# Is there really such a thing as remission?



## kimmidwife (Mar 14, 2013)

Ok, I am posting this because I am wondering if there really is such a thing as remission. All of Caitlyn's labs are perfect, her FC is perfect. Her scope looked great. Her MRI looked great. Yet she continues to have symptoms and now she is developing an erythema nodosum on her leg. She is spending more time in the bathroom again and still losing weight. Although this week she only lost 4 oz I am glad to say. I have been trying to get her to eat and snack more which may have helped. The doctor has finally scheduled the pill camera for April 4th. we do the placebo cam next week.
I am just so frustrated and wondering is my baby ever going to be in remission and having no symptoms. Urgh, I hate crohns!!!!:voodoo:


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## Clash (Mar 14, 2013)

I am so sorry she is having problems right now. It makes all the more difficult to wrap your mind around when the tests don't reflect the symptoms. I hope the pill cam goes well and things improve quickly!!


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## jmckinley (Mar 14, 2013)

I'm sorry she is having symptoms. I wonder the same thing sometimes. Ryan is in "remission" also, but we find that a stressful event, like honor band, will produce symptoms for a few days. It's tough living on that brink where it's okay, but any bump can set things off. For Ryan, a growth spurt or hormonal change is a bump too. Blahh!

I hope the pill cam shows what's going on! Hugs!!


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## Hope345 (Mar 14, 2013)

I am wondering the same thing... it never ends.  We are currently starting on the probiotics: acidophilus.  when I get my kefir  grains, we will make our own.

Kim, I know how you feel, it is hard knowing sometimes where the current problem is, and what is the best way to treat it.
Our B is currently in a flare, which I almost cant remember her not being in one.  We think she just had the flu, it is hard to say for sure, and now she is just irritable, uncomfortable and trying her best to live her life.

I am so sorry your daughter is having problems still.  My heart goes out to you both.


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## Tesscorm (Mar 14, 2013)

I'm so sorry Kim that Caitlyn is still having problems.   It's so hard when tests can't pinpoint the problem!  I hope the pillcam can give you some idea of what's causing the issues! 

Thinking of you and Caitlyn!!!  :ghug: :ghug:


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## CarolinAlaska (Mar 14, 2013)

Was she checked for strep?  EN can be caused by a recent strep infection also...  Perhaps she is in remission and there are other causes of her symptoms.  I hope so.


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## kimmidwife (Mar 14, 2013)

She has not been checked for strep recently. She has had the erythema nodosum another time during a mild flare.


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## upsetmom (Mar 15, 2013)

I'm so sorry Caitlyn's still having problems...:hug:


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## Sascot (Mar 15, 2013)

Sorry to hear Caitlyn is still having issues.  Is she maybe allergic/sensitive to something she is eating rather than the Crohns' causing issues?  Might be worth keeping an eye on her diet as well.  Also, has she been checked for threadworms?  I know over in Scotland they never treat them much - in South Africa we used to take worm mixture once a year just in case. I believe they can cause pain if they have been there a while.  Probably a very small chance, but worth a check


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## rollinstone (Mar 15, 2013)

Sorry to hear your daughter is still having a bad time, but on the bright side atleast the crohn's isn't damaging her intestines, hopefully she will feel better soon. Perhaps it's a bug or virus? Or has this been lingering on too long


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## Dexky (Mar 15, 2013)

It seems there's no rest for the weary Kim!  Good luck with the pill cam! I'm sure it's no consolation, but I don't think EJ has ever reached full remission.  There's always been above average bathroom trips for him as well.  I will say that since he started supplementing nutrition with Boost, he has grown quite a bit.


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## Devynnsmom (Mar 15, 2013)

((((((hugs)))))) Kim, I'm so sorry she's not feeling well  I hate this disease too. I hope she feels better real soon.


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## Twiggy930 (Mar 15, 2013)

We have the same problem around here.  For us it seems like remission still means having the not so occasional bad day.  For my son it is mostly abdominal pain and an overall yucky feeling (like he has the flu minus a fever).  I am glad they are doing a pill cam.  This is the one thing we have not had done.  I often wonder what it would show but my request for one has been denied in the past.  

My son has had a marked reduction in his bad days ever since starting a probiotic and high doses of vitamin B2.  He has had an even further reduction since he started having a Boost at least once a day.  

:hang:


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## Mehita (Mar 15, 2013)

I second Sascot's advice. Have you done a food log? Tested for food allergies or intolerances? It almost sounds like some sort of malabsorption...? Has she been tested for Celiac?


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## Jmrogers4 (Mar 15, 2013)

Sorry she is still feeling bad, hope the pill cam gives you more information and Crohn's is under control and it is just something easily fixed.
I know how hard and frustrating when you almost hope it shows something so you have answers but you really want it to show nothing as well.


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## kimmidwife (Mar 15, 2013)

I am pretty sure she was checked for celiac and it was negative. I have been bad about the probiotic. the one we have has to be refrigerated and I forget to give it to her.I am going to get a new one that doors not have to be refrigerated. I did not know about b2. my other daughter takes b2 to prevent headaches. she refuses to drink the boost.I am going to go to the vitamin shop and see if they can recommend something.


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## Jenn (Mar 15, 2013)

When do the docs actually declare remission? I would think it's a certain amount of time with good labs and no symptoms, but I don't actually know, we haven't gotten that declaration. Maybe it's not possible with Crohns, I mean, maybe it is for a short while, but then something triggers a flare, which would kick you right back out of remission.


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## Tesscorm (Mar 15, 2013)

Jenn said:


> but then something triggers a flare, which would kick you right back out of remission.


I think this is what happens too...  although Stephen's been pretty much symptom free, his inflammation has always been present so I really am not speaking from experience :ybatty: but, I agree with Jenn...  you are in remission and then something (diet, environmental, etc.) will trigger your immune system.  It may not always be a 'major' flare (ie what initially drove you to a diagnosis) but it may just be enough to cause issues...  

When Stephen was a toddler, he used to get these mild rashes that the allergist believed was some sort of mild allergy.  His comment re trying to find what it was through elimination was it could be anything he ate, touched or breathed!!  I think IBD is like that...  it's so hard to narrow it down and there may be more than one trigger, so you find one, eliminate it and suddenly there's another flare again and you don't understand why!


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## Farmwife (Mar 15, 2013)

I'm told their's such thing as "remission" but have yet to be told she's there yet. :confused2:
Until then I consider it a myth.:cool2:


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## Twiggy930 (Mar 15, 2013)

I don't believe our GI will declare anyone to be in remission but instead talks about the presence or absence of active disease.  It's all semantics really because if you feel like crap you feel like crap remission or not.  

We also had trouble remembering the probiotics when we used one that had to be refrigerated.  We now use one that is shelf stable and our GI prefers it.  It is called TuZen.  I just put it in his pill organizer along with all the other meds and that way we don't forget it.  We do the B2 because there was some thought that his abdo pain might be due to abdominal migraines so the thought was to put him on the B2 as a migraine prevention.  I realize that it is a stretch but I figure it is benign and can't hurt to try it. Interestingly we recently stopped giving it to him and he had pain again so he is back on it.  It may be an imagined effect but hey I don't care at this point I'll take whatever we can get.


