# Just realized it has been 7.5 years since diagnosis!



## kimmidwife

Holy cow!
I just realized we have been fighting Crohn's with my oldest daughter for 7.5 years! This forum has been amazing. Without you guys I don't think I would have made it through! Love you all!!!!!
   In all this time my girl has never really achieved complete remission. The closest we came was the two years on low dose naltrexone during which she had very limited pain and her disease was the least active on biopsy.
I am hoping we are close again with entyvio though her pain is bad again right now. Her next infusion is Tuesday.
Now we begin the fight for my second daughter. If her medication ever gets here! It was supposed to arrive last week and still hasn't.
We need a cure for this darn disease!!!!
#ihatecrohns!!!


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## Maya142

I'm so sad that she hasn't ever been in remission. I hope the Entyvio helps her pain - poor kiddo .

How is your little one feeling?


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## pdx

Really hope the Entyvio is the medicine that finally works for your daughter. And that your younger daughter finds a quicker path to remission. (And yes, my dream is for a cure!)


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## kimmidwife

Maya,
She is doing okay right now.


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## CarolinAlaska

I'm sorry that your girls have to suffer thru this, Kim, and after so long...


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## ronroush7

I am sorry your daughters are suffering.  You are right.  We need a cure for this disease.


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## Tesscorm

Lots of hugs Kim!  I hope your younger one is able to reach remission quickly and, really hope entyvio will finally bring Caitlyn to remission and some deserved relief from crohns!!

:ghug:


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## buchanaj

So sorry both of your kiddos have to deal with this dreadful disease!!

Hopefully 2016 will be the year of the cure!!


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## Mehita

Our kids must have been dx'd around the same time. Seems like yesterday some days, but also like we've been fighting this forever too.

I hope 2016 is her year!


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## ronroush7

I hope 2016 is better


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## Sascot

Wow, can't believe it's been that long! Here's hoping for a good 2016 for both girls


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## kimmidwife

Caitlyn's pain has not improved this time after the entyvio. We have an appt with the doctor for Monday. We may be looking at surgery to try to get rid of the area around the anastomoses that won't heal up but I am worried that it is just going to keep reoccur I f in that same area when they reattach again.


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## ronroush7

Hoping for the best.


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## Sascot

Really sorry to hear that, very frustrating if they can't guarantee the surgery would fix it.


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## kimmidwife

Caitlyn is not doing well and I realized this morning her appt is tomorrow not today. (Good thing I always check the calendar first thing in the morning.) she is having worse and worse pain and having blood in her stools again.


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## SUNIT

Really sorry to hear that but hopefully she is doing otherwise fine....


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## Madhu

Amen to that. We definitely need a cure soon. Hugs to you and your girls. I hope this year is awesome for you guys!!


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## ronroush7

kimmidwife said:


> Caitlyn is not doing well and I realized this morning her appt is tomorrow not today. (Good thing I always check the calendar first thing in the morning.) she is having worse and worse pain and having blood in her stools again.


I hope everyone is doing fine soon.


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## Optimistic

I hope tomorrow comes fast and Drs have some new options tomorrow.


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## Maya142

Will be thinking of you guys :ghug:.


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## Tesscorm

I hope you get some answers or direction tomorrow! :ghug:


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## Sascot

Sorry to hear that. Hope they can help her tomorrow!


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## kimmidwife

Thanks everyone. Appt is at 1pm and we have to drop a stool for a fecal calp. this morning. Our doctor wants to see how her numbers are trending to see if the entyvio is helping at all.


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## kimmidwife

The doctor thinks maybe Caitlyn has Cdiff again. He wants to get a culture and fro her to start a medicine called Alinia. It is similar to flagyl but supposedly with less side effects. He also wants her to try Donnatal again. She is also having some back pain in the area they saw the kidney stone so he wants her to have an US. I think that is everything.


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## ronroush7

kimmidwife said:


> The doctor thinks maybe Caitlyn has Cdiff again. He wants to get a culture and fro her to start a medicine called Alinia. It is similar to flagyl but supposedly with less side effects. He also wants her to try Donnatal again. She is also having some back pain in the area they saw the kidney stone so he wants her to have an US. I think that is everything.


Best to jer


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## CarolinAlaska

kimmidwife said:


> The doctor thinks maybe Caitlyn has Cdiff again. He wants to get a culture and fro her to start a medicine called Alinia. It is similar to flagyl but supposedly with less side effects. He also wants her to try Donnatal again. She is also having some back pain in the area they saw the kidney stone so he wants her to have an US. I think that is everything.


I hope the new antibiotic works.


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## kimmidwife

Thanks guys. Tomorrow we see the new neurologist. Hoping maybe he has some good ideas about her pain since her doctor thinks at least some of it is neuropathic pain of the GI tract. I have heard really nice things about this doctor fingers are triple crossed.


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## kimmidwife

We just saw the new neurologist. He was very nice. Caitlyn's neuropathies in her feet and hands have actually improved since we saw the pain management doctor who discovered them last May. He said adding the B complex and Folic acid seems to have helped.
For her neuropathic stomach pain he wants her to try Lyrica.
I am wondering if anyone else's kids have tried Lyrica and what their experience was?


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## Maya142

M has been on Lyrica for the last two months. Unfortunately, it hasn't really helped with pain. The only side effect she had was drowsiness during the day, and once we reduced her dose in the morning, that went away.

Hope Caitlyn does well on it - good luck!


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## Catherine

Has anyone tried Capsaicin, it an ointment?


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## kimmidwife

We figured out one possible case of Caitlyn's pain, Cdiff is back again. The doctor called and said the lab called him and said her Cdiff came back positive again. I am not at all surprised. He called in Vanco but the pharmacy so t have it until tomorrow.


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## CarolinAlaska

Ugh!  I'm sorry to hear it!


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## Maya142

Oh no, no wonder she is miserable! I hope Vancomycin kicks in quickly and Caitlyn feels better SOON!


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## my little penguin

Hugs
On the CDiff


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## pdx

Not again!  So frustrating.  Hope she feels better soon.


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## crohnsinct

ugh!  Poor Caitlyn!  How many times has she had cliff now?  At what point do they consider fecal transplant?


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## kimmidwife

Cic,
This is only her second time. I am at least glad that we have an answer for this pain and am hoping the Entyivo is working for the actual crohns.


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## crohnsinct

kimmidwife said:


> Cic,
> I am at least glad that we have an answer for this pain and am hoping the Entyivo is working for the actual crohns.


True dat!  Me to!


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## Sascot

Fingers crossed once she gets rid of the c diff things will get better!


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## kimmidwife

Caitlyn is having pain again. Why can't this poor girl catch a break? I am hoping it is from her being a weeks before entyvio.
On a happy note Caitlyn got to participate in the Miami Marathon. She raised $3000 for the camp she goes to, it is a special camp for kids with chronic illness and everyone who raised the money got to participate in a special weekend in Miami and then either ran or were pushed in a running wheelchair  for the whole or half marathon. Two of the country sellers took turns pushing Caitlyn for the half marathon. She ran for two of the miles though herself and we met her at the finish line. I will try to post a picture later. Then we all went back to the hotel and hung had an after party. It was really fun and nice to meet some of the other kids and their Mom's who I knew from Facebook but had never met before. There are two other kids with Crohn's and one with UC who we have spoken a lot with. One of the boys who has Crohn's ran the whole marathon. He is 17. We couldn't believe he did the whole thing, just amazing.


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## Optimistic

This made my day!

She is a very impressive young lady. I know you are proud. 

Oh how I want her to get beyond all this pain!


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## CarolinAlaska

That's really neat.  I think that kind of camp sounds great, especially since the Camp Oasis didn't work out well this year (she had a small sleep seizure two nights in a row and so they said she was too complicated for them).  Sounds like the marathon was a success!

I'm sorry about the pain returning.  That sucks! :voodoo:


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## pdx

That's great that she was able to participate in the marathon (and that she raised so much money for her camp!).  Sorry that she's in pain now though--hope the entyvio helps.


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## Sascot

Fantastic raising that money and completing the marathon. Sounds like a good day. Hope she feels better once she gets the Entvyio


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## kimmidwife

I called Caitlyn's doctor and spoke with them because I remembered when she has Cdiff last time they held the entyvio. The nurse told me no as long as she has been on the antibiotics for ten days it is fine. Two hours later her doctor calls, firstly he asks if anyone to,d us Caitlyn had Cdiff. I told him yes his partner called last Sunday and to,d us and called the scrip in. Then he says no she can not have the entyvio until she tests negative for Cdiff. we have to go to the lab on Friday for her to be rechecked. Don't you love how the nurse gives you totally the wrong information? I love her doctor but I don't like their set up for getting messages to the doctor and how normally the doctor never calls you back. They need a better system.


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## CarolinAlaska

Well, your doctor did call you back.  Most of the time no one calls me back unless I'm really losing it.  My doc in AK always called me back personally.  She was the best peds GI ever!  I hate it when the receptionist gives me medical advice, like today.  I feel like she isn't taking my concern seriously and that she probably won't pass my message on.


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## kimmidwife

Carolin,
I so agree with this. I also don't know if his nurses are real nurses or just medical techs. If they are med techs they really should not be giving advice.


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## Tesscorm

I never 'call' the GI or his office with a medical question - I always email.  It allows me to list all symptoms and my concerns and, as my question(s) are passed on, there's no miscommunication between me - staff - GI.  I know most of the time (if not all the time), our GI's assistant directly forwards my email to GI and then she forwards his reply to me. 

If it's possible, check if your GI's offices will communicate using email.  I think people are generally less likely to give an 'off the cuff' response if they are responding in writing???

:ghug:


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## Madhu

I agree with Tesscorm. Infact, our GI allows us to email him directly. And he responds as soon as he can.


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## crohnsinct

We email also!


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## kimmidwife

Unfortuantely our GI office does not offer this. I wish they did.


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## my little penguin

Portal for results and questions here as well

Nurses forward responses back ..... Most of the time


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## CarolinAlaska

We have no electronic options at our GI's office.  They never called back either, like I suspected.


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## kimmidwife

Caitlyn was of course not able to go until tonight. Ugh! I don't k ow if we can find an open lab tomorrow which means we won't get it in until Monday and then the resukts may not be back in time for Tuesday.


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## kimmidwife

Back to the GI again for worsening pain. We never make it out to the six week follow up. 
Her fecal calp came back at 500. He wants  her to try a small dose of prednisone every day for four weeks and continue with the Entyvio.
Then we repeat the fecal calp in five weeks and see what the results are.


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## Tesscorm

OMG, you and she so much deserve a break! :ghug:  I hope the pred gets it under control and the entyvio can then manage it!  Just lots of hugs and wishes this works! :ghug:


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## pdx

I agree with Tess--you guys deserve a break!  Really hope the pred helps.


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## kimmidwife

Thanks. I really hope it works if not we may be looking at surgery to remove the area that won't heal.


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## Maya142

Sending hugs Kim. Poor Caitlyn - she really deserves a break. I hope you can avoid all the side effects of steroids (puffy face bothers my daughter the most) with the low dose.


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## Sascot

How frustrating for her! Hope the pred helps, she so deserves to be pain free


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## Mehita

Any updates?


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## kimmidwife

I think it might be helping. She has not complained of pain yet today and is full of energy.


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## Sascot

Great! Hope it stays that way.


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## kimmidwife

Talk about steroid mood swings! Cailtyn was mood swinging bad this morning!


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## kimmidwife

Caitlyn had her next entyvio yesterday. She is doing the low dose steroids every other day. She is still having a lot of pain after eating. She does her FC next week and we see the doctor the week after to figure things out. Hoping the results will be back by the appt. Her little sister has been complaint in a lot of stomach pain. Probably going to call the doc and see if we can get an FC for her as well before the upcoming appt.


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## Maya142

Any chance the pain after eating is her gastroparesis Kim? I know my daughter had a lot of pain after eating when her gastroparesis was diagnosed. Eating smaller meals (like 300 calories at a time) helped.

Hope the doctor has some ideas for both your girls :ghug:.


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## my little penguin

I was going to say the same .
GP definitely causes abdominal pain for ds.
If he doesn't take his GP meds things are much worse .
Maybe her gp meds have worn out and need fixed.


