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Crohn's Disease Forum » Parents of Kids with IBD » C.diff, ileus, blockages, j-pouch


 
12-09-2012, 11:44 PM   #1
QueenGothel
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C.diff, ileus, blockages, j-pouch

Rowan 4 year old jpoucher with slowed bowels and distention. Admitted to hospital thru ER for possible bowel obstruction. Per X-rays found many small bowel loops. After testing positive for c.diff oral vancomycin started. Not much improvement 48 hours later. I was told they want to start food tomorrow. My concern with this is nothing has changed. She has not really improved, still no bowel sounds, they said they heard it I have been listening all evening and not a sound yet. She is still distended. My fear is with adding food and she has a bowel twist, obstruction, narrowing caused by scar tissue. They are making an assumption that the c.diff has caused this pseudo ileus, I hope they are right but why add food if she still isn't moving. What will this do? Worsen the situation from as I see it.

I have some trust issues with doctors in general we have not really had an easy year. No real fault to them but Rowan has never ever presented normal. They said if she had a bowel obstruction she would be sicker. Well last time she had a bowel obstruction she was almost released with it. No fever, no laziness, no vomiting. I've been here done this before.

My fears are they will add food and she will become so distended we end up in the OR with c.diff, which can kill her.

I am going to requested they prove to me she is not obstructed but using tests rather than playing Russian roulette with my daughters intestines. Ct scan I am assuming. I don't know a ton about all the tests you can have done for blockages so please give me some advice. What would you do if you were in my shoes?

Sorry if I am rambling but I don't know whom to talk to about it. Please tell me your thoughts. Am I crazy?
12-09-2012, 11:50 PM   #2
QueenGothel
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DH said she was doing great and improving. I am beginning to think he is just as delusional as the resident that I just spoke with. before I got here I was excited about starting food thinking wow thing must really be improving. Then I got here and things haven't changed really at all.
12-09-2012, 11:54 PM   #3
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Sorry, Mary, I have no advice to give you I just posted in your other thread.. i was so hoping to hear she was beginning to feel better.

It's so hard, I'm sure you're exhausted but try to stay strong a bit more! Always in my thoughts and prayers!!
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12-10-2012, 12:33 AM   #4
Patricia56
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Oh Mary. I am so sorry.

First, is Infectious Disease managing the C. Diff? If not, then get them in there pronto.

The distention is almost certainly from the c. diff. It can cause extreme distension. When my sister was sick with it the last time she looked like she was 9 months pregnant with twins.

So if you are thinking the distention is from a partial blockage, well it might be that or both or just the c. diff.

Second, did they use contrast medium when they did the Xrays?

Third, is she getting anything by mouth now? Liquid formula?

If nothing by mouth, then it would seem sensible to me to start with liquids before moving on to solids. If she's getting water and clear fluids then move up to soup/ensure/ice cream and see how she does.

Are you at a children's hospital? if not can you get her transferred to one? Don't know how the system works there so can't help much with that part.
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12-10-2012, 01:22 AM   #5
QueenGothel
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Yes we are at a children's hospital.
No we haven't saw infectious disease.
She has had clear fluids today.
They did not use contrast it was an ER image.

More info:
She just pooped black liquid. Took a photo and am waiting on the attending resident now. Could it be from purple Popsicles? I requested them to test it for blood.

Last edited by QueenGothel; 12-10-2012 at 01:42 AM.
12-10-2012, 01:53 AM   #6
Patricia56
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I would absolutely want ID consulting on her case. She has GI issues already and presented with atypical symptoms. ID might have an opinion one way or the other on the food issue.

Does the poop smell bad? Hope you were able to catch it for them to look at. I am keeping good thoughts that she isn't having any bleeding.

I asked about the contrast because my sister has had what appeared to be small bowel obstructions a couple times and each time it resolved after she had a scan that required the use of oral contrast fluid - I think it was Gastrograffin. So I was wondering about that.

My heart is aching for you tonight. With you in spirit.

Last edited by Patricia56; 12-10-2012 at 02:54 AM.
12-10-2012, 03:28 AM   #7
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I would second getting a scan with some sort of contrast. It's really the only way they can see stuff moving through the bowels or not moving as the case may be. It would show any blockages or narrowings. I think it's a good idea to get some sort of scan before starting food - just to be sure. My son had a barium meal, but if you can avoid that you should - it's really thick disgusting stuff that can get stuck and cause pain. Andrew had no problem with it and passed it all but I had it once and ended up in agony with constipation.
I hope they get something organised soon!!
12-10-2012, 05:16 AM   #8
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You aren't crazy Mary...