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## kimmidwife (Mar 15, 2013)

I am going to get that probiotic and try the B2 as it can't hurt. Interestingly enough caitlyn and I were at the library today. She loves looking at cookbooks. She saw a book called eat well, live healthy. She decided to take it out because it mentioned crohns on the front. ( I was shocked because she has been so resistant to making diet changes) on the way home she started reading it and she said Mommy this book is about something called the specific carbohydrate diet. She read a lot of it and I guess we will see what happens she said she would be willing to try some of the recipes.


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## Twiggy930 (Mar 15, 2013)

I really liked Everyday Grain-Free Gourmet by Jenny Lass and Jodi Bager.  Even though we aren't following the diet anymore I still make the almond meal waffles.


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## Brian'sMom (Mar 15, 2013)

There seems to be so many things that crohn's can affect...making remission hard. I hope Caitlyn gets to feeling better soon.


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## CarolinAlaska (Mar 16, 2013)

<<<HUGS>>>>  Even if there is no such thing as Crohn's remission, I'll take "no active disease present".  Whatever the name, I wish all our kids could find it.


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## DustyKat (Mar 16, 2013)

Oh man Kim, I am so sorry to hear that Caitlyn is having problems.  :ghug: I hope you are able to find answers soon and Caitlyn has long and lasting relief. 

:hang: Mum...there really is such a thing as remission and one day, very soon I hope, it will come calling on Caitlyn, bless her. :heart: 

Dusty. xxx


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## izzi'smom (Mar 16, 2013)

I am so sorry that Caitlyn isn't doing great. It is so frustrating to be where you are...hoping the pill cam gets you some answers and sending loads of (((HUGS))) your way. :heart:


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## AZMOM (Mar 16, 2013)

Im with you, Kim. Sigh..........

My dear friend with healthy healthy children said "It must be hard for you sometimes because there's always the 'next thing'." She's so right. 

Hugs-

J.


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## kimmidwife (Mar 16, 2013)

The never ending story do you all remember that movie? Sometimes I feel like that is my life lol. Did I tell you guys we got a chinchilla a few weeks ago and she h been having issues so we drove up to this specialty pet store to get some advice. It was a really cool pet store with a lot if unusual animals. Anyway they told us if you buy anything today you can have a free baby duck. Caitlyn loves ducks. She talked us into getting two baby ducks. I told her our house is becoming like the movie "we bought a zoo."


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## DustyKat (Mar 16, 2013)

Ahahaha, no way! :quack:


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## xmdmom (Mar 16, 2013)

Sorry to hear that you and Caitlyn are dealing with symptoms and uncertaintly. It's definitely not easy!


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## Twiggy930 (Mar 16, 2013)

Baby ducks!!!!  That's awesome!  Where do you put them?  Do they need a pond?  I've been itching to get chickens but with my work schedule I don't have time to care for them so I have refrained.  We are a crazy pet house too.  Our budgie recently had a near death experience and had to spend 3 days in a bird hospital.  :ybatty:


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## Jmrogers4 (Mar 16, 2013)

Had ducks when I was growing up named Pete and RePete. They would follow you around the yard


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## Tesscorm (Mar 16, 2013)

OMG, Kim, I think that's great!!  

I'm not sure if many/any of you heard about the monkey found in the Ikea store in Toronto???  (Try the link below, if it doesn't work, just google monkey in ikea.)  Ever since then, I've been telling my husband I'd love a pet monkey!!! :rof:  ....so far, his response has been decidedly cool!  :lol:


http://www.huffingtonpost.ca/2012/12/09/monkey-ikea-toronto_n_2268111.html


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## DustyKat (Mar 16, 2013)

Can you own a Monkey in Canada? 

Oooooo, I see those US shows and I am always gobsmacked at the exotic animals that you can keep as pets in the US! :yfaint:! :lol:


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## Tesscorm (Mar 16, 2013)

DustyKat said:


> Can you own a Monkey in Canada?


I think not... but, WTH?!?!  How much FUN would that be, having a monkey to play with?!?!? :applause:

...I haven't been following the story closely but, last I heard, 'custody' of the monkey is/was being decided in the courts.  Last I heard, the monkey was being taken care of by an animal care facility and the owner, who happens to be a lawyer, was fighting to have it returned to her.


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## DustyKat (Mar 17, 2013)

LOL! Family Law Court? 

Hmmmm, I don't know Tess, they can be vicious little blighters! Much like kids! :lol:


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## kimmidwife (Mar 19, 2013)

Yeah Tess monkeys can be mean! You should try a chinchilla they are smart little buggers! Our little girl already comes running up to the cage door as soon as we come in the room to get us to take her out.
Meanwhile back to crohns, I am still waiting to hear back about the dummy pill, urgh these doctors not comming through with their plan is driving me crazy!


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## Tesscorm (Mar 19, 2013)

Well, not to worry...  I think it would be a tough sell to get my husband to agree to a monkey! :lol:  We have a puppy coming in a few weeks!  Think we'll have our hands full with that!

Kim, hope you get a date soon.  Totally frustrating when doctors seem to take their sweet time and our kids suffer the consequences! :voodoo:


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## Clash (Mar 19, 2013)

Oh the waiting is the worst!!! I hope they nail down the plan and enact it quickly so she can go ahead with the testing!! (HUGS)


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## QueenGothel (Mar 19, 2013)

Chinchillas, Ducks ok but Monkeys idk... like anyone dealing with IBD needs something that throws its poo around?  Who flung poo???  lol 

Back to remission, heck I was told we had the Cure with Rowan having UC and a proctocolectomy and I would at this point settle for remission for a bit, between surgeries and cases of pouchitis, I have yet to feel either remission or the cure.  Still waiting for it so I can breathe again.  I think it is fictional as well.  The never ending story ends and then the sequel comes out... Who'd figure. :ybatty:


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## kimmidwife (Mar 19, 2013)

I just spoke with the doctors office. They still have not yet set up the dummy camera and now the doctor is telling us we have to go to her regular office. I hate that. I don't mind the length of the drive 1.5 hours but it is a confusing drive on several different highways with lots if traffic. I hate driving there! I don't mind going once for the actual camera but now to have to go there probably two weeks in a row!


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## Dexky (Mar 20, 2013)

Nothing stresses me out like heavy, big city traffic!  Have you a GPS unit?


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## kimmidwife (Mar 20, 2013)

I use my phone and of course last time it got me lost. I printed out directions from mapquest which is more accurate. Meanwhile I am sooooo upset with Caitlyn. She lied to me the past few days and has not been taking her medication. What is wrong with teenagers? She said she feels like she doesn't need it anymore. Urgh!!!!!! Thank goodness I keep her medicine in a daily pill keeper. That way I am able to see if she doesn't take it. I told her from now on she will take it in front of me and I can't trust her. I also grounded her no computer for the next two days except for school work.


