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


 
04-14-2017, 06:36 PM   #271
kimmidwife
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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.
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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.
04-18-2017, 09:50 PM   #272
kimmidwife
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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?
😓😓😓😓
04-18-2017, 10:06 PM   #273
Maya142
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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!!
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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
04-19-2017, 12:25 AM   #274
pdx
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Hope the surgery goes well--I'll be thinking of you all on Thursday.
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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
04-19-2017, 10:09 AM   #275
Tesscorm
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Good luck on Thursday! I do hope this will help in getting Caitlyn feeling better (and lessening some of your worry)!

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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
04-19-2017, 11:36 AM   #276
Clash
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Sending hugs! I hope the surgery helps her to gain the weight back!
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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
04-19-2017, 12:06 PM   #277
Farmwife
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I hope it goes well.
Grace hated the ng tube but loves her gtube.
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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
04-19-2017, 04:47 PM   #278
Mehita
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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!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-20-2017, 02:27 PM   #279
kimmidwife
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Surgery is done. We are in a room. She is doing okay right now.
04-20-2017, 03:21 PM   #280
Optimistic
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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.
04-20-2017, 03:26 PM   #281
Maya142
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Fingers crossed for an easy recovery and a quiet, boring night!! Very glad Caitlyn is doing ok after the surgery.
04-20-2017, 03:30 PM   #282
pdx
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Thanks for the update. Hope that recovery is quick and easy.
04-21-2017, 07:19 PM   #283
kimmidwife
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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.
04-21-2017, 07:25 PM   #284
Maya142
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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.
04-21-2017, 09:09 PM   #285
pdx
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Wishing you a better night tonight. Are you still in the hospital?
04-22-2017, 02:26 PM   #286
Maya142
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How's Caitlyn doing? Any better?
04-24-2017, 09:11 PM   #287
Farmwife
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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
04-24-2017, 10:01 PM   #288
kimmidwife
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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.
04-24-2017, 10:08 PM   #289
Maya142
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Glad Caitlyn is feeling better. Poor kiddo - she has had a REALLY tough time. Fingers crossed that she gets better soon.
04-25-2017, 08:55 AM   #290
Farmwife
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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?
04-27-2017, 11:06 AM   #291
kimmidwife
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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.
04-27-2017, 01:35 PM   #292
Maya142
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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.
04-27-2017, 08:01 PM   #293
kimmidwife
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Thanks Maya!
06-20-2017, 07:43 PM   #294
kimmidwife
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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.
06-20-2017, 08:14 PM   #295
Maya142
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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.
06-20-2017, 10:33 PM   #296
my little penguin
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Non h pylori gastritis here as well
Glad the tube went well and Stelera is working
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06-22-2017, 11:59 PM   #297
kimmidwife
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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.
06-23-2017, 12:13 AM   #298
Maya142
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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?
06-25-2017, 10:09 PM   #299
kimmidwife
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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.
06-25-2017, 10:23 PM   #300
Maya142
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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.
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