Stelara, CD, SpA update on C

C had a scope several months back. The results were less than stellar.

He had mild inflammation throughout colon and moderately severe inflammation at anastomosis site and above as far as scope would go.

We knew we had decisions to make but he also had a new rheumatologist appt and I wanted everyone on the same page.

Rheumy ordered bone scan and MRI. Both these came back negative for damage. He feels like the med is keeping C's inflammation away in SI joints and back. He is dealing with muscles issues that stem from past inflammation of joints. He called it something but I can't remember what.

C has been unable to gain weight in so long and with the bad scope results we discussed having a G tube placed and doing a round of EEN (actually 80/20) before moving to supplemental.

Also 4 weeks from now he will have a stelara levels test and determine where his levels stand and if moving the dose to every 4 weeks might help.

While placing the G tube the doc saw inflammation in the duodenum and took biopsies.

After the G tube procedure C had severe cramping so they did a flouroscopic test sending dye through his G tube. They saw what could've possibly been a small separation between the abdominal wall and something something blah blah possible small leak when tummy expands so he couldn't start tube feeds and had to eat very small amounts of low residue for a couple days then retest.

The flouroscopic retest showed all was good.

In the meantime his biopsy of the duodenum came back and the GI nurse called to state that the report said something about severely flattened and blunted villi to the point of atrophy or something along those lines. She said usually with celiac there is also a certain white blood cell but the report didn't mention that. So, the GI said we'd start with a celiac panel(which was done today) and go from there.

Until those results come back C still can't start the formula which at this point is elemental vital 1.5. He's still in some pain from the procedure and has said this procedure was worse than his ileocecectomy. We are taking it one day at a time around here.

Oh no!!!!
Hope you get results soon
But the vital elemental formula wouldn't have any intake proteins including wheat/gluten
Kids who are severely allergic any of the top eight allergens are permitted elemental formula which would include gluten for celiac

Hope the Stelara test results give you a path forward.

Poor kiddo

I'm not sure why they would stop formula before the celiac results come back. That doesn't make sense since it's elemental. We use Neocate Jr and it definitely does NOT contain gluten.

Could you ask the doc/nutritionist why the hold on formula? Seems like C needs all the help he can get.

Way to go C on doing the surgery!! That takes a lot of courage. Over time, having a tube will become very normal - M compares it to having earrings! But in the beginning, it is new and scary and intimidating.

Really glad he isn't dealing with damage in his joints. I'm glad Stelara is at least keeping the SpA under control.

I hope you can figure out the next steps soon :ghug:.

Oh hell Clash, I'm so sorry to hear of all that C is going through. :ghug:

I hope you soon have answers and a clear way ahead to get his Crohn's back under control.

Thinking of you both. :heart:

I'm sorry to hear all that, Clash.
Now I have a dumb question. Didn't they run the celiac panel before?

What a rough couple of months--so sorry. Really hope that the G-tube and the possible Stelara dose increase will help.

They wouldn't start the feeds until they got the second dye test back concerning the leak. We did both the dye test and the celiac test yesterday. The GI nurse said we wouldn't start feeds until we got tall the results back. For the feeds, I'm assuming the leak was the issue since that's when we had to stop the feeds (when it was found). The radiologist told us the results not the doc so I guess that's why we're still waiting. Also, the GI isn't convinced at all that this is celiac and said initially that we'd wait on clarification before we started feeds. That scares me a bit that it's something more sinister.

The GI did the procedure, came and talked to me about the duodenum then was headed out of town. He is still out of town I assume since nurse said she'd be out uesterday. We had a pipe burst in our house last summer and a lot of my files were lost, including C's results from his very first scope and upper scope done by a local adult GI. It seems to me there were flattened villi on that scope and he was tested for celiac, pilgrim. The GI nurse called about the biopsy results on Tuesday and is out of office til today or Friday but I'm going to call and ask about it.

Fwiw Ds had blunted villi in his duodenum at dx as well
Hope you get answers soon

I'm so sorry to hear the updated.
I hope you get answers soon!

Oh that makes much more sense - that they'd stop the feeds because of the leak. I REALLY hope that's all it is.

Fingers and toes crossed for you.