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## Mehita (Mar 20, 2013)

Teenagers are all powerful and all knowing, superhuman, and invincible... (not). I'm sorry she thinks she doesn't need to take them. That's frustrating. You handled it well though, mom. Good job.

Aren't pill organizers wonderful? I never thought a pill organizer would be such an important part of our lives.


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## Twiggy930 (Mar 21, 2013)

Mehita said:


> Aren't pill organizers wonderful? I never thought a pill organizer would be such an important part of our lives.


YES!!!  I check my son's constantly, kinda like a nervous tick... :ybatty:


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## Jmrogers4 (Mar 21, 2013)

Love pill organizers, Jack missed two nights last week.  Had a long talk about you are feeling good because the medicine is making/keeping you feeling good and it is very important not to forget.

The lying is killing me!  What is it with teenagers? We never had this issue before.  The medicine is one issue and while not okay at all, I can kind of understand the teenage logic - and what makes them think we wont find out?.  We keep have the repeating conversation as you get older and are wanting more freedom and privileges we need to be able to trust you completely and the lying about these things doesn't help.


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## Clash (Mar 21, 2013)

Yeah, I don't get the teenage thing at all!!
We've got the daily pill organizer
I ask "Did you take your meds"
Response "Yes"
I check and he hasn't!!!

Umm...what part of their brain is not telegraphing the obvious...If you lie about taking your pills it is easy to discover...ie she will check the pill box!!!

He has no probs with the "meds" it is the vitamins he skips...his logical reasoning tells him they aren't necessary...umm okay.

Hasn't been an issue since the "cute nurse" at the hospital chastised him and explained the importance of them...hmm


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## Tesscorm (Mar 21, 2013)

Kim, sorry you're dealing with this! :yfaint:  It is so frustrating when they won't listen to you!

Clash, I think sometimes the 'lie' isn't intentional...  they say 'yes', intend to go back and take it and then forget again! :lol:


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## Hope345 (Mar 21, 2013)

I think it is because they know we are taking care of things and who wants to think about being sick all the time?   I am hoping it will come with growth and maturity.   

Our children are blessed to have us at this time in their lives, and it is so great to hear that some of them are feeling well.
I cant wait for that to happen with B.


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## Johnnysmom (Mar 21, 2013)

kimmidwife,

Being the 'germaphobe' I am, just a reminder that baby ducks can carry salmonella.  Not uncommon with lots of small animals but a good hand washing is a must after touching.  Better safe than sorry


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## kimmidwife (Mar 21, 2013)

Johnny's mom,
We do very strict hand washing after handling any of the animals. I am also a total germaphobe and starting to think I was nuts to say yes to theses animals. Luckily the ducks will be outside and living on the lake behind our house in a few months. Starting next week they will be in the backyard which will be a little better. The chinchilla is another story. They can actually carry giardia but we had her checked by the vet and she is negative. They are the messiest animals but so cute and so sweet. Oh well I already told the kids they are taking the chinchilla when they grow up and move out.


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## kimmidwife (Apr 3, 2013)

Just wanted to update everyone. Caitlyn is going for the dummy pill camera tomorrow. She has been having more stomach pain the past few days and has been spending a lot of time in the bathroom. she denies seeing any blood but conveniently forgets not to flush so I can look. (teenagers!) We had a rough couple of days. We had built a new pen for our little ducks and an animal got in and killed them. We are all heartbroken over this. The girls cried and cried (the Mommy did too). They are feeling a little better today. We told them they can get more ducks if they want and we will build a new stronger enclosure for them.


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## Clash (Apr 3, 2013)

I hope the the procedure goes well! So sorry to hear about the baby ducks!!


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## DanceMom (Apr 3, 2013)

Hope the dummy pill goes well!  We were given ours to take home and had to start a clear liquid diet at noon the day prior to swallowing the pill.  Were you given similar instructions?


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## Devynnsmom (Apr 3, 2013)

Hope the procedure goes well. So sad about the ducks


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## Sascot (Apr 4, 2013)

Oh no the poor little ducks!  Just wanted to wish Caitlyn luck with the dummy cam


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## Tesscorm (Apr 4, 2013)

Good luck with the pillcam!!!!   I hope you get some explanation for the pain!

And soooo sorry about the ducks!   Poor things... both the ducks and the girls!


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## Jmrogers4 (Apr 4, 2013)

Poor little ducks  Hope the pill cam procedure goes well


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## kimmidwife (Apr 4, 2013)

Hi all,
Caitlyn swallowed the dummy pill camera on the second try. I was so proud of her! We did the x ray 5 hours later and I looked at it. It appears to be right around the area of the right hip bone. I can't figure out where it corresponds to exactly in the intestine. I think it may be the terminal ileum area. Anyway I think she will have to repeat it tomorrow but we have to wait for the radiologist to read it and the doctor will call us in the morning. After we were done at the hospital the girl went kayaking. It was so much fun!


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## DanceMom (Apr 4, 2013)

Glad she was able to swallow it so easily!  A had a little more trouble.  We did ours at home and just waited for it to pass - no x-rays involved.  A passed hers in about 6 hours.

And kayaking is awesome!  My favorite kayaking experience was in the bay and a playful dolphin kept swimming back and forth under my kayak, popping up next to me and squeaking.  Would love to go and take my girls some day.


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## Hope345 (Apr 4, 2013)

Glad you all had a good time and the procedure went well for her.


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## Dexky (Apr 5, 2013)

You think she'll have to swallow another dummy cam??


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## mario (Apr 5, 2013)

So sorry for these little guys. But I have to say I consider myself to be in remission. Had major op in 2009. I take meds religiously and go easy on dairy, but I swear I have had absolutely no issues since recovery from op. not one single twinge of pain! Fingers crossed and touching wood here lol!! Just wanted to assure you remission is possible. All the best and big hugs to your little ones. Marie x


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## Karin (Apr 5, 2013)

kimmidwife said:


> Ok, I am posting this because I am wondering if there really is such a thing as remission. All of Caitlyn's labs are perfect, her FC is perfect. Her scope looked great. Her MRI looked great. Yet she continues to have symptoms and now she is developing an erythema nodosum on her leg. She is spending more time in the bathroom again and still losing weight. Although this week she only lost 4 oz I am glad to say. I have been trying to get her to eat and snack more which may have helped. The doctor has finally scheduled the pill camera for April 4th. we do the placebo cam next week.
> I am just so frustrated and wondering is my baby ever going to be in remission and having no symptoms. Urgh, I hate crohns!!!!:voodoo:


Why dont you try Revellex infusions??  That totally changed my life.  All the other medicyne did not had any affect on me


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## Karin (Apr 5, 2013)

I am on Revellex infusions for the past 2 years and in remission.  Who else is on Revellex and how long? Did you have any relapses while on it? I'm just scared my happy bubble is going to bust with a relaps? Can anybody tel me please.  Thanks Karin


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## Jmrogers4 (Apr 5, 2013)

Karin - Revellex is known as remicade in the US and I believe she has already tried that.
It really has worked well for a lot of people though.


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## kimmidwife (Apr 5, 2013)

Quick update,
The dummy pill was not seen on this mornings X-ray so she must have passed it and we didn't catch it. We do the real thing on Tuesday.


