Just realized it has been 7.5 years since diagnosis!

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kimmidwife

kimmidwife

Joined
Sep 19, 2010
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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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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?
 
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!)
 
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:
 
So sorry both of your kiddos have to deal with this dreadful disease!!

Hopefully 2016 will be the year of the cure!!
 
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!
 
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.
 
Really sorry to hear that, very frustrating if they can't guarantee the surgery would fix it.
 
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.
 
Amen to that. We definitely need a cure soon. Hugs to you and your girls. I hope this year is awesome for you guys!!
 
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.
Click to expand...
I hope everyone is doing fine soon.
 
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.
 
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.
 
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.
Click to expand...
Best to jer
 
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.
Click to expand...

I hope the new antibiotic works.
 
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.
 
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?
 
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!
 
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.
 
Oh no, no wonder she is miserable! I hope Vancomycin kicks in quickly and Caitlyn feels better SOON!
 
ugh! Poor Caitlyn! How many times has she had cliff now? At what point do they consider fecal transplant?
 
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.
 
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.
 
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!
 
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:
 
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.
 
Fantastic raising that money and completing the marathon. Sounds like a good day. Hope she feels better once she gets the Entvyio
 
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.
 
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.
 
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.
 
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:
 
I agree with Tesscorm. Infact, our GI allows us to email him directly. And he responds as soon as he can.
 
We have no electronic options at our GI's office. They never called back either, like I suspected.
 
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.
 
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.
 
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:
 
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.
 
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.
 
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:.
 
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.
 
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!
 
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?
 
Any progress on the pain rehab program Kim? Really sorry to hear Caitlyn is in a lot of pain again :(.
 
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.
 
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.
 
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. 😓
 
Forgot to say we are still waiting for both girls fecal calprotectin results. They were still pending today.
 
How are you doing, momma? That's a lot of stuff going on. Are you taking breaks, taking care of you?
 
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.
 
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!!!!
 
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
 
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.
 
Hope the prep and scopes go well. And great to hear that her sister's FC is down.
 
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!
 
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.
 
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.
 
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:
 
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.
 
Sorry things didn't go great! Really hope the surgery makes a big difference for her pain levels. Thinking of you both.
 
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:
 
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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