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Crohn's Disease Forum » Your Story » Question about stubborn teenager


04-24-2014, 12:00 PM   #1
Clapton
 
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Question about stubborn teenager

Quick question. Is it possible to be diagnosed with perianal disease and crohns ( both in its mildest form) and not have it progress any further, sort of stay in this form for ever? My 17 year old thinks this to be true and instead of remucade he wants imuran becuse it's more convenient and when/ if he gets sick he will " deal with it"
Does anyone else have a teenager who thinks they are infallible ?
04-24-2014, 12:07 PM   #2
theOcean
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I don't think he understands quite how severe perianal disease is. Mine was at its worst at the same time that I fell into my worst flare, and I was so sick I nearly died. It's better to be hypervigilant than to think you can just deal with this whenever it comes to a head. Crohn's (and perianal disease) isn't really like that.

If his Crohn's really is more mild maybe it won't be like how it was for me, but I really think he should try and treat himself as best he can now so he doesn't get incredibly sick later.

Even if he does just go with Imuran, I think it would be best to at least get him on antibiotics to treat the perianal disease. If that doesn't get better, then he may have to reconsider Remicade.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
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04-24-2014, 12:16 PM   #3
valleysangel92
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Hi

Ok, honesty time...

There are *some* cases where crohns can sort of just simmer away and not cause much bother for a while, but it will generally get worse eventually, and it's very, very rare for it to get any better without the correct treatment. Perianal crohns is one of the most difficult forms to treat, and without wanting to scare you, it is the most prone to complications if not dealt with well enough.

I understand that the infusions are inconvenient, but I figure having to leave school and have surgery because he's not dealt with it properly would be even more inconvenient.

Am I right in thinking that your son already has a fistula that may be healed? If this is correct then he already has pretty advanced disease, and fistulising disease is very hard to treat well.

We all feel a bit indestructible when we are young, and if he doesn't feel that sick then I can understand it being hard for him to appreciate how serious this disease is.

I would sit him down and let him know that this isn't about being convenient, crohns really doesn't care about that, it's about trying to get a difficult, serious condition under control in the fastest, safest way possible. It won't be fun, but after a while he'll get used to the schedule. Let him know that if it's not treated right, it could mean hospital admissions and surgery, and it could mean he has to give up a lot more than the meds will.

Maybe get your son to come and have a chat to us.

If he doesn't want to join the forum, but would like someone to chat to, then I could inbox you my email address ? I'm 21 but I've had symptoms from age 15 , my crohns wasn't picked up as early as it could of been and ended up nearly derailing my education completely.
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04-24-2014, 12:19 PM   #4
theOcean
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I would also offer to speak to your son. I'm 22 and I was diagnosed at 19.
04-24-2014, 12:27 PM   #5
Clapton
 
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Its as if you know exactly what my son is thinking.
After the colonoscopy the first thing the dr mentioned was perianal but my son had no clue what he was talking about and said he was feeling no pain. he wants nothing to do with forums and always says "why do you have to keep talking to people about this, im fine" His favorite is "Mom your overthinking everything and always think of the worst"
I think reality has just sunk in and he realizes this is not going away but if he says hes fine" we wont make him do anything about it.

We are going through all the preliminary test you need to do before you start the remicade or anything else. This too is an" inconvience" for him.
We may just have to give him time and before the next apt. have a real sit down with him.
Thanks once again, your advice is truly helpful.
04-24-2014, 12:29 PM   #6
theOcean
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I'm sorry to hear he's being so dismissive of your concerns, especially since I think you're trying to do something really good for him My parents certainly didn't try to educate themselves the same way you are.

Good luck. I hope he realizes it's for the best.
04-24-2014, 12:33 PM   #7
Clash
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I agree with the Ocean, if he has perianal disease, fistulas and such then his CD is already severe. Generally those diagnosed before 18 have more aggressive disease. There are articles about this in the Parents research thread, I believe, if you want to browse through them. With my son we chose to treat aggressively in hope of stopping the disease before it involves stricturing or becomes fistulizing since chances of surgery increase with those forms. Since he is young(17) we didn't want him to have to start facing surgery now as this disease is life long(high incidence of more surgeries after the first).

