need to get some extra tubes to keep at school and in the car.


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## Jmrogers4

Wonderful update.  Hope it continues for a very long time.


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## vtfamily

What's a Crohn's thread without a little poop talk??

Gus had a biggie the other day...probably 2+ days worth.  Anyway too big to flush right away, which is the reason I actually had the opportunity to get a good look at it.  I noticed something very odd.  It looked like he had paper embedded in the poop.  A few small "sheets" were sticking out (and up) from the stool.  Note: the boy did not eat paper.

Took pictures and sent to GI and asked if I need to get a sample.  His response: "Interesting.  Not sure what to make of it.  Don't keep sample.  Do keep eye on."

Did a search and came up with a few likely possibilities: 1) mucosal lining, 2) lymph node, 3) parasite.

It did look like a sheet of tissue, so mucosal lining seems most likely.  My imagination takes me in two directions.  One is a totally normal shedding of the lining, as most skin cells shed.  Two is top layer shedding because lower layer(s) inflamed and under auto-immune attack.

Any thoughts?  Any experiences with anything like this?  We see the doc in Feb.  Will probe him further then!


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## SupportiveMom

Thank you VT for all of this information. Please continue to update on his progress. 

As you have responded to Dani's issues, I am watching this closely knowing we are currently out of options approved in Canada and are now looking at other options knowing that surgery isn't an option due to all the locations of the Crohn's in her digestive tract.

May Gus have many more days of energy to enjoy all that life can offer him.


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## Brian'sMom

I too am watching this thread because it seems we are at the end of Cimzia. (Local doc agrees Mayo Doc won't admit that yet). Thank you for all your updates. I hope this recent discovery turns out to be nothing. Is your son still on total EN thru G tube? My son is scared he'll be doing the ng tube forever. Its in his nose-stomach. Since July 25th He was doing it every night... and Dec 9th went to 24/7. So total of 6 months. Our MRE is scheduled for Feb 1st to see if he's a surgical candidate. (His TI also) But he has had issues in his rectum also. I'm scared.
He vomits with hard cramps... and this weekend he vomited up the tube sat... its sun morning, he's kinda just refusing to put it back in. He'll be 14 Feb 18th and I think he's starting to become stubborn with it all.


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## vtfamily

Brian'sMom said:


> Is your son still on total EN thru G tube? My son is scared he'll be doing the ng tube forever. Its in his nose-stomach. Since July 25th He was doing it every night... and this weekend he vomited up the tube sat... its sun morning, he's kinda just refusing to put it back in. He'll be 14 Feb 18th and I think he's starting to become stubborn with it all.


Oh those stubborn boys!  FYI...Gus will be 14 in April.

Except for a hospital stay, Gus has not had an NG tube.  He did have a PICC line last year for about three months.  The purpose was to give his gut TOTAL rest, so he was not allowed anything but water by mouth at that time.

Gus eats what he likes and as much as he can.  He also has, and has had for about two years, a g-tube.  It is a tube that was inserted directly into his stomach through the abdomen.  Until very recently, he ran the feed overnight.  Our current method is to use a large syringe to push the feed in quickly at breakfast and dinner.  He prefers that to being connected to tubes overnight.

Gus genuinely L-O-V-E-S his g-tube.  It is an effective way to give him the elemental nutrition and (more importantly) calories.  He especially likes that liquid medicines and contrast for CT Scans and MRIs can go through the tube, instead of drinking it.

The g-tube affords him plenty of privacy because it is covered by his clothes.  No one has to see it.  It does not interfere with his favorite activities: swimming, skiing, biking, roller coasters, etc...

From your description, it sounds like your son may also need a period of complete gut rest.  You might want to discuss a PICC line and TPN with your doctor.  It does take some care.  It can be a little scary since the line goes directly into the veins, but it will give his gut a chance to heal and get a better picture of the problem areas.  Gus was able to ski with his PICC line in last year.  We found a cover that allowed him to take showers and swim too.  The worst part for your son will be not eating anything while he is on the TPN.  The body is fed, but the mouth and stomach still want to be satisfied too.

Hope this is helpful.  Maybe the boys should compare notes.  LOL
Cheryl VT


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## vtfamily

SupportiveMom said:


> I am watching this closely knowing we are currently out of options approved in Canada.


Remember, Stelara is still "off-label" here in the U.S. too for use with Crohn's.  Many insurance companies are not approving the off-label use yet.  It is in clinical trials for adults, but I don't think trials are under way for kids yet either.  It is a wonderful and rare moment when people like us get the approval for off-label use.

Is Stelara approved for psoriasis in Canada?

Your daughter might also benefit from a "total gut rest" conversation with your doctor.  Wouldn't it be wonderful if complete gut rest with TPN running in a PICC line could calm her inflammation enough to find one or two areas that could be addressed with surgery or balloon dilation!?

Best wishes to you.
Cheryl VT


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## SupportiveMom

We did the TPN in the hospital with a PICC. Took a few weeks to start working. We stopped TPN before she was discharged but kept the PICC for about a month after. Had a hassle to get it flushed, but better than doing it by IV. TPN in IV was painful! 

Based on the amount of blood she has back now in her stool we may not have much choice. Dani doesnt fight me on much but her and no food is the worst for her. She would opt for the blood any day before you take away food. brian's mom, I hear you on the tube, dani flat out refused it with her doctor said she won't even consider it. This is where their age is to our disadvantage.

I'm going to check if Stelera is approved in Canada for anyone or anything. Thanks for all the info VT


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## vtfamily

Agreed that it is gut-wrenching (no pun intended) to watch your child go through a period of being deprived all foods/drinks by mouth.  Last year was our first experience with that (for more than a three day bowel prep session or surgical recovery period).  It was difficult, but totally worth it in the end.

I learned to do the PICC line maintenance pretty well.  It was easier than I thought, once I got used to it.  I even figured out how to take a "repair-Gus-kit" skiing with us, just in case.  Still, there are those times when the line just won't flush.  I established a protocol with our clinic to slide us in whenever that happened.

We have a friend who was on total gut rest and TPN for the better part of eight years...yep, I did say eight years!  She has been a huge encouragement for us.  I figure it she can handle it for years, then we should be able to figure out how to manage a few months.  At least I can send Gus into another room at meal time.  She's the mom and has to cook the meals...no escape from the sights and smells.

Gus wrote a personal narrative earlier this year about his PICC line/TPN/gut rest period.  I'll see if I can post it next...

 Cheryl VT


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## vtfamily

This is Gus' personal account of his experience.  Feel free to share with your teens!

"My Doctor’s Evil Orders" by Augustus VT

     Have you ever been told that you are not allowed to eat any food, not even a piece of gum?  Do you suppose that you could go one week, or two weeks, or even a whole month without eating a single bite of food?  Imagine sitting at the dinner table, while your family cavalierly enjoyed eating your favorite dishes, but the only thing allowed to cross your lips is plain, bland, empty, boring water!  This happens to me frequently because I have Crohn’s Disease.  Crohn’s causes horrendous pain in my intestines.  That is why I eat only small portions of food at any meal.  On top of all of that, there are times when my doctor will order me to eliminate food altogether.  I call this “my doctor’s evil orders.”

     In February 2013, I sat in Dr. Kim’s office, pretending not to listen, while he talked about the seriously grim state of my gut.  Every cell in my body froze in horror when I heard Dr. Kim’s plans.

     Dr. Kim said, “Gus needs surgery.  However, his intestines are too inflamed and the surgeons won’t operate until the inflammation is resolved.”

     My mom asked, “Since the medications aren’t working, what are the other options?”

     “We’re going to insert a P.I.C.C. line in his arm. It’s a feeding tube that goes directly into the bloodstream and will give him the nutrition that he needs, bypassing the digestive system, so that his gut will have a chance heal.  He won’t be able to eat anything, during this process,” Dr. Kim replied.

     My voice cracked as I asked Dr. Kim, “How long do I have to go without eating? I can have hard candies to suck on at least, right?”

     Dr. Kim replied sympathetically, but firmly, “Indefinitely.  You cannot eat anything.  You’re only allowed to drink water.  I’m sorry, hard candy and gum are out of the question.”

     I sat there in stunned silence.  I felt like a condemned man, being dragged into a cold, dark dungeon.

     The P.I.C.C. line was inserted few days later, on February 22nd, and I stopped eating food.  By the end of the second week my desire for food was overpowering.  I wanted food!  Every single day, I begged my mom to allow me to eat.  She felt bad for me, but did not budge, not even a little.  This went on through March and most of April.  The light at the end of the tunnel became brighter as each day passed.  April 22nd was the day I planned to ask Dr. Kim for the freedom to eat again.  Oh, yeah!