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## my little penguin (Apr 5, 2013)

Glad the pill cam went well- good luck next week.


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## DustyKat (Apr 7, 2013)

Good to hear the dummy run went well!  

Sending loads of luck and good wishes that the real one does the trick and gives you lots of fab data! :goodluck: 

Dusty. xxx


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## CarolinAlaska (Apr 8, 2013)

Good luck with the real camera!  Will your daughter have to have a full prep the day before?  Jaedyn did.


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## kimmidwife (Jul 17, 2013)

I know it has been a while since I have written in this thread but I am questioning once again if there ever will be a true remission in this illness


I have a question for you. we may have touched on this once before in the forum but I am confused about something. The GI tells me Caitlyn is in remission by everything, labs, colonoscopy, pill camera. however it still seems like every once in a while she gets symptoms resembling a crohns flare. Pain, diarrhea, back pain, joint pain etc. it will last a week or two and then usually seems to clear up on its own. Back in September she did need to go on a short course of steroids to get it under control. Each time this has happened her labs etc remain normal. i am not sure what to make of this. Are they true flares or something else? Is it just that these kids are more sensitive to everything and so something can make their system upset more easily? Does this happen to your kids or any other crohnies we know? The reason I bring this up now is I got a call from camp that Caitlyn has not been feeling well. It started over the end of last week then she seemed a little better so they didnt call and today she told them again she is not feeling well. She has been having bad stomach pain, diarrhea, joint pain, and back pain. This sounds to me like a flare but how can she flare if she is in remission? I thought maybe a stomach flu but no one else is sick. Her GI suggested maybe she could have a touch of food poisoning. Anyway camp is taking her to a lab tomorrow for blood work and fecal calprotectin. (Don't ask what we went through to find a lab her camp is in the middle of nowhere) I just want to know if there will ever be a time where we won't have to worry about crohns that it will stay in the background and not rear its head.


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## Dexky (Jul 17, 2013)

How much longer is she going to be there Kim?  I hope she feels better soon!


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## kimmidwife (Jul 17, 2013)

Dexky,
She is going to be there almost another month.


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## Jmrogers4 (Jul 17, 2013)

That really sucks Kim, I hope she is feeling better soon.  I can tell you from my husband over the last 20 years that he has been in what they call remission for many years but will still have episodes "mini-flares" as we call them that last about a week or so.
Jack I couldn't tell you as we have only experienced "remission" for the last few months.  
Hope it clears up quickly.


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## Tesscorm (Jul 17, 2013)

Kim, it hasn't happened to Stephen for a while (that I know of??) but he used to have periods when he just didn't feel well - less appetite, diarrhea, tired, backache and what he described as feeling 'off'. In his case, it always passed pretty much on its own in a few days. When I was worried once, Stephens response was 'I hv crohns, I'm going to feel 'off' sometimes'. IDK if that's normal or not but fits what u said abt thes kids maybe just being more sensitive to certain things???

Hope it passes soon for her so she can enjoy the time away!!


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## DustyKat (Jul 18, 2013)

Hey Kim, 

With my kids remission I would have to say that they have not experienced anything that has replicated what they were like at diagnosis. 

After Sarah's episodes of repeated normal tests I am forever shy of relying on them alone if what is in front of me is telling me a different story. If Caitlyn's symptoms are reminiscent of her Crohn's then i would tend to think that is what it is. Certainly a fall back to Pred to me would indicate a flare. 

Now the thing that would interest me is when do these 'relapses' occur? 

Are they associated with a change of routine and/or stressful times? 
Allowing that all stress is not bad (exams, fatigue etc) but there is also good stress (excitement etc) 

I could well see that given these sort of circumstances that mini flares/sensitivities could come into play. Bad enough to cause symptoms on the surface but not long enough to cause lasting issues as once the catalyst is removed then the symptoms abate. 

Maybe we need to relabel things:

Mini flares - when flares occur due the underlying disease. Labs may or may not support that the Crohn's is active but a fall back to Pred, EN or something else is required to pull it back into line. 

Pseudo flares - when Crohn's like symptoms are produced e.g. loss of appetite, weight loss, abdo pain, diarrhoea etc but are stress related and abate once the stressful episode has passed.

TBH I don't think the kids will ever be able to say to me...I have a sore stomach, I feel off, I'm not hungry and on it goes...without my first thought, quickly followed by fear and panic, is Crohn's! :eek2: 

I hope all goes well Kim and this soon passes with no lingering effects, bless her. :heart:

Dusty. xxx


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## kimmidwife (Jul 18, 2013)

Dusty,
These episodes do seem usually to occur at times of change in routine like camp or last year after we moved. So maybe this is a pseudo flare. Her camp just called. They are supposed to go on a big trip Sunday which is for five days they go up to Canada and back again. They are worried if Caitlyn should go or not. I spoke with the camp doctor and suggested we talk to our GI in Florida and see if we get her started on the steroids tomorrow and if she is feeling better by Sunday let her go on the trip. She really wants to go.


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## DustyKat (Jul 19, 2013)

Ugh! I feel for you both Kim. :ghug: 

I so hope things settle for Caitlyn and she is able to go on the trip, bless her. :heart: 

Dusty. xxx


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## kimmidwife (Jul 19, 2013)

Hi all,
Visiting day is Sunday so I will update after I see her. Wishing everyone a healthy and peaceful weekend!


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## DustyKat (Jul 19, 2013)

Bet you can't wait!  

Safe travels and I so hope you find her well Kim. :hug: 

Dusty. xxx


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## Twiggy930 (Jul 20, 2013)

Our GI assures me that my son's Crohn's is under control.  All labs, including fecal calprotectin, come back normal.  But my son still gets a day or two here and there where he doesn't feel well.  He describes it as an overall feeling of being unwell (usually some abdo pain as well) and he looks unwell when it happens (clammy, dark circles under the eyes, etc.).  Doc gives us no explanation for this.  I too would like these episodes to go away as the interfere with EVERYTHING, ie. school, swimming lessons, music lessons, vacation, etc.   My son probably has about 3 - 5 days per month when he feels like this.  It is very frustrating.

I hope Caitlyn is feeling better soon and can go on the trip to Canada.


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## Dexky (Jul 21, 2013)

I don't know Twiggy!  3-5 days a month sounds like quite a bit!  I know my son is not in good remission but he doesn't have that many bad days.  When is the last time he had any imaging?


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## kimmidwife (Jul 22, 2013)

Hi all,
Sorry I didn't update yesterday but I was soooo tired from visiting day. It is so hot at their camp thank goodness it doesn't seem to bother the kids so much. I couldn't wait to get back to air conditioning. Anyway here is the story. The day we took Caitlyn from one camp to the other she already had a little sniffle. She says by that night she really felt yucky and sick so we think that brought on a little flare up. Then she finally started feeling better but guess what? Yep you guessed it Aunt Flo came to visit. We already know Caitlyn has kind of a mini flare every month during that time of the month (which I really think is just normal that time of the month stuff maybe made worse a little by having Crohn's). All her labs came back so far normal. FC and some stool cultures still pending but they decided to let her go in the trip. Yay!!! The doctor this week was very nice and he was ex Air Force like me so we had some things to chat about. At this camp they get a different pediatrician to come every week. (I guess the doctors don't want to take to much time off from their practice so each one gives a week). So that's the story. Hopefully won't hear from her and she'll have a great time.


