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

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

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

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

Good luck guys and keep us posted!

Much love, :Karl:
Dusty. xxxxxxxx
 
Just popping in Tracy to wish you and Gabrielle all the luck in the world with whatever biologic she chooses to go for, Cimzia sounds like the business!
You've both had such a rough time, I sincerely hope this biologic will put an end to all Gab's EIMs once and for all!
Good Luck and Lotsa Luv to you both
Joan xxxx
 
Does anyone have any idea of what could or may cause an intermittent, stabbing pain at the top of Gab's incision? Its right in the center, maybe a little more off to the right. She says it's completely new and "different" and really hurts when it comes on.
This may sound dumb...but could there be a staple or something in there ?
Or worse case...her gigantic abscess coming back ? (if that's even possible? I don't know..)

thanks in advance :)

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

Love J
 
Thanks Mom and Julie :) :hug:


I'm thinking maybe it's because she is starting to actually move around and be more active lately. Maybe a pulled muscle?
Hell, I don't know. If it were my own pain Id blow it off :lol: Ive had a hysterectomy and c-section through the same incision and still get random pain too. She's just had so many issues since the surgery, I can't help but wonder if it's something else.
Mom..I don't know a thing about abscesses opening up and draining out..Gabs were buried so deep inside they didn't know she had them until they opened her up. I'm glad you mentioned that though, so if it happens I will not freak out (too much hahaha).
 
I am aware that sometimes people suffer intermittent stabbing pains on their incision line and they usually describe it as being in one spot. The pain can occur at any time post op and for some people it can be six months out from surgery. I have heard it explained to them as being related to nerve endings caught within the scar or as being due to nerve regeneration, just as Julz has said and it does go away with time. I don't want Gabs to have pain but I do hope it is something as simple and non complicating as this!

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

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

Anyway sorry so long winded above but that's how it happened. It was hard & I was such a nervous worried nelly. The not knowing what's going, is it something new, is it.....or could it??? Your Mom intena is tuned in & you need to follow it when the warranted heed calls. Remember to really look at her & take note of any other changes in her. Ask ?'s & when in doubt go ahead & call the Dr. like Dusty said we are hoping it's post surgery healing pains. I too wish she didn't have any more it's not right as she has done way beyond what any child should have to. Hugs to you & keep us posted on how she is.
 
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Ahhh I'm so happy I put a call in to the Mayo to check on Gabs' spinal x-ray results. It's been a week today and I had still heard nothing. Doc said her x-rays were "A-OK 100% fine with no signs of Crohns or any other issues" He sounded so happy and sure of himself...And then I said well doc, that's great, then can you please explain to me why it is both of her legs keep tingling when she's walking ? UH OH ! He's not so excited now :ylol: Seriously tho, he said to get her into her local doc a.s.a.p. as he is worried about possible neuropathy and if needed he will get her in to a neurologist up there. Oh boy! Don't you all wish you had our life ? Oh wait...you do ! Yikes !

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

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

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

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

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

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

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


edit: I just want to say..you have to know Gab to understand what she did by speaking up today. This girl is the quiet and shy "I'm fine" person, and never ever complains to a doctor or questions what they have to say in reference to her. But man o man....did her fierceness come out when it came to her little brother :)
 
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Well I am so proud of Gab for being brave and assertive. And......I hope and pray she is w-r-o-n-g! :) Either way, now you'll know for sure and so will she. God love our kids - they are fearless!

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

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

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

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

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

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

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

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

Denial is very powerful! We have to fight it & let the truth come out! To deal with what the truth might hold as hard as that may be! Believe that there is hope even in the face of this awful disease! Nobody said that being a parent was easy! Oh but how I wish it would never ever have to be so hard!
 
Julz,
I'm so sorry you have so many members of your family fighting this disease. You are so strong!! I've always wondered if any more of my children will show signs of it. In our extended family, only my husband's sister has UC (diagnosed when she was 23) and then my son, that's it. Well, my husband has IBS symptoms. (Had colonoscopy). Do very many of your extended family have it too? (Sometimes it's a subject that doesn't get talked about).
 
Hey T!

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

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

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

:award2:

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

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

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

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

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

T.... Dusty can sure speak on my behalf! It really really helps that because we all unfortunately walk this same road together though hitting many different bumps with different size openings & mile markers along the way! A common road we ALL get!!!
 
Just stopping by to jump up and down :banana::banana::banana::banana:
and say....just checked out the pharmacy online to see if the Cimzia injections are ready for pick up. When I checked 2 days a go (pre-insurance approval) it said $8040.00 was the cost !! Today....$35 co-pay !!! ( sorry Dusty...I AM decimal challenged ! hahhah)

Happiness !!!!!

