# Izzi update...



## izzi'smom

*Izzi's much ado about nothing *

So she is still doing fab. She is down to a month between labs (she asked last week when she was going again...said she missed the phlebotomist :ylol

Again, this makes me SUPER reluctant to concur that surgery is necessary. Her local GI offered to scope her (I have concerns that we are taking out a healthy looking colon) and I am waiting on a date-late July or the second week in August. 

He agrees that the surgery may not be necessary yet while admitting that her Boston docs are more experienced with Tacro/surgery.

I just spoke to the mom of the 7 yo that had the surgery this spring...and she is on 6mp post op-as we all know surgery is not an end all to Crohn's...so what is the point of removing a healthy kids colon and them still needing drugs??

So we are enjoying our summer...hitting the beach and every park we can find...while I am in denial about her disease......because I can be while she is practically asymptomatic!!


----------



## Lisa

Great to hear Angie!!!

Hey - what are you doing either Thursday or Friday??? Thinking of maybe heading to the ZOO!


----------



## DustyKat

Woohoo! This makes my heart sing!!! :heart:

	
	
		
		
	


	




:heart:



I can well imagine your reluctance Angie...:hug:...I would be the same and would also need the evidence to ensure that I was making the right decision, it is too much to expect us to go into the heartbreak with anything less. 



Enjoy and rejoice in the Summer! 

	
	
		
		
	


	





Dusty. xxx


----------



## Mom2oneboy

So glad you guys are having a good summer!  Enjoy.....you've earned it


----------



## polly13

Delighted to hear this update Angie - enjoy the summer.


----------



## Tesscorm

I am so happy to hear Izzi is doing so well!!!  :banana:  :banana:

I can certainly understand your hesitation at the surgery and it certainly can't hurt to have another look!  

Keep on enjoying the summer!!!  And I hope the scopes show that surgery is NOT needed!!


----------



## Farmwife

WOW great news. Enjoy you summer.
 As for the upcoming surgery that's only a call you and doctors can make. I feel for you. Your a great mom with a heart breaking choice. I hope all goes well.

Farmwife


----------



## crohnsinct

Yay!  So glad you guys are enjoyning the summer!!!!:soledance:


----------



## dannysmom

Thanks for sharing this great news! Enjoy!!!


----------



## QueenGothel




----------



## LilyRose

Hi there,

I was so happy to see your post that Izzi is feeling good and enjoying the summer. That is really great news.

And I can fully understand your reluctance about surgery. All you can do is surround yourself with all the best information and advice and make your decision from there. 

Crohn's management seems just full of difficult decsions, none more so than your current situation.

Wishes you the best and Izzi many more years of feeling fantastic.

Take care,
LilyRose


----------



## Lisa

I had the absolute pleasure of meeting little Miss Izzy yesterday!!!  SO great to see her.......and I think we all had a good time at the zoo....

Angie - any objection to posting the picture taken by the lions of all 3 kids?


----------



## izzi'smom

None at all pasobuff ...and thanks to all for the kind words!! Sadly my denial of her disease means I don't pop in here as often AS i should...but I still love you all!


----------



## DustyKat

Grab the enjoyment/denial/whatever with both hands Angie and make the most of it! We aren't going anywhere!  

Dusty.


----------



## Crohn's Mom

Angie I'm so glad to hear that Izz is doing so well, and that you are taking advantage and enjoying your summer together !! 
Denial is a river I love to swim down myself..:ybiggrin:


----------



## izzi'smom

Oh, and our CRP??? 1.4      After being in the 60's a few months ago, and not being "normal" for 18 months.


----------



## DustyKat

Now that deserves a happy dance!........







Dusty. :heart:


----------



## izzi'smom

Did a pile of research on PALEO last night. Considering combining with shiropractic (we are already going), acupuncture, probiotics, krill oil, bone broth, d3, and ldn. Her doc isn't thrilled with the lack of studies done on LDN, but I am hoping to meet with him and convince him to try this week. 
No more sweet denial for me...time to derail the train before we reach our surgical destination.


----------



## David

I like your thinking!  

What's the story on bone broth though?  I'm not familiar with that one.

I'm super pleased to hear all is going well


----------



## crohnsinct

Go Get Em Angie!


----------



## izzi'smom

http://www.chesapeakegardens.com/articles/Kaayla.Daniel.gelatin[1].pdf
I am sorry I didn't find Crohn's dad's blog before now...he has a lot of info. 
With all due respect, while I am not certain any of this will cure her, it may help and are unlikely to hurt, which is why I chose the combo that I did. I am concerned about her taking the Krill oil (she didn't like fish oil vitamins) and have a little trepidation regarding acupuncture. Time will tell!!


----------



## QueenGothel

Prayer sent.  You go momma.


----------



## Farmwife

izzi'smom said:


> No more sweet denial for me...time to derail the train before we reach our surgical destination.


*NOW your talking country talk*.:ybiggrin:
 I knew IT!!!! 
You city girls are just country girls in hiding:wink:

I wish you all the best. Keep us updated on what you'll choose.
Farmwife:heart:


----------



## Tesscorm

Good luck Angie!!!  It certainly can't hurt to try and it may very well help!!!  Thinking of you! :ghug:


----------



## izzi'smom

Welll farmwife, don't ya'all think I'm a a horse of a different color. I growed up in the lawn-mower-ridin', shit-kickin', hay baling' country myself. We had a big honkin' barn and I did some cotton-pickin' boot scootin' til I was plumb tuckered out at night. I better go find my rollin' pin so I can take care of that durn no-good ex-husband of mine before he starts bitin' at the bit...


----------



## Farmwife

:rof::rof::rof:I knew you were country!!!!!:rof::rof::rof:

As where I grow up a PURE BLOODED CITY GIRL. 
I didn't even know how to tell the bull from the cow. (Not a word crohnsinct)
 I saw my first dear at the age or 19. I told my husband that's the biggest mouse I had ever seen. He laughed so hard we almost hit the barn.:lol: ( was kidding of course, NOT A WORD crohnsinct)


:hug:Farmwife


----------



## izzi'smom

lol @ farmwife 
I used to drive for work and had an intern ask me (completely straightfaced) if the red cows were where strawberry milk came from. She also screamed when a woodchuck crossed the road in front of our vehicle. 
We were only 4 miles from town...but we played in the creek (pronounced "crick" for you city folk), worked at the farm market picking corn and berries and baling hay, and caught frogs, minnows, and lightening bugs. I live in town now and am surrounded by neighbors, but sometimes I still miss the country (not in the winter, though )


----------



## izzi'smom

Oh, and I hope you figured out to tell the bull from the cow. Tough to milk those bulls


----------



## Farmwife

I count myself very blessed to bring up my two children on a farm. 
I wish I would have lived on a farm as a youngster.

:hug:Oh, by the way.... all you have to do is milk a bull once:eek2:
 and you'll never do it again.:yfrown:

Stupid bull won't leave me alone.:lol::ylol2::lol:

Farmwife


----------



## AZMOM

I'm ecstatic about that CRP!

And yes, y'all can guess where I grew up (she said while picking her teeth with a long piece of alfalfa ).

J.


----------



## crohnsinct

Oh No you gals are hilarious!  I just knew with that tude on you farmwife that you had city in you somewhere!  

How come every one is jumping on the country wagon?  Any city girls out there to join my gang? 

I grew up in the city surrounded by nosey neighbors. When my country friend and I were walking a rat crossed our path and she screamed.   We played in the fire hydrants sprays in the summer and smashed roaches on our walls.  I live in the burbs now and it is too quiet for me so we moved to a busy street. I miss the city but only in the winter (the landlord shovels for you).  Oh and its is technically New England here and my house was built in 1835 so we have two barns on the property although too scared of the residents in the barn to go in...can I be an honorary country gang member?


----------



## Malgrave

I am a new here and I have just read Izzi's story with great interest since it reminds my son's story so much till early May (maybe I will come back to it later...).

But what happened between early May and beginning of July? I cannot find this anywhere. What has changed Izzi's situation so that she is feeling so good at the moment?


----------



## DustyKat

Hi Malgrave and :welcome: 

I hope you stay around and tell us your own story.  

I will let Angie fully fill you in on what happened with Izzi but in a nutshell she has commenced taking Tacrolimus. The issue with this is it is a medication that can't be used for extended periods of time. 

Dusty. xxx


----------



## Malgrave

Thanks a lot :ysmile:
I will tell you our story when we are back to home computer (currently, again , in the hospital due to pneumonia!!!)


----------



## Tesscorm

Not to worry Crohnsinct, another city girl here! :tongue:  Although, as a kid, I did catch tadpoles (they never did make it to the frog stage! :lol, caught our own Praying Mantis' to race (deathly afraid of bugs now - can't believe I touched those things!) and slept in tents in our backyards (but NOT out of necessity! ).  'Country-ish moments' in a city kid's life!  

Although, when I was 8, I spent the summer in Portugal and half of that time was with relatives who lived on a farm in a very small town - to this day, these are some of my favourite memories - jumping into a pile of hay (rudely learning those little 'bud' things are prickly and stick to everything!), caring for the runt of a rabbit litter (it died - first time I realized God wouldn't answer all my prayers!  ), collecting the eggs, playing in the forest with all the other farmers' kids and the _smell _of the forest, etc.  The other half the trip was in southern Portugal, minutes from the beach, etc. - wonderful too, but, the 'farm' memories are so much more vivid!

Was an experience I truly wished I could have given my children but, relatives are all older, different lifestyles and my kids don't speak Portuguese... 



Welcome to the forum, Malgrave!  I hope your son isn't feeling too unwell now!  I'm sure you'll find lots of information, advice and support from the parents (and all members) here. 


Malgrave - sorry, just saw your recent post!  I'm sorry you are in the hospital now!  Hope he's feeling better soon!


----------



## izzi'smom

Malgrave, I am so glad you found us here.  There is a large community of wonderfully supportive people; I am hoping you are feeling better soon and am looking forward to reading about your son's story. Here is the missing link to Izz's story. 
http://www.crohnsforum.com/showthread.php?t=36003


----------



## Clash

izzi'smom said:


> So she is still doing fab. She is down to a month between labs (she asked last week when she was going again...said she missed the phlebotomist :ylol
> 
> Again, this makes me SUPER reluctant to concur that surgery is necessary. Her local GI offered to scope her (I have concerns that we are taking out a healthy looking colon) and I am waiting on a date-late July or the second week in August.
> 
> He agrees that the surgery may not be necessary yet while admitting that her Boston docs are more experienced with Tacro/surgery.
> 
> I just spoke to the mom of the 7 yo that had the surgery this spring...and she is on 6mp post op-as we all know surgery is not an end all to Crohn's...so what is the point of removing a healthy kids colon and them still needing drugs??
> 
> So we are enjoying our summer...hitting the beach and every park we can find...while I am in denial about her disease......because I can be while she is practically asymptomatic!!


Sorry I haven't commented in quite awhile but I have been keeping up, that is such great news that Izzi is doing well!! I hope you all have a fabulous summer!:thumleft:


----------



## Farmwife

Welcome Malgrave,
  I hope all goes well and your out of the hospital soon. I look forward to hearing your story soon.

Now on to crohnsinct....
 we country girls don't have "gangs" we have "pot lucks". 
Your friend jumped when she saw that rat because our cats kill them before we see them in the country. 
I'll take cockroaches on the walls over wolf spiders. You need to grab a BOOK to kill those things. 
By the way, your house sounds wonderful. Is it nice? PM me I love OLD HOUSE! 
We do need proof that you have barns; send some picture to prove it and maybe we'll let you in the country group.

Framwife


----------



## Clash

Ok I would gladly trade in my quiet neighborhood with 25 min trip to take my ds to school, go to the grocery store or civilation for a nice home/townhome in a gated mixed use development in the big city!! I have never lived in the city but before C was diagnosed we were making plans to move toward one of the smaller cities around Atlanta and I spent my days looking online at gated communities and mixed use developments and ahhh....now I spend my days on the forum! LOL but you guys are way better than that 3 story within walking distance of that mall!! LOL


----------



## Clash

I would take the cockroaches and wolf spiders if we could get away from the gnats and mosquitos. We're not really as friendly as everyone thinks we are down here...we ain't wavin' at ya'll we tryin' to get these darn gnats outta our eyes!!! LOL


----------



## Farmwife

I'm SO SORRY Angie that your thread has turned into "country vs city". My bad!

Farmwife (Country life RULES) 



Your right Clash, I hate the "little bugs" the most.
Sorry Angie I did it again!:duh:


----------



## izzi'smom

Please don't apologize: I love it!! "Send proof of your barns"...what is this, a ransom note?! lol!


----------



## Lisa

umm....is this country enough...the view from just up the road from my house.....:ylol::ylol:


----------



## DustyKat

> We do need proof that you have barns; send some picture to prove it


Too easy crohnsinct! I will photoshop one of those Sesame Street barns for ya and ka ching...barn meets city! 

Dusty.


----------



## Farmwife

Pasobuff- That's beautiful! 
 A picture of where I live would have old barns, cows butts sticking up as they feed, female cats chasing the males away, your dogs rolling in your front lawn in God knows what. On second thought I'd rather have your scenic country view. 
I bet you pay for it to!!! 

Farmwife


----------



## DustyKat

That's mighty purdy Paso.


----------



## Lisa

And to TOTALLY hijack this thread....the view off my back deck....


----------



## izzi'smom

Pasobuff...tell me again why have I not been to your neck of the woods yet?? Beautiful!!


----------



## crohnsinct

Paso...that is really pretty and right about now I could use that space so no one would hear my screams of despair over darn computer viruses that have taken down my home p.c.. If I scream here they would have the whole PD and Fire department knocking down my door. 

Would take a pic out my NYC window but you wouldn't see much but the smog!  

Barn pics to come and in true ransom fashion I will put O in front of them to prove they are mine!


----------



## Tesscorm

LMAO :rof:  I can just picture poor O tied to the barn doors!


----------



## David

Angie, I just found time to read that paper on broth you linked, thanks for that.  It was quite interesting.  Do you make broth from marrow bones?  How do you do it?  I think that our movement away from utilizing all parts of the animal (I'll take 10 pounds of chicken wings please!) has really affected our health so this kind of stuff is super interesting to me.

Thanks!


----------



## izzi'smom

Ummm...I have always boiled my leftover bones to make soup. Chicken/turkey carcass, or large cuts of meat. You can get large beef bones from the butcher. I generally boil them for about an hour, but that is for bones with a bit of meat on them meant for soup. I also add remnants-the parts you would otherwise toss-from veggies-onion, carrot, beet, or celery ends-for extra flavor.  I don't tend to do it much in the summer, but I just bought a bunch of grass fed/pasture raised meat at the farmers market...I will post when I make it!


----------



## Twiggy930

A few weeks ago I made bone broth in my slow cooker.  Used large beef bones.  I browned the bones in the oven for about 1 hour then put them in the slow cooker with some veggies for about 30 hours!  It was delicious.  Still have some in the freezer.  I find it hard consume large quantities of it in the summer.

I have had a hard time figuring out how my son could do a Paleo diet.  He seems to struggle with veggies and I'm scared to give him nuts, so that would leave... MEAT!  I did, in a frantic moment, buy everything to make some paleo bread.  Ended up spending a bundle on the ingredients and when I calculated it each loaf would cost me $15!!!  Still haven't made the loaf...  :shifty:  I have made paleo pizza (cheated and added cheese) and snickerdoodles.  Best success has been the flax meal wrap recipe that I found in the Wheat Belly book, although I haven't tested them on my son yet...  They are a great alternative to bread for sandwiches.

Keep us posted on how the paleo eating goes.  I am very intrigued.


----------



## izzi'smom

Farmwife I am waiting for that pic of cows butts!!!
Twiggy, I decided that, at least to start, I am going to do the diet simply. I am not going to try and replace items that we are not allowed to have except in special circumstances (ie a birthday party I would find a PALEO cake recipe). Did you make a meatza or what did you use for the crust?
We have never been big on sandwiches anyway. 

The kids did fruit (and one of the three leftover packs of pop tarts) for breakfast; salad, fruit, and chicken for lunch (Izz had a molasses cookie from grandma), and beet greens with onion, garlic, and andoullie sausage for dinner, plus they ate broccoli and green beans from the garden as I was blanching/freezing them and blueberries for dessert (and a s'more). So we cheated at each meal, but I am hoping we progress lol. I may also let Izz have milk...she LOVES it and doesn't drink much else. 
DOes he do OK with well cooked veggies or no?


----------



## DustyKat

Oh no! Not again! Argh! :lol: 

I had to google beet greens...we don't eat those down under! :eek2: I thought it must have been silverbeet you were talking about! 

Dusty. :confused2:


----------



## Farmwife

DustyKat I have to admit even in our own country their's things southern people eat things I've never heard of or think it's strange. I've heard and some one from the south in the USA can tell me if I'm wrong but y''all put cheddar cheese on your apple pies. 
We have a family of Hispanic decent that takes our cows HEAD after we butcher it.
 I don't even what to know what they make out of it.

Angie the picture of the cow's butts will be coming soon. :lol2:
I just want to have the right kind of lighting so you can get the true essence of what I see every day.
 I also see how baby calfs are made but your not getting a picture of that. 
Is it wrong when your three year old can tell the bank teller how cows are made?:yfaint:

Farmwife


----------



## Tesscorm

Hey Farmwife, I've often seen menus here that offer apple pie with either ice cream or cheddar cheese???  The ice cream is a no-brainer but never tried the cheese and can't really see the combination?? (But, it's probably good! :lol


----------



## Farmwife

Strange, it must not be a Michigan "thing". 
Whoever looked at a yummy apple pie and said "Oh, lets put cheese on that"  must have been different.


Farmwife


----------



## crohnsinct

I have seen it on menus but can't remember where...south maybe? In the interest of science I will try it and report back.   

Is cheese in or on anything ever bad?


----------



## crohnsinct

Farmwife said:


> Whoever looked at a yummy apple pie and said "Oh, lets put cheese on that"  must have been different.
> 
> 
> Farmwife


Probably some dairy farmer trying to hawk their wares...crooks!


----------



## Farmwife

crohnsinct = :ybatty:


Farmwife


----------



## izzi'smom

LOL @ you two!!
My mil likes a slice of cheese on the side of her pie. 
Farmwife, I am expecting the right lighting; preferably mid morning or early evening to avoid the flat affect due to the harsh mid day light. These cows need be looking their best for these portraits (and I am shocked to discover you don't already have a portfolio of posting-worthy museum-quality images!) I am submitting a write-up to the ASPCA regarding this travesty. 
...and I hear crickets chirping regarding crohnsinct's barn pics also...perhaps you are shopping for said barn?? Hmmm??? Don't forget, we can tell if you're lying via Google Earth. No photoshopping!!


----------



## DustyKat

Now way! Cheese on apple pie! uke_r: 

I'm still recovering from the fact that you guys squeeze it out of a bottle! :eek2:

Dusty.


----------



## Farmwife

First of all that's called cheeze wiz Ms. DustyKat and it's a national icon!!:us_flag:
I'm not going to defend it more, because it's closer to plastic then food. :facepalm:


Ms. Angie I'm shocked you didn't tell me what shutter speed you wanted me to use. You must be slipping.:ybiggrin:

I have to go. I'm eating a s'moes. I used marshmallow cream instead.
 Easy to spread and no fire involved.
 My hubby says bad things happing when I'm around open flames.
 Don't ask.:runaway:


Farmwife


----------



## izzi'smom

You mean marshmallow fluff? Another american tradition! S'mores aren't the same without burning, molten sugary dripping, carcinogenic marshmallows...you're missing out! 
Oh, and you can autofocus


----------



## crohnsinct

On no!  :rof: 

More like trying to clean the crap out of the open barn so I don't look too trashy (zip it Farmwife)!  We had the youth group tag sale here let's say a several weeks ago (September) and we are still cleaning out the left over crap.


