Its been a really long time

[Clash]

Hi everyone! It's been a long time since I've actually posted much. I hop on now and again just to catch up with all the kiddos...wow most of our originals arent kiddos anymore!

A quick update on C. His G-tube came out some time ago. It was at the point where he be switching to an adult GI so it wasnt replaced. He hadn't been using it with any frequency anymore but wasnt sure if he was ready to completely let the idea go.

He had a scope a few months ago and we were just able to make the follow-up. He wanted to get some things behind him and had actually been interested in a clinical trial.

Follow up went well. He still has inflammation at his anastomosis from the ileocectomy, he has maintained his weight, even gained a tad. His numbers look good. Oh and for the first time since Dx his iron numbers were really good as well as HGB.

His stelara level was low. Doc thinks its partially due to the fact C started the med before it was out of trials so he didnt get the benefit of the infusion in the beginning so we are going to do it now. Then after we see what that accomplishes he will add mtx back to the regimen.

I keep you all in my thoughts and prayers! This forum truly is a life-saver and I'm so glad it was here when I was frantically researching my son's dx.

 

[pdx]

Thanks for the update! I know that a lot of our kids aren't really kids anymore, but it's great to hear how things are going with them. Glad to hear about the good lab numbers, and I hope that the Stelara infusion and addition of mtx are helpful.

 

[my little penguin]

Really glad he had a good appt
How frequent is his Stelara?
Ds needed it at 90 mg every 4 weeks woth mtx but is doing well arthritis/crohns wise so ....
Maybe an option

glad they are giving the infusion

hope it calms down soon

 

[Jelly loves Peanut butter]

Yes thanks for the update and glad to hear things are going well

 

[Clash]

Stelara is still at every 8 weeks right now so definitely room to play. Doc said we'd change one thing at a time to keep things simple to track unless symptoms, lab work etc showed need to move quickly.

 

[Tesscorm]

So glad to read that C is doing well! I hope the infusion brings his stelara levels up and he continues on smoothly! Is he at school? Working? (Because, as you said, many of the kiddos aren't kiddos anymore!)

Also hope all is well with you!!

 

[Maya142]

Clash, so glad to hear he's doing ok. Looks like you definitely have room to go up on the dose with Stelara! How's his arthritis doing? Is he still monitored by an adult rheumatologist? I ask because a kiddo we know switched from Humira to Stelara a while ago (16 year old, male, HLA B27+) and he developed sacroiliac joint disease while on it. Studies for AS were stopped, as you probably know, because Stelara does not work for axial/spinal arthritis. That kiddo has Crohn's and juvenile spondy too, and was on the 8 week Stelara dose and has now been switched to 6 weeks or 4 weeks - not sure which.

We have found the same with feeding tubes - feeding tubes are commonly used in the pediatric GI world, but in the adult world, they're not common. We've had plenty of nurses say they have never seen a button tube - I guess for older patients they tend to use long tubes and they often have no idea how to deliver medication through it. We have learned to carry extensions for hospital stays/procedures etc. because they never seem to have the right kind.

My kiddo (and as you say, she is no longer a kiddo - she's a young adult!) really wants to get rid of hers, but needs it on and off for feeds/medication. How do C's G-tube site heal? We have been told both good and bad stories on G-tube closures and scars, so I know M would LOVE to know. She has two tubes and her GI told her once that scar would look like a belly button kind of and she's a bit worried about having 3 belly buttons LOL.

So thrilled that he's doing relatively well!! Is he working or in school?

 

[Clash]

Tesscorm, C is working close to full time right now. He wants to start back classes soon but is really scared to overload himself and have an active flare.

 

[Clash]

Maya C's scar for the tube looks pretty good. It is a little more raised than his laparoscopic surgery scar but its early on yet. It has healed nicely and he's been happy with how it has gone so far.

 

[Maya142]

Clash, my daughter may have some questions the tube removal, so we'll PM you if that's ok.

