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09-07-2012, 06:33 PM   #1
QueenGothel
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After the reconnect

Well we went to her doctors appointment and they think she looks great and are not very concerned about the drops of blood she is passing. It is hit or miss. Not always present. But of course today it seems to be more than usual. As of right now she is not on any drugs. She is taking supplements and lot of them.

Tumeric 2 a day
Fish oil / 1000 Omega 3- 2 a day
VSL 1.5 sachets daily mixed in everything cold that touches her lips
Multivitamin
Vitamin c 250 mg
Ferrous sulfate liquid 3/4 teaspoons 3x daily
Biotin 500 (hair loss)
Beano before meals (when I remember, I suck this one is new) lots of gas issues.
Vit D 400


I am wanting to get this bleeding under control, so after lots of research this above is her new cocktail.

I am also trying gluten free again to avoid using Imodium. Her jpouch is not emptying properly and I am thinking the Imodium is not helping.

She starts preschool in 2 weeks. Nerves are making me a wreck.
09-07-2012, 07:24 PM   #2
NMMom
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I know how stressful it is when school is looming ahead! I hope the blood stops soon . Your story has been one of my inspirations so I'm rooting for you!!!!
09-07-2012, 07:34 PM   #3
Farmwife
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I hope the issue with the blood stops soon.
I'm glad every thing else looks good.
Is Rowen looking forward to pre-school?
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09-07-2012, 08:02 PM   #4
my little penguin
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Sending stress free thoughts your way.
preschool is hard without the medical stuff ( for the moms)
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09-07-2012, 08:02 PM   #5
QueenGothel
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Yes she wants it to start now. I am glad I have a couple weeks yet. Not looking forward to it or a gluten free lifestyle. I should know within a week if it is helpful. Thanks for listening.
09-08-2012, 02:58 AM   #6
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Glad to hear she is doing ok, hope the little bits of blood go away! Good luck with her starting school, she will have a ball I'm sure. Also good luck with the gluten free, don't know about where you live but our supermarkets are getting more and more gluten free foods which makes it a bit easier.
09-08-2012, 01:34 PM   #7
crohnsinct
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Wow! The docs say she looks good and aren't concerned?! Woohoo! She is excited about school...woohoo!

I am sorry you are nervous. I could totally understand. It is amazing how unbelievable on you have had to be through all of this and you just keep going...like the energizer bunny. I hope you hit on something to make that stupid blood go away.
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09-08-2012, 05:42 PM   #8
Mehita
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Gluten free isn't so bad once you get used to it and accept it as your new "normal". We're going on 4 years now! Just holler if you have any questions...
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09-09-2012, 02:06 AM   #9
DustyKat
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Thanks for the update Mary.

It is so wonderful hear that the docs are happy with her progress! YAY! After all you have both been through what a godsend. I hope the residual issues settle soon, bless her...

And good luck with the start of preschool! Is she excited to be going?

Dusty. xxx
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09-09-2012, 03:45 AM   #10
izzi'smom
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Izzi sends her love, Rowan!!! Hoping she *loves* pre-school!!
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09-09-2012, 09:27 AM   #11
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Thanks for the update. Keeping our fingers crossed that preschool goes great! Have you gotten to meet her teachers yet and discuss her medical issues with them? I found if you can go in prior to school starting and meet with them it sometimes helps.
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09-09-2012, 06:37 PM   #12
QueenGothel
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She was approve for free state preschool so they actually come to my house to talk with me. I will have the 504 plan printed and ready to go. Dusty she is so excited. I am nervous bc I have been on poop patrol for so long, gotta let her clean herself up is not settling too well. We are working on it.

Thanks everyone! Gluten free isn't sooo bad when you can eat less restricted. She can have corn now so taco night is coming soon. Yay!!!
09-12-2012, 09:58 PM   #13
QueenGothel
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There is a good chance we will be at the hospital clinic tomorrow. Under Rowan's exploratory laparotomyscar (after closure she almost herniated and needed another surgery to correct fascial dehiscence) there is a small lump, it is def a foreign object. Feels sharp. Hoping it is just a suture knot and scar tissue over it. Still am pretty concerned and her bowel movements have been very unpredictable with still a spot of blood now and again. Though they think it is caused by the ileo-anal staple line.

