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 :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 out. :Karl:


Ok so details folks ! :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)

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

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....

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:

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.

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

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.

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.

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

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.

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

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

J.

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!

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:

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.

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

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

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.

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!!!

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:

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.

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

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.

Click to expand...

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

DustyKat said:

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

Take care hun, :hug:
Dusty

Click to expand...

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:

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 !

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

Awesome update T!! Thanks

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

I bet that will be one welcome homecoming!

J.

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:

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

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!

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!!

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.

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:

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)

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

Love, J.

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:

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 !

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

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.

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

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:

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:

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.

"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!

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.

Hey T,

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

Much love, :wub:
Dusty. xxxxxxxx

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

She is a very brave little girl. X

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:

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

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.

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!

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

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.

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.

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 !!

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

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 !!

Click to expand...

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

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.

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

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!

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.

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.

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.

Click to expand...

@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!!

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

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:

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.

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!

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!

Click to expand...

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:

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!!

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:

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?

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

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:

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

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!

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

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....

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

Dusty. :sun:

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

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!

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.

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

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.

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.

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

good luck with the appointment tomorrow

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

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

Click to expand...

@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:

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.

Click to expand...

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:

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

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!!!

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 !

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

Thanks Dex

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

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

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:

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!!

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:

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