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RM
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 my DD 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?

Replies sorted oldest to newest

Jan DollarJan DollarModerator, RN, retired
Admittedly, my level of knowledge is limited for the pediatric population. That said, i would be hard pressed to force food when there are no bowel sounds. If anything, perhaps liquids. C. diff could the a contributing factor, or the only cause, but regardless, I'd still want some active bowel sounds... On the other hand, with such a small body, her reserve to go without nourishment is far less than an adult, and IVs just do not suffice. TPN is more risky too. I don't blame you for not trusting, since the margin for error is so slim. I guess that is why I felt I never was cut out for pediatrics.

I believe the best proof of an active gut, is passing gas rectally. I don't think there are any tests that are better without causing more grief.

What are your chances for a second opinion?

Jan Smiler
Jan Dollar
L liz11Member
Mary.. purple popsicles could make blackish output. And moving gas is obviously a very good thing. So maybe this is a step in the right direction?

Is there plan to move her to full liquids - like the peptamen junior things you had her on BEFORE going to any food? As an adult, I would want to know full liquids was moving through and outputing before adding any food. But as jan says.. she is so small... I just don't know.

I do disagree with the doctors that if she had a bowel obstruction that she would be sicker.

Question for you - are there infectious disease doctors and nutrition DOCTORS (not nutritionists) involved in her case? Also is it a pediatric surgeon caring for her, OR a pediatric GI doctor. Does she have both?

You cannot always see obstructions on imaging. However,seems like they found it on the xrays. I would be hesitant to just get CTscans unless absolutely necessary. She has so many years ahead of her.

Mary hang in there, stay strong, and fight for what is right for your daughter. Your mother's intuition KNOWS.
L
RM Rowans momMember
She currently see ped surgery and not a GI. I requested a consult from ID and GI but they sound apprehensive.

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 contrast 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 again she 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!
RM
L liz11Member
ok mary.. just based on my own personal ADULT experience.. I think it sort of sounds like a good plan. They absolutely have to get this cdiff kicked. And you do need to be careful of pointless imaging. Like I said before, little Rowan has lots of years ahead of her.

I would probably still pursue the ID and pedicatric GI, and nutrition consult for sure. Someone needs to be focused on her nutrition or lack thereof, to help determine whether tpn or soft liquids, etc.. need to be added.

Hang in there and stay tough. You did make some progress, because you got the doctor to agree that she might have a partial obstruction and to agree about not adding food right now.
Please make sure you are trying to take care of yourself and eating yourself.
L
K KelsieMember
My dauhter had many blockages. Some stuff would still move through but it was all liquid and painful. Labs never told us anything. Her inflammatory markers seem to be broken. Even when she had moderate to severe pancolitis, her blood levels were all normal. And she "looked" good...on the outside.

Because she has had quite a few ct's, and our Ed does them with no contrast which I think is better if an obstruction is suspected, we usually get an MRI to avoid the radiation. Maybe an MRI is an option?
K
skn69skn69Member
Mary,
Just a word from the other side of the issue...I was the kid in the bed with constant blocages, infections and bloody diareahea (granted it was in the 60's and 70's)...every single time that my dad drove me to ER the doctors said the same thing...'she looks too good to be sick'. I never screamed, cried, squirmed or moaned over the pain...I developed a very strange knee-jerk reflex to it all...I used to giggle. My mom would go nuts and try to pinch me to get me to stop because the doctors refused to believe that there was anything wrong with me (the more she pinched the more I giggled!)...I looked too 'normal'. They often refused to admit me inspite of the lack of bowel sounds or the distended abdomen because I did not exibit the 'typical signs'...they forgot that little kids develop a whole range of coping mechanisms to deal with reccurent illness...and it seems as if our blood work does not always show up abnormal either (proof that the brain is a very strong influence over the body's functions)...I had a nasty stricture in the colon at the old colostomy site that would cause reccurent blockages but CT scans weren't around back then and it wasn't always visible on x-ray...Mom's know best and you have to fight to be heard...kids with chronic illness are not the same as kids with a sudden onset disease or condition...she has developed her own coping mechanisms to her situation and they may mask or disguise the typical symtoms...ask her to tell you/them what is going on in there...She may just know/feel/understand more than most people give her credit for.
Keep on doing what you are doing.
Sharon
skn69
RM Rowans momMember
Surgeon doesn't believe she's has any kind of blockage, believes all the belly dilation is gas from the c.diff. Was instructed to start feeding her last night. Started with yogurt and nutritional shakes. So far so good. Regular diet this morning and his afternoon if all goes well we will be home for dinner. She is tolerating food well no real complaints beyond gas and is passing gas now with bm's. so things are looking better today.

