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Crohn's Disease Forum » Parents of Kids with IBD » Back after our Surgery


 
04-03-2014, 07:53 AM   #1
Brian'sMom
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Back after our Surgery

First I would like to say, Mayo in Minnesota is fantastic.
Brian had a loop ileostomy done. The surgeon took time to go inch by inch and look at every section of bowel. He went in thinking the terminal ileum would need to be taken out. But to the surprise of us all he felt it didn't need to come out. So we just did the ileostomy. Brian recovered really well. I think that's part that he's pretty tough, but also that the surgeon is good. The evening after the surgery he was eating goldfish!! First food (besides an occasional broth) in over 14 weeks!! The next day he had breakfast, lunch and dinner. (Small portions tho!) But before surgery he was having blood and cramps from broth. After.... No Pain at all! Brian is so happy. Right after surgery I could tell he was a little sad looking down at his stoma.... but within a day he was fine with it. He has taken ownership and he empties it himself. They had him changing the appliance all by himself. They cut his TPN way down. We came home with that for a week for the food transition to go smoothly.
Yesterday we got the picc line out!!!!

Plan is to stay on the same medicines and scope in 6 months. We will be doing that in Minnesota also.
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
04-03-2014, 07:58 AM   #2
Mehita
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What great news, Kathy!
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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
04-03-2014, 08:02 AM   #3
DustyKat
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So good to hear from you Kathy! And absolutely brilliant to hear that all went for Brian, what a champion!

I SO hope the stoma works wonders for his lower bowel, bless him.

Now I have to ask…what is a goldfish?! I assume he hasn’t raided the fish tank in the hospital foyer!

In awe of you lad.

Dusty. xxx
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04-03-2014, 08:05 AM   #4
Gmama
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Kathy so happy to see your update. You have to be so proud of your baby boy!
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Ginger
mom to LJ 16 (dx 12)
Prednisone 1-30-14 to 10-14
Current meds
Pentasa
Folic acid
Iron
Methotrexate
Back on Humira 8/22/14
Failed
Remicade 11/22/13-7/24/14
Flagyl/Cipro
Imuran
Humira 7/13-11/13)
Entocort
04-03-2014, 08:05 AM   #5
Sascot
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Glad things are going well
04-03-2014, 08:18 AM   #6
Mehita
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Dusty ... it's a cracker that is shaped like little goldfish. Kids love them!

http://www.pepperidgefarm.com/Produc...aspx?catID=722
04-03-2014, 08:30 AM   #7
DustyKat
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Thanks for that Mehita. I can now go to bed and sleep easy knowing that Brian isn’t condemning the hospital goldfish to the fate of Wanda.
04-03-2014, 08:41 AM   #8
Clash
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Such great news! Glad you all are home and things are on the upswing!
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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
04-03-2014, 09:19 AM   #9
Jane and Nick
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Well done both of you ! Our children are all heroes and Brian sounds like a super star.
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DOB 13/8/2001
Height 5ft 2" 48 kg
Salofalk x3 twice a day
Imuran 100mg
04-03-2014, 09:48 AM   #10
Jmrogers4
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Great Update! Glad things are improving. Jack just finished off an entire bag of goldfish last night, he has not had them in ages but we were at the store after baseball and he asked if he could get some. He started eating them in the store and by the time we got to check out 1/2 the bag was gone. It's so great to see and hear that these boys are eating!
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-03-2014, 09:58 AM   #11
Farmwife
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Why did you have to tell her Mehita
We could have had such fun convincing Dusty that Americans eat "gold fish".


I'm so glad Brain is doing better.
I was just thinking of trying to find a way to get Grace back to Mayo. Hugs
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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
04-03-2014, 11:14 AM   #12
Maya142
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So glad to hear that Brian is feeling better! I hope you guys get a LONG break from all of this
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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
04-03-2014, 04:37 PM   #13
Brian'sMom
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Now I have to ask…what is a goldfish?! I assume he hasn’t raided the fish tank in the hospital foyer!

In awe of you lad.

