# In remission but still having pain on and off?



## kimmidwife (Dec 21, 2012)

Hi all just thought I would ask you wonderful experts. Caitlyn is in remission according to her colonoscopy and biopsies but she is again having pain after eating. It comes and goes. She will be better one week then it comes back again for a week then she is better again. I am wondering if this could be related to scar tissue from her surgery?
Anyway, our family is going to a local convention this weekend for families with sick kids. I am really looking forward to meeting some other local families and the kids meeting other kids who struggle as well. Which should be hopefully be helpful to them and us! So I won't be around that much this weekend but will try to check in now and then


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## Sascot (Dec 21, 2012)

I would imagine that scar tissue could cause some irritation and pulling.  Amy's appendix was attached to her bowel and I wonder if that was a part of her pains - when the bowel moved it pulled the appendix?  Maybe certain movements cause Caitlyn's scars to be stretched.


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## my little penguin (Dec 22, 2012)

She is on Elavil for stomach issues (pain as well)-
maybe a new dose is needed.
Viseral hypersensitivity  is sometimes seen in IBD kids ( or so we were told).
Has she tried a H1/H2 blocker combo for this? Sometimes that works? Tens unit?

What does her GI say?

HUgs


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## TiredofbeingSickandTired (Dec 22, 2012)

I am in remission, but I still have occasional pain if I eat something I shouldn't. For example, my GI told me to avoid foods that are difficult to digest like salads and nuts. I am vegetarian so that is really hard for me so I succumb to the temptation sometimes, which may result in some pain where I have the most scar tissue. Yes, I know I am risking blockage but I love my veggies!

It could also be possible that she may have a food intolerance which is causing her pain. I used to journal what was making me sick, figuring out what was going on by a process of elimination (pun intended) :ysmile: It helped to have that list at GI visits too so I could discuss it with him.


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## kimmidwife (Dec 22, 2012)

Hi all popping in for a few minutes while on a break from the convention. I spoke with Caitlyn's GI yesterday but did not have a chance to post. She called me as we were getting ready to leave for the convention. She thinks the pain may be related to adhesions from her surgery. She definitly does not think she is starting a flare as her biopsies were so good they showed no inflamation and she said there would have at least been a little before if she was beginning a flare. She wants her to try to begin stretching exercises to help break up the adhesions. MLP I was thinking about the visceral hypersensitivity like you said and you are right it might be time into increase the amitryptalline. I also will ask at our next wisit about the tens unit. Tired of being sick, I like the journal idea but am not sure if I can get her to do it. She is being a noncooperative teenager these days. I started her on a multivitamin and a probiotic and have been having to fight to get her to take them. ( had to threaten to cancel her voice lessons, she has an amazing voice and I started getting her voice lessons.) she finally agreed to take them.


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## Tesscorm (Dec 22, 2012)

Hope the stretching and medication can help reduce her pain!!  So frustrating to finally be in remission after all the trials and errors and still be dealing with pain! :ymad:

Hope you're all enjoying the convention!


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## Twiggy930 (Dec 22, 2012)

We have the same situation around here.  Back in September we started my son on a probiotic and high dose vitamin B2 (riboflavin) and since then the frequency of the pain has gradually been reducing.  The vitamin B2 was for possible abdominal migraines as that was one theory as to the cause of the pain.  We also cut out gluten and lactose for a while but I'm not so sure that helped.

We are happily down to about 2 bad days every 2 weeks.  I think the probiotic helped my son a lot but it took about 3 or 4 weeks to really see the improvement.

I hope Caitlyn's pain reduces soon.  It is so heartbreaking when they are in pain so often.


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## Catherine (Dec 23, 2012)

I second vitamin B,  I put  on b multi with at least 50mg of b6  amd my pain is much decreased.


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## izzi'smom (Dec 23, 2012)

While I can't bring myself to use the "r" word (fear of jinxing a good thing), Izz still has pain, occasional urgency and d. (Although her scopes showed mild chronic inflammation). It's nothing close to what she WAS experiencing, though, so I am good with it. 
Hoping the GI's suggestions do the trick!


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## kimmidwife (Dec 23, 2012)

Ok that is weird the post above Catherine has my name but was not posted by me. How did that happen?


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## Farmwife (Dec 23, 2012)

David where are you!!! Or even DustyKat.

I thought the was odd Kim!:shifty:


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## kimmidwife (Dec 23, 2012)

I just pm'ed David we will see what he can figure out. Hope someone didn't hack me.


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## Clash (Dec 23, 2012)

I think it was twiggy that posted it, I saw there was a post from her but when I clicked on the thread I could only find the one with your name kimmiedwife.


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## kimmidwife (Dec 23, 2012)

That is weird hmm maybe just a computer glitch.


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## Twiggy930 (Dec 23, 2012)

That was my post!!!  I swear I'm not a hacker, I can barely turn the damn computer on!!!  This is the second time this has happened to me, I once became Dusty but sadly didn't acquire all of her knowledge.  :yrolleyes:


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## kimmidwife (Dec 23, 2012)

Well that is a relief at least I know I wasn't hacked!


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## upsetmom (Dec 23, 2012)

Clash said:


> I think it was twiggy that posted it, I saw there was a post from her but when I clicked on the thread I could only find the one with your name kimmiedwife.


I had the same problem...


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## Dexky (Dec 23, 2012)

I'm definitely no expert but I'd think with pain after eating, and all else looking good, a food journal would be a good place to start.  We've had EJ doing gluten free and vastly reduced red meat since his last scopes early last spring.  There were eosonophils in his gut though he was negative for all food allergies.  I can't really say it has helped but it hasn't hurt either.

We've been lucky with EJ taking supplements.  He can now swallow a whole mouthful of pills at once.  He used to gag on every one!!


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## DustyKat (Dec 23, 2012)

Twiggy930 said:


> That was my post!!!  I swear I'm not a hacker, I can barely turn the damn computer on!!!  This is the second time this has happened to me, I once became Dusty but sadly didn't acquire all of her knowledge.  :yrolleyes:


I remember that! :eek2: Spooky!


