I feel like the worst mom ever today...

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We need to make an appointment with a surgeon.

He is putting her on Vancocin anyway, just in case she has an infection on top of her disease, but told us we need to go ahead with the surgery.

I am surprised that she has no deep disease: fissures, fistulas, but she is so severe that she needs a colectomy.

While she hasn't been on EVERY drug, she has been on every CLASS of drug and hasn't shown significant, reliable improvement.

@T- Gab is my hero...I have been thinking of her and desperately hoping that Izz can do as well as her. It still worries me. I have seen and briefly cared for an ileostomy but am more worried about Izz's reaction. I have so many questions but I think I need to grieve for a bit first.
 
Angie, wow. Just wow. A heavy thing. :frown:
But, I wish V could have surgery. If it were up to me only, and not the docs, she would. Like little dollface there, she has disease only in one (albeit different spot than Izzi) small area of bowel, all else is always clean. Dusty's kids' stories make me wish V could have that scenario of a normal life post-sx.

Scary for sure but what a relief. Poor darling...but after it's all over, a better life I'm sure. :rosette2:
 
Hey Ang,

As you know we are preparing for a colectomy on April 17th. Since Rowan is coming off Remicade and was doing so poorly, I talked with a naturalist nutritionalist here whom specializes in IBD. He suggested doing some allergy tests. I couldn't do them bc Rowan was too anemic. He spoke of doing gluten free or scd. I decided to try gluten free bc it was easier to implement. It has did wonders for her. She has pretty much stopped bleeding completely now and is feeling great. Just thought you might benefit from it too. Maybe? I really have to increase the miralax though bc it is such a binding diet. I mean she is a completely different kid in one week. Started seeing an improvement in 3 days. Idk if it was the diet or just a lucky moment in time of remission. But hey you have been following her story too so you know how bad she was doing. She hasnt really had any remissions since her first flare. I am going to start moving towards scd now. Figure it was worth mentioning.

My best to you and izzi.
 
Angie,

I'm so sorry Izzi is facing surgery, I can imagine it's breaking your heart. :Karl: But, this may be just what she needs to move ahead and live an active, pain-free life! Don't spend a moment regretting the treatments you have tried! How could you ever have accepted surgery without trying all the medications? You made the right decisions in attempting the treatments, just as the decision for surgery to take her to remission will be the right one to make now.

Angie and Mary, it may be difficult for them at the beginning but they will adjust. I know I once wrote that I was in hospitals for weeks, months when I was 5-7 years old and couldn't walk at all. Tons of treatments, leg casts for weeks, I must have missed at least a year of school, etc. (no surgery but, pretty much all else - even a bone biopsy done with only local, while I was awake :eek: The anethesia didn't take! :eek: :eek:), and truly I do not have memories of an unhappy childhood. It was what it was... it's obviously the good memories that stick! :) And my mom is a big part of those memories - she was always there and, even at that age, I think I knew that she was always looking after my best interests - medically, emotionally, etc.!

So, just hang in there, you guys are amazing moms! :ghug:
 
Angie -- I know I am new to the forum but I feel like I am getting to know so many stories and none touch me more than yours and little Izzy's. My hear goes out to you both. I concur with Tess. I read what you said earlier about wasting time on meds. But you definately did the right thing trying all of the classes of medicine first. Our children are so strong -- stronger than we are often. I can't help but believe that our children will be stronger and more compassionate and will go on to do amazing things in their lives because they have learned to deal with so much at a young age. Again, my heart goes out to you guys. Big hugs.
 
