# Our Surgery Journey



## Crohn's Mom

I didn't know where to start, or quite where to "post" this, or where my words will lead...so, I just decided to start a new thread :blush:

I will start by saying, I am much calmer.  I had quite the breakdown; but only for a short time.  I am so glad I have one friend that I have known forever who has Crohn's (as do her brother and sister)  This is the kind of friend that you can go years with out talking to and pick up right where you left off.  That's exactly what we did.  I felt the panic coming on as soon as we left the conference room after talking to the surgeon after Gab's 6 hour surgery.  I immediately ran out the door and to my car and called my friend.  As soon as I said hello, she knew.  She knew exactly what to say and how to say it.  She knew exactly what NOT to say as well.  She let me scream, she let me cry, she let me scream some more. She let me.  I needed it.  I am allowed to be angry.  She understands that and knows that just because I am angry doesn't mean that I won't remain positive in every way.  She let me grieve.  And it is, a grieving process.  I truly don't believe that some people understand that, most people.  I think this wonderful group of people here on this forum know all to well, and agree.

_To Dusty...on a personal note...I have been absolutely dreading posting my story because I can not get you and Matt out of my mind.  I thought about you the entire 12 hour wait yesterday (she was in recovery almost 4 hours!).  I know you are one positive trooper, however, I know this is hitting really close to home for you right now and I am sorry for that.  From what you have said so far tho,  Gab's case was closer to Roo's; and Matt is not as severe...so here's looking out !!!  Matt's is going to be smooooth sailing ! After all, he's the lucky NO PREP guy right ! ...Much love ! I think you already understand what i am trying to say here without my scramble brain actually being able to get the words ou_t. :Karl:  


*Ok so details folk*s ! :ylol2:
(forgive me if it's scattered or not the correct lingo...I am still so new to this...and yet so overly qualified at the same time)

Gab's surgery was about 2 hours longer than we expected.  I knew then something was going on.
When the surgeon finally came out and took me into the dreaded conference room, without an inkling of a smile, my heart sunk.
He began by getting a dry erase marker and drawing the digestive system on the board.
He was trying to simulate what he saw when he opened Gabrielle up.
He explained that it was impossible to even try to do it through laparoscopy.  She now has an approx. 9 in incision down the center of her abdomen.  She also came out with, as most of you already know, a (temporary) ileostomy bag.  Also a PJ (?) drain, and a foley catheter.  (and of course lots of pain, as is expected).
So anyhow, the surgeon....He couldn't draw what he saw so he erased it and drew what it was "supposed to look like" in there and tried to simulate all the fistulas that were along with it.  He explained that there were fistulas everywhere.  The "alien baby" (mass) was so big (by the way he put his hands to simulate it I would say about the size of a cantaloupe)  Where before the surgery they were positive there were no abscesses, they found two very large ones hiding in that monster mass.  He said they had been leaking infection into her bloodstream for months.  One bonus...they did save her ovary! Also, she did not end up with the stint in her uretra tube for now.  She does have some kidney damage tho, but they are hoping that now that the monster mass of disease is out that it will begin healing itself.  She will see the urologist again in 4 weeks for tests, and if it is still sick then we begin talking about major kidney surgery he said.  They have confidence it will heal tho.  
In drawing his "picture" for me he explained that he could not even decipher between the different parts as he was cutting them out.  The entire right side of her intestines was one, big, fat jumbled mess of bowel, fat, lymph nodes, abscesses, pus and fistulas.
It is now all gone.

When he came to the room to talk today he said that he didn't tell me yesterday but, ...The extra last hour and a half or so of the surgery was solely dedicated to him making the "perfect stoma".  He said when he goes to reverse it in 6 months, and he said HE WILL, that he has already made absolute sure that (if all goes as planned) he WILL NOT have to reopen her incision to reverse it !! _A tiny light in our tunnel _  I really did think that was very kind of him regardless of how we are feeling right now.

So I think that is the gist of it for now...as I said, sorry if it's scrambled or out of order LOL....so is my mind !!:ybatty::ybatty::ybatty:

I know Gab will get through this. I know she will.  She is amazing for a reason after all!!
She needs her time to grieve her loss for now.  Her loss of her childhood.  That may take a little longer ....She earned it. 

Thanks again everyone !!  I am trying real hard to keep positive thoughts!  I do know this will allow her to heal so much better, and she will ultimately feel wonderful and then probably even grateful :wink:


I forgot to mention....the surgeon said Gab has been suffering for many, many, many years...longer than anyone knew. (except...ME, MOM)


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## DustyKat

Oh T you were just perfect! Not scrambled at all. :hug:

I'm not going to lie T, it is hitting very close to home BUT I knew it would hun and like you I knew when you posted about Gab's being in surgery for 6 hours with more to come that it wasn't going to be an easy outcome, . Please, please, please don't apologise T!!!

Oh man T, poor Gab's having all that s%^* in her for so long! If I am over the moon about one thing it is that she is well rid of it! BUT that's not the only thing I am happy about.....I am happy that Gab's came through it okay, I am happy that she will now start feeling truly well, I am happy that she has an awesome mum, I am happy that she had a great doctor, I am happy that she WILL have a reversal, I am happy that she DIDN'T have a stent and I reckon things will probably settle back to normal just as they did with Sarah. 

I agree T! You have an amazing daughter and you WILL get through this together, Oh the memories you will both have. :lol: BUT now is the time for lots of squishy hugs and holding each other, having a cry together and just pampering and looking after your baby. 

Thanks for your note hun and I understand........:hug:

Take care of yourself mate and that gorgeous girl of yours! 

Much love, :wub:
Dusty. xxxxxxxx


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## Dexky

Hugs for you Mom!!  I fully understand that grieving process.  You felt it when she was first diagnosed as well I'm certain of that.  

You know, soon, you'll be looking back at the beginning of Gabs journey and you're going to breath such a sigh of relief!!  These dark days will be but a memory!!  She's on the right road now Tracy!!  Just a little more time....


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## JetWhite

Hi Crohn's Mom

I don't know you, Gab or your story but my heart goes out to you and I wish you all the best with Gab's recovery and future and thank you for posting :ghug:


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## AZMOM

Tracey - Great explanation.  Lots of love for you both.......a new day, new Gab, she IS going to do great.  And oh yes, you did know......the Moms know (sorry Dex).  

J.


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## JenEdwards

I am so glad that surgery is over for her.  I hope she has a quick recovery.  She sounds like an amazing young woman!


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## CDDad

Wow - thank you for sharing this.  Your love for your daughter is so moving - not to mention that surgery story.  Best of luck to Gab in her recovery.  If she needs some ostomy tips, we're here to help.


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## radchic

I am so glad that the surgery is done. At least now you know.  I always tell Lucas that knowledge is power and how you can't fix something if your not sure what is wrong.  You and Gab are strong women...look what you have already endured,  you will get through this and be even stronger for it.  Sending prayers and strength.


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## Zoodles

I hope she has a speedy recovery and glad that you had somebody who could walk you through the shock.


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## DMS

My thoughts and prayer are with you and your family, I hope your daughter's recovery goes very smoothly, and I think your surgeon sounds wonderful.   Take care of yourself right now too, so that you can be strong when she needs you.


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## tannersmom

Praying for you and your daughter!  Hoping for a fast recovery!


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## AZMOM

Thinking of you all tonight, T.  Let us know how Gab is when you have time........

J.


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## MomofIBD's

Ahhh MOM.....Big Very Gentle Hugs to Gab & You! You do what you have to do to keep some sanity! Your doing as best you can under all these enormous emotions your going through! Baby steps & moment by moment! Let the healing begin! Praying for you All & so hoping that each day dawns a little brighter!


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## Crohn's Mom

Well things here at the ole' hospital are flowing in a positive direction so far....I do mean "flowing" too!
(obviously I am getting my sense of humor back quickly)!

Gab and I have had our share of crying moments ! I am so glad she did tho...and more happy that she doesn't remember most of it thanks to modern medicine ! ( dilaudid pump, epidural, Torradol iv injections, fentanyl pump ( after the dilaudid made her too itchy), ativan, liquid hydrocodone, and a bit of morphine here and there):headbang::headbang: Needless to say...she was in some serious pain! LOL and seriously high for 2 days straight ! hahaha

The epidural is removed now and she's only on the fentanyl pump for pain control, and hydrocodone as needed.  Big improvement in such a short time !

Her face and little body looked like they were going to pop at any minute before the surgery because of the prednisone and the kidney problems.  Now...she is already half the size she was pre-surgery!! My beautiful girl is coming back soo quickly !!:shantel:

The JP drain will be removed tomorrow along with the catheter; and....ready for this....WE'RE GOING HOME ALREADY !! :ylol2:

I'm excited to get home...but oh so nervous at the same time! The new "bag" is just that...New !  it will take a few mistakes I guess till she gets it right....and gets used to it.  I just don't want to screw up something while she's healing and Im helping her...I'll browse the stoma sub forums too i suppose.
She is handling it all remarkably well !  She's already making jokes about the noises it makes when she "passes gas" LOL.  Also, anyone who has come to visit...she just basically puts it in their face ! She says hey...wanna see my incision ?? Then of course they see the stoma as well...She makes the awkwardness of other people's "wonder" go away immediately! 
Again...she's some kind of amazing I tell ya !!

I will update again very soon.  Thank you everyone for your kind words of support and guidance and love !!  It means everything to me !  
Everything's going to be just fine ! :ycool:


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## AndiGirl

Here is a hug for both you and Gabby!  I've been praying for all my friends on the forum.  Gabby is amazing!  She sounds like a trooper.


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## DustyKat

Oh man Tracy, you have :mademyday:!!!


It is so great to hear from you! :banana::banana::banana::banana::banana:


I am so, so happy that you are happy and that Gab's is doing amazingly well! You both deserve the very best outcome and it sure as hell sounds like you are well on the way!........................Well done girls!!!


:award2:


Loads of love, :wub:
Dusty


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## Crohn's Mom

OH Yeah...one other thing !...

I asked her surgeon... how soon 'till she can start her Remicade infusions?

He said...oh, about that...I don't think she needs that now ! 
 What ???
He said that it was obvious that she had been suffering for many years when he opened her up, and that is exactly why none of her medications in the last year helped her any.  He seems to think that she will be completely off of prednisone in less than a month, and only need 6mp !

We're not too sure right now how to feel about this ...
On one hand it's wonderful that the doc's don't think that her Crohn's is as aggressive after all.  Basically, they believe she should have been diagnosed @ 9 when it was suspected then.  It has been growing, with out treatment, for 9 years minimum.  that's the reasoning for only needing 6mp.  They think it will work now to prevent relapse and she will be just fine.
GAb is scared about that, and I don't blame her one bit !

Any thoughts on this ?? I welcome any and all opinions


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## DustyKat

First up I would consult with the Gastroenterologist rather than the surgeon about ongoing treatment. 

Having said that I don't necessarily disagree with what the surgeon is saying and it actually makes sense to me! Hmmmm that's probably not saying much! Nah the reason I say that is because they are my exact thoughts with Matt. I do believe the reason he didn't respond to treatment in the first instance and why we have had the setbacks we have is because of the fistula and abscess. When he went for review with the Gastroeneterologist a couple of weeks ago he told us then that surgery is the only treatment and medication (immunosuppressant) will only be of certain value at this point in time. In view of the fact that Gab's had multiple fistula's and two abscesses then to me medication would have had little effect on her CD.

Matt's projected treatment post op is to move to 100mg of Imuran and have Flagyl for 3 months. 

As you know Sarah was pretty messed up as well pre operatively. For all the good the meds did Gab's you could say they were somewhat similar. Sarah was commenced on 50mg of Imuran nearly 5 years ago and has remained in remission since then T. So if the GI is in agreeance with the surgeon it may well be the way to go. If the GI has different ideas then I would go with what he has to say. 

That's my two cents worth! 

Dusty.


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## Dexky

I agree with Dusty T.  Whether it's pred or surgery that gets them in remission, I would give the "milder" stuff a chance to maintain it first.  But, should the future bloodworks start to run foul, raise hell and high water to make sure they stay on top of it.  EJ's had a good year on 6mp after his pred taper but the bloods have been telling a different tale.  He will soon be moving on to Humira.  

Oh, I missed your first post.  Great news T!!!


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## Crohn's Mom

Update:
Surgeon came in already this morning and said he may have been a little "ambitious" in saying she could go home today.  He said that if she has a really good day today then maybe this weekend.  
Since having the epidural removed yesterday she has been experiencing some "real" pain, so they can't remove the PCA just yet.  They will try and switch her to oral pain meds possibly tomorrow and see how she does.
Unfortunately, she doesn't feel like getting up and trying to walk around yet.  She has a hard time agreeing that it will help her (gas) pain tremendously .. I don't blame her...she has never experienced this and quite frankly....SHE'S TIRED ! :ytongue:

I did get her to move a bit last night when we were alone and she gave off about 4 healthy burps, so she did see a little relief.  She promises that she will give it a good try today tho :rosette2:

@ Dusty...I understand the concept completely about the meds not working while there is so much damage.  It's hard to ease our fears and trust in the 6mp again after trying for a year with no results; even though we are well aware why it didn't work.  I will def wait and see what the GI doc recommends, and that is what Gab and I have already discussed.  I do have a feeling tho that he will want her on some type of infusion.  He is of the belief that we need to attack this in her before it gets a chance to decide if it is coming back.  He said research is showing more and more NOT TO WAIT and see what happens with the (easier) meds, instead go full force and stop it in it's tracks! :eek2:
So,  we shall see what becomes of all this in time I suppose :thumright:

@ Dex...I am sorry to hear that EJ's treatment plan isn't working as well as you expected.  I'm sure you're aware to never count on blood tests, or scans, or whatever tests to "tell all". Gabs had just about every test I can think of done to her prior to surgery, and they still couldn't believe what was in there after opening her up! ... I'm sticking hard to my "mommy" instincts from now until the end ! (Daddy's like you have them too !!) :ybiggrin:


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## AZMOM

Yes, T - the "top down" theory is the up and coming theory for preventing damage.  After all Gab's been through, I don't blame you for wanting to be on the attack.  Dusty and I have been pondering parental uniforms for all of us that would like to battle on our children's behalfs.   

I'm so glad she is one step closer to home.  You all remain in my prayers.

Keep us posted - I know you will!  :hang:

Love, J.


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## DustyKat

Hey T,

I subscribe to the top down approach and if the GI recommends it I would be all for it. I guess where the surgeon may be coming from is I am assuming all the Crohns has been removed so to speak and you are starting with a clean slate. Gab's should now be thrown straight into remission and I think under these circumstances the immunosuppressants can be quite effective. I didn't face this dilemma when Sarah had her surgery because the biologics weren't that readily available. BUT if they had said then she needs to be on a biologic I wouldn't have hesitated, just as I didn't with the Imuran, 'cause I never want go back to that place again T and I reckon you know exactly what I'm talking about!

Hmmm, I'm sorta there with Matt aren't I? But not quite! :lol:

Take care hun, :hug:
Dusty


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## Crohn's Mom

AZMOM said:


> Yes, T - the "top down" theory is the up and coming theory for preventing damage.  After all Gab's been through, I don't blame you for wanting to be on the attack.  Dusty and I have been pondering parental uniforms for all of us that would like to battle on our children's behalfs.
> 
> I'm so glad she is one step closer to home.  You all remain in my prayers.
> 
> Keep us posted - I know you will!  :hang:
> 
> Love, J.



thanks...I had no idea there was a "name" for it! Geez...my daughter was gutted like a fish on Monday..you would think I would at least have a name for what I'm talking about ! :lol2::lol2::lol2: (can you tell I've been locked up in this place too long ??) haha


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## Crohn's Mom

DustyKat said:


> Hmmm, I'm sorta there with Matt aren't I? But not quite! :lol:
> 
> Take care hun, :hug:
> Dusty



Yes Dusty, you ARE there...unfortunately ! :ymad:
However, Matt is going to come out of his surgery a new man! It's almost his turn...and I just know it's going to be a great outcome !! :goodluck:  :ghug:


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## Crohn's Mom

Update:

I think were going home tomorrow !
She has had the catheter removed, the JP drain, and the PCA ! They were scanning her bladder after every output, after the catheter was removed, and she passed so no worries there.
She is now only taking liquid hydrocodone every 4 hours, and dilaudid for break-through pain every 2 hours.  As of right now she is 1 1/2 hours past due for her 4 hour dose...sleeping like a baby without a worry ! 
I even got her to eat a little today...AND walk the halls a few times !  Doctors list is checked off as far as we are concerned.
We are going home with Home Health Care to follow up for a while, so my nervousness about the stoma is eased as well.

Life is good and getting better !  Gab is looking beautiful !! And the sarcasm she is so very good at giving is back in full force !! LOL

p.s.  I guess the surgeon really did do a fabulous job on Gab's incision and also on putting what's left of her colon in place in advance for her reversal....the staff are talking about it !  Everyone is so impressed with his "work"  (he is too ! LOL) 
They also told her today that if she has any type of scar at all from the JP drain they will be surprised because they said her surgeon took extra care with that as well as to not scar her more !


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## DustyKat

Woo Hoo T! Awww there's no place like home, I bet Gab's can't wait to get back into her own bed, bless her.....:hug:

How fab for you to hear all the positive reports about her surgery, such a relief. I am just so happy for you and Gabs...:hug:

Always thinking about you guys, good luck for tomorrow!

Loads of love, :wub:
Dusty


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## Dexky

Awesome update T!!  Thanks


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## AZMOM

YAY Tracey YAY Gab.  That is ALL good stuff!!!

I bet that will be one welcome homecoming!

J.


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## Crohn's Mom

I helped change Gab's bag for the first time today! I'm proud of myself 
It sure is going to take us some practice tho!
I'm really happy to help her; and even more happy that she not only allows my help, but also asks for it :wink:

She still hasn't been released from the hospital.  Her belly was quite distended this morning so the surgeon is keeping an eye on that to be sure.  Also, as the day goes on her fingers and toes and wrists and ankles, etc..are swelling again like before the surgery.  They are weighing her twice a day to watch things.
One of the nurses insisted it's "just the steroids"...Well being the mamma bear I have become...I quickly informed her that Gab has been on prednisone for over a year now and this is NOT how her body responds to them; however, it IS how her body responds to the kidney problems ! She quickly said she will put that in her reports and inform the doctor before he comes again in the morning !

*GO MOMMIES* !!!  ALL OF US !! (and Dex too! ) JUST KEEP ON KEEPING ON !!
Better safe than sorry right !!:mbh:


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## AZMOM

T - WITHOUT a doubt easier to stay another day than to go home and rebound back in there!! Proud of you, bag momma!    Stick to your guns....I know you will.....Mom (& Dex ) knows best!

Love & prayers,

J


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## MomofIBD's

Big Hugs to you MOM !!! The first time is nerve racking as you don't want to cause her any pain or mess up! I'm a nursing assistant & have changed quite a few over the years. They can get tricky as you never know when they are gonna burp! Good for you sticking to your guns girl! You are like her personal nursing assistant. We are the EYES & EARS hands on 24/7 there for them! Some one who pops in & sees them for 5 minutes at a time a couple of times a shift doesn't always see it all! That's because the medical system is more more more with less staff! My pediatrician refuses to go computer for charting for the fact that you can't observe if your face is looking at a computer screen. Observation is part of being a Dr.! I know you want to go home but some more time would be good if that's what needed. My oldest was in a week after his resection & he didn't nearly have what your Gab did. You will be home before you know it!!! 
Go Moms Go & Dex for sure!


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## Dexky

Alright ladies!!  No need to include poor old Dex in everything!!  I know when I'm out estrogened!!  Love you moms and mums(that's for Dusty) Upside down Australian!! 

I think EJ and I are gonna go out and play some ball!!


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## DustyKat

Awww Dex, it's always nice to see a SNAG doing some boy things...............ahahaha................now beat the hell outta ya old man EJ!!!!

Dusty.


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## Crohn's Mom

OH Go Figure !

Gab is feeling awesome ! Up walking, eating, drinking, laughing, etc....We are so ready to go home!  Every other day this week her surgeon has been by before 9 a.m. and tells us we're not leaving yet...