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## DustyKat (Dec 23, 2012)

No issues with pain here Kim. I hope you are able to get to the bottom of it and Caitlyn's pain is soon a long forgotten memory. Sending healing thoughts your way! :heart: 

Dusty. xxx


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## kimmidwife (Dec 24, 2012)

Dexky,
I have been trying to get her to do a food journal but she has been resistant to the idea. However I did finally get her to agree to take a probiotic and MVI which she has been resisting until now. We do know that she cannot eat a lot of red meat but a little seems okay. Hot dogs definitly bother her and any deli meat.


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## Sascot (Dec 24, 2012)

Hope the stretching, vitamin and probiotic start to help.  Since she is doing well with no inflammation, it would be great if she could be as pain free as possible.


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## kimmidwife (Dec 30, 2012)

Hi all,
hope everyone is having a good weekend. we were until Caitlyn just told me the past few days she has been having more Bms a day then before.she is having about four per day vs one to two.her pain has been a little better the past few days though.since she has had a bowl resection is it possible that this might be normal? for those that don't know Caitlyn had a piece of her small intestine removed and her ascending colon as well as half her transverse colon.


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## Clash (Dec 30, 2012)

Just wanted to send some support, I have no experience with resections. Could it be all the festivities of the holiday season, maybe? I worried that C might have issues with the lure of all the meals and goodies but (touch wood) all is okay.


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## Susan2 (Dec 30, 2012)

kimmidwife said:


> Dexky,
> I have been trying to get her to do a food journal but she has been resistant to the idea. However I did finally get her to agree to take a probiotic and MVI which she has been resisting until now. We do know that she cannot eat a lot of red meat but a little seems okay. Hot dogs definitly bother her and any deli meat.


I am fine with fresh red meat and fish, but have difficulty with most processed/preserved meats or fish. Unfortunately this even includes things like smoked salmon, which I love. It has to do with the additives that are used, I think.


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## my little penguin (Dec 30, 2012)

Just wanted to a hug ..
I know in normal folks the weird schedule / food can cause issues with the Gi tract .
Add in Ibd things are bound to go a muck.
Does she have an ipad, iPod, or phone or computer ?
Maybe make the food journal fun and less taxing
My fitness pal has an app plus you can do it online free
Make up a few standard meal and items she eats then all she has to do is click. 
Very easy

Or try the my Gi buddy
Or my Ibd app 
Both have sections for food BM pain etc 
Myibd app does not require the web - is not on the web 
But does have a code so no one else can see it
She can even print out stuff for her Gi on PDF s

All can be found in these links

https://itunes.apple.com/us/app/myibd/id444728980?mt=8
http://www.myfitnesspal.com/mobile


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## kimmidwife (Dec 30, 2012)

thanks for the hugs and support. MLP, have tried to get her to use those app but she is a stubborn teen. Susan she also has issues with proceed meats.interesting to hear that someone else does a well.clash we have actually been keeping it veer low key this year so this has not been a problem.


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## Clash (Dec 30, 2012)

Oh how I wish I would've done low key, I think I'm still full from all the holiday festivities!!! I hope it resolves soon!


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## kimmidwife (Dec 31, 2012)

Sorry for the spelling there typing from my phone is always more difficult.


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## DustyKat (Dec 31, 2012)

Do you mean having had a resection that an increase in her bowel motions 
may be normal? 

If so then I would have to say that I think the opposite would be normal, speaking from the remission point of view which I assume is where you are coming from. In our experience the bowel motions were frequent at the outset and although they both use psyllium I do believe that over time there has been some natural take up. So over time the bowel motions have decreased. 

I hope this makes sense!

Dusty. xxx


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## kimmidwife (Dec 31, 2012)

Dusty,
That does make sense to me. I am thinking maybe it is food related. I am going to try to convince her to use the app and keep a diary.


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## DustyKat (Dec 31, 2012)

Good luck Kim. :hug: I well know the fine line you are treading when it comes to teenagers and CD! 

Dusty. xxx


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## kimmidwife (Jan 1, 2013)

Hi all,
Caitlyn now started having back pain ugh! I am thinking maybe she has a kidney infection. The back pain is on both sides in the mid part of the back. Never a dull moment for any of us. I hate this every time I think things are good something happens. She is supposedly in remission but still having stomach pain on and off, increased BMs and now this back pain. I am not sure what to think. Will call the GI in the morning and maybe her pediatrician as well.


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## my little penguin (Jan 1, 2013)

Hope it's an easy fix


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## Sascot (Jan 2, 2013)

Sorry to hear that!  Very frustrating for you and her! Does sound like a kidney infection if it's both sides or maybe it is just sore from something she did over the last couple days?  Trying to keep your bubble intact!


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## DustyKat (Jan 2, 2013)

UGH is right Kim!  

I hope you can get answers from the docs. Good luck! and sending loads of well wishes and healing thoughts your way! :heart:

Dusty. xxx


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## kimmidwife (Jan 2, 2013)

We saw her pediatrician today. She thinks the back pain and some of the stomach pain is musculoskeletal. She has been exercising. But she is concerned about the pain after eating and the increased BMs. She ordered bloodwork and we left a message with the GI to let her know. We will do the bloodwork tomorrow morning. I will keep you posted. Her stomach is hurting again after dinner.


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## my little penguin (Jan 2, 2013)

update when you can


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## Sascot (Jan 3, 2013)

Hope the bloods come back ok and it is just muscles!


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## kimmidwife (Jan 3, 2013)

Forgot to mention one thing. Caitlyn has lost nine pounds since September. So not sure what is going on with her. Supposedly in remission but losing weight and having pain? Doesn't make sense to me.


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## izzi'smom (Jan 3, 2013)

the pain I always assume may be a new normal but the weight loss warrants looking in t o. sorry, Hon


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## upsetmom (Jan 3, 2013)

Could the weight loss be because shes exercising?


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## kimmidwife (Jan 3, 2013)

Upset mom, she is not exercising that much. If anything I worry that it is muscle loss because she is home schooling now she is moving around less. I have been trying to find her a dance class or something to get her moving. Anyway she did the blood work today but after we did some shopping and every time she would bend over she said it felt like knives were sticking her in her belly. Then after dinner she ran to the bathroom and said it was pure diarrhea  never a dull moment. I am really confused with what is going on with her.i hope the blood work gives us some answers. The doctor also order a fecal calprotectin so we will hopefully be able to turn that in in the morning.


