# Growing up, transitioning to adulthood and dealing with crohns



## kimmidwife (Sep 11, 2015)

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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## Maya142 (Sep 11, 2015)

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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## crohnsinct (Sep 11, 2015)

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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## Maya142 (Sep 11, 2015)

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.


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## Lady Organic (Sep 11, 2015)

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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## Pilgrim (Sep 11, 2015)

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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## Sascot (Sep 12, 2015)

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


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## awmom (Sep 12, 2015)

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


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## kimmidwife (Sep 12, 2015)

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.


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## Maya142 (Sep 12, 2015)

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


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## Lady Organic (Sep 12, 2015)

is she on methotrexate pills or injections?


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## kimmidwife (Sep 13, 2015)

Lady organic,
She is on the shot and hates it. She hates needles.


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## Maya142 (Sep 13, 2015)

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


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## kimmidwife (Sep 13, 2015)

Maya,
That is not a bad idea. I am going to look into it.


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## crohnsinct (Sep 13, 2015)

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.


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## my little penguin (Sep 13, 2015)

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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## Maya142 (Sep 13, 2015)

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.


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## Maya142 (Sep 13, 2015)

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!


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## Tesscorm (Sep 14, 2015)

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:


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## Clash (Sep 14, 2015)

> 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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## kimmidwife (Sep 18, 2015)

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.


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## Mehita (Sep 18, 2015)

Is that a typical jump for Entyvio? Not six?


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## Maya142 (Sep 18, 2015)

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

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


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## Sascot (Sep 19, 2015)

Glad the appointment went well. Hope the increase dose helps.


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## kimmidwife (Sep 20, 2015)

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.


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## awmom (Sep 20, 2015)

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.


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## kimmidwife (Sep 21, 2015)

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?


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## Tesscorm (Sep 21, 2015)

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:


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## kimmidwife (Sep 21, 2015)

I know Tess, I feel like she is never going to be in remission.


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## pdx (Sep 21, 2015)

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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## Maya142 (Sep 21, 2015)

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:


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## Lady Organic (Sep 21, 2015)

Im thinking maybe the small bowel, which is above the ombilicus...


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## kimmidwife (Sep 21, 2015)

PDX,
Yes it would be very soon.


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## kimmidwife (Sep 22, 2015)

PDX,
Probably this week or next would be the next one


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## kimmidwife (Sep 22, 2015)

Pain is worse. Going to the ER. 
They scheduled the entyvio for Thursday.


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## Maya142 (Sep 22, 2015)

Really sorry to hear Kim. Hope they can get the pain under control quickly :ghug:


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## pdx (Sep 22, 2015)

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


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## awmom (Sep 22, 2015)

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.


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## kimmidwife (Sep 23, 2015)

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.


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## crohnsinct (Sep 23, 2015)

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.


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## pdx (Sep 23, 2015)

Really hope that the scopes give you answers, and that Caitlyn isn't in too much pain.


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## awmom (Sep 23, 2015)

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


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## Maya142 (Sep 23, 2015)

Sending so much good luck - hope the scopes give you some answers!


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## Optimistic (Sep 23, 2015)

Hope you can both get some rest tonight.


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## my little penguin (Sep 23, 2015)

Fingers crossed for you and her


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## Clash (Sep 24, 2015)

Hoping they can find the issue and resolve it quickly! Hugs!


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## Sascot (Sep 24, 2015)

So sorry to hear that! Really hope you get some answers!! Thinking of you both


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## kimmidwife (Sep 24, 2015)

Caitlyn is in the procedure room. Waiting to hear.


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## kimmidwife (Sep 24, 2015)

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.


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## crohnsinct (Sep 24, 2015)

Did he happen to say what that meant?  Did he have a plan?


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## kimmidwife (Sep 24, 2015)

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.


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## kimmidwife (Sep 24, 2015)

I totally forgot to mention, it's Caitlyn's birthday today! What a present scopes for her birthday!


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## Maya142 (Sep 24, 2015)

Oh no, poor Caitlyn!! How old is she? 

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


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## pdx (Sep 24, 2015)

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.


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## awmom (Sep 25, 2015)

Awwwww....Happy Birthday to Caitlyn!!!!  Are her symptoms/pain any better?


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## Sascot (Sep 25, 2015)

What a shame, hope the meds start to do the trick! Happy Birthday!


