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Growing up, transitioning to adulthood and dealing with crohns

kimmidwife

kimmidwife

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?
 
Maya142

Maya142

Moderator
Staff member
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?
 
C

crohnsinct

Well-known member
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.
 
Maya142

Maya142

Moderator
Staff member
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.
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
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.
 
Pilgrim

Pilgrim

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.
 
Sascot

Sascot

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
 
A

awmom

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
 
kimmidwife

kimmidwife

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. 😓
 
Maya142

Maya142

Moderator
Staff member
Fingers and toes crossed that increasing the MTX works (and without side effects).
Sending hugs -- hope both you and Caitlyn feel better SOON :ghug:
 
Maya142

Maya142

Moderator
Staff member
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
 
C

crohnsinct

Well-known member
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.
 
my little penguin

my little penguin

Moderator
Staff member
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
 
Maya142

Maya142

Moderator
Staff member
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.
 
Maya142

Maya142

Moderator
Staff member
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!
 
Tesscorm

Tesscorm

Moderator
Staff member
It does seem to be an almost impossible challenge trying to reason with teens! :yfaint: 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! :ghug: :ghug:
 
Clash

Clash

It does seem to be an almost impossible challenge trying to reason with teens!
Click to expand...
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!
 
kimmidwife

kimmidwife

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.
 
Maya142

Maya142

Moderator
Staff member
Did he say anything about the MTX side effects? Any suggestions to make them better?

Hope the increased dose of amitriptyline works soon :ghug:.
 
kimmidwife

kimmidwife

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.
 
A

awmom

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.
 
kimmidwife

kimmidwife

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?
 
Tesscorm

Tesscorm

Moderator
Staff member
Poor Caitlyn! I don't have any ideas but just sending hugs... she (and you) have been suffering through this for too, too long! :ghug:
 
pdx

pdx

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?
 
Maya142

Maya142

Moderator
Staff member
Sending big HUGS kim. Could her stomach pain be related to the gastroparesis? Since it's after eating and drinking?

Will be thinking of both you and Caitlyn :ghug:
 
pdx

pdx

Oh no. I hope that she's feeling better soon. And hopefully the entyvio this week will help too.
 
A

awmom

Oh no Kim! So sorry to hear, and hope they figure out what is causing this soon!!!! I hope they are able to give Caitlyn some relief ASAP! Sending hugs.
 
kimmidwife

kimmidwife

Finally have a chance to update. Caitlyn is admitted and they are doing upper and lower scopes tomorrow. They want to see if the can find the cause of the pain and also evaluate if the entyvio is doing anything for her.
 
C

crohnsinct

Well-known member
Oh Kim! Sending a virtual hug just doesn't seem like enough! So sorry you are finding yourself in this place again. Really hope the scopes provide clear answers and not more questions.
 
A

awmom

Glad they are getting the scopes done soon! Hopefully they will provide answers so you can move on to a solution.
 
kimmidwife

kimmidwife

Her intestines did not look bad except for the scar tissue around where her resection was. He said that area was extremely red and angry.
 
kimmidwife

kimmidwife

Crohnsinstinct,
He wants to continue her on the entocort which we started last week and then we are going to every four weeks for the entyvio. Today hopefully she will have it done.
 
Maya142

Maya142

Moderator
Staff member
Oh no, poor Caitlyn!! How old is she?

:birthday2: Hope she has a fabulous year and goes into remission!
 
pdx

pdx

Sorry that she has to go through all this on her birthday! Please wish her a happy birthday, and hopefully she'll be able to have a delayed celebration at home once she's feeling better.
 
kimmidwife

kimmidwife

Aw mom,
The pain seems a little better.
More news this morning,
Her stool cultures are positive for C Diff.
First time we are dealing with this. They want to give her vancomycin for it. They also are holding her entyvio for at least a week because of this.
 
Maya142

Maya142

Moderator
Staff member
Sending hugs - M took Vancomycin for CDiff and it made a big difference to her pain/diarrhea. It took about 6 days to work I think.

No wonder Caitlyn feels so awful! I hope it helps quickly!
 
A

awmom

Oh no!!! If it's not one thing it's another! I hope the abx work fast and it makes a huge difference in how she feels. I know when N had CDiff he felt awful, but we thought it was because he was just 10 days post surgery. The antibiotics should work fast. I wonder if that is the reason that resection area looked so irritated. Sending healing thoughts.
 
kimmidwife

kimmidwife

Caitlyn's doctor did not tell us whether to hold the methotrexate because of the Cdiff. They finally returned my call, I have been calling si de has got home Friday and said yes hold the methotrexate. I am annoyed it took them so long to call me back.
 
A

awmom

Grrrr.....I was just talking with a friend about how much easier it is for people that don't think beyond what their medical practitioners order. But so many mistakes or oversights can occur, that how can we not! I hope Caitlyn is feeling better by now.
 
kimmidwife

kimmidwife

She seems to be feeling a bit better and we have a clarified plan in place. They want to retest her stool this week on Friday. If she is negative for the Cdiff then she will get her entyvio next week.she will stay on the vancomycin another week. Also if the Cdiff is negative she can have the methotrexate next week as well. They want her to stay on the prednisone at 30 mgs until after the next entyvio and then she can start weaning it down.
 
A

awmom

Glad she is feeling somewhat better.....hopefully soon she will be feeling MUCH better. Did they ever do the fecal cal test? Do you have any biopsy reports from the scopes?
 
Tesscorm

Tesscorm

Moderator
Staff member
Poor C, but hopefully the cdiff is the cause of her pain and it will soon be better! Glad she's starting to improve.