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## upsetmom (Jan 4, 2013)

I hope you get some answers soon....:ghug:


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## Sascot (Jan 4, 2013)

Hope it settles down soon and the pain goes away on it's own.  Maybe just a tummy bug? Have you had any luck noticing anything with the food diary?


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## kimmidwife (Jan 4, 2013)

She has not yet started the food diary but I am hoping she will today. She definitly is running to the bathroom as soon as she eats anything  waiting to see what the blood work does.


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## kimmidwife (Jan 4, 2013)

Just want to wish everyone a good and peaceful weekend. We have a rule no electronics Friday night it is family time! So ttyl!


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## Dexky (Jan 4, 2013)

That's a great rule!!


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## kimmidwife (Jan 5, 2013)

Thanks Dexky 
Caitlyn is feeling better today. I am hoping maybe all this was some sort of virus or something. Keeping my fingers triple crossed. She talked me into going to see Les Miserables for the second time tonight. What an incredible movie! We loved it just as much the second time. If you like musicals I highly recommend it.


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## Kev (Jan 6, 2013)

Unfortunately, LDN has no effect whatsoever on accumulated scar tissue. The pain from it is not a constant... it waxes and wanes depending on any number of factors that seem to have no logic or clue.  I have extensive scarring from my Crohns, but I also have loads of it in my back from a ms-adventure of my youth... so I have experienced the fluctuation of scar tissue pain long before Crohns ever reared its ugly head.  As such, I was prepared for my Crohns scar tissue pain to increase/decrease AND not depend on my disease levels. In my personal experience, it is not a barometer of the disease itself (if one is in remission or maintenance situation). It is just a nuisance, not an indication the condition is deteriorating.  One thing I have learned, and it took years to acquire this knowledge (the explanation is too long to go into, even for me) that my scar tissue... especially in my back, is susceptible to... inflammation.. (not Crohns) that can cause it to skyrocket.  I don't think the doctors really have an explanation for this.
For years, my back would give me grief, and docs would examine, X-ray it, and never find anything... they couldn't even locate the scarring.  Then, one time, it became very inflamed, so much so that it presented as an easily seen 'lump' (size of my fist) and voila, the 'doctors' saw it (and I think for the 1st time believed it was real and not some figment of my imagination).  All I got from that experience was validation/confirmation it was real.  No cure. No treatment.  However, years later (still pre-Crohns) I did discover that for 'back' flares, I could see a chiropractor, and they could help. Really help. Fast! And, a chiropractor warned me (again, pre-Crohns) that something was brewing in my GI tract.  I wish I had taken her warning to heart.  I don't know if this is any help, or even any consolation, but.. based on my experiences, I don't see pain level changes as a warning sign that my disease is returning/rebounding, just as a daily part of my life.


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## Dexky (Jan 6, 2013)

kimmidwife said:


> If you like musicals I highly recommend it.


Uhm, yeah….no!  Glad C's feelin' up to it though!

Kev, just curious, what did the chiro do to alleviate inflammation pain?


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## DustyKat (Jan 7, 2013)

Any news on the tests Kim? 

Thinking go you, :heart: 

Dusty. xxx


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## kimmidwife (Jan 8, 2013)

No news yet on the tests. Sorry I was not on yesterday I had a crazy thing happen to me. I woke up at three in the morning with a strange stomach pain on the right side. ( of course immediately thinking appendicitis) it became better so I took my other daughter to her appt an hour away. On the way home it came back. We went to lunch and I could not eat and I told her we had to leave. In the car I started throwing up. ( thank goodness I always keep extra plastic bags in the car) I drove to the ER and spent six hours there. They did blood work and a CT scan but did not find anything. They told me maybe it is a kidney stone and we just can't see it. The pain was better until about an hour ago it started again but it moved and is now higher up. Now I am thinking maybe gall bladder? But they did not see anything on the CT scan and I think they would have seen that. I am puzzled.
Caitlyn is having pain and increased BMs again. I am waiting to hear from the GI.


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## my little penguin (Jan 8, 2013)

Second the gallbladder thought .
Hope that it gets better soon.


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## Farmwife (Jan 8, 2013)

Had my gallbladder removed because of stones with in this year. Very painful!!!!!

Does the pain start at the front and move to the back?


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## Clash (Jan 8, 2013)

Kimmidwife, just dropping in to see if Caitlyn was feeling better and saw that you were having problems!!! I had my gallbladder removed as well but not because of gallstones. I kept having attacks and they finally did a HIDA scan and it showed my bile output percentage was low and they thought this was the reason for my attacks so they removed it. Hope you get some relief soon!! Also, I hope Caitlyn starts feeling better soon!


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## kimmidwife (Jan 8, 2013)

Hi all,
Thank goodness my pain is a little better. Maybe I will ask about one of those HIDA scans. They did not see any obvious gallstones. I am definitly brewing a kidney stone on the other side though. I feel it starting to twinge.
Anyway back to caitlyn. Her labs came back 100% normal! The fecal calprotectin came back as well which I was shocked because last time it took two weeks to come back. The FC was a 65 totally with in normal. Her hgb and hct were perfect 13.1 and 38.0 her crp was less then 0.10. Everything was great. So I spoke with the GI ( told her about my pain to and to see what she recommends) anyway she said that people without a large intestine or with only half a large intestine like in Caitlyn's case are at risk for overgrowth of bad bacteria. Your large intestine is where the gut normally grows the good flora and fauna. She said it is very important to have her taking a good probiotic. She wants her to start that immediately and to start on Imodium to slow her BMs down. She said let us give it two weeks and see if there is improvement. If there is none she wants to do a pill camera to see if there is something we are missing in this picture. I really like this doctor. She is proactive but not aggressively so.


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## Brian'sMom (Jan 8, 2013)

Kim, I hope its just food related. I agree with you on the deli meat thing. In our world, everything will be going great...a trip to subway and some bologna or salami... Brian will have almost instant stomach ache and blood later in stool. GI says it almost sounds like an allergy to it since its so immediate and always the same result. Hence, he doesn't ever eat it anymore.


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## DustyKat (Jan 9, 2013)

Oh my, sorry to hear about your illness Kim...:hug: I hope you are able to find solid answers for what is going on. Good luck!