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## kimmidwife (Sep 25, 2015)

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.


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## Maya142 (Sep 25, 2015)

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!


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## Sascot (Sep 25, 2015)

Not great news but maybe causing some of the pain. Hopefully the vancomycin will work quickly


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## crohnsinct (Sep 25, 2015)

CDIFF!  ARGH!  But hopefully that is the nice easy answer to the pain and the antibiotics help fast!


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## awmom (Sep 25, 2015)

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.


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## kimmidwife (Sep 29, 2015)

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.


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## crohnsinct (Sep 30, 2015)

....and that YOU had to think of it!


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## awmom (Sep 30, 2015)

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.


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## kimmidwife (Sep 30, 2015)

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.


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## awmom (Oct 1, 2015)

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?


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## kimmidwife (Oct 1, 2015)

Aw mom,
They did the fecal calp. They did biopsies but no results yet.


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## Farmwife (Oct 1, 2015)

Just thought I peek in here. I've been thinking about you guys.
Sorry know advice, just hugs!:ghug:


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## Tesscorm (Oct 3, 2015)

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:


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## CarolinAlaska (Oct 3, 2015)

Hi Kim, how is Caitlyn?  I hope she is moving forward now.  Was she having a bunch of diarrhea with her c.diff?


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## kimmidwife (Oct 3, 2015)

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.


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## kimmidwife (Oct 6, 2015)

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


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## Maya142 (Oct 6, 2015)

:dusty::dusty:So glad it's negative! Is Caitlyn feeling any better?


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## kimmidwife (Oct 6, 2015)

She has been feeling better unto tonight she started having a weird pain, hoping it is just a strange gas pain


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## CarolinAlaska (Oct 7, 2015)

kimmidwife said:


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


Wonderful news!  Celebrating with you both!


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## awmom (Oct 7, 2015)

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!!!!!!


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## kimmidwife (Oct 7, 2015)

Awmom,
It was thankfully! She is having a good day today!


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## kimmidwife (Oct 16, 2015)

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.


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## steffers27 (Oct 16, 2015)

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.


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## Sascot (Oct 17, 2015)

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


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## kimmidwife (Oct 17, 2015)

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!!!!


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## CarolinAlaska (Oct 18, 2015)

Sounds like things are evening out a bit and that she gets to have a life too.  I'm glad things are going well.


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## Sascot (Oct 18, 2015)

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


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## kimmidwife (Oct 18, 2015)

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.


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## kimmidwife (Oct 23, 2015)

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.


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## crohnsinct (Oct 23, 2015)

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?


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## Sascot (Oct 23, 2015)

Sounds like a reasonable visit. Hope things go okay with meds and tests


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## kimmidwife (Oct 28, 2015)

Crohnsinstinct,
It is an IBS drug not IBD.
I hope so too. Fingers crossed!


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## CarolinAlaska (Oct 28, 2015)

I'm, can you let me know what this IBS med is when you get a chance?


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## kimmidwife (Oct 28, 2015)

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.


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## kimmidwife (Nov 6, 2015)

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.


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## Sascot (Nov 6, 2015)

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


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## ronroush7 (Nov 6, 2015)

Wishing the best for her.

 2


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## kimmidwife (Nov 9, 2015)

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.


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## ronroush7 (Nov 9, 2015)

Support and prayers.


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## Maya142 (Nov 9, 2015)

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


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## pdx (Nov 9, 2015)

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


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## Sascot (Nov 10, 2015)

Thinking of you both!


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## awmom (Nov 10, 2015)

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.


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## kimmidwife (Nov 10, 2015)

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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## DanceMom (Nov 10, 2015)

How are things today?


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## kimmidwife (Nov 10, 2015)

Dancemom,
I guess we were writing at the same time


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## Maya142 (Nov 10, 2015)

I'm confused is Caitlyn on LDN and Entyvio and MTX?

M actually refused to try LDN because it stops narcotics from working and she does need pain meds often.

I hope they figure out what's going on with Caitlyn soon and that they are able to get her pain under control quickly.


