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Crohn's Disease Forum » Parents of Kids with IBD » Just realized it has been 7.5 years since diagnosis!


 
01-17-2017, 05:32 PM   #241
kimmidwife
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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.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-17-2017, 05:52 PM   #242
Maya142
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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!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-17-2017, 10:24 PM   #243
kimmidwife
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I am sorry to hear Maya. It seems like our girls are a lot alike.
01-17-2017, 10:58 PM   #244
Maya142
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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 .
01-17-2017, 11:04 PM   #245
vtfamily
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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
01-18-2017, 12:15 PM   #246
kimmidwife
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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.
01-18-2017, 03:22 PM   #247
Tesscorm
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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!

Maya - good luck with Entyvio!!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-18-2017, 04:10 PM   #248
pdx
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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.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-19-2017, 09:53 AM   #249
CarolinAlaska
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Oh no, Kim. Your daughter is suffering such a rough patch right now. The storm is worst before the end, right?
01-19-2017, 10:53 AM   #250
kimmidwife
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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.
01-25-2017, 08:59 PM   #251
kimmidwife
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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.
01-25-2017, 09:33 PM   #252
pdx
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Hope that Stelara works really well for her. Cdiff can cause pain, right? Maybe she's still fighting that?
01-25-2017, 10:05 PM   #253
Maya142
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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 .
01-26-2017, 03:23 PM   #254
Tesscorm
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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?
01-28-2017, 12:24 PM   #255
CarolinAlaska
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Is her pain worse with menses?
01-30-2017, 10:45 PM   #256
kimmidwife
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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.
01-31-2017, 02:26 AM   #257
Sascot
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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
02-23-2017, 12:10 PM   #258
kimmidwife
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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.
03-15-2017, 06:23 PM   #259
kimmidwife
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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.
03-15-2017, 06:29 PM   #260
kimmidwife
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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.
03-15-2017, 06:40 PM   #261
Maya142
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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.
03-15-2017, 08:56 PM   #262
Clash
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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!
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-16-2017, 09:51 AM   #263
kimmidwife
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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.
03-16-2017, 10:06 AM   #264
Farmwife
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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-in...lassification/

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
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-13-2017, 07:51 PM   #265
kimmidwife
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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.
04-13-2017, 08:32 PM   #266
Farmwife
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Oh Kim
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.
04-13-2017, 09:30 PM   #267
Maya142
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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.
04-13-2017, 10:37 PM   #268
kimmidwife
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Thanks Maya and FW,
I am going to look at that site Tomorrow. Caitlyn has been looking at it.
04-13-2017, 10:56 PM   #269
pdx
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I really hope that Stelara works well for her, Kim. Wishing for good health for your whole family.
04-13-2017, 11:07 PM   #270
Maya142
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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.
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