Good to hear that Caitlyn's labs were normal and the GI surely does sound like she is well on top of things. Little wonder you like her!  I hope the meds do the trick and kick things back to normal for her. :hug:

Thinking of you all, :heart: 
Dusty. xxx


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## xmdmom (Jan 9, 2013)

Wow, Caitlyn's labs are fabulous, but what's up with the 9 lb weight loss? Are you and your doctor suspecting malabsorption due to SBBO as the cause?  How is his her BMI or  what is her current weight and height?

It's definitely difficult to be watching one's child lose weight! Hope it will be sorted out and that Caitlyn will be gaining weight soon! 

Hope your stomach pain never returns and if it does, it's easily taken care of!


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## Tesscorm (Jan 9, 2013)

Kim, the GI does sound wonderful and on top of things!

If her pain doesn't go away, perhaps it is related to scar tissue (as Kev has suggested).  The food diary would be great but it is hard with teens! :ywow:  

As far as the weight loss, that is worrisome???  Did the doctor have any idea what could be causing it?  I know she couldn't do the exclusive EN but would she be willing to add a shake to her diet every day?

And, sorry to hear about your pain!!!  I hope it was just a fluke!!! :ghug:

(And, again...  it was great to meet you and the kids!!!!!  So nice to put a face to the 'thread' )


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## kimmidwife (Jan 9, 2013)

Tess,
You know I think I am going to try to convince her to at least drink a boost or one of the tastier types of nutrient drinks daily. She is still complaining of the pain. I am really thinking scar tissues as well. I am wondering how the heck I am going to get her to swallow a pill camera if it comes to that I heard they are huge. I may start a thread about that.


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## rmk (Jan 15, 2013)

Hey all, haven't been here for a while, i hope Caitlyn is feeling better. The food diary is great, Tadhg (12) pre-teen with Crohns in remission on methotrexate injections, he had two weeks of pain after Christmas, we thought they may have to add a steroid! He is on a mostly gluten free diet, we try adding little cheats now and again to test the waters but he really suffered after the holidays. he still takes two of the Ensure Plus drinks per day and we encourage him to make a lot of food himself, pasta, pizza rice fish chicken and low gas inducing veg. He's doing well for now but still pain if you touch his stomach (ulcers on his intestinal wall) and constipation. Tadhg had his appendix out a couple of years ago pre diagnosis the gas pains following really caused havoc with his stomach.
I don't know if any of this helps, best wishes to you and Caitlyn,
Rachel


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## kimmidwife (Jan 15, 2013)

Hi Rachel,
Thanks! I have tried and tried to get Caitlyn to follow a healthier diet, maybe even gluten free but right now it is not happening. Stubborn teenager! She still has pain on and off. She is still having the increased BM's. her labs and colonoscopy are perfect so I don't know what to think. Also again we did not get a call back from her doctors office about fitting her in for an appt because the earliest they had was March and the doctor said they wanted to see her sooner. Tomorrow I will call again and hopefully get a call back this time!


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## Jmrogers4 (Jan 15, 2013)

kimmidwife said:


> Stubborn teenager!


Preaching to the choir, I had $4 in my purse of which I just used to bribe Jack to drink a Boost.  He stood over the drink and would gulp some done rinse his mouth out 3 times with water and repeat it all again.  SERIOUSLY it is not that bad!  He's been extremely fatigued and has lost some weight but other wise seems fine so just keeping an eye on him for the time being and trying to get extra nutrients in him.  It's finals this week so I'm hoping it is just too much studying.


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## my little penguin (Jan 15, 2013)

Sorry not trying to laugh but my ds calls boost  a milk shake at this point since he has been drinking pepatmen.
you could do like we did-
first offer elecare- they take one to two sips
and of course make a face:wink:
then E028 splash - more faces
then peptamen or vital jr less of face
and finally boost
by time you get to that
they are begging to only have to drink that one.

Sneaky I know.

Ds still drink peptamen but have you tried a straw or camel back cup since they by pass alot of the taste buds that way????


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## Jmrogers4 (Jan 15, 2013)

Tried the straw, may have to try your way MLP, Elecare huh?.  I don't think I can afford to bribe him every time but I know he needs the extra calories/nutrition.  My husband had to leave the room because he couldn't hold it in (I could hear him laughing in the garage)


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## Dexky (Jan 16, 2013)

We bought a whole case of chocolate Ensure.  EJ doesn't like it, has to cut it with milk just to tolerate it.  We should've never told him it's good for him!  My girls on the other hand go through it like candy at Christmas.  I drank one and can't understand how anyone wouldn't like it.  It tastes like a melted chocolate milkshake!!!  

We need to convince the manufacturers of these drinks to package the stuff with a rabbit on the label!!  Put 'em in the fridge and watch 'em disappear!!


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## Tesscorm (Jan 16, 2013)

LOL!  Aren't picky eaters fun?!?!?

I took some Boost shakes away with us (in place of his NG ingested formula) and was totally expecting Stephen to have the same reaction as Ryan...  rinsing, gagging, etc. :lol:  Surprisingly, he said they were fine.  HOWEVER, he did have an ulterior motive...  he has been trying to 'bulk' up his muscles and has been on a protein kick...  I bought him some of the shakes that had 'extra' protein - that was his 'rabbit on the label'!


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## Clash (Jan 16, 2013)

So, we got a juicer for Christmas. I think I've juiced every veg and fruit combo known to man trying to get something C would tolerate. You would think I was asking him to drink cyanide(I have to admit none of them were that tasty). So one night I find him downstairs, he's juiced a pineapple, poured that juice and a bit of the pulp in the blender with frozen vanilla yogurt, a banana and one of his strawberry ensure!! He finished off the whole blender of that concoction and has been experimenting with the blender since. So the juicer, is getting no use but we have re-discovered the blender in our house!!


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## Tesscorm (Jan 16, 2013)

Good for him!!!  That actually sounds like a pretty good combination!  Was actually thinking this morning of going out to buy one of those Bullets...  they're smaller and I think could be used to just make one shake... and seem even easier to use than a blender???