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## my little penguin (Nov 10, 2015)

^^^^ yeah that 
I thought she was on elavil for pain as well as entyvio and mtx plus weaning Pred


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## kimmidwife (Nov 10, 2015)

Maya and MLP,
Yes she is on all those. They took her off methotrexate two weeks ago. We just heard they saw something on her X-ray. A shadow near her kidney. So they are thinking possible kidney stone. I think I am going to discuss stopping the LDN with the doctor. The thing I like about the LDN though is it boosts the immune system and when she is on it she rarely gets colds or sick and if she does get them they go away very quickly.


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## ronroush7 (Nov 10, 2015)

Hoping and praying for the best.


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## Sascot (Nov 10, 2015)

Hoping it is something "simple" like a kidney stone that will go away soon. Really painful poor girl! Fingers crossed they can get the pain under control


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## Maya142 (Nov 10, 2015)

Oh poor Caitlyn!! Kidney stones are miserable. I hope the pain meds kick in and she feels better SOON.


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## Optimistic (Nov 10, 2015)

Hoping the Drs can figure this out and get some relief for Caitlin.


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## ronroush7 (Nov 10, 2015)

Yes


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## kimmidwife (Nov 10, 2015)

No results still on the US. She finally pooped so hopefully we can get the results of the Cdiff tomorrow. Pain meds still not really working.


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## Clash (Nov 11, 2015)

Im so sorry she is still in pain. I hope they can find something to help relive it soon!


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## Mehita (Nov 11, 2015)

Did the BM bring any pain relief? Your poor girl. Tell her we're all rooting for her! I hope she gets some relief soon.


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## kimmidwife (Nov 11, 2015)

Mehita,
It did not help. She is still sleeping so I am hoping the dilaudid is finally working.


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## ronroush7 (Nov 11, 2015)

Hoping the best.


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## CarolinAlaska (Nov 11, 2015)

Kim, that's awful.  I'm glad she finally got some rest.  Any word on the c difficile?


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## Maya142 (Nov 11, 2015)

Your poor girl! I hope she's feeling better now.


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## kimmidwife (Nov 11, 2015)

Hi All,
So here is the latest, the c diff was negative surprisingly. The Gyn Doctor just came after we have been waiting all day for him and he said she has a 3 cm ovarian cyst that is not ruptured with a small amount of free fluid around it(this is very common) and he highly doubts this is the cause of her pain. We are stumped. Caitlyn has been miserable all day and insists they send her home. We are waiting for the GI Doctor to come. Even if they decide they want to do an MRI or something else we figure we can bring her back and do it outpatient tomorrow. I can't stand to see her cry anymore.


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## kimmidwife (Nov 11, 2015)

Also she does have a small kidney stone but it is in a place where it should not hurt at the moment and is probably just an incidental finding.


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## Maya142 (Nov 11, 2015)

Oh poor Caitlyn! Are they giving her IV pain meds? Anything that'll give her some relief? I would try and get her to stay - it doesn't sound like she can be at home right now (but I know how stubborn teenagers are!). I know they did scopes recently but it sounds like an MRI is a good idea.

Have they tried a TENS unit? Or switching the Elavil to something else? 

M also had an ovarian cyst but they didn't think it was causing pain either. Sending hugs!!


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## my little penguin (Nov 11, 2015)

Sometimes it's better for the docs to observe to figure things out 
Has behavioral medicine stopped by to help her cope with the pain using non medicine techniques ( used this for DS and pain from injections of humira ) made a huge difference once he felt like he was in control


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## kimmidwife (Nov 11, 2015)

Thanks Maya. I just don't know what to do anymore. I am so frustrated. She never gets a break!


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## Maya142 (Nov 11, 2015)

Sending big hugs. I wish sometime thing just worked for her - seems like Entyvio just takes forever . Will be thinking of both of you tonight :ghug:. 

Have they had pain management or the inpatient pain team come see her? They almost always visit M when she's in the hospital and that way if one pain med is causing trouble, they can brainstorm and come up with something else.

When M had her GJ tube surgery, IV Dilaudid made her very dizzy and knocked her out for hours, so they were able to switch her to Morphine. She's been on many opioids and some work better than others for her. I absolutely hate to have her on pain meds, but I hate to see her cry and writhe in pain all day too. I really really hope they can find something that helps her.


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## kimmidwife (Nov 11, 2015)

I know Maya. No they did not have the pain team see her. I don't even know if they have one there!
Anyway they are discharging her home. She is going to go for her entyvio tomorrow and then we will see what happens.