----------



## Farmwife

crohnsinct said:


> On no!  :rof:
> 
> More like trying to clean the crap out of the open barn so I don't look too trashy (zip it Farmwife)!



I WASN'T GOING TO SAY ANYTHING!!!!!:mad2:
Type it maybe.:shifty-t:


Farmwife


----------



## crohnsinct

FLUFF!!!  Should we introduce Dusty to Fluffernutter sandwiches? Yum!  Another good (although not the most healthy and nutritious) use of Fluff is to blend a jar with a block of cream cheese and voila fruit dip! I use it in a trifle with angel food cake, strawberries, fruit dip, blueberries repeat.

Hey Farmwife how does the chocolate melt if you use marshmallow cream? And yes we all know...no open flames around hay..got it! 

So O said in the interest of anonymity she doesn't want her pic posted on an open forum.  Ummm yeah sure cuz there are lots of ex city girls in our town with a daughter who has crohns and is a swimmer who just so happen to have a first name that starts with "O"....pics are on my page and only my friends can see them...hahaha nice way to bribe people to be my friend eh?

Oh yeah and sure stalker types are just hanging around Crohns forums to read about poo!


----------



## Tesscorm

My daughter loves to make _easy, instant_ s'mores...  Put the s'more together (unsoftened marshmallow, piece of hard choco between the two crackers) and put in microwave for around 10 or 15 seconds(?)... voila... melted marshmallow and chocolate in cracker and no flame, gas cooktops, etc. 

Not sure if any of you have Loblaws near you (grocery store chain) - they sell a s'more kit prepackaged with all ingredients!


----------



## izzi'smom

crohnsinct said:


> On no!  :rof:
> 
> More like trying to clean the crap out of the open barn so I don't look too trashy (zip it Farmwife)!  We had the youth group tag sale here let's say a *several weeks ago (September) *and we are still cleaning out the left over crap.


 :ylol::ylol::ylol::ylol::ylol::ylol::ylol::ylol::ylol:

...and I am wondering what good a cold s'more is. It could be argued that it may be renamed n'more, as there is no ooey gooey goodness. MICROWAVE s'mores? HOGWASH!!! (says the crunchy mama that doesn't own a microwave lol!)

Hmmm...annonimity? (I am fairly certain I butchered the spelling). I think it is too late for Izz. She will go down in history at school for her bowel habits being google-able. oo: Could be worse. Maybe I should start calling her I. :devil: Wait, that would be awkward. :shifty-t:
(A co-worker recently googled my name and found a bunch of scantily clad photos...and she could have passed for me. )


----------



## Farmwife

Ok crohnsinct you do have barns. :thumleft:
Thank O for taking the pictures.  
Nice touch with the news paper!

As far as joining the "country" club. I'm not sure.
Other's will have to vote also. 
I mean they're to pretty too be working barns. 
Still they are barns.
O did stand out there in embarrassment 
holding a news paper. utahere:

OK, I vote ....................................................................................IN
However majorities rules.:ghug: 
Only time will tell. We'll give it a week.

Angie if you want me to put this on my thread I will. 
But this thread did kick off the "Country vs. City" debate

Since this thread is about Izzy how has she been?
How's the diet?
 I'll read your answer as I eat my cold s'mores.:rof:
Farmwife:hug:


----------



## AZMOM

Alright my dear Yankees , shall I post you a GREAT recipe for apple pie made wih cheddar so you can save your slices for grilled cheese?



All kidding aside, I do have one. 

J.


----------



## izzi'smom

Izzi is FAB! We met with Dutch (Mike), his son Matt, and family along with 2 other IBD families at a local park/playground today. (Yup, I am turning into an IBD social butterfly!) It was great to chat with other IBD parents IRL and we look forward to meeting again. (Matt is wonderfully articulate regarding his disease...he is amazing with dates/disease progression...puts my notebook to shame!!)
Her scope is Friday...her dad has to prep her solo as I am working...wish him luck...and hoping for ZERO inflammation 
Off to look for these "supposed" barn photos...


----------



## crohnsinct

YAY Izz is fab!  Yay IBD friends!  :emot-dance:


----------



## Tesscorm

Gosh, I feel like I keep up fairly well but...  one day off the site and I'm lost...  WTH did the cold s'mores come from??  I must be skimming too quickly!  Farmwife - get a microwave and you'll never have to make do with a cold s'more again! 

Crohnsinct - So you do have barns... x 2!!!  Hmmm, are you sure you're not really a country girl?  And, LMAO with the newspaper detail! :rof:

Angie - I'm so happy hear that Izzi continues to do well!!!  Sounds like you're having a fantastic summer!  Love it!!! 

Julie - apple pie with cheese???  Is it low-cal?  LOL  How is it that a Crohn's forum is seriously testing my diet willpower because the 'food discussion' seems to include lots of s'mores, beavertails, fruity pebbles, deepfried oreos, caramel slices, etc.! LOL


----------



## Clash

Ummm... from the south here...this Southern belle has never had the inclination to but cheese on Apple pies nor have I noticed it as a menu item...don't get me wrong I love cheese just not on apple pie. Maybe it's the Wisconsin folk that do it, they probably have a cheese abundance?:ylol:


----------



## Dutch941

Hey all, it's Mike/Dutch's wife, Hayley, hijacking his log-in (hi honey!). I just wanted to pop in and second Angie's post that it was really nice meeting some other IBD families. It was funny because we didn't quite know how we'd spot everyone (for some reason I thought Izzi was 7 so I was looking for an older kid) but then our 11 year old heard someone say "Dutch" and "Matt" and came back to report to us that he thought he may have found the group. In the car afterwards we were talking about how reassuring it was to talk to people going through the same thing (and being equally as persistent with the doctors). 

By the way....microwaved s'mores?!? I believe that should be against the law!!!


----------



## Tesscorm

Hi Hayley!

It's so reassuring to have others who understand your frustrations, worries, etc.!   The forum is great and, if Stephen were younger, I would be so happy if he was able to make friends who would also understand his own frustrations and worries.  Nice to hear that you were all able to meet and enjoy the day!

Microwave s'mores???...  had the same reaction as you but she's made me a couple and gotta tell you...  they ain't bad! :ylol:


----------



## Farmwife

Hi Hayley,
  It's great to hear you all had a good time. 

I once thought about crohnsinct and I meeting up with our kids somewhere, but......what would we do?
 Maybe I could teach them the fine art of cow tippin or country cow skiing.

Farmwife


----------



## Tesscorm

OMG, just some of your homecooking would be a treat for them!  (Sorry, Crohnsinct, couldn't resist!  :lol


----------



## Tesscorm

By the way, Farmwife, I was afraid to ask what 'cow tippin or country cow skiing' are!!!


----------



## Farmwife

NO!!!! Tesscorm that would just be mean!!!!
It's like eating......a T-bone steak one night.
Then........being served baloney the next night.
(Sorry, Crohnsinct, I couldn't resist!:lol2

Farmwife


----------



## Tesscorm

I have to be fair here...:blush:  my family has had it's share of baloney-type dinners! :lol:  

We eat french fries only once in a while at home and, when we do, it's usually a 'rushed' night so... I take out my bag of processed frozen fries and bake them.  One day, when Stephen was approx. 7 or 8 years old, at the peak of his pickiness, when ANY change from the norm was highly suspect to him :hallo3:, my husband decided to make REAL, fresh french fries.  Stephen took one bite (gagged simply because it was 'different' :yrolleyes and asked 'WHAT are these?'.  When we explained, he looked at us incredulously and ask 'You mean they didn't come from the fridge like they're supposed to?'    And so began my excursion into The Food Network!


----------



## Farmwife

I also have to admit to crohnsinct 
that once in a while my cookies come from..............
a refrigerated cookie log. 
There I said. 
I don't have to live in shame anymore.

And once in awhile.......................... 
not all the cookie log makes it onto the pan:ghug::ghug::ghug:
Say what you want to but I don't care.


Farmwife


----------



## crohnsinct

Cyber bullies!  LOL anyway!  I would go cow tipping just as long as no one mistakes me for a cow!  And isn't that refrigerator cookie log for eating raw?  Had no idea you were supposed to bake that stuff.  Oh no...are we going to send Dusty into nutritional shock again?


----------



## Farmwife

Tesscorm said:


> By the way, Farmwife, I was afraid to ask what 'cow tippin or country cow skiing' are!!!


I could tell everyone but Angie has to give me permission
 before we hijack her thread any further.


SORRY, were doing it again!:ybatty:

Farmwife

DustyKat perhaps we need a thread called "Much ado about NOTHING"!
And we only bring it up if there's something funny going on 
or if useless debates have to go on. It's up to you guys. 
I think better in type than I do in person.


----------



## Tesscorm

Farmwife said:


> DustyKat perhaps we need a thread called "Much ado about NOTHING"!
> And we only bring it up if there's something funny going on
> or if useless debates have to go on. It's up to you guys.


I was actually thinking the same thing!  *I like your title!!*  And, just to prove to Dusty that us Canadians are not all cavemen (we do have the Stratford Shakespeare Festival), _*eh*_!  Some other titles that may be appropriate...

All's well that Ends well -     ... _Ends_... something we've all become quite familiar with!

Taming of the Shrew - what our kids' GIs are thinking as we leave the room! :emot-nyd:

Twelfth Night - that last sleepless night before we become the 'Shrew' :hallo3:

Measure for Measure - use your imagination!:biggrin:

Tempest - the story of our lives! :runaway:


----------



## crohnsinct

Agree!  Insane minds think alike!


----------



## izzi'smom

fARMWIFE, if you ask for permission to make us all laugh with a thread hijacked off course I am going to come to MI to hit you over the head with your own rollig pin!!

I will be back tomorrow to respond to all of your funnies (I just typed a long response that I promptly deleted accidentally and I am not typing the dumb thing again tonight!)...but thank you all for making me lol tonight!!


----------



## crohnsinct

And back to our forum angel Izzi....


:goodluck:

Wishing Dad and Izzi lots of luck with the prep today and with scopes tomorrow...no inflammation, no inflammation, no inflammation!


----------



## DustyKat

Lalalalala...I'm not listening! s'mores, fluffernutter, liquid cheese, marshmallow cream...my brain is mashed! And don't worry about putting me into nutritional shock crohnsinct I am already there! eh! :yfaint:

Oh man I am so glad I don't live in the US or I would be the size of the side of a barn! :lol: Speaking of barns...I love your barns crohnsinct! I wish I had one to put all my crap in...hmmm, I would probably need the two you have. 

In my dazed and shocked state I did manage to find that you, that being Angie/Izzi cause this is YOUR thread! :ylol:, met up with Dutch and his family. How fab was that! :thumleft: 
And that Izzi is having a scope today! (oops, well it is tomorrow here already). Sending loads of love, luck and well wishes to hubby and your fab Izzi!...

:goodluck::goodluck::goodluck:

...I soooooooooooo hope it reflects what you are seeing! 

Dusty. xxx


----------



## izzi'smom

Hi Hayley...it was so nice to meet you!!! and I'm glad I got the name right...with three it is confusing lol!  I actually saw you standing there and was planning on wandering that way. 
Now, cow tipping I have heard of, but the fine art of country cow skiing eludes me. The mental image it conjures is fairly disturbing, however  I can't wait to hear all about it!
Tess-lol @ Stephen and the fries!
...and Farmwife...you bake?  We only have dessert in the winter-too hot now!
So every single time I heard "eh" in Ontario I cracked a smile. Generally it was at the end of a sentence by our waiter in the skylon tower but I also heard it on Clifton Hill. The man was trying to get someones attention, it CLEARLY sounded like "eh" as opposed to "hey" but he had an upward inflection as if asking a question. It was rather humorous. I am saddened to report I could not find a proper beaver tail ANYWHERE to savor ''' 
The kids had a blast though (I explained how Lake Erie goes over Niagara Falls into the Niagara River which eventually leads to the Atlantic Ocean all while sitting in a revolving dining room that affords a 360 degree view of Canada and America when Izzi interrupts me to say "Mom! Mom! Aren't there any rides here?" LMAO!) If I can get as smart as crohnsinct I may post pics here...I stink at it though...they are generally 8 x 10 which is why I rarely update them lol!
She is through about half of her Miralax; has only been the the restroom once and I sent her to her dads for the night (I am working tonight). Will post updates tomorrow (possibly evening!)


----------



## izzi'smom

She did well...not a single tear shed this time!

Her bowel is showing improvement with vasculature showing and scattered ulcerations. It is FAR better than ever before, although It still has some distance to go. She had three new rectal polyps, two of which he biopsied. Her small intestine looks WONDERFUL and pending biopsy results, we will continue to monitor her Tacrolimus, Potassium, CRP, BUN and creatnine levels and do a follow up scope in 6 months.:thumright::thumleft:


----------



## Farmwife

That's outstanding!!!!!
How great for you and her!!!
Keep up the good work mom and Izzy.
Still a ways to go but you'll get their.

Farmwife


----------



## Tesscorm

Awesome news Angie!!!   So happy for you!!! :banana: :banana:


----------



## crohnsinct

Fair Dinkum!  That means no surgery?!  That is outstanding news! Congrats and up and up we go!


----------



## Dutch941

Thats awesome news!   Good for you guys!


----------



## DustyKat

WOOHOO!!! What a fab update Angie!!! :emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance:

Onwards and Upwards Izzi! 

:mademyday:
Dusty. xxx


----------



## AZMOM

Soopa doopa!!!!! 

J.


----------



## my little penguin

Yippee wonderful news


----------



## izzi'smom

haha yes fair dinkum, not dingham lol!
and a pic from our vacation...I *do* have another child (when I met Mike he was unaware of my younger, ignored on crohns forum son) lol xavier is 2 1/2  
I am seriously technologically disinclined...when I try to resize it comes up T-I-N-Y...so sorry for the huge image!


----------



## Twiggy930

Gorgeous!


----------



## DustyKat

Awww, they are fab pics! 

I can edit the size to what I normally use but that may be too small for your liking.

Dusty. xxx


----------



## izzi'smom

Dusty...edit away!! some day i will learn lol!!


----------



## DustyKat

All done Angie!  Hope they are okay...went one up on what I usually use. 

Also edited the one on the nothing thread...:shifty-t:

Dusty. :biggrin:


----------



## Sascot

That is great that Izzi has shown so much improvement!! :biggrin:
I know how you feel about being technologically challenged - I still haven't figured out how to do any pictures.
If it makes you feel any better - after looking at your pictures, I couldn't figure out how to get back to the actual posts - had to shut it all down and restart


----------



## Naturelover

Awesome!

Enjoy your summer and while you're at it, enjoy some extra summer for my daughter and I. We've had a bit of a rough one this year.

Go swimming, bike riding and horseback riding for us. Then do my favorite activity, rollerskating! Yee ha!


----------



## izzi'smom

Nature...the swimming and biking we can do...but horseback riding and rollerskating? I might break a hip! (My sil has horses...she broke her neck after being thrown aa few years back. I have very little desire to go near them lol!) Hoping your summer improves before it is over...they are short enough as it is!!


----------



## Farmwife

Oh how cute they are!!!
I know what you mean. I do have a son that's 20 months older than Grace. He's a great kid and at 5 is already going to be a fireman. Yes we have the whole gid-up for him and plenty of opportunities for him to rescue Grace.


----------



## Lisa

izzi'smom said:


> Nature...the swimming and biking we can do...but horseback riding and rollerskating? I might break a hip! (My sil has horses...she broke her neck after being thrown aa few years back. I have very little desire to go near them lol!) Hoping your summer improves before it is over...they are short enough as it is!!


If you ever want Izzi to try riding- come on out!!!.....I'm sure Tori would be happy to 'share' Marci with her for a ride or two around the yard!!!!!


----------



## Crohn's Mom

So happy to hear that Izz is going strong ! 

Such beautiful little faces ! :heart::heart:


----------



## Lisa

oh - you ever have any thoughts of going up to the Great Escape - or do you think the kids are too young still?  I am heading that way with Tori this Thurs/Fri, and possibly again Aug 18th.....and can get DISCOUNT tickets/parking!!!!!


----------



## kimmidwife

yippeee! So happy to hear Izzie is doing so well. I was just thinking about you guys and wondering how it was going


----------



## crohnsinct

OMGosh what sweet angels!  Seeing their adorable smiles just made my night!  

Do I need to tell you al I have never ridden a horse?


----------



## izzi'smom

Pasobuff...let me think about Friday (I have a "mommy night out" Thursday and need to decide if I will behave or not ) I have a wedding the 18th otherwise I'd take you up on that date! Message me with ticket prices and details...I am super tempted!
Your neck o' the woods look beautiful...we may take you up on that horse ridin' visit some day!


----------



## izzi'smom

Second day of multiple bathroom trips and belly pain   

Yesterday we spent the day at the beach and I thought she might be dehydrated. 

Today it continued. 

We happened to get bloodwork drawn today, and her doc said he'd look for it and text me the results later. He also said there is dome viral stuff going around *fingers crossed*

*sigh*

I am not ready to get back on the Crohn's wagon yet...I was enjoying my ride down that sweet river (De Nile )


----------



## Farmwife

OH, I'm sorry.:kiss:
I hope it is just a bug.
I hope you can still float on your river, next to my bubble.


Farmwife


----------



## Dutch941

.  
Poor izzi..
Hang in there.....maybe it will just pass .....


----------



## crohnsinct

Oh no!  Praying and fingers crossed over here that it is simply a virus!


----------



## Tesscorm

Oh Angie,  so hoping that it is just a virus!!! :Karl:


----------



## kimmidwife

Angie,
Keeping my fingers crossed that it is just a bug. Keep us posted she is in my thoughts and prayers!


----------



## AZMOM

Fingers toes and eyes crossed!

((((hugs))))

J.


----------



## NMMom

I am going to send all my positive happy goodluck vibes your way!!!!!!!!!!


----------



## Sascot

Really hope Izzi just has a bug and she gets better super quick!  Sending warm thoughts along :ysmile:.


----------



## Clash

I am really hoping Izzi has just caught a bug and it will soon pass!!!:Flower:


----------



## izzi'smom

Crp down to .4 now *fingers crossed*...virus virus virus :voodoo:

Although her doc has told me we will have to wait and see.

Patience is NOT one of my strong suits.  :voodoo:


----------



## Lisa

yay if it is only a virus! .....hope she feels better soon and gets to enjoy the rest of the summer!


----------



## Tesscorm

Hope today's been better for Izzi!!:rosette1:


----------



## Naturelover

I hope it's just a virus and Izzie is on the mend.:rosette2:

Prayers coming your way.

Glo


----------



## Farmwife

I never thought I would be hoping some cute little girl had a virus but..........
I really, really, sincerely hope it's a virus!


----------



## QueenGothel

Hang in there momma.


----------



## Dutch941

How's she doing Angie?    Better I hope....?


----------



## izzi'smom

She didn't complain of pain at all yesterday (although I started my workweek...she was in day care part of the day) and I am hoping that it was just something in passing. YIPPEE!! Thank you all so much for the positive thoughts!!