My husband was talking about buying a juicer but I told him I really don't think it'll get much use at our house!  Hubby will try a few concoctions, Stephen will struggle (with full convulsions) with drinking a drop, will say he doesn't like it, hubby will get angry and say he's being ridiculous, that he didn't even try enough to know how it tastes and that it's not that bad...  and the juicer will subsequently become a dust collector!  :lol:


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## Jmrogers4 (Jan 16, 2013)

Just bought jack a little blender like thing a sports bottle attaches to it mixes up a serving. Its by oster and its just like a little personal blender.
Clash, I think I'll have him try that re
cipe he might actually drink that


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## Clash (Jan 16, 2013)

Tesscorm said:


> My husband was talking about buying a juicer but I told him I really don't think it'll get much use at our house!  Hubby will try a few concoctions, Stephen will struggle (with full convulsions) with drinking a drop, will say he doesn't like it, hubby will get angry and say he's being ridiculous, that he didn't even try enough to know how it tastes and that it's not that bad...  and the juicer will subsequently become a dust collector!  :lol:


This is an exact depiction of how it went!!! I think the funniest part was me trying to get them down along with C to show him they weren't that bad...I'm truly a bad actor!!! I would get tickled at the look I knew I must have on my face as I tried to show a look of YUM!!


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## my little penguin (Jan 16, 2013)

What about levsin prn if its a spasm or cognitive behavioral therapy
??


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## Patricia56 (Jan 16, 2013)

Covered cup is very helpful along with the straw. Prevents them from smelling the odor which is usually the part that is a problem.

Very cold also helpful although this can have a shock effect on stomach and cause pain/stomach upset.

Use same flavor for at least 3 days in a row. Small amount in small sips spread out over day to begin with, gradually working up to full can then more than one can. Process may take more than a couple weeks.

Can try adding or using peppermint or other strong scent like banana to mask the smell of the formula. Use the same stuff you buy at the grocery store to flavor icing for cakes. You could smear it on the top of the cup or add it to the drink.

You can use the formula to make pudding and add it to other foods like cake mixes instead of usual liquids. I think the Nestle medical foods/formula website has a section with recipes and suggestions.

I do not recommend material bribes. If you want to schedule special time together to do something he likes then that is good.


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## Jmrogers4 (Jan 16, 2013)

Yes we have never been in to material bribes but I am nearly at my wits end and money talks to a teenager and special time would be spending it with friends playing xbox or going paintballing. Will try the cake mix flavoring


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## Patricia56 (Jan 16, 2013)

I'm going to respond to you in a separate post rather than hijack this thread.

Teens. Love em to death, eh?


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## jmckinley (Jan 16, 2013)

Dexky said:


> We need to convince the manufacturers of these drinks to package the stuff with a rabbit on the label!!  Put 'em in the fridge and watch 'em disappear!!


Pediasure has some cute animals on the bottle and Boost Kid Essentials comes like a square juice box. Ryan's 15 and he loves the chocolate.


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## kimmidwife (Jan 17, 2013)

Yes all thanks a lot for hijacking my thread! Just kidding lol. Caitlyn did not lose any weight in two weeks. I am very happy for that. Her GIs office has still not called me back! We have had an amazing week however. Just got back from a homeschool nature trip to the Everglades and saw a ton of alligators! Some a little to up close and personal!


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## Jmrogers4 (Jan 17, 2013)

Yay for no weight loss! Glad you had fun on your nature trip, you can keep the gators though


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## kimmidwife (Jan 17, 2013)

I know they scared the heck out of me!


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## jmckinley (Jan 17, 2013)

Ditto here for the the beef and processed meats with Ryan! Nitrates in hot dogs, etc are an absolute NO! Oscar Mayer now makes a nitrate free bacon. It's a splurge at $8/pack! The beef is just too hard to digest too.

On a search for another problem, I ran across this study. 

http://www.ncbi.nlm.nih.gov/pubmed/17481962

It made me think of Caitlyn and the symptoms. Maybe the elavil does need to be increased. I'm no DR but with part of her SI gone, maybe she's not absorbing enough of it.

Bloodwork looks fantastic! I hope the symptoms are resolved soon and your problems as well.


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## SalBarcia (Jan 17, 2013)

This disease is depressing and it will play mind games. Even though everything is "under control," it's possible to flare every now and then. There's times when I go in and out of hospital for a few week's time, then I'll be flare free for a few weeks/months. It's annoying. Just never loose hope.


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## Marni's mom (Jan 20, 2013)

Hello everyone.  I'm brand new here, and this is my first post.  I was perusing the topics on this forum, and this question caught my attention.  

My daughter is 10 now, but first got sick when she was four years old.  Everything I'm reading that's been posted by others sounds very familiar for us, too.  

Here's my comment/question, though: It's my understanding from speaking with our doctor that if a Crohn's/IBD patient is still having pain they are NOT in remission.  Our doctor said that remission is achieved/reached when ALL the symptoms of IBD are gone/controlled, including pain.

We've been through pretty good periods of time where blood tests were all good and there has been no diarrhea or bleeding, but the pain has NEVER gone away, and therefore, my daughter has not yet experienced remission.  

What is the general concensus on this forum about pain and remission?
There have been many times I have said that if I had to choose between getting rid of all the other issues with Crohn's or getting rid of the pain, I'd choose to get rid of the pain.  It's so hard to see your child living with the constant threat of pain looming.


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## Dexky (Jan 20, 2013)

Hi Marni's mom

I don't care what they call it, if your child is in constant pain, they need to adjust treatment.  No one should have to live with that, especially a child.  

I hope a monitor will come along and move your post to a new thread so more will see it and respond.  Good luck and welcome!


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## David (Jan 20, 2013)

Hi Marni's mom and welcome 

How would you feel about me copying the post that you just made into its own thread as well?  I'd love for you to get even more opinions.  If you'd prefer not, no problem.  I just thought I'd ask


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## kimmidwife (Jan 21, 2013)

Hi all,
Caitlyn went away to a youth convention over the weekend and had a terrible weekend. Firstly she forgot her medicine. Then the second night she started having terrible stomach pain and running to the bathroom. She did not call us because she wanted to go to Orlando to Islands of adventure with the group. She ended up running to the bathroom a whole day and then had a issue on the bus home. There was a bathroom but the driver did not want to let the kids use it and there was no toilet paper anyway. She was embarrassed to speak up to the counselor s and they decided to drive straight through. By the time she got home she came off the bus crying hysterically and ran to the bathroom. I called the counselor s today to complain and also there was an issue with lack of supervision on the program as well. Caitlyn said she is never going on one again. My poor baby!  
I am feeling very overwhelmed as we have changed Caitlyn to a new homeschool program that is less intense but I have to plan the whole curriculum and since I am so new to the whole homeschool it is tough. Anyway just wanted to update you all and vent. And that is why I have not been on so often lately.