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## CarolinAlaska (Nov 11, 2015)

As, Kim, it all sounds so frustrating!  Has the pain resolved at all?  What DO they feel it is?


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## Optimistic (Nov 11, 2015)

I hope you can both get some rest tomorrow and that tomorrow brings both some pain relief and answers.


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## awmom (Nov 12, 2015)

Your poor girl!  It's just too much.  It is so trying when they cannot find the source of the problem because then it is difficult to feel hope.  Is there a plan as far as more testing? MRI's?  There has to be SOMETHING that is causing all the pain!!  Do you know what the time frame for determining Entyvio effectiveness?  I hope Caitlyn feels a little better being at home and that they get to the bottom of this soon!!


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## crohnsinct (Nov 12, 2015)

Kim:  Here is a video on Entyvio.  Take home point is that for CD it takes quite a while to induce remission BUT once there it is a good maintenance drug.  For this reason the doc in the video suggests steroids as a bridge therapy. 

Did the docs in the hospital run an FC test or any other testing to check the more obvious IBD reasons for her pain?  Seems that would be the first thing to check in an IBD patient presenting with abdo pain.  But I'm just a mom so what do I know? 

http://www.youtube.com/embed/PUBxVFxCEqM


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## kimmidwife (Nov 12, 2015)

Crohnsinstinct, they were supposed to do a fecal calp. I hope they did it. Meanwhile they let her home late last night and this morning she is back having the entyvio.
MLP,
We have done that on the past may have to do it again.
Still don't know what we are doing about the pain.


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## Maya142 (Nov 12, 2015)

Does Caitlyn have a pain management Doctor? If she does, I would let him know that she is in severe pain immediately (and that she was admitted for it). He can probably figure out something for the interim while they work on finding what is causing the pain.


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## Sascot (Nov 12, 2015)

Poor girl. Just because they think the cyst or stone "shouldn't be causing pain" doesn't mean they aren't. When Amy got her appendix removed they only found mild inflammation that shouldn't cause symptoms but once it was gone so was the pain. So sorry they haven't managed to help. 
I am trying a pain patch called Actipatch. Don't know if you get them in America. It's like a miniature tens type unit. Amy says it helps her a bit. I could always send one if you wanted


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## kimmidwife (Nov 12, 2015)

Maya,
We saw him only once he is so far away. I need to look for a new one for her.  it is really weird but she woke up in no pain at all this morning except for this weird headache she has had all week long that didn't want to go away. I can't figure it out. We did figure out one mystery though,  she was acting very strange in the hospital. She kept crying and was acting odd. We found out they had given her Ativan without telling us. She can't take Ativan. They once gave it to her right after she was diagnosed and it made her hallucinate and made her crazy and it lasted a few days. I was so upset they did that without telling us.


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## Maya142 (Nov 12, 2015)

I think for someone like Caitlyn who has so many issues with pain, a pain management doctor might really help. If she is 18, she can see an adult pain management doctor (adult pain management doctors might be easier to find!).

 My younger daughter sees a pediatric pain management doctor who is wonderful and my older daughter sees an adult pain management doctor who is also wonderful! We've found that pain management for adults is focused more on medications but is still incredibly helpful. M sees her pain management doctor every 4-5 weeks.

Remind me, besides Elavil has she tried any other meds for pain? Lyrica? Gabapentin? Cymbalta? Savella? Effexor? There are a whole bunch! M has tried Gabapentin and Nortriptyline (which is like Elavil) and is now starting Lyrica. S has been on Cymbalta and Elavil. 

I'm SO SO glad she's feeling better. I hope it continues!


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## kimmidwife (Nov 12, 2015)

Maya,
I am going to look for a new one here locally now that she is 18. She has tried gabapentin and ellavil.


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## kimmidwife (Nov 13, 2015)

Caitlyn is feeling much better this morning. Both headache and abdominal pain are gone. I am wondering is there any way the headache and abdominal pain are related in some way and were some sort of abdominal migraine?


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## my little penguin (Nov 13, 2015)

Yep abdominal migraine


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## awmom (Nov 13, 2015)

Yup, N had migraines since he was about 4 years old. Diagnosed with CD at age 14.  Once the CD was brought under control he stopped getting migraines!  I'm so glad she is feeling better!!