     I never had a chance to ask Dr. Kim to release me from his “evil orders” because I went into septic shock and was admitted to the hospital on April 17th.  I was completely incoherent for two weeks and did not care about anything, especially food.  The good news was that my mangled intestines were healing.  I recovered from the infection and the surgeons were able to remove the significantly diseased section of intestine on May 4th.  A week went by and I started to feel better.  I wanted to eat!  I spent the following week in the hospital pleading with my mom, every doctor, and every nurse for food.  They all said NO!  It was torture!  I left the hospital under orders to wait three more weeks before I could taste food again.  I snapped at the two week mark.  I secretly stole hard candies and bits of bacon!  They were like a slice of heaven in my mouth and I savored every moment.  May 14th, 2013 was a joyous day for me.  It was the day I was told that I could eat food again.  Each bite of the meat tortellini I had for dinner that night felt like the first trickle of hot chocolate going down my throat and warming my tummy on a cold winter’s day.  It was pure happiness.

     It is hard to believe that I endured three months without eating any real food.  The only way I survived this ordeal was by drawing closer to God.  Food felt like a reward.  Knowing that the Holy Spirit is in my heart, protecting me, was the true reward.  I wondered if I was being punished.  In truth, He revealed Himself as a truly wonderful God.  I would have become depressed and gone into a dark place inside myself if I did not have faith in the Lord.  His unfailing love and guidance lit my way and enabled me to endure “my doctor’s evil orders.”


----------



## SupportiveMom

I'm going to share this with Dani. She will so understand this!


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## crohnsinct

He's how old?!  What a great writer!


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## DanceMom

vtfamily - Your son is an amazing writer!  I got choked up reading about his experiences and I think it would be awesome to share his writing with as many kids (and parents) as you can.  Maybe he could start a blog or submit his story to your local newspaper.  He's great!!


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## Jmrogers4

Oh My Goodness! What an amazing young man you have there.  That needs to be published somewhere


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## vtfamily

Thanks all.  He is 13 yrs old.  It was an assignment for his 8th grade English class.  They were instructed to write about doing something that they did not think they could do.  Length and all are part of the parameters.

When he was finished, I was pretty proud of him and thought if he could put a few more of these together, then we could turn it into a book.  He shared it with his GI doc.  He appreciated it too.  With your encouragement, I'll keep at it with him.  I think his next "chapter" could be something like "So This is What Normal is Like" or "Friends Getting to Know Me Again, Not Just the Sick Kid."

There should be chapters from the rest of us too.  My personal mommy guilt laden chapter would be about the year he spent trying to tell us something was wrong and how we fell back on parental favorites like "this is what we are having for dinner, eat it or go to be hungry."  His response still rings like an echo that won't go away in my memory, "But I Don't Like Dinner."  He was into his Crohn's treatment for a couple of years before I realized that my precious pre-schooler was doing his best to tell me something was really wrong.  Helping him is easy.  Forgiving myself isn't.  Focusing on what must be done now and looking to the future helps though.


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## crohnsinct

Parental Guilt can be a book all its own.  

Chapter 1 - I didn't notice 
Chapter 2 - I didn't pay attention
Chapter 3 - I didn't push hard or fast enough 
Chapter 4 - But they experts said IBS 
Chapter 5 - I picked the wrong med 
Chapter 6 - I have other kids?

and on and on!


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## SupportiveMom

I just had my Dani read Gus'piece. She really liked it!


----------



## Crohn's Mom

What a great story - he should definitely continue writing !  
Thank you for sharing.


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## vtfamily

crohnsinct said:


> Parental Guilt can be a book all its own.
> 
> Chapter 1 - I didn't notice
> Chapter 2 - I didn't pay attention
> Chapter 3 - I didn't push hard or fast enough
> Chapter 4 - But they experts said IBS
> Chapter 5 - I picked the wrong med
> Chapter 6 - I have other kids?
> 
> and on and on!


:ylol::ylol: Made me laugh!  Thanks


----------



## SupportiveMom

crohnsinct said:


> Parental Guilt can be a book all its own.
> 
> Chapter 1 - I didn't notice
> Chapter 2 - I didn't pay attention
> Chapter 3 - I didn't push hard or fast enough
> Chapter 4 - But they experts said IBS
> Chapter 5 - I picked the wrong med
> Chapter 6 - I have other kids?
> 
> and on and on!


I am so using this! Absolutely true!


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## Farmwife

What a great writer. Most adults cannot articulate the written word that well.

Yes CIC, I would read that book.


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## Brian'sMom

I cried when i read Gus' s chapter.  His story is very similar to Brian's with the no food and sitting and listenjng to how bad the area in bowel is.  Please read my new thread Its too long to put here also. Brian could only have water or Gatorade with een and now tpn thru pic line. He silently is just doing it. He can swish out his mouth but can't  swallow anything. Was Gus's septic shock from the picc line?

We would tell our son, "Eat! Thats why you are so thin. If you want to get bigger you know what you need to do". He was young...i think he didnt even know why he wasnt eating. He even told me last year when i was questioning how bad his cramps were, "Mom, everyone hurts a little when they poop. Thats normal, right? Do you not have even a little pain everytime?"  I don't. ... I'm sad for him. That's awful


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## vtfamily

BriansMom,

Yes, ultimately he did go into septic shock.  The docs explained we all have staph on our skin, all of the time.  It usually goes unnoticed...until it gets inside the body then it is serious, deathly seriious.  PICC lines do give staph that "window of opportunity."  That is why the  hygiene procedures are so important.  I have my suspicions as to when/how it happened.  If Gus ever needs complete gut rest and a PICC line again, I won't say no BUT I will most certainly have more questions/requests.  One of the important issues for us was that our local clinic cannot flush a blocked PICC line in a child.  Not in Peds, not in Urgent Care, not even in the infusion center.  We would have to drive 100 miles to the hospital for that.  Gus' line would work fine to infuse the TPN into his body.  It was the draw backs that were difficult.  I think it was those blood clots at the end of the line that gave the staph a place to grow.


I'll look into your thread!  It would be super if we could get Brian and Gus talking!!!

Cheryl VT


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## Brian'sMom

I don't understand, sorry. You mean your line would not draw back or the drawing back was the problem? Our supply company haven't acted like we will draw back...but hospital has and also has been doing that. I'm scared to go home but also am so tired of living in the hospital. Did something someone did at a clinic give the infection, or happen while at home. The tpn nurse here said to check his temp within hour of messing with line. If infection was introduced she said fever will happen by an hour or so.


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## vtfamily

Brian'sMom said:


> You mean your line would not draw back or the drawing back was the problem? Our supply company haven't acted like we will draw back...but hospital has and also has been doing that. I'm scared to go home but also am so tired of living in the hospital. Did something someone did at a clinic give the infection, or happen while at home. The tpn nurse here said to check his temp within hour of messing with line. If infection was introduced she said fever will happen by an hour or so.


Giving the TPN infusion was never a problem.  It always went in fine.

There are two opinions on drawing back.  One is don't do it because it pulls blood into the line, which may then clot.  The other is to do it to verify that a clot has not already formed at the end of the tube.  Hard to say which is "best."  Seems like two sides of the same coin to me.

My process was to flush both lines with saline first.  Then do a draw back, just enough to see a tiny bit of blood.  Then flush again.  Run the TPN infusion. Upon disconnection, flush again and put the heparin in the lines, and end by capping-off.

The nurses did a draw back on the line every time they touched it when we were in the hospital.  It wasn't part of our PICC line training, so I didn't do it for the first couple of weeks.  The first time the nurse couldn't do a draw back check during a dressing change after we came home, I was trained how to do it and was told why it was important.  So I did it from then on.

We had a nurse come to the house to do dressing changes until Gus returned to school.  I would take Gus to our local clinic for dressing changes after that.  Although there were a couple of times when I had to do the dressing change myself.  I was really afraid at first because there is so much at stake, but it really isn't rocket science and it was fine.

I can't be 100% positive about how he acquired the bacterial (staph) infection.  Checking temp a few times after doing the dressing change sounds like good advice.

My hind sight observation is that we need to be able to de-clot the line locally, when necessary.  Having to take him to the hospital (100 miles away) for a nurse to push a de-clotting agent through the line seems like an unnecessary step.

Hope that helps.
Cheryl VT


----------



## vtfamily

ONE FULL YEAR ON STELARA!

I almost can't believe it.  Today Gus received his eighth injection.  He told the doctor he can't remember a time when he felt as good as he does right now.  Doc is pleased with Gus' status.  Gus is happy.  What more can a mommy ask for!?!?

No telling how long this will last.  Just enjoying it moment by moment.  

Felling pretty blessed today.  Thank you Stelara!


----------



## DustyKat

Wow! That is fabulous Cheryl! :yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:

And how brilliant that Gus is feeling on top of the world! Bless his :heart: May it just keep on keeping on. Onwards and Upwards! :thumleft: 

:mademyday:

Dusty. xxx


----------



## Gmama

Cheryl, 
SO SO happy for you & Gus!!! Yes enjoy this!!!! It's so wonderful to hear that you are on the straight and narrow after the winding Rocky Mountain cliff you have traveled! It's been a long road that's for sure, but here you are.
And to have a happy boy who is feeling good...nothing will give mama a good nights sleep like that will!