Dusty. xxx
Ha Ha Dusty!!! So funny!! Do fishtank goldfish have omega 6?!
04-03-2014, 04:41 PM   #14
Catherine
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I don't know about omega 6 in goldfish. But a diet of only goldfish kill turtles over time.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-03-2014, 04:46 PM   #15
DustyKat
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04-03-2014, 04:47 PM   #16
DustyKat
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I don't know about omega 6 in goldfish. But a diet of only goldfish kill turtles over time.
Yikes!…

04-04-2014, 12:28 AM   #17
Catherine
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Sadly only found this out after putting the turtles into pond with the goldfish. The turtles seen to be doing fine. Only fast goldfish left!!! Which breed!!!
04-04-2014, 10:01 AM   #18
Patricia56
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I can only imagine your relief and how Brian must be feeling. I am so glad Mayo was such a good experience.

All the best
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
04-04-2014, 10:47 AM   #19
araceli
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So glad to hear wonderful news.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
04-05-2014, 09:45 PM   #20
kimmidwife
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I am doing a happy dance for you guys! So glad to hear how well he is doing and how great mayo clinic was.
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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.
04-06-2014, 09:55 AM   #21
Brian'sMom
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Brian's appetite just continues to grow. He said its the first time he can eat and has no pain. He's hungry like a 14 yr old boy is supposed to be. This part makes the ileostomy easier for him to deal with. He actually doesn't seem to care much at all. I think he just knows this is where he was at with his crohns. Not really any other choice. I keep wondering what summer will be like. I've googled all kinds of things 'to swim in'. Brian just simply said, "I'll wear a swim shirt...I should anyways because I'm on Mtx and need to be careful of the sun". Boys...things so simple I guess!
04-06-2014, 01:21 PM   #22
my little penguin
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Good luck with the swimming
There are boys swim team like trunks that could be worn under regular trunks to hold it place.
http://m.speedousa.com/family/index....goryId=3173189
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04-06-2014, 06:10 PM   #23
kimmidwife
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Glad he continues to do well! That is such great news and he is taking it all in stride that is just fabulous!
04-06-2014, 06:30 PM   #24
Tesscorm
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Such a GREAT kid! I hope he continues to do really well!!
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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
04-06-2014, 07:50 PM   #25
AZMOM
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Kathy - The "in" thing here is to wear under armour or nike compression shorts under a looser board short. I'm sure those compression shorts would hold it for him if you don't want to spring for a Speedo! I'm so glad he's doing well.

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-06-2014, 07:54 PM   #26
my little penguin
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Swim outlet online has really cheap "jammers" since he would probably be hiding them anyways
04-06-2014, 09:56 PM   #27
awmom
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So glad to hear he is doing so well in body and spirits!!! You must also be breathing so much easier!
04-07-2014, 06:10 AM   #28
DustyKat
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What a brilliant update Kathy! It must fair make your heart sing to see him with a normal 14 y/o appetite and accepting of what needed to be done. He surely is an amazing young man.

Wishing you both all the luck in the world that the stoma does the trick!

Onwards and Upwards Brian!

Dusty. xxx
04-11-2014, 05:54 PM   #29
AZMOM
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Surfing the forum.....hoping yours is out riding his bike.

J.
04-18-2014, 05:51 PM   #30
Brian'sMom
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I hate to post this because I don't want to scare people. But I am because I want to stress how important regular labs are. And staying on top of things... and admitting our children when we need to is so important.
My son's aunt that was in her 30's also had IBD. She had Ulcerative Colitis. She had struggled like crazy. Did the 3 part surgery a few years back. Her final surgery to reconnect and form a j pouch was about a year ago. She could never get a hold of her diarrhea and she seemed to get worse. She also had c diff several times, and although she tested negative recently...she was worried she had a false negative. She also had pouchitis. Friday she collapsed and she stopped breathing. Her heart was fibrulating and they got it back but she went too long without oxygen and she had a lot of brain damage. She died on Monday when they took her off life support. It turns out that upon admission her potassium level was dangerously low. They think that is what caused her heart to get out of rhythm. And the levels got low due to all the extreme diarrhea. She also had a WBC of over 30... so she was pretty sick. So devastating. No one realized she was this sick. And I believe she didn't realize either. She lived with so many symptoms and I think she got used to feeling awful.
In lieu of flowers her parents asked for donations to CCFA. I thought that was sweet of them and That's good for all our kids too! CCFA Please find a CURE!!

Last edited by Brian'sMom; 04-20-2014 at 09:39 PM.
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