(sigh)
09-15-2012, 07:38 PM   #14
Farmwife
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Hi, I was just wondering how every thing is going?
09-16-2012, 07:52 AM   #15
QueenGothel
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Well they basically said if it doesnt hurt, grow or move not to frett. It is probably a suture. Still seeing blood. I really is bothering me there is not supposed to be any blood. I just want them to find the source ya know. Frustrated completely.

On a good note. I have back off of poop patrol gearing her up for school and she seems to be doing a pretty good job on her own. Still is have 6-10 bm's daily though and I have titrated her completely off the imodium to see if it is a pushing thing.
09-18-2012, 01:12 PM   #16
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After titrating her completely off the imodium her bm's are more liquid by have decreased to 5 a day. I find this odd. She is still happy kid even though we were finally able to catch her up on her immunizations. She got a couple shots today. She is a bit mad at me but the flu and whooping cough are not something I want her to have to deal with this year.
09-18-2012, 02:33 PM   #17
crohnsinct
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Some moms take all the fun out of being a kid It starts with not letting her get whopping cough and the stakes get higher. I bet you aren't going to let her ride in a car sticking halfher body out the window when she gets older either...kill joy!
09-18-2012, 08:41 PM   #18
QueenGothel
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Buzz Kill! lol
09-25-2012, 07:43 PM   #19
QueenGothel
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Nothing has changed... Sigh...

We are all going gluten free to see if it helps. I know I have said this before but I was being sabotaged by DH. I actually boxed up all gluten so he cannot give her any. Still having spotting of blood. Sigh...

Going to bake my first GF bread loaf packed with psyllium tomorrow. Wish me luck, I hope it is not as nasty as the crap in the store.
09-25-2012, 07:45 PM   #20
my little penguin
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Gluten free bread King Arthur has a great recipe for sandwich bread .
Even my Dh ate it.
Yummy just a little crumbly.

http://www.kingarthurflour.com/recip...h-bread-recipe
09-26-2012, 07:23 AM   #21
QueenGothel
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Thanks I bought all the fixins for

http://figjamandlimecordial.com/2009...ee-bread-ever/

I will be trying your next to compare.
09-26-2012, 06:31 PM   #22
QueenGothel
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Talked to the clinic nurse whom talked to Rowan's Dr. They want to do a pouchoscopy early next week to determine if she has pouchitis, cuffitis, or a staple causing the bleeding. They almost wrote me another script for Cipro but I refused without a clear diagnosis since it didn't stop the bleeding before. I am scare to know but want to know at the same time. Biting my nails and stressed out a bit. Didn't really want to give her propofol (sp?) again.
09-26-2012, 06:59 PM   #23
my little penguin
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Glad you are getting the scope . Hope it is an easy fix
09-27-2012, 06:38 AM   #24
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Thanks for the update Mary.

Good luck with the gluten free hun and extra, extra good luck with the scope...

Sending loads and loads of love, luck and healing thoughts your way.

Dusty. xxx
09-27-2012, 07:47 AM   #25
QueenGothel
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Today was her first day of Preschool. I hope she doesn't have to use the loo.
09-27-2012, 07:51 AM   #26
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Hoping right along with you Mary and sending my wishes to Rowan from across the pond!

Lots of love,
Dusty. xxx
10-02-2012, 10:52 AM   #27
QueenGothel
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Flex scope today on the J-pouch. It was a staple not pouchitis. No Ciprofolaxin needed. Glad I refused to give it without the scope. They won't pull the staple, it will eventually stop bleeding on its own. Having them run all her blood work whilst we are here. She is so hungry. Glad there was no sign of inflammation.

My trooper is still kicking butt and taking names.
10-02-2012, 11:11 AM   #28
my little penguin
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Woohoo so glad it was only a staple
10-02-2012, 12:11 PM   #29
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Great news!
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10-02-2012, 01:07 PM   #30
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Thank God only a staple.
Wow I never thought I'd be saying that.
I hope Rowen can get a descent meal soon.
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