I'm going to tag my little penguin and patricia56 as they can give you more information regarding children 18 and under and progression of disease.

There is a choice in biologics other than remicade. There is humira which is self injectable and Cimzia which is also self injectable. These would me more travel friendly, although they do have to remain refrigerated until use.

There have been things that my son and I have clashed about regarding treatment. I think it is inevitable, since it is a time and age where they are seeking independence. If he is over 18 and in charge of his medical appointments I think all you can do is present all the facts and your concerns and then let him decide. HUGS!
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04-24-2014, 12:45 PM   #8
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No offence intended but how educated is your son regarding his disease? Im 18 years old and I thought crohns was a minor inconvenience because I wasn't dying at that moment. It wasn't until I started researching crohns did I learn how serious it could be. Its more of a long term disease that gets worse over time. Perhaps it would be a good idea for him to get on this forum and read some stories, specifically about perianal disease. Not to scare him but just to prepare him and educate him.
04-24-2014, 01:01 PM   #9
Jmrogers4
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Oh yeah the "I'm fine" hear that often...
My husband has perianal disease and crohn's and has been on Imuran for 13 years with no problems but he was diagnosed at age 25, as Clash said anything before age 25 is likely to be more aggressive. He had many issues before starting Imuran.
My son on the other hand who will be 15 in a couple of months, Imuran was not enough and we had to move to remicade. He actually thinks the remicade is more convenient since he doesn't have to think about it everyday and remember to take a pill just go every 8 weeks nap for a couple of hours or play video games/watch a movie and then not worry about it.
He did not want to do remicade but now that he is on it he says it is the best medicine ever! He feels great and he would have said he felt "fine" before and really he did not have the classic symptoms he did not grow/gain weight due to simmering inflammation but he always felt fine.
I think it's harder when they feel fine because then they feel they don't need their medicine or can skip a couple of days "because they feel fine"
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Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-25-2014, 08:39 AM   #10
Tesscorm
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Tough situation...

Can you just have an 'unemotional' discussion with him and simply lay out the pros and cons of each path? ie explain the risks of untreated and undertreated crohns, even the possibility that, perhaps, things won't worsen but that while nothing is impossible, it's very unlikely that the disease won't worsen. Explain what the possible outcomes will be - the consequences of fistulas and/or abscesses, the subsequent need for surgery, the 'downtime' while he's recovering from treatments/surgery, how this will impact his plans for school and travel and complications/scarring left after surgery. The upside of 'not' treating is simply skipping the act of not taking his medication (but quite a small 'upside' compared to the consequences of under treatment). Also, this 'upside' will be temporary because, eventually the disease will worsen and he'll then have to agree to his meds anyway.

As far as choosing meds - I don't have experience with imuran but also discuss the requirements of imuran - it is daily (at least once a day??), this will always have to be a factor in planning (ie away for the weekend - take the meds), carry extra meds always in case of a last minute decision to stay at a friend's place, etc. (If not planned for and meds are missed, you're back at the consequences of un/undertreated crohns.) What does his doctor say about using imuran only? It may be that imuran will be enough??? But, I don't know as my son has never used it nor has he had perianal issues. If imuran is sufficient, there are benefits as well... it is easy to carry, convenient in that it can be done anywhere, etc.

And, also truthfully discuss the pros/cons of remicade - it's success rate is improved when it's used as an initial treatment and when used soon (1-2 years) after diagnosis. So, if you're going to use it eventually, why not when you can get more 'bang for your buck'? He only needs to 'think' about it every 6-8 weeks, he doesn't need to worry about dosage, etc. - he walks in, they prep him and he can sleep, watch a movie, listen to music, do homework, etc. for the two hours. However, he does have to make time for the infusions on a regular basis and he does have to plan ahead to make apptmts that will fit his schedule as best as possible. Another benefit with remicade is that they will do blood work at the same time, so no need to go to a lab to have blood drawn on a regular basis (as will be required with imuran).