And, happy belated birthday to her! I hope this year brings her lasting relief and remission!!! :ghug:
 
kimmidwife

kimmidwife

Carolinalaska,
She always has loose stool since her resection so it is hard to tell if it was different. She did have blood though which she has not had son a while. Interestingly every time I have heard of other kids having Cdiff everyone always talked about the stool being unusually strong I odor. Hers did not have that.
Anyway dropped off the retest so waiting to hear.
 
kimmidwife

kimmidwife

cDifff recheck is negative!!!!!!
Infusion is on for either tomorrow or Thursday dependi g on when they can get her scheduled!
 
A

awmom

So glad.......now she can start her meds and get back on track and back to feeling well!
Hope that pain was transient!!! We don't want her to have any more pain!!!!!!
 
kimmidwife

kimmidwife

Been a busy few weeks for Caitlyn. We ended up waiting on the entyvio until she came back from her trip to New York. She and a group of camp friends went to New York comicon. I will try to get her to post a picture of her in her costume. She was Madoca Kaname from an anime show, Puella Madoca Magica. Then she came home and had her entyvio, first time no headache and now she is off visiting our oldest son and his fiancé. She is having some stomach pain and is a bit moody from the prednisone but otherwise doing okay.
 
S

steffers27

I'm afraid you need to take a step back here, you may still feel like she needs your guidance but growing up with an illness is something you can't understand unless you've been through it. How can she make the right decision if there are always people standing over her shoulder telling her what to do. At the end of the day, it is her choice and you will eventually have to accept that. A tug of war between you to will only add to her stress and to her symptoms. Sometimes...i'm afraid mummy does not know best, for example; my mum, believing she was right pushed me into drinking lots of pure water as she was afraid of me getting de-hydrated...but I have a high output stoma and the water was counter productive flushing out all my electrolites. Loosen the grip a little and you will both see things more clearly. Be careful with steroids I'm paying the price for them now.
 
Sascot

Sascot

Glad she is doing okay just now. Great that she made it to comicon! Amy made to Comicon in Glasgow and had a ball she was dressed in her Attack on Titan uniform
 
kimmidwife

kimmidwife

Sascot,
Caitlyn loves attack on Titan!!!! I didn't know they had comicons out of the USA. I am totally going to tell Caitlyn (except maybe I shouldn't because then she is going to want to go to comicon there, she made us drive to Dallas for one last year, 19 hours of driving)! That is great!!!!
 
Sascot

Sascot

Believe me the Glasgow one won't be worth going to but if they had one in London, that would be the biggest in the UK. I bought Amy the harnesses that go with the costume - it's still in the bag! I'm sure there were at least 20 separate belts and no instructions, lol
 
kimmidwife

kimmidwife

Sascot,
Caitlyn has it too! It took her at least ten minutes to get it on the first time! She and Caitlyn should talk. I am going to PM you.
 
kimmidwife

kimmidwife

We took all three girls to the GI doc this week.
For Caitlyn he is taking her off the methotrexate. The entyvio is going to be every four weeks for a while to see if we can heal that area by the anastomoses. And she is weaning the prednisone. For daughter number two he is still trying to get records to see what she had done at the other doctor.meanwhile he is starting her on this new powder for IBD that he says has been a miracle for a lot of kids. (I can't remember the name) and for the youngest daughter he ordered some tests.
 
C

crohnsinct

Well-known member
Would be curious to know what this powder is and why he is prescribing an IBD drug before he even knows if it is IBD. Won't that affect any potential testing he wants to do?

I hope those records get there fast and that you get solid answers for your other daughter.

Also hope Caitlyn does well with the reductions. Do you feel confident that she is in a good enough place to start reducing and dropping meds?
 
kimmidwife

kimmidwife

Carolin,
I can't remember the name. We should hopefully be picking it up from the pharmacy in the next day or so. Had to wait for insurance approval. Then i will let you know.
 
kimmidwife

kimmidwife

The drug for Daughter number two is still not approved! Ugh!
Anyway it has been a crazy week. We decided to try and enroll Caitlyn to do some classes at the local college. It is called dual enrollment. We figured it ought be a good way to get her used to it. But of course we found out the deadline is today so we were running like chickens to get it all done. she still has to take an entrance exam and then hopefully she will be accepted. I am nervous about it but I think it will be a good experience for her.
She also again had some blood in her stool but is getting the entyvio next week so I am hopeful this will resolve.
 
Sascot

Sascot

Frustrating about the meds not being approved yet! Hope the college exam, etc goes well. Exciting for her.
 
kimmidwife

kimmidwife

Caitlyn woke up in severe pain this morning. She is back in the hospital. It might be a recurrence of the Cdiff. We will know more tomorrow.
 
Maya142

Maya142

Moderator
Staff member
Sending big HUGS and thinking of you both. Poor Caitlyn, she really deserves a break :ghug:.
 
pdx

pdx

So sorry to hear this. I hope they figure out what's going on, and that she's feeling better soon.
 
A

awmom

Oh no! I'm so sorry to hear that!!! I hope they find out what is going on soon. It seems like she has had intermittent pain for a bit no? Did you ever get the results of the fecal cal test? This is a stressful time for near graduating kids, but adding CD to the mix sure takes it to another level! Sending warm thoughts to you both.
 
kimmidwife

kimmidwife

She has not been able to poop so we still don't know if this is a Cdiff recurrence. They gave her miralax. Hoping it makes her go. Meanwhile she continues to have severe pain that is the one down side to being on low dose naltrexone you have to wait for it to get out of your system for 48-72 hours until narcotics work again. 😔
 
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