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## Sascot

Hope they can come up with something to help. Thinking of you


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## kimmidwife

Maya and MLP,
Since she started the entyvio Her GP has greatly improved thankfully. She is now classified as very mild. So I don't think the pain is from that. She seems to be doing better today, she hasn't complained so far. Fingers crossed!


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## kimmidwife

Tonight was poopy duty x2 for two daughters 2 fecal calp. 2 Cdiff, 2 stool cultures. I am pooped! Lol!
But really where is the wine when you need some?


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## Tesscorm

kimmidwife said:


> But really where is the wine when you need some?


I think CIC is hoarding it!!  :rof:   But, seriously...  Poor you!!   The true definition of being 'pooped out'!  :hug:


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## Sascot

How lovely! That must have been fun


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## kimmidwife

My girl is having terrible pain again. 
We see the doctor on Monday.


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## Maya142

Any progress on the pain rehab program Kim? Really sorry to hear Caitlyn is in a lot of pain again .


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## Sascot

Really sorry! Hugs


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## Farmwife

We're in the pain program as I type this.
Worth it if you can get her to one.

I hope she feels better soon.


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## kimmidwife

Maya,
I need to work on it. The issue is the timing we have a lot going on and Caitlyn doesn't want to take the time away to go right now. She is finishing up her senior year and then is supposed to work this summer for the first time. We are talking about her going after the summer depending on how she is doing.


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## kimmidwife

Latest update,
Just finished with all 3 of my girls at the GI  doctor. He spent almost 2 hours with us in the room. 
My youngest is doing really well on the Apriso thankfully. She actually grew 2 inches and gained 6 lbs since her last visit. 
My middle daughter he is pretty sure does not have IBD but does have this other diagnosis, congenital sucrose intestinal deficiency. We reviewed all her labs and biopsies again and he is pretty certain of this diagnosis.
Finally daughter number 3, my oldest daughter she continues to have severe pain especially after eating. (She is currently on entyvio, a low dose of prednisone every other day,  and budesonide.) He is baffled by her. She has tried everything under the sun for this pain nothing helps. On her last colonoscopy (beginning of October) it showed that the area where she had her surgery 5 years ago there is still active disease. He wants to do another colonoscopy again in 2 weeks and then possibly surgery.


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## kimmidwife

Forgot to say we are still waiting for both girls fecal calprotectin results. They were still pending today.


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## Mehita

How are you doing, momma? That's a lot of stuff going on. Are you taking breaks, taking care of you?


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## kimmidwife

Mehita,
I am trying. It is so hard.


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## pdx

So sorry that you have so much on your plate right now, Kim.  Hope that Caitlyn's doctor can figure out a way to treat her without surgery.


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## kimmidwife

Time to start the colonoscopy prep.


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## kimmidwife

Forgot to update,
Caitlyn's fecal calp is unchanged 572. She had a bone density done it showed borderline osteoporosis so her doctor wants her to see a nephrologist.
Caitlyn's little sister fecal calp came back 37 yay!!!!


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## my little penguin

Kimmidwife 
Why a kidney doc for her osteoporosis ??
Ds sees one but that is for his actual kidneys .

Good luck with the prep
Glad her sisters FC is down


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## kimmidwife

MLP,
I read that kidney docs are who you see when your body is not absorbing calcium. I was confused by it as well. I only spoke with the medical assistant about the results but when I see him tomorrow at the colonoscopy I will ask about it.


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## pdx

Hope the prep and scopes go well.  And great to hear that her sister's FC is down.


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## Sascot

Good luck with the prep! Good news on the FC of 37.


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## Maya142

My daughter has low bone density (osteopenia though not osteoporosis) and we were referred to a nutritionist. Interesting on the kidney doctor -- had never heard that before.

However, in her case, it seems like the osteopenia is a result of poor nutrition and inflammation in her joints. 

We will redo her Dexa scan in May and see if her bone density has changed now that she has gained weight and is on formula and is more active (somewhat anyway).

Very glad Caitlyn's sister's FC is down. Good luck with scopes!


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## kimmidwife

Today was a rough day. I am exhausted. The scopes went well but we found out Caitlyn has a severe stricture at the anastomoses where her previous surgery was. It is very inflamed and he could not get the scope through. He said the area was very friable and he wants her to see the surgeon ASAP to get this area resected. Because he couldn't really see very far with the scope after her scopes she went for a GI Barium series. We spent most of the day St the hospital. We have an appt with the surgeon for Wednesday and are hoping to do the surgery next week.


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## Optimistic

Kim, I am so sorry to hear this about Caitlyn. I'm sure you are shocked and frankly I would be angry also!
There really aren't any good words other than we are sending you and her lots of support, prayers, positive energy and hope.


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## pdx

I'm so sorry to hear this, Kim.  I really hope that the surgery goes well and that Caitlyn gets a long, long remission afterwards.  :ghug:


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## Maya142

Really sorry to hear today was so hard. I'm glad they have found the cause of her belly pain but sorry to hear she needs surgery again . Poor Caitlyn!!

I hope the surgeon can get you in quickly for the surgery.


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## Sascot

Sorry things didn't go great! Really hope the surgery makes a big difference for her pain levels. Thinking of you both.


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## Tesscorm

Ditto all above!!  I'm so sorry she's facing another surgery but am sending lots of hope and wishes that this is finally it!!  That she'll be able to come out of it feeling well and in remission for a long time!  She (and you) most certainly deserve it! :ghug:


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## kimmidwife

We are meeting with the surgeon today. Will update after.


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## kimmidwife

The meeting went really well.
The surgeons office staff was amazing. They write the kids name on the table paper in big fancy letters (Disney like) before the kids gets there. So nice!
We were really impressed with the surgeon she really seems to know her stuff.
She said the area she has to remove is not to big and she is going to try to do it laparoscopically. The surgery will be next week.


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## pdx

Glad you liked the surgeon, and I hope the surgery goes well.


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## Sascot

That's great you liked the surgeon, best of luck for the surgery!!


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## Tubes

Liking your surgeon is always great. Good luck with the surgery


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## kimmidwife

Sorry I did not update yesterday. I barely slept the night before and was so tired I just crashed.
The surgery went well. The surgeon said that she had a severe ulceration right past the stricture and as soon as she touched it it started bleeding and bleeding. She said thank goodness she had it removed when she did because another few days and she may have had a severe GI bleed or a rupture into her abdomen.
They did manage to do it laparoscopally Thankfully. She is having really severe pain though and I think it is partly trapped gas.
She wasn't able to urinated after the surgery and they finally put in a catheter last night and emptied three bags of urine it was not good and they only did it because we insisted after she sat and sat and couldn't go.
I was not pleased about that.
The pain team has been really good though and they are going to change her from dilaudid to morphine as soon as they can get a new pump to see if it helps more.
Meanwhile I am going to try to convince her to try and get up and walk a little bit.


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## my little penguin

Glad her surgery is done 
Hope she heals quickly and this reduces her pain


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## Maya142

Glad it's done and hope Caitlyn feels better SOON!!


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## kimmidwife

I convinced her to get out of bed and sit in the chair, Cause this Momma don't play! Lol!
We changed her into her own pajamas and I think she is felling a drop better.


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## pdx

Hoping for a fast recovery for her, and that the surgery gives her some relief from her pain.


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## Sascot

What a relief she had the surgery when she did then. Glad she is a tiny bit better, hope they get the pain under control so she can just concentrate on healing.


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## my little penguin

Your own pj makes a big difference


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## Clash

I don't know how I missed all this.

I'm glad the surgery went well. And I hope the pain improves quickly.

C's bladder slows with anesthesia and painot meds. We knew going into surgery. They wanted to remove the catheter shortly after surgery and C begged them not to. They did and ended up having to reinsert it. C was so pissed. It was the worst part of the whole process. Although, ativan made reinsertion mostly painless.

Hugs. Remember to take time to rest for yourself.


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## kimmidwife

Rant: what has happened to nursing care here in the USA?

I was very surprised the nurse did not encourage her more to get her moving. It really upset me.
Nursing seems so different now then when I was working the floor 20 years ago.
We always got our post op day1 patients out of bed at least to a chair. We would help them wash and change their clothes and then their beds. Then in the afternoon we would help them take a small walk in the hallway and we or the nursing assistant would walk with them.
It seems like the personal touch is really being lost from nursing. It is all about computers and charting charting charting.
It makes me so sad about what the nursing profession is becoming.
End rant.
Feeling better now.


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## my little penguin

Completely agree 
At kiddie hospitals the parents are expected to do 90% of it


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## MamaHenn

Lots of hugs. I hope this surgery gives her some relief. Sorry the nursing staff isn't so helpful. Thank goodness you are there with her. Hang in there!!


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## Lady Organic

All my best thoughts to you and your daughter.


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## kimmidwife

Morning update,
She had a terrible night. Crying and saying she hates her body. I think it was partly a reaction from the anesthesia and the meds. But it is so heartbreaking. I am just emotionally exhausted.


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## pdx

Big hugs, Kim. Nights are so hard in the hospital, and the first day post-surgery is extra hard. Hopefully you're through the worst now. Do you have someone who can spell you today, so that you can get some rest?


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## Maya142

Sending HUGS :ghug:. I hope Caitlyn feels better soon!!


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## Tesscorm

Just sorry she (and you) have had to go through another surgery.  (But am glad it's been done before more complications set in!! :eek).  I hope she starts to feel better soon and then stays that way for a LONG time! :ghug:

(And, yes, we've been experiencing similar with nurses here.  My dad's been in three hospitals since end of January and we've seen our share of mediocre nurses! :ymad:  But, have also had some great one.  )  I don't have the perspective you have but it does seem hospitals/services have changed over the years.


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## Sascot

Thinking of you both, hope things improve soon!


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## kimmidwife

She is doing better today.
She actually had two BM's! But they don't want to advance her diet yet they want to take it slow. She is using the PCA pump much less today. They said they will remove it in the morning and if she does well on PO meds she can go home later in the day.


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## Maya142

Way to go Caitlyn!! So glad she is feeling better. We're thinking of her :ghug:!


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## Clash

Ooh I hope things improve and she is off to home tomorrow! So glad she's feeling a bit better!


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## Mehita

Hugs to you. Just take it all one day at a time...


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## kimmidwife

They said they are advancing her diet but of course it still has not been done yet. She had another BM. So hoping they let her come home. Fingers triple crossed.


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## pdx

So glad that she's doing well, and fingers crossed here too that she can go home today.


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## Sascot

What a relief she's a bit better. Hope it's not too long till she can go home!


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## Optimistic

Kim, did she come home yet? It makes complete sense that she would be frustrated and over this. She obviously will have expert care at home!  

She has made it through the worst part so celebrate her. I'm hoping the surgery pain will end soon so that she can see all of this was worth it and start her life fresh, feeling good. 

Fingers also triple crossed until you give the word.


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## kimmidwife

Hi Everyone,
Caitlyn came home yesterday. I am having an issue with my back and am in excruciating pain. Not really sure what is going on. Caitlyn is doing better. She has not taken much pain meds at all. She says it hurts a lot when she eats and the surgeon said that is normal.


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## pdx

So glad to hear that Caitlyn is home and feeling better.  Hope that eating gets easier in the days to come.  And I really hope that you are feeling better soon--back pain is so horrible.


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## Tesscorm

Just thinking of you, hoping both you and C are improving! :ghug:


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## kimmidwife

Hi everyone,
Sorry I have not updated in a few days. My back pain turned into crazy neck pain. It has been a rough few days.
Caitlyn is finally doing a little better today. Her mood is better and she is complaining less of pain fingers triple crossed that she is on the mend.


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## CarolinAlaska

Hi Kim, sorry I missed all this.  We had a really rough month in April and I had to give myself space.  I hope you are both much better quickly.


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## kimmidwife

We took the sterns trips off her incisions, she has three small ones since the surgery was laparoscopic. It is very red and angry looking around each one. No fevers though. It almost looks like an allergic reaction to me. I have a call into the surgeon. I am waiting to hear back.


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## kimmidwife

We saw the surgeon today. The redness and rash around the incisions are definitely an allergic reaction which is what I figured.
The one thing the surgeon is concerned about though is the amount of pain Caitlyn is having still. She wants her to have an X-ray tomorrow morning and to have blood work done.