There's also humira? Similar to remicade but without the need to go to an infusion centre. He will learn to self-administer the injection so again, transportable, convenient, etc. but, have heard it is painful and must be done every one or two weeks (so, again something that must be planned to a degree).

In the end, I would tell my son that given his age, he certainly deserves to be part of the decision, however, if he intends to take on the responsibility of making the decision, he must also take on the responsibility of making an 'educated' decision as he will be the one who will suffer the consequences the most (although, we know as parents, we will be suffering right along! )

This is pretty much how I have dealt with my son in his decisions re treatment. He had been on only supplemental EN when we moved to the adult GI (when my son was 18) and his adult GI wanted him to go on remicade. To be honest, the med scared me and I would have preferred he tried another less traditional treatment first, however, the GI and I discussed all of the above with my son and it was my son's decision to move to remicade as he didn't want to risk undertreated crohns. I believed my son had made the best decision he could with the available information (as I was doing) and, as neither of us have crystal balls , I couldn't fault him for not making the same decision as mine would have been.

I hope this helps... it's a tough situation for him to come to terms with and very tough for us, as parents to accept and watch our children deal with it.
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July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
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04-25-2014, 12:13 PM   #11
Clapton
 
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thank you. I have decided to go the tough love route and hand him some information and tell him "read this then make a decision" right now I think it just needs to sink in.
04-25-2014, 04:03 PM   #12
DJW
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Hi. It's a difficult situation. When I was in my early teens all I wanted to do was ignor the crohns. I had fistualizing crohns and became seriously ill. I wish remicade was an option back then. I've had lots of surgeries and deal with strictures on a regular basis. One blockage and an NG tube is enough to get most people saying they don't want that ever again. PM me if you wish.
Sending you my support.
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04-25-2014, 04:04 PM   #13
Kero
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Darn kids thinking they are infallible and immortal! I would definitely take the advice of everyone here. Tell him to do some research. Or if you think you may have to scare him into it, google images and show him what could happen. Might be enough to make him decide on the Remicade
04-25-2014, 08:56 PM   #14
Tesscorm
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It's hard when facing 'tough love' both to give it and see your child receive it.

But, actually, you reminded me of our first or second meeting with our adult GI. While with the ped GI, there were few discussions when serious side effects were mentioned (at least not with my son there), however, when we were discussing various treatments with the adult GI, he flat out told my son that if he had UC (ulcerative colitis) he might have the option of 'living' without a large colon but, as his crohns was in the small intestine and undertreatment could possibly mean future surgery to remove part of his small intestine, that he should be aware that you cannot live without a small intestine. While I didn't agree with his GIs bluntness (as my son was nowhere needing surgery and certainly not needing ALL his small intestine removed! and I felt he was scaring him unnecessarily), he most definitely made the point that the inflammation needed to be controlled.

In no way am I suggesting you speak this bluntly to your son (because I do feel the GI was unfairly or, at least, going overboard in using scare tactics!!) but the 'tough love' idea did convince my son that treatment was not something to be taken lightly.

Good luck!!
04-26-2014, 01:27 AM   #15
DustyKat
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Does anyone else have a teenager who thinks they are infallible ?
I do!

I have said it before and I will say it again... a (insert teenage age here ) with Crohn’s is no different to a 17 year old without Crohn’s. They all think they are infalliable!

Dusty. xxx
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04-26-2014, 06:48 AM   #16
Catherine
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^^me too.

She 18.
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04-26-2014, 10:09 AM   #17
SupportiveMom
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My teenager used to be like that, nothing could hurt her, live forever... her last bout at the hospital has changed that. Her attitude changed just prior to going in. I thought it would pass once we got out after a few days. I think because of her still feeling like crap and still not getting back to school (and an ER visit) she isn't feeling so invincible. She had a big event this weekend at Temple with more than 200 kids in from the east coast. She is recognizing her energy and ability and saying she can't participate in part of the day, and says she needs to rest. I am glad she thinks this way but I know it is not normal and she should be thinking she can do anything. I am hoping the attitude changes back.

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