----------



## Dutch941

That's great to hear!


----------



## momoftwinboys

Great news to start the day


----------



## Hope for Karina

Hi Angie    I'm glad Izzy's doing better!  I'm Karina's mom, Sue. We met at the park a few weeks ago with other children that had Crohn's or UC.  Thank you for telling me about this site.


----------



## Naturelover

Glad to hear she's feeling better.:soledance:


----------



## Tesscorm

Wonderful news!! :banana:  :banana:


----------



## kimmidwife

Fantastic news I hope it continues!


----------



## polly13

Hope she is feeling a little better today


----------



## LilyRose

Hoping for a good day today for you and Izzy.

I loved your imaginative name - river De Nile!! 

But I hoping there is no deneil here, just a tummy bug that will soon pass. I am so happy she has had a good summer. I kow you have had a long road.
Best wishes,
Lily Rose


----------



## izzi'smom

Thanks all!
Still had pain today, and I only had her for four hours  which makes me think her symptoms are creeping back, slowly but surely. I haven't yet cancelled her surgery (8/31) but probably still will...some days I hate being the parent!! Darn rollercoaster anyway lol!


----------



## Naturelover

Stay in prayer. Hang in there. Everyone is praying for you all.

Blessings!


----------



## Sascot

Sorry to hear that.  I really hope she manages to get over this quickly without having to have any intervention!


----------



## crohnsinct

Ah come on!  Is it too much too ask for a little virus once in a while...give a girl a break!  I hope things turn around quickly and you are able to cancel that surgery!


----------



## Dutch941

So ....today I went and got my first tattoo.   It is a tribute to my son, Matt, in honor of his past year and his perseverance during such a difficult time for a child.   It's a flaming ring with his hockey teams logo(unfortunately the Boston Bruins logo)...over the logo is a replica of his hockey number patch......the reason?    When he was his sickest he continued to play hockey with severe anemia.  When he was diagnosed and pulled from sports...he requested to be with his team throughout their season......and didn't miss a game despite a busy travel requirement.  He dressed as normal and warmed up on the ice before sitting the bench and cheering on is team.  He was returned to hockey just in time for the state sectionals and played well despite his recovery and lack of practice.  I hope the tattoo reminds him of this perseverance and I hope he never needs to be reminded ....but it's there if he should forget how strong he ..and others like him had to be.    I am declaring tattoo's on parents the official symbol of UC /Crohns !  So everyone get to your designing!


----------



## Tesscorm

What a great thing to do for him!!!  My son is also a hockey player so I definitely have a soft spot for these guys!   Matt's lucky to have such a great dad!!  :thumleft:


----------



## Dutch941

Now that I've hijacked the izzi thread...how's she feeling?  I hope better.   Tell her I'm going to help you guys design a tattoo!


----------



## AZMOM

Dutch - we need a photo of the tattoo as your avatar!


----------



## Farmwife

AZMOM I was thinking the same thing!!!! 
Picture, WE WANT PICTURES!
PLEASE!


----------



## crohnsinct

Aw Dutch that is totally adorable and touching!  

I would take you up on the challenge but I just got back from Florida and let's just say that a tattoo that you get when your twenty (zip it farmwife I KNOW I am no where near 20)  is not even identifiable when you are 80 and crap is sagging all over! Let me get over my PTSD first. 

Oh yeah!  Pics are a must!


----------



## Dutch941

First things first.  I would put up a pic..but I'm not sure how.....it says I need add the photos URL???
If anyone knows how to get the pic from my iPad to a post ill try....
Also ..as far as being 80.....at that point who cares what the tat looks like...you'll likely have bigger concerns....and anyone who sees the tattoo on an 80 year old will think, "that was a cool chick right there"


----------



## izzi'smom

Dutch941 ...I post it to a hosting site, like photobucket, first. I am sure there is another way but I can't figure it out lol!

A tattoo is an amazing tribute...does Matt love it?! Can't wait to see it. I am in crohnsinct's camp...no saggy, unidentifiable ink when my body is...well, worse than it is now lol! Otherwise I would have gotten one years ago! 

I haven't had time to read through all of the threads...is Matt still doing well?

Izz seems to be stable-in the bathroom a bit more frequently with slightly more pain but nothing awful. 

The Utica CCFA take steps walk is 9/29 @ 3:30, Izz had a great time last year and we are attending again if you are interested in joining us.


----------



## Naturelover

Glad izzie is stable for now. Hope she gets better soon. Prayers coming your way. Can ya hear them? LOL!

Yes! Absolutely! Post pics of the tattoo


----------



## Tesscorm

Hey Angie, how is Izzi doing?


----------



## Dutch941

Matt is doing well...we have reduced his meds and are waiting(again). To see if this corrects his liver enzyme issues.
Regarding the tattoo.....when your old and someone sees the tattoo they're not gonna think .."look at that old fool"....theyre gonna think..."that old person WAS cool once!"
Hope izzi is well....


----------



## Dutch941

Finally!   Sorry it took so long....


----------



## crohnsinct

Way cool!   :headbang:


----------



## Tesscorm

^^^ Very nice!  :thumright:  ^^^


----------



## Sascot

Yes, very cool!! :ycool:


----------



## my little penguin

Cool


----------



## AZMOM

There it is! Nice!


----------



## jmckinley

Glad to hear that Izz is stable. Hoping that the trend continues!

Way cool tat Dutch! 

I would actually like to get a tat, but DH would have a stroke. Ryan doesn't like them either, so I better get to thinking on another tribute!


----------



## Clash

Cool tat Dutch!!


----------



## izzi'smom

LOVE it Dutch!!! and who says I won't still be cool when I am old??! ROCK ON!! (Kidding. I never WAS cool loL!)
Hoping that the med shift works. 
Izz is doing well...started kindergarten yesterday. Her BUN/creatnine may be creeping upward (or her mother may be neurotic) and I need to get a reserve plan in place. We haven't tried Imuran but I read that it should be used with caution in patients with poor kidney function lol!





Dustykat, can you message me and explain how to resize puhleaaase?? I am an idiot and can't figure it out!!!!!


----------



## crohnsinct

Why resize?  I love it when that adorable face takes up the whole screen.  She looks great and so happy!


----------



## Tesscorm

She's so adorable!  And she looks so 'well'!! I'm so glad she's doing better!  

So, are you running out to get a tattoo...   guarantee you will be a very cool grandmom one day! :lol:


----------



## kimmidwife

She looks great Angie! adorable. does she like school? my kids are not happy in their new school although I keep telling Caitlyn she can't judge yet since she has only been at school for five days out of the three Weeks they have gone.


----------



## Farmwife

Oh Angie I'm SOOOOOOOOOOOOOOOOO SORRY, are girls can NEVER meet.:yfrown:

There would be the biggest girl cat fight between Grace and Izzy about who's the prettiest. :ybiggrin:
Then it would get really ugly when the mom's jump in.

:thumright:She beautiful. I hope she had a great day at kindergarten.:thumleft:


----------



## Sascot

That is a great picture!! She is so adorable and looks very happy.


----------



## Naturelover

No need to resize that picture! She's adorable! Made my day! Thanks for sharing.


----------



## Twiggy930

Beautiful!


----------



## Dutch941

Looking great!


----------



## DustyKat

Oooooo, nice Tat Dutch! :ycool: 

Awww, what a fab pic Angie......she is absolutely adorable! :hug: 

Seems like the consensus is no resize! If you do want to know though, I work off a Mac so unless you are using one too I'm not sure how you would resize. I use to work off a PC but I can't remember what program I used, I think it was just through office. 

Dusty. :Flower:


----------



## izzi'smom

Izz *loves* school; when I brought home her school supplies (ridiculously long list-20 glue sticks-really??) she claimed it was the "best day of my life!" LOVE her!! She really enjoys school and aims to please her teacher. 
farmwife, we would be afraid of Gracie...she is one tough farm chick!! They must meet, though...they are too cute not to!:rosette1:
and Dusty, yup, I have PC's! I am useless when it comes to a mac lol!:yfrown:


----------



## DustyKat

Oh Angie, what a joy to read! She really is a fab young lady and I have no trouble seeing how she makes your sing.  

I will call David in on the pic resizing. I well imagine he will able to set you straight! 

Dusty. xxx


----------



## Johnnysmom

Such an adorable picture Angie!!!   And that dress I love it. :heart:  It makes me happy to see Izzi so happy.  Praying for a very uneventful, normal school year for all of us!!!!                                                                  Dutch -  Great tattoo!!!  And I love the reason for it even more, it is a great tribute.


----------



## David

izzi'smom said:


> Dustykat, can you message me and explain how to resize puhleaaase?? I am an idiot and can't figure it out!!!!!


The forum software doesn't resize.  Do you know what size you want it?  Or do you know what you want to use the resized image for?  I'll do it for you once I know that


----------



## Sascot

That's great that she's enjoying school.  What on earth are they going to do with 20 glue sticks :eek2:


----------



## izzi'smom

David said:


> The forum software doesn't resize.  Do you know what size you want it?  Or do you know what you want to use the resized image for?  I'll do it for you once I know that


I was just going to make it smaller so it doesn't take up an entire page and slow down page loading for everyone.  So I would have to upload it to, say, photobucket, and resize it there?

Sascot, I think they eat them.  Seriously, I about fell over when I read her supply list. Mind you, I had to fight to get her in to the elementary that is two blocks from us, so I got the list 3 days before school. 

5 boxes crayola crayons
2 boxes markers
20 elmers glue stcks
2 boxes colored pencils
1 package index cards
1 package #2 pencils
1 1" 3 ring binder 
4 vinyl folders; 1 red 1 blue 2 choice
1 art smock
1 box tissues
1 box zipper bags
1 black dry erase marker, pointy tipped
$30 later, ugh!! Her teachers seems great, though, so I am thrilled. :thumleft:


----------



## crohnsinct

I had to also get 20 glue sticks for kindergarten.  I distinctly remember being so puzzled by it.  I mean really by the time she gets to the tenth one they will be dried out.  

5 boxes of crayons, 2 boxes of markers, dry erase marker, tissues?????Sounds like they are asking those who bring to bring extra for the kids who might not and also sounds like you are stocking the teacher's supplies. 

Art smock!  I still have T's and it was never touched.  

But like you said, she is excited so who cares really.  

So glad she is having fun in school!!!!


----------



## QueenGothel

Awesome news!  She is so cute. I can't even upload pictures bc I am on an iPad and I haven't figured it out.  I did the other stuff from the laptop and it really doesn't boot up or navigate well.  I want a Mac.


----------



## izzi'smom

So her Creatinine is at the top of the "normal" range and her BUN is high. From what I understand BUN is less relied on, but GFR (glomerular filtration rate) IS relied on, and in peds they also use cystatin c levels to determine GFR. Waiting for her doc to return call regarding what kidney function levels he is comfortable with (I am not convinced that her levels are "too" high; but want to prepared for the next step when that moment comes). Going to post separate thread to see if anyone else has used cystatin c/gfr.


----------



## izzi'smom

Going to get a CXR today to ensure the month long cough she has isn't pneumonia despite being on antibiotics. Stupid immune suppressants make me more OCD than I already was! She is also complaining of headaches and a sore throat...pushing water as the headache may be dehydration...all of this crap is taking up important brain function that I could be killing off with a glass or two of wine!


----------



## Farmwife

Sorry to hear about her cough. Grace has started her seasonal cough also.
I hope she gets well soon and her levels go down soon.


----------



## crohnsinct

izzi'smom said:


> all of this crap is taking up important brain function that I could be killing off with a glass or two of wine!


I'll be right over!!! 

I hope the chest xray goes well and this is jjust an annoying lingering cold...that girl has gluing to get to!


----------



## Tesscorm

Hope nothing comes of the x-ray and she gets over the cough quickly!  And you can get back to enjoying your wine!


----------



## izzi'smom

Crohnsinct-LMAO @ gluing!!
and don't tempt me with a road trip-I've never been to CT and it's on my list!! I can always bring some great NYS wines 
Tess I haven't had a chance for any good ones lately-I actually dumped out an opened untouched craft beer this week!  You'd think for the price I pay for them...ugh. 
I have the delusion that I'll put the kids to bed and have a drink/clean the house/research the latest IBD treatments/iron, and put away laundry. I usually fall asleep in my two year old's twin trundle bed, exhausted. Super mom I am not.  

Izz's CXR was deemed "fine" by her GI. I am awaiting the final report (not that I don't trust him, but he also deemed her labs fine when her kidney function markers were elevated and top normal. He *knows* I am an OCD mom; he must forget these things .


----------



## momoftwinboys

Happy to hear cxr looks good. My boys both had long time with coughs and ped thought allergies and gave them an inhaler. Cough lessened and went away and stopped using it.  

Wine road trip sounds good. I can not tell u how many times I have dumped out a wine in the am that I thought I would sit and enjoy before I went to bed. 

Sounds like izzi is enjoying her neighborhood school


----------



## izzi'smom

Still coughing...ugh!! Haven't heard final report yet...forgot to ask when i saw him yesterday. She is complaining of headaches-EIM or being stuck in a hot classroom for 8 hours/dehydration? I am pushing water-we shall see!!


----------



## Farmwife

I pray to she feels better soon.
I know what you mean you just never know this time of year.
Grace is starting some more symptoms, is it a virus or worked up about brother starting school???


----------



## Dutch941

What's EIM?


----------



## QueenGothel

I don't know if you use electrolyte water or not.  We found Essentia water and it tastes like real water and it has all kinds of healthy stuff infused and has a ph of 9.5. It might help hydrate her quicker.


----------



## Tesscorm

Don - EIM = Extra Intestinal Manifestation, i.e. joint pains, eye issues, etc, etc, etc.

Ang - if her cough is due to common allergies (dust, mould, etc.), my daughter used a syrop called Zaditen (Zaditan??) and it was a miracle treatment!!!  She would get a cold in the fall and her cough wouldn't go away for months (would usually stay until April-ish).  This happened when she was around 5, 6, 7 years old, did lots of tests, respirologist thought she had asthma (symptoms didn't make sense to me though), allergist determined the dust, etc. allergies and prescribed this syrop.  It literally got rid of the cough in 3 weeks and NEVER came back!   The way he described it is that it's not a 'cough' syrop, what it does is lessens the mucous/phlegm in your body and it is this mucous/phlegm that causes the cough.  She took it for 2-3 weeks, and then weaned off it and the cough was gone!  Although, at the same time, we did replace old carpeting, bought allergin free pillow cases, etc., it really was amazing that after 2-3 years of the same 'winter' cough, it disappeared and never came back!

:thumright:


----------



## Sascot

Hope the cough goes away soon!  Tess made me think (hard I know) - I'm sure Andrew was around 4 or 5 when he started getting allergies.  Maybe it is something "as simple" as that.
You know that wine trip sounds great just about now!  Think we should all join together and go on a tour!!  We could hire a bus since we couldn't drive with all the wine :thumleft:


----------



## Tesscorm

Sascot said:


> Tess made me think (hard I know)


 ...gosh, were you cooking at the same time?!?!   :lol:


You know, there seems to a high correlation between the number of conversations we have about our 'questionable' cooking skills and our enjoyment of cabs, merlots, chiantis, etc.  :shifty-t:  Could there be a link? 

(by the way, save me a seat on the bus!!)


----------



## my little penguin

Ragweed is in bloom/ mold in your area now.
Zyrtec or Claritin tend to work.
Allergist can run a rast test on your next blood draw.
Hope she feels better soon


----------



## izzi'smom

Tesscorm said:


> ...gosh, were you cooking at the same time?!?!   :lol:
> 
> 
> You know, there seems to a high correlation between the number of conversations we have about our 'questionable' cooking skills and our enjoyment of cabs, merlots, chiantis, etc.  :shifty-t:  Could there be a link?
> 
> (by the way, save me a seat on the bus!!)



Ahhh...so we need to drink more to cook better??? I like it!!!:thumleft: 
Izz has added a runny nose to her cough, and this ocd mom is concerned about her recent fatigue given that it is an early symptom of lymphoma, which is a SE of Tacro. I may actually have her seen (ped or GI? unsure yet. GI seems to cover all of it for us lately) It does not escape me that fatigue is also a SE of her IBD; however, this is not something I would be able to stress about, therefore I will assume the worst so my OCD PITA self will be all-consumed, needing to drink more cabernet. :biggrin:

No headache complaint today, and it was only 63 out (it has been in the 80's). Hoping it is over...yay!! We are having trouble with  her being whiny, which generally signals that she isn't feeling the greatest (not that it is an excuse/acceptable). Hate all of the possibly obscure/may be nothing/may be disastrous "symptoms" that IBD has made me neurotic about. 
Need wine again. Sadly, I am at work.  Maybe I will drink when I get home lol!!


----------



## LilyRose

Just to say 'Thinking of you" and I completely understand the OCD Mum thing! I go with detailsed lists of questions to our GI and don't leave until I have done them all!!

Hoping it all settles down nicley. Certainly warm weather, school etc etc can make kids tired and headachey. 

Take care,
LilyRose


----------



## crohnsinct

AW Ang...I drank for you last night...not IBD related just pissy swim team BS and felt I needed to be there for you. 

I sure hope the fatigue, headache, cough and whining are all related to just some stupid cold.  She could also be fatigued because of the new schedule.  It is tough going to school and having to be "on" all day..my oldest never napped but I remember the first weeks of Kindergarten she was exhausted and slept for over an hour when she got home.  A few of my friends kids used to fall asleep on the bus.  But I am right there with you wondering about all the things every little occurance could be.  Just stay out of Dusty's corner and leave your eyelashes alone. 

How is she today?


----------



## kimmidwife

Ang,
Just thinking of you and Izzi. I am just having a chance to sit down and catch up. It has been a crazy week. I am looking for new schools for my kids. We had picked a charter school for them and they all hate it. Caitlyn we have pulled out and decided to home school. So now looking for a new school for my two middle kids. Sixth and third graders.


----------



## Farmwife

Kimmidwife do you know what your using to home-school?


----------



## Tesscorm

Awww, Ang, I hope Izzi's feeling better soon...  I'd bet the fatigue is related to the beginning of the school year, I always remember it took my kids a few weeks to really settle into the new routine.   But, certainly, always worth checking out with the ped or GI.  :ghug:



Kim, good luck with the schools!!


----------



## izzi'smom

crohnsinct said:


> AW Ang...I drank for you last night...not IBD related just pissy swim team BS and felt I needed to be there for you.
> 
> I sure hope the fatigue, headache, cough and whining are all related to just some stupid cold.  She could also be fatigued because of the new schedule.  It is tough going to school and having to be "on" all day..my oldest never napped but I remember the first weeks of Kindergarten she was exhausted and slept for over an hour when she got home.  A few of my friends kids used to fall asleep on the bus.  But I am right there with you wondering about all the things every little occurance could be.  Just stay out of Dusty's corner and leave your eyelashes alone.
> 
> How is she today?


LMAO next time let me know-we can get drunk "together" and thanks for the support lol!!

I need to keep every eyelash-they are thin enough-but I can see me rocking and clicking knitting needles-plus they make a valuable weapon 

IDK yet-it is my 7 on (of 7 off 7 on midnights) -I just awoke and am getting ready to pick them up from daycare. I think this is part of the reason I have such OCD...I don't feel like their dad pays enough attention and I only get them 2 hours a day on my workweek-it's hard for me to assess them in 2 hours.  :mad2:

Kim, I am so sorry your kids are unhappy at school---what a tough thing to deal with. I hope things settle for you soon!! :rosette2:


----------



## jmckinley

I hope Izzi's symptoms are clearing up and it's just allergies or getting into a routine. As we say in the South "I bet she's just plumb tuckered out!"

