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


 
06-26-2017, 08:24 PM   #301
Farmwife
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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?
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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 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
06-29-2017, 06:01 PM   #302
kimmidwife
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Hi FW,
Caitlyn has the Mickey and is having a lot of issues. I am also sick as a dog.
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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.
06-29-2017, 06:19 PM   #303
Maya142
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What's going on with her tube? Anything we can help with? How is she feeling - any better on Stelara?
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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
06-29-2017, 06:50 PM   #304
Farmwife
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Yes, what issues?
I'm sure Maya and I can write a whole list of issues with tubes. Lol
07-02-2017, 10:32 PM   #305
kimmidwife
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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.
07-02-2017, 11:01 PM   #306
Maya142
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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.
07-02-2017, 11:02 PM   #307
Maya142
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If you look here, there are some tips for dealing with granulation tissue:

http://www.feedingtubeawareness.org/...lation-tissue/
07-03-2017, 08:20 PM   #308
kimmidwife
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Thanks Maya!!!
07-03-2017, 08:23 PM   #309
Maya142
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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 .
07-04-2017, 09:27 PM   #310
Farmwife
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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.
07-17-2017, 09:20 PM   #311
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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.
07-17-2017, 09:25 PM   #312
Maya142
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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.
07-17-2017, 09:26 PM   #313
Maya142
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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.
07-23-2017, 07:22 PM   #314
kimmidwife
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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.
07-23-2017, 08:22 PM   #315
Maya142
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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?
07-23-2017, 09:29 PM   #316
kimmidwife
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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.
07-23-2017, 10:08 PM   #317
Maya142
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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.
07-24-2017, 09:01 AM   #318
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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.
07-24-2017, 02:18 PM   #319
Maya142
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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.
08-09-2017, 09:01 PM   #320
kimmidwife
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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.
08-09-2017, 09:19 PM   #321
my little penguin
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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
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08-09-2017, 09:41 PM   #322
kimmidwife
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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.
08-09-2017, 09:45 PM   #323
my little penguin
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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
08-09-2017, 09:50 PM   #324
Maya142
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I would let both your pediatrician and GI know. If you're not at home, it might mean an urgent care trip.

Sending hugs!!
08-09-2017, 11:23 PM   #325
kimmidwife
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Thanks MLP and Maya!
08-10-2017, 04:32 AM   #326
DanceMom
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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.
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A is 13

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
08-10-2017, 03:37 PM   #327
my little penguin
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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
08-11-2017, 10:37 AM   #328
kimmidwife
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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.
08-11-2017, 11:41 AM   #329
my little penguin
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That's great news!!!!
Hope it continues to shrink to nothing
08-11-2017, 04:41 PM   #330
kimmidwife
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I hope so! The doctor of course never called back. 😓
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Crohn's Disease Forum » Parents of Kids with IBD » Just realized it has been 7.5 years since diagnosis!
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