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02-01-2014, 08:39 AM   #1
Brian'sMom
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Hospital again

After a weekend of not being able to keep ng tube down an and previous elevated labs an mre was ordered for tues. Wednesday jan 29th we were admitted again. My son had lost 6 lbs in short time frame too. They put in pic line and he's been on tpn. We will be here til monday feb 3rd. Original plan was to go home with tpn for a week. Then back in for g tube placement and surgeon also look at terminal ileum. As you know if you've seen my other posts, i think he doesnt have TI symptoms. He only cramps when he stools and only vomits with hard painful cramps. But what do i know. I'm happy if it brings brian relief to remove ti. Surgeon stopped by end of day Friday. He spent about an hour with us. Wanted brians whole crohns life story. He had lots of questions. After he went over what he thinks he sees on mre. He said his TI is insignificant but rectum and sigmoid colon are like a lead pipe. Lots of thickening. I said, scarring? He said, oh yeah!! He said the small bowel loops look normal. He said if ti was scarred or narrowed those loops or at least right next to TI would be enlarged due to backup. Flow is good. He said brians issue in rectum is risky surgery. Because tissue planes are not there to easily cut thru (his will be like pages in a book with glue on them) he wont be able to see important things not to cut. Excuse the spelling but uratal, semen vesicles,and prostate. The inflammation will make tissue white and everything will bleed. He said big risk of leakage into pelvic cavity. He would need to remove sigmoid colon,rectum and part of descending. Attach that to rectal stub. He said this surgery is usually needed in rectal cancer patients and their tissue is ok. He doenst want to do g tube now cause he thinks the vomit is due to pain not gag reflex or nausea or ti. He asked if brian could live the way he is...put up with it. Brian told him how his life is at stand still. Cant do sports or play etc. And the pain is always there which affects his nutrition cause it hurts to even eat een. He wants us to go home and bowel rest. Then have him eat and see what happens. I asked him, what do you think will happen. He said, i think the same thing will happen. I said thats what weve been doing for two years! He's reluctant to do the surgery. I'm terrified now. He said, if it was successful brian would feel great. I was thinking last night, what if we do bowel rest then instead of having him eat and watch him decline again, take another look at rectum. Maybe some of the thickening isnt scarring but inflammation. Maybe surgery would be easier then. Fyi, mayo gi has been all about TI. We've asked and asked about stelera. He said he told us thats not avail yet. Hmmmm. I'm scared. Any knowledge from you all? Thanks
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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.
02-01-2014, 08:52 AM   #2
SupportiveMom
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Big hugs. I don't have much I can say in the way of suggestion but wanted to send my support. I hope you all are out on Monday with a good course of action. Our hope is to be out and home from the hospital too. Sending you support!

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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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02-01-2014, 09:11 AM   #3
Devynnsmom
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((((hugs))))
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
02-01-2014, 09:37 AM   #4
my little penguin
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Hugs
Can you take him to Boston or chop ?
Cincy has a world Renowned pediatric colorectal surgeons .

At least email them and ask for a phone consult?
Maybe getting a second/third opinon especially with recital surgery ...
It has been mentioned for DS more than once but that was for his inflamed prolapse .
If we ever decide to go with recital surgery - I would take him to Cincy for a consult and possible the surgery .


Never easy
Wishing you fast healing .

Have you pm izzi's mom about tacro ?
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DS - -Crohn's -Stelara
02-01-2014, 09:43 AM   #5
Farmwife
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I'll page in QueenGothel. She got her second opinion from Cincy for Rowan.

Before this mre when was his last scan of the rectum area? Was it normal then?
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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
02-01-2014, 09:58 AM   #6
Brian'sMom
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Oct. 2013 mre it Looked similar. March 2013 colonoscopy TI was ok but rectum was ulcerated
02-01-2014, 12:34 PM   #7
vtfamily
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Time to fight, right!

So few kids are on Stelara that it is pretty easy for one doc to contact another about how it is going. All I have to do is tell our GI doc the city of someone on here that is using Setlara and he knows who I am talking about.

True it isn't approved for Crohn's yet. But, Stelara is available and more and more insurance companies are approving it.

Praying for you both.
Cheryl VT
02-01-2014, 12:40 PM   #8
Gmama
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Brian's mom,
So sorry that you & Brian are going through all of this. Big hugs and prayers coming your way. Know that you are doing a great job (even when you are scared for him and unsure of what decision is the right one) You will be able to do what is best for him each step of the way. We are all here for you...even if you just need to vent!!
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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
02-01-2014, 12:43 PM   #9
crohnsinct
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Oh my goodness! Big hugs For you and our rock star

This is a huge decision and you owe it to yourself to cross every option and road off the list. I second MLP's suggestion of going straight to the best of the best. Also second the fight to get approval for other drugs. Sure it isn't approved in general but this is not your run of the mill case we are talking about. He is special...we owe it to the kid to do everything we can before we start slicing him with no idea of how things will turn out.