I am the same way with symptoms. Every one is a sign that something bad is going on(and Med MD doesn't help LOL). It is hard when they are out of your care for most of the day. I always start the school year with an email to the teachers. One thing I stress to them is that they see him more than I do, so they are my first line of defense. I give them a list of symptoms and ask them to let me know if they see any change in him.

Hugs to you!


----------



## kimmidwife

Hi Farmwife,
We are using Florida virtual school program.it is a free program from the state of Florida. It is supposed to be good.


----------



## DustyKat

Yes! All of you keep out of my corner or I'll take to you with a knitting needle! Don't even think about ganging up on me either cause I wield a mean needle and can beat a rolling pin any day! :voodoo: <<<<That's me stabbing the doll with my knitting needle! 

How is Izzi going Angie? Are the symptoms settling? I have everything crossed that they are! Bless her...:hug: 

Dusty. xxx


----------



## izzi'smom

She's the Same dusty. Doc offered us labs today but kids are in dayycare/at scool-i am planning on sleeping and cleaning my house. WE'LL think about labs tomorrow. Ty for asking.:rosette2:


----------



## DustyKat

Have labs been done Angie? 

Thinking about you guys, :heart:
Dusty. xxx


----------



## Johnnysmom

Angie,

Sorry to hear Izzi's isn't feeling well    I completely understand the OCD and I know now that my son is gone most of the day it is harder to know how he is feeling.  He asked me yesterday if I was going to call him at college and ask about his poop.  I said Yes of course I will!  I need to know to move on with my day.  

Kim,  we were in Orlando and the schools in Florida are nuts.  We sent our son to a Montessori school and pulled him out after 3 weeks.  There are so many choices it is hard to find the right one.  We had families in our neighborhood where every one of their kids were at a different school.  The schools are all very specialized.  If you are in the Orlando area I can help, otherwise hang in there and get to know people and ask around.  There are good schools there, they are just very hard to find.  Good luck hun 

You know Cincinnati is pretty centrally located you all could come visit the hospital here and then stop by for some wine!  (Sorry Dusty not so centrally located for you but we have a great airport.)  Wish we could all meet for that glass of wine!

Tiff


----------



## DustyKat

You could all pitch in for my air fare??? :lol:


----------



## Tesscorm

Hmmm...  if we include the Brits and those down under, Vegas would be centrally located! :banana:  We could have a Poop Troupe weekend! :thumright:


----------



## crohnsinct

Bahaha Poop Troupe Weekend...I LOVE IT!!!


----------



## QueenGothel

I would personally rather go down under than to Cinncinati.  But yes the airfare is insane.  We need a boat and a big one too boot.


----------



## Johnnysmom

I agree Mary!  But I can't leave my kids that long and Dusty's are grown.  I would totally chip in for your airfare Dusty!  Is Chicago a better location??

I would love to get together!!!


----------



## Tesscorm

I've always wanted to visit Chicago! :banana:


----------



## crohnsinct

Chicago is my favorite place on earth!!!  To bad Farmwife hates the city...we will miss you!


----------



## Farmwife

Leave me on the farm. :ymad:
I can only imagine what would happen with all you in Chicago drunk off your behinds.:angry-banghead:
Oh wait I can.:yrolleyes:
Please don't drink and drive because I can picture

crohnsinct yelling out the car window "Give me liberty or give me death".:yfaint: I just hope she's dressed.

Angie in the back seat crying because she's afraid her ex-husband will confused Izzy's suppository for a pill.:facepalm:

DustyKat will be the drunkest of them all. :yfrown:She at this time will be hopping down the interstate like a kangaroo.

Tiffany, Mary and Clash will be running after her yelling.:runaway: Come back kangaroo.:awe:


And y'all end up in jail because the cop that pulls you over will say, "let's go".
Well naturally y'all thought he meant he need to use the lou and decide he must need help.oo:

And if I forgot anyone....... just be happy!!!!utahere:


----------



## crohnsinct

LMAO in Dunkin Donuts and now everyone in this town thinks I am nuts.  Thanks!


----------



## Farmwife

Tesscorm I'm sorry to say is the driver. No drinking for you.


Sorry Angie we're hijacking AGAIN!:ymad:
Theirs just something about your threads.:sign0085:


----------



## Tesscorm

:rof: :rof: :rof:  

No friggin' way am I driving! :ymad:  WTH, I'm going to get away from my responsibilities... and you're trying to add to them?!?!? Even in my little virtual world bubble?!?!?  I'm unfriending you! :mad2:

And, Clash won't be running down the street yelling for Dusty...  she'll be hanging out the car window yelling for her!  (She's experienced at that you know...)  

And, friend or not, you are absolutely NOT allowed to stay on the farm!  We'll need your moonshine...  and you WILL enjoy it!  With or without the NG tube!


----------



## Tesscorm

Do you remember my Canadian Aussie Brit with a southern drawl (throwing in a bit of East coast Italian) asking for a drink...

_Hey y'all, I'm dang parched here, dio mio, if anyone's seen a blimey bubbler give me a hoy, eh?_

Originally, meant it as a joke...  thinking it may have been a premonition!


----------



## Farmwife

I don't drink alcohol.:ymad: It's against my religion. Also I need every brain cell I have.:lol2:

Well some one has to drive!!!:yrolleyes: Twiggy930 it's on you.:shifty-t:
Oh yes Clash will be running after Dusty. Who do you think has her keys.:sign0085:


I dare you to unfriend me:ymad: I'm the best thing that's ever happened to you!!!:cool2:


Just kidding, I'm very lonely, please don't unfriend me.


----------



## Tesscorm

:lol:  NG tube it is then!  And, relax...  the more you drink, the less you'll care about those brain cells! :ylol:

I think I'm afraid to unfriend you   ...that rolling pin!! utahere:


----------



## Clash

Are you guys kidding me??? I miss this thread in two passes and when I finally get to it Farmwife has me in jail for helping a trooper poo!!! :yfaint:

Yeah, I'll definetely be hanging out the car window, I went for a run a couple a days ago but came back home after two minutes because I forgot something. I forgot that I despise running and I am so outta shape I can't run longer than two minutes!!!:hallo3: So I'll just hang out the window with my cam and film Dusty's kangaroo performance!! We gotta have something to post on you tube to raise the funds for bail. I can see the headlines now...Inebriated Poo Monger Parents Take Over the Streets of Chicago...with a little down under flare(farmwife get your mind out of the gutter I'm referring to Dusty's country of origin!!:lol2 Or better yet Wine, Poo and Kangaroos!:shifty-t:


----------



## Dutch941

You forgot me!      See !  U ladies said I could be in the club ...then you leave me out all the time.     Plus, if u brought me we wouldn't have to worry about that pesky trooper....I have my own badge.


----------



## Sascot

Clash at least you get to go to jail and run after Dusty!  I assume since I'm obviously not included in this little trip I shall just have to go and sulk ..... :ymad:


----------



## Twiggy930

I am NOT driving!!!    Why isn't Farmwife driving again?  Is it because we are hooking her up to NG tube vodka???


----------



## Farmwife

Well dearest Dutch941 you were in my daydream.
Who do you think the trooper was!
Right now your feeling VERY violated:sign0085: from what the women did to you in their drunken state. 
Them thinking that prickly bush was the lou. You'll never be the same.:ymad:


----------



## Farmwife

So help me if any of you come at me with the tube....:ymad::ymad:
just know if I get a hold of it, :sign0085:
I'm really good at giving enemas now. I just saying.



My gosh Sascot who do you think is posting bail.:shifty-t:


----------



## Clash

haha....I didn't forget you guys, this wasn't my virtual bubble trip. I absolutely had you in mind Sascot to do all the fast talking to the local troopers, you think you can use a strong scottish brogue fluster the law or whip up some of that haggis???:thumleft: And Dutch you'll definitely be beneficial in helping crohnsinct pick out her tattoo, steering her towards the best parlor and away from the seedy places in her stupor!!:lol2:


----------



## Clash

And listen when they take us in stick to your forum name, kids latest lab results and number on the bristol chart of kids latest bm...might keep us all out of jail, probably not out of straight jackets but out of jail!!!


----------



## Farmwife

:shifty-t:Won't work. They'll think your druggies. 
Send you to rehab and teach you a "new way".:cool2:
Dutch941-you'll probably have to stay in Jail. 
Just don't pick up the soap.


----------



## DustyKat

Well Sascot or I aren't driving cause you Yankee nutters drive on the wrong side of the road! 

Put me behind the wheel and Trooper Dutch will have me up against the wall with my legs spread before I can say Fair Dinkum! 

As for the tube, they don't call me the enema queen at work for nothing! So just a word of warning...never, I mean never turn your back on me! 

	
	
		
		
	


	





Looks like you are designated driver Farmwife! :tongue:


----------



## Tesscorm

Omg! I TRY to get back to my life and things deteriorate quickly here!

Sas - don't worry abt being left out!!  She left me out too and then, as an afterthought, put me to work!  At least, she cud hv said I'd been left behind because of my drunker stupor!

Dutch - Farmwife's reference to prickly bush!   ...just a wee bit too close to a previous conversation abt thin, string roots and brothels!  :lol:  Can't even say more! :blush:
And, by the way, bending over for soap... Beware... There's a whole new meaning when the Poop Troupe is near!!!...  flashlights, tongs, little plastic 'hats', bristol charts or the dreaded Farmwife or Dusty Saturday Night Specials! 

Farmwife - don't u worry that pretty little head of yours abt the Tube!! . Twiggy and I will bring the 6-fr size!  Youre married to a big strong farmer!, this little tube will go down so easy!  And you'll feel so good afterward!  :rof:


----------



## Clash

Yikes...Tesscorm, I am staying away from you, Dusty, Farmwife and the tube!! There was just an online news article I read about the tube, seems some fraternity bros. from a college in Tenn. were using the tube for alcohol enemas and one ended up hospitalized. Details were sketchy when the article was posted, some students were denying the use of alcohol enemas, not sure of the outcome. As if beer pong, quarters and funneling were enough in the college wildlife!!!


----------



## Tesscorm

OMG !!!  You tell me this NOW when Stephens away for the weekend staying at a friends dorm!!!  I'd better go check our tube inventory!


----------



## Farmwife

Tesscorm said:


> Farmwife - don't u worry that pretty little head of yours abt the Tube!! . Twiggy and I will bring the 6-fr size!  Youre married to a big strong farmer!, this little tube will go down so easy!  And you'll feel so good afterward!  :rof:



:shifty:Wow you scare me now! I mean it. SCARED and a bit freaked out.



As far as calling me pretty. Thank you.:ybiggrin:


----------



## Farmwife

Poor Angie can you imagine her reaction when she reads this.



Oh To Ms. Dusty..............................
I believe you. Which is WHY I will be her on my FARM and not in Chicago. I don't even want to see pictures. I will not be apart of the newspaper article!!!!!!


----------



## Clash

Hahaha Tesscorm, I'm sorry!!! I'll remain quiet on the enema subject as long as I don't have to drive or run down Dusty the kangaroo in the middle of downtown Chicago!!!


----------



## Clash

Farmwife, you aren't fooling us we all know you will be the one writing the newspaper article!!!


----------



## crohnsinct

Mercy me!  I turn my back on you girls for a few hours and you go to hell in a handbasket!  Is this what you were referring to Dusty when you said sometimes we need to take a break?!  

Poor David..been so quiet on the subject. I suspect he is also crying in a corner somewhere about being left out. 

And oh yes, poor innocent Izzy...will have this all as part of her journal. 

Hey I am excited..I just got drunk AND a Tatt!  Shopping for my design right now!


----------



## Clash

I predict by the end of the trip we all end up with tats....a cool tat of the crohns ribbon!!! You might just end up with a navy anchor or I love mom tat as well!


----------



## Tesscorm

:yfaint:


----------



## izzi'smom

oh. my. 
I was feeling all guilty when I logged in because I have been having health issues and haven't been on in forever.  
Then Dusty's thank you post moved me, almost to tears.
I was pleased to see my thread showing new posts (it's like finding a letter from an old friend in your mailbox); and then curious as to how I had missed an entire page of posts.

There are tears of laughter streaming down my face.

D-I am hereby starting an airfare fund, as we wouldn't have as much fun in Chicago without you. I will be sure not to turn my back-never had an enema, but not interested in trying.

FW-d ex WOULD mess it up...he complained that I never "taught" him how to comb Iz's hair...really?? 

CICT-drunk while picking out tat-scary combo IMHO! Good luck!!

 can't even remember all of the posts...you are all crazy and it would be so much fun to get together!!!
I am taking Izz for monthly labs today. Still coughing, but so is her brother. 
Will try to catch up on the forum tonight while at work...keep it up, ya'll; I haven't laughed so hard in weeks!!!


----------



## momoftwinboys

Good luck with izzi's labs. Hope both of them get rid of their coughs soon.


----------



## Dutch941

Ang.....hope izzies labs go well.....Matt s recent labs still a problem...dr pulled him off the 6mp.  Wants to see how he does on pentasa alone...makes me very nervous....I'm so worried about the stress of another flare up..on him and on me..sometimes you feel like you're at you're breaking point you know?   I love him not having to take 6 mp but worried about the result of that.....
Crohn'sinct...?good luck with that tat!  Pictures please!   Also....I thought of the symbol when I researched my tat but it is shared with other disorders! Why can't they have their own?   Also..I thought it was better to commerate his perseverance using the hockey symbol rather than to use the disorders symbol......


----------



## izzi'smom

Ugh, Dutch...from one he!! to another. Glad that he is off of the 6mp (we haven't yet tried it...I was scared) but it's awful that you can't enjoy it when he's feeling good...just waiting for a flare. 
I have a friend that does well on Asacol alone...hope this is the case for Matt and Pentasa! 

Completely agree about the "crohn's purple ribbon". It's also the symbol for every other disease that doesn't have it's own. I like the thought about perseverance-helps to reiterate that our kids have the disease, not the other way around.

We did the Utica CCFA take steps walk this weekend-it went well and I would like to get more involved next year.


----------



## QueenGothel

Hope her labs go good.  We go tomorrow for a pouchoscopy. Not fun.  At least my only prep is an enema in the morning. 

Too bad I don't have these enema experts here in Michigan.  I haven't given too many of them, but then again 1 is 1 too many to me.  This was a very entertaining thread.   I got my share a laughs today.  My kids just think I am weird laughing out loud by myself.

Dutch So sorry your sons meds aren't working right.  I hope he stays well.


----------



## Tesscorm

Dutch - I hope all goes well with your boy!  I completely get being happy about less meds but worried about less meds!  Ugghh!

Angie - hope the labs bring good results!!! 

Mary - don't worry...  I've had many a laugh all by myself!  :lol:


----------



## DustyKat

How did Izzi's labs go Angie? :hug: 

I hope Rowan's scope went well Mary. :hug:

Oh man Dutch, I so know that feeling! Ya damned if ya do, ya damned if ya don't! :voodoo: 

I so hope all goes well for all for kiddoes, bless them. :ghug: 

Dusty. xxx


----------



## izzi'smom

Labs took a while to come back but saw them tonight...crp is back up over 6 (was <1 last month ((). Her hemoglobin is a bit low and platelets are high, which is our new normal. BUN and creatnin are stable and cystatin c (to determine peds gfr) was a sendout...not back yet. 
She is a bit tired and c/o a bit of pain lately, so I should start thinking of our next plan of attack soon. I must have looked crestfallen at the CRP-her doc apologized for looking it up tonight. #happyinmybubble


----------



## Sascot

Oh dear, that's a shame.  Hope the CRP comes back down and the pain goes away!!  Happy bubble, happy bubble


----------



## DustyKat

Oh man Angie. :hug: 

Wishing, hoping and praying for nothing but the best for darling Izzi. :heart: 

Dusty. xxx


----------



## Farmwife

I hope you can stay in your bubble.
I hope labs go back to normal.
Hugs to Izzy from Grace.


----------



## izzi'smom

TY to kimmidwife for thinking of us...a quick update!
Izz is doing wonderfully!!
The beginning of November marked 6 months on Tacrolimus and Bactrim for her. Her CRP is <1 (was in the 60's) and her kidney function is on the high side of normal, but steady for now. We are so fortunate!! She occasionally has belly pain and has an accident once a week or so-her doc tells me it is functional after her colon being so damaged for so long. Her scope a few months back still showed chronic inflammation but I'll take it!!
She is probably due for another one soon. 
She has started kindergarten and LOVES it...her teacher has told me that if she continues to do this well she will likely skip a grade. 
I have decided to return to school...I would like to either be a Physicians Assistant or Nurse Practitioner. I am busy getting ready for this...it will be a tough few years but I am excited about the wide range of opportunities for jobs and the higher income will help me to provide for my kids as a single mom. 
 I used to catch up on the forum at work but have limited access these days...and life at home is somewhat crazy!! I think of you all often...and I just visited "much ado" for a belly laugh...TY to all for that!
I just spent 10 minutes resizing these things in photobucket...and I swear they are even bigger. I give up. Mods, feel free to make them smaller lol!


----------



## crohnsinct

ANGIE!!!!!!!!!!  I am soooooo glad you posted.  I was away for awhile with family issues got back and then back off for hurricane and couldn't find mention of you anywhere and then when you escaped the whole what you look like game on Much Ado I was getting paranoid that something really awful happened to you and everyone just didn't want to bring up your name.  Either that or you had met some tall dark ridiculously handsome guy who was a wine distributor who loved to cook and they were all jealous and erased you frrom their memories. 

So glad to hear things are going well and that you have a new exciting plan.  I think you would make a fabulous health care provider whether you decide nurse or PA.  Go for it Girlfriend!  

Oh and seriously?!  Those pics of your kids are to die for!  For some reason that photog's name sounds very familiar.  Where do you live?  I think she did some "love story" shots for my niece...yeah that's right I am old enough to have an niece getting married...don't rub it in!


----------



## Jmrogers4

Your kids are adorable!  Love the photos.  Good luck with school


----------



## izzi'smom

:rof::rof::rof:
and TY. She is from Camden, NY...but we are near Syracuse and Utica. I live for her photo sessions...she is by far my fave.


----------



## Dutch941

So good to hear things are going so well!
Keep it up!


----------



## Tesscorm

So glad to hear all is well!!!  And the pics are so adorable!!!

And, I'm with Crohnsinct...  think you would be fabulous as a nurse practitioner or physician's assistant!  Go for it!!!! :thumright:


----------



## Crohn's Mom

Angie ! So great
To hear from you ! And even better that izz is doing so well  
The pics are amazing - such beautiful children! 
Best of luck with your new schooling endeavor


----------



## DustyKat

WOW, WOW, WOW Angie!!! What a fab update! 

I am so happy to hear that Izzi is continuing to do so well and blitzing them at school as well! What a champion! :soledance::soledance::sole dance:

And you Angie! I'm gobsmacked! :ywow: Not because you aren't capable! :lol: But because you have the vision, drive and compassion and are so darned accomplished! Good luck with your future endeavours! :medal1:

And last but by no means least your babies...what absolutely stunning pics. :hug: They surely are beautiful children and it is no wonder to see why you are so very proud of them. 