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## DustyKat (Jul 22, 2013)

Thanks for the update Kim!  

Ugh! The monthly visitor! I hope that is what this glitch is down to hun and Caitlyn is soon on top of things again and having a fab trip away! :dusty: 

Dusty. :heart:


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## Tesscorm (Jul 22, 2013)

Hope all goes well and she feels well for the rest of her stay at the camp!!


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## CarolinAlaska (Jul 22, 2013)

Kim, I'm sorry Caitlyn is feeling poorly at camp.  I think stress is such a big part of my daughter's down times.  Camp is a huge stresser - and think of living in that heat!  I'm glad she gets to go to Canada.  Hopefully she'll perk up soon.  I wonder if the docs should say a patient is in remission if they haven't had any flares for x number of months and just not go on the test results...


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## kimmidwife (Jul 31, 2013)

Caitlyn's fecal cal. came back a 20. I have not heard again from camp. So I am happy she is doing well! Been very busy with our project and hopefully will be able to reveal it soon!


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## Jmrogers4 (Jul 31, 2013)

Fingers tapping... waiting for the big reveal!  It sounds like she is having a great time. No news is good news right well at least I hope so in this case.


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## Ands (Jul 31, 2013)

Kim, so pleased all appears to be OK for now...

I'm still not convinced J has found remission since diagnoses last year, although GI says he is.  

He is still tired, always with mouth ulcers, too much senna and he is running to the loo, too little and he doesn't go at all.  Now with eye trouble as well and we're not convinced on allergen answer as Steroid drop cleared up the bad eye and now the other one is getting red.  Today he's been out of sorts too, just not feeling right.  Also he always talks about his two lives, one to the world outside the front door whilst he smiles and copes and the other inside when he feels he can relax and show how he really feels.  Now is this really remission????  

Interesting topic, to which I wish I could answer with authority!

Xxxx


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## kimmidwife (Jul 31, 2013)

Ands,
That does not sound like remission. Maybe it's time for a second opinion if your current doctor is saying this is remission.


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## kimmidwife (Aug 18, 2013)

Hi all,
Just wanted to pop in and say howdy. I have been spending hours and hours on figuring out our homeschool program so have not been even checking in which I apologize for and want you all to know you are always in my thoughts. I also have been working hard on our project. My kids come home from camp this week. Yay!!! I can't wait to see them. Missing them soooo much. I am hopefully almost ready for our homeschool year. Caitlyn did. To do well in math this past year due to all the school she has missed over the past several years. This year I have decided to have her do a few placement exams and then try to figure out how we can catch her up. I am thinking of sending g her to a math tutor possibly or using an online tutor. I heard from Caitlyn last week that her stomach is acting up again but I think it is camp. Different food late nights etc. anyway that's it for now! Sending hugs and healthy wishes to all!


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## Twiggy930 (Aug 18, 2013)

Have you checked out the Khan Academy online math tutorials?  My son used them to keep up with math when he was missing a lot of school.  It is free and I find them excellent, especially for math.  I'll attach a link.

https://www.khanacademy.org/


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## my little penguin (Aug 18, 2013)

Wow thank you twiggy930
Soooooo much!!!
Granted DS is only 9 
But I can see us using this even for my oldest - just for fun


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## Clash (Aug 18, 2013)

My son used Khan Academy at times as well for explanations on Math sections when he was out of school last year. My daughter also used Khan for her college math classes a couple of times...definitely good stuff!


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## Mehita (Aug 18, 2013)

Love Khan Academy!


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## Twiggy930 (Aug 18, 2013)

Here is a link to a TED talk where Salman Khan talks about Khan Academy and education.  I found it really interesting.  

http://www.ted.com/talks/salman_khan_let_s_use_video_to_reinvent_education.html

MLP - It is totally appropriate for even a 9 year old!  The math tutorials start right from the beginning (i.e. addition and subtraction).  They really are fantastic.  I wish they were around when I was being tortured by calculus!


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## upsetmom (Aug 18, 2013)

kimmidwife said:


> I also have been working hard on our project.


Still keeping us in suspense!!!


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## Jmrogers4 (Aug 19, 2013)

Love Khan Academy!  Jack uses them as well, especially when dad is not available to explain.  I was even able to understand which is saying something Algebra is so not my strong suit!
Yes, waiting to hear about project!!!


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## kimmidwife (Aug 19, 2013)

I plan to use some khan academy probably my issue though is this whole core curriculum business. I am very against it. I think it will be the dumbing down of America. I may have to start getting our nonAmerican friends on here to send me educational materials from overseas. It is so hard because so many companies are aligning with this core curriculum while even a lot of states are coming on board against it. I don't know who is following it and who is not but I am very unhappy about it. That is  one of the things that is taking me so many hours because every time I think I found something good it turns out to be aligned and I have to start over again. Ugh frustrating!


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## Clash (Aug 19, 2013)

Are you talking about the Common Core Standards?


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## kimmidwife (Aug 19, 2013)

Yes Clash or the common cored standards as we like to call them.


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## Clash (Aug 19, 2013)

When my children were in public school they were both in the Enrichment classes and all just rolled on well, I had no idea about the Common Core standards butI knew the order in which they were learning math seemed different to how I learned, like they skipped around...a lot. 

They both were A students, then when my daughter was in 6th grade she started at the military school. It was public independent, a designation which meant they did get state funds but we also paid tuition. 

She started struggling in Math, not mightily, but her A's were becoming B's and I scheduled an appt. with the Math teacher. She said she had seen this decline for many since the Common Core was instituted. The military school didn't follow common core standards and a lot of the kids were struggling. The enrichment kids even more so because enrichment was all about creativity and abstract thought so deadlines and structure weren't as ingrained.

I hired a tutor for her and they started filling in the gaps of what the military Math teacher said the common core students often lacked and she caught up.

C was a more difficult case, as long as he was in the classroom he could follow the work at the military school but he couldn't retain it because his elementary math wasn't taught by laying a foundation then building blocks but by skipping around. So he may know how to carry out a math function but not how it may relate to something else because it wasn't learned in the order that it should've been.

One more thing, I remember my first college math classes, Alg. 101 or 102 then upward. I was surprised that it really isn't a core curriculum for college any more, there is mathematical decision making, mathematical modeling, statistics, pre-cal and the ALG classes are now 97-98 classes and do not count toward graduation.


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## kimmidwife (Aug 19, 2013)

You are absolutly right. I couldn't figure out why my son (3rd grade)was struggling so much with math. I pulled him out middle of last year and started him on Singapore math but we went back to second grade. With in a month he had mastered it and beyond. I have ordered the Singapore set through fifth grade. I am trying to get hold of old copies of the sixth seventh and eight grades. Anything 2012 and later of the Singapore American version has been common cored. The American version is called math in focus if anyone reads this and knows of anyone that might have it I am looking to purchase it.