Thanks all...
Having trouble finding a great hospital covered by our insurance...can't figure out what to do about it.
I am adamant about getting her into one of the best...if she has to have this done I want it done by people that do it daily.
I can't figure out what to do, other than calling the insurance company and begging or seeing if there is a loophole where I can switch policies (we have an HMO...the docs would be covered if I switched to PPO).
@Mary-she feels OK other than the pain, which is occasional. She is nauseated, though, and I am afraid if I further restrict her diet she'll just not eat (we are struggling with weight loss). I was going to do gf a few months back...it is super overwhelming but I have heard people feel much better after making the switch.
@Tess, Shansmom, and Dusty-thanks <3
 
I wish I was able to help you navigate the insurance system Angie. :hug:

I totally understand your need to find the best, as no doubt we all do. Good luck hun, I hope something is able to be sorted for you.

Thinking of you, :heart:
Dusty. xxxxxxxx
 
Sorry to hear about the surgery although I'm sure it will be worth it in the end! Good luck I wish your little one all the best and warm thoughts to you having to help her through it.
 
Do you have Izzi on any kind of state aid? Idk how your state works that out. Here in Michigan we have children's special health care. This is what Rowan has as a secondary insurance. Just was curious. Bc it covers everything IBD related that my blue cross doesn't cover. (and thank goodness for it bc her last stay was $44,000 and that was just U of M for 9 days didn't even get the one before the transfer for 22 days at the other hospital) But we do have a PPO and the hospital must be in the list. Not that you would want to travel out of state any further than you have to.

But...http://health.usnews.com/best-hospi...spital_name=Hospital+name&service_offered=All

What about Saint Judes? I see commercials all they time. No family refused, no bills associated with it. Idk their experience in gastroenterology surgery though.

Can you use referrals to get her through a loop hole in your HMO?
 
We make too much to qualify for any aid in NY state.
(I was JUST complaining about this...I can't write off her medical expenses (we didn't "plan" for her to get crohn's and didn't take enough out in our flexible spending account) but I can write off the cost of my uniforms for work...stupid IRS *grumble* lol!)

I called the insurance company today...I asked about it and I was told that BECAUSE there aren't any hospitals on the list that are acceptable (according to her doc) he can file for an exception...so maybe we *can* go back to Boston *YAY*! I was terrified I'd have to keep her well enough until I could switch policies at the end of the year (or have a shotgun wedding with some bloke from the bar ;))
 
Good luck Angie! I hope the insurance comes to the party...:goodluck:

Fingers, toes and everything else crossed!

Dusty. xxx
 
Wow our state aid doesn't have a top out. I would ask someone. We just pay more for it if you make more. Gives a breakdown up to $136,000 a year with no ceiling. Yes, if we made that much or more we would have to pay almost $3000 a year for it, but still would be worth it for us bc it covers everything our primary doesn't cover and then the is deductibles and stuff too it covers. We would never qualify for normal aid in a million years, but bc Rowan has UC we qualify. I would talk to a social worker at the hospital and double check. The hospital did not offer it to us until Rowan was hospitalized for 10 days. but if your going to do the colectomy it is a guaranteed 8 days for the first surgery and another 3 for the reconnect. We got a bill from the 10 day stay from the last hospitalization and it was $44,000, with no surgery.

My husband makes $68,000 a year (and our economy is in the crapper.... More than ANYONE) and we pay $372 a year for it. Not trying to be pushy I just wanted to make sure you looked into it bc I know under normal circumstances she would NEVER qualify for anything. Not that we needed it until now.
 
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I found it... Your cap is for a family of 3 $73,240. That is crap. Sorry. That sucks. I can't believe it. BUT You wouldn't take both you and your exs into consideration. Since your divorced. That is a modest salary in Michigan but I know everything costs more in NY. I am shocked... Completely.:thumbdown:
 
Thanks for checking for me (and not pushy at all) :) I looked into it last year when the bills started coming... we are legally married (I wasn't working ft until recently and he has better insurance coverage) his ft slaary and my per diem work were over that cap anyway. Its ok...we could be far worse off...at least we both have good jobs and health insurance (despite our hmo not covering thehospitals I want to it is relatively inexpensive and covers most of our needs otherwise). I am slightly concerned about the time off for her surgery...I work 7 on 7 off but will probably need at least 3 weeks off (if not more) and I don't get paid time off. I will probably try to make sure the bills are paid and put some money aside to get usthrough..her dads salary used to supportus both so we should be ok :)
 
