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Crohn's Disease Forum » Parents of Kids with IBD » Much Ado About Nothing! eh!


 
03-06-2013, 08:18 PM   #1141
Clash
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Tesscorm, as I read your OP about the iron I was thinking the same as you, maybe it just hasn't been long enough for the stores to build up. I hope they call with all the info tomorrow and don't leave you wondering for a couple of days!! Hugs!!!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-06-2013, 10:38 PM   #1142
Crohn's Mom
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Ummm Tess ~ you sound like my college kid !
Take your supplements and wait for your blood results (and doctors!) to tell you that they're no longer necessary !!

Hope it's just a miscommunication between docs tho !
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Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
03-07-2013, 08:46 AM   #1143
Tesscorm
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Tracy, I was thinking the same thing... I'm constantly on top of both my kids to take their vitamins, etc. and then there's me...
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-07-2013, 11:05 PM   #1144
Jmrogers4
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Well I guess we will be clothes shopping this weekend and not for myself. Jack can't button any of his pants. These are the ones I had to have altered so they would fit him around the waist.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-08-2013, 03:03 AM   #1145
CarolinAlaska
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Awesome. Great problem to have! Better get some long ones cuz I'm praying he's gonna start shooting up soon too!
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-08-2013, 09:29 AM   #1146
Tesscorm
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Woohoo!!! Awesome news!!!
03-15-2013, 11:13 AM   #1147
crohnsinct
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So we finally enrolled O in the Remistart program. We get a lot of correspondance from the Remicade people and EVERY time they send us a letter, approval, the card etc they also include their ginormous Medication guide with all that mice type and the listings of all the things that can go wrong and probability and such.

How come they take every opportunity they have to send you this thing? Is it required by law? If I wasn't a little skiddish before I certainly could become so now...it is almost like they are CYA'ing or something. And now that I think of it, when O first started infusions, I got all this same stuff in the office, then by mail from Remicade and then by e-mail.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
03-15-2013, 11:25 AM   #1148
Tesscorm
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Have to admit, I usually LOVE dealing with people/organizations who are efficient, offer lots of info, available to answer questions, etc., etc. but I have also found the remicade experiences just a little scary!!! GI put me in contact with a nurse from BioAdvance who has been super nice and helpful, dealt with insurance, etc., then the people from the infusion centre have been really nice, calling to schedule, offering info, etc., then the pharmacist called to offer information, give me their hours, run through all Stephen's other meds and supplements, said if I have questions to call them and they can reach the GI when necessary, etc., etc....

Hard to explain what makes me nervous about it but it's like they're all SO nice and helpful that there must be some reason for it?!?!? and, yes, I know I sound a bit stupid and paranoid! (maybe I'm just not used to such efficiency from our medical system )
03-15-2013, 12:13 PM   #1149
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Grrrr...H has been SO good about taking his iron supplement...and now he is back to fighting it again! Can't bribe him with dollars or BBQ chips. *sigh* I will lay off him for a couple of days and hope that he resumes compliance.
03-15-2013, 02:50 PM   #1150
crohnsinct
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Tesscorm: feels a little cult like huh?

Henrietta: BBQ chips?! I would do ANYTHING for BBQ chips. ugh...maybe time to up or change the anty.
03-15-2013, 03:25 PM   #1151
Tesscorm
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Crohnsinct - YES!! I think that is what it feels like! It may be because I never wanted into this 'club' but I'm there and now everyone's trying too hard to convince me how great it is to be there!

Since I am 'there', I'm certainly grateful that it's all so efficient and easy but just can't help that I'm not getting the 'warm and fuzzies'! (...Perhaps my hubby would just say 'Oh, she's never satisfied!' )
03-15-2013, 03:31 PM   #1152
crohnsinct
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LMAO! Come off it. I am in that club and you know you practically begged your GI to let you in so you could be just like me

Bet if they served you wine at infusions you wouldn't bat an eyelash.
03-15-2013, 03:36 PM   #1153
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A little bit of wine, a couple of Marines at the door, a little footrub... hmmm... I could be convinced!
03-15-2013, 03:36 PM   #1154
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Wine and BBQ chips? I'll join
Don't we all want to be like you CIC - Wine, poles, firemen (A girl can dream)
03-15-2013, 04:25 PM   #1155
Clash
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Haha! CIC just because you bring the bottle in your purse to the infusions doesn't mean they are serving wine!!

I'm in that club, and get this I just let them give C an infusion at 3.5 weeks last month...I had valium for that though!