Today?? He's still not here ! (it's almost 1:30 p.m.)

Did i mention we are READY to go home !!
 :ybatty::ybatty:


:rof::rof:

Hurry up and wait....arrgghhh....:eek2:


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## radchic

YIPPEE!!!! Hurry home now and let the real healing begin.  So happy to hear this.  Did they draw labs this morning?  That may be the hold up...hurry up Doc, they want to go HOME.
(sometimes the lab holds things up, waiting on results)


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## AZMOM

Well, T, did he show up?  Are you home?  Is a :mbh: in order?

Love, J.


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## MomofIBD's

YIPPY       :mbh:    INDEED!!!!  2 Steps forward & 1 Step backwards! As long as you keep going forward!!!!

Can't wait to hear how things are going!  :hug:


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## Crohn's Mom

HI everyone ! 
We are finally home (we've been home for a little over a day now)
I think things have hit poor Gab a little harder now that we are home and things are "quiet".  She's getting a bit depressed I think.  Breaks my heart 

I know she'll be fine and it will take a little time.  It just sucks that all I can do is try and be there for her and spoil her rotten.  I want to just take it all away!  I would wear that damn bag, for life, if it meant she didn't have to suffer!

As far as healing goes she is doing quite well. Her incision, as big as it is, is quite beautiful.  It's going to be so thin when it is finished, we can tell already.  She's not eating or drinking much at all so I have to be a nag and keep on her.  The home health nurse said that this is a normal reaction and it is her only source of "control" in her mind right now.  I understand that but I don't want to see her health go backwards because of it.  I have explained to her that she is about to get very skinny and NEEDS to eat due to her new short bowel syndrome.  
@Dusty...just wondering if Sarah went through this at all after her surgery ?  I know she doesn't have a stoma, but her surgery was unexpected and probably just as traumatic.  
Gab has never been one of those girls who worried about her weight or what she ate.  She has never been on a "diet" to loose so much as a pound.  She was always the one forcing food on her friends because she hates to see them not eating so they can be "skinny".

It's a little hard on me too being home with her.  At least at the hospital I had the nurses to help me.  At home I am afraid to even run to the corner store for 10 mins.  I have tried to enlist the help of family, but that is a whole other story....
I know I can do this, I will find a way.

Things are going well considering tho, and I'm sure will just get better and better from here.  Time, time, time right ??:tongue:

I hope everyone's having a fabulous day !! Thanks again for all of the support !


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## JenEdwards

Glad you ladies are home.  I hope the adjustment to everything at home goes smoothly for all of you.


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## AZMOM

T - SO GLAD to hear from you.  All of what you are describing sounds VERY normal to me.  I know I don't have any surgical experience and Dusty will be the wise one but just from the Mom perspective, I think it is normal.

Know that love & prayers are being sent your way and you are doing a GREAT job.

:kiss:

J.


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## DustyKat

Oh T, what a difficult time for you and Gabs......

Sarah took quite a while to pick up after her surgery. She was in very poor condition going in and afterwards she did look anorexic for 2 - 3 months. If I remember correctly getting back to eating took some time as well, I think the body takes such a battering with the surgery that the emotions take quite a time to settle. I worried about Sarah and her body image, the whole female, teenage issue, this didn't end up being a problem. Sarah and Gabs sound very similar personality wise but as you know Sarah didn't have a stoma. The SBS was the hardest to come to grips with and up until last year she planned her eating around her days but that has changed now and she has become very in tune with her body, that and the help of pysillium husks has mean't she can eat out now, she still makes careful choices but it's a far cry from the past.

It will take time to adjust to0 T and I know you know that. It is so overwhelming for both of you and it's such a fine  line between saying too much and nothing at all!!! What does she say when you speak to her about her eating?

It is very early days yet T and yeah time, time, time! 

Lordy, lordy, lordy T I have been stewing over whether Matt is going to have a stoma after what the surgeon told the GP. Matt said to me last night when I was doing his dressing......I will be so glad to get out of hospital with nothing attached to me! I didn't hear that, I didn't hear that! Yikes!

:hang:  T! You are doing so wonderfully well! 

Always thinking of you and Gabs, :wub:
Dusty. xxxxxxxx


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## Crohn's Mom

Dusty honestly, I know next to NOTHING about the SBS.  When I asked the GI doc pre-surgery he said it wasn't going to be an issue.  Well, he didn't know any more than the surgeon just how bad it was in there.  Then the home nurse was trying to explain it yesterday but all I took away from it was how I have to continually watch her weight, watch her weight...etc...

I guess it's time to do more research ! She has already lost over 10 pounds this week. That is mainly from the removal of the mass, and the kidney functioning again so lots of water weight gone.  

Gab has never had weight issues either.  Even when she was rapidly putting on weight with the prednisone, she still just said F it and kept eating whatever she was hungry for ! :lol:  That is why I am so concerned now.  Every time I ask she says she is just not hungry.  So yesterday, I decided to just make her food ( a yummy egg and cheese quesadilla for breakfast), woke her up and handed it to her with a bottle of water and said Good morning beautiful it's time for breakfast ! I don't think she was hungry but she ate it for my sake :hug:  I'll take it !  I tried the same approach for dinner but didn't have as much luck :lol:

Do you all know of any quick reference websites that I could go to for more information on whats to come ? 
I guess it's a good thing that I love to fill my head with medical information! 
I think most of us should have honorary medical degrees by now !:lol:


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## DustyKat

What medication is Gabs on T? Oops! Just read your signature. 

Sarah lost about that amount of weight when she was in hospital and it did take time for her to get her appetite back. She just couldn't stand the look of many foods so had to start off little and slow. 

Do you mean SBS websites? I don't have any particular ones and haven't looked at them for a long time now, sorry. I asked after Sarah's surgery if the remaining bowel would take up any of the role of the removed bowel and they weren't sure. They did feel it would improve over time though. The issues you will have to look to T is malabsorption. Gabs will need B12 injections for the rest of her life, she will need to watch her Folate and Iron as well. It wouldn't hurt for her to have B12, Folate and Iron studies done periodically. Gabs will not absorb fats and salt absorption will also be affected. The GI told Sarah the one thing that most people would die for to hear a doctor say......eat as much fat and salt as you like! :lol:. Sarah's response was......I don't like fat and I don't like salt. Unfortunately these malabsorptions cause other issues with things like uric acid and so lead to an increased risk of Kidney and gall stones over time. 

When the stoma is reversed Gabs will have frequent loose watery stools and it is a result not only of some disruption to the reabsorption of water in the large bowel but more due to the fact that she won't be able to reabsorb bile salts. There is a medication called Questran Lite that for many people is very effective in alleviating this problem. I know it worked for Sarah but she found it quite unpalatable so refused to take it. 

Sarah was unable to manage the SBS very well and I think some of it had to do with her age at the time. I saw no improvement at all in the problem. She settled into planning her eating around the day as her way of dealing it but this is not ideal if you are busy all day and can't eat until late in the evening because then you are up all night to the use the toilet. Untreated Sarah was using her bowels about 5 - 7 times a day. 

The last year of school was particularly hard for Sarah and I know she went off the rails. Now last year she moved away to university in Sydney and the change has  been dramatic to say the least. She has taken control of her life, has a new belief in herself and her abilities and has become so in tune with her body. Has time made a difference to her SBS? I don't know but it has definitely improved quite significantly. She has moved to a vegan diet, primarily organic, because she said it suits her the best, it gives her more energy, she doesn't suffer with bloating and generally just feels so much better. She also found that natural psyllium husks added to her morning coffee allow her to spend the day and classes and still eat things like sushi at lunchtime without her bowels causing her any problems. It takes fine tuning but she has found the right formula for her that gives her a happy balance......not diarrhoea and not constipation! 

Sarah use to be up to the toilet at night quite a bit but that doesn't seem to plague any more. The one thing that does really set her bowels off is any type of oil, whether it is in salad dressing or used in cooking. It will be a lot a trial and error for Gabs but she will settle into a new normal over time and then watch out!!! :lol:

Hope some of that helps T! :hug:
Dr Dusty.......:ylol:


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## Dexky

Glad you and Gabs are home T!!  I'm also glad Dr. Dusty is here to offer her long-learned advice.  I hope Gab soon learns her limitations and the things that work best for her.


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## MomofIBD's

"T".....It is a known fact that when you go through surgery you can feel low & depressed. Especially when it's something so major & life changing. In the hospital there is always someone else there & much going on. Then boom your on your own so to speak. This is the slow process of it all. Some days are good some not so. I remember when my son John had his surgery he went through so many emotions....tuff for a guy. Not ALL ....but us girls can & are softer in this emotion department! (Not tramping on any in particular & we can be strong & ARE....just saying) ; )   

Dusty I believe my son is taking Questran Lite as they removed the eliosecum valve (sp). It helps him a lot. But your right about the taste so he mixes it with orange or fruit punch Gatorade. He gets the big powder can then he can mix stronger for taste if he likes.  
I can't add more other that what "Dr." Dusty has said... She is so good!!!!

Your Gab & You are in my thoughts! Lots of long distant Hugzzzzzzz!


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## radchic

Tracey, 
Glad you're home but sorry it's rough right now.  It is said that there are 5 stages of grief, and I imagine Gab will have to go through them all before she gets to acceptance. Hopefully it gets better soon.  Hugs to you both.


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## DustyKat

Hey T,

How are things going with you? Is Gabs doing okay?

Much love, :wub:
Dusty. xxxxxxxx


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## Runninglady

Hi,
 I hope that Gabrielle and yourself are doing ok today?

She is a very brave little girl. X


----------



## Crohn's Mom

Hi there everyone !

I realized I haven't "updated" in a few days.  It's a little more difficult at home then in the hospital, that is for sure. :shifty-t:

Gab's doing pretty well really.  She of course has her good days, as well as not so good.
Yesterday she looked amazing ! She was happy, and smiley; her friends came to visit too.  I got her to ride to Starbucks with me (she wouldn't get out of the car tho! LOL), and also to get her favorite tuna sub from Subway.
Later last night we went to rent a couple of movies and she did walk in with me. Bonus!

She's having a hard time accepting that the rest of the world is not staring at her, and no one can really see "the bag".  She is more worried about the noises tho.  I can't say that I blame her really. 

Today tho...different story...She woke up looking "pale" and with dark circles under her eyes again.  She says her tummy hurts and she just doesn't feel well.  Her pulse has been running rather high the last few days (between 110-125) after any activity.  The home nurse was a bit concerned about that so if it doesn't resolve I will call the surgeon tomorrow.  She is also quite shaky and, even though our house is like an igloo for her, she continues to sweat.  I personally think it is all food and drink related.  I made her eggs and toast and gave her a vanilla boost for lunch and it seemed to help.  

All in all she is healing quite nicely.  I know the bad days are to be expected with recovery....but, I can't help but to get very nervous with days like today.  My anxiety takes over and I start to question whether or not this surgery was worth it?  Is she in remission? Will she be?  What if it all just comes crashing back that quickly? And on and on.....:ywow::ywow:

I am hoping tomorrow she wakes up with that beautiful smile again and we can take a little walk outside or something :rosette1:  

Time, time, time....and lots of patience and deep breaths !! 

Thanks everyone again for your continued support !! 

P.s> Dusty....I'm still thinking of you and Matt !! :ybiggrin:


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## DustyKat

Hey T!

Thanks for the update hun......:hug:

I hope all turns out just fine for Gabs. Please keep us posted about her pulse rate and pain. This is such a difficult time for you all T and it's no wonder you are having anxiety! I guess the only thing I can say about the second guessing is the one thing you never need to second guess about is the surgery itself, no matter what happens now it is far better than the outcome of severe Crohns continuing to go on untreated.

We are here for you T and boy oh boy are you doing a fab job Mum! You are not alone on your roller coaster ride!

Sending MEGA hugs to you and Gabs and that great big beautiful smile of hers......

:hug::ghug::hug::ghug::hug::ghug::hug: 

Loads a love, :wub:
Dusty. xxxxxxxx


----------



## AZMOM

T - Thinking of you all.  I'm sure you are keeping an eagle eye on Gabs.  I'm with you and home care nurse on calling in if things don't improve.  

Don't second guess!  You have done the right thing for her and she is going to coming through this.  I will tell you from a big surgery I had (with complications) that the shaking and sweating is not exclusive to GI surgery.  I have no doubt that the food plays a role.  If she is still taking pain medication (which I'm thinking she would be yes?), that will make you do that as well. 

Love you all and know that you remain in our prayers.  Please keep us posted as you can!!

J.


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## Crohn's Mom

Just thinking out loud here a bit....

I received a call from Gab's pediatric GI doc yesterday, (well her nurse). I didn't get a chance to answer so I listened to the voice mail later.  She said DR just wanted her to give us a call and see how Gab is doing, and whats been happening lately, etc.  WE haven't been to this doc since mid January when I began taking Gab to the Mayo clinic instead.  This ped GI has been in charge of Gab's Crohn's health since she was 9 years old.  She was the first one to suspect she had it, but would not "label" her just yet.  She treated her then with Asacol and prevacid and Flagyl (if I remember correctly) at 9 for "just in case"  due to her upper GI and colonoscopy showing granulomas throughout her mouth, esophogas, stomach, duedoem (sp?) and illeum.  She stated then that this is typical of Crohn's but not specific enough.  
Anyhow, after almost a year of these treatments Gab became symptom free and all meds were stopped.  Then in Dec of 2008 Gab was hospitalized for severe Mono and viral hepatitis.  She was literally as yellow as these cuties...:kiss: :lol:
At the time I informed the docs that Gab started in July of that year with severe mouth sores, extreme fatigue and muscle aches.  Her GI said well this could be Crohn's rearing its ugly head after all.  She ran a few blood tests and then said..nope...not Crohn's .. lucky her!
that is when our downward spiral began for the next two years.  I took her to specialist after specialist because the "mono" never went away.  All her blood markers kept showing active EBV and CMV both together !  All docs found this very strange that she had BOTH viruses at once that cause MONO.... and were not lessening even 8 months later.  I KNEW It was NOT mono anymore but no one would listen.  Eventually we ended up at a pediatric Oncologist in fear from another doctor that she had leukemia and needed a bone biopsy asap.  Thank goodness this guy was so smart and said NO Leukemia and quickly consulted with the other GI docs at Arnold Palmer Childrens where he was working; then sent us back to her original ped GI.  Within 2 weeks of returning to her original doc she was officially diagnosed with Crohns.  
We completely trusted this doctor, as like I said, she has been treating Gab since she was 9 (and now 17 by this point), and went along with whatever she said.
She started her on low dose prednisone, omneprazole to see how that did.  IT didn't.  then she suggested trying 6mp to begin and then begin tapering off the prednisone.  Meanwhile while we were experimenting with these meds Gab continued to get worse.  She was never able to even lower the dose of prednisone, even after being on 6mp for 6 months, and having the dosage raised several times.
Then in december of 2010 Gab was hospitalized again for 8 days.  That was when they first believed she had a stricture, abscess and partial blockage.  Because of her being close to turning 18, no surgeon wanted to touch her...not even insert a drain for the abscess.  They quickly loaded her with very high dose IV steroids, antibiotics and pain meds.... then released her and said eventually she would have to have 'elective" surgery.  ( in my mind that meant....wait till she's 18!) 
Obviously,I did not wait and got her into the Mayo clinic and .. well we know the outcome of that now.

WEll....my point of this ??  
I have yet to respond to the request of her pediatric GI's phone call to check on her yet.  Even though she is one of the nicest and most caring physicians I have ever met....I can't help but blame her and be angry with her.  I, and Gab too, have discussed this and we are both somewhat angry (to say the least).  We just can't help but wonder if she actually took Gabs case serious enough...or....she just isn't educated enough on Crohn's disease and should have admitted it much, much sooner and let us move on...or even suggested we did.

I guess I am just wondering this.....would any of you even bother to give a "courtesy" call back to the office and fill them in ?  On one hand I want to talk to her and let her know just how bad this disease really is and how horribly it has taken over my girls life.  I want to educate her.  But, I feel like if I do that I am letting her "lack of education" off the hook, just to make her feel better!  And...I don't want to end up being rude on the phone.

Like I said, this dr. is very caring, she really is....but the bottom line is ...she is a pediatric specialist who treats Crohn's disease and NEEDS to understand that she needs more education or she needs to not treat children with this disease.  She should humble herself enough and care enough about the patient to point them in a better direction.

What would you all do ?  Would you call back ?  Or would you just let it go so that you don't take the chance of "going off" on her ?

I'm perplexed .... LOL

Sorry so long and I rambled a bit ! 

I would appreciate any input though as this has been weighing on my mind all day!


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## DustyKat

I would ring her and let her know exactly what happened to my daughter and that this didn't happen overnight.

I know emotions can be difficult to control under these circumstances and if you have trouble controlling them on the phone then I say......so be it. Gabs and yourself have been to hell and personally I don't think your back yet. Let the emotions flow, I know and you know you can't change the outcome now but why shouldn't you speak your mind.

Doctors need to understand that complacency and pride affect peoples lives outside of the surgery. I understand and hear you about the her being nice and caring and I don't want to sound harsh but it didn't get Gabs anywhere. Perhaps if you speak with her and explain to her the time line of events and where you now find yourselves maybe, just maybe she will be more vigilant in the future and not allow this to happen again. I'm sorry, if she is a paediatric GI then lack of education doesn't even come into the equation. There should be no excuse when Crohns has been thrown around in the past. 

As to the admission in December, well they should all be thoroughly ashamed of themselves. I'm a bit of a letter writer when the mood takes me so they would receive one from me! :eek2: 

Okay so Sarah had a different lead up to her diagnosis and I can see where Crohns, well until the last month or so, wouldn't have entered into their thoughts. None the less I did let the doctors know my "thoughts" about the whole thing. I do believe that Matt being diagnosed so quickly was because his sister has Crohns BUT I also believe a big factor in them racing around like blue arsed flies was because I let them know exactly what I thought at the time of Sarah's diagnosis and how their inaction had impacted on her. 

In case after all my rambling you didn't get the message T......ring her and give her an answer to her enquiry......"Hi doctor, just returning your call about how Gabs is doing"......:biggrin:

Much love and many hugs, :wub:
Dusty. xxxxxxxx


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## Dexky

Hey T, you could call after hours and leave a message as well.  That way you could say what exactly you feel w/o emotions taking over.  I'm not as level headed as Dusty so I know if I spoke directly to the doc and things began to get heated (which they probably would in your case), I would lose my ahem rationale and fail to make the points she most needs to hear.  I do agree though with Dusty, the doc needs to hear you.  It may help someone down the road.


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## radchic

Hi T,
I am in kind of the same boat.  I ran out of Pentasa and thought I had refills so called the pharmacy.  I didn't so they called the old doctor and he told the pharmacy that he would have to see Lucas for prescription refill next time.  We have not seen or heard from him since early Jan. when his office was setting up an ultrasound for Lucas...we are still waiting for this appointment.  What I really want to do is call the office and rip their heads off, but have been controlling myself.lol  Like you, I fear i will get too emotional and not get my point across.  Honestly, with my doctor, I don't think it would matter.  He is a bit arrogant and does not like to be questioned or challenged, so why upset myself?  If you think a talk would make a difference how she approaches other patients, by all means call and emotions be damned.  Its tough because you have had a relationship with this doctor and trusted her to do her best for Gab and she didn't.  Good luck with this decision and let us know how it goes.


