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Just realized it has been 7.5 years since diagnosis!

kimmidwife

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.
 
kimmidwife

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.
 
Sascot

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.
 
Clash

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.
 
kimmidwife

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.
 
M

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!!
 
kimmidwife

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.
 
pdx

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?
 
Tesscorm

Tesscorm

Moderator
Staff member
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. :(
 
kimmidwife

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.
 
kimmidwife

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.
 
Optimistic

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.
 
kimmidwife

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.
 
pdx

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.
 
kimmidwife

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.
 
CarolinAlaska

CarolinAlaska

Holding It Together
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.
 
kimmidwife

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.
 
kimmidwife

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.
 
kimmidwife

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.
 
Maya142

Maya142

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

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!
 
kimmidwife

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.
 
kimmidwife

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

pdx

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

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

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

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

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!
 
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D

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

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!!!
 
kimmidwife

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

CarolinAlaska

Holding It Together
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

CarolinAlaska

Holding It Together
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.
Click to expand...
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

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.
 
kimmidwife

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!
 
kimmidwife

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

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?
 
D

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.
 
Tesscorm

Tesscorm

Moderator
Staff member
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

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.
 
kimmidwife

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

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

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!!!!
Click to expand...
Best to you and her
 
kimmidwife

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

Maya142

Moderator
Staff member
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.
 
my little penguin

my little penguin

Moderator
Staff member
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

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

my little penguin

Moderator
Staff member
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

Maya142

Moderator
Staff member
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

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?
 
Maya142

Maya142

Moderator
Staff member
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

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

CarolinAlaska

Holding It Together
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

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.
 
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Maya142

Maya142

Moderator
Staff member
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?
 
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