Dusty. xxx


----------



## QueenGothel

Glad to hear all is well with all of you.  The kids are so cute.  I love the new pictures.  Glad to hear izzys doing well and by the looks of her is off the predisone.  Good luck with school.  I am thinking of doing the same but continuing my education in nutrition/dietician.  Such a good update.  You have made my day.  Happy Thanksgiving we all have a lot to be thankful for this year.


----------



## jmckinley

Great update on Izzi! I hope that things continue to go well! Wow for her with school too! Skipping a grade!

As for you! Kudos to you for going back to school. You are very courageous for going back, but YOU CAN DO IT! 

The pics are incredible!


----------



## Johnnysmom

So great to hear such a wonderful update!   And the pictures are amazing.  I wish I lived closer, I would use your photographer.  

It sounds like school is going well for Izzi too.  Skipping a grade!  Maybe she'll grow up to be a Pediatric G.I. and she can help all these little ones. 

As for going to school, you already know so much about medicine you might as well have the degree right?  

I'll be praying that next scope continues to show improvement.  I agree with Mary, lots to be thankful for this year!


----------



## momoftwinboys

Happy to hear Izzi is doing well.  Smart girl, like her Mom.  The medical profession will be a better place when you finish up your degree.  Good Luck!  The pics are awesome, thanks for sharing,


----------



## izzi'smom

So while she is still doing fantastic, something just struck me. 

She often tells me her butt hurts. I have assumed FOREVER it's because she isn't wiping effectively enough, so I clean her well and apply cream. The last time I did, she complained that I never apply the cream where it hurts (helllo drama!). I am wondering if she is having internal rectal pain.,..can anyone relate???


----------



## DustyKat

Thanks for the update Angie...:hug:...it is so fab to hear all is still going well...

But I'm not sure about the rectal pain. We haven't had issues with the large bowel here but I don't think you are wrong is suggesting that she may be feeling some internal pain. Has she ever described it as being 'inside'? 

Dusty. xxx


----------



## Sascot

I have that problem with my daughter - for years I put the cream on to try and help her bottom pain, only for her to eventually tell me it doesnt' help because it's not where she is sore. :eek2:.  Still we put cream on every night - I think it's more a comfort thing now - just on the off chance the cream might help :lol:.  
I think it's an age thing, that they can start to distinguish between pain on the skin and pain from further inside.  Amy now says the pain is deeper inside.
Why don't you ask Izzi at a time when it is sore.  Ask her to point exactly where - put some cream on there and then ask - is it sore where I am touching or is it further inside.


----------



## izzi'smom

that's a good idea. I was hoping to save her from a digital rectal exam from the doctor if I can help it. Is it wrong to hope she has pain today so I can find out quicker? Lol! She has never actually said it's inside but I didn't think to run my finger around the outside to see if she can pinpoint the pain better. I usually try to touch her as little as possible because I know it's already sore.


----------



## kimmidwife

Angie,
My little one often complains of the same thing. I was worried about an internal fistula or something that you can't see. When I take her to the doctor in two weeks I plan to ask about it. I would definitely ask your doctor about it.


----------



## my little penguin

Hugs DS has that pain here.
He has rectal prolapse and proctitis so....
Creme does not really help.


----------



## Crohn's Mom

I have no useful advice Ang, but i'm so glad to hear that Izz is doing well ! 
:soledance:

How is school going for you?


----------



## QueenGothel

Rowan often use to complain of rectal pain. I thought I was butt burn but it is inside.  For some reason once we started spraying her off with warm water it seemed to help the discomfort.  When I research it it stated that the warm causes the blood to come to the surface more to promote better circulation and therefore quicker healing.  Idk if that is what has happened or if it is a mental thing?  Granted I am sure Rows pain is because of the liquid poo, frequency and how acidic it is.  It also improved after we started giving Omeprozole again to cut the acid and psyillium to make them more formed.  Are her stools formed now?


----------



## izzi'smom

As far as I know they are formed. :shifty: she shuts the door to the bathroom now lol. She needs labs this week...I am not sure if I am going to let him examine her or have him do the follow up scope he was planning on doing and do both at once while she is out.


----------



## izzi'smom

We chatted...I told him I am not eager to get her rescoped (he said he is well aware, as otherwise I would have been blowing up his phone about it lol). I told him I believe that stress may be a factor. He asked Izz if she worried to which she replied yes. He asked what she was worried about and she said "I'm concerned that my dad is going to kill my brother" OMG I about died. She said "He's mayhem, y'know, and my dad gets really mad at him". 

I think I need to get this poor girl back in therapy ASAP. My poor worrier.

Her GI texted me that labs were "normal" but no values except CRP at 2.5 (up from .6 last month).

No complaints of rectal pain since my last post...so we are doing well.


----------



## polly13

Great news that izzie is doing well


----------



## Tesscorm

I'm so happy that she's continuing to do well!  And too funny about her worries!!!!  What a sweetheart! :heart:


----------



## Dutch941

Normal labs are such a relief aren't they?   Keep riding the wave! Glad things are going well for you all.....:thumleft:


----------



## Sascot

That's good to hear - glad she is doing well!


----------



## DustyKat

Thanks for the fab update Angie!  Warts and all! Izzi is a hoot! :lol: 

Onwards and Upwards!
Dusty. xxx


----------



## Farmwife

I'm glad things are better.
Hugs to Izzy.


----------



## my little penguin

Love the labs and lack of pain
May it continue.
As far as door closed....
We have a rule close the door finish but leave the contents for mom to inspect when your finish.
We aslo use the Bristol chart ( kiddie version) for when he is at school.

We are working on an app for his iPod which logs date and time automatically for him for bm's then he just pick Bristol number and if there was blood.


----------



## izzi'smom

Izz is still doing well...no recent complaints of pain...but her brother (2) has abdominal pain that has him writhing and screaming! It's intermittent, and he is also vomiting so I am sure that it is a bug, but how do you turn off that IBD parent switch? Feeling terrible for the little man, though...poor kiddo! This is the second day of it...if it continues tomorrow I will call the doc to be sure.


----------



## my little penguin

Hugs it is never easy.


----------



## Johnnysmom

Johnny's little sister had a weird period like that this summer.  She described her "pain" like a UTI, which the Dr. treated her for but then when the culture came back negative they called and told us to take her off the antibiotics.  She then started vomiting. Wouldn't eat much for 2 weeks and complained of tummy pain on and off.  Dr. thought she was constipated and it backed her up, put pressure on her bladder and then she got a intestinal bug.  Seems like way too many coincidences to me.  But she got better and since is gaining weight and growing but I know that feeling. 

I do think that him having that much pain with the stomach flu would be strange.  I know at 2 it is hard to distinguish between pain and intense nausea so maybe that is it.  But I did consider asking them to do a fecal cal on Brooke if she hadn't gotten better.  

Hope it is just a bug and he is feeling better soon.  ((((Hugs))))


----------



## kimmidwife

Hugs! Hopefully it is just a stomach bug. Keeping my fingers tossed for you guys!


----------



## crohnsinct

UGH!  Right there with you with O's younger sister.  When you find the switch let me know where it is.


----------



## Sascot

Yep, my hearts sinks any time Amy mentions sore tummies.  Hope your son is feeling better today!


----------



## Dexky

Oh man Ang!  Every time one of my girls mentions stomach discomfort of any time, there's that little nagging voice in the back of my head!!  I hope it's nothing and he feels better soon!


----------



## Dutch941

Man,   I know that feeling.  I am an absolute wreck when any of the kids are sick...especially Matt, just due to the UC and fear it will flare.  My wife has to constantly remind me...remission or not, kids still get sick......so I sweat it out and so far it has ironed itself out.   Have to keep reminding ourselves that headaches, stomach aches, bugs, and flu s are still going to happen .....


----------



## izzi'smom

came to the er...he was shrieking in pain this am. US was inconclusive as aappendix wasn't visualized...labs normal but 2 enlarged lymph nodes on us so drinking for ct now. or trying...threw up the first cup of contrast. fortunately the Er doc is a friend...didn't have to fight any battles.  she said she thought they were putting in another iv when he was screaming in pain...no one was touching him .  he's making me cry today! anyone care to deliver wine lol?


----------



## QueenGothel

Aw I wish I lived closer to you.  Are they admitting him?


----------



## Jmrogers4

izzi'smom said:


> anyone care to deliver wine lol?


Someone needs to come up with a wine bottle bouquet, instead of flowers a bottle of wine, glass and opener. They could carry it in the gift store 

Hope all works out for you little guy and he is pain free soon.  Thinking of you.


----------



## polly13

Oh Angie hope things are going ok there. Thinking of you.


----------



## crohnsinct

NO WAY!  Gosh I hope he is feeling better soon and they figure this thing out. 

Mary: nice avatar...much more you than that sweet angelic woman! 

Gift shop selling that basket...LMAO...could you see that hit the  news...Children's Hospital aplies for liquor permit.hahahaha

Best we don't live close to each other...we would all need a different kind of forum if ya know what I mean.....


----------



## Farmwife

I hope he gets better.

Hugs to you both!


----------



## Sascot

Thinking of you!  Hope they manage to do something to help!  Wish I could send that wine or maybe an extra long straw :wink:


----------



## Lisa

Hugs Ang! Hope they are able to get him sorted out SOON! At least help with the pain until they do.....


----------



## upsetmom

Thinking of you.....:ghug:...:ghug:...:ghug:


----------



## izzi'smom

We are home!!
Labs are normal, but appendix not visualized on ultrasound OR ct. 
2 enlarged lymph nodes assumed to be related to gastro bug. 
Can't believe he is in EXCRUCIATING pain from a bug, but so be it. 
I never thought to piggyback his Tylenol and Motrin, though (I no longer use it for Izz-NSAID)...I am thinking it helped immensely as he slept for 3 hours in the hospital. Hoping tonight goes better...we were at the ER for over 8 hours today and I am BEAT!
THanks for all the love!!


----------



## my little penguin

Hope things turn around quickly and you get some rest


----------



## AZMOM

Angie - BIG HUG. 

J.


----------



## kimmidwife

Sending hugs and hoping you get some rest!


----------



## polly13

Glad your home hope you get some rest


----------



## Sascot

Glad you managed to get home.  Hope the bug passes soon and he feels better!


----------



## izzi'smom

He woke up completely fine...guess a trip to the ER was therapeutic. 
I have to share this...he was given a suppository for nausea at the hospital. I was dropping him off at his dads and he had to poop, so I stuck around to see it (only all of you would understand this :heart. When he bent over and his dad was wiping him, he sprayed diarrhea all over his dad and the bathroom. I haven't laughed so hard in ages!!!
He is still leaking stool, but I am going to assume it is a combination of the suppository and the contrast. I'll take it over the pain.


----------



## Dexky

…then you immediately left…poor Dad!


----------



## upsetmom

What a site that would have been......:rof:


----------



## izzi'smom

Dex, his dad *did* call in to work to get dd on the bus, and he came to the ER for 1 hour so I could go get lunch and not eat in front of my NPO child. 
However, I spent 7:30a-4:30p at the ED after 2 days/nights with a vomiting, crying in pain child. His dad had him for an hour visit after we arrived home. You bet your a$$ I left!  
Oh, and his dad had borrowed a book from me...yup, he kept it in the bathroom and it was a victim of the d. It's karma! But it was SOOO worth it!


----------



## Dutch941

Glad your on the upswing....the Motrin ..Tylenol piggyback saved our ass on many occasions......we recommend it to everyone...of course that was pre UC


----------



## Dutch941

Now you have me thinking...could the Tylenol motrin piggybacking contributed to the UC issues???


----------



## Johnnysmom

We did that with Johnny as well right before diagnosis.  I think it made things worse for sure.  But it was the only thing that took the pain away.

I hate to be a downer Angie but they told us the same thing at the ER with Johnny.  Couldn't see the appendix well, small bowel loops, normal labs, enlarged lymph nodes.  Once I actually got a copy of the labs there were some that were slightly abnormal (low protein 3.9)  But they didn't do CRP and SED rate, I think because of the longer turn around time.  They gave him pain meds and sent us on our way.  I week later the pain came back and this time with a slight fever every evening.  They said he had gastritis too.  I would get a copy of those labs, if you haven't already just to look them over.  Maybe they took an extra look considering Izzi's history but they clearly didn't check Johnny over well enough.


----------



## izzi'smom

Dutch, I bet it did. We didn't use Motrin off the bat for Izz because she presented without pain for a long time, thankfully. They are known to, though. 

Johnnysmom, thanks for the heads up. He's hardly c/o any pain today and is keeping food down but has nasty d (he's actually wearing a pull up to catch the leakage).  I would normally have gotten copies of everything before I left but was fairly relieved to be discharged...It's the hospital I work at so I will be getting copies of the imaging and ER visit when I return to work Monday. At the very least I like to keep our own medical records and I truly DO want to see it all. 
While it is nice to have a personal relationship with the ER doc, it's tough b/c I would have refused the Phenergan suppository and insisted on Zofran PO or IV to begin with in order for him to keep the CT contrast down. I did the second time, though. This being said, I have no qualms in obtaining copies of results. Mama bear hear me roar. 
I will keep a close eye on him...I didn't realize it could wax and wane so much. 
and yup, I gave him Motrin today. Works so much better. Hoping I am not asking for GI trouble.


----------



## Johnnysmom

Sorry Angie, I should know better.  You have been through all this before 

So glad he is feeling better.  

((((Hugs)))))


----------



## izzi'smom

ACK, I meant the thanks heart-felt-edly (made it up! ) Because it is new territory and he was in SO much pain, I didn't even think to ask for CRP, which I should have. UGH!


----------



## my little penguin

Hugs ..
Hope he is feeling better soon.
Fwiw with DS they couldn't visualize his TI .
So we were told he was fine and definitely didn't have to worry about crohn's
I didn't even know what that was back then


----------



## Dexky

izzi'smom said:


> Dex, his dad *did* call in to work to get dd on the bus, and he came to the ER for 1 hour so I could go get lunch and not eat in front of my NPO child.
> However, I spent 7:30a-4:30p at the ED after 2 days/nights with a vomiting, crying in pain child. His dad had him for an hour visit after we arrived home. You bet your a$$ I left!
> Oh, and his dad had borrowed a book from me...yup, he kept it in the bathroom and it was a victim of the d. It's karma! But it was SOOO worth it!


Ang, I will never understand any man who can live w/o his children!  I guess I would be a total Mrs. Doubtfire if it came to that.  You truly amaze me!!


----------



## DustyKat

Not everyone bloke is a SNAG like you Dex. :kiss: 

Wow Ang! Sorry I have missed all this!  

What a bloody awful time you have had. :ghug: 

Now IIRC you mentioned a switch? There is no fecking switch just ask me! Well there better bloody not be or I'll kill the bugger that hasn't told me where it is! Seriously though, I so know the feeling hun...I felt it with Matt and I continue to feel it with both of them every time there is even the mention of feeling unwell. Hell it doesn't even have to be a abdo problem! Just call me mad, crazy, WorryKat! :lol: 

How is your little guy now? Still on the mend I hope! :heart: 

Dusty. xxx


----------



## polly13

Angie Glad he is doing better, have to say I laughed out loud when I read the story of him spraying his dad with poo


----------



## Sascot

Glad things are better, although I hope the leaking does stop soon!  Also had a good laugh about her dad!!  My husband usually has to leave the room for stuff like that, he would have had a fit :ylol:


----------



## izzi'smom

HE is still c/o belly pain sporadically...probably five times a day. I will get ahold of labs in the am and am meeting the GI later this week...I will bring it up to him then. His stools are normal, no vomiting, and no fever, so I am keeping a close eye on him. If Izz didn't have Crohns I wouldn't bat an eye. 
We just got back from getting our monthly bloodwork. Two sticks for the first time in a LONG time (she cried, and cried ) PLUS the med that I called in SATURDAY wasn't ready and I get SO frustrated. 
The pharmacy tech was telling me "You can wait, but I can't guarantee it will be done tonight" and the pharmacist is standing behind her motioning "come back in 5 minutes". So I find something to do with my two young children for 10 minutes (that includes tears over sharing one gigantic, overpriced cookie and spilled chocolate milk on a freshly washed coat) to return to the pharmacy with my $5 copay to realize that we have an annual deductible and it is costing $85, which I completely didn't budget for. This is after driving 45 minutes, paying a toll, paying to park in the parking garage. The sweet pharmacist again comes to the rescue and looks up the exact amount of my deductible so I know...I could have kissed him! I got his name so I can let someone know how sweet he is. :heart: I wish I could kvetch about the pharmacy techs at the same time but it would diminish my gratefulness for the pharmacist so I'll keep my trap shut.


----------



## DustyKat

I hope all is well with the little lad Angie, bless him. :heart: 

Good luck with the GI meeting! 

Dusty. xxx


----------



## izzi'smom

and I forgot to share izzi s reaction to Xavier s iv..."its about time- now he knows how I feel. I hope he gets as another one soon" :-0
 and Xavier s reaction to izz needing labs after getting his first iv? "I give izzi hug and kiss, mama. she feel better". :heart:


----------



## crohnsinct

Izz: LMAO :rof:

X: so sweet :hug:


----------



## Farmwife

Brothers and sisters.

My son-I went to ER they gave me shots
Grace-AND......


----------



## muppet

Izzi's Mom I tried to get caught up on everything in this thread and went a little cross eyed. 

I wish you the best, though. What a lot to deal with. Ack! How old are your two kids now? Both with IBD? 

And custody issues on top of things. Lucky for me Sarah's bio-mom mostly stays away, but lately Sarah has been meeting her for lunch which kinda ticks me off honestly. Bio-mom hasn't bothered to ask about Sarah's school, hospitalizations, clubs, boyfriend, etc etc etc and all of a sudden she's handing out big value Visa gift cards for Christmas, birthday... how about some child support for the past 10 years.. !@#%@#

Wow that was a tangent. ANYWAY, I hope things are settling down..?


----------



## Crohn's Mom

Ang I love how you keep a sense of humor in the midst of all the stress !
I hope the little guy is feeling better :hug:


----------



## DustyKat

izzi'smom said:


> and I forgot to share izzi s reaction to Xavier s iv..."its about time- now he knows how I feel. I hope he gets as another one soon" :-0
> and Xavier s reaction to izz needing labs after getting his first iv? "I give izzi hug and kiss, mama. she feel better". :heart:


:mademyday: 

Thank you!...Dusty. xxx


----------



## izzi'smom

@ FW: Ha! lol at your little sweetie!
@Muppet: They are 6 and soon to be 3. I am not fully convinced my youngest, Xavier was only suffering from a stomach bug as he is still c/o pain.
I don't mean to complain about their dad...while he can be clueless (like wanting to leave the ER after relieving me for under an hour so I could eat) he and I get along remarkably well most days. We both see the kids almost daily and share financial responsibility fairly evenly. I am sorry that it isn't the same for you...and for your dd, although she will see through the high $$ gift cards some day, if she doesn't already. 
CM: TY...I don't have it all that bad, but I feel bad that I often vent here.  The whole pharmacy thing was just me whining...but I'm over it.  

We can't get her tacro in 3 month supply as it expires 58 days after being mixed...nice of ANYONE from the pharmacy to let us know this since shes been on it 8 mos! I am fairly certain I have dosed her old meds in the past unwittingly.

 Xaviers "normal" labs from the ER aren't normal...glucose, co2, protein, ca, bilirubin, anion gap, osmolality, atypical lymphocytes, absolute lymphocytes, monocytes, and basophils are ALL abnormal. I need to research if this can all be caused by a stomach bug or if something else is happening here. I was concerned about appendicitis, but barring that (WBC is normal BUT appendix not visualized) I am concerned about IBD. He has thickening of the cecum and ascending colon along with two enlarged lymph nodes. I'm meeting doc this eve and will show him the labs/ct/us and see what he has to say.