I will be praying for you both!
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
02-01-2014, 01:35 PM   #10
Patricia56
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Many hugs. It seems you are in a very hard place right now.

If the problems in the colon are due to scarring no amount of drugs will make a difference. And that is something I would have thought they could determine fairly easily through scopes and biopsies. Does the GI concur that the rectum through descending colon is heavily scarred?

If so then I think you should take courage in hand and explore the surgery option carefully with as good a 2nd or 3rd opinion as you can get - Cincy or CHOP sound promising. I don't know about connecting at the stump. I am under the impression that should not be done in CDers due to the risk of deterioration of the stump due to CD but I am certainly no expert.

Besides bowel rest via TPN it is possible to do a temporary diversion of stool from the colon. Maybe you could ask the docs if there would be any diagnostic or treatment value in trying that. Diagnostically it might clarify the TI vs colon debate. Treatment wise it will definitely rest his colon and hopefully clarify whether there's any inflammation there or if it's all really scarred.

I do know I've read many stories of kids (mostly UCers but CDers too) who have gotten their lives back after they had their colon removed. We can actually live pretty well without a colon.

I'm so sorry he is so miserable. But it sounds like you got a surgeon who is really willing to take the time to figure things out and who knows his limits - things you don't always find in a surgeon. Hopefully you are on the right track to finding answers that help.
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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.

Last edited by Patricia56; 02-01-2014 at 02:31 PM.
02-01-2014, 02:22 PM   #11
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So sorry your family and Brian have to go through all this. I can only offer you support and prayers.
Second opinions are good but sometimes leave you even more confused especially with Crohns.
02-01-2014, 02:52 PM   #12
DustyKat
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{MEGA HUGS} to you and your lad Kathy.

I am so, so sorry that you are having to deal with this.

I too agree with getting at least one more opinion as I think it is imperative that you know -how much is scar tissue
-how much is inflammation.

As your current consultant has already expressed concerns about the degree of difficulty involved with the surgery, then as mlp has suggested, it may be best to head to a top paediatric colorectal surgeon.

If there is a consensus that inflammation is also playing a role in this then I can well understand the desire to try something else first and judge just how much impact the inflammation was having on the problem. I hope Stelara is on the table if the inflammation course is taken.
Did you happen to ask about a temporary stoma Kathy? I can well understand if didn’t come up hun. The only thing to what watch for if this is an option is diversion colitis, which in turn can cause inflammation due to faecal matter not passing over the defunctionalised colon. Ugh!

Even if the surgeon is suggesting that going home and trying bowel rest will fail I can see where he is coming from Kathy. I can well remember the Crohn’s specialist saying to me in regard to Matt’s surgery…You know that Tony (the colorectal surgeon) will hate doing this. When I asked why he said…he is a wonderful surgeon and the outcome will be the best possible for Matt but he has no joy in operating on a young man such as your son, it saddens him that it is needed. In the scheme of things Matt’s surgery was ‘routine’ and he was older than Brian, so I can why the hesitancy to jump right in is there, resection surgery is forever.

Thinking of you both.

Dusty. xxx
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02-01-2014, 05:07 PM   #13
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I don't have any great advice, just wanted to send all my best. Hope you manage to find a solution you are happy with and that works well.
02-01-2014, 06:01 PM   #14
Maya142
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No advice but sending hugs. You and Brian and your family will be in my thoughts and prayers. Brian is such a trooper, I'm always so impressed by how mature he is when I read your posts!
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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
02-01-2014, 06:15 PM   #15
Jmrogers4
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No advice you have already been given some great advice and lots to think about. Just wanted to send massive hugs!
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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
02-01-2014, 06:25 PM   #16
Tink572
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I'm so sorry your son was admitted again and going through all this. Thoughts and prayers are with you.
02-01-2014, 07:21 PM   #17
vtfamily
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I'm so sorry that both of you are going through this! I know this is going to be one of those difficult weekends. Take care of yourself too. Make sure you take meal breaks and go for little walks.

First, you are doing a great job! It isn't easy to hold it together when you are so worried and there isn't a clear path to follow.

Second, if gut rest is going to give the docs a better idea of what is going on and how much of the bowel/colon is involved, then it is worth doing. Remember that Crohn's is a slow moving disease. Taking the time to have more information, better information, eliminates some of the guess work and can help bring peace to the decision making process.

