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Crohn's Disease Forum » Parents of Kids with IBD » Growing up, transitioning to adulthood and dealing with crohns


 
09-11-2015, 06:22 PM   #1
kimmidwife
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Growing up, transitioning to adulthood and dealing with crohns

Caitlyn is in terrible pain once again. The doctor wants her to go back on prednisone but she is refusing. The pain seems to have worsened when we decreased the methotrexate because of the side effects. Caitlyn claims it has been bad the whole time that she just wasn't complaining as much. However Caitlyn has never been one to hold back with co plants of pain so I am calling her bluff on that. I know she hates the methotrexate but she also hates the prednisone. She is driving me a bit crazy. I know she is beings typical teen but she is turning 18 and I feel like she needs to start growing up and taking on some accountability for her disease.
What do you think?
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
09-11-2015, 06:57 PM   #2
Maya142
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That's a tough situation to be in. M also had to decrease MTX because of side effects (in her case, nausea and dizziness). Eventually the side effects got so bad that she'd be in bed for two days every week and at that point, she completely refused to take MTX anymore.

I made M discuss it with her doctor herself (she was 15 or 16 I think) and she handled it very well - she explained why she hated it and her rheumatologist really listened which made her feel better. In the end she decided to discontinue it even though her rheumatologist warned her she might flare (and eventually she did. We have since found other options for her -- Imuran and then Arava, though I understand that Caitlyn may not have those options).

What has helped most is seeing a psychologist - there are many things M has hated but has to deal with in the past few years (the NJ tube for one). She generally starts out as being stubborn and wanting her way, but I try not to push her too much because at the end of the day, she has to learn how to manage her medical care. Talking it over with her psychologist helps and she usually makes a good, responsible decision after speaking to her(eventually - really does take a while with her!!).

It's so hard -- it's been quite a process to get her to even this place. Her psychologist actually works in the IBD clinic and has a lot of experience with kids with chronic illnesses and that definitely helps.

Has Caitlyn ever seen a psychologist? Would she be open to it? Alternatively, could she discuss the pros and cons of going back on pred with her GI, so she understand her GI's reasoning? Would Entocort be an option for her?
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-11-2015, 07:13 PM   #3
crohnsinct
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Kim...just thinking...could the pain be from her gastroparesis and not Crohn's? Sorry IDK what they do for GP pain...maybe same thing but just trying to think of other causes...although it did flare up once the meds were decreased so that is probably it.

Sorry can't help much on the compliance. My kids are generally pretty good about that stuff. Unfortunately, this may be a case of her having to experience the consequences of her decisions and learn from her mistakes.

I agree with Maya that maybe some counseling could help her wrap her head around the decisions etc a little better.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
09-11-2015, 07:25 PM   #4
Maya142
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CIC -- Unfortunately, there's not really all that much you can do gastroparesis pain. There are very few motility drugs and some of them aren't even approved in the US.

For M it is very easy to distinguish GP pain from Crohn's pain - Gastroparesis pain is in the stomach area and is only after meals and comes with (severe) nausea usually. Crohn's pain is lower down (lower right side for M) and can bother her at any time.
09-11-2015, 07:54 PM   #5
Lady Organic
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Im sorry for this situation,
its indeed very difficult to see a loved one engaging in detrimental attitude or behaviour.
is she fully aware of the possible consequences of letting the disease going active?
I second the idea of seeing a psychologist or a medical social worker to help her out on how to accept and manage her condition in a way that will be beneficial to her.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
09-11-2015, 08:00 PM   #6
Pilgrim
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Would she be open to writing down her reasoning and then discussing it with GI? I find that sometimes writing out the reasons can help sort it out in a kids brain and sometimes they end up coming to the same conclusion that you do.