The choice of imaging they always used for Matt was phase 1 CT, less radiation, with Gastrografin contrast. In his case it was always pretty accurate.

Given Rowan's history I would err to caution too Mary. In the scheme of things peace of mind before pushing on isn't a big ask on your part. Good luck and squishy but gentle hugs for Rowan, bless her.

Dusty.
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12-10-2012, 05:26 AM   #9
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I agree with all the above especially on keeping her on liquid diet until things improve - can't they do an MRI or CAT - we would love to send Rowan one of our gastronaut ostomy puppets (at no cost of course) as kids love these lookalike so they can change the puppets bags etc. please let me know if I can send you one. fill in the contact details. we have some in the US waiting for dispatch, again they are all given to kids free. In the meantime all our love and prayers. http://www.thebowelmovement.info
12-10-2012, 05:37 AM   #10
izzi'smom
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There isn't really a plain x-ray that is appropriate for obstruction...while it CAN show up on an abdominal x-ray it may not. A CT abdomen with oral contrast is a much better option.
I am going to bet that the purple popsicles could have caused black stools. However, a stool test for occult blood isn't unreasonable.
Sending loads of love for all of you...and (((HUGS)))!
Hoping you get what you need and that today is a good day!
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12-10-2012, 05:48 AM   #11
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Dear Rowan,
You did a nice job coloring-I like how you stayed in the lines. I hope you get better quick! I would like to meet you in person some day after you are better.
Love, Izzi
12-10-2012, 06:50 AM   #12
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Mary, I don't know much about imaging tests c - diff or pretty much anything that you are going through. But I DO know that you have practically saved that little girls life using your intuition before. You go ahead and follow your instincts...worse case you are wrong but you know your child and have to ruke out all doubt before agreeing to anything!

Hugs, kisses, crossed fingers, toes and everything else and above all lots and lots of prayers!
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12-10-2012, 06:55 AM   #13
QueenGothel
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So they ordered another x-ray, to compare to the first x-ray. I requested ct scan and they said if the X-ray doesn't show anything they will do a CT with contrast. They said they are trying to avoid the radiation bc she has had so much radiation already. They are also having her blood drawn again for CBC. Talked with the team, and they agree she is not any better than before she came in, they made her NPO again.

They said they would let her surgeon know I have requested ID be involved. X-ray is stat, and I am doubting the outcome will give us really anything to go on.

I mentioned the MRI or MRE and the yes aid it is a long test which she would have to be knocked out for, another scenario they are trying to skip.

You think I should push for an NG suction for the distention?
12-10-2012, 07:00 AM   #14
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Don't mess with c diff. I knew your fear first hand. My Grace wasn't even as sick as Rowan but I had a nurse look me in the eyes and say if Grace would have been sicker she could have died. Get the testing and or go to EN temporally.
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12-10-2012, 07:43 AM   #15
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Vancomycin is the "big gun" for c diff. Nonetheless, I would request the ID consult. Remind me, has Rowan had c diff before?

I think your instinct to stay on fluids until she "goes" is a good one. Have you asked for a tube feed?

Mary - my heart hurts for you both. Hang in there - you know her best of all!! N

Love, J.
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12-10-2012, 07:56 AM   #16
imaboveitall
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Don't think I'm weird but Rowan was one of the first thoughts I had when I got up today.
Something about the poignancy of that photo, a tiny child with a Christmas drawing who may spend Christmas in hosp is sticking with me.

I second Patricia's recommendation re: infectious disease consult.

A thought that is bugging me:
could the c-diff be an incidental finding and not the cause of her current issue?
V had one pos c-diff result, once. The Saint was out of town and a partner wanted her to start Flagyl. As she had no symptoms, I refused. Via email, The Saint backed me up and said, to the effect that some can have a pos result but not an infection and no need to treat.

Now I know Little Star there has symptoms galore but to me they don't sound that much like c-diff, i.e., copious bloody foul smelling diarrhea which is the hallmark.
With no colon perhaps the symptoms are different, though.
But what if there is something else amiss and it created conditions for the c-diff to overgrow, and they'll miss that thinking the c-diff is the only thing going on??
OR, the pos c-diff is like V's, not an actual infection but found incidentally, and the real issue is something else?

More imaging and ID is my thought, and liquid diet of really broken down formula.