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## Sascot

Fingers crossed the X-ray and bloods don't pick up any issues!


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## kimmidwife

I wanted to update, if you didn't see my last update Caitlyn continues to have severe pain two weeks after surgery.
The doctor sent her for an X-ray and blood work today. The blood work was normal. The x Ray showed her to be full of stool. The surgeon wanted her to increase her miralax and see if things start moving. She took four capfuls and went a tiny bit. Still having severe pain especially after eating.
I decided to call the GI Doctor and get his input. He thinks she has a partial ileus. Basically your intestines stop coordinated function after surgery and then have to get back to normal. For some reason hers has not gotten back to normal totally even though some parts are back. He wants us to give her two ducolax at bedtime and see if that helps things get moving.


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## Maya142

Poor Caitlyn - she deserves a break! I hope the Dulcolax works and she starts feeling better soon :ghug:.


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## pdx

Hope she's feeling better today, Kim.


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## Optimistic

I checked in just to case there was some good news about Caitlyn. I hate this is happening to her. What horrible timing - as if any timing is good - but may this come to an end soon!


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## Sascot

Thinking of you both. Hope it works!


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## kimmidwife

Update:
She took two ducolax last night at bedtime. She went seven times today. But pain is not better. I am kind of at my wits end with this. I don't know how to help her. 
Pain really stinks.


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## my little penguin

Is she on abdominal pain meds ( levsin , bentyl , gabopentin)?

How about tens unit ?
Hot packs /ice ?


----------



## kimmidwife

Update to my update:
We noticed the area around one of the incisions got very red. Spoke with the on call doctor and we are on the way to the ER.
He thinks she has an infection.


----------



## pdx

Hope you're able to get seen quickly, and that resolving the infection helps with the pain.  :ghug:


----------



## Sascot

Sorry to hear that! Hugs


----------



## CarolinAlaska

It's horrible.  I hope they get to the bottom of things soon so she can get relief.


----------



## kimmidwife

Hi all,
Just moved her to a room from the ER. Her blood work came back normal. The CT scan showed Free fluid building up in the abdomen in the area under her belly button. (Where the redness is). The area where the resection was done does not appear to be leaking but they can't figure out where the fluid is coming from. They started her on antibiotics and finally gave her some pain meds at about 2am.
Waiting to see the surgeon and also spoke with the GI team to let them know she was admitted and what is going on.


----------



## kimmidwife

Getting frustrated and upset. The surgeon said the report does not show free fluid and he thinks the pain is still backed up stool even though she went 13 times yesterday. I asked for the copy of the CT report and am waiting for it now. I also called the GI again and am waiting to hear.


----------



## kimmidwife

Just spoke with an aquaintance who is an adult general surgeon and her husband has Crohn's disease. She thinks this sounds like a wound infection and she says with Caitlyn having been on steroids for so long and the entyvio maybe that is why her WBC count is normal and she still might have an infection.


----------



## Clash

I'm so sorry for all your sweet girl is going through. You guys are in my prayers. I hope they find the issue soon and resolve it quickly. Hugs!


----------



## DanceMom

kimmidwife said:


> Just spoke with an aquaintance who is an adult general surgeon and her husband has Crohn's disease. She thinks this sounds like a wound infection and she says with Caitlyn having been on steroids for so long and the entyvio maybe that is why her WBC count is normal and she still might have an infection.


Yes! The only time A's WBC is within normal limits is when she's sick. Otherwise it's always low.


----------



## kimmidwife




----------



## pdx

Big hugs, Kim.  Hope Caitlyn gets some relief soon.


----------



## kimmidwife

Update:
This morning after two days on antibiotics, even though they stopped them last night she is feeling so much better that the doctor decided it is a mild infection and he is discharging her home on antibiotics and a special antibiotic cream to apply to the site.
Praying she just continues to feel better!!!


----------



## Maya142

Really glad she is feeling better and I hope it continues :ghug:.


----------



## kimmidwife

Caitlyn had a lot of,oozing this morning from the site. The surgeon said to continue the antibiotics and when Caitlyn has her entyvio tomorrow she will come and see her.
She says she should go ahead and get the infusion which we were concerned about but she said to get it.


----------



## CarolinAlaska

Same for Jaedyn.  She has low WBCs - 4 to 5 - but with infection (c-diff, thrombophlebitis, strep) it got to 8 to 10.  The docs don't seem to listen when you tell them these things though...


----------



## CarolinAlaska

kimmidwife said:


> Caitlyn had a lot of,oozing this morning from the site. The surgeon said to continue the antibiotics and when Caitlyn has her entyvio tomorrow she will come and see her.
> She says she should go ahead and get the infusion which we were concerned about but she said to get it.


Yikes!  Maybe it's good that it is draining, to get it out of her.  I hope the infection turns around quickly.  Which antibiotic is she on?


----------



## kimmidwife

Carolin,
She is on cipro and flagyl.
She is doing much better today. 
She has her infusion both the surgeon and agai team came to see her during it and both were pleased with how much better the infected area looks.
She is in a good mood and feeling much better.
I am so relieved I can't begin to tell you.


----------



## Sascot

What a relief she is feeling a bit better!


----------



## kimmidwife

She had some bad pain last night I am blaming it on dinner. Hoping she just ate to much. She seems better today.


----------



## CarolinAlaska

Glad to hear she's feeling better.  Jae had a bad night last night, but we're blaming supper too (ate out).


----------



## kimmidwife

Thankfully we are starting the week out on a good note!!!!!


----------



## Sascot

Great, hope it continues


----------



## kimmidwife

Sascot,
My fingers are triple crossed!!!
She is smiling and getting back to her happy self!!!!


----------



## Maya142

:dance: SO glad to hear she is feeling better!!


----------



## pdx

That is great!


----------



## kimmidwife

Sorry I haven't posted in a while.
Fingers crossed Caitlyn is doing great!!!
Please G-d long may it continue!!!!


----------



## Sascot

Great to hear! Our fingers are crossed too


----------



## Tesscorm

Great news Kim!


----------



## CarolinAlaska

Glad to hear it!


----------



## kimmidwife

Just wanted to update, we dropped Caitlyn off at camp (for kids with chronic illness) today. This is her last year there as she graduates camp this year so it was kind of bittersweet. She loves it so much and will really miss it after this year. Thankfully she is overall still doing pretty well. She has been having a lot of nausea again and one other issue, these odd red bumps on her knuckles on her hands and feet. They are painful and none of her doctors seem to know what they are. 
She has only had the occasional bout of mild pain which is just amazing for her! Finger crossed for a good summer!


----------



## Sascot

Hope she has a fantastic time! That's good she is doing okay apart from a couple issues.


----------



## kimmidwife

Why the heck can't Caitlyn catch a break!
We picked her up for a little while for her day off today (she is working at camp) she wasn't feeling well last week and we almost brought her home for the weekend but she didn't want to come home. Then today she shows me she has these red spots in various stages of healing all over her legs. I am pretty sure they are erythema nodosum. I still haven't figured out how to post a picture Caitlyn usually does it for me or I would post it here for you all to see.


----------



## Sascot

Really sorry to hear that. Wish she could feel good while enjoying camp. Hope she is still managing to enjoy it. Is she going to carry on?


----------



## DanceMom

I'm really sorry to hear that. A has one ridiculously large EN on her arm. Hers are a dark red and are lighter in the center. Feels like a knot to the touch, and very painful.


----------



## CarolinAlaska

Sorry to hear it.


----------



## Tesscorm

So unfair that she really doesn't seem to get a break!  I hope she is still able to enjoy her time at camp though!!  :ghug: :ghug:


----------



## kimmidwife

Hi all<
she is enjoying her time at camp. it is her first time working ever. it was an adjustment and she doesn't love all of it but it has definitely been a good experience for her. I spoke with the GI on cll last night and he thinks it sounds like erythema nodosum. he wants her to start back on entocort and if that doesn't help then she will need a short course of prednisone.
We just weaned her off entocort finally in May so we are a little bit disappointed but hopefully that will clear it up.


----------



## CarolinAlaska

Sorry she's experiencing this.  I'm glad she made it through the summer.  Camp work can be brutal.


----------



## kimmidwife

Caitlyn has been having a lot of stomach pain, nausea, and severe constipation again. The doctor wants her to get a fecal calprotectin and another MRE.
We are also going to meet with the nephrologist to discuss her low bone density and what to do about it.
Between my two girls I feel like I am on a nonstop merry go round.
I am dizzy. I want to get off!!!!


----------



## Sascot

Thinking of you. Sounds very stressful just now. Sorry Caitlyn is in pain, etc again. Hope they can give her something to help soon


----------



## ronroush7

kimmidwife said:


> Caitlyn has been having a lot of stomach pain, nausea, and severe constipation again. The doctor wants her to get a fecal calprotectin and another MRE.
> We are also going to meet with the nephrologist to discuss her low bone density and what to do about it.
> Between my two girls I feel like I am on a nonstop merry go round.
> I am dizzy. I want to get off!!!!


Best to you and her


----------



## kimmidwife

My big girl is back in the hospital 
We have not made it through a September/ October yet since diagnosis without a hospitalization.
How is she going to get through college or ever have a job?
My heart hurts for her right now.


----------



## Maya142

Poor Caitlyn!! That is really awful. My kiddo is currently taking two weeks off from college after a hospitalization and J tube surgery. It's definitely very hard and she is very worried about school.


----------



## ronroush7

Maya142 said:


> Poor Caitlyn!! That is really awful. My kiddo is currently taking two weeks off from college after a hospitalization and J tube surgery. It's definitely very hard and she is very worried about school.


I am so sorry.  Prayers


----------



## pdx

So sorry, Kim.  Hang in there.  Hope Caitlyn's feeling better really soon.  

:ghug:


----------



## kimmidwife

Anyone know of someone that has tried an abdominal nerve block for Crohn's disease?
A friend mentioned it to me.


----------



## my little penguin

Is she still having pain?
Is her disease under control?
Pain management told us it was an option for ds if things didn't get under control
But
Big but 
Since it's surgery and not minor surgery 
To try meds
Biofeedback
Hypnosis 
Abdominal massage 
Pain amplification physical therapy programs
Pain meds 
First 

Ds was suppose to start the pain amplification program that has physical therapy 
But once we started him on solids and gave him miralax again to help with formula 
Painwent away 
This was after 4 hospital stays and two months 

Thankfully we found the cause


----------



## kimmidwife

Update!
The good news which is also the and news is that the colonoscopy did show us what is going on.
The surgical anastomoses (that is where they put the two intestinal ends back together after her initial resection in 2010) which they just fixed with surgery in May is flaring up again. Nowhere near as severe as last time but it was already ulcerated again.
Secondly for the first time she has disease in the end the large intestine almost to the rectum. She had two large ulcerations. One was bleeding and he had to put a special patch on it to stop the bleeding and then the whole area was inflamed.
He wants her to start hydrocortisone suppositories and Apriso to add in some extra coverage for that area.
She can start weaning down the prednisone very slowly then she will continue the budesonide and Entyvio.
And also add in flagyl for two weeks.
I asked him if he thinks this means the Entyvio is not working and he said let's see what happens over the next few weeks.
They also put down the pill camera into the duodenum. Hopefully she can come home tomorrow.


----------



## my little penguin

Hasn't she been on entyvio for over a year ???
With very little time off steriods 
Can you get her records reviewed for a second opinion ?

Glad you found the source of the pain 
But sorry the meds aren't fixing things and letting the disease progress 

That's very concerning 

Hope she gets some relief soon


----------



## Maya142

I agree, that is pretty scary. Hasn't Caitlyn already had surgery twice?

It seems like she has been hospitalized many times on Entyvio and been on steroids a LOT. That's a pretty good indication that Entyvio is not controlling the inflammation. 

I would get a second opinion and try something else. Stelara was just approved for Crohn's.

For adult gastroenterology, Mayo Clinic is #1. Cleveland Clinic is also up there. If she's still considered pediatric (can't remember if she's 18 yet?), I'd go to BCH or CHOP since they have the biggest IBD centers.

Sending hugs!! Poor kiddo, no wonder she is in so much pain.