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

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

Have a wonderful Mother's Day all you momma's out there !!
You ALL deserve to have a relaxing day with no worries of illness and pain for your children! That is my wish for you ! (and Dex too :kiss:)
:Karl::ptiara::Karl:
 
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Oh man T, I am so happy and excited to be reading all this I am just about peeing myself!

The best Mothers Day present ever!

:mademyday:

Dusty. :wub:
 
Thank you Dusty ! :ghug:

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

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

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

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

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

Loads of love, :wub:
Dusty. xxx
 
Thanks guys! :)

Funny you ask Dusty (and never a stupid question) I have a lab form for bloods for Gab to check her B12 and other things in hand. We are going to try and go tomorrow morning. I will let you know how they turn out.:)
 
Tracy,
Wow, you not only have one very special daughter, but you are definately one very special and very loving mother. Yup, need those tissues for sure.
 
I totally agree with Margie! Your daughter is lucky to have such a loving mom. :)
 
Tracy, everything is crossed for your son. Dusty, good thinking on the b12. Every lab drawn for Lucas has b12 ans ferritin checked. His fingers and toes goes tingly and numb when he is due for his shot.
 
OH Geez....GAb is feeling so flipping good, and so full of energy today!
so good in fact that she ran out and got her little nose pierced ! :ylol:

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

I have to admit...she looks damn cute ! And, she has wanted this for years, so I am glad she finally got to do something she wants :)
 
Ahahaha, I say, go Gabs!!! Meh, a piercing is a piercing, you can always take it out!

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

:mademyday:
Dusty. xxx

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

She has a
Double barrel stoma

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

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

Interesting! (to me anyhow) :D
 
Elementary my dear Watson. Good for you T!

Great job, as always...:medal1:
Dusty. xxx
 
I didn't want to open a new thread so I'll just add this in here...

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

I can't wait until she gets home this evening and I can lay my eyes on her and make sure she's ok :D
Oh man...no wonder she's so ready to go...I am such a smothering momma ! (but soooo loving in my defense !):ylol2::ylol2:
 
Oh yeah T I can relate! I don't think I have cut the apron strings yet with Sarah! :ylol:

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

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

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

Much love buddy, :wub:
Dusty. xxxxxxxx
 
Actually T, I can't relate but now you've made me think about it and I don't like the idea at all!! I can well imagine how you feel though:)! I'm sure it'll be like every other stepping stone you've crossed. After a while, you'll look back on your fears and laugh because Gabs will be shining like a star!!
 
I really missed my daughter when she went off to college!!!! She was ready to go...which I agree is good...means you've raised her right...but she was a bit homesick for awhile. (Didn't want to come home...just talk here and there:)) Thank God for cell phones! We'd text each other a lot. She's good about texting right back and that helped. It got easier. And I had to force myself after awhile not to check in on her every night!!(Are you in bed?...its late!) My son graduates in 2 years...I'm hoping time goes slow. My youngest, Brian, has said: "I'm going to be here alone, aren't I." He's 5 years younger! I tell him...you'll be 13 then- have lots of friends over! The bigger kids had to be quiet when he was little and in bed...he won't have that issue :)
 
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I can't say that I understand, as I won't be in your situation for another 15 years. It will be hard at first, then you'll start getting into the college life with her. My mom had fun talking to me about classes, boys, activities. She told me about her college days in the early 1960s. She went to nursing school in Los Angeles, California. For a small town Alaskan girl, that must have been a shock at first. Hugs to you.
 
You're all much to sweet to me!
thank you so much for your kind words and especially for not making me feel like a nut case! :rof:

Gabs will be away having the time of her life, as she should be, and you will be left rocking in the corner plucking at the corner of a handkerchief! Yikes!
Click to expand...
EXACTLY !! LMAO !! Oh dear lord...I'm going to be one of those people reciting the same sentence to myself over and over and over and picking out my eyelashes one by one!

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

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

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

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

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

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

I can not wait to update in December and let you all know how amazing her surgery was ! :Karl::Karl::Karl: to you all ! Thanks, with all my heart :)
 
Oh hell T, now I'm blubbering! :lol: How loving and thoughtful that she suprised you with a visit...you should see the smile on my face! :ybiggrin:

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

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

Loads of love mate, :Karl:
Dusty. xxxxxxxx
 
That's great T! Will she be home for T-giving and Christmas? Sounds like she's doing great:)
 
I am so super happy for you! I also appreciate you sharing...thanks for giving us hope for our kiddos :) ((HUGS))!!
 