----------



## crohnsinct

I LOVE that he notices it and appreciates it.  What a great kid!  

Since he is feeling so great can you ask for a clean room?  And if it's already clean then you can't ask for anything more...you have the perfect kid!  A tribute to great parenting I am sure.


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## Sascot

Great news. Long may it continue!


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## vtfamily

Saw the GI today.  Looks like Stelara has "stalled" as a Crohn's drug.   Gus continues to do very well with the Stelara, but a spin-off of Tysabri (affectionately called "Vido") is taking the lead in the anti-adhesion category and most doctors are going that direction.  In fact, anti adhesions may replace 6MP and the like!

We are going to stick with Stelara for Gus, but it is comforting to know that Vido will be ready IF he needs it in the future.   It's nice to have a plan "B" again.


----------



## Maya142

vtfamily - What do you mean Stelara has "stalled"? We were told the opposite - that Stelara works well in people who have failed Anti-TNFs and Vedolizumab works better in UC than Crohn's. Just curious because Stelara's probably next for my daughter.


----------



## vtfamily

Maya142 said:


> vtfamily - What do you mean Stelara has "stalled"? We were told the opposite - that Stelara works well in people who have failed Anti-TNFs and Vedolizumab works better in UC than Crohn's. Just curious because Stelara's probably next for my daughter.


Sorry...stalled, as in GI docs are really excited about Vido (Vedolizumab) and looking ahead to Vido instead of Stelara.  Both are same family of drug, anti-adhesion, the same way Remicade and Humira are different but in the same family of anti-TNF drugs.  The appeal is the lower major risk factors as compared to current Crohn's drugs...and we all know those can cause sleepless nights.

Gus has Crohn's, just turned 14, and has been on Stelara for about 16 months.  Nothing else worked to control his disease.  He had the best school year ever this year.  He says he feels like a regular kid!  So, I am a HUGE fan and would say "go for it."

Not many docs have experience with Stelara for Crohn's, especially peds Crohn's.  Our doc is happy to discuss with any doc looking for experience with actual patient.  

Sorry if I scared you.  Personally, I'd like to see the medical community pursue both drugs as options for us since Crohn's is not a "one size fits all" disease.

Best wishes for you and your daughter.
Cheryl VT


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## mugsymagoos

Morning!

Another fan of Stelara here!  My daughter has been on it over a year now, and after her last scope, her colon has looked better than it ever has!  The Stelara is definitely working!


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## Livilou

Ahhhh....so happy to hear these updates! Liv is still going strong on the Stelara as well! It is nice to know there are other options available, but for now we will continue with Stelara!!


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## AZMOM

We do our second Stelara dose Friday and these words are encouraging!!!!

I did not want to hold out for Vedolizumab.  I'm sure it is great and helping A LOT of people safely or it wouldn't have gained approval.  I'm just not ecstatic about it having the same mechanism - simplistically speaking - as Tysabri.  No PML to date with the Vedolizumab but I'm paranoid!  Aren't we all?!?!?!?!? :ybatty:

J.


----------



## Brian'sMom

Cheryl, I have been mentioning Stelara to our GI at Mayo for a long time. He just never seems to engage in a conversation about it. We go back for a 6 month followup colonoscopy/MRI the end of Sept in Rochester with him. I intend to just ask him about it. Our KC GI at our last appt mentioned the Vedo... She was really excited but also mentioned the bad side effect it had. I asked her directly about Stelara and she said there wasn't as much excitment around it. I wonder why. KC is limited... so I just am holding my questions for Mayo. If Brian's rectum doesn't look better after 6 months of diversion... then we'll be going off of Cimzia/MTX so that will be time for discussion.


----------



## Maya142

Funny how all these doctors have their favorites. We have heard so many good things about Stelara and not much about Vedolizumab, but maybe that's because M also has arthritis and Vedolizumab is supposed to be gut specific.
We were told Stelara will be approved in 2015 but not sure if that is true.


----------



## vtfamily

AZMOM said:


> We do our second Stelara dose Friday and these words are encouraging!!!!
> 
> I did not want to hold out for Vedolizumab.  I'm sure it is great and helping A LOT of people safely or it wouldn't have gained approval.  I'm just not ecstatic about it having the same mechanism - simplistically speaking - as Tysabri.  No PML to date with the Vedolizumab but I'm paranoid!  Aren't we all?!?!?!?!? :ybatty:
> 
> J.


We didn't have the option of waiting for Vedo either.  Stelara has been a real blessing...even if Gus had to be the first kid in L.A. to use it.


----------



## vtfamily

Brian'sMom said:


> Cheryl, I have been mentioning Stelara to our GI at Mayo for a long time. He just never seems to engage in a conversation about it. We go back for a 6 month followup colonoscopy/MRI the end of Sept in Rochester with him. I intend to just ask him about it. Our KC GI at our last appt mentioned the Vedo... She was really excited but also mentioned the bad side effect it had. I asked her directly about Stelara and she said there wasn't as much excitment around it. I wonder why. KC is limited... so I just am holding my questions for Mayo. If Brian's rectum doesn't look better after 6 months of diversion... then we'll be going off of Cimzia/MTX so that will be time for discussion.


Kathy,

It's good to hear from you.  Hope Brian is doing well.  Was thinking about you the other day.  Hope the follow-up goes well for you!

I think the lack of excitement around Stelara is because so few Crohn's patients are using it  and it still carries TB risk.   Whereas Vedo uses the same mechanism and has lower TB and lymphoma risks than other meds...as well as blocking the PML/JK virus risk of Tysabri.  I understand the excitement, but I hope the GI community will continue to consider/use Stelara.  Remicade wasn't tossed aside when Humira came on the scene!   Many people benefited from both and I am sure that will be the case with Stelara and Vedo.

Keep us posted about Brian.

Cheryl VT


----------



## vtfamily

Maya142 said:


> Funny how all these doctors have their favorites. We have heard so many good things about Stelara and not much about Vedolizumab, but maybe that's because M also has arthritis and Vedolizumab is supposed to be gut specific.
> We were told Stelara will be approved in 2015 but not sure if that is true.


So true about the favorites!

We were fortunate to not have to wait for the Stelara approval to begin using it.   I shudder to think what we would have done without it for the past year.


----------



## AZMOM

Cheryl - I hear ya. Claire is the first at Vanderbilt children's. 

I am not 100% confident that the entyvio (vedo) eliminates the PML risk based on what I've read. 

Read the two paragraphs before the FDA medwatch #. 

http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm398065.htm

Now ALL THAT ASIDE - if I were to the place that my child was not doing well and this was my best option. I would not be deterred by a maybe. 

Like Maya, we've got a lot of arthritis issues, so maybe that's why we went Stelara first. 

Hugs,

J.


----------



## vtfamily

Thanks for the link.  I'll check it out.


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## AZMOM

Claire had Stelara #2 tonight.  Praying!!!!

Maya142 - Claire says to tell your sweet girl IT BURNS.  She was furious but she was tired.  Usually an ice pack makes her happy but it didn't.  All that said, it hurt less than 10 seconds.  But I did want to tell you that Claire says it burns.

J.


----------



## vtfamily

AZMOM said:


> Claire had Stelara #2 tonight.  Praying!!!!
> 
> Maya142 - Claire says to tell your sweet girl IT BURNS.  She was furious but she was tired.  Usually an ice pack makes her happy but it didn't.  All that said, it hurt less than 10 seconds.  But I did want to tell you that Claire says it burns.
> 
> J.


Hugs to Claire.  Painful meds are no fun for sure.

Gus said the Humira was the worst, most painful, of all the meds and the burn would linger for 30 to 40 minutes.  He felt Stelara was better than Humira in that regard.   He also said the Stelara injections don't hurt or bother him anymore.  So, the good news is that she may find it isn't so painful down the road.

Cheryl VT


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## Brian'sMom

Some have said that Humira isn't that bad... but Brian said it was liquid Fire!! It didn't last long either. But that 's what I worry about Stelara. These kids are so tough... why do the meds have to burn??!!  Cimzia is 2 syringes with 200 mg each... its thick--so they go in slow. He says he'd take those over Humira any day... so I guess that gives me insight on how it felt. 

J-Claire hasn't ever had Humira because of the TNF part right? I'd like to hear another comparison of the two from a kids point of view.


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## Maya142

Thanks J! I was so hoping it wouldn't burn! M hated Humira but it really helped her so she got used to it. She also used to complain that is really burned.

I don't know if this is true but one doctor said they might be coming out with an IV version of Stelara. I know some of trials for Crohn's were done with IV Stelara. Don't tell your kids yet though, because I'm not sure and don't want to get their hopes up!