My boyfriend (our Boston doc) is no longer with the group :cry::cry::cry::cry::cry:
Just bear with me as I mourn...:yfrown:
He *is* supposed to call me to discuss her case though...at least I get to talk to him :wub:
;)
 
Found a list of top rated surgeons in Boston to send to my doc...we can try, right?! ;) Also looking in to the Yawkey Inn for lodging. I can't imagine how much a hotel will cost if we can't get approved...and I am going to be off work for at least a few weeks (I work a special shift so don't earn paid time off).

Izz is worse since starting the Vancomycin...and I don't think the levsin has had time to work yet. Her doc sounds pretty bummed about it...I think he was convinced she had an infection on top of the disease. I forgot to ask about her stool culture...darn!
 
Ughh ~ I hate to hear that yet another med isn't helping Izz :(

I hope she/you gets the best of the best in the surgery department ! She deserves nothing less !
Big Hugs and hang in there !
Btw ~ I truly admire your positiveness throughout all of this ! You're pretty amazing ! :)
 
Ditto to what Crohn's Mom says.

Have you considered Yale or Ct Children's Hospital? Although I can't testify to their boyfriend worthiness...If you can get in to Yale, I live half hour away and have an unoccupied fully furnished apartment attached to my house you could stay in...just a thought.
 
Omg you are too sweet! Boston childrens and chop are two of the top rated childrens hospitals-because we have already been to boston for a second opinion it is high on my list.
I don't mean to sound like I am complaining...her dad and I, although not togehter, both have good jobs. Just a hotel room for a week at a reduced hospital rate is close to 1500, though. Our jobs aren't *that* good lol!
Her doc is pushing to get her into a great surgeon. I guess they do the surgery locally but he wouldn't keep us here. Love him!
 
Makes sense. Everyone here runs to Boston also. I am hoping we never have to.

I didn't think you were complaining at all. Just thought if you find yourself in the hood why have to add that extra expense if you don't have to. Plus an apartment is more comfortable than a hotel.

I will keep my fingers crossed that you get the right surgeon and all the necessary approvals.
 
^^^True...much more comfy.
The Yawkey is an old historic home beautifully renovated by volunteers for families of patients at Childrens. It has common living areas and separate bedrooms and is $30/night if you qualify and there is a room available. There is a video on their website with pics of the reno...I am so touched by the things people do for strangers.
 
So sorry to hear about all that you and Izzi are facing. As I read your posts I am inspired by your approach to what must be a very hard road to face. I have so much admiration for the way you are advocating for your daughter and collecting information for the future. Izzi sure is lucky to have you in her corner! I wish you both all the best and hope that everything goes smoothly.
 
Being paediatric wouldn't you be allowed to stay in the hospital room with Izzi?

Dusty. xxx
 
FOr the initial consult she won't be hospitalized (I am assuming it will not all happen in the same visit), and her dad and brother will come along for the surgery. In the past when she has been hospitalized I room in with her and her dad and brother stay at home. (Home is 5-6 hours away...I couldn't leave my son for 1-2 weeks and her dad wants to be with her for surgery)
 
Oh, I see. I hope you can find something that is close and reasonably priced...:hug:

Good luck!

Dusty. xxx
 
I missed a few days Angie:( I'm sorry Izzi's having to go down this road but after reading so many success stories on here about stomas, I'm hopeful she'll feel so great there won't be any negative reaction from her. Good luck with finding that surgeon and the cheap room!
 