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## kimmidwife (Nov 13, 2015)

MLP,
Everything I am reading says they don't get both a headache and abdominal pain together. Trying to figure it out.


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## my little penguin (Nov 13, 2015)

Neuro would be the one to handle them
Also get a better grip on how pain should be handled


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## Sascot (Nov 14, 2015)

Pre diagnosis they thought Andrew might have abdominal migraines. They tried Pizotofan for that. Hope her pain stays away now


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## kimmidwife (Nov 14, 2015)

Thanks Sascot,
She is feeling better today, fingers crossed.
MLP,
I am trying to find her a neuro/pain doctor.


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## kimmidwife (Nov 23, 2015)

Today we were supposed to go find out the test results to see if two of our other kids possibly have crohns or if it is probably not crohns and something else. Luckily the appt was cancelled and I get to keep my head in the sand for another week!


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## crohnsinct (Nov 23, 2015)

What tests did they run?


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## my little penguin (Nov 23, 2015)

^^^ yeah that 
Since genetic markers wouldn't be helpful since they have a sibling with crohns 

And I don't know of a simple crohns specific test except a colonoscopy


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## kimmidwife (Nov 23, 2015)

MLP,
They ran a bunch of blood tests and a fecal Calprotectin. The fecal calp. I think is the most accurate of all they ran though I know that can be negative sometimes too. The next step will be colonoscopies for the two of them depending on these results.


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## crohnsinct (Nov 23, 2015)

I agree re Fcp. Do you have a patient portal you can check?  Either at the hospital or lab? How long ago were samples handed in?  I know with t they called me as soon as results came back. No sense calling me in to say high let's scope. Maybe if you were new to all this but second and third time around?.....


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## awmom (Nov 23, 2015)

There is a lot to be said for not knowing!!!!  Are the kids having many issues ?  I imagine the appointment is to discuss treatment plan for the kid's symptoms whether the results are positive or not.  I do hope the results are negative and there that it can be a quick fix!!!


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## kimmidwife (Nov 24, 2015)

CIC,
No patient portal and they never call with results. The tests were done two weeks ago. My older daughter of the two has had a bunch of testing before this and so far all negative but he did a new test on her that has to do with the way the body digests carbohydrates. I had never heard of it before so I am really curious to see how that one comes back. 
http://www.allinahealth.org/CCS/doc/Consumer_Lab/49/150049.htm


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## crohnsinct (Nov 24, 2015)

Bummer!  You are a better woman than me.  My head would have exploded when I got the call about the cancellation and the one week delay!  

Interesting about that other test.  T had something similar done but after dx.  Testing for FODMAP issues.  Maybe if she has FODMAP issues they will test C also and that could be an answer to her issues as well?!  

Either way, I hope the tests give you some answers and clear direction.


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## kimmidwife (Nov 24, 2015)

CIC,
I have no clue. I guess we will find out. Keeping my head buried in the sand for the rest of the week!


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## kimmidwife (Dec 1, 2015)

My daughter is having a new symptom, attacks of severe random abdominal pain. They only last a little while and then go away. Anyone else's kids have this happen?
It started about three weeks ago. The first time it actually lasted several days and she was hospitalized for it but all the labs they did were normal and then they sent her home without any further testing. Since then it has come and gone lasting an hour at most.
I don't know what to make of it. Today she keeps getting it on and off. It is very severe when it comes.


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## my little penguin (Dec 1, 2015)

What is she eating??
Doesn't she have gastroparesis 
That can cause abdominal pain 

Ds abdominal pain was severe and then random
Once we did elimination diet we found triggers and things weren't nearly as random as we thought

His started out of the blue last thanksgiving 
Still working out other causes with GI


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## Maya142 (Dec 1, 2015)

Another thought - partial blockages? Has she had an MRE recently, I can't remember?
Sending HUGS!


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## Sascot (Dec 1, 2015)

Sorry to hear that. Not sure what it is, but when I think of intermittent severe pain I immediately think of something getting 'caught'/stuck on and off. Maybe she has a kidney stone or a little blockage that food gets stuck in for a while till it works through. The only other thing I can think of is a kink in the bowel maybe twisting and straightening on and off


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## CarolinAlaska (Dec 1, 2015)

Jae has been having these too, the first time she ended up in the hospital.  Jae's may be related to her prednisone induced constipation, but she can have alternating constipation and diarrhea and still experience it.