Much love
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12-10-2012, 08:50 AM   #17
QueenGothel
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So after the team agreeing with me and ordering NPO again and adding the x-ray the attending pediatric surgeon came in and notified me she canceled all of them. But did just have her blood drawn. Saying if she were getting worse her WBC would be going up and HgB would be going down if the black stool is indeed blood.

Her reasoning is this the x-ray is a pointless image. Says yes a ct scan would show an obstruction but that the barium contract could exasperate her to get diarrhea and she doesn't want that says maybe vanco via enema. If tomorrow if no mark improvement adding IV Flagyl to get things moving and then stopping it once she starts moving, continuing the vanco.

She said Rowan would be vomiting with the fluids if she were obstructed. I said if there were a narrowing she would not and food could be the straw that breaks the camels back she agreed and said until I am convinced she will not add the food. So I am back where'd I started basically. Ugh! I am sooo exhausted!

Imaboveitall she had the rancid smelling diarrhea for a few days but no distinct smell now. I don't think your weird. I am flatter your thinking of us and very thankful. I asked the same question as to which came first ileus or c.diff and she said it is common for c.diff to come first and rare for it to go the other way but understand how at am thinking and wants to make sure I am confident in her treatment.
12-10-2012, 09:16 AM   #18
QueenGothel
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Vancomycin is the "big gun" for c diff. Nonetheless, I would request the ID consult. Remind me, has Rowan had c diff before?

I think your instinct to stay on fluids until she "goes" is a good one. Have you asked for a tube feed?

Mary - my heart hurts for you both. Hang in there - you know her best of all!! N

Love, J.

Rowan has never had c.diff before. Nutrition came down to discuss this and they want to add Nutren Jr to see how she handles that. Doctor must approve first.

Farmwife she really does not appear sick at all I think this is why that are so apprehensive about my worries I think.
12-10-2012, 09:20 AM   #19
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Normal I would agree but...she's NOT normal! She special and being special she and her mother should get all they ask for!
12-10-2012, 11:36 AM   #20
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Mary,
I too have been thinking of you guys since I woke up. First chance I have had to get to the iPad though!
I agree with the others infectious disease consult ASAP! I am also glad they are not giving her solids. I agree with the others about if there is a mild blockage contrast could help clear it. I will continue to keep her in my prayers. I think you are doing things right though! Keep strong. I know it is rough but we are all sending hugs and love to you both!
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12-10-2012, 12:01 PM   #21
imaboveitall
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I hope it really is *just* c-diff. I know that statement exemplifies the reality we all live in on here, always weighing and hoping for the lesser of the evils

I cannot wrap my head around why a kid not immunosuppressed, not just off a course of abx, not exposed to a high risk population, has c-diff.
I know you must be obsessing on that too.
SOMEthing made it overgrow. And I feel that thing is maybe being underinvestigated.
I'll be watching this thread.
12-10-2012, 12:18 PM   #22
izzi'smom
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Mary, I have been contemplating this since I read your post earlier. Izzi tested positive for c-diff before her crohn's diagnosis. But her stool tested +. Marcus told me that because Flagyl was ineffective and they never tested her for c diff TOXINS (plus she was also not in the high risk pool and they had to test her 3 x to get a +), he believes she is just a carrier, not that she has (ever had) an infection. So find out which test they did...maybe they are barking up the wrong tree. If so, maybe you can convince them to do more imaging.
Thinking of you, hon!!
12-10-2012, 12:26 PM   #23
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Thanks Angie.
V was presumed to be a carrier but she was pos for both and all subsequent tests were neg.
I feel there's something else in play here for that darling.
(God her photo really got to me *sniffle*)
12-10-2012, 12:59 PM   #24
Patricia56
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Mary -

I sure hope you are getting some rest here and there or have someone you trust to spell you so you can rest outside the hospital. You need that so you have a clear head.

It sounds like you got a surgeon who knows what she's about and respects you as a parent too. Woo hoo! Yes a CT might be helpful but it potentially carries the radiation exposure of 500 xrays so doing as few as possible is good.

I have been busy getting my kids to school or would have posted sooner.

I have been wondering about the accuracy of the c. diff dx as well. She really does not appear to have typical symptoms at all. Fever? D? Abd pain? Seems really sick? No to all of those right?



CT is accurate in identifying low grade obstructions or partial obstructions less than 50% of the time unless there is strangulation and severe damage to the surrounding tissues which is what actually shows up. If she were having that then I think everyone would know it, which was the surgeon's point.

So I agree with the surgeon that it may not make sense to push for CT when she has no other signs of obstruction than lack of bowel movement and mild distension.

What I think you should ask for instead is ultrasound.