Today reinforced that we need to do something soon. Izz is on spring break...we went to the zoo. We were there 2.5 hours and visited the bathroom 5 times, plus had to stop once on the 30 minute drive home AND had to rush in as soon as we got here to go. She complained of pain for half of the time we were there (I pushed them in a double stroller...we never would have seen half of what we did without it).
Her c-diff is neg...we let her stop the vanco as taking it was making her vomit 4 x a day and (she claims) making her belly hurt.
Can't wait to get things moving here and get her feeling better!
 
Hope she gets the surgery date soon.

For the secondary insurance, do they adjust for the medical expenses in your state? We were above the allowable income, but when our medical expenses were factored in we did qualify.
 
Hmmm...not sure Zoodles...but even before I went back to work FT in Nov, we made too much (her dad and I are legally still married, although we have been apart 2 years). I doubt it would help.

We are back on PRED :( in an effort to curb her weight loss (4# in 2 weeks). She was in the bathroom 16 times so far today and has a crazy rash. She had a birthday party today and sat on my lap for most of it while her friends danced and played.

Plus her brother has pneumonia. I took him to the doc for a cough that wouldn't go away after WEEKS. Bad momma!!! Poor kiddo!

Still haven't heard re:insurance approval, although my boyfriend *ahem* I mean our old doc from Boston called while I was working...he is supposed to call back tomorrow. <3
 
IF she has anything else going on like speech therapy etc..then you can qualify for medicaid through most states "loopholes" regardless of income.

Good luck.
 
I just wanted to say that I am thinking of you all.

This is such a hard time. But I belive better times are round the corner.
Take care of yourselves,
LilyRose
 
Hope the pred helps some now. Sorry your son has pneumonia - hopefully he will respond quickly. (You made me lol with your post .. "ahem". Thanks. I think we need a LOL button near Thanks for you, Dex and Dusty ... and imaboveitall and her poop :) )
 
*sob* at sitting on your lap while friends played...with V a shut in for five months I know that feeling...:frown:

She's such a beauty.

Just some hugs :Karl: and love...
 
Still worried...she vomited up the little I got her to eat for breakfast, plus she was in the bathroom hourly last night and is bleeding again....I think I am going to suck it up and let him admit her for fluids, IV steroids, and possibly a new ng tube. :( Awaiting calls from a couple of docs to help me make my decision.
 
So sorry to hear she is not feeling well. Hope she starts to feel better soon. That beautiful girl of yours needs a break from feeling yukky and to be able to play and have fun like most little girls. Sending good thoughts your way
 
Angie, I wish Izzi was doing a bit better :ghug: I know you prefer her at home but maybe she will feel better if she can get some meds, liquids, nutrition at the hospital for just a few days. And, knowing she's getting what she needs may lessen some of your worry as well. Hoping she feels better soon!!! :Karl:

And, I hope your son's feeling better soon too. You sure do have a lot on your hands right now. :( Keeping you all in my thoughts!
 
SO Izz and I hit the dentist today (overdue for our 6 month cleaning-bad momma-again!). She lost her first tooth-YAY! and I somehow spent an hour in the chair for them to evaluate how good of a cleaning I need the next time i go-WTF!!?!?? Like I have time for 2 friggin visits!
I am so stressed out today I dusted off my gin bottle and took a shot (Tim (her dad) is driving to the hospital-thank goodness we get along so well). Now if only the inebriated tooth fairy doesn't forget tonight! :0
 
I have seen our doc 5 times since we got here at 3...he is trolling the place still at 11:30 (handy as it kept izz off the monitor despite orders, got the meds I needed ordered, and he has answered most of my questions and provided a few more. He brought up cgd (chronic granulomatous disease), for which she would be an odd fit. He still can't help thinking somethingin addition to crohns could be at play. He brought up tacrolimus again, saying he could consult with childrens to administerit while we wait for our consult. I asked if he had a chance to research ldn yet and he hasn't. I left her ewntire file at home :banghead: but will see if tim can get it for me tomorrow.
I appreciate that he stopped by (I thought he had forgotten) but now my mind is reweling with new info and I can't sleep.
Izz lost her first tooth today and her nurse left a note on thewindow for staff to remind me. When I went to retrieve it there were donations taped to it...so sweet! Her doc chipped in too :)
 
Hang in there Angie! I'd imagine most of your sleep lately is the drop from exhaustion type.
 
i enjoyed your last post, Angie :) Sounds like she is in good hands there, that doc sounds like a gem, what doc comes by that many times, is still thinking of alternate dx...he may be a Saint too.