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## Clash (Jan 21, 2013)

I'm so sorry she had such a bad weekend. I know what you mean about being overwhelmed by the homeschool curriculum just researching all of them overwhelmed me. I hope she is feeling better soon.


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## Farmwife (Jan 21, 2013)

So sorry to hear this.

As far as homeschooling......can you join a local homeschool chapter in your town. Their a great help to give advice. Also their are "tutors" you can hire for a small (kinda) fee. They come out once a week and set the schedule for the coming week and make sure your kid is up to par. Most these tutors are retired teachers or teaching graduate just trying to keep their degree/resume up to snuff. Just some ideas.


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## crohnsinct (Jan 21, 2013)

Oh no!  Poor girl...just when things were looking up.  

I am scared to death of homeschooling.  I give you guys a lot of credit!


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## Tesscorm (Jan 21, 2013)

I'm so sorry she had such a disappointing weekend!!  Poor girl!  I hope she's beginning to feel better. :ghug:

I've never looked into homeschooling but I can imagine it would be very challenging to organize!  :hug:


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## kimmidwife (Jan 21, 2013)

Farmwife,
I am going to look into that thanks! We did just join the local homeschool group and are actually going to a bunch of activities with them. I am going to continue to speak with them and try to figure things out. Clash, that is the problem I am having as well getting overwhelmed by everything out there and trying to put it together. Are you homeschooling as well?


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## crohnsinct (Jan 21, 2013)

Oh yeah FW and in our area they have a group of homeschooling moms that work together.  Each mom signs up to take a subject and certain levels and then they all meet (at our church) and take each others kids.  So you only have to get a handle on say one subject and a couple of others teach your kids the others.  Helps with the social aspect too.  There are about 35-40 kids in the program.


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## Clash (Jan 21, 2013)

We were actually going to do the K12 program but then we learned about a school in our area that incorporates homeschool students, independent study and private school students. They individualized a schedule for C and he is in the private school but has the ability to move to independent study or even homeschool if he is flaring. So far he has really liked it. Some of the other kids are either going through their own medical issues or using the program because they are involved in a sport(one travels with horseback riding most of the year another wrestles every weekend throughout several states) etc.


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## Sascot (Jan 22, 2013)

Poor girl.  It must have been horrible for her not to be able to enjoy the trip.  Nothing worse than having unsympathetic people in charge and that bus driver should get told off as well.


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## kimmidwife (Jan 22, 2013)

Caitlyn seems to be feeling better. Saw the Gi this AM and she ordered blood work and stool cultures but we are both hoping it was a big. I asked about checking some if her vitamin levels. I couldn't remember all we have discussed but we got calcium, vit d, b12, b6, and folic acid. any others we missed?
we also got the results of my little ones blood tests. everything was good and the ibd panel was negative. she wants me to keep a diary of when she has blood in her stool and when she says her tummy hurts. she is wondering if maybe she has a small polyp that kids get sometimes and can bleed on and off. the only blood test that was very slightly low was her END but it was like a half point below normal so she was not worried. we also discussed my third daughter and she said it can't hurt to get blood work and a fecal calprotectin to put my mind at ease.
Doing ceramics now with my two older girls. TTYL!


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## Clash (Jan 22, 2013)

Kimmidwife, maybe zinc and magnesium? I'm glad Caitlyn is feeling better. I know you are relieved about the blood work results for your younger one as well.

Edit: Sorry Kimmidwife I meant zinc but I was on my mobile and my fingers don't always work right. HA


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## crohnsinct (Jan 22, 2013)

Glad Caitlyn is feeling better.  Spunds like you have a very nice proactive GI who understands what it is like for us parents.  She's a keeper!  I hope your other one is O.K. also.


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## Crohn's Mom (Jan 22, 2013)

That really stinks that she had such an awful time ! 
I'm glad she's feeling better tho ~ maybe she'll change her mind eventually and be willing to try something like that again. :hug:

I don't homeschool, but have you signed up for florida virtual school ??
It's pretty awesome for the homeschool kids.  My middle son did his senior year through them, and graduated a year early.  And while Gab was sick her junior and senior year,she did most of her classes through them too, and the teachers were so amazing and understanding ~ Even when she fell behind !  Actually, a one of her online teachers reset her class twice just so she could catch up ! 

Best of all it's FREE   lol

Florida Virtual School


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## kimmidwife (Jan 22, 2013)

Actually Caitlyn is doing Florida virtual but the teachers have not been as understanding. I don't know I am going to have to figure everything out with this hoemschooling.


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## Crohn's Mom (Jan 22, 2013)

Have you spoken with the teachers yourself ? Or is it just Caitlyn speaking to them?
I know they have to do the introductory phone calls, but have you spoken to them since?

We had text, email, and phone all available during their classes.

If theres anything Gab and I can advise/help you on with it, please let me know ~ we will do what we can


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## Crohn's Mom (Jan 22, 2013)

BTW ~ have you checked into the 504 plan in reference to FVS ?
I would think that it would be required for them to adhere to this as if it were public school.


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## my little penguin (Jan 22, 2013)

Yes 504 plans apply to public virtual schools.


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## kimmidwife (Jan 22, 2013)

Hmmm, we have an IEP maybe I should discuss it with them?


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## Patricia56 (Jan 23, 2013)

IEP should be revised to address the change in school placement to virtual academy (or whatever they call it) and to amend goals/modifications/services as needed so support her in that placement. If you unilaterally changed her placement you need to advise special ed immediately in writing and call for an IEP meeting regarding placement as soon as possible.

The state level contact regarding special education in FLVS can be reached at  877-500-FLVS (3587). You can ask to leave a voicemail message for the Special Education Director of Florida Virtual School Full Time to arrange for FLVS Full Time participation on your child's IEP team and to ask questions regarding FLVS.

