Crohn's Disease Forum » Parents of Kids with IBD » New Here, I need support, prayers...


01-24-2013, 01:17 PM   #1
blessedby3miracles
 
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New Here, I need support, prayers...

My son Drew was diagnosed back in May of last year with Crohn's, he is only 8 yrs old. Everything seemed to be going okay since finding out and starting Methotrexate. His blood tests were normal and no pain. Recently he started throwing up I thought they were viruses, it happened twice last months and this last week he got sick again. His Dr. was concerned and said that is abnormal that often and she thought he might have a partial blockage. We set up a appt for a CT but I was to scared to wait and he was not feeling well so I took him last night and they did it then. His blood looked great but his CT showed narrowing in his small intestine that is causing the throwing up. I just got off the phone with his doc and they want to have it removed next tuesday. I am in total shock and I am scared to death. My poor son had another surgery as a baby unrelated and now this..I am in tears. I have no idea what to think, and I feel sick to my stomach and blame myself..IF anyone has gone through this please give me advise or what to expect. I appreciate this support board.
01-24-2013, 01:26 PM   #2
Clash
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So so sorry to hear of all you and your son are going through. My son is 16 and on Remicade and MTX and we are still trying to tweak his schedule to achieve remission.

I was going to tag Tink572, I think they have a son that has been through surgery and can give you their experience, I also want to tag Dusty as both of her children have had surgery. Hopefully, they will see the tag and stop by and post.

Sending hugs, support and prayers your way!!
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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
01-24-2013, 01:49 PM   #3
JennaRae
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I am so sorry you and your family, especially your son, are going through this. My prayers are with you.
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DX with Crohn's in 2004
3 resections w/ appendectomy
Failed Remi, Humira and Cimzia
Tried Asacol, Pentasa, Imuran and all the other usual suspects!
Gallbladder removed
Total proctocolectomy w/ perm ileostomy 10/2012

Last edited by JennaRae; 01-24-2013 at 02:13 PM.
01-24-2013, 02:07 PM   #4
Devynnsmom
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(((((hugs)))) I don't have any advice, but I'm sure someone will be along shortly who will have advice. I can tell you, not to blame yourself. You did not cause his crohn's. Stay strong and try not to let him see you get too upset or it might scare him. I'm so sorry you and your son are going through this.
I have an 11 year old daughter who was *unoficially* diagnosed with Crohn's when she was 8. Last year, her diagnosis was changed to Ulcerative Colitis. She has gone through a lot. Her symptoms started when she was about 18 mos old. It wasn't until she got very sick and ended up in hosp, that they sent her to a GI and they started doing tests.
This board is a great support system. Keep strong, and stay positive. I'm sure he will be feeling much better after the surgery. (((((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
01-24-2013, 02:11 PM   #5
crohnsinct
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Also no experience with small bowel disease or surgery but plenty with guilt.
You have NOTHING to feel guilty about. Blood was normal and no outward signs. This is just another case of the disease going about it's business silently.

I am sure the surgery parents will be along shortly. Quite a few have been through it and have emerged on the other side! A rough ride for sure and we will all be praying for you!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-24-2013, 02:12 PM   #6
Tink572
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Blessed~I am so sorry your son is going through this. My son just had surgery this past August (he was 13 at the time).

Prior to that, for about 8 months he was vomiting every 8 weeks--like clockwork (so, 4 vomiting episodes in 8 months). We knew he had narrowing in his terminal ileum, but were hoping that Remicade would clear it up.

Finally, at the very end of July he had severe vomiting and (sorry, but this sounds so nasty!) said it tasked like he was throwing up poop. I knew then he had a stricture. We went to the ER and had surgery 3 days later. I, of course, was terrified!!

He had about 11 cm of his terminal ileum removed. It was all done laparoscopically through 1 incision in his belly button. He was in the hospital for 6 days after the surgery. He was amazing! He was up walking the day after surgery and about 9 days after surgery he was riding his bike and playing outside! He is now on Remicade and Lialda and is doing so good. He has grown and gained weight like crazy!!

I'll be praying for you all! If you have any specific questions, please ask and I'll do my best to answer them.

Thanks, Clash, for tagging me in this!
01-24-2013, 02:15 PM   #7
Jmrogers4
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Just wanted to say Welcome and offer support, no experience with surgery. Jacks blood test are/were normal and we were assuming everything was fine but he is still not gaining weight so we are having a scope done soon to see what is going on. So no feeling guilty or I will have to as well.
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Jacqui

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

Husband dx Crohn's 3/1993
currently none due to liver issues
01-24-2013, 02:17 PM   #8
Farmwife
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Hi and welcome.
I'm so sorry your child will be facing all this. As far as blaming yourself, their's no need. Like I tell my 4 yr. year old Grace, God made you the way you are for a reason. Sometimes it's just hard to see it. But I have faith she'll see it some day.