----------



## kimmidwife

Maya,
She is over 18. I am not sure if she can do stelara. She is allergic to remicade, cimzia, and  Humira. She is also allergic to Imuran so any of the 6 MP drugs are not an option.
I agree though. I think Entyvio is not doing the job. Question is what is left?


----------



## my little penguin

Stelera is not anti tnf alpha 
So it's different 
There is ivig as well


----------



## Maya142

Stelara is completely different - IL 12 and IL 23. She wouldn't necessarily be allergic to it if she is allergic to anti-TNFs.

There are also multiple drug trials for IL 23 inhibitors that are going well.

If you take her to a big research center like Mayo, they will definitely have trials. You'd have to see if she'd qualify based on her history (I'd guess she's a bit complicated with multiple surgeries) but since she is over 18, there is a lot more out there. There are some new drugs that are doing really well.

Mount Sinai in NYC also has a lot of trials and sees both pediatric and adult patients. They are VERY good for adult IBD.


----------



## kimmidwife

Caitlyn is being discharged.
We are going to have a consult with the adult team next week on Friday. I will keep you all posted.


----------



## CarolinAlaska

I'm sorry to hear Caitlin was back in the hospital.  Jae is going downhill this month also, but not to that point, thankfully.


----------



## kimmidwife

Caitlyn is still having tons of pain. Can't wait for the consult on Friday.


----------



## kimmidwife

We met with the Adult GI. First of all I want to say he was very nice. He spent over an hour with us getting Caitlyn's complete history from diagnosis until now. He thought it was very interesting that the only drug that has given her a real remission for any time was low dose naltrexone.
He thinks her case is incredibly complex. He wants us to go see the doctors at University of Miami because he says they have access to research studies which he does not. 
He also says the head of their program is supposed to be one of the top in the country.
I told him what an awful experience we had with the peds side there and we really don't want to go back. He said the adult is much better then the pediatric.
He encouraged us to think about it.
Meanwhile over the next week he is going to consult with several other GI docs and talk with our regular doctor and then call us back with what he thinks the next move should be.
He is also very concerned that her disease has moved alll the way down the large intestine almost to the rectum as this has never been the case with her in the past.


----------



## Maya142

Very glad he is going to come up with a plan for her.

Will keep my fingers crossed for Caitlyn!! Is she feeling any better?


----------



## kimmidwife

Maya,
She is feeling a drop better.


----------



## pdx

The new doctor sounds good--hope that Caitlyn is feeling better soon.


----------



## Farmwife

I glad this GI is listening. 
How does your daughter like him?


----------



## Tesscorm

It's sounds like it was a very productive apptmt.  And great that he's being so diligent in figuring out her case!  I really hope he comes up with a treatment plan that will get and keep Caitlyn feeling good for a long time!!!

:ghug:


----------



## kimmidwife

FW,
She was discouraged by what he said. She is still having to much pain. She was feeling super exhausted from the Apriso. We switched it to the night time and she felt a little more energetic today.


----------



## Maya142

Sorry to hear Caitlyn is not feeling well. 

I'd definitely get a second opinion - especially since she is a complicated case. 

Sending hugs -  really hope they can come up with a plan soon :ghug:.


----------



## my little penguin

Hope the folks at Miami (or another university hospital )can help her ??


----------



## Farmwife

kimmidwife said:


> FW,
> She was discouraged by what he said. She is still having to much pain. She was feeling super exhausted from the Apriso. We switched it to the night time and she felt a little more energetic today.


I can't blame her for the discouraged feeling.  Poor kiddo. 
I'll be praying for you all.


----------



## kimmidwife

Caitlyn is feeling severely fatigued. All her labs are good. CBC is perfect. B12 is good. We can't understand why she is so tired. I was wondering if it could possibly be from the Apriso?
We switched it to the night to see if that would help. Maybe it did very slightly. Anyone have any other suggestions?


----------



## my little penguin

Didn't but they find inflammation at the surgical site in her scope as inpatient?
Uncontrolled or under controlled inflammation causes fatigue 
I would assume that versus a 5-asa being the issue 
How are they planning to stop the inflammation?
Is she on steroids ?
If so that interferes with sleep and always makes ds more tired


----------



## Maya142

Have they checked her Ferritin? My daughter had a low-ish Hemoglobin (but not low enough to be worried) but when we checked her Ferritin, it VERY low and she needed iron infusions.

It sounds like her scope was pretty bad - inflammation in lots of places - that will definitely cause fatigue .

Poor kiddo. I hope they can figure out a plan for her SOON.


----------



## kimmidwife

Maya,
I am not sure if they did. But her hemoglobin was 12.5 which is really good.


----------



## my little penguin

DS hemoglobin has always been close to normal even when ferritin is very low
Ferritin is the storage backup so it drops well before hemoglobin 

Worth getting checked


----------



## kimmidwife

I will have to see if they checked it. I have a message into the doctor to see if they did. If not when she gets her Entyvio next week I will ask if they can check it then.


----------



## Catherine

Is she on steroids?  As they can increase hemoglobin.


----------



## kimmidwife

Yes she is on steroids. She is still having pain but is not complaining as much about the fatigue.


----------



## Maya142

Any progress with the new doctor and his plan going forward? Has he made any suggestions yet about meds?


----------



## kimmidwife

Maya,
He finally called yesterday. He wants Caitlyn to be seen by University of Miami as he thinks her case is to complicated for his office to handle. Meanwhile him and her current doctor want her to continue with Entyvio, Apriso, Budesonide, Cannasa Suppositories and weaning down the prednisone.
Her fatigue is better. I really think it was from the Apriso. We are trying to get her an appt at the other doctor. ,eamhwile she has her next Entyvio today.


----------



## kimmidwife

We saw the nephrologist yesterday. She was really good. Very thorough. Caitlyn's ultrasound came back showing some small kidney stones but everything else is normal. She wants her to do a 24 hour urine next week. We also discussed the odd rashes she gets and the facial flushing after eating. She thinks that along with her wired drug reactions are a sign of another possible autoimmune disorder. She wants us to see a colleague of hers who is a pediatric rheumatologist even though we saw an adult one already. She also wants her to see a cardiologist and have a tilt table test done.
Never a dull moment.


----------



## kimmidwife

Update, once again Caitlyn is having severe pain.
We Finally got a call back from Caitlyn's GI about her pain. (Sadly this is the norm with this office. We stay because we like him so much but his staff is awful about giving messages.)
We talked and he is wondering if this pain could be from the APRISO. He said he has had a few kids who started getting severe stomach pain from Apriso. 
The plan is to take her off. Restart Methotrexate with the Entyvio and try to get her in with the pain doctor.
In the meantime we are still on the cancellation list to get in faster with the doctor in Miami for another opinion.
He and I are both at a loss at this point what to do with her. Really hoping the Apriso is the cause of the pain.


----------



## Clash

Hope the changes help and he can get you in with the pain Center. Hope an opening comes up soon with the other doc. Hugs!


----------



## Maya142

Really sorry to hear Caitlyn is in pain again. I'm glad they are restarting MTX.

Hope you get off the cancellation list quickly -- fingers crossed.


----------



## pdx

So sorry to hear this, Kim.  Hope the pain doctor or doctor in Miami are able to help, and that you get in to see them soon...


----------



## kimmidwife

We had a rough weekend. Caitlyn got a severe migraine from the Entyvio. We had to take her to the ER.
She continues to have severe stomach pain. 
The good news is the specialist GI doctor that we are seeing in Miami got a cancellation for Wednesday instead of having to wait for January so we will see her then.


----------



## Maya142

Sorry to hear she ended up in ER. Poor Caitlyn .

I'm SO glad you finally have an appointment -- I really, really hope they can help her and get her on something new quickly.


----------



## CarolinAlaska

Oh, poor girl.  I hope she is feeling better.


----------



## kimmidwife

We went to see the new GI "Guru" yesterday. We were there for five and a half hours. Four of which we spent waiting for her. It was a little crazy. She had some interesting thoughts but we are definitely not switching to her as our full GI doctor not because of how long we waited but because she has no appts. You have to wait so long in between appts to see her. She told us she wants to enroll Caitlyn and her little sister in a research study. She thinks they both might have a type of Crohn's that is harder to treat. She told us she wanted to get Caitlyn in for another colonoscopy ASAP (ASAP is March since that was the soonest appt she had and a follow up after that in April.)
She really didn't have any other answers except maybe trying Stelara. Caitlyn was really disappointed in how the appt went.
Today we had an appt with the pain management doctor.
That was a much more positive experience. 
She also thinks something else is going on. She wants Caitlyn to see the geneticist. She also wants her to see the cardiologist. (We were already going to see them). 
She changed her Amitriptalline to Nortriptalline as she said she went to a recent conference and they said it is better for pain. 
Then she said, (I almost fell out of my chair at this Point because I was not expecting this)
She wants Caitlyn to start immediately on CBD oil and think about getting a medical marijuana card once they become available in our state. (It passed this election).
Caitlyn agreed to try it. Then she also wants her to see and acupuncturist and to see a therapist that specializes in chronic pain.


----------



## Maya142

Would Caitlyn's current GI be willing to switch her to Stelara? I think she definitely needs a different drug - Entyvio clearly is not doing a whole lot for her.

There are also trials - did the doctor not mention those? There are many promising drugs that are currently in Phase III trials - MLP posted a presentation about them a few days ago. 

Have you considered Cleveland Clinic in Florida? 

I'm VERY glad the pain management doctor has some good ideas for Caitlyn. That's wonderful!


----------



## Maya142

This is the presentation: http://online.ccfa.org/site/DocServer/CCFA_Ingle_5_2016_--_What_s_New_IBD.pdf?docID=32330

Maybe Caitlyn would feel better if you showed her that? I know my daughter likes to know she has options, even if the drugs are still in trials.


----------



## my little penguin

The colonoscopy wait might be to have that particular doc do the scope 
Vs who ever has first available 
I know our GI is booked solid for 5 months in advance 
But ... if the doc establishes her as a regular patient 
Then typically what happens is for us
GI says he wants ds seen in xyz months and scheduler makes it happen 
Assume until they get the scope results and see how bad she is that they would leave her on the regular this an opening schedule 
Larger faculties see more patients so they do have waits 
But have a lot more exp 
Can't you book the scope now for march aand ask to be put in the first available wait and if things turn around so be it 
But letting the GI see what is what 
Plus they will have more exp with insurance and getting things approved 
You were a last minute referral so that would explain the wait 
But once you have seen her a few more times you might change your mind 
Your dd didn't get to this state in one day and she has had more than a few GIi think you need to give the doc a chance to get to know her and her history more 
Instead of thinking that a GI will have an instant answer 

It's going to take a lot of trail and error and she seems to want to try Stelera and put her in a research study to help figure out things more


----------



## kimmidwife

Hi Everyone,
I have been in the hospital yslef and just got out earlier this week. I was being treated for my chronic illness that I have. Still feeling yucky. I hope everyone had a wonderful Christmas.
I wanted to update on Caitlyn.
She has not been in good shape at all.
I left a message with our regular GI and was told he was on vacation until January 3rd.
I didn't really want to speak with the other doc on call as she doesn't know Caitlyn and is new the the practice so I just left a message.
This morning to my surprise her doctor called us from his vacation.
He said he was picking up messages and returning calls from any of his more severe patients that could not be handled by anyone else. I was so grateful he called.
Anyway he is not sure why Caitlyn is having such severe pain. He wants to change her to Stelara and also start Reglan for her gastroparesis. He also wants her to keep her diet very light. (He wanted to put her on liquids for a few weeks but my stubborn 19 year old refuses.)
Oh and MLP,
We are going to do the colonoscopy with the other doctor in March and are on the list for cancellations. Her regular doctor was not so sure about her doing another colonoscopy as she just had one in October but he is going to speak with her to discuss more.


----------



## Maya142

Glad you have a plan!!

Has she ever tried Domperidone for her Gastroparesis? It is a pain to get (we have to get it from Canada) but it works sooooo well for my daughter. 

Another, more drastic option, might be to try a tube. We do overnight feeds and then my daughter eats what she can in the day. That way a good 50-60% of her diet is liquids. It really helps with her GP. Drinking the formula did not work well for her because her GP is bad enough that even liquids do not empty out of her stomach quickly. An NJ/GJ/J tube really made a big difference.