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## Crohn's Mom

Thanks you guys for your thoughts and opinions!  I figure I have the rest of the weekend to sort out my feelings.  I am considering requesting a copy of her medical records from the surgery, making copies, and then possibly mailing them out to her previous doctor with a personal letter. Then...I can get my point across without "loosing my cool".  LOL

On another note...
the home nurse came out for another visit today.  The sole purpose for having them is ostomy care only ( and they check her vitals once a week...whoopie).  So they pretty much stood there while Gab attempted to change her wafer on her own.  Keep in mind..my Gab is very shy with strangers....she was trying to tell them that she thought it needed to be cut to a smaller size the last time, and again this time.  They proceeded to tell her no it doesn't.  So when she took it off today there was visible irritation and a small amount of blood.  I told them this is and was my biggest fear.  I/we had no idea what to do if this were to happen, and now it has, so what do we do ??  His response...."this bothers me seeing that much redness around the stoma so I want you to call her doctor on Monday and get in to see them"  What ??? thats it ??
Soo...they leave and within an hour the wafer is leaking all over Gabs clothes and she is crying and back to anxiety issues and stating how horrible and disgusting this all is and ...well....just very emotional.  I talked her into taking a shower without anything on it to clean it well ( she didn't want to at all but did it for me)  It looked much better after the shower tho.  
Then...we go to put on a new appliance and realize the size of the hole was way too big!  We told them this...uggghh.  So then we spent the next half hour trying to re cut a new one, and realizing it needs more of an oval shape than round, so there's another challenge.  By the time we figure this out...3 wasted wafers and sticky rings later....we (think) we accomplished it!
I knew there was going to be a lot of trial and error, and mistakes made...but those were supposed to be happening AFTER we no longer had home health care to "teach" us.
I guess I am just venting and so frustrated at the lack of competent nurses we have been assigned.

But, at the same time....We definitely learned a lot today! (unfortunately at the expense of very costly supplies !, and making the stoma site much more sore than it was before)  She hasn't had a pain pill in almost 3 days until after they left her today...now she's had 2 already this evening !
Uggghhh....this roller coaster ride is getting harder!
I know we'll get through it stronger than ever tho!
Just venting I guess LOL.

I know most of the parents on here don't have kids w/ stoma's but hey....if you do someday you know who to turn to for some advice while you're learning !  I should change my screen name to bad-ass-ostomy-momma !! LOL

Have a great evening everyone !! 
Thanks for being here for us ! I appreciate it soo much !  There really is NO ONE else in my life that understands. 

On a positive note tho....one of Gabs best friends was here for our "learning process" and watched the entire thing, and asked appropriate questions, and comforted Gab in such a special way.  She needs that and I am in awe of her friend for being so mature! :thumleft::thumleft:

and @ Dusty....I am so flipping happy that you can NOT compare notes with me on this !! You just don't even know how that makes my heart sing !!


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## Keona

ROFLOL.. 





ostomy-mama ...haha
wow... I just read this entire post.  I have to apologize about skipping over the SBS for selfish reasons... Im just not ready to learn about that yet.
You mentioned T in your post that you think you all should have honorary medical degrees by now...and I wholeheartedly agree with you.
:award2:

You have a very strong young woman T.  I think how she is reacting is absolutely normal and I think anyone would react in the same way.  It really made me smile when you spoke about her back to her sarcastic ways  
Im not really sure what to say.  I don't know what Gab was like before the posts began...what her symptoms were, etc... but I am amazed at how some people can have absolutely no physical pain/symptoms but blood values are out of whack and vice versa... what an insane disease...
I hope you get different health care aides... it would be difficult for an 18 year old to begin with .. but to not be listened to and then have it leak everywhere??  I would be horrified as well!! 
I am glad Gab trusts and loves you enough to do things for you... eating, showering and whatnot.  

Anyhow... I am still trying to orient myself to what is going on with Gab... 
I hope you keep everyone posted with what is going on with Gab and also YOU!!
How are YOU doing?  I know that people who are caretakers to others ..it is exceptionally stressful... I studied it a great deal in school and the importance it is that you do self-care as well.. please, please take time out to do some.. weather it is to treat yourself to go to a spa or what have you... I know it is hard for me to suggest since I am not in the same position but you wont be any good to anyone if you get sick.
Anyhow... I am done my blurb now   I do wish you and Gab better days... 
I am also sending all my positive thoughts your way...
I am so amazed at the resilience and strength of some people...

you both will get through this


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## DustyKat

Vent away T!!! :ymad:

Letter writing is very effective and therapeutic at the same time, so win/win!!! Crack those knuckles and get writing T!!! 

	
	
		
		
	


	






Oh man T that sucks about the nurses, it's just not good enough. They are there to support Gabs not tell her something they know shit about, you both live this 24/7 not them! If they don't have the balls to admit that she is right then they need a kick up the backside......

	
	
		
		
	


	





Can you ring their office and tell them that you aren't getting the support you were lead to believe you would receive??

Don't worry about the pain pills hun, it's not a setback and if they help her get over this crappy episode then more power to the pills! :ybiggrin:

Oh wow, what an incredible friend she has! :ywow: Gabs is an absolute gem T and she is certainly surrounded my many jewels and you are the biggest of them all! 

	
	
		
		
	


	







> and @ Dusty....I am so flipping happy that you can NOT compare notes with me on this !! You just don't even know how that makes my heart sing !!


Thanks mate, I know you are over the moon for us as I would be for you if our roles were reversed. :hug::hug::hug:

Haha, are you lovin' the emoticons! 

Take care my friend, :wub:
Dusty. xxxxxxxx


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## troydanielbecker

About calling or following up with a doctor who sort of failed you in the past, I agree with what others have said.  Did you do anything yet?  I want to add that you sort of have a chance to do what happens far too seldom in the medicine field, which is to bridge gaps and help a doctor learn based on real cases that usually get moved to a specialist or otherwise someone else.  When that happens, general doctors can lose out on learning from their experiences.  So even though the doctor failed you, you have a good chance to explain what happened and maybe help improve the doctor's real-life education for future patients.  Don't get me wrong--I don't mean to belittle your experience or turn everything into "the betterment of future healthcare", but it seems like a good sign to get a call from a doctor seeking follow-up information.  And you have tons of follow-up information that can really help people like me who are in similar situations but so far further back on the path.  And I would appreciate that if at all possible.   Of course it's too bad that it's like that, but it is, and any way we can spread the word and improve IBD awareness, even if it is with our own doctors, I say we do it.

On the other hand, don't let me hijack the thread.  Thanks for sharing and please keep up with the updates.


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## Crohn's Mom

Here we go again....

Gab woke up today and I immediately noticed she just didn't "look" well.  She claims that she feels "ok".  
By this evening tho she is having pain in her stomach, and she is very bloated. Her "prednisone face" that was nearly gone...is much bigger this evening; (she is only on 10 mg. right now and due to drop to 5mg tomorrow...so I know it's not the prednisone)  
Also, she weighed, as she always does first thing and she had put on 5lbs over night.  This concerned me but she says...oh mom its cause I drank too much water and just ate ...
Well, I just had her get on the scale again because she looks "swollen" to me and she has gained 10 lbs today !! today!!  WOW!!  
I put a call into her docs this afternoon about the stoma site possibly being irritated/infected, but the nurse didn't call back before end of day.   I KNOW I need to call the doc asap in the morning...don't worry...Im not trying to have you all diagnose for me   I just want some opinions ??  
She says she is urinating more today than usual, so I am so confused.  My first thought was that her kidney is not healing itself after all; but now....arrgggghh....What else could be causing the bloating and pain ??  Any suggestions ?? Please ??  

@Troy....I appreciate your post; and believe it or not...I completely agree with you.  I haven't responded to her previous doctor yet, but I have decided that i will...and I will do it with grace.  It's not going to do anyone any good now to blow up at her...it's not going to replace my daughters missing parts.  I want to tell her everything that has happened and been done, along with the Drs. opinions and advice at the Mayo clinic now.  Thank you for posting to me  
And if there is anything, anything at all that I can help you with concerning your child's journey through Crohn's, please do not hesitate to ask!!  Bless you and your baby 

Oops...just realized it's UC :sorry: still, my offer stands


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## Dexky

Sorry for the troubles T!  It doesn't make a lot of sense if she's urinating more to be adding the weight.  The bloating I could understand but where's the weight coming from?  Let us know what the docs say!


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## tannersmom

just read this thread.  Praying for your little girl and you.  This reminds me so much of Tanner and me when he had his ileostomy.  Tanner is 11yrs old and was diagnosed with crohn's at the age of 7.  He had his ileostomy for a little over a year to see if resting his colon would help, it didn't so they removed all but 12 inches of his colon and reattached his small intestine to that!!! no more bag and at the moment feels great!  So I understand what you are going thru and how she feels about the bag.


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## Crohn's Mom

Well all, things are going better today :ybiggrin:
Not great yet, but certainly better!

My son, the one who plays tennis (and wins! LOL) played in the Regionals competition today...and WON!(one more game and then he makes it to State !) Yippee !  Why do I bring this up here ? Because I had to take Gab to see her GP pediatrics doc today and afterwards I just drove on over to try and catch a glimpse of his match.  She decided to just wait in the car.  However, as I approached the courts 3 of her bestest friends were there supporting the team and I informed them that Gab was in the car and wasn't coming out.  I knew they weren't going to let that happen.  They ran full speed to the car and next thing I know Gab came out and joined us !  She was welcomed by everyone with big hugs and smiles ! I think it really made her feel great because we stayed for the entire game !!  This was our first real outing outside our home as she has been to scared to go anywhere.  I am oh so happy and grateful that her friends were there to coax her !!  And they treated her like gold, and watched over her like she was so precious!   (and we know she is !!)

I think she eventually figured it out that I sorta, kinda did this on purpose LOL!  I knew they could persuade her ! hehehe

On another note...
I did speak with the Mayo clinic today concerning her swelling and rapid pulse problems.  They are working on talking to her surgeon about the swelling and pain and calling me back tomorrow.  The nurse recommended I take her to her local doc here for the pulse issue so that's what I did.  I am so happy I took her there too!  He is ordering blood tests to check her thyroid levels to be safe, and he also prescribed some anti-anxiety meds as well. (we know she has panic attacks, and anxiety)  The reason I was so happy though, is because we were his only patient at the time and we talked for a good hour. He wanted to know every detail I could possibly give him about her pre-surgery testing, her surgery, how will they treat her now, and the best question of all.....WHAT COULD I (the doctor) LEARN FROM THIS ??  He asked me to "teach" him!! He wanted me to tell him exactly what I, mom, thought he and the other doctors could have done differently that may have saved her from some of this suffering! I about broke into tears right there!
I did what he asked though, and I tell you, once I started talking I couldn't stop.  I was reciting blood test results from 2 years ago leading up to the day of surgery and how I tried to show him, and others, over and over, the patterns and that something was seriously wrong!  I told him all the little symptoms they, and he, failed to listen to when we were reporting them.  Best of all....I told him that he, and all doctors, should really stop and really listen and hear what their patients are saying.  We're not all over reacting, drug and disease seeking paranoid hypochondriacs! And we're not all over reacting mommy's and daddy's that think their child is the only "sick" kid on the planet.  

I said so much more than this, but most importantly....I said it with grace and dignity and with respect to the man who actually asked me.  And he listened. It was a good day!  He truly wanted to know so that he can learn and hopefully know what to look for next time, or with other patients that are "tricky" like Gab.

This man has been my children's pediatrician to all three of my children since the day Gab was born a little over 18 years a go.  Today just insured why I chose him, and continue to keep him looking out for my babies.
Well, that and ... He looked at me and then Gab and said he is and always will be in awe of the two of us.  He said that after the two of us are gone from this life we are going to make someone have two very special angels looking out for them. :Karl: What a compliment to hear.  The doctor, in awe of his patient and mom.  WOW.

Next step....I guess I'll go ahead and speak with her previous pediatric GI doc. (the one I've been angry with).  I feel better now and feel like I should just offer her up my advice, even if she doesn't ask for it LOL

Thanks for listening to me ramble so much everyone! 
I have so much respect for all the stories and people and families here in this forum.


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## Crohn's Mom

> just read this thread. Praying for your little girl and you. This reminds me so much of Tanner and me when he had his ileostomy. Tanner is 11yrs old and was diagnosed with crohn's at the age of 7. He had his ileostomy for a little over a year to see if resting his colon would help, it didn't so they removed all but 12 inches of his colon and reattached his small intestine to that!!! no more bag and at the moment feels great! So I understand what you are going thru and how she feels about the bag.


@tannersmom:

I asked Gabs pediatrician today about the irritation around the stoma site. (he told me he has a lot of experience with ileostomies) I told him that it's been quite red, with a small amount of bleeding, and a bit painful.
He said we can use Miralax powder and take just the powder and rub it on the irritated area and that will, or should, take care of the problem.

Have you ever heard of this "trick" when dealing with your son's ??
Our pediatrician has always had lots of "home remedies" and prefers them over prescribing anti-biotics any day, so this advice didn't surprise me coming from him.  However, I have searched and searched before today and haven't found one person that says to do this.

Do you have any thoughts ??

I am glad your son was able to get rid of his ileostomy and is feeling great right now!!


----------



## DustyKat

Sorry I haven't popped by sooner T! :sorry:

Firstly......Congrats to your boy! That is so fab to hear!......:banana::banana::banana:

Secondly......I am so relieved to hear that they are going to jump on the pulse and swelling issues, let us know how you go with that. 

Thirdly......VALIDATION!!! My favourite thing in the whole world! How good is that T! I am so happy that you have had this opportunity to tell your story and to be listened too and such a heartfelt compliment to top it all off, you both deserve nothing less. Kudos to you guys! :hug:

Fourthly......Snaps to Gabs friends! :lol:  and way to go Mum! It's brilliant that all went according to plan......:wink: and that Gabs enjoyed herself, nothing better than seeing your kids happy! 

Thinking of you, take care hun, :wub:
Dusty. xxxxxxxx


----------



## Dexky

Wow T, if a doc had asked me to do that, after I picked my jaw off the floor, I would have proceeded to um and uh for ten minutes and accomplish nothing w/o being prepared.  I'll have to add you to the level headed list and say I'm not :worthy:


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## tannersmom

crohnsmom, I have not heard of rubbing miralax powder on the area.  Tanner had alot of issues with his bag, pretty much he had a month of doing ok with it and then the rest of the time his skin stayed VERY red and irritated.  At the end we discovered that he was just very allergic to the bags, and I always ordered the hypo/sensitive skin bags. I hope your daughter doesn't have skin issues, Tanner had some skin issues before his ileostomy and after getting it those issues seemed to get worse.  What really helped Tanner was when the bag was off, his skin rested, but of course it could never stay off as long as it needed too.  I hope this issue improves for you guys, it can really wear you down.


----------



## MomofIBD's

T..... Congrats to your son!!! I am cheering him on! Go go go!
I am so glad you have such a wonderful Peds Dr. I have had mine since my oldest (23) was born! (I even had him as a teen for a short bit!)  Anyway I think our Dr's are NEVER too old or young to learn! Just because a case is in a textbook...doesn't mean it's a "TEXTBOOK" case! Look at all the new medical shows like "Mystery Diagnosis" .....I am just glad your Dr. is Human enough to realize he can do better! As for the "Miralax" on the ostomy site....try it if he has had others use it & has had some success. It just might be the one thing that helps! 
If you try it let us know how it goes!


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## Crohn's Mom

MomofIBD's said:


> T..... Congrats to your son!!! I am cheering him on! Go go go!
> I am so glad you have such a wonderful Peds Dr. I have had mine since my oldest (23) was born! (I even had him as a teen for a short bit!)  Anyway I think our Dr's are NEVER too old or young to learn! Just because a case is in a textbook...doesn't mean it's a "TEXTBOOK" case! Look at all the new medical shows like "Mystery Diagnosis" .....I am just glad your Dr. is Human enough to realize he can do better! As for the "Miralax" on the ostomy site....try it if he has had others use it & has had some success. It just might be the one thing that helps!
> If you try it let us know how it goes!


Thanks Mom!
He lost his last round of regionals...but hey the team did great and it was his first year on a team. I'm still so proud ! :thumright:

Funny you mention that show "Mystery Diagnosis"! We have heard that term way too many times to count; as well as, you need a "Dr. House".  Geez! If only he were real! LOL

I see in your signature about Flagyl and hand neuropathy ... My daughter had that as well, it affected her entire right arm and drove her crazy!  The docs ordered  her Flagyl in the hospital after the surgery and I told them about this.  They said it really only happens with "long term use" and that they weren't going to continue it after we left so she would be fine.  I was nervous of course, but, they were absolutely correct! 

*To update on Gab:*
We're still having some problems with her recovery.  It's 3:30 a.m. here right now and I can't sleep because of worry of course :shifty-t: 
Her abdomen is so swollen and painful again. 
 Her skin has been driving her insane with itching; even after taking Claritin daily and benadryl for extra help.  There are no visible rashes or anything to help me figure it out though.
No fevers...thank gawd !
She continues to gain between 5-10 pounds by the end of each day.  Somehow she manages to lessen the pounds and the swelling while she (barely) sleeps and then as the day goes on she is swelling right back up.:confused2::confused2: so strange ?!?
And, to top it off....her arthritis is flaring again! Her right hand and wrist are in pain and swollen (with a bit of a visible lump?)...also her knees are starting.
Her back pain that she had pre-surgery hasn't eased one bit.  I was sooo hoping that this would all be gone, poof, like magic directly after surgery.(or at least by now)  arrgghh!
I am so worried that she is not only NOT in remission yet, but that her right kidney decided not to "heal itself" like they were hoping.  She is scheduled for a nuclear dye scan of the kidney on Friday, along with numerous labs.  I hope she can hold out that long because she thinks she may be getting yet another UTI 

Oh lowdy, lowdy....does it ever end ??  Where's all this energy and health they promised my baby after they gutted her ??  
I have definitely decided that no matter what we will fight for Remicade or Cimzia a.s.a.p.  This nasty disease obviously wants a big fight and we are going to give it the best one we've got !!

I sure hope everyone else is doing well!  I haven't had much of a chance to pop into the other threads lately as she is pretty much a literal 24/7 job lately. :sorry:  I promise to come around and give back some support when things are calmer !!

Be well and hey....smile at a stranger today and make them wonder what your up to! :ylol::ylol:

Oh I just HAD to do a little "edit" and add something positive! :ybiggrin: Gab actually put on a pair of her jeans today instead of the "yoga" pants she's been wearing since months before the surgery!!  She didn't get to wear them too long due to swelling...but hey..she gave it a try! (Her new supplies I ordered came today...I got her some mini bags specifically so she may feel more comfortable with the look of her clothing!) :biggrin:


----------



## Dexky

Hope you got some sleep T!!  Is Gab's GI satisfied that her recovery is going OK?  It just seems like things should be settling by now.  Fortunately, I don't have any first hand knowledge.  I'm just concerned for you both and I hope things start normalizing for her soon!!


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## Crohn's Mom

Thanks Mark! 
We are not scheduled to see her GI doc for follow up until the 25th; the same day we get the results from the Urologist appointment.
However, we have the follow up appt. with her surgeon on Wednesday afternoon.  I am going to request when we are there that he approves her labs, that are scheduled for Friday, to be done while we are there.
That is the wonderful thing about the Mayo clinic....everything you need, and every dif kind of doctor you need are all right there.  It just requires a lot of elevator rides and a bit of walking between buildings now and then! 

another edit: obviously...nope, no sleeping tonight! :thumbdown:


----------



## Dexky

Do the docs not seem concerned about her progress or lack of?  I wouldn't know, maybe everything she's going through is exactly as they expect but I'd want to hear it from them.  Are you having e-mail or phone convos with them?


----------



## DustyKat

Hey T,

Your boy has done so well! YAY! Good on him......

Oh man, I am sorry to hear that Gabs is struggling, this is so bloody unfair! Just tossing some ideas around so bear with me! :lol:

How much output is Gabs having through her ileostomy?

Could she be dehydrated?? This is a risk with an ileostomy. The reason I ask this is dehydration causes bloating and dry itchy skin and the decreased urine output will irritate the bladder and increase the risk of a UTI.

It's good to know you have follow up this week. How often is she having blood drawn? 

Maybe keep a food diary and see if any foods or fluids she is consuming are causing increased bloat or gas. 

Hells bells mate, I hope things start to settle as of now! Hopefully the docs appointments over the next week can sort the problems out and Gabs can start having a taste of wellness and normality......