Love to you both :heart:
 
Her doc has already been by this am- I swear he didn't sleep! He asked infectious disease to check on us in case he is missing something and has called both boston and.chop this am. ID residents have already been by, and the attending will be around "later".
Izz is doing pretty well-the iv fluids helped and she is looking better :) thanks for all of the love!!
 
ID fellow stopped by-will be doing a blood test in the am for cgd. He said it is a pretty rare disorder (even more so for females) but because of the severity of her anticipated treatment he would be happy to rule out any and all disorders.
 
So fab to hear that Izzi is looking better! And so fab to hear that you are being so well looked after! :panda:

Oh Angie, sends you loads of love and healing thoughts hun...:Karl:

Dusty. xxx
 
Oh, excellent, it sounds like little dollface has a great med team willing to look at obscure things...awesome for sure.
I think you def did the right thing by going inpatient.
 
So an ezciting day for us (in a way-twisted I guess). Probable release tomorrow-her doc was happy to get some I & o on her and daily weigh ins. She has only had clear liquids but hasn't vomited. Our old doc called...YIPPEE!
He agrees...while he said that taacro works well in many kids it is a short cterm bridge-it getsthem healthy enough to be able to plan elective surgery which will likely result in a better outcome. He is calling his old asst to try to get us in for gi within the next couple of weeks with a gi he rwcommends.
 
Omg, mark-my phone kills me! I am glad that you recogize that it is my phone and not my ignorance. And outrageous grammatical/spelling errors. It likes to insert periods in the middle of most of my sentences also...wanted to keep things from getting boring around here! ;)
 
We are home!
I apologize for the rambling and unfocused posts!
Izz is feeling the same. She was having less pain in the hospital (due to being on clear liquids), but stooling just as frequently. SHe hasn't been nauseated since admission, though, nor has she vomited. :)
We are otherwise in a holding pattern.
 
So fab to hear you are home Angie. :) I hope all is continuing to go okay...:hug:

Dusty. xxx
 
We got a tentative date of 5/7 for Boston (it is my week to work but if it can't easily be adjusted I will figure out how to switch).
Izz made it to school today but I had to take her brother to the pediatrician (30 minute drive) and we had to stop at seedy restrooms on the way there AND the way back. I can't wait to get her seen!
Her dad may drop in here...he needs some support and I keep trying to tell him you all are my sanity!! :))
 
[QUOTEHer dad may drop in here...he needs some support and I keep trying to tell him you all are my sanity!! :))[/QUOTE]

I agree. We need each other, Moms and Dads!! Like the post I just read on this whole think affecting our weight...It really helps to listen to each other and know that we're all in this together. And NO ONE understands like other crohn's parents. I have to check in here for my sanity too.
 
Congrats on a tentative date. When will you know about availability at the Yawkee Inn? Would be sweet to be able to stay there. Boston is a great city but expensive... Pretty sure there is a T stop (mass transit) right by the hospital. Often much easier/quicker to take the T than drive and park in the city if you end up staying somewhere else instead.
 
The Yawkee can only be reserved 48 hours in advance for stays less than 4 days...so not for a bit. The t stop is a few blocks away, although after three days there last year we never *did* figure out which train to get on to get back to our room (our last day there we walked 3 miles...in the wrong direction lol!)I think our rooms were close to $200/night at the reduced hospital rate-but nice as we stayed 1 block from the hospital. Izz is looking forward to returning. :)
 
Three mile walk...hope it was a nice day. Pretty sure it is on the green line and you are right that is the most complicated one, easy to get confused there. Lived near the green line for a year and was always a little hesitant about getting on the right one. Grew up south of the city and the red line was easy to navigate to get into the city. Hope you get lucky with the Yawkee.
 