It also REALLY helped with stomach pain.

Formula will also help her IBD, even if it's not EEN. 

Glad they are going to try and get her Stelara. Fingers crossed!!


----------



## my little penguin

Same here in partial een
Ds drinks 50% formula (neocate jr ) a day for GP
His liquids are normal for emptying so this works well 
The rest are two small solid meals 
But he did do 6 weeks of een this past spring 

Good luck with the scope and Stelera.


----------



## kimmidwife

Caitlyn has been invited to possibly take place in a research study. We go Monday to see if she qualifies. I will keep you all posted.


----------



## kimmidwife

We also saw the new pain doctor again today. She really wants Caitlyn to try acupuncture and aqua therapy. She also wants Her to see the geneticist and the cardiologist both of whom we have appts with in March. 
I am exhausted from all these doctors.


----------



## CarolinAlaska

I know what you mean.  Hopefully someone can find real lasting solutions.


----------



## kimmidwife

The study drug is called RHB104. It is a combination of three antibiotics, Clarithromycin, Rifabutin, and Clofazimine.
There are some major possible side effects including staining of the teeth as well as each drug having a side effect of stomach pain.
After much discussion I think Caitlyn is not going to do it. There is however another research study she might qualify for, they are going to review her records for that one.


----------



## my little penguin

http://www.redhillbio.com/RedHill/T...ID=1&LNGID=1&TMID=178&FID=1362&PID=0&IID=5047

For those wondering 
Rhb104 is the US study of fighting "MAP" as a treatment for Crohns 
By using three antibiotics


----------



## kimmidwife

Yes that is true MLP and mentioned in the literature.


----------



## Maya142

I hope they are able to find a study she qualifies for and she can do. Aren't there any biologics in trials that she could try?

My daughter found that aqua therapy REALLY helped with pain. It was also a lot of fun.
I hope it helps Caitlyn too. We haven't tried acupuncture yet, but we'll probably try it soon. If Caitlyn tries it, let us know how it goes!

Sending hugs :ghug:.


----------



## kimmidwife

I will Maya. I am not sure we will do it. The p,ace is quite far from our house and I don't know if they take our insurance.


----------



## vtfamily

kimmidwife said:


> The study drug is called RHB104. It is a combination of three antibiotics, Clarithromycin, Rifabutin, and Clofazimine.
> There are some major possible side effects including staining of the teeth as well as each drug having a side effect of stomach pain.
> After much discussion I think Caitlyn is not going to do it. There is however another research study she might qualify for, they are going to review her records for that one.


I hope you find a good path soon.  It is crazy to think that a good solution for a disease that causes severe gut pain is a drug combo that can cause gut pain too.

Prayers for you and your family.  I'm interested in you progress.
Cheryl VT


----------



## kimmidwife

Sooo
Some bad news/good news.
When I collected Caitlyn's poop last week for her fecal calprotectin I looked at it and said to her your poop looks like it did when you had cdiff. (Hers has never had the cdiff smell only looks odd.) I called the doctor and told them. Sure enough this morning they called she has cdiff again.
So why is this also good news?
I am hoping the cdiff is the cause of her really severe pain she has been having and so in a way may be an easier fix. Fingers crossed. We started her on vancomycin today.


----------



## Maya142

Oh no!! Poor Caitlyn! I hope the CDiff does not trigger a flare for her.

My daughter just had CDiff too and her Crohn's is flaring. But Vancomycin did get rid of the bad diarrhea and cramping and some of the pain.

Fingers crossed it helps Caitlyn!


----------



## kimmidwife

I am sorry to hear Maya. It seems like our girls are a lot alike.


----------



## Maya142

It sounds like M will be starting Entyvio soon, if insurance approves it.

Did Caitlyn have any major side effects? Anything we should know? We were told the infusions are pretty short.

Thinking of Caitlyn - hope she feels better quickly. Sending hugs :ghug:.


----------



## vtfamily

I'm putting this under the heading of "you know you've been dealing with this stuff too long when..."

It's good to be able to "spot" the trouble signs so you can get an early jump on a solution.

Hugs to you both.
Cheryl VT


----------



## kimmidwife

Maya,
It started giving Caitlyn migraines. Some people reccomend asking for extra fluid during the infusions and say it helps. It is why we are stopping it.


----------



## Tesscorm

So sorry to hear about the c.diff., although I understand why it's a good news/bad news thing.  I am just sorry that she never gets a break.  Lots of hugs! :ghug:

Maya - good luck with Entyvio!!  :ghug:


----------



## pdx

Kim and Maya--sorry to hear about the CDiff for both of your girls.  I hope that Caitlyn responds quickly to the vancomycin, and Maya, I hope that your daughter is over her CDiff infection, and that the Entyvio works well for her.


----------



## CarolinAlaska

Oh no, Kim.  Your daughter is suffering such a rough patch right now.  The storm is worst before the end, right?


----------



## kimmidwife

Yes indeed. Good news though we hopefully found a place for her to do aquatherapy that will hopefully take our insurance. Our insurance is going to speak with them as the place said they were willing to work it out with the insurance.


----------



## kimmidwife

Met with the GI today. We will start Stelara in two weeks. She has to finish the vancomycin for the cdiff first.
Caitlyn's fecal call is not bad 219 but she is still having very bad pain. Just can't  figure this pain out.


----------



## pdx

Hope that Stelara works really well for her.  Cdiff can cause pain, right?  Maybe she's still fighting that?


----------



## Maya142

My daughter had pretty bad stomach pain and cramping with CDiff. It got better with Vancomycin, but the CDiff triggered a Crohn's flare, so she continued to have pain after finishing Vancomycin.

We re-tested for CDiff when she was almost done with Vancomycin and it was negative, which is how we knew it was IBD.

She was eventually put on Prednisone and the pain is MUCH better.

Given how long Caitlyn has been in pain and been struggling with inflammation, it is also possible that some of the pain is amplified pain/visceral hypersensitivity. 

I hope Stelara goes well :ghug:.


----------



## Tesscorm

Kim, I'm sure this has been considered and looked at but, is it possible the pain is coming from scar tissue and/or adhesions?


----------



## CarolinAlaska

Is her pain worse with menses?


----------



## kimmidwife

:angry-banghead:
Tess,
We considered that but the doctor doesn't think that is it. Carol, her pain is really bad during her menses. 
This new doctor we are seeing thinks she and her sister might possibly have Ehlers Danos syndrome.
I am not ready to think about this so have decided to take the head in the sand approach unti we see the geneticist in March.
Not allowing myself to look into it to deeply or research it.


----------



## Sascot

Sorry to hear that. I know Amy's pain gets much worse just before and during her periods, it's not nice. Hope you get to keep your head in the sand


----------



## kimmidwife

We are still fighting cdiff. Stelara is on hold. Her doctor decided to try something different instead. Will update as soon as I know more.


----------



## kimmidwife

So I owe to all a big update. This is update number one.
Two weeks ago Caitlyn had a fecal transplant for CDiff via Nasal-duodenal tube. The procedure itself terrible. They didn't sedate her enough and she woke up in the middle and started vomiting. They managed to finish the procedure once the vomiting stopped but then her blood pressure fell and wouldn't come back up and we ended up being there for hours and hours. Finally it rose enough for them to send us home.
Then two nights later blood started pouring out of her nose and mouth. We had to race her to the ER.  
At the ER they said the ND tube must have damaged  blood vessel in her nose and it had to be cauterized three times to get the bleeding to stop.
She is having terrible stomach pain still and her CRP is elevated but it can take two months to work.


----------



## kimmidwife

Update Number two,
I decided to keep these separate as they are separate issues.
For a while we have been thinking there is something missing in the bigger picture. This new doctor we are seeing for Caitlyn's pain has been sending us for sir valioms as well. She decided we needed to take by of our two older girls to see the geneticist.
The geneticist definitely thinks Caiyn has Ehlers Danos Syndrome. I felt like he blew off daughter number two a little bit. With her he said she has hypermobility but was doesn't think that it's full blown EDS. He also wasn't that familiar with the rare disorder daughter number two has called CSID, congenital sucrose Intestinal deficiency.
I was kind of upset with him not taking as much time with her. I know Caitlyn  is very very complicated but daughter number two deserved a little better treatment then that. I also had felt like he really reviewed Caitlyn's record before we came but not so much with daughter number two.
Then Caitlyn had the tilt table which was positive for moderate POTS. The cardiologist was very nice.


----------



## Maya142

Poor Caitlyn! That sounds miserable. We were told the fecal transplant would be done via colonoscopy - the tube sounds rough.

What treatment are they using for her Crohn's? The fecal transplant was for the CDiff, right? We were told it didn't do very well in IBD trials.


----------



## Clash

Ughhh POTs so sorry to hear that! In most of the POTs groups I belong to there is a large contingent of member that have EDS as well as gastroparesis. Have they looked at all forms of dysautonomia?

I hope the fecal transplant helps with the Cdiff and something can be found to help with her pain. Hugs!


----------



## kimmidwife

Maya,
We meet with her GI next Tuesday to discuss when we will start Stelara. Interestingly, I was looking at her genetic report from 23 and me and it said she is one of those people whose CRP doesnt respond greatly to changes. I guess that is why blood work is never the greatest indicator of her disease process. I didn't even know that was a thing.


----------



## Farmwife

Hi Kim
Sorry to hear about all the going ons that your girls are having. 
Their has been an overhaul to the eds classification standards.
Hopefully I'll be able to post a link from my tablet but if it doesn't work I'll come back later to update it.
http://ehlers-danlos.com/2017-eds-international-classification/

If I've learned anything from EDS, nothing is as it should be. 
These kids don't fit the mold. These kids and adult bodies don't listen to rules.
Please feel free to p.m. me if you want to talk.

Hugs


----------



## kimmidwife

I have been really down so I haven't been online a lot. So much going on. Caitlyn has not been doing well. She had a colonoscopy last week. It was not horrible but not great from what the doctor can see and we are still waiting for the biopsies. She has lost 10 pounds and the doctor is think g about putting in a G tube. We finally got the plan for Stelara in place. She is going tomorrow for the initial dose. Please say a prayer for her that she is not allergic to it.
Her little sister is not doing great either and we are trying to up her LDN and see if that works of not on to remicade.
On top of all this my 12 year old wasn't growing so he had a couple of tests done by The pediatrician a bone age showing he is 1 year behind and he did a fecal calprotrectin just to rule out Crohn's, the results were not what we hoped for. It was slightly elevated but we are going to retest in two months and then decide what to do next as his brother (my oldest) had a similar thing and is now 100% fine no issues.
I am really down between my illness and theirs just not sure how much more I can take.


----------



## Farmwife

Oh Kim :hug:
I'm so sorry to hear all this. 
Your an amazing mom and person.  
Even the best get beat down.
Hugs to you and yours. 

You can pm any time you want to talk.


----------



## Maya142

As you know, M has a tube. We started out with an NG tube, then an NJ and then a GJ and now she finally has a G and a J. Needless to say, we can answer any tubie questions you have!!

The tube has been miraculous for M. She thinks it's MUCH better than having an NG/NJ tube. I will say that the J tube has been harder to deal with than the G or GJ tubes. 

The G tube surgery was not too bad. She spent two or three days in the hospital, but some kids are out after just one night. The tube was placed by interventional radiology. The first two days were rough - she needed IV pain meds - but after that we were able to switch to oral pain meds.

Things that used her abdominal muscles - sitting up, coughing, laughing - were painful for about a week or two. It got much better after the first two days. 

The website feeding tube awareness has a lot of info about tubes and about the G tube surgery.

M has gained 25 lbs since she got a tube and is doing GREAT in terms of her weight. Her bone density increased significantly (she had osteopenia prior to the tube) and she has a lot more energy. We haven't ever regretted the tube, not for a moment!

Good luck with Stelara - I hope it is Caitlyn's magic drug.


----------



## kimmidwife

Thanks Maya and FW,
I am going to look at that site Tomorrow. Caitlyn has been looking at it.