:goodluck::goodluck::goodluck:

Thinking of you and sending mega loads of healing (((HUGS))) and (((THOUGHTS))) your way, :hug::ghug::hug:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Thanks Dusty...I'll bear with ya anytime...you know I need your advice and opinions! :rof:
And hell, if you sing....I could use a lullaby too cause I've yet to go to sleep...running on 3 hours in the last two days.  My "mom" alarms must be on full alert ! :ylol2:

You could be spot on with the dehydration...and of course I keep that at the front of my mind because of the ileostomy at all times.
As far as I am concerned, she is drinking more than enough, and her output depends on the time of day really...but, seems relatively her "normal" thus far.
Her urine out put isn't so great, but she is still "going" and that's a good sign I know.
She knows her personal symptoms of an oncoming UTI and she believes it's there. I will be calling doc's in the morning for lab orders; we're not waiting till wednesday or friday.
I just woke her to give her daily meds and took her temp and it's at 98.8 F...it's been running at around 97 F post surgery, so I will take it again in an hour or so just to make sure it doesn't continue to rise.

Back to that dehydration (scramble sleep  brain kicking in :lol  When you were a kid did you ever drink a bunch of water, or whatever, just to see if you could hear it "wiggling around" in there ? I know...I sound silly but I wanted to use this as the only way I know how to reference her tummy last night! LOL  That tells me she's probably drank plenty of water; however, I never really understood what made our little tummies swim like that ! :rof:

As far as the "food diary" we both have one of those stored up in our brains now...and starting up a new one especially for her new attachment.  We have found out for sure, with out a doubt, DAIRY IS OUT FOR EVER! :voodoo: Not a good mix with her body, or our nostrils ! LMAO

I better stop here...I'm outta control with the :rof::lol::rof::lol:
I guess I really do stay pretty damn positive even when I'm greatly worried hehe.

thanks for the :hug::hug: and back at ya !:ghug:


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## DustyKat

I do sing, you just may not want to hear it if you're looking to get some sleep! :ybiggrin:

Getting the bloods done earlier is a great idea, this early on post op could mean there are electrolyte imbalances. Keep an eye on sodium and potassium. 

Good luck mate and roll on appointment time! 

Much love, :Karl:
Dusty. xxxxxxxx


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## Crohn's Mom

Dusty you're so smart..and level headed ! :rosette2:

I just did a quick google check on potassium and sodium levels and poof! Both of those could just about cover every one of her symptoms right now!
As soon as you said potassium, bells went of in my brain! She had low potassium post op and she was taking supplement the entire hospital stay.  And..these symptoms are exactly what extended our stay there as well.  I believe I just read that it's the low potassium that could possibly be causing her rapid heart beat as well?

So just to pick your brain a bit....
In your opinion, would this be from her kidney function, or possible malabsorption, or both? 
Mostly what I quickly read, that may pertain to her, was about kidney function.

Thanks again!:rosette1:
I got a 2 hour nap....heaven!


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## DustyKat

I would be more inclined to think it is directly related to her ileostomy and the accompanying issues with malabsorption and water loss. It is early days yet and it is going take her body a while to adjust to the changes. Low pottasium can cause a rapid heart beat. 

I don't think it is her renal function causing the problem but I can't say for sure so don't quote me! It's just my two cents worth....... Even if Gabs right kidney has problems she has still has a normal functioning left kidney that should negate the effects of the other as far as the body/blood is concerned. Most imbalances and issues relating to the kidneys from crohns are due to malabsorption so they arise from the Crohns not the kidney itself. 

I would be having bloods drawn weekly post op until Gabs problems resolve. 

HTH, :hug:
Dusty. xxx


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## Keona

getting potassium through IV hurts like a son of a bitch.. so hopefully she can eat as many bananas as possible.... or take potassium pills...(are there any??)... 

...makes me shudder....


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## DustyKat

Stop shuddering Wendy!......You can take tablets, but they are enteric coated, you can also get effervescent tablets.

Dusty. :sun:


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## Keona

Phew...lol..okay good  
I'd go with the effervescent tablets... makes it all the more interesting..


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## MomofIBD's

Hey T.....Oh my are you having a time! As usual Dusty is da bomb! LOL! All kidding aside she is making a lot of sense. As a nurses aid....we have seen a lot of diarrhea cause very little urine output. The elderly, young, & those that are sick to begin with are ALWAYS more susceptible to dehydration! Electrolytes are a very fine balance to keep!   I am surprised that they sent her home without some potassium to supplement! As someone who takes a diuretic for my BP in the beginning they watched my potassium closely & told me to eat food rich in the nutrient! Well duhhhh it's a whole other ball game for Gab's she has many factors to consider! 1. absorption, 2. recent surgery & the nature of her surgery, & 3. an Ileostomy! 
That's what we are here for to help each other through the really hard times! We understand that you will be there when things ease up & you can have your Beauty rest again! You need to be there for Gab's now & that's what matter's! 

As for Daniels hand Neuropathy it is much better but he still has some slight hand tremor. The Dr. does want to try Flagyl again. He likes to cycle the meds so they don't get immune to one med. It's something we haven't been able to do with all the problems he has had with his meds. It works better to treat with Flagyl for C-diff than Vanco.....also much cheaper. I saw the price for 25 pill's :awe: over $900!!!!!!!! I am glad the insurance covered this. 

:ghug:  We are here for you Proud Momma T!


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## AZMOM

Okay T I'm caught up.  And whew!  You all have been through it.  Dusty is of course, on it like Donkey Kong.   

I'm with you on fighting for the biologic.  I also believe that might kick her arthropathy in the tail.  

Please keep us posted and know that even though I've been "absent" - you all have been on my mind!

Love & :kissgrits: Crohn's Disease!  :ybiggrin: :ybiggrin: :ybiggrin:

J.


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## Dexky

Tracy, did you guys find anything out yet?  How's Gabs?


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## Crohn's Mom

Hey Dex...

We went out and got a home kit for UTI testing and she definitely has one...it changed colors as she was going on the stick and it's supposed to take 2 minutes!  She was positive for Leukocytes according to how it reads.  So Mayo Clinic ordered labs for in the morning when we get there.
They also moved her Ostomy Clinic appt. to tomorrow as well so we can get things checked out.  I changed her wafer again a bit a go and it does look much better tonight...not healed yet, but just a little bleeding and less red; that makes me feel a little better at least about the stoma part.
Just need to get that relief about her kidney now :ymad:

She's still itching like crazy, and her tummy is super bloated along with her face again. (she only has 1 week left of 5mg every other day for prednisone..so it's not that).

 Today hasn't been so great; she woke up saying "I just don't feel right mom".  Also, her legs are really weak today which is new, and strange.  Still no real sign of fevers tho! She is also very fatigued today, but I know "down" days with post-op is to be expected (and she actually cleaned her room yesterday, so that could have done it too ! LOL)

Thanks for checking in hun.  Hope EJ is doing well, haven't seen much lately about him.


----------



## AZMOM

T - I don't know what to say other than you are so like me, the lionness is out.  And she'll stay out until your baby can find a "new normal".  Keep us posted.  

I wish I had other words of wisdom......but I'm too fried tonight.  Ha ha.

Lots of love and all that other squishy southern stuff,

J.


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## DustyKat

Hey T,

Bloody hell, it doesn't rain but pours! 

It's good to hear they are taking notice and moving things along, as the should be! I'm glad the ostomy area is settling......phew. 

Please give Gabs a big (((HUG))) from me. I am always thinking about you guys......:hug:

Good luck with the appointments hun and let us know how things go when you get the chance.

Much love, :wub:
Dusty. xxxxxxxx


----------



## Keona

good luck with the appointment tomorrow


----------



## mizgarnet

T- Make sure they check her protein levels... She is sounding a bit like me before I got better.  Hugs to you both!

Oh... Yep, the area around my stoma stayed irritated off and on for about a month.  It will probably get better after the pred. leaves her system.  

Wendy


----------



## Crohn's Mom

> T- Make sure they check her protein levels... She is sounding a bit like me before I got better. Hugs to you both!


@Wendy...Call me dumb...does that mean blood protein or urine spilled into protein? Thanks 

Well we made it home safe and sound from Gab's appt. today; even out ran a storm
I sure wish we could all say the same for outrunning the Crohn's storm....:hug:

While the surgeon said Gab "looks" so much better, and she does, he just didn't seem so confident with his attitude (for lack of a better word) today.  You know what I mean...when the doc just tries to say things so convincingly, yet at the same time he says things like probably, hopefully, and it (shouldn't) be a problem...but I can't guarantee it. 
First off...her incision is healing as expected, and looking really nice.
Secondly,..we are doing just fine with the stoma, it has just thrown us some learning curves, it's healing up better, and the stoma nurse assured us we're "normal" HA! what does she know :rof:

and then...
we started discussing the ileostomy take down.  Post-op he said 6 months.  We knew this.  But he also told Gab a couple days later when she was crying over it that he would try really hard to do it before she left for college.  He didn't promise that day.. but I wish he never would have even mentioned it.  Today was a different story, and there's no way that will happen.  He said as her doctor he would be rushing it and he is not willing to risk her health(I completely respect that); nor risk, as he told her, that she ends up with another, even more major surgery and comes out with 2 stomas instead (which would be likely) HOLY CRAP! 
Anyhow, he is willing to (probably) try it at the 6 month mark (Sept.) but that is about 6 weeks into her freshman year of college.  He said she will need at least 1 week in the hospital after and probably 3-4 wk. recovery at home.  I didn't realize it would be another major surgery like that. He did tell her that he will do it the first break after her finals (December).  He checked his schedule, brought in his scheduling nurse, and made sure she heard him tell Gab that when she calls and lets him know when her break is, she is his #1 patient and they will move other peoples surgery's to fit her in on her time.  He's such a _human_ surgeon, and oh so very kind and good at what he does, but man I didn't want to see those tears flowing from my baby's eyes.   She went from being super positive to tears in about 2.5 seconds. 

We also discussed her UTI and her kidney issues.  I asked why do we have to wait for an anti-biotic until the culture grows?  Why can't we start her on something now when we know she has one? He explained that it is critical to know as best we can with Gab exactly which meds are needed because of her known ureter and kidney problems already.  He also said, even tho he's not the urologist, that they will probably have to put the double J stent in her ureter after all.  We won't know for sure of course until after we get the kidney scan results on Monday.
Hopefully we will have some kind of info on the infection in the morning tho, because tonight she has started a fever on top of it all.  ( I knew it was coming).
Oh yeah...I also asked about her other random symptoms, and he basically said they can all be attributed to her kidney issues.  I* really* hate being right :yrolleyes:

So all in all the day "is what it is" and Gab's emotions are set back to square one.  I know she'll bounce back...it's just hard seeing her this way again.  It doesn't help that I haven't been sleeping a wink this week, so I am over tired and probably a bit too emotional.  I am also having a problem with my chronically angry appendix today, so the pain and fever from that doesn't help my emotions any.  

Bless you all for being here through my ups and downs with me!  I really don't know how I'd get through this without all of my new friends :rosette1:

Hopefully, when things are bright and sunny and oh so healthy here in this thread for good, our posts here will help a new mom or dad, scared out of their mind because, their baby is going for the dreaded surgery...they will get to the end and realize it WILL all be ok, and there IS hope   I hope all my ramblings will anyhow :ytongue:


----------



## Crohn's Mom

This is what keeps me going no matter what:

Gab entered our picture in a contest on Facebook for a "Brag about your mom contest" to win a $500 gift card. 
It required a caption to be written underneath; this is what she wrote...


> My mom has sacrificed everything to make my life the best she possibly can. I was diagnosed with severe Crohn’s disease, and have been in and out of doctors’ offices and hospitals for the past several years. My mom has never given up trying to get me healthy; she chose a clinic an hour away just because they are the best of the best. She always keeps a smile on her face even when she feels like breaking down. She takes months off of work giving up the money that our family needs. 3 weeks ago I had major surgery and while I was in the hospital she would go out of her way to keep me laughing through the pain and no matter how much bad news we got. She slept on a small, uncomfortable recliner for a week straight just to stay by my side; she is my guardian angel. You will never catch her complaining even though we have been through more than most people will know in a lifetime. She is the strongest, most beautiful person I know, inside and out, and never gets recognition she so deserves.


Yes, I will share my tissues with you all!  She is the most special daughter, and person, I have every had the privilege to know.  I am grateful and proud to call her my daughter.:ghug:


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## DustyKat

Bugger, bugger, bugger......Ugh! I know exactly what you mean mate......:shifty-t::shifty-t::shifty-t:......this sort of sums it up. All is going well and we are really happy with your progress BUT......

I'm so sorry hun for everything you are both going through, the let downs and the set backs. I'm also sorry that you didn't realise that a reversal was the same, as far as recovery is concerned, as the original surgery, I would have said something sooner had I realised, . I have been wondering about Gabs and university and how it would all fit in, it was certainly something that was very much on my mind with Matt. 

Yeah, docs are usually pretty reluctant to start antibiotics, unless it is an emergency, before cultures are back and they know exactly what antibiotic the infection is sensitive to. I so hope the scan results offer up some good news to you guys 'cause to say you are well overdue would be an understatement! 

You have a truly amazing and inspirational daughter T and she will bounce back better and more determined than ever. Not only that, but what a caring, loving and compassionate young lady she is, what she has written about you speaks volumes, not only about herself, but about you too Mum, it is all true and obviously spoken from the heart. I'm so proud of her too! :rosette2::rosette2::rosette2:

I know it is hard and a very, very difficult time in your life but please look after yourself T, I know, rich coming from me......:lol:, you know what I mean though. 

Always thinking about you and always here for you......:hug::hug::hug:

Much love, :Karl:
Dusty. xxxxxxxx


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## Dexky

T, I know it isn't required, but isn't it nice to know that Gabs does realize the extent of your love for her.  

I'm glad you were able to get her looked at before next month and they do realize something is going on.  I hope addressing the uti will help solve many of these issues.  Good luck to you both!!!


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## Crohn's Mom

Happy Easter All ! 


Tomorrow we go to see her GI doc for post-op follow up and to see how soon she gets to start the Remicade.  We also see her Urologist and get the results of her kidney scan and see how they are functioning.  
Big Day in my mind! :lol:

Hope everyone has a wonderful Easter !


----------



## Dexky

Hope all goes well T!  Keep us posted!!  Have things settled at all with the bloating and weight roller-coaster?


----------



## Crohn's Mom

Thanks Dex 

No, unfortunately they haven't settled just yet.  Hopefully we will have some solid answers tomorrow ! Fingers crossed !


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## DustyKat

Hippety hop, hippety hop here comes the Easter bunny......

Hope you are having a lovely Easter weekend T. Sending you all the luck in the world with your appointments tomorrow, I will be thinking about you and Gabs......

:goodluck::goodluck::goodluck:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Well after a long day at the clinic we are finally home 

first up was the Urologist:  He said that according to the scan pictures her right kidney looks blocked; however, the urine is passing through her ureter as it should be.  He will do the scan again in about 9 months.  There was no sign of bacteria in her urine culture.  Also, she is doing better with that and taking lots of cranberry pills and it seems to be clearing up on its own.  
I am a bit skeptical to say the least about the scan being "fine".  I will just keep an eagle's eye on her and if anything changes I will just bug him to check further! :ylol:

next stop was the GI:  He is in agreement with me that she needs to start a biologic a.s.a.p. due to the aggressive nature of her disease.  He scheduled the TB test and chest xray right away and we had them done before we left the building.  We will go back on the 13th and let them know which biologic we choose and get it started.  
As far as her bloating, weight roller coaster, fever, etc...he is convinced that it is being caused because of the prednisone taper; her body's having a hell of a time coming off of them. 
As for her intense back pain, he believes she has Ankylosing Spondylitis.  She was tested for the genetic marker (HLA-B27) last year and was positive.  Her rheumatologist at the time didn't think she would actually "have" this disease.  However, her arthritis symptoms have not improved one bit since surgery, and are getting progressively worse.  Gi doc ordered x-rays of her full spine as well today, and we also had those done before we left.  Good thing is that the biologic meds are also used to treat other auto-immune diseases as well ( such as AK, and RA, etc) so hopefully once she starts something it will take care of the arthritis as well.
She is also developing psoriasis (hence the intense itching !). The "rash" has showed up all over her upper back, shoulders, neck and face today.   But again....bring on the biologics !! 
GI also ordered her to have the HPV vaccine, HepB, and Meningitis vaccines today as she is supposed to be starting college and can not have them after starting her new meds.  We had those done as well today.

She's pretty tired this evening but feeling ok I guess.  
Her bloating has also gone down a bit since yesterday and she has lost 8 pounds over night. (she's excited about that LOL)
Hopefully the fever and the rest will get better quickly and her body can adjust without the steroids.

Hope I didn't miss anything here...It was a long day as I said and lots of info to process! 

Hope everyone had a nice Easter ! :ghug:


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## Dexky

I hope whichever you and she choose, she can finally get some relief from all those EI symptoms as well.  Good grief the poor girl needs a break!!


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## Crohn's Mom

thanks Dex! And yes she most certainly deserves a break! 

Hey ...btw...I keep hearing from docs that Gab has an Ileostomy with a mucus fistula ??

Can anyone explain that to me?

I think, if I were to guess, its a "home made" fistula from the damaged duodenum connected along with the colon in to the stoma ?  Am I even close here ?? :ylol:


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## DustyKat

Man oh man T! As you say, at the very least the biologics will also treat other autoimmune diseases. Bring 'em on and give Gabs some much needed relief, her body needs a break! 

I understand your hesitation about the kidney scan results and hopefully the Urologist is right and over time it will settle and return to normal. Fingers and toes crossed! 

My understanding of a mucous fistula is an opening, like another stoma that is made, at the distal end of the colon. In other words you have your proximal stoma, the ileostomy, and then at the other end you have a small, flat, pink opening, like a small wound, that just drains small amounts of mucous out of the non functioning end of the bowel. They can be internal but generally they are opened onto the abdominal surface. Does sound at all familiar?

I hope by the time you have read this you have both been able to get a decent nights sleep. 

Sending loads of love and luck your way, :Karl:
Dusty. xxxxxxxx


----------



## AZMOM

T - what a day!!! I'm with you on "bring on the biologics". Sometimes these kids' immune systems need a butt whoopin. Yes that is wildly inappropriate but seriously..... Sometimes they do. Let me know what route you all are going and please know y'all are in my thoughts and prayers, even when I'm in absentia. 

Love & hugs -


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## Crohn's Mom

Thanks Dusty   I actually got my hands on a copy of the surgeons post-op report and, if I am reading correctly, I believe the "mucous fistula" is actually connected along with the ileostomy ? 
All their medical jargon is hard to understand...but I think that's why the surgeon said if he did the take down too early she could end up with 2 separate stomas...she has 2 connected together already??  Like I said...I may be reading it wrong...but that is what I took from the (5 page) report! :lol:

@J~ Thanks hun!  I know you have a lot on your plate right now as well, and my thoughts are with you and Claire! You are right....these auto-immune diseases need a good swift butt whoopin !! :ycool:
Do you happen to know if RA and AK are very similar ? I am assuming they are...maybe just minus the possible deformities of RA ? Hell I don't know any more....This is all starting to really get to me the last few days.  It just keeps piling up..one on top of the other...

Btw...what's the point of going to an eye doctor if you have the EI symptoms (eye pain)??
Can they actually do anything about it?  Does it actually cause damage to the eyes? Or is it usually just a temporary probably that resolves itself?  
I forgot yesterday that her GI said I should make her an appt. for her eyes because they are bothering her....go figure!  Guess this is just what happens when you have lovely CD from mouth to anus heh! 
They "cut out" the intestinal problem and boom...all the other EI problems decide to rear their ugly head and get jealous of their neglect :lol:


----------



## Crohn's Mom

Oh yeah...I forgot to mention J...I think we (Gab actually) has decided on Cimzia.  She doesn't like the idea of sitting for hours for the Remicade infusion; and she doesn't like the idea of the pen with Humira, she wants to be able to actually see the needle that is going in.  Strange I guess, but that's who she is.  She would rather see it...the anxiety of the "unknown" gets to her.   We're not a 100% sure yet because Cimzia is still so relatively new, but ultimately the decision will be Gabrielle's.
I have been telling her that she needs to take more of an active role in her health, and her body because in the end, she's the only one this is happening to. (well , you know what I mean  )  This is a good start for her though, she is researching before she decides too.


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## Dexky

T, I'm certainly not trying to sell Humira, but she can get get in in syringe form too.  I just hope that whatever you all decide works and soon!!