It *was*...thank goodness! We only got stuck in the rain once, and thank goodness for friendly Bostonians who offered to help us multiple times!
We are confirmed for the 7th, GI and surgery consults. Insurance paperwork was faxed today.
We are d/c ing Humira as of today and beginning Tacrolimus and Bactrum when I get off work and get the kids ft Thursday. (cracks me up that our GI offered this up before I mentioned it-he wants regularity with dosing and blood tests and will wait until it is my week to start her because of it so he can get better result reports:) )
Izzi had a WONDERFUL day Monday. She was fun and sunny, happy-my old child back. I had forgotten how much this disease had taken away from us until I saw her yesterday. I am not sure what caused it-she is unhappy again today-but she also had an increased appetite over the weekend.

I "met" another local mom (30 minutes away) over the phone this week-her dd is 8 with CD, diagnosed 2 mos before Izz, we go to the same office and both visited Boston for second opinions (funny because there are other options...New York and Philly are also "nearby"). It was great to chat with her over the phone and I look forward to getting our girls together before Izzi's surgery; I guess her dd is pretty vocal about her stoma and will show it off readily. I am grateful to the nurse at the hospital (who was just "covering"; not even our nurse) who offered to pass along my info to another mom <3.

As Dusty would say, onward and upwards!!
 
Good luck Ang, I hope everything runs smoothly from the consult to the meds to the room! :) I think it'll be great for Izzi to meet a new friend who can share her experience. :Karl:
 
Oh Ang ~ I'm so glad to hear the Izz is going to get to meet someone just like her !! I can tell you that's all Gab ever wanted when she had her ileostomy ~ she just wanted to feel like she wasn't the only one. She never got to "meet" anyone; she did however get to "see and hear" someone when we attended the CCFA's Take Steps Walk last year. It was one of the ladies who was speaking at the event. Oh if I could have taken a picture of her face the moment the lady said she had an ileostomy...You could see Gab's emotions all over her face. She didn't feel "alone" anymore.
Izz may not feel this same way right away because she hasn't had her surgery yet, but most likely the moment she realizes and remembers, she will. Hopefully, you can meet up again after the surgery if all goes well the first time. :) I just think it's so wonderful that Izz gets this opportunity ~ take it from this previous ostomy momma ~ its a wonderful thing !! :)
Awe....I wish you all nothing but the best on the 7th !! You both deserve so much happiness and relief from pain! :kiss:
 
All IBD kids are different of course. But I found that Rowan got a lot better when we took her off all the drugs and just was using the predisone and OTC meds.. I hope this happens for Izzi. It seemed like all the drugs had one thing in common...The side effect of rectal bleeding and Rowan was always in that 10% that had that rare side effect. I really think she is going to do great with her ostomy. I know it is hard to explain and even harder to imagine. It was all pretty scary the first couple days but she will get over it once she realizes it makes her able to have fun again. To never have to stop bc of the pain. Rowan is like the energizer bunny now. Hasn't been this way in 6 months. Your almost to the end of the race and your doing great.
 
They will probably tell you they want her to be 6 weeks off the Humira before surgery. It becomes a much safer surgery if she is not on pred and Humira. That is what the surgeons required for Rowan and she was one in need of frequent blood transfusions. I would assume the same and I would have that question ready bc there is more of a risk for infection.
 
Well, I called our docs office yesterday to see if I could get the scripts and get going. They were wondering if she needed to be inpt to begin Tacro and were waiting for a callback from Boston. I emailed Dr. Essers and he got right back to me...he will call them this am to explain it better to them. This is why he is my boyfriend :heart:

Also, a big kudos to my MIL who is taking both kids (along with a couple of my nieces) for a sleepover tonight.