Oh I'm so sorry Clash, hope you get answers and good path forward that brings relief.
Fingers, toes, eyes, etc. crossed for you both

Okay so I checked with original GI and current GI. The first endoscopy showed severe gastritis in stomach. There doesn't seem that a scope has shown blunted villi before ( so I'm not sure what I'm remembering?) But C has had a negative celiac panel before.

I dont know what to expect next so just taking it day by day til results cime back.

Hi Clash,
Sorry your son is going through all this again. I wanted to let you know Caitlyn just had scopes and the Stelara with the g tube and Formula and methotrexate all together has Caitlyn in remission for the first time ever since diagnosis though we are still waiting on biopsy results to confirm.
Hoping he’ll have these good results too with the g tube.

How is she using the g tube? 80/20? Thats what C will be doing for at least 8 weeks.

I'm want levels tests at 4 weeks so we can see if there is stelara in his system then. His last scopes did not show the stelara was working. He has been on it a year now. I'm hoping we can keep it and that adding the G tube will help it get him where he should be.

Clash, I'm so, so sorry that C is having so much trouble. It makes me very sad that he is continuing to struggle and that you are struggling along with him. :heart: I am hoping and praying you get a clear path soon and it leads to remission! :ghug:

Just a suggestion re the muscle pain (minor, I suppose, considering all else C is dealing with )... for his muscle pains, when S had back muscle pains, he swore that Tiger Balm ointment helped alleviate the pain. He'd used it before, after hockey and any other time his back ached. What else helped him quite a bit was hot yoga... not sure which muscles are hurting C but, in S's case it was always his back and/or shoulder pains. (I'm not sure how helpful yoga would be for other joint pains.)

Sending you lots of hope that something works to get things under control soon! :ghug:

Hi Clash. I am so sorry to hear about this. I'm checking every day for an update.

My son has complete villous atrophy at diagnosis. That, along with a few other things, raised possibility of a couple of rare IBD's as a secondary diagnosis. One was autoimmune enteropothy. Fur whatever reason villi had recovered at next scope, after steroids and EEN.

Just wanted to check in--have you gotten any testing results back? And how is the tube feeding going? I really hope that it is helping, and that your son has healed up well from the G-tube surgery.

Hi clash,
sorry I never replied. Caitlyn was doing about 90% feeds at first now she is about 75% formula dn 25% food.
With the G tube, Methotrexate and Stelara she is finally almost in remission.

Oh man Clash! Just coming back from a long hiatus and so sorry to be reading about yet more trials for C. What an amazing boy to persevere like this. Well of course he is! Look at his mama! Sending hugs your way and praying that he us soon on his way to feeling 100%. He deserves it!

Sorry I went MIA for awhile. I think I was just overwhelmed a bit by the hamster wheel we seem to be on that doesn't seem to improve C"s disease.

So C started his formula, not at 80/20 or 90/10 but at 65/35. We knew this wasn't the standard done in studies but the GI wanted this for 2 months which is where we were at this week.

We went to the GI today. Chase had gained 6 lbs since he started the formula (he lost 3 right afyer surgery due yo the complications and boo in hospital). Also, he gained a half an inch in height.

The GI just went on and on about how good he looked and even went and had his GI nurse come see him that was there when he was diagnosed but has for awhile only been coming in a day a week. His oyher GI nurse was put of office bit can't wait til we see her since I feel like I talk yo her more than some family members in a month!

So now C will move to 80/20. He and the GI discussed. C is going to give it his best shot. He's mostly been pumping but will bolus some now in hopes of filling his tummy during work hours, social time etc. so he hopefully won't give in the food temptations.

Either way formula will probably be a part of his life for quite awhile going forward. We will be scheduling his mic-key switch for mid-december.

C isn't haven't symptoms, feels good and more energy. Colonoscopy scheduled for next May.

Thanks for all of your support guys! Hope everyone is doing well. I'm going to spend some time getting caught up.

Way to go C :dance:!!! I am SO impressed!! I'm going to tell M about it in the hope that she will be open to trying it.

The Mickey button is going to make his life so much easier. It is so small and unobtrusive. And it can be changed at home very easily (M just learned to change hers - very easy and it didn't hurt at all).

I'm so glad he is gaining and even growing !!

Thanks for the update! So glad to hear about the weight and height (!) gains.