Way to go C for trying to work full-time and take classes at the same time. I'm even more impressed with his maturity - not many young adults will admit stress can cause flares or they're doing more than their bodies can take. My daughter is one of those that pushes herself to take challenging classes at a very competitive school until she is a medical disaster. I wish C could teach her a thing or two! I'll definitely tell her his story!

Let know how he feels after his infusion - we will keep him in our thoughts.

 

[Tesscorm]

Can he take a quasi 'short term leave' or sabbatical from work to complete his classes? So that he can get his education finished and behind him? I know that, for both my kids, LOTS of stress was gone once school was done! While there were stresses and concerns over the first year, while transitioning from student to full time employee, once they found their footing, it was easy to see a burden had been lifted. Now, they do stress over work-related issues but it's not to the same degree as worrying about exam/assignments, their marks, what their future will look like after school, will they find a job, etc.

Hopefully, he can get his classes done soon, without worrying about losing his job.

I hope all works out smoothly re Stelara!!

 

[Clash]

Maya message me whenever. I'm checking in at least once a week again and I'll answer any questions you may have!

 

[Clash]

Tesscorm, it's really apparent after taking a lengthy break from school that it is a stress unlike his work stress. He can rock right along at work but school causes an anxiety and stress that has more than once sent him in a downward spiral.

He has a therapist and they have been working on that aspect of his anxiety but he tells him it's a marathon not a sprint. C worries sometimes that everyone has passed on him with education but he also knows his body and knows when he feels ready.

I try to just hang back and support decisions because I really can't say I know how he feels.

 

[Tesscorm]

Yes, my daughter is the one who stresses and worries more... although the first year out of school was still stressful (for both of them - of course, each had their own concerns, questions re future), once they got some traction in what they wanted to do, in a job they were enjoying, the stress just dropped off. Of course, there's always the 'extra work' gripes or the person they don't like, etc. but NOTHING like multiple assignments due, studying for exams, decisions re courses, etc.!!

Well, if it's any consolation for him, remember S took an extra year at high school (voluntarily) so he started university a year after everyone else. Also, and maybe this is more common in Canada/Ontario??, neither of my kids took full course loads. Depending on the courses they required each year, they would then decide on taking 4 or 5 courses per semester. If I looked back, I'm sure they took 4 more often than 5 (which is a full course load here). Plus they each had to redo more than more course through the years. So, both kids took longer than 4 years to finish a 4 year program.

In particular, in S's case, delaying his start and taking his time with the courses allowed S to come out with more applicable courses for what he was more confident in what he wanted to do. I've seen that many of his friends took quick, easier courses and are now struggling to find their place in the working world. Not due to a lack of education but because, I think, they just wanted to get it done and, perhaps, didn't take the time to really consider if they were enjoying it. Just because they graduated sooner, they are not further ahead now... so, the therapist is correct in saying it's a marathon! (Although, it's tough for a young adult to NOT want to just finish school and get on with it! )

Both kids took one online course in some/most summers - partly to shorten the years at university and partly because some courses were less demanding that way.

 

[crohnsinct]

UGH! These kids have the rest of their lives to work! I hate the pressure put on them by society to conform! I am so glad S is listening to is body, both physical and emotional. That is a maturity like no other. You did well there mama!

 

[Maya142]

I don't know if this helps him Clash, but my daughter, due to all her medical issues, is likely to graduate at 24. So he's far from alone. My older daughter graduated at 23, due to her AS. They too have struggled with the pressure of graduating "on time" but we have tried hard to convince them that the schools aren't going anywhere, and taking a semester off to focus on their health is not a bad thing - it's important to put their health first. It's frustrating because schools do expect students to graduate in 8 semesters, so there is this pressure, though behind closed doors, the deans/admin always have told my daughters to put their health first.

I don't know how much they believe any of us, but both have taken a medical leave of absence - my younger one has done it several times. It's sometimes the necessary option, as hard as it is. And there is no such thing as "on time" - I try to tell them everyone follows their own path. There is no need to rush. Many of their friends are now doing grad school or working or medical school and I know my younger daughter in particular feels like she is "behind." We're working on it - it's a work in progress for now.

Anyway, sending hugs.