As far as the 18 year old part - have one in our home, too. They definitely do need to grow up. No advice, but lots of empathy.
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
09-12-2015, 03:54 AM   #7
Sascot
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Very hard to deal with. Not sure what you can do other than let her know what you think and hope she listens. Could she get an appt with the GI and discuss it herself. Kids don't always like to listen to their parents! We are nearing that age, not looking forward to it
09-12-2015, 07:08 PM   #8
awmom
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I'm so sorry Caitlyn is going through such a rough time....i hate it that our kids have to even be thinking about these things and trying to make decisions that are sometimes "the lesser of the evils" type decisions. I think what several have already said. Giving her the options, and the allowing her the time to really process the info. I know for N, he often said "NO" at first, only to find that yeah, he really did need to do it. I'm thinking prednisone, and going on a liquid diet, drinking the elemental formulas, getting a second opinion....still haven't convinced him of other things though...

I wish there were a way to find out what exactly is causing the pain....is it a stricture, is it the GP, is it ongoing inflammation. I also wonder about entocort instead of the prednisone if she is having ongoing inflammation in the latter part of her intestine. N never used to tell he he had pain. Well the other day the GI asked him if he felt the surgery had helped at all and he said it "helped with the pain some".....I asked him if he had any pain now and he said "i dunnno, maybe, sometimes." But you are right that they will need to start taking charge. I think she will make a good decision given a little time. I think sometimes they just want to feel like they have some control over things. I also agree that talking to a therapist could help tremendously.....and that in fact will help them feel more in control. Unfortunately I haven't convinced N to see one.....my non verbal kid.

I hope you find a solution soon to get the pain in control and get her feeling well. It has to be so hard on you as well. Warm regards
09-12-2015, 08:11 PM   #9
kimmidwife
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I am working on getting her to see a psychologist. She used to see one that she really liked before we moved here. We had a long talk last night and in the end after speaking with the PA we decided to raise the methotrexate back up slightly to try to get the effectiveness without the side effects and hold off on the prednisone for now. She seems to be feeling better today. My fingers are crossed that if we can avoid prednisone for now. We did discuss entocort instead but it doesn't work as well for her.
We will also be calling Monday to the office for an appt.
thank you everyone for your advice and replies. I am having a tough time right now with my own illness so am overall not coping well with things. 😓
09-12-2015, 08:16 PM   #10
Maya142
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Fingers and toes crossed that increasing the MTX works (and without side effects).
Sending hugs -- hope both you and Caitlyn feel better SOON
09-12-2015, 10:04 PM   #11
Lady Organic
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is she on methotrexate pills or injections?
09-13-2015, 03:06 PM   #12
kimmidwife
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Lady organic,
She is on the shot and hates it. She hates needles.
09-13-2015, 04:02 PM   #13
Maya142
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Have you tried Buzzy? My older daughter got it for her Humira shots. It doesn't help the burn of Humira but she says she doesn't feel the needle at all anymore. It might work well for MTX since it's just the needle that hurts.

My younger one also tried EMLA cream for an IV and said it barely hurt at all. That might work for MTX too.

http://buzzy4shots.com
09-13-2015, 04:27 PM   #14
kimmidwife
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Maya,
That is not a bad idea. I am going to look into it.
09-13-2015, 05:23 PM   #15
crohnsinct
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Yeah, even though O doesn't have issues with needles she trialed buzzy bee for the infusion center and she told them it really works.
09-13-2015, 05:31 PM   #16
my little penguin
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Emla cream also numbs it so she won't feel a thing
Just wait 30 minutes or more
We now use it for all blood draws even though Ds is ok with needles
He is just tired of getting stuck
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09-13-2015, 05:33 PM   #17
Maya142
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Same here - M has no issues with IV/blood draws but when they offer EMLA she always takes it. She says it really helps, so why not?!

I will get S to try Buzzy with her MTX shot tonight and get back to you. I'm pretty sure it will work.
09-13-2015, 08:46 PM   #18
Maya142
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S says that buzzy worked great for MTX - she didn't really feel the shot at all. She also says that Caitlyn should try icing the area before the shot (if she hasn't already done that).