Hugs to you both.
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I'm mom to............... Little Farm Girl 9 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
01-24-2013, 02:28 PM   #9
blessedby3miracles
 
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Thank you so much for your support already.
Katie
01-24-2013, 03:31 PM   #10
Sascot
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Sorry to hear your son has to have surgery. My son had surgery but not such a big operation. It is horrible to watch them go through these things, but at least it should make him feel better afterwards. I hope it goes really well and his recovery is quick!
01-24-2013, 06:07 PM   #11
jmckinley
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So sorry about the surgery. We have not had to face surgery, so I don't have experience with that. I can sympathize with feeling guilty and scared though. I've done the same with thinking it's a bug when it wasn't. I get tired of jumping to the conclusion that it's IBD when it's a bug and just hold out hope sometimes. Then it turns out to be a flare. But it isn't your fault. It is part of this disease. We live with the "what next" question all the time and never know when things are possibly brewing under the surface.

I hope that everything goes well and he is up and going soon!
01-26-2013, 01:27 AM   #12
DustyKat
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Hi Katie and

I'm so very sorry to hear about your boy, what a shock for you all...

As mentioned above, both of my children have had ileocaecal resections. My daughter had emergency surgery as she was undiagnosed at the time and she had symptoms of narrowing too. My son was diagnosed very quickly with few symptoms but soon developed complications that required surgery.

They have both had wonderful and lasting outcomes from their surgery. It put them both straight into remission and they have stayed there. 6.5 years and 21 months respectively. They are both at university and living life to the full. They do have bile salt malabsorption diarrhoea as a legacy but that has taken up a little over time naturally but they are managing well with the use of psyllium husks. Not everyone suffers with post op though.

Since your lads surgery is fast approaching I will copy a paste an outline of their surgery's for you. It is an older post hence the discrepancy in time since surgery to what I have posted earlier in this post:

Sarah:
had a right hemicolectomy 5 years ago and has been in remission since that time. Her surgery was an emergency, she was undiagnosed, and so was performed as an open procedure. This is an outline of her post op recovery...

Surgery day - She was in theatre for approx 4 hours. When she returned to recovery she had oxygen, two IV's, two drains, an NG tube and an IDC (urinary catheter). She was in ICU overnight. She asked to go back to the ward the next morning. I think the surgeon wanted her to stay another day but she couldn't get out fast enough! Oxygen therapy ceased.

Day 1 post op - Moved to the ward and spent the day on bedrest. IDC removed. NG tube on free drainage and morphine IV remained on PCA (patient controlled analgesia).

Day 2 post op - No change with drains and tubes. Physiotherapy commenced. Up out of bed and gentle ambulation commenced twice a day. Although Roo refused to use a pan so started walking to the toilet that day.
Started eating ice chips.

Day 3 post op - One IV removed and condensed IV morphine and fluids into one. NG tube removed. Increasing mobilisation. Ice chips.

Day 4 - Bowels open. Commenced on clear fluids. Mobilising.

Day 5 - Tolerated fluids from previous day and throughout this day so commenced on light diet at tea time. Both drains removed and IV removed. Oral analgesia and antibiotics commenced.

Day 6 - Discharged home.

I don't know if being paediatric made a difference but each day she was visted by the surgical team twice, the physiotherapist twice, the pain management team once and the dietician once.

Sarah was in very poor condition prior to surgery so I felt that she didn't truly recover for a number of months. I would say she was running on about 80% for the first few months and reached full recovery after about 6 months. She returned to school 3 weeks after the operation and has now been in remission for 5 1/2 years.

Matt:
had a right hemicolectomy in April. It was planned surgery that was required due to an existing fistula and abscess. He had a pigtail drain in for 3 months prior to surgery.

Surgery day - He was in theatre for about 4 hours and recovery for 2 hours. When he arrived back on the ward he had one IV that consisted of the PCA (patient controlled analgaesia) and other IV fluids for hydration and IV medication. He also had one wound drain, a urinary catheter and oxygen.

Day 1 post op - No change with IV's or tubes and drains. Started mobilising and about an hour sitting in the chair.

Day 2 post op - Still no change with the tubes and lines. Commenced on clear fluids and continued with gentle mobilisation.

Day 3 post op - Urinary catheter removed, still on clear fluids, mobilising well.

Day 4 post op - PCA removed and started on oral analgaesia, remains on clear fluids, started farting, only one IV now left.

Day 5 post op - Last IV removed, commenced on free fluids, bowels open.

Day 6 post op - Commenced of light diet.

Day 7 post op - Commenced on full diet, drain out.

Day 8 post op - Discharged!

Matt had no issues post op and I feel that the start of week 4 post op was the real turn around in his recovery. It was at this point that he really started to move freely and shades of his old self started to appear. His recovery has been much quicker than Sarah's. He returned to school 3 weeks after surgery, was allowed to drive short distances after 3 weeks and long distances after 6 weeks but he was driving longer distances at 5 weeks. Started soccer training at about 5 weeks as well. He is also in remission.

The life savers in hospital for them were...TV, mobile phone, iPod, laptop with DVD's, ear plugs, comfortable loose fitting pyjamas/clothes, footwear that is easy to slip on an off, like slippers, magazines/books and short visits from friends when they were up to it.

They have both been on maintenance meds (Imuran) following surgery.
Good luck for Tuesday! I'm sure he will do fab and if you have any questions please don't hesitate to ask.

Dusty. xxx
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01-26-2013, 08:00 AM   #13
Dexky
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I'm sure Drew will be ok, please keep us updated when you can!
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
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