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## SarahD

The UK trial of Stelera is infusion based for the first part. The later parts are injection based. So yes it is possible to get Stelera as an infusion.


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## AZMOM

Maya - it must since Claire rarely says MTX burns and we are 2 for 2 on it burning (Stelara). 

We were never offered an IV infusion option?????

J.


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## my little penguin

The thing to remember is if its available by injection most inssurance will probably not pay for the increase $$$ due to infusion ..
Will lidocaine help the burn with stelera ??
I know it helps some for humira ( but still burns per DS ).


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## Maya142

It's not out just yet J, some of the phase III trials for Crohn's were done as infusions. For psoriasis and psoriatic arthritis (which are approved) only the shot is available.


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## AZMOM

MLP - I haven't worried much about the lidocaine.  We have to get through one more loading dose (the big one) and then it will only be every 8 weeks.  I'm figuring with everything else she's tolerated - a 10 sec (at the most) burn every 2 months will seem like child's play.  Seems sad, right????

J.


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## SupportiveMom

Found out today we are going through the process of getting approved for ustekinumab. Trying to get her started on it very quickly, like in next week. Any tips?


----------



## vtfamily

SupportiveMom said:


> Found out today we are going through the process of getting approved for ustekinumab. Trying to get her started on it very quickly, like in next week. Any tips?


Hope you don't hit any road blocks with insurance.

Gus has been on it for a year and a half and is still doing really well.

Best wishes,
Cheryl VT


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## SupportiveMom

The hospital does the process for me. The company that handles it is the same one that handled getting us approved for Remicade called BioAdvance. The manage all that directly. Now the concern will be the 20% not covered by insurance.

 Gus has had resections, no? D is really scared of having the surgery as we were told from the GI it will most likely be permanent (no j-pouch)


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## vtfamily

Gus has done very well with the Stelara.  No reactions.  He said it burns for a few seconds, but nothing like the intensity or duration that Humira stung.

20% wow!  The cost for the 45mg dose here is $5,000.  I don't know how we would ever be able to cover $1,000 for every injection.

I really hope it works for D.  I'm all for avoiding surgery whenever possible!!


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## SupportiveMom

OMG I so hope it is cheaper here! I can not afford $1,000 a shot. Humira had a plan that just accepted the 80% and waved the 20% fee. BioAdvance wasn't so good on that for Remicade and only granted it for a year. D was only on Remicade for 7 months before she went off so I never found out what happened after a year. The doc was talking about aggressively dosing her but I got confused with all the info. How often are the dosages for Gus?


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## my little penguin

https://webrebate.trialcard.com/Coupon/StelaraPortal/

Sterlera assistance card covers some of the copay 
Not sure if there is a similar program in Canada but might be worth a call.

We use one for humira and it covers all but $5 .
Good luck


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## vtfamily

Gus takes the Stelara (45mg dose) every two months.

It seems so strange (in a good way) only having to see the doctor every two months, with no other concerns, pain events or hospitalizations in between.


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## SupportiveMom

Just got off the phone with the hospital. Based upon her allergies to medications and her anyphalaxis reaction to Remicade they don't want her on Stelara. They just got the report from her 1st GI on the reaction because I mentioned it and the new GI didn't know it was that severe. Another med crossed off the list. 

Trying Simponi instead. Not approved for kids yet is all I know. Time to switch into new research.


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## Maya142

SupportiveMom - My older daughter has been on Simponi (for AS not IBD). She was on the injection and did quite well on it (for a while). She got the 50mg dose every 3 weeks (it's usually given every 4 weeks for arthritis, the dose is higher for Ulcerative Colitis -100mg I think). The good news is that the injection is NOT at all like Humira- S said it did not burn at all!

There is also an infusion (called Simponi Aria) available but that is so far only approved for Rheumatoid Arthritis. 

We have looked at Simponi for M, for both the AS and Crohn's. Some GI's are using it off-label for Crohn's. In M's case, we would do the infusion, Simponi Aria, because her doctor prefers the flexibility of it and has been able to get insurance to approve it for older teenagers (since it's not approved for kids yet). If high dose Remicade does not work, we're thinking either Simponi or Stelara.


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## Maya142

Simponi is almost approved for Juvenile Idiopathic Arthritis and has been through many trials on kids (in Phase III right now), so don't worry about it not being approved for kids. Pediatric rheumatologists also have been using off-label for a while - it has been suggested for M for two years now!


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## SupportiveMom

The BioAdvance coordinator felt very confident it would be approved. She & 1 other colleague deals with all of SickKids approvals in the IBD dept. I found it annoying to do the infusions and much prefer administering at home if that continues to be an option. Her dosage is 2 pens at loading dose, 1 pen every 2 weeks. I hope you are right on the no burn. D cried every time I did it. They also cover the remaining 20% our insurance doesn't cover!


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## Maya142

S iced the first time, and by the second time did not bother icing at all. She used both the syringe and the pen (insurance messed up and sent the syringe for the first two months). 

She said the syringe hurt less, but the pen really was not like Humira and didn't bother her at all (the needle hurts of course, but medication itself doesn't burn).

We were told the same doses for M (100mg) - if we do it, I'd also prefer injections over infusions (so much more convenient!) but her doctor will decide.


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## vtfamily

Another school year has begun.

Gus' summer labs looked good.  No signs of inflammation or new strictures.  It looks like the Stelara continues to do well with managing both the pain and the disease.

It looks like he will be able to enjoy his first year of high school "like a regular kid."

What a busy year it will be too!  He is carrying a full load of academic classes, with band an hour before school begins and cheer/yell leader (which counts for PE) until 5pm three days per week.  Long days, but on the plus side, I hope he will be able to put himself ahead of the curve...just in case he has to slow down due to a flare in the future.

He has such a positive expectation for the year, it is making me positively giddy!


----------



## Sascot

What a great update.


----------



## AZMOM

Yay Gus' Mom! I love giddy!

We are cautiously optimistic that things have taken a turn here too. Best fecal cal ever at 189. Still on 50% EN and still weaning Uceris but so far......so good. 

Claire gets dose 4 in a couple of weeks. 

J.


----------



## Brian'sMom

Yay for Gus and Claire!! I keep wondering why our GI went with Vedolizumab despite my begging for Stelara (From seeing success stories on here). He is just convinced that Vedo is the next big thing and that it was made for Crohn's and UC. His reason he said for us not to start with Stelara is that it was made for psoriasis and the dosing for crohn's has to be tweaked until the correct dose is figured out. Do you think he made the right decision? The Vedo takes about 10-12 weeks to see a response. And as you all know, Because his rectum is so badly damaged... the GI said its possible that no medicine can fix that area now. Lots to consider when its the complicated rectum. But I can't help but think... when I read these posts... Are we on the right thing??!! Oh the worries of this disease. One thing too... The GI also started a new thing this week.... He's having a team of specialists to look over Brian's whole case from the genetic and immunology side of things. The whole immune deficiency side of things. I asked him, "Like maybe he doesn't have crohn's?" He said, "That's what I want to make sure of. Since Brian hasn't ever responded to any of the drugs for crohn's. And either did his aunt that had UC. Remember, she recently died due to potassium levels and other things. She never was in remission her whole life either. Sorry to hijack this thread... It just kinda pertains to me and my research and my worry. And all my smart mom's are on here!!


----------



## vtfamily

Brian'sMom said:


> I keep wondering why our GI went with Vedolizumab despite my begging for Stelara (From seeing success stories on here).


Awww Kathy, I just want to give you a big hug! :hug:  I know that you and Brian are having a really tough time.  I wish there was something more I could do to help.

You are right, from what I can tell, the Pediatric GIs are very excited about Vedo because it was designed for Crohn's, not something else.  Since it has the same working mechanism as Stelara (anti-adhesion), I am hopeful that Brian will have success with it.

I think the genetic history is a great idea.  More and more work is being done with genetics for unlocking the mysteries of IBD.  I actually approached our doctor with similar questions when we first learned that the Humira had stopped working.  I made a family tree chart of inflammatory and autoimmune diseases.  Our doc wasn't sure what to do with it at the time, but my rationale was that the information in the tree could suggest a treatment path based on Gus' gene pool.

My paternal grandmother had MS (which is what Tysabri was designed for originally), so I wondered if Tysabri could be effective for Gus.  I have psoriasis.  It would be interesting if we could make an objective correlation between Gus' success and family history.  How much easier would it be to find an effective treatment path if there was a correlation with the family inflammatory/autoimmune history.

Keep us posted Kathy.  Lots of hugs and prays going out your way!!
Cheryl VT


----------



## Maya142

Stelara is actually an IL 12 and IL 23 inhibitor, which is different from anti-adhesion. They're actually completely different - Vedolizumab is gut specific and Stelara is not (which is why it works for psoriasis and psoriatic arthritis).