----------



## DustyKat

UGH! That sucks about the Tacro! Nothing like keeping you fully informed! :yfrown:

Re Xavier, I don't know what to say Angie.  I hope the consult goes well and that his labs and imaging are easily explained away as nothing serious. Just know you are in my thoughts and I am sending mega loads of love and luck your way. :Karl: 

Dusty. xxx


----------



## Mylittlesunshine

Sending (((((hugs))))) ur way hope everything
Goes ok with doctor appointment
And ur little manis ok x


----------



## Dexky

Amen^^^!

Hoping for good news Angie!


----------



## my little penguin

:ghug:

Hope you at least get some answers and direction


----------



## kimmidwife

Angie,
I hope you get some answers! Sometimes bugs can make labs wacky so I will keep my fingers crossed and be waiting to hear about your appointment!


----------



## izzi'smom

Marcus tells me to watch xavi closely...he thinks appendicitis is still a possibility despite no elevated wbc...he is also suspicious of intassuseption that self resolved. The inta. would explain the colItIs and lingering pain. He knows a doc that finds the appendix on every kid with ultrasound...if xavis symptoms don't subside I will try fir another US with him. He thinks ibd is possible but unlikely.


----------



## DustyKat

Thanks for the update Angie.  

I hope all settles for your little guy and no further testing is needed! Good luck! 

Dusty. :heart:


----------



## Dexky

izzi'smom said:


> He thinks ibd is possible but unlikely.


Unlikely, I like!


----------



## QueenGothel

I hope it is just a whole lot of nothing.  I know your worried I would be too.  Hang in there. We know you got your hawk eye on him.


----------



## polly13

Thinking of you angie hope this turns out to be nothing.


----------



## izzi'smom

Just needing to vent...
Tim packed a bag for the kids to take to a sleepover. 
I pulled Izzi's meds to be sure they were clearly labelled for my MIL...
She gets 2.2ml/Tacro and 10ml of Bactrim...the Tacro was around 2mls but the Bactrim...4 and 6 were the doses he sent. Are you $%^# kidding me?? Not only is it keeping her from getting potentially life threatening pneumonia (which is why Tacro is always prescribed in tandem with Bactrim), she could potentially have bacterial resistance problems because he isn't dosing her properly. ARGH!!
She is healthy...we are SOOO fortunate..and i'd LOVE to keep her that way. I tried to be as diplomatic as possible as I gave him new, well marked syringes and showed him how to measure. I only hope he is more careful.


----------



## DustyKat

I hope so too Angie! Ugh! 

How is Xavier going? 

Dusty. xxx


----------



## crohnsinct

...and they wonder why we are control freaks! :kiss:


----------



## izzi'smom

HE complained about his belly twice today in the 2 hours that I had him...but once was after I asked him to pick up his toys...how quickly they learn!! Ain't no foolin' this mam lol! Once was legitimate, though...should probably take him to his ped to follow up just in case.


----------



## DustyKat

Yes! One second to learn, and what seems a lifetime to unlearn! :lol: 

I so hope the pains soon resolve, never to reappear again! :hug: 

Dusty. xxx


----------



## izzi'smom

I chatted with 2 of the radiologist today. Both think that if he is still having belly pain, a follow up ct is warranted. Isabel had a well child visit and I took xavi in to follow up. It turns out they both have fevers over 101 and he also has bilateral ear infections. We are going to wait for that to resolve until looking for there into his belly pain.


----------



## Crohn's Mom

When it rains, it pours right !

:ghug::ghug::ghug:


----------



## jmckinley

That ear pain could be the source of the belly pain. It sounds strange, but I remember Ryan always had belly pain with his ear infections. I hope it resolves itself soon!


----------



## kimmidwife

Angie,
Now that you mention it every time my son has had strep throat he has had very bad stomach aches. Has he had a throat culture?


----------



## izzi'smom

No complaints of belly pain, and he's almost himself again. TY for all of the support. I'm starting to feel overwhelmed by the boards again...so many sad stories.  On a related note, Izz has mouth sores. Coxsackie? Crohns? Her stools/frequency/urgency have also changed, although her bloodwork hasn't. Sigh. I want off this friggin' ride already. I knew it wasn't forever, but I had hoped to make it a bit longer.


----------



## Tesscorm

Just lots of hugs Angie!  :ghug:  :ghug:


----------



## my little penguin

:hug: Angie- never a dull moment
I will order one for you but they are on backorder for all IBD kids right now:ylol2:


I paid for one a while ago... but it never came:stinks:
let me know what you find on amazon.


----------



## NMMom

Angie, my fingers, legs, arms, and toes are all crossed that Izzi is just fighting off a little bug and she'll be feeling better in no time.  Keep us posted!


----------



## Crohn's Mom

Angie -
Hugs ! Lots and lots of


----------



## Crohn's Mom

Hugs !! 

Ugh - sorry , phone app screwing up !


----------



## jmckinley

Hugs! I completely understand. I haven't been able to get comfortable with things after Ryan's last flare. The roller coaster is exhausting. I hope she is feeling better soon.


----------



## DustyKat

Thinking of you Angie and your little ones. :heart: Sending loads go love and healing thoughts your way. :ghug: 

Dusty. xxx


----------



## Sascot

It does sound like some rollercoaster ride!  Sorry I seem to have missed loads of posts.  Glad Xavier's tummy pain is alot better, hope the ear infections cleared up.  Hope Izzi doesn't have too much of a flare and feels better soon!


----------



## Johnnysmom

((((Hugs))))) Angie..

My daughter suffered from Coxsackie constantly at that age.   I am not sure why but she would get terrible mouth sores and tummy aches with vomiting.  

Hoping that is all it is, and that she is feeling better soon.


----------



## Dexky

Hey Angie, how are they doing?  I hope things have improved.


----------



## izzi'smom

She still has sores and refused to help me make her cupcakes for her birthday party today (unheard of). Then she made the most beautiful DIY ice cream sundae at her party and gave it and her cupcake to me to throw away as she claims just thinking about the food makes her sick to her stomach. 
Xavi seems to be back to himself, and no c/o belly pain. Would love to follow up on the colitis to be sure it has resolved but refuse to scan him for no reason.  Am guessing his ears have been hurting him for a bit as he has been freaking out about getting water in them in the bath for weeks. oops!


----------



## DustyKat

How are your little one's doing Angie? :hug: 

Thinking of you all, :heart: 
Dusty. xxx


----------



## polly13

Hope she is doing better angie


----------



## jmckinley

Checking in to see how she is doing!


----------



## Dexky

Hey Ang, how are they going?


----------



## izzi'smom

Sorry I missed this...
Izz's labs came back good...iron a bit low but will see if I can alter her diet so we can skip the supplement-she hates it. CRP good at 1.3, so am guessing her symptoms are stress related. (She has to have a BM every time we arrive at the lab; the last time she was in the bathroom 4 times in the three hours preceeding our trip). I am going to look into equine therapy, have purchased some joke books (a HIT...TY to whoever suggested them), and sign her up for either swimming or gymnastic lessons. I took her to her pedi for intermittent fevers last month and she ended up with an ear infection and on nebulizers q4hours. She still has a cough but her ped tells me her lungs are clear...maybe it will be a chronic thing for her. 
TY for asking :heart:

Xavier has not had any more trouble since his ear infections cleared up. The radiologists strongly suggested a follow up CT after his GI symptoms subsided to be sure the inflammation and enlarged lymph nodes cleared up; I am disinclined because he is asymptomatic and due to the decent amount of radiation involved.


----------



## izzi'smom

Izz is thrilled to be starting swim lessons on Monday. 
We also made worry stones; we will keep them by the bed and give our worries to them nightly so we can sleep peacefully. 
I am attempting to get her into Yoga with me (they normally only offer it to kids 12 and up but are considering allowing her as it is for medical reasons) and will reconsider equine therapy after I see how swimming and yoga fit into our schedule. 
:heart:
Thank you for all of the support...(((HUGS))) to you all!!


----------



## Jmrogers4

Love the worry stones.  What a great idea.


----------



## DustyKat

Thanks for the update Angie.  

Good luck with the swimming lessons, I hope Izzi has a fab time. :hug: And the worry stones, how great is that! 

Dusty. :heart:


----------



## Dexky

What the hell are worry stones??

I hope she loves the swimming and yoga!


----------



## izzi'smom

We made them from clay. The concept is to give your worries to the stone so you don't have to carry them yourself.
Two nights ago she had a nightmare that woke her and she was too afraid to go back to sleep. So last night before bed we talked about the nightmare and she physically gave me the stone (as in giving away the fear of the nightmare). 
It may be that it is helping; it may also be a prop to encourage us to talk about her fears and worries. Either way I am all for it. 
 Sorry you asked lol?


----------



## Crohn's Mom

wow, what a great idea  with the worry stones !

Long, long ago, Gab was having nightmares so her best friend at the time made her a dreamcatcher. Gab swears that it helps her, and to this day it is hanging in her room at her apartment 

Sweet Izz deserves less worry :hug:


----------



## Dexky

izzi'smom said:


> We made them from clay. The concept is to give your worries to the stone so you don't have to carry them yourself.
> Two nights ago she had a nightmare that woke her and she was too afraid to go back to sleep. So last night before bed we talked about the nightmare and she physically gave me the stone (as in giving away the fear of the nightmare).
> It may be that it is helping; it may also be a prop to encourage us to talk about her fears and worries. Either way I am all for it.
> Sorry you asked lol?



Whatever works baby!!


----------



## izzi'smom

I just need to vent for a minute. 

Izz's dad got a DWI a couple of months ago. Which was bad enough, as one of his friends offered him a ride home that night. He is super fortunate that he didn't harm anyone. 

He lost his license for 30 days automatically. He is a mailman, and his work is making concessions to allow him to walk as much as possible so he doesn't have to take time off. He has a hardship license, and is allowed to drive to and from work. 

He is choosing to lose his license for a year instead of going on probation for 3. (Probation would include random alcohol urine testing and unannounced drop ins from a probation officer...in other words, not drinking). I am so crazily frustrated that I am driving the kids to and from lessons, dentist, pediatrician, school functions, and playdates for a year because he is an alcoholic. PLUS he upset with me for voicing this to him. 
AARRGHGHHH!

I have not shared the DWI with many people IRL per his request so I can't vent!! 

I hate that my life will always be affected by his disease despite us not being together. I hate it even more that my kids life will always be affected by it. 

Izz asked why he shakes (he gets tremors that are withdrawl related, I assume), and he told her it's because he has kids. Like she needs one more ^*$&@# thing to stress about. URGH! 

Sorry for the disjointed rambling...but I feel a bit better just typing it out. Again, the forum serves as therapy for me lol!


----------



## Farmwife

I'm so sorry to hear all that.
As inconvenient as it is, it truly sounds like your kids our best with you right now.
 Not being mean just stating my opinion.:hug:

Now I know of this happening to someone else and she made HIS family pick up the kids. Which made his family start to acknowledge:ybatty: his drinking.I would think you could do that once in awhile, if need be. It's not your fault he had he license taken away.


----------



## AZMOM

Ang - RANT AWAY!!!!!!!!!!!  

IMO it's more than warranted......love your heart. 

You are strong woman to remember he's their Dad (even though he's falling way more than short!) no matter what and not trash him IRL. 

Love you chickie -

J.


----------



## Lisa

Def rant away! What an ass!!!!!

If you need any info on the equine therapy, I chaeck with my contacts to see if they can recommend anyone.....if you were a bit closer I'd invite you out here instead!  I do admit, horses have been my therapy for YEARS.....no judging, love you whenever (especially if you have treats! lol).....

Hope to meet up with you this spring! I really need to see what classes I can get into in Oriskany!


----------



## Dutch941

Wow.  That is a lot on your plate.   I would be worried at this point if they were being driven by him.   It must be very scary wondering if he's safe to drive when his license was intact and he has the kids.  Keep your head up!


----------



## CarolinAlaska

I am so sorry to hear it, Ang.  My sister had similar problems with her kids' dad until he eventually dropped out of their picture altogether.  Not a nice thing.  I feel for you.


----------



## Sascot

Sorry you are having the extra stress!  My dad also drank all the time which is one of the reasons why my mom left him when I was 1 - he didn't binge, it was just part of his daily routine.  It took him over 20 years to realise how it was affecting his life and stop.  I only saw my dad a couple times a year though, so I never realised until later in my teens.  I hope poor Izzi doesn't worry about it too much - her dad probably thought he was being really funny about why he has the shakes.  Hope things don't get too exhausting having to do all the driving around


----------



## Niks

Bless you!! Your rant is definitely warranted!  

I think getting your ex's family involved to help out with kids is a fabulous idea if it is at all possible!!

I know there are some good guys out there, but I will never understand how some men find it so easy just to leave it all to Mum!! Mothers would never do that!;! Grrrrr

(((hugs)))

:ghug:


----------



## Dexky

What does his work say about his decision?  Are they going to accommodate him for a whole year?  Do they have a choice?


----------



## QueenGothel

Yes that totally does stink!  Terrible that he places blame on his kids for his DT's. I understand trying to keep it quiet bc of his embarrassment but being that he is not your husband anymore I think that is his problem not yours.  If I were in your shoes, I would totally state the obvious, like "if you want to keep this quiet, i would recommend finding away to get transportation for I am no longer responsible for your short comings"...But I am a mean girl!  I think him getting his family to take some responsibility is a great piece of advice. Since obviously he needs help.  

Sorry Ang like you need extra stress either.


----------



## Tesscorm

Vent away anytime...  It must be so frustrating and maddening for you!  :ghug: :ghug:

Don't know if it's possible, but I like the idea of his family being involved as well, if only to lessen some of your burden! :hug:


----------



## izzi'smom

His mom is great...she will come out when she has time. She is in her late sixties, works full time, plus does craft shows/works at a local Artisan Corner selling her husbands handmade soaps and candles. 
I *do* try not to trash him regardless. He will always be my kids dad, and some (sad) day they will realize he is an alcoholic. He is a wonderful dad in many other ways. Unfortunately he doesn't pay me the same respect, but I know that I can sleep at night. 
Paso...TY for the offer! I may take you up on it if I can't find anything...I will look into it in a month or two. Can't wait to catch up!!!
Dutch, we agreed when our kids were born to never have a single drink when driving them. He brings NA beer to outings when he does have to drive, so I am fortunate there. He will be having a breathalizer installed on his ignition. 
Carol, I have had the thought that my life would be easier. Terrible, I know. A friend with an alcoholic father told me the other day...sometimes an absent father is better than a crappy one. Pretty hard to hear, as I don't think he is a crappy dad, but her point hit home. Hard. 
Dex, he's getting a conditional. So I believe in NY it will allow him to drive for work. Otherwise I'm not sure. 
Mary, we have a wonderful sitter that has been driving him when need be. I just can't imagine asking her to continue to do it for the next year. UGH.

Thank you so much for all of the kind words....ya'll made me cry! :heart: :heart: I love you all!!


----------



## kimmidwife

Angie,
I am just catching up! I am so sorry you have to deal with this on top of everything else. Your kids are lucky to have you, such an excellent caring Mom!


----------



## izzi'smom

My grandmother passed away Thursday. It wasn't unexpected...she had been extubated and was on comfort care. Izz had only met her 2 or 3 times, and we weren't terribly close. 

Despite this, I asked Izz what her biggest worry was (after she told her secrets to her worry dolls). she said she was scared that all of her family would die and she'd be left with only her children. 

Meanwhile, two tragedies occurred way to close to home...a man shot 6 people and a K9 40 minutes away (in a tiny, crime-free town) and 30 minutes the other way, a man raped a child and killed her mother. 

http://www.huffingtonpost.com/2013/03/13/herkimer-county-shooting_n_2867414.html

http://www.syracuse.com/news/index.ssf/2013/03/cicero_man_charged_with_rape_m.html

How on earth do I reassure my worrying 6 year old? All I could think was that I'd promise her to be here for her and some wacko could come along. UGH. 

I did anyway. I told her that people are meant to be born, and to die, and that none of us know when, but it is my wish to see her grow up, and get married, and have that dozen children that she wants (!), and see my great grandchildren. 

Hate it when your kids make you cry lol!


----------



## AZMOM

Ang - I often think what our kids go through make them old souls.......

You are a great Mom and she's a great kid. Love you both from far away......

J.


----------



## DustyKat

Oh Angie...:ghug:...such a difficult time for you both.  

You have done wonderfully well hun and what you have said to Izzi is perfect. I know what we say never seems enough but being honest, at just right level, and telling and showing them that you will be there for them no matter what and that home will always be a sanctuary for them speaks volumes. 

:hang: Mum, you are doing great.  

Dusty. xxx


----------



## Sascot

Sorry to hear all that.  Have to say - what you told Izzi sounded just about perfect!


----------



## Niks

Bless you, as Sascot and Dusty said, what you told Izzi sounds perfect 

:ghug:


----------



## izzi'smom

DustyKat said:


> Oh Angie...:ghug:...such a difficult time for you both.
> 
> You have done wonderfully well hun and what you have said to Izzi is perfect. I know *what we say never seems enough* but being honest, at just right level, and telling and showing them that you will be there for them no matter what and that home will always be a sanctuary for them speaks volumes.
> 
> :hang: Mum, you are doing great.
> 
> Dusty. xxx


SO TRUE!! I have been searching for months for my parenting manual, but alas, I think the laundry fairy and housecleaning genie took it with them when they left!


----------



## kimmidwife

Oh Angie,
I am so sorry for your loss. You are Absolutly right it would be nice if there was a parenting manual! ( especially for teens lol)


----------



## CarolinAlaska

Hugs, Angie.  I am sorry for your loss and the terrible happenings in your area.  So sorry for your daughter to carry it all.


----------



## crohnsinct

Aw Ang - you don't need a manual...you wrote it!  Sounds like you are dealing with so much these days and still managing to handle it with such grace.  I am in awe!


----------



## Crohn's Mom

Oh Angie...big giant squishy hugs from far away !
I'm so sorry for the loss of your grandmother :hug:

You're such a fabulous mom and I think how you handled things with Izz is just perfect.
:heart:


----------



## Dexky

Just look at those beauties!!  I'd take parenting advice from you any day!!


----------



## izzi'smom

Bahaha, Dex...they may look good...its all smoke and mirrors. I will be paying for years of therapy for *something* I've done, to be sure! 

I was discussing Izz's lab results with her doc and he looked her up...it's been a year since her last GI visit...guess it's time. We'll schedule when her labs are due next month. 

Her labs are fairly good...CRP has crept up a bit but she has a fever and a cold right now...we have been able to manage her anemia via diet in lieu of supplements, and her kidney function and tacro levels are good. 

Worrisome is a low calcium level, especially considering the cavity she just had filled. 

Swimming I think is having the wrong effect...she cried for 20 minutes of her lesson last week as she didn't do her stroke well, nor is she good at putting her face in the water. I think that maybe her coach, while nice, isn't a great fit and I may put her and her brother in with the same teacher next month (her brother's teacher is super encouraging/matronly...Izzi's style). While I can recognize that Izz will have to learn with all kinds of people through her lifetime and in the future she will just have to "deal with it", due to the nature of the reasoning behind the swim lessons I am hoping to be able to intervene for her on this one lol. On a great note, her swimming has improved with just three lessons and I am encouraged by her progress.


