Share Facebook


 
03-23-2011, 01:17 AM   #1
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
Our Surgery Journey

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

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 out.


Ok so details folks !
(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 !!

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


I forgot to mention....the surgeon said Gab has been suffering for many, many, many years...longer than anyone knew. (except...ME, MOM)
__________________
~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013

Last edited by Crohn's Mom; 03-23-2011 at 01:21 AM.
03-23-2011, 02:15 AM   #2
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Oh T you were just perfect! Not scrambled at all.

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. 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........

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

Much love,
Dusty. xxxxxxxx
__________________
Mum of 2 kids with Crohn's.
03-23-2011, 05:21 AM   #3
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
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....
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
03-23-2011, 07:11 AM   #4
JetWhite
Senior Member
 
JetWhite's Avatar
 
Join Date: Feb 2011
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
__________________
Jet

Diagnosed with Ulcerative Colitis October 2009

Azathioprine 125mg/day (at night)
Asacol - 1200g 2 x day
Amiltriptyline 50mg/day gradually increasing
Predfoam for flare ups and more than I expected
Tramadol with paracetamol, more than I anticipated
Various daily supplements inc Multi-vits with iron
and watching what I consume

Sometimes : Pred tablets
Calcichew & Alendronic Acid ; Calcichew taste nice

I am so very glad to have joined the forum

03-23-2011, 10:06 AM   #5
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
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.
__________________
Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
03-23-2011, 12:56 PM   #6
JenEdwards
Member
 
JenEdwards's Avatar
 
Join Date: Feb 2011
Location: Jonesboro, Georgia

My Support Groups:
I am so glad that surgery is over for her. I hope she has a quick recovery. She sounds like an amazing young woman!
__________________
Jenny
Mom to Kailynn
Diagnosed CD 2/11
Azulfidine 2000mg
Folic Acid
Iron
03-23-2011, 12:57 PM   #7
CDDad
Senior Member
 
CDDad's Avatar
 
Join Date: Mar 2010
Location: New Jersey
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.
__________________
-Joe
Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
03-23-2011, 04:02 PM   #8
radchic
Senior Member
 
Join Date: Dec 2010
Location: windsor, Ontario

My Support Groups:
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.
__________________
Rachel
(mom of Lucas 18 CD 12/10)
Imuran 125mg
Pentasa 3000mg
materna
iron
03-23-2011, 07:08 PM   #9
Zoodles
Senior Member
 
Join Date: Oct 2010
Location: Ohio

My Support Groups:
I hope she has a speedy recovery and glad that you had somebody who could walk you through the shock.
03-23-2011, 10:07 PM   #10
DMS
Senior Member
 
DMS's Avatar
 
Join Date: Aug 2009
Location: Chilliwack, British Columbia
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.
03-24-2011, 11:17 AM   #11
tannersmom
 
Join Date: Sep 2010
Location: prestonsburg, Kentucky
Praying for you and your daughter! Hoping for a fast recovery!
03-24-2011, 09:13 PM   #12
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

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

J.
03-24-2011, 09:41 PM   #13
MomofIBD's
Senior Member
 
Join Date: Feb 2011
Location: Pennsylvania

My Support Groups:
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!
03-24-2011, 11:30 PM   #14
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
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) 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 !!

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 !
03-24-2011, 11:40 PM   #15
AndiGirl
Your Story Forum Monitor
 
AndiGirl's Avatar
 
Join Date: Jan 2011
Location: Alaska

My Support Groups:
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.
__________________
Diagnosed with Crohn's Disease in 2005

Pentasa 2x500mg (4 times a day)
Zofran (as needed for nausea)
Ginger Capsules (for Nausea)
Multivitamin
Zoloft 150 mg
Ranitidine 150 mg (2 times a day)
Entocort 3 mg (3 capsules by mouth for 8 weeks, then tapering to 2 capsules for three months)
03-24-2011, 11:52 PM   #16
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Oh man Tracy, you have !!!


It is so great to hear from you!


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!!!





Loads of love,
Dusty
03-24-2011, 11:54 PM   #17
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
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
03-25-2011, 12:36 AM   #18
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
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.
03-25-2011, 05:18 AM   #19
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
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!!!
03-25-2011, 07:51 AM   #20
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
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 !

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

@ 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!
So, we shall see what becomes of all this in time I suppose

@ 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 !!)
03-25-2011, 02:02 PM   #21
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
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!

Love, J.
03-25-2011, 02:34 PM   #22
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
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!

Take care hun,
Dusty
03-25-2011, 09:45 PM   #23
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
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!

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 ! (can you tell I've been locked up in this place too long ??) haha
03-25-2011, 09:48 PM   #24
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:

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

Take care hun,
Dusty

Yes Dusty, you ARE there...unfortunately !
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 !!
03-25-2011, 09:55 PM   #25
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
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 !

Last edited by Crohn's Mom; 03-25-2011 at 09:59 PM.
03-26-2011, 05:25 AM   #26
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
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.....

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...

Always thinking about you guys, good luck for tomorrow!

Loads of love,
Dusty
03-26-2011, 06:00 AM   #27
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
Awesome update T!! Thanks
03-26-2011, 11:19 AM   #28
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
YAY Tracey YAY Gab. That is ALL good stuff!!!

I bet that will be one welcome homecoming!

J.
03-26-2011, 06:34 PM   #29
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
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

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:
03-27-2011, 11:05 AM   #30
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
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
Reply

Thread Tools


All times are GMT -5. The time now is 01:33 AM.
Copyright 2006-2017 Crohnsforum.com