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## Pilgrim (Dec 1, 2015)

Our experience with severe intermittent abdominal pain was pancreatitis.


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## ronroush7 (Dec 1, 2015)

Pilgrim said:


> Our experience with severe intermittent abdominal pain was pancreatitis.


I had pancreatitis five years ago and had to go to the ER.


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## kimmidwife (Dec 1, 2015)

Pilgrim and ronroush,
They would probably detect that with labs right?
All the labs they did were normal. MLP this is different then the gastroparesis pain. Maya and Sascot partial blockage is exactly what I am worrying about.
I called the doctor today asking if they can order an MRE and as is usual for them no call back. That is my biggest gripe with this practice. I really like this doctor I think he is great but his staff is not and I don't know if they don't give him messages or what the story is. When we see him Thursday I am going to say something g again about this. I was really hoping he could order it for tomorrow and we could have the results by the time we saw him Thursday.


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## Maya142 (Dec 1, 2015)

Amylase and Lipase are the labs used to detect Pancreatitis. Those have to be specially ordered, right? They're not part of a CBC or Metabolic Panel.

I hope you can get the MRE done before Thursday. Thinking of you and Caitlyn :ghug:!


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## Optimistic (Dec 2, 2015)

Hoping for no more of those pains. She sounds like a very tough and brave young lady. May Thursday bring some answers!


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## ronroush7 (Dec 2, 2015)

kimmidwife said:


> Pilgrim and ronroush,
> They would probably detect that with labs right?
> All the labs they did were normal. MLP this is different then the gastroparesis pain. Maya and Sascot partial blockage is exactly what I am worrying about.
> I called the doctor today asking if they can order an MRE and as is usual for them no call back. That is my biggest gripe with this practice. I really like this doctor I think he is great but his staff is not and I don't know if they don't give him messages or what the story is. When we see him Thursday I am going to say something g again about this. I was really hoping he could order it for tomorrow and we could have the results by the time we saw him Thursday.


I assume it would be labs.  I went to the ER.


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## awmom (Dec 2, 2015)

N used to have severe pain before his surgery to remove a stricture.  Typically it happened after eating, or before a BM movement.  The pain would only last a few minutes though and usually after he went to the bathroom he was fine.  I'm glad you have an appointment this week.  Hopefully they can figure out what his causing her pain!!


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## kimmidwife (Dec 2, 2015)

They never called but our appt is tomorrow. I a, got g to find out if they did an amylase and lipase in the hospital I think they might have ruled out pancreatitis but I can't remember and then I am going to push for an MRI


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## ronroush7 (Dec 2, 2015)

Best to you.  Keep us updated


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## CarolinAlaska (Dec 3, 2015)

I hope your appt helps figure things out.


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## Sascot (Dec 3, 2015)

Good luck for the appointment!


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## kimmidwife (Dec 3, 2015)

Thanks!


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## Maya142 (Dec 3, 2015)

Thinking of you guys today!


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## kimmidwife (Dec 3, 2015)

It has not been a good day. 
It started out that I got a text from my very close friend( who has been fighting cancer) husband that she is not doing well and is back in the hospital.
Then we had the GI appt. our youngest who is seven probably has Crohn's and our middle child probably has a carbohydrate metabolic disorder. They are both scheduled for colonoscopies next Tuesday. I am guses I should start a new post about this.


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## ronroush7 (Dec 3, 2015)

I  am so sorry.  Prayers and support


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## Sascot (Dec 3, 2015)

Oh no! So sorry to hear that. Thinking of you all


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## Optimistic (Dec 3, 2015)

Kimmidwife,
You are a lot more mature and classy than I am because I would say that is more that "not a good day!"  . I'm very sorry you were hit with bad news times 3 with all the other mess swirling. Enough. 

I guess the thing we can be thankful for is that tests are scheduled quickly. Sigh. I'm sorry. 

Ps. I have suspicions about two of my other children but I just can't deal with that right now. Keep us posted


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## kimmidwife (Dec 25, 2015)

Caitlyn's pain is back. It seems we can't get past two weeks from the infusion.


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## ronroush7 (Dec 25, 2015)

I am sorry.


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## Sascot (Dec 25, 2015)

Really sorry to hear that. Wish things would settle down


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## CarolinAlaska (Dec 25, 2015)

sorry to hear it.


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