> Vedolizumab binds exclusively to the α4β7 integrin, a primary mediator of gastrointestinal inflammation. It lessens inflammation in the gastrointestinal tract by selectively inhibiting the entry of inflammation-stimulating lymphocytes into the gastrointestinal tract without blocking systemic adaptive immunity.





> Ustekinumab is a human immunoglobulin G1 (IgG1) antibody directed against the p40 subunit of IL-12 and IL-23 cytokines


The gene IL23R is actually associated with IBD, psoriasis and Ankylosing Spondylitis, which is why so many doctors are very hopeful about Stelara (even though it is currently approved for only psoriasis and psoriatic arthritis).


----------



## Brian'sMom

Cheryl,
I'll take that big hug!! 

Maya, I'm not sure if I heard our GI right, But he said one reason its not approved yet for crohn's is dosing. I could be so wrong.

The research for both sound good. Like they both should work. I like that Stelara is systemic. But GI's seem to like that Vedo is Specific. I guess we have to go with what our doctors say to do. I really pushed for Stelara... so I know he knew my opinion!! Oh well, we see what happens from here. I hope and pray they both work... Then each of us have another option down the road.


----------



## Maya142

I don't know much about Entyvio Brian'sMom, but I hope it will work for your son! I've heard it works very well for Ulcerative Colitis - perhaps since Brian has issues in his rectum, it will work well for him too? He has been through so much, he really deserves a long long break from all of this.

I think Phase III trials are when they figure out dosing, but I could be wrong. Since it isn't approved yet, it does seem like doctors sort of "make up" the dosing for each individual patient with IBD! We were told 2015 for Stelara's approval... which is not so far away, so maybe we'll know more soon.


----------



## mugsymagoos

My daughter was put on Stelara before Vedolizumab came out after failing all other Biologics.  Stelara has been GREAT for her!  She was able to have her ileostomy reversed, and the pics of her colon looked the best it had looked in two years since before starting Stelara.  The thing we are dealing with now is a colon stricture!  She has to be very careful with what she eats, but I am trying to look up holistic type things that might be able to help with that too!  It's never ending!


----------



## vtfamily

Thanks Maya 142.  I'll have to clarify the details with our doc next time we see him.

Whatever the mechanism, it is doing a great job for Gus.  Though it would be great to be able to connect the dots between WHY some meds work, where others do not on a one to one basis.


----------



## AZMOM

Brian'sMom said:


> Yay for Gus and Claire!! I keep wondering why our GI went with Vedolizumab despite my begging for Stelara (From seeing success stories on here). He is just convinced that Vedo is the next big thing and that it was made for Crohn's and UC. His reason he said for us not to start with Stelara is that it was made for psoriasis and the dosing for crohn's has to be tweaked until the correct dose is figured out. Do you think he made the right decision? The Vedo takes about 10-12 weeks to see a response. And as you all know, Because his rectum is so badly damaged... the GI said its possible that no medicine can fix that area now. Lots to consider when its the complicated rectum. But I can't help but think... when I read these posts... Are we on the right thing??!! Oh the worries of this disease. One thing too... The GI also started a new thing this week.... He's having a team of specialists to look over Brian's whole case from the genetic and immunology side of things. The whole immune deficiency side of things. I asked him, "Like maybe he doesn't have crohn's?" He said, "That's what I want to make sure of. Since Brian hasn't ever responded to any of the drugs for crohn's. And either did his aunt that had UC. Remember, she recently died due to potassium levels and other things. She never was in remission her whole life either. Sorry to hijack this thread... It just kinda pertains to me and my research and my worry. And all my smart mom's are on here!!


You are not a hijacker!  We love you, mama.  Vedo was our plan B.  We went Stelara because the mechanism was the other end of the spectrum from the TNF blockers.  Many insurance companies won't cover it because using it for Crohn's right now is technically "off label".  Because of Claire's arthritis problems, I suspect, our insurance didn't fight with us.  

Claire is her GIs first patient on it but some of the adult GI docs at Vandy had patients doing well on Stelara.  Her doc talked with the folks at Stelara about the dosing, his colleagues at Vandy and some pediatric colleagues at Cinncy.  I was nervous nelly about the dosing process but I have calmed down.  (well, my version of calm :ybatty.  He said the same thing about 12 week loading cycle like Vedo.  

Big hug and plenty of prayers for your sweet boy.

J.


----------



## vtfamily

I'm happy to report that Gus' freshman year of high school is going well, even with his crazy schedule (6:45am band to 5pm cheer, later on game days).  He has the energy to keep going all day and to keep up with his homework too.  He is stronger and more engaged than he has been in years.

His labs continue to look good, not that labs ever tell the true story for him.  He remains pain free, a better indicator of his Crohn's being controlled.  Puberty has finally begun and he is growing, gaining weight and even has hair in some new places.  

I wish I understood why the Stelara is working so well for him when nothing else did.  Is there something that connects between his genetics and the drug or is it in the working mechanism of the drug?  I think knowing more about that might be helpful to others who have also struggled with  finding something that works for them.

I know Vido is the new "it" drug for Crohn's.  I really do hope that it brings relief to those who need it so desperately.  But, just in case another option is needed...I'd definitely keep an open mind to Stelara.

Looking forward to a very happy new year indeed!


----------



## DustyKat

vtfamily said:


> I wish I understood why the Stelara is working so well for him when nothing else did.  Is there something that connects between his genetics and the drug or is it in the working mechanism of the drug?  I think knowing more about that might be helpful to others who have also struggled with finding something that works for them.


This is brilliant! and surely has…:mademyday:…I am so very happy for you both.  

I often ponder this question myself and I am leading toward thinking in these cases there is a complementary effect between the genetics and the drug. Hopefully in years to come there will be more personalised medicine. 

Onwards and Upwards Gus and may the good times last a lifetime! :ghug: 

Dusty. xxx


----------



## mugsymagoos

Same here with Kayla and Stelara!  She continues to do so well on it after failing all other meds!  So happy we were given the opportunity for her to be on it off label, and that our insurance company covers the cost too!  Here's hoping both Kayla and Gus continue to stay in remission on Stelara!  Happy New Year!!


----------



## Maya142

We see a researcher who focuses on AS who recently told us that for AS IL-23 is the target to block. There's a new IL-23 dug (not Stelara) that will come out in 2016 (or around 2016) that he is very excited about - he says it will work much better than Stelara!

Since AS and Crohn's are related, perhaps that's why for some patients with Crohn's IL-23 inhibitors work like magic?


----------



## Livilou

Hello! Both of my kids are now on Stelara. Olivia is going on 2 years this April and is doing great,,,except for a few bumps in the road recently. She was very stressed during college finals and was not eating very healthy with her crazy study hours ect,,,, her recent labs have slipped a little with a slight inrcrease in CRP and low albumin. Her thyroid labs (which is a good indicater of a flare) were way off again...surely not absorbing her hormone replacement and had to increase her dose. She has complained of occassional cramping and bloating and has had 2 recent episodes of blood with BM, and now has a mouth ulcer. Hmmmm...most definitely a mild flare. Liv usually has disease activity this time of the year...cyclic for both kids. She has also just recently started on birth control pills to help with painful, heavy menses that cause her severe nausea, vomiting and headaches every month. The pills have helped with her dysmennorhea, but I cant help but think the hormones may be messing with her CD and possibly causing this mini flare???? She has been having no issues with the Stelara...GI wants to scope her after her next semester is over just to have a look inside. She has not had a scope since starting the Stelara. Praying things look good and she could continue with this drug.

 My son started Stelara 3 months ago after using Cimzia for 18 months with absolutely no effect on his CD. Prior to that he had been on Remicade for almost 2 years with good control until he developed antibodies and became symptomatic again. He sees an Adult GI who is the chief MD of the practice and was uncomfortable prescribing the drug. Both of my kids are the first patients on Stelara for both of their MD's. She initially wanted Trevor to start Humira, but we begged her to prescribe the Stelara because Liv was doing so well with it. After some research on dosing, ect... she agreed to let him try it. I was thrilled when our insurance company agreed to cover the drug for both kids and so far so good. Symptoms have been slowly decreasing (Stelara took 7 months to work for Liv) and he has had zero side effects with it. His labs have been normal, except for some ongoing anemia that developed when he was on Cimzia and he continued to bleed on and off for the entire time...the only thing that stopped the constant bleeding were steroids. Since starting Stelara, he has been able to wean from steroids...bleeding has stopped. I am keeping everthing crossed for both of my children that Stelara contines to work... So happy to hear such great updates from everyone!!! Happy New Year!!                                Kim


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## Brian'sMom

Since there aren't any kids on Vedo on here.... I'm stuck looking at the adult thread. You all know how kids handle this disease compared to adults. It's all complain, complain, complain on that adult thread. I begged for Stelara for a year... our GI wanted Vedolizumab since issues were in large bowel. As with Stelara, Vedo is slow to work... but it's hard not to have any support on here.


