11-08-2018, 04:43 PM   #1
pdx
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Join Date: Dec 2014
Location: Portland, Oregon

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Bowel Obstruction

E is home from the hospital and doing really well. Her doctors weren't sure exactly what was wrong for the first couple of days, but it turned out that she had a bowel obstruction at the point of her stricture. The obstruction cleared on its own after 48 hours of IV fluids (and pain and nausea meds) and nothing by mouth. Once the blockage cleared she felt immediately better.

We had gotten too confident about the foods that she could eat, and will now be much more careful.

So now it's not clear how much plain-old Crohn's inflammation is going on. Evidently the inflammation and fluid that showed on the ct scan could have just been a result of the obstruction. She still has scopes coming up in a couple of weeks, and we'll know more after that.

On the positive side, E did amazingly during the entire ED and hospital stay. Medical procedures are always hard for her, and she doesn't like to talk to doctors, so she can be a difficult patient. She was calm and mature throughout this stay, and she talked to all her doctors and nurses like an adult. It made me feel much better about her ability to manage her Crohn's on her own as she gets older. The other great thing was that her own doctor was the attending peds GI at the hospital this week, which was such a fortunate coincidence.
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Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, 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, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
11-08-2018, 05:55 PM   #2
crohnsinct
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Join Date: Mar 2012
Location: California

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What an awful experience. Poor E. Did you know about this stricture before? Do you know if it is scar tissue or inflammation? Yikes! Those scopes can't come fast enough eh? Glad she got through it quickly and is resting comfortably at home.
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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
11-08-2018, 06:05 PM   #3
Maya142
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Poor kiddo. That sounds painful!! I'm glad she is doing better now.

And way to go E for handling the hospitalization and tests well!! My daughter was the same - struggled when she was younger, but as she has gotten older, she has gotten better at managing tests and procedures. Part of that is due to just getting older and becoming more mature, but part of that is from what we've learned (through trial and error). Now we tell doctors/surgeons well before the procedure that she struggles with PTSD and anxiety and they all accommodate her.

We learned the hard way that you have remind doctors every time - they have so many patients that they forget.

I mention that only in case she has to have surgery - if that's the case, it would be helpful to sit down and plan ahead of time how they can make her comfortable and less anxious.

I hope scopes give you an answer. Where is the stricture - her Terminal Ileum? I'm just curious because if it's higher up in her small bowel, it wouldn't show up on a scope, would it?
__________________
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
11-08-2018, 06:53 PM   #4
my little penguin
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Yikes !
Big hugs your way
If I am reading this right
She has a known stricture and that has now cAused an obstruction
Are they removing the stricture since those donít go away ?

Glad she is home and did well inpatient this time
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DS - -Crohn's -Stelara -mtx
11-08-2018, 09:46 PM   #5
pdx
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Join Date: Dec 2014
Location: Portland, Oregon

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Yes, we've known about this stricture since diagnosis 4 years ago, and her doctors got a good look at it last spring on her MRE. It's just before her terminal ileum, it's scar tissue, and it's just a couple of millimeters long, so really short.

She had a couple of partial obstructive events early on, and since then we've been careful about what she eats. As long as she avoids seeds, corn and popcorn, and very fibrous fruits and veggies (especially raw ones), she's been OK. We had been slacking off a little this fall, and then just before the obstruction, she ate a dinner at her grandma's house that involved 4 things on the bad list (which we didn't put together until after the fact).

We talked to her GI a little about what to do next with respect to the stricture. We don't want to consider surgery at this point, because the studies I've read suggest that the point of resection just becomes the next stricture eventually. It sounds like an endoscopic balloon dilation might be a possibility because the stricture is so short and so close to the terminal ileum, but there are small perforation risks with that. At this point, we feel like we can control the obstruction risk with some not-very-restrictive diet choices, so we're going to take that path for now. If obstruction becomes a continuing issue, though, we'd definitely consider surgery or dilation.

Maya--you're right, the stricture won't show up on the scope. We're just trying to figure out why her calprotectin has been elevated for the past 6 months, despite having very high Remicade trough levels. If the scope doesn't show any inflammation, we'll continue with Remicade, and if it does, we'll think about treatment changes.
11-08-2018, 09:58 PM   #6
Maya142
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That sounds like a good plan - makes a lot of sense to switch Remicade if there is inflammation in her colon and TI. I hope a low residue diet will help keep the obstructions at bay. Really glad she's feeling better now.

For what it's worth, when we were discussing options regarding the stricture M had (I say "had" because it showed up on one scope and not on any scan after that), we were told that they'd probably try ballon dilation at least once before going to surgery.

However, we were told that balloon dilations only last for so long and then would have to be repeated. The surgeon we saw did say that a stricture would eventually require surgery, because they don't want to keep repeating balloon dilations forever, since each one requires sedation and comes with a risk of perforation.

That said, M's supposed stricture was in the duodenum and so the advice may be different for a stricture in the TI.

Good luck!!
11-12-2018, 04:25 PM   #7
Tesscorm
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Join Date: Jun 2011
Location: Ontario

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pdx, so sorry you and E had to go through this! But, so glad the obstruction cleared and she's back home.

Sounds like you have a good plan going forward. Hopefully, the scopes will provide you with better insight as to how to proceed!
__________________
Tess, mom to S
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
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