And in case you need it, here's a page that describes all the options for enrolling in FLVS - full time, part time (no diploma), homeschool (two options, neither grants diploma)

http://www.flvs.net/Parents/Pages/which-option.aspx

When thinking about this, remember that the point of the IEP is not to find the right "placement" for the child (squeeze child into available placement the district wants to use with shoe horn) but to develop the necessary set of accommodations and modifications needed so that the child can get the benefit of a public education in a given academic setting (stretch or supplement/modify placement to fit child's needs).

What did her IEP call for if she had an extended period of illness that made regular daily school attendance impossible?


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## kimmidwife (Jan 24, 2013)

Patricia thanks for that great information. Her IEP in St. Louis was very basic because her teachers were so great and worked with us. I am going to contact that office tomorrow. I took the girls for their blood work today and hopefully will get the results by next week. I am sick again. My little one loves to share her bugs with me! Just hoping no one else gets it. So looking forward to the weekend and resting.


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## Farmwife (Jan 24, 2013)

Have a good rest and get some sleep.
I hope your feeling better soon.


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## Patricia56 (Jan 25, 2013)

:facepalm:

Kimmidwife, please tell me you already officially transferred her IEP to the Flolrida school district and they have done their own assessment process and she has a Florida IEP.


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## kimmidwife (Feb 3, 2013)

Yes Patricia we transferred her IEP through the charter school she was originally in. Caitlyn has been keeping me so busy with homeschool activities. I have been meeting other homeschoolers and learning a lot. I think we are not going to continue with Florida virtual but are going to do our own program. Incorporating a few different things including some unschooling. I am having such a good time with her. This past week was rough though. My Grandfather who has been ill passed away. He was 96 years old. I am glad he is not suffering anymore and is in a better place but we will really miss him. He is one of the reasons we came back to Florida to be close to him and spend time with him, as well as my parents, and my husband's Dad who all live in Florida.


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## Tesscorm (Feb 3, 2013)

I'm sorry about your grandfather!  Regardless of age, it's always tough to lose a loved one! :ghug:

How is Caitlyn feeling?  Has she been feeling better lately?


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## CarolinAlaska (Feb 4, 2013)

Kim, Jaedyn is homeschooling too.  This has been a very positive move and she loves school so much.  What curriculum are you doing with her...


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## Sascot (Feb 4, 2013)

Sorry to hear about your grandfather!  Hope Caitlyn is doing well just now.


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## upsetmom (Feb 4, 2013)

So sorry about your grandfather..:hug:


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## Dexky (Feb 4, 2013)

Unschooling!. I like that!

Sorry about your gf, Kim!


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## kimmidwife (Feb 4, 2013)

Caitlyn is feeling okay right now thank goodness.
Carolin,
She is currently doing Florida virtual but once she finishes her course from last semester I am going to use a combination of unschooling and a few more traditional things for math and English I think. I am really still trying to figure this whole homeschooling thing out.
What curriculum are you guys using?


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## CarolinAlaska (Feb 4, 2013)

Jaedyn wanted to do Middle Ages for history, so we found a program that uses living books (which I love) and hands on activities (which Jaedyn loves) through a company called Beautiful Feet.  This covers her literature and history.  This year we are trying an ingenius math program called Life of Fred, which is very unique and she does her math without complaining and whizzes through it.  Currently she is doing percentages, but finished the fractions book in about 6 weeks before this.  These are both review topics for her.  Next up will be prealgebra, I think.  I have her doing typing because she is a SLOW handwriter.  She isn't really interested in it, but I think will be grateful later on.  I think she is up to about 30 WPM.  For science we found a program that is on CD put out by Apologia.  I think it is called General Science (for 7th grade).  She can do this on her own, has a lot of hands-on work (experiments, etc).  I also have her doing Bible study and exercising.

Jaedyn homeschooled from kindergarten to 4th grade.  She went to private school in 5th and 6th grade and struggled through it.  She absolutely hated school when she got to 7th grade and was a real struggle for her.  She was sick a lot too and had a hard time keeping up.  Homeschooling has worked out really well.  If she starts slacking off, though, all I have to tell her is that if she won't do her work at home I'm going to send her back to school .  I'm such an evil mom!  That usually does the trick.


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## kimmidwife (Feb 4, 2013)

Thanks for the curriculum info. I heard good things about that math program life of Fred.  I am going to look into getting it.


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## kimmidwife (Feb 11, 2013)

Hi all,
I just wanted to pop in and apologize. I have not been on lately. Life is crazy right now! I am doing tons of research on homeschooling and going to all these homeschool groups and activities plus tons of other stuff going on that today is the first time I have had five minutes to sit down and get on the site! I feel badly as I want to make sure I am being there for all of you. You guys have always been for me. 
Our family is very excited about homeschooling and next year plan to homeschool everyone. We have decided to use a combination of unschooling and more  formal schooling for math and language arts. I heard about this great math program called Life of Fred that I am looking into. Haven't figured out what language arts program to use yet.
We also had some very upsetting news about our health insurance that has me very worried. The government has decided that as of October veterans with Tricare prime will have to go to Tricare standard if you do not live with in 50 miles of a military base. Tricare standard means you have a $3000 deductible a year. I don't know where we are going to come up with an extra $3000 per year. I have started getting friends to write their local government officials asking to not let this pass so far it has not helped. But if any of you would like to write on our behalf I would appreciate it.
Lets see what else is going on. Thank goodness Caitlyn is doing pretty well. My one worry with her is she is still going to the bathroom more frequently 4-5 times per day. She has only occasionally complaining of pain. We reduced the LDN to 3.5 mg because she was having dizzy spells and headaches and since the drop she has only had one headache. The drop didn't affect her frequency of bathroom trips that has been going on for a while now. We did bloods and FC two weeks ago but I have not heard results from the doctor, hoping no news is good news. That is basically what h been going on. So if you don't see me writing to you just know you all are always on my mind and I am always thinking of everyone here!


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## Clash (Feb 11, 2013)

kimmiedwife, I'll be glad to contact my government officials on behalf of this change. A friend of mine is going through the same ordeal. They are trying to get a petition going as well as write-in and phone calls. I read an article a while back that this would be coming down the pipeline and I find it truly atrocious!

It's good to hear that Caitlyn is doing well. I think it is fantastic news about the homeschooling. I really liked the idea of it but I think at the time I was researching I was already stressed and all the info sent me to completely "overwhelmed". I think if I would've been in a better state when researching I would've been able to take in all the information without feeling so overwhelmed. I read great things about Life of Fred when I was researching.