----------



## my little penguin

Glad swimming is going well.
Mine have been doing it for years.
One started out as a rock( let to if the side of the pool and he would sink at the age of 6)
He is now on the swim team - just take it slow and let her enjoy the water.


----------



## Niks

She sounds like she's doing great in the water!!!  Had to have my two boys swimming together for About 18 months because my elder one would cry!!! He got there though.  Once her confidence has grown she'll love it!

Hope they got the right biopsies!! Good luck with that xx


----------



## Sascot

Glad things are going ok.  I struggled with Calcium for Amy - she stopped drinking milk at around 1 year old.  The dietician gave me a liquid calcium supplement for a while, but now I just use one from the supermarket.
That's great she's improving with the swimming, hope the change  in teacher helps the stress.  I was always in awe of my children who could swim well after a few months to a year.  I cannot put my head under water without holding my nose and can only do breaststroke :ylol:


----------



## DustyKat

Thanks for the update Angie! 

It is so great to hear that the Tacro is continuing to do its job and her body is tolerating it so well!  

I'm with you on changing swimming teachers. At that age it should be all about encouragement, fun and learning. 

Dusty. xxx


----------



## Dexky

I agree with Dusty, it was supposed to take her mind off the bad stuff!  

For Calcium, we were told to give EJ Tums.  We buy the generic ones but they are sweet and he doesn't mind them.  A little chalky but sweet

I wish we could stay away from the GI for a year!!


----------



## QueenGothel

So glad to hear the good news about Izzi, so nice to know she is doing well and controlled! Swimming is awesome, though we cannot afford lessons my sister has a huge pool and this will be the first year the deck and heater will be functional.  Looking forward to sitting pool side and teaching the kiddos how to swim and not sink!


----------



## izzi'smom

I am so thrilled I found two parents of children currently on Tacro! One is on it for Crohns; but his GI only wants him to use it for a year (he has only been on it a couple of months). THe other doesn't have Crohns; she has autoimmune enteropathy but has been on it almost all of her life (she is 8). Yippee!! It gives me faith that she can be on it a bit longer (which means [fingers crossed] a healthy Izz for a long, LONG time!!!!! 

"I wish we could stay away from the GI for a year!! "

Dex, I have become friends with him and see him regularly...so we discuss her care as the need arises and he has popped into the lab while we are there to say hi to her. I can only imagine we'd have had to follow up if it weren't for this...we're pretty fortunate!


----------



## polly13

Angie so sorry for your loss
Polly


----------



## DustyKat

I hope continues to do well on the Tacro Angie and that she can indeed stay on it for a long time to come! :ghug: 

Are the doses for the other two children similar to Izzi's? 

Dusty. xxx


----------



## AZMOM

If we stayed away from the GI for a year Id tap dance naked down the street (well not really but you get the idea ). 

Im all for the swimming!!!!!!

J.


----------



## izzi'smom

The trough levels are the same...dose is based on weight but varies according to labs.


----------



## Kimberly27

Great news on the medicine!  Here's hoping for a L O N G remission.

I'm sorry for your recent loss.

Kimberly


----------



## kimmidwife

Glad to hear about the other kids on it. Hopefully the good news continues!


----------



## izzi'smom

Izzi went to her ONE YEAR follow up today!!
All is well...PCDAI 10!
Her doc discussed her Tacro use with some peds GI's in Boston this past week. They AGAIN reiterated it is a BRIDGE therapy. When pressed, they claim that there is no documentation using Tacro long term for Crohns. (ummm...there aren't large, well documented studies for a LOT of drugs used for pediatric Crohns.)

We had a discussion regarding whether to dial back her therapy-that is, try another, lesser drug to see if something that didn't work before will work now. We also still haven't tried a few drugs...they are on the sidelines. 

After discussing it at length with her doc and her dad, we have decided to continue therapy for now. In my heart I know that if there is some awful, negative side effect down the road, I will never forgive myself. But for today, she has a childhood. She is making beautiful memories at six years old, and I plan to let her continue for as long as our Tacro luck will last. 

We will rescope at the end of summer (July/August) and revisit our care plan then, barring any changes before that. 

I met another parent that has a child on Tacro...she has been on it for eight years (for another autoimmune disorder) with no ill effects other than those related to doseage issues. 

Gives me hope...

I have been a bit busy at home, so absent here...but doing wonderfully!

pm me to friend me on fb!


----------



## Mehita

I'm soooo happy all is well! That's great news!


----------



## Clash

That is such great news. I'm so glad things are going so well and long may it continue!


----------



## Twiggy930

Great news!!!!!!!!!!!!

:banana::banana::banana::banana:


----------



## jmckinley

YAY!! Fantastic news! I know what you mean about worrying about the meds but being so happy that they are having a childhood! It's hard to be constantly faced with choices, but it sounds like she is doing so well. Enjoy it!


----------



## Dutch941

That's awesome news!  So good to hear!


----------



## Kimberly27

What joy!

Kimberly


----------



## Sascot

So glad to hear she is doing well.  I hope the Tacro keeps working for a long time!


----------



## Dexky

How often is she having routine bloodwork Ang?  It seems we're all just dealing with the best educated guess.  If it ain't broke.


----------



## Johnnysmom

Don't let the 'what ifs' of side effects down the road get to you Angie. Easier said than done, I know 

All meds were new at some point and somewhat unknown.  Sounds like you can take great relief in a child being on it for 8 years!   Just think of what new meds could be out for Izzi in 8 years!

Glad everything went so well and enjoy!!


----------



## Tesscorm

Great news!!!  So good to hear she's doing so well! :banana:  :banana:


----------



## izzi'smom

Dexky said:


> How often is she having routine bloodwork Ang?  It seems we're all just dealing with the best educated guess.  If it ain't broke.


We go monthly, Dex. I imagine after a year of normal labs I could probably take her less often...but its a bit reassuring to see normal kidney function and relatively low CRP.


----------



## my little penguin

Woohoo!! 
Great news.


----------



## Dexky

As long as Izzi doesn't fret the bloods, I'd go monthly forever


----------



## kimmidwife

Glad to hear she is doing well!


----------



## CarolinAlaska

Great news, I.M.!


----------



## izzi'smom

Pffft...her crp is elevated this month. It *better* b be a bug lol!


----------



## kimmidwife

Hopefully just a bug! When will they recheck it?


----------



## izzi'smom

After a couple of months of elevated crp, symptoms are back.

10/14 izz is having belly pain and 8-12 bathroom trips a day.

10/10/14 upper endoscopy shows mild gastritis. Colonoscopy shows moderate to severe inflammation with a perfect ti. Histology to follow, but it looks as if our time with Tacro is coming to an end.

I think we are going to do simponi, although we touched on stelara as well. He hasn't prescribed simponi yet so he'll be checking with the rep tomorrow. 

It was a nice run while it lasted.  lol now I have to make up for lost time-plenty of research for me to do on new options!


----------



## Maya142

If she is put on Simponi -- My (older) daughter took Simponi for arthritis, but anyway, she said the injection was MUCH less painful than Humira. Didn't burn at all! We did the pens but were sent the syringe once by mistake, and the syringe hurt even less than the pens (which she said didn't really hurt much at all).

SupportiveMom's daughter is also on Simponi, and I think she also found it much less painful.

Sorry to hear she's not feeling well, hope that changes SOON!


----------



## DustyKat

Oh man Angie  I am so sorry to hear this! :ghug: 

Gosh time flies and it is so fab that Izzi managed to get as long as she did with her ‘bridging’ treatment, bless her. :heart: Wish it was longer for you guys though. 

Sending you MEGA loads of luck with the next step of your journey! Good Luck! 

Thinking of you both. :wub: 

Dusty. xxx


----------



## kimmidwife

Sorry to hear the news! It is so hard when they come out of remission. We have unfortunately been dealing with this as well. Keep us posted on what you decide and how she is doing.


----------



## izzi'smom

Thanks for the info, Maya142! I was wondering if there was a difference-we did syringes with Humira.  I considered the pens (if I thought she'd do it herself, or if someone else had to give it), but I am thinking she wouldn't want to do it.


----------



## Sascot

Really sorry to hear that. Good luck with the next step!


----------



## Maya142

My daughter totally refused to Humira at first (now she does it because she's in college) but had absolutely no problem doing Simponi. She was much older than your daughter though.

Since she probably won't do it herself, I would get syringes since they really don't hurt much at all. S said they felt like a regular shot, kind of like methotrexate (but the needle is slightly bigger).

Incidentally, we are thinking of putting my younger daughter M on Simponi next - for both Crohn's and arthritis.


----------



## Farmwife

Oh Angie I sorry it had to come to an end but glad you both got a break for a few months. 

Is the school working with you or being difficult?


----------



## my little penguin

Big hugs 
So sorry to hear you need a different med.
Glad she got a little bit of normal for a while at least


----------



## AZMOM

Sorry Ang.  :-(  Stupid disease.  Sweet girl deserves so much better than that!

J.


----------



## Momtotwo

izzi'smom-I'm sorry you have to explore new med options for your sweet little girl. Keep us posted.


----------



## Tesscorm

Sorry to hear!   I hope it can be brought under control very quickly with the new med! :ghug:


----------



## izzi'smom

Thanks all. Farmwife we haven't had any issues per say. I dropped in to chat with the nurse last week-just a friendly hello-I wonder if my tone in my emails is off. I meet with admin next week regarding her 504. Still waiting on Simponi-doc suggested steroids while we wait but last time we used them they didn't touch her-I hate to try something for nothing. (If I thought they would help her to eat, I would-she has a huge appetite but sits in front of the food crying because it hurts too much to eat. ) 
TY, Maya, I will do that.


----------



## izzi'smom

1/7/15 after facing admission, we finally got an answer (her 3 month cough is likely allergies) and got our loading dose of simponi.

2 shots-one in each leg after icing ten minutes. We chose to use injectors as izzi has shown some interest in injecting herself. She claims she hardly felt the injection. That evening she claimed she had less pain. (I wondered if this was partially for to the fact that the injection was far less painful than she anticipated). However, 4 days later she hasn't complained once of pain and is in the bathroom once daily and not at all at night (after weeks of pain, 8 trips a day, and regular accidents). 
She will get a second dose two weeks from the first and labs at three weeks.
Right now she is still on tacrolimus but if she continues to do well I may discounting it.


----------



## Maya142

So glad it went well! S loooooved Simponi shots (compared to Humira anyway). 
It's great that she had a response right a way, fingers and toes crossed it continues.


----------



## Farmwife

Wow, awesome! I hope it's the answer for her.
I know Remicade worked like that for Grace.

Hugs


----------



## DustyKat

This is so fab to read Angie! 

I hope with all my heart that this works wonders for Izzi, bless her. :heart: And what an absolute champion she is! :kiss: 

:mademyday: 

Dusty. xxx


----------



## AZMOM

:dance::dance::dance::dance::dance:

Exciting stuff!!!  Yay, for Izzi!

J.


----------



## Sascot

Great update! Hope it keeps going well


----------



## my little penguin

Woohoo
Love to hear it


----------



## kimmidwife

Very glad to hear the news!!!!


----------



## Brian'sMom

So great to hear!!!!!! YAY!!!


----------



## izzi'smom

Spoke too soon 
Quit Tacro 1/16
Second dose of Simponi 1/21, restarted Tacro due to return of symptoms. 
Elevated CRP and sed rate, and the rest of her labs are just basically abnormal. 
I'm going to see if an increased dose is an option, or if it may take longer for it to kick in (doubtful). otherwise, on the lookout for some more drugs!


----------



## crohnsinct

Oh man ang!  This just sucks. I wish I had some pearly words of wisdom.  All I can say sis you hAve been here before and with your tenacious pursuit and adorable izzi's courage you have made it through. Hopefully this time will be a little easier!


----------



## DustyKat

Ugh no Angie! I am so, so sorry to hear this.  

I hope the tacro can weave some magic until you can find a longer term solution. :ghug: 

Sending absolute MEGA loads of love, luck and healing thoughts your way! :Karl: 

Thinking of you both. 

Dusty. xxx


----------



## kimmidwife

Sorry to hear! IBD stinks!


----------



## Farmwife

I'm so sorry to hear this also. These young ones have such hard times.

HUGS


----------



## my little penguin

Big hugs to you and your dd.
Fingers crossed for improvement


----------



## Maya142

It took my daughter several doses to respond to Simponi. That was for AS, and the dosing schedule is different (I think?) but I would imagine it would two doses is really too soon to judge.

What dose is Izzi on? We have discussed Simponi for my younger daughter, and both her GI and rheumatologist thought we would start out with 100mg every 2 weeks. My daughter is much older than your though (about 92lbs) and that's probably the adult dose.

Hang in there, sending hugs!


----------



## CarolinAlaska

Angie, I'm sorry she is not responding well to the new med.  I hope it kicks in soon.


----------



## Johnnysmom

Hope Izzi is feeling better soon!!:heart:

Big hugs to you momma!:ghug:


----------



## Mehita

Sorry to here this. She seemed to be doing so well. I hope you get answers and solutions soon!


----------



## izzi'smom

She was switched from every four weeks to every three weeks on simponi (supposed to be every 2 but insurance approved every 3). I delayed her third dose until yesterday due to a 103 temp last week. Our doc is also trying to get preapproval for another out of state second opinion. 
She is having regular accidents and is beat-we have been sledding, skating, and snowshoeing this week and her fatigue is so obvious but she still wants to do stuff...Love her spunk!


----------



## kimmidwife

Glad to hear about her spunk!
I hope the simponi kicks in soon. Where are you guys looking for another opinion?


----------



## DustyKat

Thanks so much for the update Angie. :ghug: 

Your lass surely is an amazing young lady and one that so deserves a long and lasting break from this bloody disease. Sending MEGA loads of luck that the Simponi gives her this! 

Thinking of you! :heart: 

Dusty. xxx


----------



## izzi'smom

Thanks, ladies!
Kim, our GI has requested that we see Dr. Hyams in Hartford CT. I hear he specializes in IBD and he has had others from our practice seek his opinion. I have a feeling we'll be approved to see him...but it takes time, which is fine. 
An added bonus is visiting another forum member while we are there...Izzi is beside herself to meet other Crohns kids her age.


----------



## SupportiveMom

D has been on Simponi now since August I think now. It is certainly easier for her to use. No allergic reactions & I can certainly see her keeping to schedule when she is out of the house on her own. It took about 6 weeks to feel a difference with Simponi. I think this drug is the only reason she was able to avoid surgery in October. This was the only drug that made a vast difference in healing in her colon. Seeing the MRI images from March 2014 to October 2014 was like night & day. I hope you see positive results on it.


----------



## izzi'smom

The last two days she is killing me-we went cross country skiing at the park across the street yesterday (well, they skied. I hiked in 2' of snow, taking turns picking them up when they fell). She had been sitting for a few minutes, so I went to check on her, and she was crying because she had to go and couldn't hold it, and that "i hate my crohns, every time I am having fun it gets ruined". I got back to her brother who was crying because I left him ( he fell in the meantime).
Tonight (we were going to ski again but decided against it after yesterday) she was sooo tired and I had tucked her in-she was just falling asleep and had to run to the bathroom. She asked me to tuck her back in and was crying again.  

I wish I could trade places with her! <3

This consult can't come fast enough!


----------



## Farmwife

I feel for you Angie. :hug:
Same this happen with sledding for us.
So hard on them and us.


----------



## DustyKat

Oh man Angie :ghug: this all sucks so bad. :voodoo: 

Thinking of you both and sending tons of hugs and healing thoughts. :heart: 

Dusty. xxx


----------



## Momtotwo

Angie,
Why Hartford instead of Boston Children's? Hugs for both of you.


----------



## Momtotwo

Also, are you aware that Dr. Marla Dubinsky is at Mt. Sinai now? Would that be an easier approval since it is in-state?


----------



## Sascot

So sorry to hear that. Hope they can help her soon.


----------



## izzi'smom

Thanks, all. 
Momtotwo, we've been to Boston children's twice-they recommend a permanen subtotal colectomy. While I am not fully against this option, she was in remission on tacrolimus when they wanted to do the surgery, and I was reluctant. Now that her remission has ended, I would like to exhaust all possible options before a colectomy, as she will still suffer from crohns plus deal with an ostomy. 
Haven't heard of Dr dubinsky. From what Iunderstand Dr. Hyams specializes in ibd and comes highly recommended-and out of network docs are all equally difficult to get approval for-we just have to play the insurance game !


----------



## Momtotwo

I have head of Dr. Hyams (prob when I researched drs in the northeast when we were seeking a second opinion, too.)  I understand why you want a third opinion. I would do the same.  Actually, I might be doing the same very soon. 

Dr. Dubinsky was at Mt. Sinai in CA and is considered one of the world experts on IBD in children. She has also been involved in med research and early- onset IBD. I don't know if her approach would be any different than Boston Children's since i haven't taken my child to see her yet.  Mt Sinai is in-network for us and thought it might be on your list, too, since you live in NY. 

I hope you get approval to see Dr. Hyams, soon.


----------



## kimmidwife

Angie,
I have also heard excellent things about Dr. Dubinsky at Mt. Sinai. We tried to get in with her while we are in New Jersey but they don't take our insurance at all.


----------



## izzi'smom

No, our insurance picks and chooses in the state lol. He's technically more of a fifth opinion, plus phone consults, but if we are at that point again in the near future I will add Dr dubinskyt to my list . 
I met Dr hyams this weekend- like him so far-fingers crossed for approval.
Izzi has chosen to do her learning fair project on crohns...<3
Eta wondering what insurance? What a shame. We have mvp-I know we have a decent policy so I am counting my blessings.


----------



## izzi'smom

Izz had Simponi on 3/13 and 4/3. I found it interesting that the night of 4/2 she was up almost every hour in the bathroom...the night of 4/3 she was up twice. 

Her fatigue still bothers me, and she is down 5# since her well child visit in February (after losing 13# in the 12 months preceeding that). I have a feeling she is still doing OK on the charts, so I'm sure it won't concern her doc. 

I came away from our consult with a few things...
1) Try harder to get her on pills-he'd really like her to try uceris to get the steroid benefit with less side effects. 

2) Get her off Tacro/Bactrim as it is less effective and not worth the risk 

3) Start her on Entyvio 4 weeks after d/cing Tacro/Simponi. 

I will call her regular GI after they've received the summary. 

He also says that most people that had no initial effect from Remi or Humira won't respond to Simponi, which makes me fairly comfortable stopping it. (It seems to decrease her nocturnal bms immediately following a dose, but this could be coincidental).


----------



## Maya142

Sorry to hear she has to switch but hopefully Entyvio will be her miracle drug!
Kind of makes sense though - if she didn't respond to Humira/Remicade, that then a response to Simponi is unlikely. I guess increasing her dose isn't a good option?

Fwiw, M responded quite well to both Humira and Remicade for a while, which is why we chose Simponi instead of trying something like Stelara.

Good luck!


----------



## izzi'smom

Thanks Maya! We've decreased the time between doses but her gi isn't comfortable increasing her dose...again, she's the only patient in the practice on it. The nurse mentioned another patient just got approved for entyvio...not the first-yay lol. They only use uceris for ee though, so again we are on a learning curve.


----------



## kimmidwife

Good luck with starting the enyvtio!
Expect a few days of not feeling well after the infusion. That is what we are finding though I hear it gets better with time.