----------



## vtfamily

Way to go Livilou!


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## vtfamily

Stelara is still doing the trick for Gus!

Puberty is (finally) in full swing.  He has grown 4" in 15 months, amazing for him.  He has a 24/7 appetite, pimples, and a voice that cracks.  Gives me warm mommy fuzzies.

He managed to make it through his entire freshman year, rough schedule, higher expectations, stress and all...without a flare!  Can I just say A-M-A-Z-I-N-G!!!

He will be on the cheer squad again next year, as the lone yell leader.  Cheer has been awesome for him.  It is something physical that he CAN do and it provides an wonderful opportunity for social inclusion.  They just finished pink week...not easy for the male member of the group.  He won the spirit award for wearing his "Tough Guys Wear Pink" shirt and dying his hair pink.  Love it when he beats the girls on their turf!  They leave for cheer camp on Monday.  Can't wait to see the new moves. :dusty:

Gus is still the only local kid on Stelara for Crohn's.  The Peds GI docs have all turned their attention to Vedo instead.  I really hope those kids find the same success as Gus has had.

In fact, life has become so "normal," I'm starting to look into forming a local support group.  The closest one to us is over an hour away.  We'll just have to wait and see how that goes.

Happy summer to one and all.
Cheryl VT


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## kimmidwife

That is so amazing to hear!!!
Yay for good news! I hope he has an awesome time at cheer camp!


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## Maya142

What wonderful news!! Love hearing about kids doing well on new meds!

PS - Love the picture! Gus is so grown up!


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## vtfamily

Another year, time for another update.

Gus was a "little guy" so for long, it has sort of taken me by surprise that he is really maturing physically and much closer to "full grown adult" size than little kid size.  He is now 4" taller than me...and to think I was worried he wouldn't ever cross the 5 foot mark.  A junior in high school now, he was telling me that he was thinking about trying out for football next year.  I think that is more an indication of how good and how strong he feels...not that he really wants to line up on the grid-iron.  I think what he really wants, in his heart of hearts, is to prove to his long time friends that he is able to keep up with them now.  All of those friends from Kindergarten who grew taller, and stronger, and faster, and who left him behind when he couldn't keep up anymore in 4th grade.  The real friends have remained by his side and I remind him to not worry about the rest.

Stelara update.  Stelara is still doing the trick.  He has been on 45mg for 4 years now.  Though it seems like it is not holding out for the whole 8 weeks any longer.  Stelara was approved for Crohn's in October at 90mg for adults.  So, we are finally going to be using Stelara "inside the lines" for the first time.  He is moving to 90 mg every 8 weeks and had his first 90 mg dose last week.  Fingers, toes, and shoe laces crossed we can continue for a long time to come.

When we visited his GI doc, even the doc was surprised at how quickly Gus' body is maturing now that his body can function normally.  We even had a nice chat about things to consider for Crohn's patients when thinking about college.  Another note, Gus is just on Stelara, nothing else.  The GI doc was sort of scratching his head about that becuase he would normally prescribe something to help reduce the development of antibodies too...but no, nothing else.  Gus is doing very well with just the Stelara. 

Wondering how all of your children are doing?  Would love to see some updates:
Brian'sMom, kimmidwife, CarolinAlaska, Gmama, DustyKat, caroline, crohnsinct, livilou, Farmwife, and all...


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## kimmidwife

Great to hear how well he is doing! Caitlyn failed Entyvio and is possibly going to try Stelara next. We will find out tomorrow. We are going to see if she qualifies for a research study. If she does not we will go ahead with Stelara.


----------



## vtfamily

kimmidwife said:


> Great to hear how well he is doing! Caitlyn failed Entyvio and is possibly going to try Stelara next. We will find out tomorrow. We are going to see if she qualifies for a research study. If she does not we will go ahead with Stelara.


Kim,

I will be saying prayers for Caitlyn's success.  :dusty:  I am thankful everyday that Stelara has worked so well, and for so long for Gus.

Cheryl


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## Maya142

Thanks for the wonderful update. Glad it has lasted so long for Gus! Is there any particular reason he wasn't put on 6MP or MTX to prevent antibodies? Just curious.


----------



## vtfamily

Maya142 said:


> Thanks for the wonderful update. Glad it has lasted so long for Gus! Is there any particular reason he wasn't put on 6MP or MTX to prevent antibodies? Just curious.


He was on 6MP and MTX with Remicade and Humira, but neither did the trick in preventing the antibodies.  Honestly, when we started Stelara it was so far outside the box, I think his doctor was really just taking a stab in the dark and focused on the Stelara rather than the usual protocol for biologics.

Gus' GI doc has always said he is happy to share our experience with any other docs who are interested in floating the idea themselves.  Let me know if you'd like the contact information for your doctor.

Cheryl VT


----------



## CarolinAlaska

Hi Cheryl, I'm so happy to hear how wonderfully Gus is doing.  Jaedyn is 4 years post diagnosis this month, but has never done great.  Still stuck on the first immunologic they prescribed during her first year.  We're having a rough time, but will have scopes and a pill cam this week and we hope they change tracks finally after that.


----------



## vtfamily

CarolinAlaska said:


> Hi Cheryl, I'm so happy to hear how wonderfully Gus is doing.  Jaedyn is 4 years post diagnosis this month, but has never done great.  Still stuck on the first immunologic they prescribed during her first year.  We're having a rough time, but will have scopes and a pill cam this week and we hope they change tracks finally after that.


I hope all goes well with the pill cam.  Gus' scopes never revealed where or how bad his strictures were.  The pill cam was a huge blessing for us...not because it revealed anything more than the scopes, but because it got stuck and they had to go in and surgically remove it.  That was our first real break after about four years of little to no progress.  That was the moment when all of the doctors finally saw what I knew all along...something was very wrong...and it was.  They had to remove 35cm of his intestines at that time.  It will always be one of the "best days" in our Crohn's story.  Strange, but true.

Prayers for Jaedyn.
Cheryl VT


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## Jmrogers4

What a fantastic update, I was just wondering not too long ago how he was doing.  Glad the stelara is still working.  Jack is now taller than his friends thanks to remicade.  He also made the comment that he could have probably played football this year after having to quit his freshman year since he was just too small.
I bet you also get the utter shock and surprise from people who have not seen him in a while about how much he has grown and changed.


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## vtfamily

kimmidwife,
How did the pill cam go today?
Cheryl VT


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## kimmidwife

It was Carol's daughter who is having the pill cam and scopes this week. We went to meet about Caitlyn doing a research study. It did not go great. I posted about it on my thread, the one titled it's been 7.5 years since diagnosis. If you want to take a look at it.


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## vtfamily

I completely forgot to mention...it has been a very long time since Gus needed any supplemental feedings through his G-tube.  So, for his 16th birthday, his doc approved removing it.  I deflated and removed it at home.  He was so elated!  Nothing but pure joy for the rest of the day.

He had the port for so long that it took quite a while to heal, in fact he had to have it sutured closed after about six months.

We had fun with it though.  The stoma would "act up" when he was hungry.  So we joked that his other mouth wanted to be fed too.  Crohn's families have to find the humor where they can! Right?!

Take care all.
Cheryl VT


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## Maya142

How many years did he have it? Just curious because my daughter has a G tube that she does not use anymore (she had to get a J tube placed because of her Gastroparesis, which she uses instead). 

We have talked about letting it close, but her GI said it would probably have to be sutured since she's had it for more than a year and we haven't gotten around to it.

Did Gus's close easily after being sutured? Did it leak? Any issues?

M's stoma also makes noises when she is hungry .

Glad he is done with it!


----------



## vtfamily

kimmidwife said:


> It was Carol's daughter who is having the pill cam and scopes this week. We went to meet about Caitlyn doing a research study. It did not go great. I posted about it on my thread, the one titled it's been 7.5 years since diagnosis. If you want to take a look at it.


Sorry Kim for the mix up.  I will go to your thread to follow-up on the study.  Sorry to hear it didn't go well.

Cheryl VT


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## vtfamily

Maya142 said:


> How many years did he have it? Just curious because my daughter has a G tube that she does not use anymore (she had to get a J tube placed because of her Gastroparesis, which she uses instead).
> 
> We have talked about letting it close, but her GI said it would probably have to be sutured since she's had it for more than a year and we haven't gotten around to it.
> 
> Did Gus's close easily after being sutured? Did it leak? Any issues?
> 
> M's stoma also makes noises when she is hungry .
> 
> Glad he is done with it!


He had been through several versions of G-tubes and G-J tubes along the way.  The tube has been in for about 7 years.  He hasn't had to use it at all since he started Stelara 4 years ago.