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## Clash (Aug 19, 2013)

I have several friends that teach middle grades and they are using Singapore Math as well. I've looked through some of the text and all I can say is I so wish it would've been employed by teachers when my kids were younger. Both of the teachers I am referring to went outside of the classroom to get Singapore math instruction and activities. I'm not sure how they integrate it but have heard from the parents of some of their students that it has been awesome.


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## CrohnsKidMom (Aug 19, 2013)

Kimmidwife, I have a friend who homeschools.  Her 10 yr old is doing Gr 8 math, and has won numerous math awards for his age group Canada-wide. Some of the curriculums she has used on the past are; Art of Problem Solving; Centre for Innovation in Mathematics Teaching; Singapore Math; Math U See; Saxon; Life of Fred;and Making Math Fun.  She also gave me a list of books and websites, if you're interested (my kids are in public school, but my 8 yr old is quite good at math, so she passed this info on to me in case I wanted to "enhance" his public school math).  Maybe this will be of some use to you...

Sorry, just noticed Singapore was already mentioned...


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## kimmidwife (Aug 19, 2013)

Thanks Crohn's kids mom,
I would love the list!


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## my little penguin (Aug 19, 2013)

We used epgy  's program  through Stanford university for math with my oldest as an extra to public school. It went in the normal math sequence .
We stopped at the end of 6th grade math .
We may try to do something similar with DS since I don't like how math is being taught and they just have to relearn everything to the old way when they hit 6th grade anyways.


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## CrohnsKidMom (Aug 20, 2013)

Will get that list to you soon, Kimmidwife.


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## kimmidwife (Aug 21, 2013)

Thanks!
Hey everyone I wanted to tell you all I just started taking LDN myself for my two illnesses. I have fibromyalgia and Reflex Sympathetic Dystrophy (a nerve disorder). After two days on it I have seen an incredible improvement in my fibro. I just spent three weeks weaning off my other medication I was taking because I was having severe memory issues and extreme brain fogginess. I started the LDN on Monday. This morning for the first time in months I got out of bed without being so stiff and in pain that it took me hours to start moving. I won't say the pain is gone yet but in pain levels it has gone from a constant ten to between six to seven. With my old medication it took months to get to the level of staying around where I am after two days on LDN. The RSD pain has gone from about a ten and a half to an eight and a half. The old medications really gave me no relief at all from the RSD. I also started tumeric and a supplement called D Phenylanine which is supposed to help with pain and mood levels. What is my point to all this? I want to let others know that LDN really is helpful and we need to push doctors to look at it more for the kids on this forum that are still having so many struggles. I know a number of people have their kids on LDN including me and now from another source we get to see how helpful it is! I think the more testimonials there are from people here maybe the more willing other doctors will be to take a look at this option!


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## Farmwife (Aug 21, 2013)

:dance:YA for LDN!!!!!:dance:

I agree with you. Grace is also taking LDN for her EGID's and joint pains. 
Her joint pains have lessened in severity but sadly it's still spreading and causing lameness/weakness. 
At least she's not in the fetal position crying.:dance:

So happy it's helping you. I have Firbro also. Mine landed me in a wheelchair for 3 months. 
It was before it had a name and docs treated you like you had a mental issues (quiet crohnsinct:tongue instead.

I look forward to the day where LDN will be brought up on this forum right along with other meds to treat this blasted disease.:kiss:


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## Tesscorm (Aug 21, 2013)

That's GREAT news Kim!!! :banana:  I'm so happy you're finding some relief with LDN!  Hoping you continue to see more improvements!  Keep us posted!


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## kimmidwife (Aug 21, 2013)

I look forward to the day where LDN will be brought up on this forum right along with other meds to treat this blasted disease.:kiss:[/QUOTE]

FW, amen to that!!!!!!!

Tess,
Thanks!

My one issue with the LDN that I noticed the past two nights it has made me have crazy sleep. I took it earlier tonight to see if that will help.


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## Sascot (Aug 22, 2013)

That's great news.  Wish I could find a doctor willing to prescribe!  Think I will be fighting for that once the 6mp ends.


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## kimmidwife (Aug 22, 2013)

Sascot,
I even had to fight for myself to find a doctor willing to prescribe it. Luckily my new pain doctor was willing to give it a try!


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## kimmidwife (Aug 24, 2013)

Caitlyn's Update:
Good Evening everyone!!!!!
I hope you are all having a great weekend. I wanted to update everyone Caitlyn got home from camp on Thursday. Since she came home she has been complaing about how she gained so much weight at camp and she was so upset because she had worked so hard to lose all her steroid weight. I kept telling her you're crazy you don't look like you have gained a single pound. I to,d her but you do look like you grew. So she showed me that yes she had gained weight but then we went and measured her and guess what? She grew two inches over the summer!!!!!!!!!!!!! I am doing a happy dance because we thought she had stopped growing and was going to lose those inches that she should have been permanently. The doctor had estimated she should have been about 5"3 - 5"4 and she was only 5"1. She hadn't grown in over a year and a half. She is is 5"3! Happy dance !!!! :dance::dance::dance::dance::dance:

Ok now the girls have also told me I can reveal our big project that we are working on drum roll please: 
My girls are writing a book. It is a fiction/ fantasy book for teens. The heroine in the book has Crohn's disease. They have written about 140 pages. Once they are done we hope to get it published. We are very excited about it and hope it will raise awareness about Crohn's disease and show that teens with it can lead normal lives. I will keep you posted about the progress.


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## Brian'sMom (Aug 24, 2013)

Great news about Caitlyn. And I can't wait to read the book (since I knew her way back when )

What is the crazy sleep you had? Was it scary dreams? 
Does Caitlyn experience it?


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## DustyKat (Aug 24, 2013)

What an absolutely fabulous update Kim! :dusty::dusty::dusty: 

I am so, so, so, so, so happy for you both!  

Wow, a book!...that is brilliant! You must be so very proud of your girls and rightly so. Well done Caitlyn and sisters! Put me down for a copy! :thumleft: 

:mademyday:

Dusty. xxx


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## kimmidwife (Aug 24, 2013)

I sure will DustyKat!
Brian's Mom,
Just crazy vivid dreams. Caitlyn does not complain of it. I am super sensitive to medications. Thank goodness Caitlyn does not seem to have inherited that.


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## Tesscorm (Aug 25, 2013)

Great update, Kim!!!! :dance: :dance:

It's so wonderful to know she's doing so well after all she went through to get into remission!  Woohoo for and you!

Congrats on the book too!  What a great project!  Can't wait till it's done!


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## CarolinAlaska (Aug 25, 2013)

Great news on the growth and on the book!  Very exciting.  Our kids are in private school and I don't know how our curriculum compares.  My 14 yo uses Life of Fred for her math, and she does great with it, but I'm not sure if she is keeping up with the rest of the world...  She has gotten much better than she was when she was sick...


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## kimmidwife (Aug 25, 2013)

Carol,
I have been debating on the new life of Fred algebra book have you used it?