Since Brian has already been through the TPN/gut rest routine, I'm sure he is not excited about the prospect of doing it again. I posed the question to Gus. He said to tell Brian to hang in there and that if he was in Brian's shoes, he would hate it, but he would do the gut rest if it meant he could keep his colon.

Third, postponement of the g-tube is minor compared to everything else. The TPN will take care of the nutrition. How does Brian do with the NG tube normally?

You'll be in my thoughts and prayers this weekend.
Hugs to you both.
Cheryl VT
02-01-2014, 07:45 PM   #18
Tesscorm
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I'm sorry, I don't have any advice either... just sending hugs and I'm just so sorry Brian hasn't found relief yet. Thinking of you!
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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
02-01-2014, 11:42 PM   #19
Brian'sMom
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I did ask about the temporary ostomy...he didn't say if that was in plan or not. The surgeon was changing his plan as he talked to us- the original TI plan-he said would have more talks after 2 weeks of bowel rest. The eat and see if he crashes again isnt going to happen anymore. They just want things to heal andyt after 2 weeks may add clear liquids. One funny thing Brian said: "if i get to eat to see what happens can it be bacon?"- silly boy
02-01-2014, 11:59 PM   #20
DustyKat
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WTG Brian!

Sending loads of luck and healing thoughts your way Kathy. I hope you have clear answers after the two weeks and they are for the positive.

Dusty. xxx
02-01-2014, 11:59 PM   #21
pink&green
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Sendingto you and your little man
02-02-2014, 12:13 AM   #22
vtfamily
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I did ask about the temporary ostomy...he didn't say if that was in plan or not. The surgeon was changing his plan as he talked to us- the original TI plan-he said would have more talks after 2 weeks of bowel rest. The eat and see if he crashes again isnt going to happen anymore. They just want things to heal andyt after 2 weeks may add clear liquids. One funny thing Brian said: "if i get to eat to see what happens can it be bacon?"- silly boy
A temp ostomy would be a great option!

Brian and Gus could be twins! He loves bacon too! Whenever he has been completely "off-food," he will refuse all clears and low residue foods. He would rather wait it out and get bacon!
02-02-2014, 12:25 AM   #23
vtfamily
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How does Brian like to pass the time while he is in the hospital? Gus likes gigantic Lego sets (2000+ pieces). He builds them pretty fast, but l-o-v-e-s the attention from the nurses at his Lego prowess. Gus is also a big reader, so we usually cart about 50 pounds of books along for the ride too.
02-02-2014, 12:14 PM   #24
kimmidwife
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Kathy,
So sorry you are going through this! My internet was giving issues yesterday so I wasn't able to get online. I highly recommend going for another opinion. If your surgeon is saying this is a difficult surgery then in my opinion he is hinting that you need another opinion. I think Cincinnati or chop is where to go. I do not recommend Boston. I have heard mixed things about them. Bowel rest is a good idea. Him going home and just eating again is silly as it is not going to solve anything.
__________________

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.
02-02-2014, 12:22 PM   #25
Max's Mom
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I just wanted to say that we are all thinking about you guys and hope things will get figured out soon.Must be really frustrating that the doctors don't have a real plan on what to do now.I'm glad they changed their mind about going home and introduce food again after bowelrest and "see what happens".I think you know now what will happen.Without a change in the treatmentplan, it will just get back to where it was,I assume.Brian seems like such a great guy.And tough as nails,too.Keep in mind,what doesn't kill us makes us stronger.There must be something in bacon that makes kids love it.Bacon is the first thing on Max's mind when we are in the hospital.
02-02-2014, 01:33 PM   #26
Patricia56
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Brian and Badger are two of a kind. We rarely have bacon for overall health reasons so I buy it as a holiday treat or for birthdays only. He could eat a whole package himself I think!

Hoping the gut rest is restful in every way. Sounds like you could all use a break.
02-02-2014, 05:49 PM   #27
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Sending you all lots of strength and courage.

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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
02-04-2014, 01:38 PM   #28
CrohnsKidMom
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Lots of prayer and warm thoughts coming your way!
02-04-2014, 01:45 PM   #29
Jmrogers4
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Lots of healing thoughts being sent your way. Yep, Jack is a huge bacon fan as well. When we go out to breakfast (special ocassions) he always gets french toast and 2 orders of bacon :0
02-04-2014, 07:29 PM   #30
SupportiveMom
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Big hugs... May you find answers soon. Scary being in there again I know but you all will come thru to the other side stronger. Sending good wishes to you all!

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