Pulling it out was easy.  I cleaned the area really well and put gauze and a bandage over it.  Cleaned and bandaged every day the first week.  I did everything they would have done at the GI's office...and I saved myself the hour drive there and the hour drive home.

There was some leakage the first 24 hours, but not as much as you would expect.  Gus did get a little rash because his skin was sensitive to the adhesive from the bandages.  No fever or anything, it just looked icky, so I took him into the local clinic to be on the safe side.

The suture part was a little more complicated than I thought it would be.  They had to go in pretty deep to completely suture from the inside out.  Gus was sore the next day, so it was good we did it late in the week.  He missed one extra day of school and recovered over the weekend.  Otherwise the suturing was not a big deal.

I was rolling on the floor with laughter at the face the nurse practitioner made when I told her I removed it myself, at home.  All of the color drained from her face and she just stood there in disbelief.  I assured her that I did it with the doctor's permission.  Still, she hurried out of the room to touch base the doctor.  In the end, it was highly entertaining and nothing to be worried about.  

Now that it is all healed, the scar almost looks like a second belly button.

I hope that helps.
Cheryl VT


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## vtfamily

CarolinAlaska,
How did the pill cam go today?
Cheryl VT


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## Farmwife

What a great update, 
Grace is going on almost 4 years with her gtube.
It's been a blessing to have it but it will be a blessing to remove it for good.  Lol
The surgeon told us that after 2 years, it will have to be stitched.

Lol,  about the nurse. Don't they know we ibd mom's have had to handle a lot worse.


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## CarolinAlaska

vtfamily said:


> CarolinAlaska,
> How did the pill cam go today?
> Cheryl VT


That was on Thursday.  It was disappointing, because we don't think it got through her ileum before we ran out of time.


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## dhelle

Hi - 

I am a 41 year old woman with Crohn's...but I am actually writing to ask you guys for help with my 7 yr old niece - diagnosed with Crohn's in her small intestines 6 mos ago. My brother is agreeing to Entocort for 10 days - if that doesn't work, then prednisone - because the first fight is to reduce inflammation. Poor Gabby is only 8 but is scared to eat anything lest she feel sick again. They're working with a nutritionist but first thing is to reduce the intestinal swelling.

Without going thru my own history of trying many, many drugs - do any of you have experience with a young child on biologics? With a family history of Crohn's (me, my dad, and now Gabby) I was wondering if any of you have an experience with Stelara. All these meds have side effects - but I think Telara may be good for Gabby (I'm on it now and it's the first biologic hat neither my father nor have suffered severe negative effects.

Any experience/suggestions/advice about trying Gabby on Stelara?


----------



## Maya142

Hi and welcome!
It could be an option for your niece. However, it isn't approved in kids, so it's pretty unlikely that it would be given as a first-line drug. It's MUCH more likely she will get a biologic that is approved for kids - like Remicade or Humira. If those fail or she has significant side effects, then they would try to get insurance approval for Stelara. It is really hard to get insurance approval sometimes - there are some parents here with kids on Stelara but they have all already tried at least one anti-TNF (usually Remicade) if not both, and even then had trouble getting it approved.

I'll tag my little penguin because her son recently started it. I will also tag some other parents:
pdx
crohnsinct
Mehita
Tesscorm
Pilgrim
kimmidwife

So about side effects - I have two daughters who have been on Remicade and Humira. Neither had significant issues with side effects. Actually, they have had no side effects on biologics except for some tiredness the day after Remicade.

I wouldn't necessarily go on how you and your dad have done. Kids are different - they are more resilient in some ways and metabolize drugs differently. In fact, they are often given much higher doses that adults.

And it really does vary - I have two kids with the same kind of juvenile arthritis (and one has IBD) and they respond very differently to meds. We have several families who have two kids with Crohn's, and each kid is different. So she may not have issues, even if you and your dad did.

I can tell you that MOST parents on here who have had kids on biologics are going to tell you that they were all scared to put their kids on biologics. Terrified. Spent many nights worrying. And most have never looked back and only regret not putting our kids on them sooner.

In terms of reducing inflammation, have you heard of Exclusive Enteral Nutrition? It is 6 weeks of 80-100% of the diet being from formula, with the remaining percent being from food. It lets the gut rest, is easy to digest and best of all, can induce remission better than Pred can. And it's better for mucosal healing. It is used a lot more for kids than adults and seems to work better for kids.


----------



## dhelle

Hi Maya142 -

Thanks for your prompt and educated response. Truth is, at this point my brother says he is just focusing (along with Gabby's gastro) on reducing the inflammation. He was ready to try a short course of prednisone but her doc suggested first trying ten days on Entacort - a milder version of steroid. He and I are both hoping this works but truth is, I know pred will really just open things up more quickly and give her the much needed relief. I referred him to a nutritionist and they've started on some of her suggestions - but he's looking more to the brief course of steroids before really focusing on details of diet.

She's "mostly" gluten free but is rather malnourished and afraid to eat because she doesn't know what does/doesn't make her sick. I'm not certain if the doctor suggested the diet to which you referred - is that a liquid diet?

All I know is when I was her age I was constantly having digestive issues but nothing was diagnosed till my late teens. I understand not all biologics are recommended for children and frankly I cannot stand some of the side effects, but as you said, they do get a lower dose than adults.

For children, I know more about diet recommendations than meds, so if any of you are more in the know, I'd love to hear what you think!

Well wishes and well health to you all -

dani


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## my little penguin

Een is exclusive enteral nutrition 
Formula only (no solid food or other liquid food )
This is as effective as steriods in kids without the side effects 
My kiddo was dx at age 7
He is now 14 
Een is done for 6-8 weeks with formula only 
Polymeric (kids boost /pediasure for some kids )
Most need semi elemental (peptamen jr /peptide ) where the protein chains are broken down 
Other adult 
“diet”  doesn’t not work in kids 
So gluten /milk/meat etc free diets don’t work kids lose weight 

Entocort for 10 days really isn’t long enough 
Damage tajes 6-8 weeks to heal no matter the method including pred
Busoenide only works for part of the intestine 
And still has the same risks as pred 

While on steriods /Een maintenance therapy needs to be started 
So the kiddo doesn’t have to stay on steriods longer

5-asa take 30 daysin kids butare not recommended for Crohns 
Mtx is recommended in kids 
They no longer use 6-mp for kids due to high lymphoma risk 

Biologics are remicade then humira
Remicade since kids grow fast 
This allows the dose per weight to stay the same longer 
Most insurance will not cover biologics until they fail lower level drugs 
Then
Biologics are either remicade or humira for approval 

Stelara IS NOT approved for kids 
Generally if they let kids use it off label it’s thise over 12 
Medically 12 is the magic age 
Took many months to get Stelara approved for ds
But he had been on remicade (8 months)
Humira for over 5 years 

I will say he did Een three times
Stay on 30-50% formula plus food after that for the past 7.5 years
This allowed his gut some relief and let him gain:grow like his peers

We did research and tried all the free of diets /paleo /scd/crohns exclusive 
Not recommended for kids

Definitely get a second opinion 
At one of the top three for pediatric ibd 
Boston children’s 
Children’s of Philadelphia 
Cincinnati children’s 

They can do records review 

Kids disease is much more agressive than adults
It’s changes over the first 10 years of dx
Adults doesn’t change as much 

Ds drank peptamen jr for years then needed to switch to elemental formula amino acid based 
He currently drinks 50% of his cLories from 
Neocate jr chocolate orally 
No tube 
Good luck


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## crohnsinct

Well Gabby is a very lucky young lady to have an aunt who shares the same disease and who loves her enough do all this research.  Your brother is also super lucky to have such a loving sister!  

Entocort does not have such a great success rate with pediatric Crohn's.  One of my daughter's was put on it and our GI said it had maybe a 40% success rate. I also think 10 days is not a long enough time to judge effectiveness.   

Steroids and EEN are used to induce remission but you are absolutely right in that  you need a maintenance med to take over.  Most maintenance meds need a while to get to therapeutic levels.  Methotrexate can take up to 12 weeks.  So they are started at the same time as the steroids/EEN.  This way you have something to induce remission and an exit strategy.  Stelara is a very attractive drug but it is not approved for pediatric use as of yet.  However, Remicade is an anti tnf and has been used with pediatric patients for years with much success.  As MLP pointed out it is a more flexible drug with regard to dosing a young growing child.  

Good Luck and ask any questions.  There are many of us who have BTDT.


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## Maya142

My daughter has had success on Entocort, but like MLP said, it takes more like 6 weeks than 10 days for it to work. She should have some response in 10 days, but I hope they are planning to keep her on it for longer. I think from your post, I understood that if she hasn't improved at all in 10 days, then she would go to Pred. But if she does improve, she stays on Entocort, right?

Kids have MORE aggressive disease than adults, so often they need a HIGHER dose of the biologic. Remicade is used most often because it is dosed mg/kg and that works best for growing kids. With Humira, you only really have two doses (20 mg or 40 mg), and then one frequency change (biweekly to weekly, though some docs will do every 5 days).