What an incredible story! Heartbreaking and inspirational! She sounds like such a wonderful girl - how can you not be so very proud of a young lady like she! :medal1:

Wishing all the very best for her upcoming surgery and a very, very speedy recovery! :dance:
 
How is Gabs going hun? I imagine she is home for Thanksgiving?

Love ya mate! :hug:
Dusty. xxxxxxxx
 
Thanks Dusty :)
Yes, she is home for Thanksgiving break and I am enjoying every second of it! I get 4 whole days with her:heart:

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

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

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

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

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

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

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

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

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

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

I'm so worried and extra nervous :shifty-t::shifty-t:
 
Oh T...loads and loads of extra hugs for you and Gabs...:hug:

So I'm being my usual paranoid and over reacting self again today :shifty:
Click to expand...

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

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

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

:goodluck::goodluck::goodluck:

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

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

But, you've got my best wishes going out to you!!! :ghug:
 
Thank you! We're sitting here at the lab now at Mayo. Just saw her GI nurse and well.... Put it this way.... We'll all be sitting on pins and needles until after her colonoscopy tomorrow. She's definitely in a flare :( we just have to see if it's done any damage yet.
Oh I am crossing everything I have that no damage has been done to prevent her surgery!!
 
:thumbdown: :( :thumbdown: I really hope the colonoscopy doesn't bring bad news!!! I'll be praying for you/her. It would be so unfair to come so close and have a problem now!:ymad:

Sending lots and lots of wishes and prayers your way! :ghug:
 
She just had a fluoroscopy done and everything looked great!! We're breathing a little easier now! We're thinking that means the colonoscopy may be good now too!
Oh what a log day this is! Lol can't wait to get home and do it all again tomorrow haha! :)
 
Oh T, I am so sending all the love, luck, prayers and best wishes I can muster across the pond to you both...

:goodluck::goodluck::goodluck:

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

Thanks for all the lucky good thoughts! They seem to be working! :)
 
Just what I wanted to hear! :panda::panda::panda:

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

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

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

Dusty. :heart:
 
Dusty .. Have you ever heard of Disuse or diversion colitis??
This is what were looking at being a problem now!
I am furious and still waiting on the surgeon to see what he thinks :/
 
I have read about it in the past T. I guess you have sort of figured out what it means, that being the remaining colon that has been bypassed by way of an ileostomy, or colonoscopy, becomes inflamed. To me they seem to be suggesting that it is not related to her CD if that makes sense otherwise why not just say she has active CD there.

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

Dusty. :hug:
 
Last edited:
She's cleared for surgery!!!! ;))

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

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

I hope there are no more glitches!!!!!!!!!!!:ghug:
 
Hope and pray all will go smoothly now. I hope you post what that other stuff meant; (Disuse or diversion colitis) if you have time...or want to :)

Give Gab a hug from me
 
Just catching up T! I love riding the roller coaster and ending up on top of the hill:) Good news!!!
 
Ahhh finally, the day is over !:batty:

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

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

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

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

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

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

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

much love!
~T~
 
Whoa T, what a day!

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

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

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

Onwards and Upwards Miss G!
Dusty. xxxxxxxx
 
I don't know what Salumedrol is but that sounds like a tall order!! Are you and Gabs supposed to work out, on your own, how much stress is going to be caused in a given situation?? I don't like it T!!
 
Thanks Dusty and Dex :)

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

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

OH ya...I almost forgot...check in time for surgery is at 5:30 a.m. and surgery at 7:30 !! Whoo hoo! We're first ! :ylol2:
 
I wanted to mention the funniest part of the two days of pre-op.
Gab keeps telling me to get prepared because her "new wardrobe" is going to be quite expensive...she says you know, bathing suits aren't cheap these days and once Ozzie is gone I will be living in only those !!

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

She's a nut ! :lol:
 
AHHH Florida!! Its 30 degrees here in Kansas, no bathing suits!! I'll be thinking of you and Gabs and praying all goes perfectly. She definitely has a great positive personality!
 
So happy to hear your most recent mews and I'll be thinking of you and wishing for the best possible outcome...(((HUGS))) for the rough journey!
 
Oooooooo, I love an early start! :)

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

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

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

Thinking of you guys, always...:hug:
Dusty. xxxxxxxx
 
JUst wanted to wish Gabs good luck tomorrow. I will keep her in my prayers and can't wait to hear good news from you guys!
 
Awake now T and thinking, hoping, wishing and praying that all is going well. Good luck for tomorrow!...:ghug:

Much love, :heart:
Dusty. xxxxxxxx
 

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