Good luck!
09-14-2015, 02:23 PM   #19
Tesscorm
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It does seem to be an almost impossible challenge trying to reason with teens! While S has been compliant with meds and decently so with supplements, his diet and drinking at school are things I've tried to tackle. While not as harmful as skipping meds, I have told him over and over that if he takes his well-being for granted, he will eventually pay the price. That there is no magic that makes him different from others , he will have the same consequences and he is not invincible. I've also stressed that while it will break my heart to see him suffer, in the end, it will be him who will be feeling and suffering the consequences. Also, pointed out the obvious that I can't be with him 24/7 and that, given his age, these decisions are his... he knows what I'd like him to do (not do) but the ball is in his court.

Not saying that it's worked 100% but I do see that he takes his illness seriously and does make an effort in his diet (hard for him given how picky he is!).

I also agree with having her discuss the issues with her GI. When S was initially dxed, at almost 17, I thought a discussion re alcohol, drugs, etc would be beneficial. So, I sort of cornered S and the GI by bringing it up, matter-of-factly stating my concerns (gave no opinion) and then said I would leave the room so that S and the GI could discuss in private and S could ask whatever questions he wanted. This way, I knew the GI knew of my concerns and would discuss them with S and, hopefully, prompt S to ask his own questions. This approach might work with C if she is hesitant to start the conversation or admit how much she wants to avoid meds to the GI.

Good luck, it certainly isn't easy, especially as you're not feeling well either!

Hugs to both of you!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
09-14-2015, 05:41 PM   #20
Clash
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It does seem to be an almost impossible challenge trying to reason with teens!
No truer words have ever been spoken!

I honestly can't believe how fast I lost all my wisdom and his knowledge expanded(not from any hard research mind you) to the level of guru in all things CD. Honestly, in all things, period!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
09-18-2015, 10:41 AM   #21
kimmidwife
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We had a pretty good appt with the GI yesterday. He upped her amitriptalline to see if it would help her pain. He wants a FEcal calp. to see what is going on and depending on those results make a plan what to do next. He is also thinking of making the entyvio every four weeks instead of eight.
09-18-2015, 10:16 PM   #22
Mehita
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Is that a typical jump for Entyvio? Not six?
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
09-18-2015, 10:23 PM   #23
Maya142
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Did he say anything about the MTX side effects? Any suggestions to make them better?

Hope the increased dose of amitriptyline works soon .
09-19-2015, 02:27 AM   #24
Sascot
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Glad the appointment went well. Hope the increase dose helps.
09-20-2015, 03:51 PM   #25
kimmidwife
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Mehita,
I also wondered why right to four and not to six but did not have a chance to ask him as it was the end of the appt and there was a lot going on. I plan to ask at our follow up. Meanwhile she continues to have a lot of pain.
09-20-2015, 10:42 PM   #26
awmom
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Glad the appointment went well.....I hope that the amytriiptaline works for her pain soon (maybe it takes a few days?) and that YOU are feeling better also.
09-21-2015, 06:12 PM   #27
kimmidwife
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No improvement in pain. We started her on entocort as well.
Her pain is different and in a different spot. Usually her pain is pretty much always right lower quadrant and feels like knives stabbing on and off. Now it is right above the umbilicus and she says it keeps feeling like someone is punching her there. The pain happens after eating or drinking anything.
Amy thoughts on what this different pain can be?
09-21-2015, 07:02 PM   #28
Tesscorm
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Poor Caitlyn! I don't have any ideas but just sending hugs... she (and you) have been suffering through this for too, too long!
09-21-2015, 07:45 PM   #29
kimmidwife
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I know Tess, I feel like she is never going to be in remission. 😓
09-21-2015, 07:57 PM   #30
pdx
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So sorry that she's having so much pain (and that you are not feeling well either). If you switch the entyvio frequency, would her next infusion be soon?
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
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