----------



## Brian'sMom

My son gets Entyvio every 4 weeks instead of 8... He has ZERO side effects after the infusion. He has twice gone from the infusion straight to school and play Jazz band for 4 hours at the jr varsity and Varsity basketball games. 
That being said.. We can't seem to get off Flagyl/Cipro combo.. When on that he feels great... off that, we have rectal cramps and drainage. I just wonder if my poor son's rectum is far too damaged for any medicine to heal it. We had normal labs from Dec thru March 12th.. went off the antibiotics for 3 weeks and the inflammation creeped up just a bit. Our Mayo GI says Vedo is slower than most meds to work,..but has been winning the race in the long run. I'm with you in trying to keep the large bowel. And our Doctors agree that with his age... Hang on and wait and see. It's just such a pain in the neck. Having it in front of us all the time. Somedays I just want it out!! But its not my body to make that decision!! My son lives with a bag now... and small bowel is fantastic. No issues but that darn rectum. Its scarred and narrow... and sigmoid colon is strictured enough that scope can't get thru. So if Vedo ever helps the rectum... plan is to remove sigmoid colon and reconnect. But this is surely years away. Good Luck Angie. It stinks having refractory crohn's kids. I've been reading about Celgene....


----------



## Maya142

There was recently a medscape article called "Current, New and Future Biological Agents on the Horizon for the Treatment of Inflammatory Bowel Diseases" 

It has a great image of all the things in the pipeline including IL 23/12, IL 13, IL 6, Etrolizumab (similar to Vedolizumab), JAK inhibitors (like Tofacitnib - Xeljanz, already approved for RA), Laquinimod and even more.


----------



## Maya142

Sorry, didn't know how to make the image smaller!


----------



## crohnsinct

Maya142 said:


> Sorry, didn't know how to make the image smaller!


Are you kidding?!  With my old lady eyes, I need it even larger than that! Do have the link to the article?  If not I will just search for it.


----------



## Maya142

I don't have the link (I forgot to save it - there's my old lady memory :lol but if you google the title I'm sure you will find the article. It's a very recent article - published in March 2015 I think, so it should be easy to find.


----------



## izzi'smom

Kathy, I feel your pain! Such a struggle to keep them feeling well-ish. Today marks three years since her last hospitalization...despite Dr. Hyams dislike of tacrolimus, I wouldn't trade the last three years to reduce her risks. Wishing treatment was easier for all'll of them, or at least that it worked regularly. 
Thanks for the link, Maya...I'll add it to my reading list. 
We are still waiting for the report to reach izzi s gi here-I am shocked they didn't fax it but hopefully it will arrive soon. 
Izz has managed to swallow 2 mini m and 's...No pills yet but we keep trying!


----------



## my little penguin

We used 
Mini m&ms
Rice
Tic tacs
Jelly beans 
With a favorite toy in the package pulled out and put in front for each swallowing session 
But not opened till the pills were swallowed.
It took two weeks but worked well at 7.5 years old 

Good luck


----------



## Crohns08

When my Dad was getting me to learn to swallow my pentasa it helped when he covered it in pudding. It went down really easy and the pudding kinda acted like a lubricant. He would mold pieces of bread in smaller sizes and then I worked my way up to the Pentasa. Hope it helps  We also used tic tacs too.


----------



## izzi'smom

Ty! We have tried a few times over the years and she has come so far! She realizes what she needs to do but I think there is still a bit of a mental leap to get over-knowing that they are pills and not m and ' ms. I told her she has to try to swallow a capsule once a day-if she can't get it down I open it/dump it in her bactrim and we try again the next day. I tend to put a lot of pressure on her-this approach works better (today she tried to swallow the pill while I was in the shower-I had forgotten and just told her to take her meds-she came in to let me know she tried but couldn't get it down. 
I actually don't think it is a game changer-I know Dr hyams wants her on budesonide but if she can't do pills she can do prednisone and we will continue to work on it. I think she is ready, though.


----------



## Sascot

It is a big leap to try pills. I ended up throwing the capsule so far down my son's throat that he had to swallow! He asked me to do that for every one after that, lol


----------



## izzi'smom

Lol...She would freak out, but that is something I would totally do! She is up to 9 pills a day at the moment-but I keep telling her no pressure lol. Twice this past week we were at the park for under an hour and we had to run home twice-ready for a change!


----------



## CarolinAlaska

Poor girl.  My daughter wouldn't want to go back if she had to go home once.  Kudos to your girl for trying to keep on having fun...


----------



## my little penguin

We emptied the capsule in applesauce pudding etc
But then had him try to swallow the empty capsules 
Less stress that way 

There is also the oroflo cup
So she can swallow without having to learn to swallow


----------



## my little penguin

http://oralflo.com

Never tried it but might work


----------



## izzi'smom

We own the cup, and the pill glide spray too lol.  didn't think of her doing the empty capsule-great idea! Carol, we have the discussion often about how we allow the disease to affect her life...not the hand you're dealt but how you play it. It isn't feasible to never let crohns affect your plans but I hate to allow it to run her life! That being said, it is a delicate balance and I sometimes feel that I push her too much. I'm grateful that we have a five acre park across the street (and can't wait for them to open the bathroom for the summer lol)


----------



## MamaHenn

Good luck on getting her to swallow pills. We had two weeks of pure torture with my son. He physically could do it, it was all mental.  I actually emailed his teacher at the time (he was in 5th grade and had a male teacher that they all really liked, i.e. the "cool" teacher).  His teacher took him aside and talked to him and then showed him how he takes his medicine with no water! ;-)  the very next day my son took his pills and was so proud to go into school to tell his teacher.  Whatever works


----------



## CarolinAlaska

izzi'smom said:


> We own the cup, and the pill glide spray too lol.  didn't think of her doing the empty capsule-great idea! Carol, we have the discussion often about how we allow the disease to affect her life...not the hand you're dealt but how you play it. It isn't feasible to never let crohns affect your plans but I hate to allow it to run her life! That being said, it is a delicate balance and I sometimes feel that I push her too much. I'm grateful that we have a five acre park across the street (and can't wait for them to open the bathroom for the summer lol)


It would make a difference if we were closer to the park.  As it is, we're 2 miles away.  Thankfully our park has flush toilets.


----------



## izzi'smom

We like to hike-there are some fabulous parks and waterfalls here-but I have a feeling we will be doing a bit less this year. That being said,  I always have spare everything on hand (for her lol...didn't help when we visited a park right before her out of state apt. She said mom there's a hole in your pants. Four inch tear, showing my beautiful link underwear. Wore my scarf around my waist for the consult lol)
She tried an empty capsule today-they are tough, as they float !

Her doc got the faxed report today (almost 2 weeks!) But was busy with patients-I will find out if we need an apt our he will just rx her some new meds.


----------



## my little penguin

Yeah floating is an issue but less pressure on the kiddo
Have her tilt her head down to drink /put it in 
Then have her push her head back to swallow quickly
Once you get the floating pill down the others are a piece of cake


----------



## izzi'smom

D/c tacrolimus today, start uceris Monday.

She swallowed an empty tacrolimus capsule yesterday (ty mlp)-my fingers are crossed she can swallow her steroid! If she is still struggling after a week I will request prednisone instead.


----------



## my little penguin

Good luck with the pills


----------



## Maya142

Good luck with Uceris!


----------



## CarolinAlaska

I hope the Uceris does the trick!


----------



## kimmidwife

Hope the uceris works!!!!


----------



## izzi'smom

Day three of trying to swallow uceris twice a day...No go. She has been home from school all week a s she is up 4-8 times a night in the bathroom-between fatigue, bathroom visits, and pain I'm reluctant to force her to go. 
I truly think she can do it...She is sooo afraid. 

We had a super frank discussion about untreated crohns and the risk of colon cancer (the discussion began with her complaint about trying new meds). Part of me feels terrible to discuss cancer risks with an eight year old, but it is a reality for her and as she matures and takes part in the decision making process she will need to understand her disease. 

Hopefully I'll be back to post soon that she has done it...if she hasn't gotten it in a week will ask for prednisone.


----------



## my little penguin

Hugs for trying

Telling her it took DS every bit of a week to learn 

Good luck


----------



## kimmidwife

Good luck! The pill floating trick worked for my second daughter to learn. Caitlyn used jello.


----------



## Sascot

Good luck, hope she manages


----------



## izzi'smom

We are ready to throw in the towel. She's tried for over a week to swallow uceris, and managed to get a pill that was cut into fourths by her dad down once, but hasn't been able to do it again. She cries twice a day when it's time to try. We have tried all different tactics to get it in her whole. 

She is up every two hours at night with bloody d, has terrible fatigue, and a 101 fever. She opted to stay home from school today despite a wonderworks field trip-I'm just done. She tells me she wishes she wasn't alive. Time to move on (and get some therapy). I'm tired of being the bad guy. I have a call in to the gi to put her back on pred.


----------



## DanceMom

That is unimaginable.  Prayers for your baby.


----------



## crohnsinct

Oh Ang!  What an horrible Crohn's day!  I am so sorry.  

Where are things with the Entyvio approval and processing?


----------



## my little penguin

Hope pred kicks in soon for her to give her some relief


----------



## Maya142

Really sorry to hear, your poor little girl. Hope the pred works like magic :ghug:


----------



## pdx

So sorry your daughter and family have to go through this.  Hope the pred helps fast.


----------



## Tesscorm

So sorry you're all going through such a tough time.  I hope the pred helps quickly and you all get some relief.  Lots of hugs... :ghug: :ghug:


----------



## izzi'smom

Never thought I'd ask for pred-lol. I will still have her try to swallow a prednisone pill twice a day, but if she can't I'll crush it in applesauce. Less pressure. 
The gi decided to contact the manufacturer to verify the dose recommended by Dr Hyams. As entyvio isn't recommended for pediatric use, they declined to advise him. Seems they were waiting on this info before proceeding with the insurance company. #bang head here
Ty for all of the kind thoughts...


----------



## kimmidwife

So sorry to hear! We had one of those weeks last week! Prayers for you both! Crohn's sucks!!!!


----------



## Sascot

So sorry to hear that. Hope things get sorted soon


----------



## Brian'sMom

izzi'smom said:


> Never thought I'd ask for pred-lol. I will still have her try to swallow a prednisone pill twice a day, but if she can't I'll crush it in applesauce. Less pressure.
> The gi decided to contact the manufacturer to verify the dose recommended by Dr Hyams. As entyvio isn't recommended for pediatric use, they declined to advise him. Seems they were waiting on this info before proceeding with the insurance company. #bang head here
> Ty for all of the kind thoughts...


Angie, I haven't been on here for so long. So sorry to hear about sweet Izzi. Does the pills she is trying to swallow taste bad? I know prednisone is very bitter if it stays on the tongue. As for the Vedolizumab, they give my son the same dose they give adults. He is 15...but only 73 lbs, and 5'...


----------



## izzi'smom

Ty briansmom-that is what the gi we consulted recommended, and izzi and Brian weigh nearly the same. She was trying to swallow uceris, which is enteric coated and not bad. Now I am making her try to swallow prednisone tablets, which are terrible, but I really want her to practice so when we DON'T have an alternative, she is ready. (I just crush the pill after she falls to swallow it). 

She has not been back to school yet- 101 fever Wednesday and fatigue/cough/nasal congestion today-hopefully tomorrow! We have had fantastic weather, so she is enjoying her time off a bit too much lol


----------



## my little penguin

Hope the pred kicks in soon

I know it's a drug I love to hate 
DS is still on it after three weeks 
So want him off pred


----------



## kimmidwife

MLP,
We are so there with you! So hate the pred! 
Izzie,
Hope she feels better soon!


----------



## momoftwinboys

Hoping izzie is feeling better. Hang in there


----------



## kimmidwife

Angie,
   I just saw something cool on Facebook on a page called kids conquering Crohn's. They suggested to help kids who can't swallow a pill, wrap the pill in the top of a fruit roll up and they eat swallow the pill with the fruit roll up. I tried to find a link to the page but couldn't.


----------



## Farmwife

Grace's learned to swallow using pred.
She was allowed to bite it.
Of course she hated the taste but it took about 2 weeks to learn to swallow.
First she chewed it, than bit it in half and then could swallow.
Always gave her a piece of candy afterwards.:wink:


----------



## izzi'smom

Our pred pills basically melt when wet-a bit gross. She still hasn't mastered it. She has attended half days of school this week-she has pain so bad she can't make it Ty though  whole day (although we don't just sit at home, which I feel bad for). She has been completing the work the teacher gives her, but I think I need to pull her 504 and have someone in the school make sure she is getting everything she needs. We upped her pred from 20mg to 25-she is still having 14 bathroom trips daily. Entyvio is in the insurance pipeline.


----------



## izzi'smom

Entyvio was approved-her first infusion was Monday. I will very cautiously say I think things are improving- she used the bathroom once last night (she is usually up every 2-3 hours.) I was expecting to wait fourteen weeks for results.

Izzis dad got her a dog a week and a half ago (we share custody, just like the kids lol) and I think it has done wonders for her disposition-she is sooo much happier! 

She was approved for a tutor but they could only find someone to tutor her at the school, so we didn't utilize it. 

I got her md to prescribe massage therapy but we haven't fought insurance to cover it. She and I will get a couples massage with a gift certificate I have...we 'll go from there. 

Hoping things are looking up for her...


----------



## QueenGothel

Just checking on Izzi.  Best of luck with Entyvio.  Hugs

Mary


----------



## CarolinAlaska

That sounds great!


----------



## izzi'smom

Dropping in for a quick update. I occasionally log in and catch up with you all but not posting. 
Izzi hit the one year Mark on entyvio in June. She is feeling fairly well with occasional nausea, pain, and fatigue. She has put on a bit of weight-unsure if it is hormonal/age related or drug related. Her last scope looked better than ever, but microscopically shows new inflammation, which is worrisome. 
Think of you all often! <3


----------



## Farmwife

Thanks for the update. 
I'm glad things are stable for now. 

Hugs to you both.


----------



## polly13

Good to hear your update - glad she is doing ok.


----------



## kimmidwife

GLad to hear she is doing okay and to hear your update!


----------



## izzi'smom

Dropping in to say hello and update this dinosaur thread! 

Izzi has been feeling rough the past couple of months-high inflammation markers, repeated illnesses, pain, nocturnal stooling, fatigue. We're having levels drawn in a few weeks to see how Entyvio is treating her/if she has created antibodies. She is being tutored at home (and her teachers are amazing this time around) which is helping tremendously. Entyvio has gotten us almost two great years, so I can recommend giving it a try, and I am secretly hoping we can up her dose or decrease the time between doses to get a while longer from it!


----------



## Maya142

Sorry to hear Izzi is not doing well anymore . I hope you're able to stick with Entyvio - I know some parents have mentioned going to infusions every 4-6 weeks instead of every 8 weeks. Maybe that's an option?

Can I ask - how long did it take for Izzi to respond to Entyvio? My daughter is (hopefully) going to start Entyvio soon (if insurance cooperates). She's on steroids now and really wants to get off them. Her GI has warned her it could take a couple months before it works.


----------



## my little penguin

Sorry you had to come back
Hope a dose increase or frequency can make things last a little longer.


----------



## kimmidwife

Hi Angie!
Great to hear from you but sorry Izzie is not doing great. Caitlyn did pretty well on Entyvio for a year and a half. Her doctor moved it from 8 to 4 weeks which worked better for her.
Unfortunately they started causing her really really bad migraines so we have had to stop it. We are about to start Stelara.
Wishing you and Izzie the best!


----------



## CarolinAlaska

I'm sorry she's not doing as well.  I hope a dose adjustment does the trick.


----------



## Tesscorm

Hi Angie, I'm sorry too that she's having a setback !  I hope it can be resolved with a dose change.  Would she consider doing a round of EEN to help get her back into remission?

Good luck!  I hope whichever route you go gets her back to feeling good!


----------



## izzi'smom

Maya142 said:


> Sorry to hear Izzi is not doing well anymore . I hope you're able to stick with Entyvio - I know some parents have mentioned going to infusions every 4-6 weeks instead of every 8 weeks. Maybe that's an option?
> 
> Can I ask - how long did it take for Izzi to respond to Entyvio? My daughter is (hopefully) going to start Entyvio soon (if insurance cooperates). She's on steroids now and really wants to get off them. Her GI has warned her it could take a couple months before it works.


Her response was immediate. 
Even still, she goes into the infusion feeling terrible, and heads home worn out but feeling better.  wishing the insurance fairies have mercy and that entyvio is your answer.


----------



## izzi'smom

Tesscorm said:


> Hi Angie, I'm sorry too that she's having a setback !  I hope it can be resolved with a dose change.  Would she consider doing a round of EEN to help get her back into remission?
> 
> Good luck!  I hope whichever route you go gets her back to feeling good!


We've tried EN without success in the past. She's barely eating because of pain-down to one meal a day. Much of it makes her nauseous.


----------



## Sascot

Sorry to hear things aren't going well. Hope you can just adjust the dose to bring things under control


----------



## izzi'smom

So after a MRE last year we discovered her pain/nausea was likely gastroparesis related, and she tried eryped with some success. She did well until Christmas, when she started having more pain and frequency. Her colon is much like it was, with diffuse inflammation throughout. Upper endoscopy was good, although her esophageal sphincter was so narrow he was unable to place a pill cam despite multiple attempts. We are waiting to hear from Hyams if perhaps we can try upping her Entyvio despite her trough levels looking good and no antibody formation.


----------



## Maya142

Sorry to hear she is struggling. My daughter has Gastroparesis and after a lot of trial and error, we figured out a particular brand of erythromycin worked better for her. EES worked well, and tasted better. Eryped did not work as well for her. EES is also bright pink .

She is now on Domperidone and doing very well on it. Definitely better than EES. I think BCH has a clinical trial for Domperidone.

Stelara might be an option, if upping Entyvio isn't one. Sending hugs :ghug:.


----------



## my little penguin

Same here Ds has gastroparesis 
Eryped did not work well for him 
He does better on e.E.S. Granules 
He has been on it for 2-3 years 
He does drink half his calories in formula (neocate jr chocolate orally -no tube)
This helps him since even with ees he can’t eat enough 

Maybe that’s an option 

Hope her gut heals soon.


----------



## CarolinAlaska

I hope she can find a sweet set of treatments to help again.  What are they going to do about that sphincter?


----------



## izzi'smom

The gastroparesis doesn't always bother her. Last summer she only took eryped before a large or fatty meal. The pain she's having now is despite fasting (I can't convince her to eat breakfast). 
She isn't losing weight (she is actually overweight) so I can't complain. 
Her doc isn't concerned about the sphincter.


----------



## CarolinAlaska

izzi'smom said:


> The gastroparesis doesn't always bother her. Last summer she only took eryped before a large or fatty meal. The pain she's having now is despite fasting (I can't convince her to eat breakfast).
> She isn't losing weight (she is actually overweight) so I can't complain.
> Her doc isn't concerned about the sphincter.


Jae won't eat breakfast either.


----------



## izzi'smom

So she's down about ten pounds. Doc hasn't given us a treatment plan (initially called him 12/20...he ordered fc, labs at my request, and scoped her, but zero meds), so I threw a fit and we're seeing another GI in the practice. He'll see her nexr t Wednesday after her infusion.


----------



## Maya142

Poor Izzi!! And way to go Mom for getting them to pay attention. Completely ridiculous that you had to wait so long just to hear back!


----------



## crohnsinct

^ YEAH! 

Any word from the other doc who was giving you an answer on whether or not you can increase Entyvio?


----------

