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Using Stelara For Children With Crohn's

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.
 
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!
 

Tesscorm

Moderator
Staff member
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! :D
 

Jmrogers4

Moderator
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.
 
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
 
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!
 

CarolinAlaska

Holding It Together
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?
 
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
 
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. :)
 
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.
 

DustyKat

Super Moderator
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
 
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
 
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
 
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
 

DustyKat

Super Moderator
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
 
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
 

DustyKat

Super Moderator
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
 

CarolinAlaska

Holding It Together
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!
 
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
 
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
 

Crohn's Mom

Moderator
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:
 
@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
 

CarolinAlaska

Holding It Together
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?
 

AZMOM

Moderator
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.
 
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
 

Crohn's Mom

Moderator
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:
 
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
 
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!
 

DustyKat

Super Moderator
How wonderful for Gus, and for you to be able to enjoy it! :):):)

May it keep on keeping on!

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

DustyKat

Super Moderator
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
 
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
 
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
 
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
 
((((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!
 
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
 
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.))
 
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
 
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
 
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
 
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!
 
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
 
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.
 
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!
 
@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
 
@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

Super Moderator
@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. :eek: :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
 
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
 
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?
 
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?
 
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
 
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

Super Moderator
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
 
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:
 
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. :)
 
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!
 
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. :)
 
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.
 
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
 
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
 
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
 
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
 
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.”
 
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!!
 
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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