Joining sucks but the membership does have the benefit of all the other wonderful remicade Moms that will vent, cry and drink right along with me.

Oh and I just made a new email address and let the hubby pick up the mail when all the Remistart precaution/reminder thingies started coming
03-15-2013, 08:10 PM   #1156
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We are terrible at picking up the mail! Thank God I never see the mailman, he must curse at us every time he tries to jam in MORE mail in our already overstuffed box!! so, I haven't seen all this literature you're talking about... hmmm, will make sure hubby picks that up... no worries that he will read it!
03-15-2013, 10:49 PM   #1157
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Thankfully- gi never gave us any of the pamphlets or booklets on remicade- maybe because I asked too many questions-He just briefly went over them .
They did give a minor 3 paged typed thing when Ds had his first infusion but nothing since.
Other than discharge instructions.

So the key is to keep giving the GI copies of research papers then they assume you know all the risks SO...you don't have to be reminded every single time with the big book of papers.

I want so BBQ chips but add doughnuts and chocolate -
I am going to need it
I am taking DS on Monday to get his infusion on Monday and purposely giving him
steroids in the docs words so if he does have a reaction it should be so bad.

The only thing keeping me calm is I have two epi pens strapped to him at all times
-and I have used them before .
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03-16-2013, 04:21 AM   #1158
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Mmm, what are bbq chips? Sounds good, along with the chocolate and wine.
Just to give you guys a laugh - I have managed to pull a muscle in my back - while drying my hair
Have to say my husband has been very sympathetic - after he almost fell over laughing! So unfortunately no wine for me while on the muscle relaxants from the docs or it will be me falling over
03-16-2013, 06:29 AM   #1159
izzi'smom
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Bahaha! Sorry but that's hilarious! Hoping your back is feeling better soon and you can get back to self medicating with wine. BBQ chips are potato chips with BBQ flavor. Potato chips take up entire grocery aisles here...we have all kinds...it's pretty ridiculous!
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
03-16-2013, 06:55 AM   #1160
Mylittlesunshine
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Sascot BBQ chips= are BBQ crisps in UK lol
Couldn't help laugh sorry hope ya back feels better
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Currently on EN
Neacate LCP
Multivitamin
Folicacid
Iron
Dalavit
Calcium sandos
Dyclavlovin
Inhalers x3
Pred tapering
03-16-2013, 08:44 AM   #1161
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Sascot - Sorry but had to laugh! I hope it feels better soon! (You may want to consider a brush cut going forward??? )
03-16-2013, 08:56 AM   #1162
Tesscorm
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MLP - Good luck on Monday!!!!!

I hope ALL goes smoothly. Some chips and box of chocolate Timbits in hand won't hurt anyone!

(In case you don't know, Timbits are the 'holes' of doughnuts! So, little bite size doughnuts!!)
03-16-2013, 10:08 AM   #1163
crohnsinct
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Sascot! How much hair do you have and how thick is it?! See, you should have short thin bunny rabbit hair like me! No hair dryer necessary. Hope you feel better soon. Shall I send some cute medics your way?

Ang: whole aisle...ain't that the truth! And now there is that big contest from one of the manufacturers for a new flavor...I think there are 4 or 5 in the running. They are making them in limited production the one that sells the most wins. Can you believe th obesession...I avoid that aisle like the plague...you know what they say...can't have just one (bag that is!)
03-16-2013, 03:13 PM   #1164
DustyKat
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Oh no Sascot! I hope the injury heals soon!

BUT! As the saying goes...there is always someone worse off...don't know if you have seen this before but it is hilarious, just don't pull a muscle!...

03-16-2013, 03:33 PM   #1165
DustyKat
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Hmmmm...
Attached Images
File Type: jpg 297304_443614975721216_869276984_n.jpg (50.1 KB, 53 views)
03-16-2013, 03:38 PM   #1166
Jmrogers4
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Still looking at his thumb HAHAHAHA!
03-16-2013, 04:44 PM   #1167
Sascot
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Dusty, my poor back hurt with all that laughing! A bit better today - hopefully back to normal wine consumption within a few days
03-16-2013, 04:46 PM   #1168
my little penguin
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too funny ...thumb
03-16-2013, 04:59 PM   #1169
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Have had a bit of an accident prone few days too Sascot!! Burnt my hand and had my hair pulled badly at work, now can't move my neck!!! Ooops, love BBQ chips though!
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File Type: jpg blisters.jpg (27.7 KB, 50 views)
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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
03-16-2013, 05:00 PM   #1170
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Blimey! That was not meant to be THAT big!! xx
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