She works full time, sells candles that my FIL makes on the weekends, brought dinner over last night, and still has time/energy to have my getting up all night daughter over to play. :heart:

This is something my parents (currently both unemployed) are not sure they are willing to do right now, so I am super appreciative of my mil!
 
Yay for Dr Wonderful! :wub:

Oh wow, your MIL sounds fab! Enjoy your alone time hun, it is so very deserved...:hug:

Dusty. xxx
 
Listen to Mary speaking like a pro already. I have no doubt you will be doing the same in no time. Sounds like you have a lot of angels looking out for you. I continue to pray every day for Rowan, Izzi and your families..you are in the home stretch hang in there!
 
Lol by no means am I a pro. They had to pound the 6 weeks thing into my head cuz I wanted her pain gone. Then I was kinda bummed bc she was the happiest and healthiest I have saw her in months. Knowing I was taking her to the hospital and she would feel like she were hit by a truck and I did it. But that wasn't the outcome. Trying to get in front of the hindsight and of course I didn't think she would be playing after a day of surgery. Kids are amazing. ;)
 
Checking in on Dollface and happy to hear you have a date for sx! Sweet. :thumleft:
Looking forward to reading another success story like Little Rowan's...two stars on here...:medal1::medal1: Rowan and Izzi
Much love.
 
My "sweet dollface" is miserable lately (you calling her that makes me lol some days J). Cranky and rude...but a lot on her mind.

We start Tacro Sunday, get bloodwork Monday, and start Bactrim Wednesday.
I have to drive 45 minutes to get it tomorrow...some days I hate living in a smaller community- but I am thankful we can get it and get her started. :)
So 6 am meds plus a supplement (still haven't worked her 3 other supplements back in), 2 mid day and 6 pm meds. No *wonder she's cranky! She's pretty stoked about no more Humi shots...although she got nervous when she saw me get mine out today lol! She wouldn't even face me while I was giving it!
 
OH goodness...a little PTSD ?! LOL

Poor Izz... I think she gets a cranky pass here and there :)
And you too momma ! At least you can settle your cranky with a nice glass of wine if needed :)

big squishy hugs for you both!
 
Awww...thanks, all.
Very true...psoriasis and IBS here...nothing like IBD, just annoying :)
Just got off the phone with her doc again...I can't figure out if he is a bit anxious about Tacro (he has had other [transplant] pts on it) or what but he just called (for the third time today) to remind me to page him if I need something this weekend and let him know if I have any trouble picking up her meds tomorrow. Love getting the reassurance and I am grateful for the support...he told me to get off of the computer and stop researching tonight so I will sign off :) I have a race to run in the am!
 
Did well in my 5k...my best race time ever!
Started Tacro yesterday..need to get bloodwork today. Doc told me "after third dose" but everything I am reading says to wait until just before the fourth dose-to get the "trough" reading of Tacro in the blood. Called to confirm this info but haven't heard back yet.
She is the same...up all night (in bed from 7:30p-9a last night) and complaining of twice as much belly pain as usual. SHe does seem to have more energy when she *is* awake though...pred maybe?
 
Well done for the 5K - I managed to drag myself to the school and back today :lol:
Sorry to hear she isn't great just now, not too long till the surgery though. Your doc sounds great!
 
So we met our new boston gi and surgeon yesterday-they are both super nice. The gi didn't have much to add, but the surgeon talked with us for a while. We have some leeway in choosing a date because of the tacrolimus, so we will probably give it a few months so that I can take more time off work.
It never mattered much if she had crohns or uc (she had a cecal granuloma-her only sigh of crohns). However, her surgical outcome varies depending on diagnosis. Her surgeon tells us it would be a. Three part surgery- remove the colon, leaving the rectum. Let her heal, dc some meds, and seehow shedoes. He tells me even if she *is* a candidate for a j pouch, she may be young (maturity, not age/size) as while he has no problem doing the surgery, it requires regular digital rectal exams and daily dilator insertions. So when the time comes we will have more decisions to make.
We had a crazy long dday yesterday (ended up being late for our apppt and I wasn't abble to. Sleep) so we decided to go straight home today.
 