----------



## DustyKat

Hey T, :bigwave:

The report makes sense hun. They do do it like that sometimes so you certainly are reading correctly. 

Even though the eye problems may be caused by CD I personally don't think it hurts to go an Opthamologist to have it checked out. Sarah suffered with sore eyes pre and post surgery and I had the GP refer her the Opthamologist just to be on the safe side. As it was, he could not see any problem or damage to the eyes and that was reassuring to me. The problem has seemed to resolve itself over time as she no longer complains about it. 

Good on Gabs for getting on board with her health care! Kudos to you both! It was certainly one of my biggest fears when Sarah left home and being so far away to boot. Sarah went off the rails quite a bit in her last year of school and I know she wasn't compliant with her treatment, so to say I was freaking out would be an understatement! :ylol: It's such a relief when you know they will be responsible and not allow things to get out of control. 

Good luck guys and keep us posted!

Much love, :Karl:
Dusty. xxxxxxxx


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## Astra

Just popping in Tracy to wish you and Gabrielle all the luck in the world with whatever biologic she chooses to go for, Cimzia sounds like the business!
You've both had such a rough time, I sincerely hope this biologic will put an end to all Gab's EIMs once and for all!
Good Luck and Lotsa Luv to you both
Joan xxxx


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## Brian'sMom

Crohn's Mom said:


> We're not all over reacting, drug and disease seeking paranoid hypochondriacs! And we're not all over reacting mommy's and daddy's that think their child is the only "sick" kid on the planet.  .


AMEN Tracy!! You go girl!! I'm proud of you


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## Crohn's Mom

Does anyone have any idea of what could or may cause an intermittent, stabbing pain at the top of Gab's incision?   Its right in the center, maybe a little more off to the right.  She says it's completely new and "different" and really hurts when it comes on.
This may sound dumb...but could there be a staple or something in there ? 
Or worse case...her gigantic abscess coming back ? (if that's even possible? I don't know..)

thanks in advance 

p.s....by the "top" I mean basically right about where your stomach is...between the rib cages.


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## MomofIBD's

T. Does it burn at all? Is it right in the incision? I ask because I had a pain like that in my c-section incision that was really bad hurt something awful. It was a nerve thing but went away on it's own but took awhile. It would come & go. But I had it within the first 2 to 3 weeks after surgery. Always when in doubt call your Dr. 
When my son John got his abscess 4 weeks after his bowel resec in his incision he didn't have any pain it just opened up & drained. Sometimes weeks out after surgery you can get phantom pains. Aches & such. I know after having 4 c-sections & a hyster in the same incision I still get uncomfortable shooting pain once in a while. I know it's not the same types of surgery. But your body goes through so much & on top of this she was so so sick going in. Also some more than others can grow scar tissue after surgeries. As to what kinds of pain & symptoms this might cause. I guess it would depend on each individual. 
I don't know if this all helps. Just some personal experience & ideas floating in my head. As I said if it gets too bad call her Dr. In my book no ? is dumb! ?'s lead to discovery, learning, & knowledge!


----------



## MomofIBD's

P.s......:hang:
:hug:


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## AZMOM

Oh T..... Gab needs a break!!!!! I wish I had something to offer besides a big ol e-hug!

Love J


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## Crohn's Mom

Thanks Mom and Julie  :hug:


I'm thinking maybe it's because she is starting to actually move around and be more active lately.  Maybe a pulled muscle? 
Hell, I don't know.  If it were my own pain Id blow it off :lol:  Ive had a hysterectomy and c-section through the same incision and still get random pain too.  She's just had so many issues since the surgery, I can't help but wonder if it's something else.  
Mom..I don't know a thing about abscesses opening up and draining out..Gabs were buried so deep inside they didn't know she had them until they opened her up.  I'm glad you mentioned that though, so if it happens I will not freak out (too much hahaha).


----------



## DustyKat

I am aware that sometimes people suffer intermittent stabbing pains on their incision line and they usually describe it as being in one spot. The pain can occur at any time post op and for some people it can be six months out from surgery. I have heard it explained to them as being related to nerve endings caught within the scar or as being due to nerve regeneration, just as Julz has said and it does go away with time. I don't want Gabs to have pain but I do hope it is something as simple and non complicating as this! 

I know if you are in any doubt you will have it checked out. Good luck hun and keep us posted! 

Sending you both loads of love and hugs...:wub::hug::wub:
Dusty. xxxxxxxx


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## MomofIBD's

T. I didn't/don't want to freak you out. Our oldest John was in college at the time & he had been having problems for 2 years or so when we started looking into what was causing the symptoms of CD. We had been seeing a GI & was waiting for enough time off from college to get all the tests done when he started going to the ER at College. On one of the ER trips they wanted to do exploratory surgery to find out what was wrong. Instead we had him shipped out to Hershey & that is the first time CD was mentioned as a possibility. The day we got the last test results in as neg for everything he called in major pain & we took him back to Hershey. The tests showed 2 abscesses with a possible ruptured appendix. After the surgery they had no idea what was wrong as the appendix was perfectly pink & healthy. But everything around it was a mess. They took out 7 in. of small & 7 in. large intestines. The whole mess. 5 days later only with a biopsy could they tell what he had. About 3 to 4 weeks post op he was taking a shower & this little tiny scab came off & started draining. Off to th ER we went & they deemed it treatable at home & taught my DH to pack it. After a few weeks he was all better. I don't recall if he had oral antibiotics or not. It was a shock but after a day or so it was back to another new normal.


----------



## MomofIBD's

Oops I hit the wrong button but didn't get to finish. 

Anyway sorry so long winded above but that's how it happened. It was hard & I was such a nervous worried nelly. The not knowing what's going, is it something new, is it.....or could it???  Your Mom intena is tuned in & you need to follow it when the warranted heed calls. Remember to really look at her  & take note of any other changes in her. Ask ?'s & when in doubt go ahead & call the Dr. like Dusty said we are hoping it's post surgery healing pains. I too wish she didn't have any more it's not right as she has done way beyond what any child should have to.  Hugs to you & keep us posted on how she is.


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## Crohn's Mom

Ahhh I'm so happy I put a call in to the Mayo to check on Gabs' spinal x-ray results.  It's been a week today and I had still heard nothing.  Doc said her x-rays were "A-OK 100% fine with no signs of Crohns or any other issues" He sounded so happy and sure of himself...And then I said well doc, that's great, then can you please explain to me why it is both of her legs keep tingling when she's walking ? UH OH ! He's not so excited now :ylol: Seriously tho, he said to get her into her local doc a.s.a.p. as he is worried about possible neuropathy and if needed he will get her in to a neurologist up there.  Oh boy! Don't you all wish you had our life ? Oh wait...you do ! Yikes !  

Guess what Crohn's..... WE HATE YOU ... GO AWAY !! :ymad:

On a much more positive note, Gab is actually feeling a lot better with most of her symptoms.  She has a cold coming on and fever the last couple of days, but since we are going to her Pediatric doc anyhow, we'll just have him reinforce that it's just a cold.  She is still having bloating/weight issues, but,....are you ready for this....SHE TOOK HER LAST DOSE OF PREDNISONE LAST NIGHT !!! :lol2::lol2:

Also, while I had the GI doc on the phone today, I asked about the appt. on the 13th we have scheduled.  I told him we are supposed to come there and let them know which biologic we decided on.  I said, well Gab has decided that she is definitely doing Cimzia so how soon after the 13th can we actually start this?  I explained my mommy fears as she is on absolutely nothing for Crohn's medication wise right now.  While we were on the phone he says, hang on...clicked a few buttons, got our pharmacy information, and we are set to pick up the first 2 syringes of Cimzia to bring with us on the 13th ! Im so excited! I'm so nervous! I'm so excited! I'm so nervous....grrrrr you all know that feeling too well 
I am definitely ready to get this ball rolling for her.  I NEED to see some positive responses in her.  She wants to go away to college so badly.

thanks everyone for your continued support.  It means so much to me just knowing I can come here and everyone relates.


----------



## Dexky

Great news on the x-rays T.  Sorry for the continuing symptoms though things are starting to sound a little better anyway!!  Just keep moving in the right direction Gabs, inch by inch!!


----------



## Crohn's Mom

Wow! What a long time we just spent at the doctors office...2 1/2 hours he spent with us! 
I will start by saying part of that time was spent concentrating on my youngest, JJ, he is 13.  I have briefly mentioned before that he may be suspected of having CD, and I was right.  Doc has ordered a long list of blood work; then we will be making an appointment with a Pediatric GI. :ymad:
Gabrielle was something today I tell ya ! If it wasn't for her we probably wouldn't have any tests looking for CD ordered for him today.  Doc was discussing JJ's back pain and saying that it is probably due to his back pack being too heavy and carried wrong.  We had also discussed a "patch" he has had below his knee for nearly 10 months now that will not heal. JJ also had an emergency appendectomy in July last year, and that is will all of his "symptoms" really started.  The same tummy ache he had before surgery, he still has now.  So with all of this information in her head, as the doc is talking about proper back pack carrying, she blurts out...NO, I think he has Crohn's disease ! Doc said excuse me sweetheart? She continued and said it again...I think he has Crohn's disease.  You told me the same thing when I came here  in 6th grade complaining of back pain.  You told me to get a back pack with wheels and I'd be all better.  And look at that patch on his knee...doesn't that happen with Crohn's? And his stomach aches dont go away!  I'm sure she said a few other things as well, while I and the doc, just stood there staring at this young lady who is trying to make damn sure her brother does not get passed over like she did.  I'm tearing up as I write this just thinking about her strength of character.  So, thanks to her, we are on our way to a possible explanation for JJ's problems, sooner than later. 

As far as her own back pain that we went in there for, doc has scheduled her for a CT scan of her spine and is referring her to a Rheumatologist for possible RA, AK or Spondoli.. (something...); one of them anyhow :yfaint:  He also prescribed her some Flexeril and T3 for the pain to get her through until we find out what is wrong.
And, I was right...she simply has a little cold and allergies.  
He seems to think her skin issues now are Eczema and not Psoriasis?  I don't really understand the difference between the two, but that is his opinion on it.  Poor thing its' covering her face now and her shoulders and back and spots on her neck.

So that's that in a nutshell.  Gab is on her way to getting healthy we hope...and JJ is probably joining his big sister in the Crohn's journey.  Humph!

Have a lovely evening all   I may actually try and sleep...for a week would be nice!:lol2::lol2:


edit: I just want to say..you have to know Gab to understand what she did by speaking up today.  This girl is the quiet and shy "I'm fine" person, and never ever complains to a doctor or questions what they have to say in reference to her.  But man o man....did her fierceness come out when it came to her little brother


----------



## AZMOM

Well I am so proud of Gab for being brave and assertive.  And......I hope and pray she is w-r-o-n-g!    Either way, now you'll know for sure and so will she.  God love our kids - they are fearless!

I think you are talking about ankylosing spondylitis.  Keep me posted on what they tell you.  We have some arthritis experience ourselves.    Claire's arthritis is separate from her Crohn's.  

Love you, T, you are a GREAT Mom to those kiddos.  :kiss: 

J.


----------



## Dexky

I'm with Julie!  Hopefully, Gabs is wrong!!  It'd be best to find it early though if it is crohns.  Good to see her stand up and be heard like that though T


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## Crohn's Mom

thank you both Dex and J !

And man o man do I hope she is wrong also!! 

It's so strange with the thoughts of thinking another one of my children could have this horrible disease.  I feel like my brain is on an auto-pilot of denial.  I "see" the symptoms, and yet I still find myself excusing them away.  
Oh just lay off the dairy I tell him.
Do some stretches.
Take a nice long hot shower.
Your staying up to late at night...that's why your so tired all the time.
Did you eat too much junk food today? Is that why your not hungry, again?
You're just a late bloomer, you will grow soon I just know it.

Ayi yi yi it goes on and on.  
Is that me being blind? Or stupid? 
I tell myself I will be so aggressive if either of my other two kids show signs of Crohn's; yet I don't want to over react at the same time.

Part of me wants to run to the local Children's Hospital and demand they keep him until they figure out what's wrong; and the other part of me, just wants to keep thinking he has growing pains and eats too much ice cream :yfaint:

I question whether I have the energy for this. 
I know I will run on auto-pilot for as long as necessary.
I guess, Just when you think your heart can't take one more let down, it finds the room and continues on...


----------



## MomofIBD's

Oh T!!!!  So so many mixed emotions & tears as I have read what went on at the Dr's! 
First off Bravo to Gabs! But as Dex & Julie have said I so hope she is wrong! My heart swells with her conviction....not that we want her to be right but that her intuition through self discovery has brought her to voice her concerns!
I was so HERE with Daniel EVERYTHING you said above (sorry I don't know how to do the box quote thingy)! When my son John was DX with CD in college & then my son Michael (was DX with polyps & IBS....I still wonder some day if that DX will change!) in College both second year students had to have surgery for their so called appendicitis! Both had perfectly pink & healthy ones. Then Daniel as the years went by with all his crazy rashes, fevers with sore throats that were not STREP!  Serum sickness reaction to Cypro that we thought could be systemic onset JRA! The sores in his mouth....as I get more involved in researching CD my mind goes OMG it ALL makes sense now! Then he had all the tummy symptoms after his brothers were DX & I just thought what "YOU" did & that someday he might have this but because last year at this time I didn't know what I know today..... I passed it off like you did! But when he started with the blood in his stool I couldn't let it pass anymore & took him to the Dr. last summer. Even with all that the Peds GI thought it could be just constipation but ONLY because his brothers have a history did he push the issue to get scoped. Always in the back of my mind but the forefront said NO this isn't so....I can't have all my baby's sick! Sighhhhh we have one last son Chris to get the testing done on. The Peds GI Dr. said it should be done so that we can catch it early if he does have it. He doesn't have symptoms other than occasional heart burn. Nothing else. I am waiting till this summer then will push the issue & have him seen. 
Although Daniel is having so many crazy problems with it all. The GI thinks we have caught it early.

 Denial is very powerful! We have to fight it & let the truth come out! To deal with what the truth might hold as hard as that may be!  Believe that there is hope even in the face of this awful disease! Nobody said that being a parent was easy! Oh but how I wish it would never ever have to be so hard!


----------



## Brian'sMom

Julz,
I'm so sorry you have so many members of your family fighting this disease. You are so strong!! I've always wondered if any more of my children will show signs of it. In our extended family, only my husband's sister has UC (diagnosed when she was 23) and then my son, that's it. Well, my husband has IBS symptoms. (Had colonoscopy). Do very many of your extended family have it too? (Sometimes it's a subject that doesn't get talked about).


----------



## DustyKat

Hey T!

So, so, so great to read that Gabs is starting to feel better in many ways and YEE HAW, ding dong the Pred is dead!!! :voodoo:

Good luck with the Cimzia hun, I am hoping, wishing and praying that this brings your baby the peace and relief she so justly deserves. :hug::hug::hug:

AND WOW, what a fab big sister she is! You must be absolutely bursting with pride! Kudos to Gabs...

:award2:



> Ayi yi yi it goes on and on.
> Is that me being blind? Or stupid?
> I tell myself I will be so aggressive if either of my other two kids show signs of Crohn's; yet I don't want to over react at the same time.


Neither, it's you not wanting to think the unthinkable, so pretty normal I'd say T! And bugger the over reacting, as far as I'm concerned you can never over react when it comes to your kids. Having said that, I hope he doesn't have IBD either! 



> I question whether I have the energy for this.
> I know I will run on auto-pilot for as long as necessary.
> I guess, Just when you think your heart can't take one more let down, it finds the room and continues on...


Hey, if Julz can do it, speaking on your behalf Julz...:shifty-t::, and I can do it so can you T! :ybiggrin:. Yikes, hope it doesn't come to that T! 

Thinking of you all, :Karl:
Dusty. xxxxxxxx


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## MomofIBD's

Brains Mom no one on either my husbands side or mine has an IBD's. I know on me DH's side there are food sensitivities & allergies including DH. I really think a lot of them have or had (those that passed on) had IBS. Just never officially DX. My Mom apparently had a lot of stomach pain when she was young. Later in life due to some meds, an injury, she was DX with what they called colitis not the ulcerative kind. She had blockages due to the injury & having severe scaring. She had several surgeries. But from what I remember none of it was ever like CD. Since she passed almost 20 years ago before these health problems started I never had a chance to ask in-depth questions of her. My sister has IBS & I have Gerd. So that's all I know. But something sure happened with our genes when my DH & I had kids. 
Some days I just feel like a bad rerun of the chick with the spinning head in the movie "The Exorcist"! But I gotta keep going plugging on. The bumps in the road open up too wide & swallow me for a bit then I manage to get out of the hole & travel on down the road.  
:ghug::ghug::ghug::ghug::ghug::ghug::ghug:

T.... Dusty can sure speak on my behalf! It really really helps that because we all unfortunately walk this same road together though hitting many different bumps with different size openings & mile markers along the way! A common road we ALL get!!!


----------



## Crohn's Mom

Just stopping by to jump up and down :banana::banana::banana::banana:
and say....just checked out the pharmacy online to see if the Cimzia injections are ready for pick up.  When I checked 2 days a go (pre-insurance approval) it said $8040.00 was the cost !! Today....$35 co-pay !!! ( sorry Dusty...I AM decimal challenged ! hahhah)

*Happiness* !!!!! 

And....Gab is at the mall shopping with her friend today...IN PUBLIC !!  :ylol2:

Ok...off to take care of some errands now and then get Gab the CT scan of her back (cervical, thoracic, and lumbar spine)  Guess the doc's not leaving any (disc) unturned :ylol2::ylol2: I crack myself up ! LOL

Have a wonderful Mother's Day all you momma's out there !! 
You ALL deserve to have a relaxing day with no worries of illness and pain for your children! That is my wish for you ! (and Dex too :kiss 
:Karl:tiara::Karl:


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## DustyKat

Oh man T, I am so happy and excited to be reading all this I am just about peeing myself! 

The best Mothers Day present ever! 

:mademyday:

Dusty. :wub:


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## DustyKat

Love the new avatar T!

Dusty. :Flower:


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## Crohn's Mom

Thank you Dusty ! :ghug:

We got the results of the CT scans yesterday and they were all negative.  So next stop is a Neurologist.  We should hear back from her GI doc at the Mayo Clinic tomorrow for the appointment time, and to see what's next!
I thought maybe by now the "tingling", and pain, would just magically disappear, but no such luck.  She says she feels like a crippled old woman ( I guess the mile walk didn't help matters ! LOL)  

Also, I finally got JJ in for his blood tests this morning.  OH what an ordeal that is!  He is my little drama king to say the least :lol2:  Poor kid, the first lady stuck him and did a terrible job and kept digging and got nothing.  So I (politely) said..ma'am, do we have a problem here ? :devil: She stopped and called someone else in.  Then, they used the smaller needle and he was so upset from the first she couldn't get the blood to flow..and,  he wouldn't calm down.  So then I had to pretend to play tough to get him calm because she was suggesting we come back tomorrow.  NO WAY!  I had already waited over an hour in the waiting room.  so...lil man finally calmed down and I went back and got her when he was ready, except this time, I left the room and let her handle it.  I knew he wouldn't be as "emotional" if I weren't around to play off of...:ylol::ylol:
I do feel bad for him tho.... 5 tubes of blood :awe:
Like I told him tho...they will all come back showing how healthy he is and he won't have to worry about it again until he's 60! :ylol::ylol:  (fingers crossed !! )


----------



## Dexky

I know you want answers T, but glad the CT scan was good!  Hopefully Mayo can get it sorted!  Good luck on JJ's bloods!  Let us know!


----------



## DustyKat

Hey T,

Good to hear that all is negative with the scans but I well know the feeling of getting negative results and then wondering what next! I hope you get an appointment soon, keep us posted!

Awww, poor JJ. Hoping and praying T that the results are returned with no asterick! 

Random and most likely stupid question T......How often is Gabs B12 being checked? 

Loads of love, :wub:
Dusty. xxx


----------



## Crohn's Mom

Thanks guys! 

Funny you ask Dusty (and never a stupid question) I have a lab form for bloods for Gab to check her B12 and other things in hand.  We are going to try and go tomorrow morning.  I will let you know how they turn out.