----------



## pdx

I really hope that Stelara works well for her, Kim. Wishing for good health for your whole family.  :ghug:


----------



## Maya142

I wanted to add - considering Caitlyn's Gastroparesis, you might want to try an NG tube first to see if she can even tolerate feeds through her stomach. If she can't, then you should discuss whether you want to try a GJ tube or a J tube. Each has pros and cons. 

We started out with a GJ, but because M had such poor motility, it wouldn't stay in her small bowel - it kept flipping back into her stomach. So we then had to place the J, which is a more major open abdominal surgery - a 2.5 inch incision through her belly button and 5 days in the hospital.

It's just worth discussing before you actually do surgery, so maybe you can save her from going through two separate surgeries.


----------



## kimmidwife

Maya,
It is interesting but Caitlyn's stomach motility has improved while her small intestine motility is terrible. We are supposed to be doing a special test to check it but have to wait for the test to be approved by the hospital as it is new.


----------



## kimmidwife

We had to go in Monday for Caitlyn to get weighed because they were very concerned about her weight at her infusion on Friday. She lost another 2 pounds between Friday and Monday. They doctor decided she needs the G tube ASAP to stop this weight loss. She will be having surgery Thursday.
I am so depressed. I just feel like our whole family can't catch a break.
Caitlyn on the other hand is trying to be positive about it. I just love that girl so much. Why does it have to be so hard for her?


----------



## Maya142

Sending hugs - hope it goes well. Way to go Caitlyn for being positive!!

M always says having a GJ or a J tube is much, much, much better than having an NJ or NG tube. Plus, she feels a whole lot better now that she is not severely underweight and malnourished. I bet Caitlyn will feel a lot better and will have a lot more energy once she is getting enough calories.

Good luck!!


----------



## pdx

Hope the surgery goes well--I'll be thinking of you all on Thursday.


----------



## Tesscorm

Good luck on Thursday!  I do hope this will help in getting Caitlyn feeling better (and lessening some of your worry)!

:ghug: :ghug:


----------



## Clash

Sending hugs! I hope the surgery helps her to gain the weight back!


----------



## Farmwife

I hope it goes well. 
Grace hated the ng tube but loves her gtube.


----------



## Mehita

Sending hugs, Kim! Maybe the G tube will be the break you need? You are a great mom and support system for Caitlyn and we are all here for YOU. Hang in there, momma!


----------



## kimmidwife

Surgery is done. We are in a room. She is doing okay right now.


----------



## Optimistic

I'm glad to hear this. This and C and you have been on my mind a lot these past few days. I hope you feel a little better to have this ugly  step behind you and she recovers quickly. 

I'm sorry. I'm not sure why some people hit a string of really bad luck that goes on for too long. I'm hoping and praying you have a reset in right direction.


----------



## Maya142

Fingers crossed for an easy recovery and a quiet, boring night!! Very glad Caitlyn is doing ok after the surgery.


----------



## pdx

Thanks for the update. Hope that recovery is quick and easy.  :ghug:


----------



## kimmidwife

Caitlyn had a rough night with pain. She is very sad today. It has been rough on all of us. Hoping tomorrow is a better day.


----------



## Maya142

Poor Caitlyn!! Tell her M had a hard first day too. Every day got better and better. 

Tell Caitlyn to hang in there. Surgeries are always rough, but once she is gaining weight and feeling better, it will be worth it.


----------



## pdx

Wishing you a better night tonight.  Are you still in the hospital?


----------



## Maya142

How's Caitlyn doing? Any better?


----------



## Farmwife

Just checking in also. 
Out of everything,  this was the hardest on me. 
The fact that a gtube was now apart of my girl. 
That she actually needed this to survive.
Hugs


----------



## kimmidwife

Thanks everyone. She came home yesterday evening. It has been a really rough day. She has been very down and I have been very down. We had a long talk with her GI this afternoon. He has been very supportive and he said he wants her to be happy. He said we are going to try and do 80/20 and let her eat a little bit of soft foods and see how she does.
She felt much better after that.


----------



## Maya142

Glad Caitlyn is feeling better. Poor kiddo - she has had a REALLY tough time. Fingers crossed that she gets better soon.


----------



## Farmwife

Glad your home. 
Hopefully, once she's healed and getting enough calories, her attitude will improve.
It made a world of difference when I could see the change in grace. 
Did they show you how to replace it?  Every 3 months, right?


----------



## kimmidwife

FW,
They are going to change her to a Mickey button in June the one we have now can't be changed out.
She is doing mentally a lot better. We went out with it a few times.


----------



## Maya142

Once she has a Mickey button, it really won't show at all!! When M had a long tube she wore loose t shirts to hide it. She didn't like the long tube either.

We changed to a Mickey button after 6 weeks or so, if I remember correctly.


----------



## kimmidwife

Thanks Maya!


----------



## kimmidwife

Caitlyn had an endoscopy today to replace the G tube for a Mickey button. The doctor saw her stomach about an inch and a half above the G tube was very inflamed and ulcerated. He was very surprised by this. He said it looks like someone who has been taking to much aspirin or NSAID's (neither of which she takes). He said H pylori can cause it so he tested for it. Has anyone had anything like this?
I am happy that at least we have an explanation for her pain. He put her on liquid carafate. 
Her CRP and SED rate (Hers never really go up a lot but were slightly elevated)
both decreased which he is very happy about as it shows hopefully that the Stelara is working.


----------



## Maya142

How does she like the Mickey button? My kiddo really preferred it.

M also has had gastritis many times, once with several ulcerated areas. We also used Carafate which helped a LOT.

The best part of the G tube is that she can just use that for her liquid Carafate (which isn't the best tasting) instead of having to drink it !!!

How is her weight doing since the G tube was placed?

Glad her ESR and CRP are slowly going down!! Fingers crossed.


----------



## my little penguin

Non h pylori gastritis here as well
Glad the tube went well and Stelera is working


----------



## kimmidwife

Maya,
Caitlyn is having terrible pain again since he changed the G tube out. Any suggestions for this? Is it normal to have pain with the change from one to the other.


----------



## Maya142

Hmm...no. I would call the GI or interventional radiologist or whoever did this.

The one time you can have bad pain is if they stretched the stoma - so if they went up a size or two (or three) when they switched tubes. 

That REALLY hurts - M was doubled over for a week and after that we took her right back in and switched back to the smaller size.

How many days has it been since the change? Do you have a balloon button or non-balloon? Does it look tight by any chance?


----------



## kimmidwife

Maya,
Ended up being to tight. We took out some of the water and he ordered her the bigger tube which we will replace when it comes. Pain is still bad some the PA wants her to take the carafate one hour after eating and then not eat for a minim of two hours. She is also god gto do Zantac for two weeks.


----------



## Maya142

Did they teach you how to replace the tubes at home? She has a G, right? That can be done at home or in the clinic without sedation. It's very quick.

A tube that is the wrong size can cause lots of issues. Too small and as you know, it hurts. Too big and it leaks and the skin around the stoma can get very irritated because of the leakage.

We also did Carafate the same way - it's a pain to fit in to your day but it does work wonders. I actually still wake M up early to give it and then let her go back to sleep. It's otherwise very hard to fit in with all her meds/meals.


----------



## Farmwife

Just checking in.  
I thought of you guys while I was changing Grace's tube.

We change at home and it's easy to do. 
Did she get a mickey or a mini (atm 1) button?


----------



## kimmidwife

Hi FW,
Caitlyn has the Mickey and is having a lot of issues. I am also sick as a dog.


----------



## Maya142

What's going on with her tube? Anything we can help with? How is she feeling - any better on Stelara?


----------



## Farmwife

Yes,  what issues? 
I'm sure Maya and I can write a whole list of issues with tubes.  Lol


----------



## kimmidwife

Hi Maya and FW,
I am pretty sure it is granulated tissue. We had a local GI doc take a look and he agreed. We got some granlousos ointment that is supposed to help.


----------



## Maya142

That can hurt a LOT but it is usually pretty harmless. We cauterized it with silver nitrate sticks. They showed us how to do it in the office. Cauterizing it hurt (burns) but it really works well. 

We also tried several different ointments (including a steroid cream) which helped a little, but not much.

The good news is that for us, once the site had really completely healed, the granulation tissue went away. 

My daughter's site took a long time to heal - 6 months or so  (she's just a slow healer) but after that, we didn't really have to worry about granulation tissue around her G tube at all.


----------



## Maya142

If you look here, there are some tips for dealing with granulation tissue: 

http://www.feedingtubeawareness.org/troubleshooting/tube-sites/granulation-tissue/


----------



## kimmidwife

Thanks Maya!!!


----------



## Maya142

Really hope she feels better soon. It took us quite a while to get used to dealing with a tube -- it took months, not weeks. 

Now we're very comfortable dealing with M's G tube but her J tube (which was placed much more recently) is another story .


----------



## Farmwife

Grace never got the built up scar tissue but she did take awhile to heal. 

Grace had had here's for years now and it's just second nature to deal with it.  Amazing how time flies.

I hope she feels better soon.


----------



## kimmidwife

I forgot to update, Caitlyn ended up in the ER while at travel camp. She had some kind of infection around the G tube. They treated her with antibiotics. She is doing better. We went to visiting day for the younger kids yesterday. My little one is doing well at camp thankfully. The nurses said she did great with the Humira shot.
Several of Caitlyn's friends who were there visiting their siblings didn't want to talk with her and treated her differently because of her G tube. She was really sad about it. You would think older teenagers would be better then this. I am so sad for her.


----------



## Maya142

What?!! How do they even know about her G tube?! Is this a Crohn's/Colitis camp?

I am really shocked . That's awful!!

 My daughter has NEVER had trouble like that. Her friends have been extremely supportive even with a very visible NJ tube. She was in high school at the time and kids did ask about it but she explained very simply that she had Gastroparesis and Crohn's and had trouble eating and had to gain weight.

Her psychologist helped her a lot with explaining it to people. She tends not to let her G and J tubes show now though - she will make sure she is wearing a tankini or one-piece at the beach.

She says it's easier than people staring and asking question, though she has certainly never had anyone say anything "bad."

I'm so sorry to hear that. Sending hugs to Caitlyn. 

One thing M has said is that it has become easier as she has gotten older. Now that she is in college, she finds college students and young adults are VERY accepting and understanding. It's much easier for them to understand than younger kids.

So I expect it will get better.


----------



## Maya142

As for the infection - M had two infections at her G tube site in the beginning - about 2 months after the G tube surgery. She got oral antibiotics and Bactroban for them. Now if we see any sign of an extra redness or discharge, we use Bactroban.

No G tube infections since then.


----------



## kimmidwife

Maya,
Thanks,
I a, going to call tomorrow and ask about bactroban as it seems like the infection is coming back. The kids saw the tube as she was using it and the backpack.


----------



## Maya142

Poor Caitlyn . I am so sorry she's had a hard time. I believe there is a teen group on Facebook for tubies - my daughter is not part of it, but if you message Feeding Tube Awareness, they can refer you there.

Does Caitlyn have to do feeds during the day? What's the rate you're using?

In the beginning, we did 18-20 hours of feeds, so M had to wear the backpack too. That was with the NJ tube, and she was pretty self-conscious, but had to go to school with it. She got used to it and so did everyone at school.

But now that she has gained weight, we only need to do overnight feeds to maintain her weight. That is much easier - she just gets them while she's asleep and is disconnected before breakfast.

So once Caitlyn gets to a healthy weight, you will probably be able to cut down on hours. That will help with the conspicuousness.

Is Caitlyn headed to college in the fall?

How is she feeling?


----------



## kimmidwife

Maya,
She doesn't want to go to college right now. Still working on convincing her. She still hasn't gained and her nausea is much worse. She feeds during the day and at night. When we get back home we have to speak with her doctor about retesting for the gastroparesis again to see if it is worse and consider a J tube.


----------



## Maya142

M took a year off between high school and college to get her health under control. That helped. No harm in waiting till she is feeling better.

I would guess with her Gastroparesis, the G tube feeds aren't helping at all. M would just throw them up.

A GJ is easy to switch to - interventional radiology will do it - no extra surgery. Most kids do well with GJ tubes. It does require sedation (usually conscious sedation) to place, but it's generally not too bad.