According to the American College of Radiologist
In skilled hands, US has been reported to have a nearly 90% success rate in diagnosing SBO [8,56-58]. In the pediatric age group, US has proven useful in evaluating intussusception [53], midgut volvulus [59], and other causes of SBO [60].
I did some research on using the oral contrast fluid to treat SBO and it has some good research data to back it up. Of course all of that data is from adults. However Gastrografin is approved for pediatric use.

It works by changing the fluid balance in the tissues.

If US or other indicators confirm or strongly suggest she has a partial or full SBO then maybe having them give her an oral contrast fluid with either high or low osmolality could be the next step.

(In this case osmolality refers to how similar or different the content of the contrast fluid is to the fluids in the intestinal tissues. For example, the contrast fluid may have a lot more or a lot less water. Because it's so different from the intestinal tissue fluid content, water is either drawn out of the intestinal tissues or the water from the contrast medium is drawn into the intestinal tissues. Either way it changes the volume or size of the intestinal tissues and hopefully clearing or reducing the obstruction.)

Hope that helps.
12-10-2012, 01:27 PM   #25
QueenGothel
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Patricia you are correct she doesn't currently have any "normal "symptoms of c.diff. Though in rare case an pseudo ileus becomes dominant mostly in cases of people without a colon. I did mention an ultrasound to help with seeing what is going on and her surgeon said the issues is she has trapped gas and an ultrasound cannot see through gas??? I think this was what she said.

Angie, they did a clostridium toxin report **positive**

Imaboveitall I told the doctors the same thing something could have cause this overgrowth. A twist, a narrowing, a blockage. They don't think so but want to prove me wrong.

Well good news is black stool came back negative for blood so it must be the purple popsicles. Nothing can scare me faster than a bunch of black stool.

Blood tests are back
Fridays tests vs today's test results

WBC 14.6 - 6.1
HgB 12.2 - 10.6 (L)
HCT 36.9 - 32.0 (L)
PLT 633 (H) - 444 (H)

All others are normal not much change.

Questioned the HgB bc well we have done a lot of bleeding in our past and they think she might have been dehydrated when she came in.

Thanks everyone I have all your info now store in my brain so hopefully we can come to some sort of compromise and get me some piece of mind someway, somehow.
12-10-2012, 01:44 PM   #26
Patricia56
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Are they hearing bowel sounds that you can hear?

Interesting assortment of test results. She's not on any actual treatment right? Just being kept hydrated?

I'll be thinking of you - hope things improve without the need for any further intervention and you can both go home ASAP.

Hugs.
12-10-2012, 01:48 PM   #27
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They said yes they hear them nurse says she hears them I haven't heard squat!

Correct hydration and vanco at this time.
12-10-2012, 05:07 PM   #28
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Mary, screw the nurse hearing them, can the GI hear them???

I don't think she's bleeding internally. I do think her small bowel is having an issue apart from the c-diff that may be causative or at least contributory to the c-diff.
If she isn't markedly better by Wed I'd insist on imaging. In the interim I'd trial her on Peptamen or another amino acid based formula and see what reaction her gut has.
12-10-2012, 05:24 PM   #29
izzi'smom
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Patricia, every facility I have worked at orders a plain film if SBO is unlikely, but if there is a strong suspicion clinically/question of SBO on plain film, CT is the gold standard. Bedside US may be used for a quick check but gives far less info regarding the site/severity of the obstruction. I have also seen US used for pregnant patients.
I am a huge radiation awareness fan but I think if Rowan continues to be symptomatic and the Flagyl/Vanco combo isn't alleviating her symptoms CT is the way to go.
Because her c diff toxin was + I would acquiesce and keep tabs on daily bloodwork for now but push hard if she seems to be worsening.

12-10-2012, 05:40 PM   #30
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They removed her NPO status. She is asking for food. Belly is a finally growling. Good sign! So I just let her have some vanilla yogurt and ordered her some Nutren Jrs. So at the very least I know she is getting nutrition in her. I she starts throwing up I guess I will know she is wrong. They said I can feed her what I want, though they feel she can eat whatever she wants. The surgeon said all the distention is gas from the c.diff and not a bowel obstruction bc she is soft and not in any pain when you apply pressure to her abdomen. I am going to go against every fear I have and trust this stranger. I have to start trusting someone sometime. The surgeon does completely talk me through her reasoning and explain everything very thoroughly. I am scared but Rowan really like her bc she gave her yogurt.
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Crohn's Disease Forum » Parents of Kids with IBD » C.diff, ileus, blockages, j-pouch
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