Thanks for the update Angie. So fab to hear the docs are nice and that you have some breathing space! Yay!

Dusty. xxx
 
It sounds like the apptmt went well! :) And am glad you liked the GI and surgeon!

I hope Izzi continues to feel better on the Tacro so you have time to prepare. :ghug:
 
Glad you like the docs and have some time so you can breathe a little easier. Man, you have the patience of a saint. Waiting more would kill me and all the decisions you have ahead of you...you are an incredibly strong mamma! Hope you got your much deserved rest and hoping things stay good until surgery.
 
Crohnsinc, I would prefer to do it sooner...but my fmla request was denied because I didn't work enough hours last year. I have to hit 1250 before I qualify, and without it they can fire me for taking more than a week off (I work a special shift and don't accumulate pto). I am working as much as I am allowed to get the hours faster (it would also be nice to get the surgery done beforeshe starts school in the fall, but jobs are hard to come by in my field right now, and I'd rather not lose mine, although I will if I have to).
 
My best to both of you. You will do great! I pray you can reconnect and its UC, but regardless; once the pain is gone you and izzi will feel much relief. How much pred is she taking now? Did they have you stop the Tarco for surgery, if not are they planning to? I imagine it makes the surgery more complicated with the Pred and Tarco. Or no?
 
Mary, she is on 10mg twice a day, although we are looking at dcing it as it isn't doing much, if any-thing. We will stay on the Tacro until after surgery. He was concerned that she was steroid dependent for sure. although I don't believe she qualifies as "dependent" when it doesn't help loL!

I am fairly ambivalent about reconnecting- the j pouch is quite a bit of work. Our surgeon tells me she may end up with as few as 5-6 bms a day eventually anyway, after about a year, plus the possibility of leakage. (Aren't we dealing with that now???!) Plus digital rectal exams and daily dilation. I feel that we will start with the first surgery, try to dc meds, and see how she does. (Her surgeon says he will do a colectomy, leaving the rectum intact. If possible, a second surgery would involve removing the rectal mucosa and creating the ileoanal reservoir, and a third surgery would take down the ostomy and reconnect.)
At the very least I wonder if she would be better off being a bit older/able to deal with rectal examinations and help to make the decision (ie: I want to use the restroom normally and realize this requires digital rectal exams/dilation)
I inquired about the trio of blood tests to differentiate between Crohn's colitis and UC (the single granuloma found on her first scope was not reproduced during her second scope and visually she is UC-like), but her surgeon says it is inaccurate...I would like to see if our regular GI will pull them with her next draw anyway, as now my curiosity is piqued.
@crohnsinct :ghug: ty!

Love our GI...she called me back about 2 hours after I left a message for her-and the surgeon, who called me the CEO to Izz's dad lol! Appreciate that he acknowledges my type A personality and can laugh about it.

So we are in a holding pattern for now!
 
Is the digital dilation bc of it being a 3 part surgery? Rowan doesn't have that on the agenda. We do have to do a MRI with contrast to check for leaks with the pouch but they never mentioned this dilation to me. Now you gave me a new question for Rowans surgeon. They said it was a pretty quick surgery to take it down. Hmm... You got my fingers tapping.

You should have more of a clear diagnosis after the first surgery with the pathology of the colon. I wonder why they keep the mucosa in tacked? I would be worried that it would keep getting inflamed. Time to google. Is that not where her disease is? I know the whole colon but was it always present in the rectum? I believe, (anyone correct me if I am wrong) with UC it always begins and is the most severe in the rectum??!
 

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