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## Jmrogers4 (Feb 11, 2013)

^^^ Same here, that is awful.  We have a per person deductible up to a family maximum, Should have Jack's deductible taken care of for the rest of the year with the scopes last week.


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## Tesscorm (Feb 11, 2013)

Kim,

No need to apologize!!!   I'm sorry you've got to deal with these financial issues...  I just hate when I hear that someone (me too! ) has to deal with the financial issues on top of all of our other concerns...  just isn't fair!!  Seems very illogical or without justification that they can alter your insurance coverage simply because you don't live within a certain distance of a base.  Is there some sort of reasoning for this?  In any case, good luck with this...  I hope it doesn't come to pass!

Glad Caitlyn's pains and headaches are lessening...  and hoping for good results!! :ghug:


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## CarolinAlaska (Feb 11, 2013)

I'm glad the transition to homeschool is going well.  I miss homeschooling all my kids, but I'm grateful for this job that is allowing me to have insurance for my kids.  I'd hate to think where we'd be without it...  I'm enjoying Life of Fred, as are my kids.  Jaedyn loves homeschooling and as she is 13 and can do her work without help most of the time (dad is there for any questions) it is working out well.  Sure helps with all the school she'd be missing for doctor appointments/not feeling well, etc.  I'm glad that you have something to distract you from this IBD obsession I've fallen into as well!


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## Sascot (Feb 11, 2013)

Sorry to hear about the insurance issues, they do try so hard to pay out as little as possible.  Glad the homeschooling is getting sorted out - all you homeschool mom's are amazing.  I wouldn't have the patience or the get up and go needed to organise it all.  Hope Caitlyn's tummy pains and bathroom trips don't start getting worse - just a bump in the road!


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## kimmidwife (Feb 12, 2013)

Ps. I forgot to mention that Caitlyn has been waking up early to bake her little sister hello kitty cookies and make her lunch. I guess she is feeling better! I want to post a picture of one of the cookies but have no clue how you tech savvy people do it. Can one of you PM me and I will do it a little later when I get back from my doctor appt.


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## Brian'sMom (Feb 13, 2013)

Kim, waiting 2 weeks for lab results and homeschooling....wow you have patience! My sister homeschooled all her kids too. (She has 7). All her kids are so smart. Did really well on ACT/SAT. Got all kinds of scholarships at college level. I've been impressed. I always told her; I wish she lived closer so I could enroll my kids in her homeschool!


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## kimmidwife (Feb 17, 2013)

Hi all,
Have had a crazy weekend. My 12 year old daughters best friend and mom came to visit for the weekend from St. Louis. Her Mom fell on our step and hurt her knee, it was so crazy, hopefully she is fine though. They went home today and she will have it checked out tomorrow. Don't think anything is broken though she did not want to go to the ER. My best friend from high school is also in town for the weekend and we are about to go see her. I just wanted to pop in and wish everyone a happy Presidents' Day weekend!


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## kimmidwife (Feb 26, 2013)

Hi all just wanted to update. It has been a few very busy weeks. Yesterday I officially pulled two of my other kids out of school and are goi g to start homeschooling them as well. I have been putting together our homeschool program and am very excited about it.
Today we see the GI doc and get my third daughters test results ( blood work and FC). Keeping my fingers crossed that her stomach aches were school stress. (  keeping the bubble intact!)


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## Tesscorm (Feb 26, 2013)

I hope the test results are good!!! :ghug: :ghug:

And, good luck with the homeschooling!!!  I'm very impressed!  That's quite a challenge for you! :thumright:


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## Sascot (Feb 26, 2013)

Hoping that bubble stays intact!  Good luck with the homeschooling - don't think I could do it myself, hope it goes smoothly.


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## Jmrogers4 (Feb 26, 2013)

Hope it all goes well and you get good results back.  You have my admiration about homeschooling, I truly do admire those that can and do make it work.


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## CarolinAlaska (Feb 26, 2013)

Taking Jaedyn out of school to homeschool was definitely the right move, especially with all the medical stuff, pain etc for time lost at school.  I can just reset due dates, etc and she doesn't get behind.  She also had less pain for the first couple months out from less stress of the schoolwork and social pressures.  Medical issues have increased the stress levels, but hopefully she'll feel better soon.


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## kimmidwife (Feb 26, 2013)

Hi all it has been a busy day. Firstly good news daughter #3 all her tests were normal. Yay! Caitlyn on the other hand lost another two kilos. All her labs are normal. Her FC is less then 15. And she is feeling pretty good. To be on the safe side the doctor wants to do the pill camera to make sure there is nothing we are missing. Caitlyn was very agreeable to it which I was happy about. She will set her up to do the placebo first. The homeschooling went very well today. The kids are more relaxed and happier then I have seen them in a long time!


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## Clash (Feb 26, 2013)

Kimmidwife, glad she was agreeable to the pill cam. C's MRE was good and with all the testing so far they really can't find anything responsible with his failure to gain weight. If it doesn't turn around then we may be doing pill cam too just to double check small bowel.

Oh I wish we lived close because C is getting so far behind even with this flex schedule due to absence and I feel so overwhelmed by setting up the curriculum to get him through all of this. I am so glad you were able to get past the "overwhelmed stage" and find a program you are excited about!!

Good luck on the pill cam!!


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## Tesscorm (Feb 26, 2013)

Kim, that's great news!!  Both that your younger daughters results were good :banana: and that Caitlyn is good with doing the pillcam! :banana: :banana:

Nice to hear good news!!


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## Clash (Feb 26, 2013)

Oh yeah and Woohoo on the good test results for your younger daughter!!!


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## my little penguin (Feb 26, 2013)

yippee on good test results.

Good luck on the homeschool


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## CarolinAlaska (Feb 27, 2013)

Glad to hear all went well.  Homeschooling can be such a good thing and will bring you closer to your kids than ever.  I'm glad your older dd's tests came back normal.  The pill cam was probably the least of difficult tests that Jae had to endure, but it does still require a clean-out .


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## Farmwife (Feb 27, 2013)

I hope your girl's test goes smoothly.:heart:
Of course ya know I'm a huge fan of homeschooling.:ybiggrin:


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