A separate J tube would be a last resort if the GJ tube does not work. That would additional surgery and that's not quite as easy to recover from.

But for MANY kids, GJ tubes work very well.


----------



## kimmidwife

Thanks Maya. It is confusing knowing about the different tubes. Caitlyn took this past year off so I am hoping she will feel well enough to start at least a few classes. She will be working one day a week at a small theatre teaching kids. She did it last year and loved it.


----------



## Maya142

That's great!! Keeping busy really helps M - takes her mind of the pain. It's one of the things we learned at the pain program - keep things as normal as possible.

 It doesn't matter if she starts small - even one class or a couple days volunteering - that will help her feel like she can do "normal" things and live a normal life.

I hope your GI is able to figure out her Gastroparesis and will allow you to try a GJ tube. It's the natural next step, if G tube feeds do not work. The tube (the button) is very similar except that there are two ports, so it's a little bigger. But otherwise, it's pretty much the same.

It worked MUCH better for M. With G tube feeds, she'd throw up with even 20 mL/hr which is a VERY slow rate. 

When she had her NJ/GJ tube, we were able to go all the way up to 100 mL/hr, which meant we could easily give her 2000 calories during the day, plus 300-400 by mouth. That really helped her gain weight. Her GI and dietician were surprised to learn how much she needed to actually gain weight - they hadn't expected her to need 2400 calories, because she is so small.


----------



## kimmidwife

Trying not to freak out. We noticed a swollen lymph node in the top of the groin area. How worried should we be about this?
Caitlyn is on Stelara and methotrexate.


----------



## my little penguin

Is it more than 1 cm ?
Any signs of cold or infection past few weeks?
Any scratches from cats within the past few weeks /months ?
Lasting more than a week ?

Please let her pcp know 
They will measure it 
Then depending will imaging it and do blood tests 

The majority are from viral infections


----------



## kimmidwife

Probably about 2cms. No colds in the past two weeks. We don't have cats or go near them as I am very allergic.
We are not near any of our doctors for another month, I will call the GI tomorrow just to see what they say.


----------



## my little penguin

GI doesn't handle it ...but good to let them know 
But pcp handles it at first  and then infectious disease handle swollen lump nodes if they haven't gone down on their own within 1-2 weeks 

Ds had one that kept growing in his neck 
Was not cancerous or infectious


----------



## Maya142

I would let both your pediatrician and GI know. If you're not at home, it might mean an urgent care trip. 

Sending hugs!!


----------



## kimmidwife

Thanks MLP and Maya!


----------



## DanceMom

Swollen lymph nodes has been a chronic problem for A. Most docs aren't concerned unless it is red or warm, indicating an infection....or has been enlarged for more than 2 weeks. Odds are her body is just fighting something.


----------



## my little penguin

Wanted to add
Was the lymph node suddenly large 
Versus growing slowly 
We were told suddenly
Enlarged lymph nodes is less likely to be lymphoma 
And the lymphoma grows very slowly
Lymphoma is the big concern for kids with Crohns on immunosuppressants and biologics 
Simple blood tests also can confirm whether lymphoma is still a concern. 
Ds went from having nothing to the next day looking like a golf ball had been placed under his skin on his neck 

If the lymph node stays for more than 1-2 weeks then infectious disease is the next step
Due to the immunosuppressants/biologics taken
They will run more blood work for infectious causes 
If those are negative then detailed ultrasounds of the lymph node to again confirm it's not cancerous with a trial of oral antibiotics 
They will also request a quantiferon gold blood test (more accurate tb  test )
If all of those are negative
They will offer to do a fine needle biopsy vs excisional biopsy 
Fine needle biopsy uses ultrasound and a needle 
Pros -very easy /can tell if there is abscess
Cons-no real data can be obtained from the needle biopsy (useless) 

They may also do at least 48 hours of iv abx to try to shrink the lymph nodes 

Last resort is excisional biopsy (surgically removing the lymph node)
This isn't done until you have had iv abx at least 
Excisional biopsy is definitive for whether it's cancerous or infection
In Ds case it confirmed that his was neither infection related (despite being told for over a month it was "just a virus" ) OR cancerous 
His was confirmed to be evidence of another autoimmune disease process in progress

Remember it's your kiddo and go with your gut


----------



## kimmidwife

MLP,
It was a sudden enlargement and it seems to be shrinking already. I am going to check it this morning and depending on how it looks call the doctor.


----------



## my little penguin

That's great news!!!!
Hope it continues to shrink to nothing


----------



## kimmidwife

I hope so! The doctor of course never called back.


----------



## kimmidwife

Finally spoke with the doctor today about the lymph node. It was not our doctor but someone else in the practice. He basically blew me off. 
Meanwhile her stomach pain when eating solids is very bad again and her nausea is horrible as well.
Why can't my baby catch a break?


----------



## Maya142

That sounds like Gastroparesis Kim. Is she on a motility medication? Has she ever tried Domperidone? It made a HUGE difference for my daughter. She went from relying completely on tube feeds to being able to eat 4 small meals! 

There is also Erythromycin - we had some success with that for a while.

How much food is she eating and how much formula is she getting through the tube? Does she have nausea with feeds?

Have you considered switching GIs to an adult GI at a university hospital? It sounds like Caitlyn needs specialized care - she is complex.


----------



## kimmidwife

Hi Maya,
 unfortunately Erythromycin didn't work for her and she started having side effects almost immediately from the domperidone which freaked her out and she didn't want to continue with it.
I am trying and trying to get her in to see the motility team in Ohio again. Her doctor has to send a letter for them to see them again and he is away right now.
Ugh!!! Why is it always something?


----------



## my little penguin

Hugs
Was the erythromycin (ees)?
Ees granules seemed to work well for ds
Eryped did not work for him at all
What dose was she on?
They can go up to 200 mg -30 minutes prior meals

What are her meals like ?
For ds he has a fat level limit and fiber limit 
If either is too high then he won't be able to eat at all

How long between meals ?
How many calories at a meal ?

Even with ees Ds has to really space out solid meals and can't eat more than 300-400 calories per meal


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## Maya142

We actually had the same experience - EES granules worked well, Eryped worked but not as well. We also found the pill form was no help and the liquid form (either of the liquid forms, though EES was better) worked better.

What side effects did she have with Domperidone? At first my daughter had diarrhea, but it went away. She is monitored carefully for cardiac side effects. What dose was she on?

We get Domperidone tablets and were able to cut them so she was taking 5 mg at every meal first. Now she is taking the adult dose, 10 mg, since she has gained weight. No side effects at all.

There is also Reglan, though we were too nervous to try that.

There are also botox injections - our GI was considering that for M.

Can she really limit her solid food and go to mostly tube feeds? That's what my daughter had to do when her GP was really bad. We did about 85% formula and 15% food. The food was low fat, low fiber. VERY small meals at first - 200 calories.

Now she can eat about 400 calories at once.

As she gained weight and became less malnourished, her GI tract started working better. Her stomach got more used to food and she became able to eat more. It was a long process though, especially since she had been underweight and severely malnourished for a very long time.

I would say it took 8 months or so to really recover AFTER she got an NJ tube and started gaining weight.

That's when GP became much less severe and she was able to eat more.


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## kimmidwife

Maya,
She is doing about 85% formula and 15% food. She eats tiny Amounts at dinner and the rest of the day is on the formula and overnight. She can't tolerate more then four cans a day.
At this point we have tried everything even the Reglan. She started having really bad stomach pain again the past few days also which had been a little better. 
We have done the erythromycin liquid, Reglan, and domperidone.
We are trying to get back in to the motility specialist in Ohio again. I am at my wits end.


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## Maya142

Botox may be a good option for her. It was suggested for M once - we never did it because at that point she was so underweight that it was clear she needed a tube. Once she put weight on, her GP got better as her body was no longer in starvation mode and got more used to tolerating food.

Or you could go to a GJ tube, so at least her stomach would get much less liquid in it. That way, only the food she eats would go through her stomach and the formula would bypass it entirely.

It wouldn't eliminate her symptoms with food, but it may help with the formula.

A GJ tube is a relatively easy switch - just done in interventional radiology. It's usually done with sedation so it's not too hard on the kiddo. It's such an easy switch that I'm kind of wondering why your GI hasn't tried it. It's pretty standard for a kid with Gastroparesis to get a GJ tube if a G tube is not working.

The other option would be a gastric pacemaker. That is a last resort usually, since it's a surgery.

I would definitely get her back to a motility specialist as soon as possible.


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## kimmidwife

Saw a wonderful pediatrician today who it just so happens she did her residency where I used to work at Mt. Sinai Hospital in Manhatten and I knew her!
Anyway she is not concerned about the lymph node. She thinks it is from shaving. We justbneed to continue to watch it and make sure it doesn't get bigger or red or inflamed.
Her little sister however who I brought in as well because she has had a night cough has mycoplasma pneumonia. I was not expecting that at all.
If it's not one thing it's another.
I called the on call GI and he said to hold the Humira which she was due for tonight for one week. As long as she is better next Sunday she can have it then.


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## Maya142

Kim, now that you mention it, one of my girls had that too from shaving. Under her arms. Her lymph node was nowhere near as big as Caitlyn's was, but it was enlarged. I forgot all about that - it was years ago. My daughter was on Humira at the time, which was what got us sent to the pediatrician in the first place.

Anyway, it went away and didn't come back.

Hope your little one feels better soon!


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## pdx

kimmidwife said:


> Her little sister however who I brought in as well because she has had a night cough has mycoplasma pneumonia. I was not expecting that at all.
> If it's not one thing it's another.
> I called the on call GI and he said to hold the Humira which she was due for tonight for one week. As long as she is better next Sunday she can have it then.


Kim, how is your younger daughter doing? And is Caitlyn feeling any better?


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## kimmidwife

PDX,Thanks for asking,
My younger daughter is much better but still has a slight cough. I am putting the Humira off a couple more days. Planning to give it to her Wednesday. Fingers crossed that she is 100% by then.
Caitlyn is not doing well at all. I am not sure the Stelara is working. She is having so much stomach pain. Praying we can get in with the motility specialist soon.


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## pdx

Glad that your younger daughter is doing better, but so sorry to hear that Caitlyn is still in so much pain. :ghug:


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## Optimistic

kimmidwife said:


> PDX,Thanks for asking,
> My younger daughter is much better but still has a slight cough. I am putting the Humira off a couple more days. Planning to give it to her Wednesday. Fingers crossed that she is 100% by then.
> Caitlyn is not doing well at all. I am not sure the Stelara is working. She is having so much stomach pain. Praying we can get in with the motility specialist soon.


I'll join in for that prayer!. I hope you get the call for appointment soon. I can't imagine the daily pain she lives with.


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## Maya142

Fingers crossed for you. Poor Caitlyn. Gastroparesis can be so miserable.

Can her GI switch her to a GJ tube while you're waiting for an appt. with the motility specialist? That might help a little and it's a pretty easy switch.


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## richard1353

I am sorry to hear that your daughter was still in the stomach pain. I hope them soon in remission!


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## kimmidwife

Still no appt. she has been having worse and worse pain. I am just so fed up.
Maya,
We aren't back home yet but if we don't see the doctor in Ohio before we get home we will discuss that with her doctor.


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## kimmidwife

Caitlyn has been having worse and worse nausea. I called the on call Physcian at Nationwide. She was super nice and we talked for a while. She is going to speak with the motility team tomorrow about Caitlyn. She also told me their first move would probably be to change her G tube to a J tube which is what we have been saying to her doctor but of course they can't say for sure until they see her.
I hope everyone is having a good Labor Day weekend.


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## kimmidwife

Caitlyn is in the hospital again. Her doctor is not sure why she is having so much pain. Looks like she is going to be having scopes, MRE, and another gastric emptying scan.


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## pdx

So sorry to hear this, Kim. Hope the tests give you some answers.


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## Farmwife

Sorry to hear this Kim. 
Hopefully they can ease her pain. 
Grace just started pain management again. 
Hold on there.  
Your all in my prayers.


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## richard1353

Hope everything be better!


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## Jmrogers4

Sorry Kim, hope they can get the pain figured out and she gets some relief.


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## Optimistic

How is Caitlin today?


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## Clash

Just checked in and I'm so sorry to hear all Caitlyn is going through. I hope things improve for her quickly! Thoughts and prayers.