My biggest issues is trusting doctor bc we have had so many issues. I threw my caution to the wind for the first time and am going to trust their opinions. Praying they are right.
RM
Last edited by Rowans mom
Jan DollarJan DollarModerator, RN, retired
Well, think of it this way, your distrust served you well, because it forced the surgeon to explain his thoughts to you, so you could understand and be on board. Doctors are not magicians and do not have a crystal ball to predict the future, but they do have many years of education and experience, so we do have to credit them with that. They just tend to be too skimpy on the communications sometimes!

I am sorry that this turned out to be C. diff, but I am glad that they got it figured out and have her on the right treatment. Just know that this bacteria is a spore former, so it can lie dormant for years and reactivate whenever antibiotics are used or when her reserves are low. It may be a good idea to get her on probiotics once this is under control, to help prevent relapse. You will have to be vigilant, which you already are, so at least you are good to go in that department.

Jan Smiler
Jan Dollar
RM Rowans momMember
No pooping going on here and very distended again... Back to square one. No complaints by her, no fever, no vomiting. I don't get it. She has ate quite a bit it seems the soft foods and liquids have passed but once solid were introduced things stopped again. I do hear bowel sounds. But she is burping A LOT!

I am assuming IV Flagyl is next or some sort of imaging with contrast.
RM
L liz11Member
mary.. I just logged in to check on you and rowan. sorry to hear she hasn't made it over the hurdle all the way yet. Still sure seems like it could be a partial obstruction. When I get partial obstruction.. I am the belching queen!

is she off the vanc? have they confirmed the cdiff is gone?

maybe yes.. its time for some imaging. Sometimes that contrast stuff actually clears up partial obstructions in addition to giving the docs a better picture of what is going on inside her little belly.

whatever you do... Don't you let them release her until you are confident she is ok.
liz
L
RM Rowans momMember
They refuse to consult GI even though I requested it. They said she doesn't have a disease this is functional jpouch issues not inflammation and not their area. Ugh. So anyway we started IV Flagyl and no change yet so tomorrow looks like we will be doing the small bowel follow through tomorrow using a fluoroscopy with contrast. So apparently I wasn't crazy and now they are thinking I am was right all along.

They don't do balloon dilations usually bc they feel they just get narrow again. They like to remove laparoscopically to correct any narrowing. This was the fellow not the attending surgeon that told me this. They also do not do NG unless she is vomiting, so no decompression going to happen. They said we will just have to wait it out. Gosh this is taking forever today is day 5.
RM
ConnieConnieMember
Uh...so c. diff is not a disease?? Where are you that refuses to let her be evaluated by a GI? Once through surgery, a lot of people never see their surgeons again. All of my son's follow up in the 12 years since surgery has been his with his brilliant and much-loved ped. GI--through pouchitis, c. diff., several scopes, whatever. Of course it would have to be one experienced with pouch issues.
Connie
Jan DollarJan DollarModerator, RN, retired
OK, I can see their point. At least they are doing a better job explaining their treatment plan to you, even if it winds up in the same place you were directing them. I guess they have to follow their diagnostic scheme.

Unfortunately, there is a small child in the middle of this, not a toy, so every misstep must make you get unhinged! Presumably, the diagnosis will present itself. It is just the waiting..... Roll Eyes

Stay strong,

Jan Smiler
Jan Dollar
RM Rowans momMember
They told me Rowan will have a follow up with a GI after 4 years so long as no inflammation rears its ugly head pointing to a crohns diagnosis. They said she will be having her follow ups with her surgeon until she is 21 years of age.

The do not consider c.diff to be a disease but an over growth of the bacteria which already exists in the human body. They don't even get ID involved unless protocols shows a antibiotic resistant strain of c.diff.

She had a small bowel follow through study today, waiting on the results. Still NPO. Frowner. She is snoozing now.
RM
Jan DollarJan DollarModerator, RN, retired
Hmmm, I am getting a bit irritated here. It sounds like they are saying that the surgeon "owns" her. I have heard of this before, but it mystifies me. Why 21? She is not even a pediatric patient after age 18... But that is besides the point. I certainly can see staying with the surgeon for an eternity if both sides feel it is working well and everyone's needs are being met. But, this is beginning to sound like a power struggle, not patient care.