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## Jmrogers4 (Aug 25, 2013)

What great news :dusty::dusty:
Super excited for the book, that's fabulous.
Wow 2", she is taller than Jack now and weight to go along with the height.
Glad she had a good time at camp but I'm sure you are excited to have her home.


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## CrohnsKidMom (Aug 26, 2013)

Such exciting news!  I can't wait to read the book!


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## Johnnysmom (Aug 26, 2013)

We are doing the happy dance right along with you!!!:dance::dance::dance:

Fantastic news!!


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## Farmwife (Aug 26, 2013)

Wow a book.

:eek2:WAIT..........is there a forum in this book????:eek2:

All I ask is for her to use fake names like Dusty, Clash, Sascot and Jmrogers4.:rof:
Oh and the wino should be named............

 Oh, I'm glad she grew. 

:hug:


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## kimmidwife (Aug 27, 2013)

Out of curiosity, those whose kids are in supposed "remission" how often do your kids see the doctor and get bloodwork?


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## Jmrogers4 (Aug 27, 2013)

Well we are at 6 months now but GI has said if next labs are normal it would be once a year unless otherwise needed.  Unfortunately Jack seems to be having some issues now so we will be doing an FC now instead of at 6 mos in Oct. and go from there.


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## CrohnsKidMom (Aug 27, 2013)

My son just finished his Pred taper a few days ago, and is on MTX injections.  He has been having biweekly bloodwork done due to the MTX, but if all is well with the next results, they will consider him in remission and move the bloodwork to monthly.  We have been seeing the GI every 4 wks, but that now is extended to 4 months.


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## Catherine (Aug 27, 2013)

Sarah is in clinical remission but her aza level's are not in range so she is doing bloods every two weeks as still at the stage of increasing meds.


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## Clash (Aug 27, 2013)

C just had a normal FC result in the last 2.5 months or so and his GI mentioned something that made me think if his next FC result was normal then check ups would be every 6 mos to a year. I think the labs may move out too but not sure since they are for meds he is on as well.


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## Gmama (Aug 27, 2013)

Wow clash that's great news!!


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## Tesscorm (Aug 28, 2013)

Stephen's been in clinical remission since starting EEN at diagnosis and, until now, apptmts were approx. every 3-4 months and labwork at each appointment.  Since starting remicade in February, we've had three appointments, labwork was being done at each infusion.  Now, while no has actually said complete remission, MREs showed significant improvement and, at last apptmt, GI said labwork wouldn't be necessary at every infusion anymore and next apptmt isn't scheduled until after the school year (spring 2014).


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## Mehita (Aug 28, 2013)

That's great news!!


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## CarolinAlaska (Aug 28, 2013)

kimmidwife said:


> Carol,
> I have been debating on the new life of Fred algebra book have you used it?


Kim, I didn't know there was a new algebra book, but Jaedyn has only gone so far as prealgebra with Life of Fred, so the answer is no...


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## CrohnsKidMom (Aug 28, 2013)

Kim, I posted that list of math websites and books you were looking for over on your profile page... at least, I think I did.  I'm not much of a techie...


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## DustyKat (Aug 31, 2013)

Re: remission and bloods. 

Bloods - Since they are both on Aza, I'm not sure of Sarah's exact schedule but 3 monthly I think. Matt is at my preferred 2 monthly regime but I am still comfortable with 3 monthly. 
If they weren't on Aza I would be suggesting to them a full blood work up every 6 months that also included screening of vitamin and minerals that they have tested currently. 

Docs - Sarah is out to annual again with the GI but Matt's new GI likes to review his IBD patients every 3 months. Not feasible for us with Matt's uni schedule and the distance we need to travel so we have compromised on a 5/6 month follow up regime. He also touches base with the GP every 3 months for scripts, B12 injections, referrals and general review.

Dusty. xxx


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## lola99 (Aug 31, 2013)

Just got my crp test back and it went from 1.2 to .2 yipee.   Been feeling great for almost a year. Humira has given me my life back. I never thought I would feel normal again. Fingers crossed for continued remission.


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## ChampsMom (Aug 31, 2013)

kimmidwife said:


> Out of curiosity, those whose kids are in supposed "remission" how often do your kids see the doctor and get bloodwork?


No sooner than 6 months - last time we were just shy of a year.


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## kimmidwife (Sep 2, 2013)

Thanks all! I am going to give Caitlyn's doctor a call and speak to her about now often our follow ups should be now. 
Sorry I haven't been around a lot. We are working hard on our project and homeschooling.
I am hoping to finish up our project in the next month or so. I'll keep you posted!


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## Traceyjo88 (Sep 6, 2013)

Hi, 

I first saw this thread back in March and if I had joined the discussion then I would have been giving a vey different opinion.  My daughter, Devon, is 15, diagnosed with Crohns since Sept 2009, we have tried modulin, prednisolone, methotrexate, gabapentin, budesonide, aza etc.  Nothing seemed to work and Devon has had two bowel operations.  2012 was an awful year and we were in hospital six times over the year - twice for weeks at a time.  It felt as though the disease was calling all the shots and put great strain and worry on us all in the family.

At the start of 2012 Devon was still unwell but all of her tests were coming back normal. She had the pill cam, calprotectin and all the usual blood tests but nothing was showing - so we couldn't understand why she was so poorly.  She had abdominal pain but her main syptom was tiredness - extreme, unnatural tiredness which kept her bedridden most of the time.

Devon's medication (aza) was increased on a regular basis but nothing seemed to help the pains and exhaustion and we got into a pattern which seemed to be that Devon felt a little better for a bit, would do something (go to shops, go to school for a few hours, or even just walk the dog) and then would be bedridden for a few days while she recovered her strength.  

In May, Devon had a bit of an emotional breakdown - she felt she was missing out on life and was unable to do anything 'normal' and was distraught.  She said the worst symptom was the exhaustion now - more so than the pain and it was getting worse.  It was an awful time - I sat up all night researching her case and found stories from people who had had similar experiences, I found information on the side effects of her medication which included fatigue.  I sent our consultant a very emotional email explaining what had happened and asked that she have her dosage reduced.  I explained that either the aza wasn't working or it was causing the problems - either way we needed to do something.

The consultant gave me permission to take Devon off the medication for a few weeks to see how she went.  

That was over four months ago and Devon is now a completely different child.  Yesterday she returned to school for the first time in months.  She is eating again and has put weight on, she is going out, singing and laughing again and basically enjoying life - I believe she is in remission.   I suspect she was in remission after her last bowel op in December but the increase in medication since then has caused the problems.  I am not a doctor and I must admit that the medical team are not as confident as I am - they do not agree that it was the meds causing the problems - they are pleased with her progress but she does still get occasional pain and they say than unmanaged crohns can come back to bite us if we are not careful so we will see.  We have to go back every few weeks so they can keep a check on her, but for now I am so happy to have my daughter back I am praying that we will have this version of her for many years to come 

I hope Caitlin is okay and that she can achieve remission too - I wanted to share my story as a mum that did not believe there really was such a thing as remission - the stories on here proved me wrong and gave me hope.  I am so used to blaming crohns for everything it took me a while to realise there may be another explanation sometimes.  I hope this helps in someway.