----------



## margie

Tracy,
Wow, you not only have one very special daughter, but you are definately one very special and very loving mother.  Yup, need those tissues for sure.


----------



## AndiGirl

I totally agree with Margie!  Your daughter is lucky to have such a loving mom.


----------



## Crohn's Mom

Thanks so much Margie and Andi 
So very sweet of you both!


----------



## radchic

Tracy, everything is crossed for your son.   Dusty, good thinking on the b12.  Every lab drawn for Lucas has b12 ans ferritin checked.  His fingers and toes goes tingly and numb when he is due for his shot.


----------



## Crohn's Mom

OH Geez....GAb is feeling so flipping good, and so full of energy today!
so good in fact that she ran out and got her little nose pierced ! :ylol:

This would be one of those moments as a parent when you sit back and wonder...do I say NOOOOOO !!  Or do as I did....try to warn her of the risk of possible infections, smile as she says "OH IM FINE MOM!" and try to breath as she walks out the door to go do as she pleases :ylol::ylol:

I have to admit...she looks damn cute ! And, she has wanted this for years, so I am glad she finally got to do something she wants


----------



## Dexky

Ummm, good? for Gabs!  Eh, I'm glad she felt good enough to get out and do something!


----------



## DustyKat

Ahahaha, I say, go Gabs!!! Meh, a  piercing is a piercing, you can always take it out! 

I am just so flippin' tickled that Gabs is feeling normal enough to race out the door and do it! Yee Haw! 

:mademyday:
Dusty. xxx

:worthy: Cimzia


----------



## Welsh-bird

Way to go Gab.!! Sounds as though thing's are heading in the right direction for you all now....and about time too!
As soon as my chemo's done, I'm outta here for a tattoo Thinking of having 'R.I.P 18.3.11' on my butt..seems appropriate!
Hugs xxx


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## Dexky

Ahahahahaha!!  Andrea that's awesome!!


----------



## DustyKat

Hahaha Welshy, when ya arse sags the RIP will look like a big fault line! 

Dusty.


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## Crohn's Mom

Ha ! I found the answer finally about Gab's stoma..whoo hooo LOL

She has a 


> Double barrel stoma
> 
> When the caecum is removed, the surgeon might create a double barrel stoma. In essence, this is an end ileostomy (small bowel) and a mucous fistula (the remaining colon) sited beside each other. On examination this will look almost identical to a loop ileostomy, however, closer inspection will show two separate stomas.


So, to answer my own questions...yes..she has two separate stomas connected together at the same site. 

Interesting! (to me anyhow)


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## DustyKat

Elementary my dear Watson. Good for you T! 

Great job, as always...:medal1:
Dusty. xxx


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## Crohn's Mom

I didn't want to open a new thread so I'll just add this in here...

Gab has been gone since Saturday.  She stayed at a friends house Sat, and then left Sunday to go over to the University for two days of orientation.  I set her and her friend up in a hotel room on Sunday evening so they wouldn't have to get up at 4 a.m. to drive over.  She has been texting here and there and she's soo happy with everything, and already talking about rushing for a sorority. I finally went back to work yesterday (after taking 3 months off).  I was originally only going to be off a month for her surgery, but with all of her up's and down's it obviously extended out much further.
So I have been trying to keep busy while she is gone.  Trying not to "bug" her by texting or calling or reminding her to take her medications....IT'S HARD! :rof::rof:
This is my first taste of what it's going to be like when she leaves in August.  While I am over joyed that she is going on with her life, and seemingly getting healthy enough to lead a normal college life, I miss her terribly already!!  She has been gone for longer than this before, but for some reason these 3 days are really getting me down.  It's so bittersweet.  I'm not ready for this ! :rof:
I know, I know, I better get ready...I don't have a choice ! LOL
I'm sure other parent's can relate to this though....I HOPE ! 

I can't wait until she gets home this evening and I can lay my eyes on her and make sure she's ok 
Oh man...no wonder she's so ready to go...I am such a smothering momma ! (but soooo loving in my defense !):ylol2::ylol2:


----------



## DustyKat

Oh yeah T I can relate! I don't think I have cut the apron strings yet with Sarah! :ylol:

Oh hun, you have it so much harder than I did with Sarah so I'm not one teensy bit surprised that you are struggling. We know it's inevitable but it sure as hell doesn't make it any easier! 

Gabs will be away having the time of her life, as she should be, and you will be left rocking in the corner plucking at the corner of a handkerchief! Yikes! :lol:

:hang:  Mum! Not only are you normal but you are doing an absolutely fab job! 

Much love buddy, :wub:
Dusty. xxxxxxxx


----------



## Dexky

Actually T, I can't relate but now you've made me think about it and I don't like the idea at all!!  I can well imagine how you feel though!  I'm sure it'll be like every other stepping stone you've crossed.  After a while, you'll look back on your fears and laugh because Gabs will be shining like a star!!


----------



## Brian'sMom

I really missed my daughter when she went off to college!!!! She was ready to go...which I agree is good...means you've raised her right...but she was a bit homesick for awhile. (Didn't want to come home...just talk here and there) Thank God for cell phones! We'd text each other a lot. She's good about texting right back and that helped.  It got easier. And I had to force myself after awhile not to check in on her every night!!(Are you in bed?...its late!) My son graduates in 2 years...I'm hoping time goes slow. My youngest, Brian, has said: "I'm going to be here alone, aren't I." He's 5 years younger! I tell him...you'll be 13 then- have lots of friends over! The bigger kids had to be quiet when he was little and in bed...he won't have that issue


----------



## AndiGirl

I can't say that I understand, as I won't be in your situation for another 15 years.  It will be hard at first, then you'll start getting into the college life with her.  My mom had fun talking to me about classes, boys, activities.  She told me about her college days in the early 1960s.  She went to nursing school in Los Angeles, California.  For a small town Alaskan girl, that must have been a shock at first.  Hugs to you.


----------



## Crohn's Mom

You're all much to sweet to me!
thank you so much for your kind words and especially for not making me feel like a nut case! :rof:



> Gabs will be away having the time of her life, as she should be, and you will be left rocking in the corner plucking at the corner of a handkerchief! Yikes!


EXACTLY !! LMAO !!  Oh dear lord...I'm going to be one of those people reciting the same sentence to myself over and over and over and picking out my eyelashes one by one! 

Brian's Mom..thanks for sharing that.  I will continue to keep employment if for nothing else in this life but to pay for our cell phone bills! :lol:

Andi and DEX...don't blink!! Before you know it, you will unfortunately be in the same shoes  It goes by so incredibly fast ! 

Thank you all again for putting up with my neurosis! 
much love,
~T~


----------



## DustyKat

Awww T, we're all just nuts in a bowl, rocking away together. 

	
	
		
		
	


	





Dusty. xxx


----------



## Crohn's Mom

Feeling a bit nostalgic today 
Gabrielle decided to drive home today and surprise me with a short visit.
It made my entire week suddenly better !
Yes, she slept half of the few hours she was here away....but I loved it.
I love knowing she is in the next room again.  I love knowing she is home.

Gabrielle is now doing so well.
She is off to college and excelling; she is throughly enjoying her life.
She is scheduled for her reversal surgery on December 13th. It will happen !

Her popping in today is what prompted me to visit my old threads on here; I am so glad I did.  Even though I have cried a thousand tears tonight re-reading "our story", it was well worth it.  My how far she has come....amazing!

So, as I sit here dripping teardrops on my computer, rereading the last (almost) year of our life; I want to thank you all.  I am so grateful for the amazing support I have received here, and for the new friends (for life) that I have made.  What an amazing journey !!

I can not wait to update in December and let you all know how amazing her surgery was !  :Karl::Karl::Karl: to you all ! Thanks, with all my heart


----------



## DustyKat

Oh hell T, now I'm blubbering! :lol: How loving and thoughtful that she suprised you with a visit...you should see the smile on my face! :ybiggrin:

I am *so* happy that Gabs is doing so well,  She has come so far T and I don't doubt for one minute that re-reading this thread would have been one helluva an emotional ride...:hug:...I remember it all so well. You must be one proud mama and rightly so. 

I think about Gabs often T and wish her all the love and luck in the world for her surgery in December. I will be living it as if it were one of my own. :heart: 

Loads of love mate, :Karl:
Dusty. xxxxxxxx


----------



## Dexky

That's great T!  Will she be home for T-giving and Christmas?  Sounds like she's doing great


----------



## AZMOM

Awwwwwwwww T. 

BIG HUG-

J.


----------



## Crohn's Mom

Yes Dex...She gets a few days off at Thanksgiving, and about 5 weeks for Winter Break!


----------



## izzi'smom

I am so super happy for you! I also appreciate you sharing...thanks for giving us hope for our kiddos  ((HUGS))!!


----------



## Tesscorm

What an incredible story!  Heartbreaking and inspirational!  She sounds like such a wonderful girl - how can you not be so very proud of a young lady like she! :medal1:

Wishing all the very best for her upcoming surgery and a very, very speedy recovery! :dance:


----------



## DustyKat

How is Gabs going hun? I imagine she is home for Thanksgiving? 

Love ya mate! :hug:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Thanks Dusty 
Yes, she is home for Thanksgiving break and I  am enjoying every second of it!  I get 4 whole days with her:heart:

She has a lot of homework in preparation for final exams, and final papers.  I am actually helping her with proof reading her ethics paper (or at least I think I'm helping and not hindering ! LOL)

She seems to be feeling really good, except for extra fatigue.  We did go to the pharmacy last night and pick her up some multi-vitamins since she has finally agreed to try them.  We also had to get some gauze pads and paper tape to try and heal up the skin around her stoma; it's not doing well at all!  Hopefully, my idea to heal it up will work for her, if not I guess we will put a call into her doctor.
Only 16 more days until her surgery...I can't believe it's already here and her first semester of college will be behind her ! :shifty:

Hope your well and the kids are healthy! 
much love,
:heart:~T~:heart:


----------



## DustyKat

Thanks T...:hug:

Oh hun, you have so much on your plate and yet you still manage do a fab job with it all! Kudos to you mate. :thumleft: 

I'm counting down the days too! She is an amazing young lady T, but hey, I'm not telling you anything! I so hope her skin issues settle. 
I know, don't the semesters fly by! Sarah has just completed her second year. I still can't believe it! 

Enjoy your time together hun, you both so deserve the love, laughter and special moments.  

Dusty. :Karl:


----------



## Crohn's Mom

I decided yesterday to check Gab's Mayo Clinic account to see if we have a definite scheduled time for her surgery yet, we don't. However, they do have her pre-op appointments scheduled.  Starting on December 8th...only 9 days away! Holy cow ! It's here...
And...it's going to be busy, busy...11 appointments in 2 days ! My head is spinning already :ylol:
I'm so excited, and super nervous, for her ! 
Just going to hold my breath, cross my fingers, and hope she is cleared to have her reversal! She so deserves this to go perfectly !!


----------



## Tesscorm

Hope all goes smoothly, without a single glitch!!  :sun:


----------



## Dexky

Hopefully she'll have a very, merry Christmas!  I hope so T!


----------



## DustyKat

My fingers and everything else are crossed too T! 

Sending you both loads and loads of love and luck! I hope all the appointments go by without a glitch...:goodluck:

Dusty. :heart:


----------



## Crohn's Mom

So I'm being my usual paranoid and over reacting self again today :shifty-t:

It's final exam time for Gabrielle this last 2 weeks and it's starting to take its toll on her.  It doesn't help that she has now been off of her Cimzia for about 6+ weeks (this makes me worry more I think).
She's (only) complaining of being extremely tired, her back hurting and "just doesn't feel good", but that's enough for me considering ...
So...usually when I post here with my worries and everyone wishes her the best and crosses their fingers...she gets better ! LOL And that in turn confirms in my mind that I worry too much! That's ok tho...I'm doing it on purpose this time :ylol:
Please cross those appendages and wish her luck that she makes it through the rest of this week with no more "Issues" .. oh, and Ozzie is not doing so well either ! Her skin around the stoma has been inflamed for weeks and she can't seem to get it to heal up...we've even tried all new supplies with no luck :frown:
She just needs to make it until the 8th and 9th when she goes for pre-op and they clear her for surgery on the 13th !!

I'm so worried and extra nervous :shifty-t::shifty-t:


----------



## DustyKat

Oh T...loads and loads of extra hugs for you and Gabs...:hug: 



> So I'm being my usual paranoid and over reacting self again today :shifty:


No ya not T! You're being the fab Mum you always are!  

Sarah always struggles at exam time so I can well imagine how it must be for Gabs, poor love, she has so much more going on than Sarah does.

I am sending absolute *MEGA* loads of *LOVE* and *LUCK* Gaby's way!...

:goodluck::goodluck::goodluck:

She is such an amazing young lady T and an inspiration to us all! 

Loads of love to you both mate, :heart:
Dusty. xxxxxxxx


----------



## Dexky

Extra hopes and prayers coming her way T!!


----------



## dannysmom

Same here! One more week!!!


----------



## Tesscorm

Sending lots and lots of well wishes!!!  My daughter also STRESSES at exams... and the extra nervousness as these are their first finals in their first year!!  From all you've said, she's such an amazing girl :queen:, she'll get through these next few days just fine!!!

But, you've got my best wishes going out to you!!! :ghug:


----------



## radchic

Everything crossed for the duration! Good Luck.


----------



## Tesscorm

Just sending wishes that all is going well for Gab!!! :rosette1:


----------



## Crohn's Mom

Thank you! We're sitting here at the lab now at Mayo. Just saw her GI nurse and well.... Put it this way.... We'll all be sitting on pins and needles until after her colonoscopy tomorrow. She's definitely in a flare  we just have to see if it's done any damage yet. 
Oh I am crossing everything I have that no damage has been done to prevent her surgery!!


----------



## Tesscorm

:thumbdown:  :thumbdown:   I really hope the colonoscopy doesn't bring bad news!!! I'll be praying for you/her.  It would be so unfair to come so close and have a problem now!:ymad:

Sending lots and lots of wishes and prayers your way! :ghug:


----------



## Crohn's Mom

She just had a fluoroscopy done and everything looked great!! We're breathing a little easier now! We're thinking that means the colonoscopy may be good now too! 
Oh what a log day this is! Lol can't wait to get home and do it all again tomorrow haha!


----------



## DustyKat

Oh T, I am so sending all the love, luck, prayers and best wishes I can muster across the pond to you both...

:goodluck::goodluck::goodluck:

Onwards and Upwards!
Dusty. xxxxxxxx


----------



## radchic

Everything is still crossed.  Best of luck to you and Gabs.  I will be thinking of you.


----------



## AZMOM

Praying!!!!!!!!!!!!!!!!

J.


----------



## Crohn's Mom

Her colonoscopy was negative !! No problems found ! 
Next stop is her surgeons office and hopefully him giving the all clear for surgery! 
Poor girl is so tired from the anesthesia and we still have about 3 more hours of appointments today  

Thanks for all the lucky good thoughts! They seem to be working!


----------



## DustyKat

Just what I wanted to hear! anda:anda:anda:

Everything remains crossed! Give her a BIG but gentle squishy hug from me T, bless her...:hug:

Dusty. :heart:


----------



## Crohn's Mom

Ughhh!! The nurse who brought her out was wrong!!! I'll explain more later but everything was NOT great in there!
We're waiting for surgeon now and Gab is convinced she's not gettig her surgery  
I just needed to vent while I sit beside her wanting to cry knowing she's so scared. 
They better call us soon ...


----------



## DustyKat

Ugh, hell T!  That is sooooooo wrong! Grrrrrrrrrrrrrrr. 

Thinking of you guys, now and always. (((MEGA HUGS)))...:hug:

Dusty. :heart:


----------



## Crohn's Mom

Dusty .. Have you ever heard of Disuse or diversion colitis??
This is what were looking at being a problem now! 
I am furious and still waiting on the surgeon to see what he thinks :/


----------



## DustyKat

I have read about it in the past T. I guess you have sort of figured out what it means, that being the remaining colon that has been bypassed by way of an ileostomy, or colonoscopy, becomes inflamed. To me they seem to be suggesting that it is not related to her CD if that makes sense otherwise why not just say she has active CD there. 

It is a bit grey as to what causes it but they seem to think that is a result of a lack of long chain fatty acids passing through the colon. Now I don't know how this works in relation to CD but for most people, not all though, that have had stoma's for other reasons it resolves when they start passing faecal matter through the area again. 

Dusty. :hug:


----------



## Crohn's Mom

She's cleared for surgery!!!! )

Going to eat and then home! 
I'll explain all this craziness later 

Thanks so much !


----------



## DustyKat

Thank god for that!!! :applause::applause::applause:

:mademyday:
Dusty, xxx


----------



## Wife2Crohns

I don't know what I would do if my girls got sick....I would just die. You and yours will be in my prayers.


----------



## Tesscorm

So glad it worked out!!!:dance:  Was so disappointed for Gab and you when I read your earlier post!:frown:

I hope there are no more glitches!!!!!!!!!!!:ghug:


----------



## Brian'sMom

Hope and pray all will go smoothly now. I hope you post what that other stuff meant; (Disuse or diversion colitis) if you have time...or want to 

Give Gab a hug from me


----------



## Dexky

Just catching up T!  I love riding the roller coaster and ending up on top of the hill  Good news!!!


----------



## Crohn's Mom

Ahhh finally, the day is over !:batty:

Thanks everyone for your support! It means so much :ghug:

Diversion Colitis is basically as Dusty described.
When the colon is shut down (for ileostomy or colostomy) it begins to "die" in a way (atrophy) and causes a colitis that is recognizable by eye.  It's supposedly very distinct in character.
It also causes symptoms...symptoms that mimic Crohn's !!
This is why, we now believe, that Gab has been "flaring".  Her low grade fevers, abdominal pain, and extra fatigue recently were caused by this diversion colitis.
I was furious when I heard this because, in my mind, we should have been forewarned when she got her ileostomy.  Also, I think they should have been watching out for symptoms; especially since we believed she was flaring.
I don't understand still why they don't discuss this before a problem arises, but I am glad I know now, and she is still able to have her take down surgery. 

When we were first told about it was after her colonoscopy.  Our regular Nurse Practitioner from the GI's office requested us to stick around so she could talk to us.  She said that she wanted to forewarn us that when we went to see the surgeon that there was a 50/50 chance he may be canceling the surgery and giving her a treatment for the DC for around 3-4 weeks until it healed.  Of course, we were not happy! 
So in-between that consult and the surgical one, I researched this and saw that for individuals that are candidates for a reversal than treatment is usually to just let it heal itself once the fecal matter begins passing through the colon again.  And I also read everything that Dusty posted as well.  Thank goodness the surgeon thinks that way as well ! :batty:

Anyhow, she was cleared !! :ylol:
The only hang up the surgeon seemed to have is he can't/hasn't decided how he will cut her.  His options are going directly through the stoma, going in laproscopically, or cutting her through her existing vertical incision.  If he goes in through the incision (which I believe he will...he's not happy with how her existing scar healed because of the high dose steroids she was on then and he wants to fix it for her) she will also still have the open hole where the stoma was that will have to heal from the inside out over a couple of months.

I also learned some new information today regarding patients with previous steroid dependance.  The NP was explaining that Gab will have to have a "big dose" of IV salumedrol (sp?) pre surgery, and possibly a short term taper afterwards.  She explained that any time in the next 2 or so years that Gab is put into any high stress situation (such as surgery, death of a loved one, etc..)that she needs to be put on a short term taper.  This is because her body is more than likely not to let its adrenal glands kick in when there's stress and it could be dangerous to her.  I had no idea !!  I thought once we were finally able to wean her after a year and a half that she was in the clear because she was "done".  NOPE !  So, I'm sharing this with all of you for future reference 
(Note: Gab was weaned from 120 mg prednisone a day down to none over a year and a halves time)  I'm not sure exactly if this has to do with dosage or not, I just know it has to do with "high dose steroid dependency".

It's like we always say...you gotta love to hate that little miracle drug !
I prefer to HATE it at this point ! :ylol:

Thanks again everyone! I'll update again on surgery day!! 
Sorry this is so long but I wanted to explain those few things with the DC and the steroids 

much love!
~T~


----------



## DustyKat

Whoa T, what a day! 

