Transitioning into adult life

[greypup]

One of the many things I'm trying to wrap my head around is how our children transition into adult life when they are started out on the big drugs like biologics.

If they use biologics now while they are young what do they have to turn to as adults? How does this work?

I know this question might not have an answer but if anyone has grown up with crohn's, I'm looking to understand how they've managed it.

 

[Jennifer]

I had a resection when I was 17 and went into remission for 14 years after while staying on 6MP. To get my current flare under control I was taken off 6MP and put on Humira, had too many side effects so was then put on Remicade, same problem then was put on Methorexate, same problem (I was put on Entocort while on Methotrexate). I was put back on a low dose of 6MP along with a low dose of Allopurinol, Pentasa and continued with the Entocort. So far things are looking good and I'm weaning off the Entocort to make sure that my symptoms don't return.

Basically when something doesn't work you try something else. Everything is trial and error. I keep researching different treatments and talk openly to my GI about how I'm feeling because I want to make sure that I'm doing well and if I'm not doing well then it needs to be taken care of as quickly as possible before things get worse. I haven't tried Cimzia, LDN, EN, fecal transplants or VSL#3 etc (I will not try worm therapy, but that's just me) and there's bound to be new options in the near future like there always has been ever since I was diagnosed as a kid. So in a way there isn't quite an "end of the road" even though sometimes it feels/seems that way.

For those who have tried everything and continued to have problems they may need more drastic measures like repeat surgeries or a stoma. I used to fear having a stoma but after meeting many people on the forum who have one, they are feeling so much better and feel like they have their lives back so I'm no longer afraid of the possibility.

Best thing to do is stay on top of your health by keeping track of your symptoms, see your doctors regularly, do tests on a regular basis and basically try to be as healthy as you can be. Also everything you/the parents do to take care of us, we need to know how to do it too.



This isn't quite related to your questions but I feel like its important to share. The hard part for me is dealing with insurance and keeping up with blood work and all these doctor appointments. All I had to do when I was a kid was follow my mom. Now that I'm an adult I had to quickly learn how to take care of myself. I screwed up hear and there but I figured most of it out yet still have much to learn (especially when it comes to dealing with Social Security since I receive SSI). What I'd like to suggest to all parents is to involve your child more so they have a better idea of how to take care of themselves once they've left the nest. Many of us will switch to a new GI who deals with adults so we need to know how to look for one, a GOOD one. My first adult GI was terrible and caused me to be fearful of scopes when the prep used to be the only bad thing about them. Try to prepare them as much as possible even if they find it boring or say, "I know."

Edit: Also if your child is on disability, teach them then ins and outs with Social Security. I was with my parents today (here I am 31 years old) and told them that I'm having problems with my SSI (the amount is being majorly reduced because of my husband's wages). My mom said something along the lines of, "just request the full amount." And my dad replied, "ya, Social Security is just jerking you around because they don't want people to fight for what they need." I didn't know I had options.

 

[Sudsy]

My younger dd started on Remicade this Fall. What helped me was to find out about all the different types of biologics that there are, and if, say, Remicade stops working, you can go to, say, Humira. There are several, including new meds like Stelara that may or may not end up being widely used in the future.

My older dd just turned 16 and I took her for a one-time consult with a really fabulous adult GI who specializes in Crohn's. He is truly the best doctor I have ever met in any field (and I am a RN!). I sat in the room with them and tried not to say a word, as that is really what her life is going to be like in two short years. Anyway, they made a plan for her and spoke about how, as she it entering adulthood, she will need to take more responsibility for her Crohn's and with that comes making choices about her treatment (they decided together that she should come off the Specific Carbohydrate Diet, which worked wonders for her when she was younger, and was making her nuts now....)

Anyway, my method of dealing with the future is to:
1) know there are almost-always other options out there (whether meds, diet, LDN, etc)
2) know that more things are being researched every day and who knows what will come along by the time our kids need it
3) PRAY.....

 

[upsetmom]

Linda l wouldn't worry about it too much..:ghug:

Our kids are only young and new medication is always coming out.

Hopefully there'll be a cure in their lifetime.

 

[CD mom]

It is a challenge. My son was diagnosed at age 7 in 1999. He is now almost 23. I tried to slowly have him assume responsibility for taking meds and his Peds GI doc made a huge effort to involve my son in the discussions regarding his treatments, meds and tests. However, once my son left home for college, he quit meds and had several scary obstructions. He just didn't care and was tired of it all. Finally, upon a return visit to his doctor at Mayo, the GI doc (certified in Peds and Adult GI) laid it all out for him. Told him the cold, hard facts; he was in the highest risk CD population, had the potential to relapse without meds, and had to face up to the facts regarding his disease.
That helped tremendously...for a while. Then he quit taking meds again. Another obstruction. Then c-diff. Then more hospitalizations in local hospitals. Discontinuity of treatment compromised his health tremendously. He closed up and refused to listen to his parents or the doctors. Finally, after moving out west and living alone...he became critically ill and disabled. He sought help from several GI docs in LA, but after being treated shabbily and disrespectfully he again gave up. Stayed in bed for 2 months with c-diff. Lost 40 pounds. Had to hire someone to come into his apt and assist him with daily care. At the age of 21 and 22...it was demoralizing. Quit school, was unemployed.
He finally asked me for advice. I "suggested" he return to the best GI doc he ever had....Dr. Faubion at Rochester Mayo.
Fortunately, he took my advice. He said he has never felt so professionally taken care of since he was being treated as a child. He felt that he finally had hope and a handle of control of the disease. Dr. told him the main issue was his QUALITY OF LIFE. That is now his goal; to improve his quality of his daily life.
It is something my son had to come to terms with. Seeking treatment from several adult GI docs that just weren't a good fit resulted in him giving up...and then finally asking me for help.
Tough journey for sure.
:hang:

 

[Tesscorm]

I agree with above re new meds coming along. It's hard to feel reassured by 'things' that aren't available yet but, there's no reason to feel treatments in crohns won't progress in the future. The past 10-20 years have brought greater understanding and new treatment options, so no reason to believe this won't continue.

Also, keep in mind that, by asking current adults who were diagnosed as children, these adults did not have all the options that we have today, the path their illness has taken may have been affected by the fewer options they had available at the time. And, as in Jennifer's experience, it is sometimes possible to return to previous treatments.

Also, re involving your children. I have tried to pass on what I've learned to my son. I have had the bored, rolling of the eyes, the 'huh, sorry what did you say?', etc., etc. Yet, he has surprised me on more than one occasion with very specific questions for the GI. He clearly understood the terminology and implications of what his GI was explaining and his questions were 'informed' questions! :ywow: So it does sink in!! :applause: Now, that's not to say he ALWAYS does what I think he should and, being a teen, does still have a sense of invincibility BUT by being informed, I think he does take that information into consideration when deciding how to live his life/manage his crohns.

And, good point Jennifer, re issues such as SSI, etc. I've focused more on teaching him about his illness, probably time to start adding the 'logistics' of crohns as well.

 

[greypup]

I really appreciate all of the perspectives above. You're giving me a greater sense of balance.

I keep operating from the perspective that we need to make the right decisions for the moment but I also want to be looking ahead a step or two in order to make the best decision for right now.