Tracey

P.S.  Did you get more ducks?


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## CrohnsKidMom (Sep 6, 2013)

Tracey, Your daughter has been through so much.  I am so glad she is doing better.  I appreciate your story as our GI THINKS my son is entering remission.  He is currently on MTX injections, but we tried Imuran last May.  He was only on it a few days before he started getting a reaction.  He was getting fevers of 105F/40.5C, within hours of taking the drug each night.  Really scary.  The GI didn't think it was the Imuran causing the fevers, but I strongly felt it was.  He agreed to let me hold the med, and just like that the fevers stopped.  There is something to be said for mother's intuition.


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## Patricia56 (Sep 6, 2013)

I apologize but I didn't have time to read the whole thread. So my comments may be redundant.

If you mean can you have mucosal healing then YES I believe you can have remission. It will not last but how long you stay in remission is unpredictable and it can last for years.

How do you know you are in remission? Generally no abnormal labs, no abnormal bowel habits, few if any GI symptoms. I personally do not believe that most CDers have IBS - I think they have low level inflammation and need increased treatment if possible.

I think the problem isn't whether you can have remission. It's whether you are going to be able to tell when you have fallen out of remission/starting to flare soon enough to increase treatment and stop the flare early. With my son, you can't tell from his labs you have to watch for changes in bowel habits (constipation not diarrhea) that include sudden episodes of bloody stools and perianal disease which isn't painful.

Regarding frequency of lab/visitis -

We get labs every 3 months (more often if there's a problem) and see his ped GI every 3 months even when in remission.


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## M2M (Sep 7, 2013)

we certainly felt my daughter was in remission since October of 2011; which is when she was weaned off Entocort.  Since that time she was only taking the MarketAmerica Isotonix multi vitamin, OPC3, Aloe.  She also was taking Standard Process Boswellia.  I was taking her to the doctor every 6 months and she had blood work probably 2 - 3 times between the appts.  That way her doctor told her if she was low in something..one time it was Iron and then Vitamin D.   At her last apt in August her CRP # went up to 20 and so she scheduled a CT scan which does show some inflammation in her lower intestines.  They moved her colon'py up to this Monday.  He told us in August she may just be able to go back on Entocort; although he does keep talking about Remicade.  I don't see the sense of going to Remicade when at this point she really isn't feeling bad at all??  
she had a bad reaction to Pentasa and 6MP; so she can't take those.

there is such a thing as remission.. Thank God!


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## my little penguin (Sep 8, 2013)

The point of remicade is to stop her body from doing damage.
If she had inflammation on her ct scan then she was not in remission.
Her scope on Monday will probably tell the damage a little better unless its confined to her small bowel.
Treating in a reactionary way only tries to stop the damage after it has occurred in which case scar tissue and other issues can happen without you even realizing it.
Feeling bad is not a good indicator of how serious the damage is.

You only have so much bowel and keeping it as healthy as possible for as long as possible is the goal .

Not an easy decision when the outside ( how she feels) does not reflect the inside( inflammation on ct )

Good luck


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## kimmidwife (Sep 8, 2013)

Hi Tracey,
Sadly we did not replace the ducks. It was to heartbreaking losing them the first time. Caitlyn is still doing well thank Goodness. We are praying for a great year this year! We are making progress on the book over 150 pages written. It's hard to keep the creative juices flowing but we are sure trying. Keeping our fingers crossed that it continues to go smoothly!


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## kimmidwife (Sep 13, 2013)

Hi all 
Just wanted to check in. I know we had some discussion about magnesium a while back. I wanted to tell you if your child does need to supplement be very careful which one you use. Some of them can cause very bad diarrhea. I am on magnesium for prevention of kidney stones and my doctor recommended a supplement called Beelith. It has the more gentle form of magnesium and vitamin B in it. Haven't had any problems with it. Hope all are doing well and having a good day today.


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## Gmama (Sep 14, 2013)

my little penguin said:


> The point of remicade is to stop her body from doing damage.
> If she had inflammation on her ct scan then she was not in remission.
> Her scope on Monday will probably tell the damage a little better unless its confined to her small bowel.
> Treating in a reactionary way only tries to stop the damage after it has occurred in which case scar tissue and other issues can happen without you even realizing it.
> ...


Thanks for posting this MLP. When my son was diagnosed it was so hard to wrap my head around all of the potential meds that he would have to take thinking about ALL the potential side effects. This darn disease is so difficult to manage since there is no cut & dry treatment that works for everyone.


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## kimmidwife (Sep 21, 2013)

Hi all,
Just wanted to say hello. Caitlyn has been a little under the weather this week. Every year at this time she gets a flare. This year so far seems to have been the most mild flare since diagnosis. She was diagnosed September 20 2008 four days before her 11th birthday. She is about to turn sweet sixteen!!!!! I can't believe it my baby is growing up. It is going into our sixth year since diagnosis and we are finally in remission (we hope, fingers triple crossed)!


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## DustyKat (Sep 22, 2013)

Fingers, toes and everything crossed Kim! :goodluck: 

Dusty. xxx


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## kimmidwife (Sep 24, 2013)

:bdayparty:


Today is the big day! Caitlyn's sweet sixteen!!!! My baby is growing up!!!!!!


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## Clash (Sep 24, 2013)

Woohoo:dance::dance::dance::birthday2::applause:


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## DustyKat (Sep 24, 2013)

EEK! She surely is! 

Have a fabulous 16th Birthday Caitlyn!







Dusty. :heart:


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## Jmrogers4 (Sep 24, 2013)

Happy Birthday Caitlyn!
:birthday2:
Hope you have a fabulous birthday!


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## Catherine (Sep 24, 2013)

Happy Birthday Caitlin.


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## Tesscorm (Sep 24, 2013)

Wow, HAPPY HAPPY 16th BIRTHDAY Caitlyn!!!

:dance: :bdayparty:   :dance:

Hope the year is filled with great things!


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## upsetmom (Sep 25, 2013)

:birthday2:

Happy Birthday Caitlyn


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## CrohnsKidMom (Sep 25, 2013)

Happy Sweet 16, Caitlyn!


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## Farmwife (Sep 25, 2013)

HAPPY LATE 16th B-DAY!


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## CarolinAlaska (Sep 25, 2013)

Happy Birthday, Caitlyn!  Great to hear!


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## kimmidwife (Oct 13, 2013)

Caitlyn just added her sweet sixteen trip to disney world album for me so everyone can see it. She also edited my signature.


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## DustyKat (Oct 13, 2013)

Oh wow Kim, what fab pics! And I love the new signature......well done Caitlyn! :heart: 

Dusty. xxx


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## upsetmom (Oct 13, 2013)

Nice pictures! Thanks for sharing.


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## Jmrogers4 (Oct 13, 2013)

Great pictures!  Looks like everyone had a fun time.


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## Tesscorm (Oct 14, 2013)

Great pictures!  I love Disney World and it looks like everyone had a great time!


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