Diversion colitis isn't that uncommon at all in people that have stomas for more than 6 months. I read about it quite a while ago and it was one of those things that got filed away in the recesses of my mind! :eek2: I hadn't given it another thought until you mentioned it. I do remember though that all of the studies I read, I think it was all, excluded IBD patients from their research. 
I agree with you T, given that it is not a rare phenomena I think you should have been told about its possibility and that it may well mimic the inflammation of CD. Perhaps when people have stomas for over 3 months and they are exhibiting symptoms then a colonoscopy is not out of the question. 

I don't know what planet I have been on T but I didn't realise that Gabs had been on Pred for that long and yes, steroid crisis is something that you need to be aware of until the adrenal glands are fully functioning again. After being on such a high initial dose and then a lengthy taper it does take the glands a quite a while to fully take over the task again. 

Ahhhhhhhh T, I am so, so, so happy for Gabs that she has been given the green light! 

Onwards and Upwards Miss G! 
Dusty. xxxxxxxx


----------



## Dexky

I don't know what Salumedrol is but that sounds like a tall order!!  Are you and Gabs supposed to work out, on your own, how much stress is going to be caused in a given situation??  I don't like it T!!


----------



## Crohn's Mom

Thanks Dusty and Dex 

Dex Salumedrol is basically a more potent form of prednisone in an IV form. ~ Liquid steroids.
I'm not quite positive on the "levels" of stress we're supposed to look out for either ?? It's kinda of scary really...Gab is the type that hides her emotions very well and keeps that smile on her face.  :eek2:

Dusty, I may not have ever put her initial doses of steroids on here because in the beginning of coming here I read other posts and couldn't find anyone with doses that high and didn't want to scare people.  It was awful as you can imagine.
Her surgeon actually made the comment yesterday of .. something to the effect anyhow..."those damn steroids probably caused your abscesses" 
He said it while we were discussing her previous state of health, and after Gab told him she is really scared that he will get in there during surgery, see something awful again, and not be able to reverse her.  Poor girl...she's having a hard time believing that this is actually going to happen...and last after it does.  Hopefully time will show her otherwise :eek2:

OH ya...I almost forgot...check in time for surgery is at 5:30 a.m. and surgery at 7:30 !! Whoo hoo! We're first ! :ylol2:


----------



## Crohn's Mom

I wanted to mention the funniest part of the two days of pre-op.
Gab keeps telling me to get prepared because her "new wardrobe" is going to be quite expensive...she says you know, bathing suits aren't cheap these days and once Ozzie is gone I will be living in only those !!

:rof::rof::rof::rof:

She's a nut ! :lol:


----------



## Brian'sMom

AHHH Florida!! Its 30 degrees here in Kansas, no bathing suits!!  I'll be thinking of you and Gabs and praying all goes perfectly. She definitely has a great positive personality!


----------



## izzi'smom

So happy to hear your most recent mews and I'll be thinking of you and wishing for the best possible outcome...(((HUGS))) for the rough journey!


----------



## DustyKat

Oooooooo, I love an early start!  

Awwwwwww T, ya just gotta love that girl! :hug: 

Okay...0730 Monday your time is 2330 Monday our time...damn! Oh well, I sure hope there is some news when I wake Tuesday! 

Pleeeeeeeeeeease give Gabs a humungous squishy hug from me! Sending all my love luck and best wishes T! 

Thinking of you guys, always...:hug:
Dusty. xxxxxxxx


----------



## Dexky

Looking forward to the good news T!


----------



## kimmidwife

JUst wanted to wish Gabs good luck tomorrow. I will keep her in my prayers and can't wait to hear good news from you guys!


----------



## AZMOM

Prayers & long distance hugs. 

J.


----------



## DustyKat

Awake now T and thinking, hoping, wishing and praying that all is going well. Good luck for tomorrow!...:ghug:

Much love, :heart:
Dusty. xxxxxxxx


----------



## Tesscorm

Sending all my best wishes that all is going well!!! :ghug:


----------



## Mayflower537

Hope everything is going well!!


----------



## kimmidwife

Thinking of you and hoping all is going well.


----------



## Ian

Crossing my fingers for Gabs, hope everything goes without a hitch! Looking forward to your next update  x


----------



## dannysmom

Hope everything went well!!!


----------



## AZMOM

Alright T, too quiet.  Give us the skinny!  :ghug:

:ghug:

J.


----------



## Crohn's Mom

Did I confuse everyone ? Or did Dusty with her Australian time ? LOL

We have to be at Mayo at 5:30 tomorrow (Tuesday) and surgery is at 7:30 

Today she has just slept, and slept and slept some more and is still sleeping 
The only prep she had to do was to take a ton of antibiotics 3 different times today.
I'm glad they prescribed some nausea meds as well, because she sure needed them!
I finally got her to wake up long enough to shower with her disinfectant scrub that is required.  
Poor girl, but it will be sooo worth it ! 

We have to be up around 3:30 a.m. and leave our house by 4 ! Wowza ! (It's 11 here right now...guess who's not sleeping but a wink )  My pulse is 106 resting right now...I had to check it because it feels like it's pounding out of my chest ! arrggh...I think I must be a little stressed even tho I pretend I'm not LOL

Thanks for checking in on us! Hope I didn't confuse everyone  
Tomorrow is the big day!


----------



## AZMOM

T - I stay confused so you are in good company!  You can sleep tomorrow :ybatty:

Love you - 

J.


----------



## DustyKat

F***, that was probably me that confused everyone! I was up and down like a honeymooners nightie! :eek2: 

Aha, no prep girl! Makes a nice change T,  

Yikes! Just about check in time for you guys! Thinking about you and sending loads and loads and loads of love! 

Dusty. :heart::heart::heart:
xxxxxxxx


----------



## Dexky

I hope you got some sleep T.  I'll be thinking about you guys today


----------



## Crohn's Mom

We just checked in!  

Just thought I'd tell y'all we've at least made it to the hospital, and only 4 mins late! Not bad for less than 2 hours sleep. Thank goodness for adrenaline ! LOL 

Will update soon- thanks everyone for all the love !


----------



## DustyKat

Thanks T! 

The lovin', hopin, prayin' and wishin' is going strong! 

Much love! :heart:
Dusty. xxxxxxxx


----------



## Crohn's Mom

They took her in  
Said the operating room is reserved for 2 1/2 hours ... I liked hearing that soo much more than compared to the last 6 hour one!! 

She was sooo excited and giggly as they wheeled her away! 
Man I love that girl more than life itself !


----------



## Tesscorm

Thinking of you guys! :rosette2:


----------



## Crohn's Mom

Ding dong Ozzies dead, Ozzies dead, 
Ding dong Ozzies dead, the wicked stomas dead!! 

Whoo hoo it's over and she did amazing he said!! I get to see in in about 2 1/2 hours!!! 

I'm sooo happy !!


----------



## Tesscorm

Woohooooo!!!!!!!!!:applause::luigi::applause:

Get out that credit card!  You've got some shopping to do!!:banana::banana:


----------



## Mayflower537

:thumright:Yay!  Glad to hear it!


----------



## Kelly2

Crohn's Mom - Being new to this site, I just read your surgery journey from beginning to today - and was so moved by everything you have been through.  When I read what Gab wrote about you in that competition it brought tears to my eyes.  I just wanted to say that I wish you and Gab all the best with the reversal surgery.  I can totally relate to everything.  My daughter was diagnosed at age 12 with crohns and went through a period when it became severe and stopped responding to meds.  We too went through an almost identical journey like you did - with the ileostomy and all the challenges and relief it brings - to the reversal.  If you need any advice or have any questions, just know that you are not alone - we are all here for you.  Take care.


----------



## DustyKat

This is just the best news to wake to!!! You have really made my day T!!!

It seems like only yesterday that Gabs was last in surgery and yet from that day, all those months ago, you have both remained so strong, determined and focused. I will never forget how steadfast, positive and reassuring you were to me when Matt had his surgery, only a matter of 2 weeks later, and for you and Gabs it was all still so new and frightening. This wonderful outcome is so deserved for Gabs and you too T. I wish more than anything that her recovery is speedy and uneventful. 

Now give that girl a humungous squishy but gentle hug from me and tell her well done! :hug::hug::hug:

:mademyday:
Dusty. xxxxxxxx


----------



## kimmidwife

Yay! So glad to hear the good news. Wishing her all the best!


----------



## radchic

YIPPEE!!!!!! That is just great news.  I have been thinking of you two all day.  Couldn't wait to get home from work to check for an update. Best of luck for a speedy, unremarkable recovery.


----------



## Brian'sMom

Awesome awesome awesome!!!!!!!!!!


----------



## dannysmom

Great news Tracey!!!  (I hope your heart rate is returning to normal now. 106 while resting is way too high.)


----------



## AZMOM

T - BEST Christmas present ever 

Loads of love, J.


----------



## Dexky

That's the first thing that went right for me all day!!  Yippppppeeeeee T!  So happy for Gabs and you:banana:


----------



## Kat

So happy for you both, as tears of joy roll down my face!  You are both an inspiration to me!  What a journey...  What a new beginning!  Happy shopping!


----------



## Crohn's Mom

I am so truly touched by all of the support from everyone here, It means the absolute world to me; more than you will ever know. :heart::heart:

Kelly2, thank you so much for your thoughtfulness   After I've hopefully had a bit of sleep tonight, than I will try and find your story to read.  Ours do sound very similar.

Gab had a pretty good day considering.  She is in pain of course, it's to be expected.  However, it's nothing compared to the pain she had post surgery in March.  I am pleased with that.
Also, she didn't wake up with any extra tubes this time! No catheter, No JP drains, and especially NO OZZIE ! :ylol:  she's already been up and to the restroom to pee a few times ! Also, We can already here grumbling sounds in her bowels! All good stuff 

I had a talk with her the other day and was trying to explain to her that she will most likely experience some phantom Ozzie moments since he was around for nine months, and was definitely a part of her every experience.  Well, I have lost count at how many times she has told me that she keeps thinking he's still there and reaches down to "quiet" him and realizes it's gone.  that and she keeps asking why they are taking so long to take her back and do the surgery and how she just knew it wasn't going to happen   Poor girl, I can't wait till her pain meds are lowered and she can remember that she's had the surgery and it IS REAL AND GONE :ywow:

I am beyond tired, but I'll catch up when I get home  LOL.  
It's ironic that we are on the same floor, with the same favorite nurse, and the same room as the March surgery !!  And we were pleasantly surprised that they remembered her and I the moment we came in 

In fact the only negative experience that's happened so far was nothing to do with Gab.  I went to the nurses station and politely requested a cup of coffee.  the tech lady on duty says "Sure you can have coffee, but would you like some crackers, or a snack bar, or something to eat?" I simply said, no thank you just coffee please.  So as I start to walk back to her room, this tech follows me a bit and says..."but you're sooooo skinny, are you sure you won't eat some crackers?? Please??"
WTF ?? Seriously, people do this ? I mean, does she think I'm not aware of what size I am ??? I'm quite offended, even tho I'm sure in her mind she meant well.  Still, no excuse ! :mad2:

Other than that...It has been one hell of a well deserved amazing day for both my daughter and myself !! :rosette2:

:dance::dance::dance:


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## DustyKat

Thanks so much for the fab update T! If only you could see the grin on my face and the tear in my eye...:hug: 

I am just so incredibly happy for Gabs...

Onwards and Upwards!
Dusty. xxxxxxxx


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## izzi'smom

Thinking of you guys today!! So glad to hear things are going well and hoping it continues! (((HUGS)))


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## AZMOM

T - I'm grinning for you!! Tell that nurse you'd love a glass of wine to go with those crackers. 

Hugs to Gabs and SAYONARA OZZIE!

J.


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## kimmidwife

I have to agree with AZMOM! Keep us posted on how Gabs is doing. I am glad she is doing so well!


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## DustyKat

Hey T, :bigwave:

How are you both holding up? 

Thinking about ya mate, :hug:
Dusty. xxxxxxxx


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## Crohn's Mom

Coffee in hand 24/7 and my eyes are being held open with toothpicks...pink ones for style of course ! 

Oh...you meant the surgery patient ?? :ylol2:

She's doing great for the most part.  Little spikes of a fever here and there, pain is up and down, and the biggest problem until today was her heart rate.  The nurse came in the night before last and woke her because her heart rate was 139 while sleeping.  They called up an emergency EKG because she seemed to be a bit short of breath and was complaining of chest pain; they also quickly drew some bloods.  Everything was "normal", Thank God!, but it took a day and a half for it to lower to normal ranges. :shifty:  It was definitely scary for a bit, especially for Gab as this sent her into major anxiety and panic attack. Which in turn didn't help in trying to lower the heart rate. :ywow:
But, all seems well with that now ! :kiss:

Her bowels are making all the noises they are supposed to, but no movement just yet.  Its causing her some discomfort, but I expect this is normal while it's moving through for the first time.
We're hoping it happens today so we can possible go home tomorrow ! :smile:

Oh ya, and she went off the of pca pain pump yesterday already, and is now just taking percocet every 4 hours as needed, with Torradol in between for any breakthrough pain if needed  

I'll update more later, after I change my toothpick attire of course !


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## DustyKat

Oh no! poor Gabs, bless her...:hug:...I hope things now stay settled T. She so deserves to have things go her way. 

Patience Mama!, she only had her op Tuesday! Give them tha bowels a chance to wake up and realise they have a job to do again! :lol: 

:hang:...Mum! You do know you are doing an absolutely fabulous job don't you? Of course you are!  

Thinking of you both, always. Sending loads of love, luck and wishes across the pond! :Karl:
Dusty. xxxxxxxx


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## Crohn's Mom

I think I need to read some other resection threads on here so I can have a realistic idea of how this waking up of the bowels really works... And not just the dear surgeons day to day well maybe's lol. He came in today and backed her off of the clear liquids only and told her she's only allowed to sip a little now. Her belly is hard and distended. I'm not worried per say... Just uneducated in this particular department at the moment  not for
Long tho! Lol


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## Tesscorm

Wishing Gab continuing improvement day by day!  :highfive:  And hoping you're both able to go home soon and enjoy the holidays!! :dance:


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## DustyKat

You're doing fine T, you really are! :hug:

To be honest I wouldn't be looking at anything before Saturday or Sunday and generally the farting will start a day or two before the bowels work. 

Is she chewing gum and/or sucking on barley sugar? 

Much love, :heart:
Dusty. xxxxxxxx


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## Brian'sMom

T- does the heart rate episode have anything to do with the adrenal gland thing you talked of earlier?


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## Crohn's Mom

I'm not sure of that, but trust me..while it was happening..I was on my handy dandy iPhone looking up adrenal crisis and comparing ! She did seem to have quite a few of the symptoms on the list.  Maybe it was a small episode that her body resolved itself ? I don't know..but if It was, I see it as a good sign that her body took over the fight! 
All speculation on my part of course lol.


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## AZMOM

Patience T......love your heart, we are too much alike! . Get some cashmere tipped toothpicks and be sweet to your eyes. 

Keep us posted and tell Gab we're thinking poopy thoughts on her behalf . 

Hugs

J.


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## kimmidwife

Glad to hear she is doing better. It does indeed take the bowels time to wake up. Give it time. You don't want to rush things. I know being in the hospital stinks and I am sure Gabs can't wait to get home. Tell her we are all thinking of her and rooting for a fast recovery!


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## Dexky

I hope things begin moving for her soon T!  I guess I'll just have to check back tonight.


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## Crohn's Mom

Toot-toot! Toot-toot! 
The trains beginning to pull out of the station!  



Sent from my iPhone using Tapatalk


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## Crohn's Mom

Well I guess I better put on my patience pants cause her surgeon is in absolutely no hurry to have her leave. Lol. He still won't move her past sipping clear, uncarbonated, liquids. He said "you're a special, special case- lets just leave it at that" after he told
Us again how very slow we need to take this. 
Well- you don't just "leave it at that" with this momma bear lol. The nurse is going to go read over his notes when she gets a few minutes and see what his thinking is, (shes intrigued as well) and why she's a "special case" - besides her obvious specialness!  


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## DustyKat

Ahahaha, go T! 

They love you guys and just don't want you to leave, don't cha know! I doubt the surgeon will put that in the notes though! 

Ahhhh T, Gabs has been through so much and aside from being very special I wonder if your surgeon is like Matt's. I know he kept us longer with both hospital admissions than was probably necessary because deep down I think he just hated the thought of what Matt was going through, perhaps he still had children around Matt's age, I don't know, and just wanted the best possible outcome for him. (((shrug))) The Crohn's specialist we saw before surgery said to me...You know Tony (the surgeon) is going to hate doing this (the resection). I think that pretty much summed things up...he took extra special care of him.  

Hell that was rambling! Good luck T and let us know how you get on! 

Loads of love, :Karl:
Dusty. xxxxxxxx


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## izzi'smom

Sending patient thoughts your way lol!


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## Kelly2

I am in the hospital myself, so I just caught up with everything that has been happening the past few days.  They found a mass in my colon - can you believe that!  My daughter is the one with Crohns and I am just like all of you - always taking care of our kids and not really paying attention to ourselves.  I guess I let it go too long. 

So happy to hear everything is going smoothly allbeit at a slow pace - nothing wrong with that  Its so nice that you have a surgeon who truly cares about Gab.  Sending you my best wishes, and really pray for Gab's recovery.

Kimmidwife- How is Caitlyn doing?  I was hoping for her to respond to the Remicade by now, but did some reading and it looks like it can take a while sometimes.  Has the Entocort kicked in yet?  I so hope things are going better for you too.


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## Dexky

DustyKat said:


> I know he kept us longer with both hospital admissions than was probably necessary because deep down I think he just hated the thought of what Matt was going through
> Dusty. xxxxxxxx


No!!!  He was afraid you'd emasculate him in his sleep!

T!  Patience dear....this from someone who hates hospitals!  Of course Gabs is special.  Exceptional parents have exceptional children!


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## Crohn's Mom

Gab gets to try soft foods today and.... If they settle ok with her ... We're going home !!! 

Kelly2, I'm soo sorry to hear you are hospitalized! That must be awful for you! ;( 

Dex: thank you  I really needed to hear that , more than you know! <3 


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## Kelly2

How is Gab doing with the soft food diet today?  Hopefully, all is well and you guys will be on your way home in no time.  Are you going to follow a specific diet now that Gab has had her reversal done?  After my daughter's reversal, we decided not to feed her any meat as it is so hard to digest, and also avoided all dairy and spicy food.  It may take a while for her BM to regulate once they get going.  If this happens, try not to worry.  I remember in the beginning when we got home it took a while for everything to settle down - almost as if the colon was "waking up" and remembering what it is supposed to do. We used Metamucil and still do - as her ascending and 1/2 transverse colon was removed  and she does just fine on that.  Right after surgery the doctor prescribed some Lomotil which we used for a little while. 

Thanks for your well wishes - I appreciate them.  I also wish I could get out of this hospital and go home


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## DustyKat

Dexky said:


> No!!!  He was afraid you'd emasculate him in his sleep!


Well I never! As if I would do such things! :tongue:

Yicketty yikes! I answered this a while ago and now it's gooooooooooooone! Hmph, Dex probably deleted me. :emot-cop:

This is sooooooooooooooooo fab to hear T! Bet you two couldn't wait to bust outta there! I hope all goes well for Gabs T. She is well overdue for things to go her way, bless her. :hug:

Just gotta ask though T, did they discharge her before she had her bowels open? 

So happy, happy, happy! 
:mademyday:
Dusty. xxxxxxxx


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## Crohn's Mom

Thanks, and No Dusty they didn't...the train left the station yesterday! LOL

Kelly, Gab has been on a very restricted diet for nearly two years now, self imposed to help with her digestion.  I'm quite sure she will continue it for sometime because she is afraid of doing any possible, preventable, damage to herself again.  I can't remember the last time she ate red meat, dairy, vegetables, or pretty much anything except noodles and turkey paninis LOL.  She's very particular 

Ahh...we're both so happy to be home! I think myself more than she.  She tends to like the safety of the hospital for a bit


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## Dexky

Crohn's Mom said:


> She tends to like the safety of the hospital for a bit


I'd be afraid to move a muscle for a week!  I'd just know I was going to rip something open  Glad you're home!!


