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

My Support Groups:
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.
__________________
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 (15 mg weekly)
vitamin D, folic acid, 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
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
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.
__________________
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
Forum Monitor
 
Maya142's Avatar
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
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
__________________
DS - -Crohn's -Stelara -mtx
11-08-2018, 09:46 PM   #5
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
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
Forum Monitor
 
Maya142's Avatar
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
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
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
11-21-2018, 09:18 AM   #8
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
Did E get her scopes? Any news?
11-21-2018, 11:47 AM   #9
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
Yes, scopes happened 2 days ago and went well. Everything was completely fine on the upper endoscopy, and her colon looked great except for one tiny visible lesion. The doctor didn't try to see past the terminal ileum since she was afraid that area might be fragile due to the recent blockage.

We haven't talked to her GI yet about next steps since biopsy results won't be back until next week.
12-03-2018, 03:30 PM   #10
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
The biopsies came back with no sign of inflammation, which is fantastic, but a little confusing since her calprotectin was at 250 in June and then September. (She had an MRE last spring that didn't show inflammation in the small intestine either.)

We see the GI next week--I'm curious if she has some guesses about the calprotectin results. In the meantime, as long as E continues without symptoms or weight loss, we'll stay with the same course of treatment.
12-03-2018, 06:56 PM   #11
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Hmmmm...does this mean they think the stricture is more likely scare tissue?

FCP can vary a pretty good deal. This is why it is a good idea to get a calpro at the same time as scopes and imaging...this way you know what those numbers reflect. Between your girl and mine I am losing my interest and fascination with Calpro:/
12-03-2018, 08:53 PM   #12
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
One thing to keep in mind is Fcal varies because
Transit time and the number of cells it picks up off the surface of intestine varies
Additional biopsies are just that tiny sections of cells removed
And Crohns is not continuous but patchy
So until they get better at figuring out the complete picture
Itís mostly an educated guess
Unless they can see something
Glad she is doing better though
12-03-2018, 09:48 PM   #13
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
Hmmmm...does this mean they think the stricture is more likely scare tissue?

FCP can vary a pretty good deal. This is why it is a good idea to get a calpro at the same time as scopes and imaging...this way you know what those numbers reflect. Between your girl and mine I am losing my interest and fascination with Calpro:/
Yes, they saw the stricture clearly in the MRE, and it's scar tissue, rather than inflammation

And yes, I should ask about getting another calprotectin now, so we can try to correlate it with the scope results--good idea.
12-03-2018, 09:51 PM   #14
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
One thing to keep in mind is Fcal varies because
Transit time and the number of cells it picks up off the surface of intestine varies
Additional biopsies are just that tiny sections of cells removed
And Crohns is not continuous but patchy
So until they get better at figuring out the complete picture
Itís mostly an educated guess
Unless they can see something
Glad she is doing better though
All good points--thank you.
12-03-2018, 11:52 PM   #15
Maya142
Forum Monitor
 
Maya142's Avatar
Well, don't most kids tend to have ulcers or visible inflammation once the disease is caught?? Since it often takes a long time to be diagnosed? So in those cases, it's more than an educated guess. If you see an ulcer, then you know there is at least chronic inflammation in the bowel.

Of course, in the cases where it is caught early and there is no easily visible inflammation, biopsies are sort of taken randomly - an educated guess, like MLP said.

But when there is clear inflammation - a friable TI, or ulcers in the colon, or bleeding or even just redness and swelling, it's more certain than a guess that you would at least find chronic inflammation if you biopsied there.

How is E feeling pdx? Are there no plans to remove that stricture, if it's clearly scar tissue?
12-04-2018, 12:13 AM   #16
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Ds had no ulcers or signs of inflammation in his intestine at dx
Mild friable tissue in rectum due to prolapse
So much so GI thought it was food intolerance causing his issues
But random biopsies did catch chronic inflammation and acute inflammation plus the famous granulomas needed for dx

If they had biopsies at other random spots who knows

Hence the educated guess on where to take biopsies on a clean looking scope
Horrid looking scope no issues they take samples where it looks bad
Eosinophilic Esophagitis has a similar patchy nature in the upper GI track
Where if it looks bad no issues on where to biopsy
But if the tissue looks ok
They may or may not detect the disease activity level
12-04-2018, 02:13 AM   #17
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
How is E feeling pdx? Are there no plans to remove that stricture, if it's clearly scar tissue?
E is feeling good--no Crohn's symptoms at all. Right now there are no plans to remove the stricture, but that will change if we notice any signs of another obstruction. We'll definitely talk to her GI about options next week, though. I think she was planning to talk to some of the adult GI's at Kaiser to get their opinions too.
Reply

Thread Tools


All times are GMT -5. The time now is 10:20 AM.
Copyright 2006-2017 Crohnsforum.com