But, off the soap box, yes, I agree she still is in the realm of surgical care, since there still can be long term surgery related complications. Still, you are the parents, her advocates, and the only ones who can approve treatment. You don't want to alienate her providers, but you don't want to be a doormat either. What a terrible place to be in... Frowner

Jan Smiler
Jan Dollar
RM Rowans momMember
Preliminary results are in for small bowel follow thru no blockage or narrowing found. The contrast cleaned her out. Her distention is down and pipes are working. Nutritional panel in the morning. Hoping no need for TPN.

Praying her ileus is gone and she can eat tomorrow. They suggested PPN but I can't do that to her she blows veins really easily and we had to tortured her last year enough. She is drinking Nutren Jr though I would prefer Peptamen Jr. but we just started them at home and she won't drink them without cutting them with LF ice cream.

She is pooping some watery bile like after takedown but we are feeding her yogurt and the nutritional shakes and they do look like they are digesting. Trying to avoid vit/mineral loss. Might suggest NG Tube elemental formula bc the don't want to place a PICC for TPN.

Thoughts?
RM
Jan DollarJan DollarModerator, RN, retired
Can't imagine peptamin for a 4 year old. I was on it for only 3 weeks preop, and it was miserable. I actually looked forward to my Golytely prep before surgery! That's how bad it tastes! It's mostly for tube feedings, and those flavor packets are lousy.

I choked down 4 cans a day and filled in with clear liquids to stay off TPN...

Good luck. If need be, NG tube feedings will be better than TPN.

Jan Smiler
Jan Dollar
L liz11Member
that is good news that her distention is gone. Those CT with contrasts sometimes help get things flying through.
Yes, that peptamen stuff is horrid. Dr. shen had me on it for about 5months last year. I had to drink 3cans a day. Disgusting.

If she drinks it at home cut with ice cream.. why can't she do that at the hospital? I don't know the nutritional value and difference of any of the things you have mentioned, but if peptamen jr is the best... why not just bring in some ice cream for her to mix it with?

also I know they try to stay away from TPN if possible, because they want to encourage her eating and guts to start to function the way they should be. TPN can take away the appetite and thats another whole battle.
good luck today.
L
RM Rowans momMember
Rowan was readmitted on Christmas for dehydration with fever and diarrhea

Just so my side of the story is published... I am a complete control freak and this is how I made logic of what went down this month.
Rowan 5 year old Jpoucher from UC...
Beginning of Dec Rowan was hospitalized for a possible food blockage, after testing positive for c.diff. I was refused a requested ID consult. I was requesting this bc it just didnt seem right to me that she had c.diff never had it before and had not one single symptom of c.diff, but did have every symptom of a food blockage. This fact was ignored. Was told she had an ileus from the c.diff not a food blockage. This test was a false positive verified by ID 12 days after release and a new admittance to the hospital. They verified that a c.diff ileus is such a rare thing and people die from this and are usually in the ICU. This was not the case and this was their clear indicator that this was a false diagnosis. She was retested twice and it was negative both time. (people test positive for months after treatment even when they are no longer infectious) False positives are possible and false negatives are extrememly rare with the new rapid toxin testing. The Contrast from the fluoroscopy cleared her partial food blockage at her first admittance. The Vanco then destroyed her gut flora and gave her pouchitis which we are now treating with PO Flagyl and PO Cipro and Florastor following antibiotics with VSL #3.

thoughts anyone? Can large doses of Vanco without a reason for it cause this to happen?
RM
ConnieConnieMember
Tom has been on 1500 mg IV Vanco b.i.d. for three weeks and has three to go. When I asked about it causing PI a week ago, Jan said she did not think it likely. That said, it is definitely causing both stomach and pouch pain. He also had a recent day or two of low grade fever and currently has elevated wbc--but with a mouth full of canker sores, I'm thinking those things may be due to a virus.

Pouchitis could be verified with a scope, but I'm not sure Vanco would cause it. Also, 103 was a really high fever for PI.
Connie
RM Rowans momMember
She only got that high once, and at the time did have a warm heating pad on her so it probably was more like 102. Which jives with the fevers she got at the hospital. She is my fever kid... always gets a fever. Infectious disease tested her for everything possible and all came up negative. They are still growing cultures but so far all are not doing anything, 4 days later. We were released today with antibiotics for Pouchitis. She also had a scope and it showed Pouchitis and they took biopsies all showed As Pouchitis like inflammation. Nothing pointing to Crohns. Glad to be home. Maybe the Vanco destroyed her flora completely causing the Pouchitis.
RM

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