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## Crohn's Mom

Speaking of "open" ... Does any one want to see what it looks like when an ileostomy is reversed through the stoma itself and NO other incisions? 
(yes ... We're happy about less scars! Lol) 
I'm asking first because of the weak stomachs for this kind of
Thing out there... Even tho it's really not so bad ... Just a hole  


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## Tesscorm

Glad you're home!!!  The beginning of a wonderful Christmas!! :rosette2:


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## izzi'smom

So glad to hear things are going well and you are home...and YES! I vote for pics!


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## kimmidwife

So Glad you guys are home Yay!!!!. All good things and very happy holidays!!!


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## DustyKat

Crohn's Mom said:


> Speaking of "open" ... Does any one want to see what it looks like when an ileostomy is reversed through the stoma itself and NO other incisions?
> (yes ... We're happy about less scars! Lol)
> I'm asking first because of the weak stomachs for this kind of
> Thing out there... Even tho it's really not so bad ... Just a hole
> 
> 
> Sent from my iPhone using Tapatalk


Would I be stating the obvious if I said...yes? 

Dusty. :ybiggrin:


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## Crohn's Mom

If anyone is bothered ... Blame it on Dusty, and make her remove it! Hahahah  
By the way... The irritated skin around the hole is from the wafer pre-surgery. If you remember,
I was explaining how Ozzie wasn't being very nice for a while. This actually looks good compared
To a week ago  


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## Kelly2

Thanks for posting the pic.  I wish my daughter would let me take one of her scar - you can barely see it anymore - it looks beautiful


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## DustyKat

Thanks T! You've made my day! :lol:

Oooooo, nice. The wound that is, but my oh my poor Gabs. I well remember you talking of the problems she was having with her skin, thank goodness it is on the mend. What a relief it must be not to have the wafer on it! 

Onwards and Upwards T! 
Dusty. xxxxxxxx


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## Dexky

I vote no!!!  Oops!  Um...it looks.....good?!  I'm sure it will look good in a few more days


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## Crohn's Mom

I know..it's hard to believe that looks "good" right ?
Poor girl...you should have seen it a couple of weeks a go...it was kinda horrific
:ywow:


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## kimmidwife

I am so glad she is improving. Once the hole is closed you can try mederma on it to help it heal.


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## dannysmom

Tracy - I am so happy you and Gab are home and everything went well!! I hope she continues to do well!  Merry Christmas!


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## izzi'smom

Wow...I can't imagine how sore it must have been for her with that irritation...hoping the healing process is speedy and easy!!


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## Crohn's Mom

Just stopping by to tell everyone that Gab is doing really good !
I am amazed at how uneventful things post-surgery are this time around.  What a difference it makes when you're body's not knocking on deaths door  before surgery :ybiggrin:

Her incision is healing nicely, and the skin around it is looking really good too.  I think the skin is actually going to take longer to heal than the incision.

It's strange.. I considered Gab "healthy" (well pretty much) before this surgery and thought she looked good in weight as well.  However, she kept saying that having Ozzie was making her "fat" because she felt bloated all the time.  Now, its just 9 days past surgery and she is so tiny again.  She is eating, but not much because she is not happy with just how awake her bowels are now.  If you all remember, Gab never had a problem with diarrhea as a symptom of Crohn's; she always had the opposite problem and was lucky to go once every couple of weeks.  So this is VERY new to her and upsetting.  Hopefully it will slow down after a few weeks.  The surgeon still thinks that she will not have to worry about Small Bowel Syndrome, but I'm not so positive yet.  Time will tell.  I've convinced her to drink at least 2 boost drinks per day to supplement the nutrition she's not getting right now, so at least she's cooperating with that.

So, other than her losing weight rapidly she's doing wonderful and couldn't be happier !  She's so deserving of this :heart:


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## DustyKat

Woohoo! Doing the happy dance big time here! anda:anda:anda:

She surely is so very deserving of a positive outcome T! :heart: 

Hmmmm, well you know the issues Sarah has had with the diarrhoea over the years and honestly T I would be inclined to get Questran prescribed now. Sarah's GI prescribed it at this point post op but as you know, after a couple of doses she refused to take it, it did work though. It goes without saying that Gabs is older and more mature than Sarah was and she has had to endure far more than she so for her Questran may only a minor glitch. 

I hate to say it T, and I see you have your doubts, but I would be hard pushed to believe that Gabs isn't going suffer with some degree of bile salt malabsorption. I know Gabs had 100cm plus of bowel removed??? but I can't remember how much of that was small bowel. I'm not suggesting it won't take up over time but I don't think it is something that will happen in the short term, hence why i think she should maybe start taking something for it now. Psychologically, and confidence wise, it can make the world of difference.  

:mademyday:
Dusty. xxxxxxxx


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## Crohn's Mom

I just dug out her surgeon's notes from the first surgery, and it says that she has approximately 240-250 cm (so between 7-8 feet) of small bowel left.  Hmm...correct me if I'm wrong, or confused, but there are 21 feet of small intestines and 7 feet of large.  If she only has 7-8 feet of small bowel left, then that means she had around 14 feet removed ? that's like 400+ cm right ? He told me she had approx. 100 + cm removed, so that would be around 4 feet, not 14 ???  What am I screwing up here ?? LOL I'm really confused now, and maybe even a little pi***ed off as well because I'm feeling like we were not informed correctly.
I know her surgeon kept saying after this surgery that things were "really, really tight in there" and that's why she has to go very, very slowly introducing foods.
Dear Dusty....help me out here would ya ?? LOL


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## DustyKat

Right, the small bowel, on average, is twenty one and half feet long. The Duodenum is about 15 inches in length, the Jejunum is 8 feet in length and the Ileum 12 feet long. 

Your conversions, feet/centimetres, are correct T. If she has 240-250cm *left* then Gabs has had all of her ileum and perhaps even a little of her jejunum removed. So yes, most likely 12-13 (350-400cm) feet of small bowel. 

You haven't screwed up anything based on what you written, the critical point here what is left as opposed to what is removed, by that I mean...it does say *left*. I'm in no saying you have read it wrong T, I'm just double checking. I can well imagine your shock if this is indeed the case because there is a vast difference between 100cm + and 350-400cm! 
It can also change the treatment for the resulting diarrhoea as fat in the stool may well becomes an issue and Questran then becomes ineffective...



> Patients with limited ileocolic resections (frequently Crohn's patients) don't have severe problems. Diarrhea in a patient with a preserved ileal length of >100cm is usually due to bile salt induced colonic secretion.  Such patients benefit from treatment with a bile-acid binding resin such as cholestyramine. Diarrhea in patients with <100cm of ileum remaining may have steatorrhea secondary to a reduced bile acid pool.  Hepatic synthesis of bile acids cannot keep up with intestinal loses. Diarrhea is due to the malabsorbed fatty acids which stimulate colonic secretion. These patients benefit from a low fat diet with supplements of medium chain triglycerides which do not require bile salts for absorption. Ox bile supplements have also been tried. The use of quantitative fecal fat collections are crucial to accurately assess the mechanism for the diarrhea. If the diarrhea is secretory (no osmotic gap and no steatorrhea) then cholestyramine is used. If the diarrhea is osmotic (osmotic gap and steatorrhea present) then low fat diet is warranted.


Reference: http://www.bcm.edu/gastro/VGICC/GI-M0068/09-DISC.HTM

I don't know if psyllium is useful in these cases either. 

I don't like the sound of the surgeon saying it was tight in there because it adds weight the amount being left as opposed to taken out.  

I think I would be getting in contact with the surgeon T and having a chat with him. Hmmm, probably what you are already thinking! 

Much love, :heart:
Dusty. xxxxxxxx


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## Crohn's Mom

I checked and rechecked the report and it definitely states, in two different places, that she has 240-250 cm of healthy small bowel left  
Ughhh I'm mad as hell! 
There is a chance, in my distress at the time, that he did say 400 and not 100


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## Tesscorm

Hi T, just wanted to send wishes that Gab continues to improve and is able to enjoy all the holiday festivities! :dance:

Not sure what the implications are from the above discussion  :confused2: , but hope it doesn't bring any complications to Gab :queen:!

:rosette2:


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## DustyKat

Oh T...:hug:

I will gladly grab with both hands being wrong here mate. 

When you get the chance clarify with the surgeon how much small bowel is left. 

Did they just say small bowel in the report or did they break it down into the sections, ileum and jejunum. I would have to lean toward them meaning the whole small bowel as I don't imagine, as professionals, they would only call the ileum small bowel. The reason I raise this is...if they are only talking of the ileum then 240cm of ileum left fits in with 100cm + being removed, these amounts fit neatly with 12 feet of ileum. 

God I hope I'm not confusing you T and making things worse for you.  

Much love, always. :heart:
Dusty. xxxxxxxx


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## kimmidwife

I have to agree with display about the questran it helped Caitlyn after her surgery last year though is she going to be on remicade I an not sure you can take I with remicade  Caitlyn is n trying lomotil 3 times per day.


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## Crohn's Mom

Now THAT would make sense to me! Having 240 cm left of the ileum!


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## kimmidwife

Okay that is weird. I sent my reply back when quest ran was mentioned by Tess and it just showed up at the bottom here? I don't know what happened. Crazy phone probably messed it up again. These smart phones are just not as smart as they are supposed to be.


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## izzi'smom

Just wanted to say I am glad things are going well and hoping the discrepancy in how much she has left was just a misunderstandin! ((HUGS))


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## AZMOM

T!!!!!!!!!!!!  Let us know what you figure out.  

I don't have Dusty's insight on this one but know that love and prayers are headed your way.  That - I have.  :ybiggrin:

J.


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## Tesscorm

Hope all is continuing to improve for Gab!!! :rosette1:


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## Crohn's Mom

Checking in with my moment to spare  

Gab is doing really well - I am amazed at how well she's healing this time around. 
The only "issue" we have is our weekly weigh in together and our jokes of which one of us is withering away the fastest lol. I beat her this week w 4 lbs lost to her 3 lbs! 
Seriously we eat (well she does), but I'd rather laugh w her right now while I play the watch and wait game, than stress over it. I mean , it could slow down and she will stop losing so quickly?? Right?? ( that's my story and I'm sticking to it ... For now) hehe.

I only have space in my mind to force the positives right now... Oh how I wish sometimes that this was a "Hey parents, give us all you got" board, cause man o man do I have some "raising kids" stories! Lol


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## Dexky

Not that I know anything about it T, but I'd think it's still early days for Gabs as far as getting over the surgery.  Shouldn't her appetite just continue to improve?

Yours, on the other hand.....Just what have you "withered" down to??


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## DustyKat

Hey T, 

I know you are watching like a hawk but what do you think about the weight loss? By that I mean, is she returning to a size she may have been pre pred/surgery? 

My kids were the opposite but they were anorexic, in the sense of little appetite, and very low weight before surgery so had gradual weight gain. 

Yes T, what are you down to? :hug:

Dusty. xxx


----------



## dannysmom

Hi T ... worried about you a bit.  Is your resting heart rate still high?  (Hoping you say no)

Earlier this year, when I was super stressed because of Danny's Cystic Fibrosis dx and lack of treatment, I came down with hyperthyroid/Grave's disease. My main symptoms were elevated heart rate and weight loss.  (Grave's is something super easy to diagnose and control compared to Crohn's!)

OK ...that was not positive ...
So happy Gab is healing well and she starts to gain soon!!


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## kimmidwife

Hi T,
Just wanted to see how you guys are doing. Hope you have a happy new year wishing you all good things in the new year.


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## Brian'sMom

The weight loss for you can snowball T. The stress can cause you to start losing weight, then it could plummet. No appetite from stress, and not sleeping...all burns calories. I'm worried about you too, along with Gab. Last January, Brian started doing better and that's when my issues set in...I'm way to embarrassed to say how low my weight got. I want you to catch it before it happens to you And please don't think I'm trying to stress you. I just want you to keep your body healthy too.


----------



## Crohn's Mom

Hi everyone 

I'm sorry, I didn't mean to make anyone worry about me ~ I'm still visible to the eye, so I'm ok! LOL.  Really, tho..this does happen to me.  I had finally managed to put around 10 lbs on a couple of months a go, and since my dear stomach can not handle more than a few bites of food about once a day, it is disappearing quickly; and the stress of life on top of it doesn't help much either because that always makes me lose weight quickly.  I've lost about 12 pounds in the last 2 weeks, but I'm hoping to wake up and be starving here soon because I sure do miss my food! I am a woman who loves her food !  I would also love to fit back into my clothes as well LOL.
As for Gab, she is now at her weight (minus around 2-3 lbs) pre-prednisone.  She is eating better and better each day, so I am really hoping that her weight loss settles and stays where it's at because she is a naturally tiny person as it is.  She is eating more and more each day, certainly 10 times the food I am, so yes, I am a bit concerned with the rapid weight loss, but not overly.  I think she still needs time to heal.
Her skin tone is wonderful again tho!  She's always had this beautiful olive skin, but after she began getting sick she has looked very pale for a couple of years.  For some reason now since this surgery tho she is getting her color back.
Other things like her energy are soaring as well! We're thinking that she was right all this time when she kept saying that Ozzie was making her sick.  It's strange how it helped her colon heal but seemed to have stopped other things from going back to "normal".  Or maybe we're both nuts and it's our imagination! LOL  
Time will tell.
Thanks everyone.  My life is rather crazy right now so I haven't had much time for anything except the family issues.  I hope you're all doing well, and I will try and catch up with all of your updates on your threads soon.

Much love !


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## AZMOM

Big hug T. Gab sounds great - time to take care of you. 

J.


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## DustyKat

Thanks for the update T...:hug:

It is sooooooooo fab to hear that Gabs is looking well and doing well.  Hopefully the weight loss will plateau soon hun, everything crossed! 

Take care and look after yourself T...:ghug:
Dusty. xxxxxxxx


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## Crohn's Mom

Doesn't she look just amazing  
Bring on a happy new year! We all deserve some good luck here!


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## Tesscorm

She certainly does look amazing!!!  I hope the New Year brings her nothing but happiness! :banana:


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## DustyKat

She is gorgeous T! An inspiration to us all! :hug:

Wishing you and your family nothing but love, health and happiness in 2012... 

Dusty. :heart:


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## kimmidwife

She looks fantastic! I am glad she is doing well. Happy New Year!


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## Dexky

Yes she does T!!  Roo and Gabs should be calendar girls


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## AZMOM

Yes!!!!!!! She looks great . 

J.


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## Brian'sMom

She's beautiful!! And looks so healthy  What a strong young woman.


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## Crohn's Mom

Hi everyone ! 

Hopefully we have come to the end of the "Our Surgery Journey" ! 
Gab went this morning for her post op appointment with the surgeon ~
She looks great and is healing nicely!  She is a slow healer so her incision still has a way to go yet, but it looks good none the less.
It's odd, she has a literal dent in her abdomen where Ozzie used to be ! She doesn't mind tho ~ she's just thrilled to be rid of it! :ylol:
She is trying to get over a couple of infections right now (Cellulitis on her feet, and a bad sinus infection) and then she can begin her Cimzia again and hopefully stay in this beautiful thing called REMISSION for ever! :rosette1:

Her surgeons parting words as we were walking out the door...

"It's been a pleasure Gabrielle.  I'm terribly sorry you had to go through everything you did in the last year, but you're going to do great now.  And...I hope to never see you again!" 
:ylol::ylol::ylol:

Today was a good day   Thanks everyone for all the continued support and sharing in the last year of our roller coaster ride of a journey! Now bring on that lifetime of remission ~ she deserves it! :thumleft:


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## dannysmom

Great news Tracy!!! Love it!


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## DustyKat

So happy, happy, happy for you and Gabs T! Long may the good times last! I am hoping, wishing and praying for a lifetime too! :Karl: 

:mademyday:

Dusty. xxxxxxxx


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## Kat

So excited for this journey to come to an end for you both.  Please know (and let Gabs know to) that you both have be an inspiration for my family, especially my daughter.  Sending our wishes and prayers that there may a lifetime of remission for Gabs.  

The Simone Family


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## Tesscorm

I'm soooo very happy for Gabs!!!!  She certainly does deserve (as do YOU!  ).  I hope she can start on her Cimzia soon and get on with her lifetime of remission!!!!!:ybiggrin::ybiggrin::ybiggrin:


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## kimmidwife

I am glad she is doing so well! I also hope she will continue with a lifetime of remission!


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## izzi'smom

Oh, how I love to hear wonderful news!! Hoping those infections are gone soon and that things are going smoothly in no time!! Congrats!


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## Crohn's Mom

I thought we were done with things "surgery" related, and we basically are.
However, I completely forgot that she needed a follow up on her kidney issues from before the first surgery. ( I like forgetting about how bad things were actually  )
So, she goes next Friday for her Nuclear Medicine Scan and another round of blood tests.
I'm hoping the kidney has repaired itself completely and she will be discharged from this doctor ! One less doctor in our list of many


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## DustyKat

I forgot about that too T! :eek2: 

God I hope the scan shows all is AOK, Gabs has had to deal with enough to last a hundred lifetimes! 

Sending mega loads of love, luck and well wishes!...:goodluck:

Are you going with her T? Sarah had one of those scans done, it's interesting watching the dye and the scanning.  

Dusty. xxx


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## Crohn's Mom

Thanks Dusty 
I went with her for the first one in June ? last year, but I didn't get to go back with her and watch :/
I'm actually not going with her this time. This will be the first appointment, ever, that I won't be!  :eek2: JJ and I have decided to take a road trip up to Missouri for his Spring Break next week so I asked her if she could find a friend to tag along 
I'm sure she'll do just fine.  She has other appointments that day as well ~ bloods drawn again and she has to pick up some machine for her sleep study appointment coming up soon.
My how times have changed when I am "ok" and know that she can handle this, and she has no hesitations about me not being there ! :lol:


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## DustyKat

That's a bugger you didn't get to see the first one. 

I hear ya T! Your baby is growing up! :lol: And what an incredible young lady she turning out to be! 

Ooooo, have fun on holidays! Maybe something will arrive in the post before you leave!  

Dusty.


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## Tesscorm

I'm soooo hoping all goes well at her scan!!!   Let her just put this ALL BEHIND her!!!:Flower:

And love the new picture!  She is really so gorgeous! :queen:


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## kimmidwife

I am wishing her good luck and all good results!. Where in Missouri will you be?


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## Crohn's Mom

Awe Tess thank you! 

Kim - we will be in St. Louis some but also (mostly) in Illinois as well.  We're just going to relax and visit w my brother ( who also has CD) - cookouts, camp fires, four wheeling, - good ole lil "redneck" fun ! Lol my brother is a good ole boy- I just love him!


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## DustyKat

Well knock me over with a feather T! I didn't know Dex was your brother!


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## Crohn's Mom

Lmao! As I was typing I swear I could hear u saying something of that nature in my ear !


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## DustyKat

I wonder if his ears are burning too? :ylol:


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## Dexky

Har....dee...har..har!!  Swing by here on the way T!!  I'll hook you up with some moonshine and wacky-tobaccy!  Ain't nothin' like moonshine and four-wheelin'!!


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## imaboveitall

What a story, I just read from the beginning...wow, just wow.
I guess this is what V's doc fears when he speaks of undertreatment. 

I'm very happy to read the ultimate outcome, though.
She is so lovely :smile:


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## Crohn's Mom

Thank you Julie 

That's exactly why I kept documenting everything...even my "crazy" "overreacting" moments; I knew in my heart it was going to be ok, and I wanted others to know it as well !


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## Crohn's Mom

just a little Reminiscing and hoping and worrying bump


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## DustyKat

Oh T...thinking about you and your gorgeous girl hun...:hug::hug::hug: 

Always, :heart:
Dusty. xxx


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## izzi'smom

Thinking of you girls! <3


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## saddad

*6mp*



Dexky said:


> Har....dee...har..har!!  Swing by here on the way T!!  I'll hook you up with some moonshine and wacky-tobaccy!  Ain't nothin' like moonshine and four-wheelin'!!


why are you no longer on the 6mp?


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## Dexky

This is an odd place to ask saddad, but ds failed to maintain remission on 6mp.


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