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## kimmidwife

They have done a bunch of tests. The good news is the Stelara seems to be working. The bad news is the doctor thinks she has amplified pain syndrome from her gut being inflamed for so long. We are still waiting for the biopsies from the scopes (expected to come back in a week or so and the MRE results from today.
If that looks good she will come home tomorrow. The doctor wants us to look at taking her to one of those inpatient chronic pain rehab programs.
I am just so tried and worn out. Why can't she catch a break?


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## Maya142

Sending big hugs Kim. It is so tough. We had the same sort of experience with M's AS. It was uncontrolled for so long that she developed amplified pain syndrome.

She was in so much pain that she wasn't sleeping - would lie awake till 5 am in the morning. She was unable to go to school (missed a LOT of school in high school and withdrew 3 weeks into her first semester in college), unable to do stuff with her friends, unable to play sports (she had been a very active soccer player) -- she was pretty much debilitated by the pain and as she used to put it, she "didn't have a life," she had "a series of never-ending medical appointments."

You can imagine that we were both exhausted and desperate by the time we got to the pain program. But it really was life-changing for her.

We had spent YEARS working on her sleep - trying to get her to fall asleep on time and wake up on time. She just couldn't sleep, because of pain. We tried EVERYTHING - even addictive sleep medication. 

After 3 days at the program, she was sleeping through the night and falling asleep in 20 minutes, instead of lying awake for 5-6 hours. No meds.

There are lots of other examples - she gained a lot of confidence, she learned how to cope with pain and how to use the tools she learned there to deal with pain once we got home. She was able to reduce her pain meds after the program.

The programs are really wonderful - they aim to teach the child AND the parent how to live WELL with chronic pain - how to enjoy life, despite the pain. M really learned a lot. And I also learned a lot. 

Anyway, hope you can get her into a program ASAP. There are usually waiting lists, but the length depends on the center.

I know it sounds scary to be dealing with one more thing, but it's really actually GOOD news that Stelara is working for Caitlyn. Hang in there!


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## Farmwife

Grace also went to an impatient rehab. She actually ended up in a wheelchair and bedridden for months. 
I get the tired feeling, Kim. 
I was there also. 
But the pain program was the best and its now the same doc that heads her team. He is the one the dx EDS. 
They sadly see allot of patients with eds.
If your girl has it,  it might be a good place. 
AMPS and EDS often go hand in hand.


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## Optimistic

How is Caitlin?

I wish I lived in your city so I could come give you a break for a nap or whatever you need. Or maybe even attempt to help homeschool your other kids for you one day? 

Sorry. This has to turn around for her and you.


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## kimmidwife

Hi Optimistic,
She is not doing great but the good news is we have an appt already for the eval for the pain program, they are moving on it very fast. All her doctors are working together to her her in to it which is nice. After the eval they said it will take two to four weeks for a date to get her in. Fingers crossed that it all goes smoothly.


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## my little penguin

Good luck Ds started a pain program as well
His rheumo changed things at the same time as when we were to start and Ds GI pain went away 
But the program ideas /tools were great and we still use those tools 
Especially exercise when he hurts


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## Maya142

Fingers and toes crossed!! It is a LOT of activity in the beginning but they try really hard to make it fun for the kids. It's about 4 hours of exercise - PT/OT, aqua therapy and some sort of group activity a day. Plus they get a home exercise program which they are supposed to do at night. 

M was completely exhausted after the first few days, but it was a "good" exhausted - it had been so long since she was able to function normally and do stuff! 

These programs are really incredible. It was life-changing for M.


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## Farmwife

I'm glad she got in. 
Do you know if they will let you be there? 
Or do you plan on going in the evenings? 
Grace was young so I had to be near (actually I would have been anyway).


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## Maya142

If it's the Cleveland program, parents have to be there. The kiddo will be inpatient (parent cannot stay the night with them) but there are sessions for parents during the day and visiting time every evening.


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## kimmidwife

Our appt today with the Cleveland clinic in Ohio at the chronic pain rehab programs did not go well. Firstly they told us they never got her records even when I called last week they said they got them. Then they said due to her low weight and the fact she is on a feeding tube during the day they don’t think she can do the program.
I am so pissed off. We flew there and wasted all that time. Even if they didn’t get her records we filled out an extensive questionnaire so they knew about her weight and the feeding tube before we ever went.


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## pdx

That is awful! So sorry...


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## Maya142

We had the same issues - M was too underweight for the program. It took a total of 1.5 years of tube feeding before we were able to get her weight up enough for her to do the program. 

It took such a long time because she hadn't been diagnosed with Gastroparesis, so we wasted a lot of time trying an NG tube when she could not tolerate NG feeds.

But once we got her an NJ tube and then a GJ tube, she gained weight quite quickly. We started off with tube feeding during the day, but once she was a healthy weight and had gained enough, we switched to overnight feeds.

She was still on overnight feeds when we did the program.

Her BMI had to be 18.5 before they'd let her do the program - she had to be in the "normal weight" zone. Her BMI was 15 or lower during her worst time, when she was roughly 80 lbs, and there is NO way she could have done the program in that shape. It is a LOT of physical activity - 4 hours a day. The kids are constantly busy and their bodies have to be well enough to keep up.

I would focus on getting weight on her and then revisit the pain program. Any pain program will have similar rules about being underweight. 

It was very frustrating for us because we KNEW she needed to do the program, but honestly, I'm glad they made us wait because then M was well enough to successfully complete the program and benefit from it.


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## kimmidwife

I haven’t updated on Caitlyn in a bit. She is going to have an evaluation at the program for pain in NJ. There was a lot of back and forth between her doctors and them and they finally decided they think she can do the program.
I am glad they seemed to have reviewed everything really thoroughly.
She has also developed a new issue with her back.
She is scheduled for an MRI next week and had a CT scan that showed a kidney stone but the stone is small and nonobstructing so shouldn’t be causing her ack pain.
The ortho is worried that it could be a disc or something.
Will update more when we have some more answers.


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## Maya142

Where is the back pain, Kim?  Does it get worse with sitting or rest and better with movement? Does she have stiffness, particularly in the morning or after sitting a long time?

I would see a rheumatologist if the ortho cannot figure it out.

Really glad the pain program in NJ will let her do it!! Has she gained any weight yet? It is a LOT of activity and exercise, so it's the best for her to have a "cushion" just in case she loses a few pounds.

We were told M's BMI had to be at least 18.5 or she could not do the program.

While she was doing the program, she began to feel better, eat more and rely less on her tube!


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## kimmidwife

Maya,
She has gained two pounds since the tube was placed. The pain is in her lower back and radiates upward. It seems to get worse as the day goes on but she does wake up with it. It hurts worse when moving or standing up.
The ortho said if he doesn’t find anything he will send us to rheum. But I am not sure how much more they can help as she is on Stelara which is already a TNF blocker.
Forgot to add she is also going to start back at aquatherapy and PT.


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## my little penguin

Stelara is IL 12/IL 23 
It is not anti tnf blocker 
It is hit or miss for SpA 
Ds takes Stelara plus mtx plus ivig for his Crohns and arthritis 

So she may still have SpA


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## Maya142

She could certainly have SpA. They can do lots of things - they can add MTX or if she is already on it, up the dose. Same with Stelara - they can up the dose or frequency. They can add Celebrex, though that is risky considering her Crohn's history.

PT and aquatherapy are GREAT and should certainly help with pain. But like with Crohn's, if there is inflammation it needs to be controlled or it will progress. You certainly do not want more spinal or joint involvement.

It doesn't sound like typical SpA but could be. I would get it checked out.

Do they know why she has only gained 2 lbs? My daughter gained a LOT more with the tube - over 25 lbs. Maybe she isn't getting enough calories? Or needs an elemental formula to absorb better?


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## kimmidwife

Hi Everyone,
I haven’t updated in a few weeks.
 Caitlyn went to be evaluated for the inpatient program at Children’s specialized hospital in NJ.
They at first were hesitant because of her G tube but then they had a long conversation with her pain management doctor who spoke with their head doctor and they called us to have her come for the evaluation.
They accepted her. Now we are just waiting for them to finalize the insurance and have an opening for her.
The facility is beautiful and everyone seems super nice.
Caitlyn really liked it and is excited to do it.
Caitlyn’s back pain is doing better but she is having a lot of pain with eating again and with her G tube feeds.
Hopefully the program will help!!!!


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## Maya142

Was her back pain ever checked out by a rheumatologist?

Really glad they will take her!! I hope they can get her in quickly.


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## kimmidwife

Maya,
We didn’t go back yet to the rheumy.


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## kimmidwife

Hi All!
We had a really productive appt with the GI doctor today. He agreed to change her to-a GJ tube. He agreed she should have a visit with an endocrinologist and he is going to try and help in way needed to get Caitlyn into the pain program.


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## crohnsinct

WAIT!  I thought she was already accepted into the pain program.  Did I fall asleep at the switch again?


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## Farmwife

I think because they were waiting for a spot to open up for her in the pain rehab,  CIC.
Hopefully the doc can get her in sooner, Kim. 
Grace's stay made a world of difference.


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## kimmidwife

FW and CIC,
I don’t know if I posted about it there was a hiccup with her acceptance. One of the team members wanted a letter from her GI doctor and psychologist that she doesn’t have an eating disorder because in the past they had two kids with G tubes who has underlying eating disorders.
The doctors and therapists that saw Caitlyn don’t think she has one in any way but this one person on the team is inisiting it is ruled out.
Her GI is writing  a letter and so is the psychologist she saw in the hospital.
Just another headache for me to deal with.


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## crohnsinct

Oh, o.k. well that seems easy enough. Are the GI and psych good with follow up?


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## Farmwife

Always something.  Hugs


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## my little penguin

So confused 
Doesn’t she already have a dx if gastroparesis which explains her low weight 
Prior to the g tube 
Didn’t her weight go up woth formula and gastroparesis meds ...
And her medical records should reflect 

If they don’t then you need to chat with her GI asap


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## kimmidwife

Yes to all that MLP. It is just crazy. Hopefully the letters are being sent today.


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## Maya142

We have found pain programs tend to be a little crazy about weight...it was VERY frustrating. It took M over a year to gain the weight necessary (but only 4 months or so after she got a tube) and keep it on long enough before they would take her.

It is a lot of exercise and activity and I understand why they are like that, but it was still very frustrating.

We also got the "Why doesn't she just EAT?" question despite a Gastroparesis dx and Crohn's dx :ybatty:.


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## kimmidwife

Both doctors sent the letters. Now have to wait for the team to meet again.


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## kimmidwife

Caitlyn was accepted and started the pain program today, it has been a whirlwind and all happened over the last few days.


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## Maya142

Good luck Caitlyn!! We are rooting for her!!

M says the first few days were the toughest. Every week got easier and by the last week she did not want to leave!


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## kimmidwife

Maya,
She is exhausted! But all is good so far!


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## Farmwife

Yes, the first week we were warned there would be a lot of ups and downs.
Than  we were warned that week  3 was the hardest on patients and their families
because the pent up feeling and loneliness would hit.


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## kimmidwife

FW,
Thanks! I hope she is okay. She texted me on her break.


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## Jmrogers4

Hope it works wonders for her


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## CarolinAlaska

I'm so glad for her.  I really pray this makes a world of a difference for Caitlyn.


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## kimmidwife

Sooo she finished the pain program and was doing really great back at home for almost two weeks. Then suddenly Saturday she began having severe pain again. We found the figure out why but now think it could possibly be cdiff again.
When she was in the rehab they gave her clindamycin because her GJ tube got a skin infection around it.
They didn’t call the GI to consult who would have told them not to give her clindamycin which is the highest risk for cdiff!


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## pdx

Oh no--really hope it's not cdiff. I'm glad that the pain program helped, and hopefully the current pain will be short-lived.


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## crohnsinct

Ugh!  I hope it isn't c diff but at least it would be an explanation...but just ugh!  

Have you pursued fecal transplant for the recurrent c diff?


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## Maya142

Hasn't Caitlyn had a fecal transplant already?? I may be confusing her with someone else but through an NJ tube?

Hope they can get to the bottom of her pain SOON.


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