It sounds counterintuitive, but you really do want to treat kids aggressively. If you get the disease under control with a biologic, she is less likely to deal with strictures, abscesses, fistulae and in kids, growth delay (which can be very distressing for kids).

That is why supplemental formula is suggested. EEN (exclusive enteral nutrition) is 100% formula. That is only for 6-8 weeks to induce remission. Then she would add food back and just get some of her calories from formula.

My daughter was severely underweight and malnourished. She never had to do EEN because Remicade controlled her Crohn's quickly. But she did supplemental EN for years. She first tried to drink Peptamen Jr. It does not taste great unfortunately. She was able to get down two shakes, which wasn't enough calories for her to maintain her weight, much less gain.

Then we went to tube feeding, which is when she FINALLY gained weight. She inserted an NG tube (tiny, infant sized and flexible like spaghetti) and a pump pumped formula into her stomach overnight. She got 30-60% of her calories that way. The other calories she ate. It was the first time she gained weight.

We had let her get very malnourished and very sick before we finally convinced her to use the tube. She was severely underweight and developed and arrhythmia and Refeeding syndrome. Her electrolytes were out of whack for months.

I'm sure you know, but her parents may not - being malnourished is serious. It is especially serious for kids and teens who are growing and developing. So formula is essential in some cases - many GIs tell kids it's like a medication. Not optional. Our GI said she choose if she drank the shakes or used a tube, but she NEEDED nutrition. We let my stubborn teenager make the decisions and she lost 25 lbs and only FINALLY agreed to the tube when she was told her organs could shut down if she lost more weight.

This is a LONG way of telling you nutrition is important. But makes sure it is someone who knows KIDS and not just adults, if you see an RD or nutritionist. An RD is better and especially someone her pediatric GI recommends. Because adult crohn's and pediatric Crohn's are not the same. Pediatric Crohn's is a whole different beast, unfortunately.

As for biologics, I once asked my daughter what she hated most about her Humira injections (which, as you may know, burn a lot). She said she hated that she didn't get to take them more often than weekly, because they made her feel better. She was 13.

Your niece will surprise you. I have been around these boards 5 years and we don't hear about significant side effects for biologics very often. We hear success stories much more often!


----------



## Maya142

I also want to add - NG tube feeds sound very scary and intimidating. We were scared. My daughter was miserable for the first day (her nose was sore, her throat was sore), but on day 2, she inserted it herself. By the end of the week she was a pro at inserting it - took 10 seconds, if that.

She inserted it every night and pulled it out every morning. No one at school had to know. With younger kids, usually the tube stays in and is changed once a month. But kids as young as 7-8 do insert them by themselves at our hospital. Our children's hospital is very big on supplemental enteral nutrition to make sure the kiddo is growing and gaining weight properly.


----------



## danifhelle

Where can my brother find Een? Is it just a liquid diet that she'll drink for weeks?

It may seem strange for me to be asking so many questions for my niece, but her parents are a bit too freaked out/overwhelmed to focus enough so I've been doing the research for them. 

As far as the effects of malnutrition on a child, I think MLP brought this up, I know it is very serious. I'm not sure her parents understand the impact this can have on her bones and neurologic development - emotional, psychological and cognitive.

I agree with all of you - Entocort does ittle, ASA even less. She's stopped the Cipro because it hasn't worked. Most frustratingly, they will not talk about this around her. Will not let me talk to my niece - like having a "fun" conversation over backyard basketball: "of these 3 foods, which do you ike most?" - because that's a good way to get a window into what she knowingly-but-unknowingly avoids.

Will keep you guys posted.

Thanks for your help.


----------



## Maya142

Why don't you have her parents read this thread? Just send them a link. 

So EEN can be done with several different kinds of formulas. Polymeric, which are whole proteins and hardest to digest. Those would be Pediasure and Kid's Boost. Those can be bought online, in grocery stores, in some pharmacies (Rite Aid for example).

Then there is semi-elemental - partially broken down, so easier for kids to tolerate. Unfortunately, they taste worse than polymeric formulas. Many kids do get used to the taste. Those are ordered online. Pediasure Peptide and Peptamen Jr are the most commonly used semi-elemental formulas. 

Some GIs insist on semi-elemental for Crohn's kids. We had previously tried Pediasure/Ensure and they made my daughter nauseous and she had diarrhea. So we understood the need for semi-elemental. Our GI gave us samples - different flavors. There is chocolate, vanilla and strawberry Peptamen Jr. That is what my daughter drank. She didn't like them at first but got used to them. She liked chocolate and strawberry. There is also an unflavored version you can add chocolate sauce too.

Unfortunately, she ended up being one of the few who could not even tolerate semi-elemental formulas. Her GI said it was rare in IBD kids, but sometimes did happen. So she went to elemental formulas - Neocate Splash, Neocate Jr and Elecare are the most common. She had an AWFUL time drinking them. They really taste awful - she made all of us try them.

She claims they taste like dirty feet and so ended up using the feeding tube. That worked well for her. Most "big kids" - teens, older school age kids - have trouble drinking elemental formulae. Some can do it. But mostly it's done by very little kids (babies). Most big kids/teens prefer tubes. Elemental formulae are also very expensive and are either delivered via a home health company if insurance pays or are bought online.

Some insurance companies will give you grief about covering formula, unless it's her sole source of nutrition (according to some policies) and/or it's going in through a tube. Others won't - ours paid for formula M drank and the one put through her tube.

Good luck!!


----------



## my little penguin

Ours has paid for formula for the past 7 years
No tube only supplemental not sole nutrition 
Covered under durable medical equipment clause as infusion therapy supplies


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## Max's Mom

My son got Crohn's when he was eight . He started Remicade shortly after that. Worked well for a number of years.No side effects at all. Inflammation is our common enemy here. The inflammation is what's causing pain,diarrhea etc. Question is, which medication or treatment will work best to fight it ,for you niece? Sometimes it takes a while to figure that out,but together,I'm sure you will find a solution.


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## crohnsinct

Boost and Ensure can be purchased in the supermarket or local drug store or even Walmart.  You can pick up a few cans and see how she likes it before making a huge commitment.  Boost and Ensure are also covered under insurance.

My daughters knew that it was an 8 week commitment but we always gave them an escape clause.  We approached it slowly so as not to overwhelm them.  We said, "see if you can drink a can".  Then it was see if you could do a day, the day turned into a week etc.  Once they started feeling better they did really well with it.  Oddly the last week was the hardest.  I think because the end is sooooo close and they are tired of it by that point. 

Just a required disclaimer: If they do decide to try EEN, please make sure they let their GI know and they work with them.  If she can not tolerate Boost or Ensure there are other formulas she could try and the GI can help them with that and the filing of insurance paperwork. 

Good Luck!


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## Tesscorm

Just to add to the EEN chorus...  I don't think there's much info I can add, just my son's experiences...

He was diagnosed at an older age than your niece, he was 16 but our hospital was also very pro EEN and that was the preferred treatment option, even over steroids.  He did six weeks of exclusive formula (no food except for clear 'liquids' - broth, jello, clear popsicles (no chocolate), etc.).  He used an NG tube overnight, as Maya's daugher (so inserted at night, removed in morning and, again like Maya's daughter, he quickly learned to do it and it took seconds).  He used an elemental formula - Tolerex.

After the six week exclusive period, he went to a regular diet but continued with the overnight formula at half dose for the next two years.

Only to show the difference in weight that the formula made...  prior to being sick, my son was approx. 140-145lbs.  After being sick for a few months, he dropped down to approx. 120-125lbs at diagnosis.  If my memory is correct, he gained 10 lbs over the exclusive period, and an additional 20 lbs over the next three months (while on the partial EN).  Over the next couple of years, he reached 175lbs (it was all 'heathly' weight, ie not the sort of quick weight you can gain with pred).  Of course, some of this was expected 'development' and growth but, my point is that the nutrition he received through the formula allowed his body to develop and grow in a healthy way. 

He continued with the overnight NG tube feeds until he left for university. By this point, he had started remicade.  Upon leaving for university, while not on the tube feeds anymore, he continued (at my insistence, not GI's) with 1-2 Boost shakes each day.  He's now finished university but still continues with the shakes most days (it's now become 'habit' for him to grab one for breakfast - better than a fast food breakfast sandwich!  )

While I can't 'prove' it, I've always believed the steady nutrition he received helped his body heal and stay as healthy as possible.

While it may be harder for an 8 year old to understand the necessity, if she can be convinced, it can only help her.  And the tube, likely a tougher sell , can be an even better option in that there is no argument that 'I'm not hungry', 'I don't like it'...  it's done overnight, no effort needed, no taste to deal with...  but, I can imagine, it would be a tougher sell to an 8 year old. :ghug:


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