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C.diff, ileus, blockages, j-pouch

QueenGothel

QueenGothel

Location
Michigan, USA
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?
 
QueenGothel

QueenGothel

Location
Michigan, USA
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.
 
Tesscorm

Tesscorm

Moderator
Staff member
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!! :ghug: :ghug:
 
Patricia56

Patricia56

Location
Northern California, USA
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.
 
QueenGothel

QueenGothel

Location
Michigan, USA
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.
 
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Patricia56

Patricia56

Location
Northern California, USA
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.
 
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Sascot

Sascot

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!!
 
DustyKat

DustyKat

Super Moderator
You aren't crazy Mary...:hug:

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. :ghug:

Dusty. :heart:
 
rhosymynydd

rhosymynydd

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
 
izzi'smom

izzi'smom

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!
 
izzi'smom

izzi'smom

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 :heart:
 
C

crohnsinct

Well-known member
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!
 
QueenGothel

QueenGothel

Location
Michigan, USA
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. :ymad:

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?
 
Farmwife

Farmwife

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.
 
AZMOM

AZMOM

Moderator
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.
 
imaboveitall

imaboveitall

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 :Karl:
 
QueenGothel

QueenGothel

Location
Michigan, USA
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.
 
QueenGothel

QueenGothel

Location
Michigan, USA
AZMOM said:
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.
Click to expand...

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.
 
Farmwife

Farmwife

Normal I would agree but...she's NOT normal! She special and being special she and her mother should get all they ask for!:kiss:
 
kimmidwife

kimmidwife

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!
 
imaboveitall

imaboveitall

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 :eek:

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. :ghug:
 
izzi'smom

izzi'smom

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!!
 
imaboveitall

imaboveitall

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*)
 
Patricia56

Patricia56

Location
Northern California, USA
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].
Click to expand...
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.
 
QueenGothel

QueenGothel

Location
Michigan, USA
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.
 
Patricia56

Patricia56

Location
Northern California, USA
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.
 
imaboveitall

imaboveitall

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.
 
izzi'smom

izzi'smom

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.

:heart:
 
QueenGothel

QueenGothel

Location
Michigan, USA
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.
 
izzi'smom

izzi'smom

Glad to hear she explained everything in detail. I am surprised they started her off with dairy, but am hoping her bowel sounds continue and she is better quickly...sending our love!
 
Brian'sMom

Brian'sMom

Location
Midwest
C diff is really as dangerous as mentioned here? And did someone say Flagyl doesn't kill it off? I'm just curious. This thread is frightening to me a bit.
 
QueenGothel

QueenGothel

Location
Michigan, USA
Brian's mom it is more scary if you get a ileus from it. Bc Rowan doesn't have a colon it is my fear she will end up with a bowel obstruction, or started with one and end up in the OR. C.diff and surgery as you can imagine is a horrible outcome. The majority of people that die from c.diff yearly is due to surgery complications caused by c.diff. For the most part in normal circumstances, I believe it is easily controlled though the infection has been getting stronger according to studies. The good news is they are coming out with new treatments all the time. But as we all know IBDer are more prone to c.diff and are also more prone to have repeat surgeries.

Sorry we scared you but it can get scary in the worst circumstances.

Flagyl is the first line of defense. Vancomycin is the big guns for it. Oral Vancomycin with IV Flagyl is the weapon of mass destruction.
 
izzi'smom

izzi'smom

Kathy, an active C diff infection involves spores, which are super hardy and difficult to get rid of (bleach or HOT water do the trick). So if everything isn't sanitized properly, the spores can reinfect.
 
Brian'sMom

Brian'sMom

Location
Midwest
Thanks for the info! My son recently had a gastro type flu bug...but because of watery D they did a stool test and he tested positive for C diff. The results came after 4 days of illness..and 2 days of feeling great. He was going back to school and we had even done his Humira shot Sun (the 2nd day of feeling great). He never had any fever, and just 2 of the days were watery D. He's never tested positive for C Diff...so I was surprised. He's on flagyl now. But even before his first dose he was already back to 'logs'. The GI clinic never told us about the bleach...not just ordianary soap. I saw it here! I don't think any of us got it...but thanks GI docs!! (I keep my bathrooms clean...but I applied A&D ointment to his fissure that comes when he has lots of D. I used the soft soap in the bathroom to wash my hands, not bleach...ugh!)

Glad Rowan is doing better! HUGS
 
AZMOM

AZMOM

Moderator
Kathy - be cautious but don't be afraid......love your heart. C Diff is awful and Mary told you EXACTLY right. Flagyl first, Vanco second (or first depending on situation. Makes PERFECT sense to me for Rowan), neutron bomb of Vanco/IV Flagyl next.

Mary - I was going to ask you what, if anything, ID says about the vancomycin enemas. It is a hotly contested tx in our hospital. The chief of ID says she doesn't believe it to be effective and the new young ID doc likes to order it.

So glad Rowan's improving!!!!!

Love,

J.
 
kimmidwife

kimmidwife

Mary
Just checking in on you guys, so glad to hear Rowan is feeling a little better. Hopefully the surgeon is right and things will continue to progress in the right direction. Keeping my fingers crossed!
 
QueenGothel

QueenGothel

Location
Michigan, USA
izzi'smom said:
Glad to hear she explained everything in detail. I am surprised they started her off with dairy, but am hoping her bowel sounds continue and she is better quickly...sending our love!
Click to expand...
they left it up to me and i just always give potassium first bc she is so prone to getting low on it without her colon and all. she did had a bit of a tummy ache but passed a lot of gas with her bm tonight and said her belly felt so much better afterwards.

I just was thinking of soft foods and liquids nutrition bc she hadnt ate in a few days and if she vomits it might not be as painful to vomit.
 
QueenGothel

QueenGothel

Location
Michigan, USA
they never gave me my consult with ID or GI, but upon leaving I did run into Rowans old GI and she stopped to chat and said it sounded like the courses we were doing was a good one.:thumleft:
 
C

crohnsinct

Well-known member
Also checking in before logging off...and will check first thing! Praying that this is the turn around for Rowan and she will be home for her birthday or at the least Christmas!
 
Patricia56

Patricia56

Location
Northern California, USA
Glad to hear Rowan is doing better. It would be great if you could just skip all those "what if" scenarios being discussed earlier.

Has she had c. diff before? I wonder how long a course they will put her on since I'm assuming relapse prevention will be very high on everyone's list.

Again, I'm glad to hear things seem to be moving in a reassuring direction. The surgeon's observations sound like they exactly mirror my personal experiences with c. diff in family members.

All the best.
 
DustyKat

DustyKat

Super Moderator
Oh Mary, what an awful time you have had of things. :hug: I hope the signs you are now getting means that your little princess is on the mend. Fingers, toes and everything else crossed!

In my thoughts and prayers hun...:heart:

Dusty. xxx
 
kimmidwife

kimmidwife

Yay for passing gas that is definitly a good sign that the gut is working better! I am so glad to hear this news. As a nurse once the patient started passing gas we always knew things were starting to improve! Hope to hear continued good news and that she is home before Christmas and her birthday!
 
QueenGothel

QueenGothel

Location
Michigan, USA
We might go home today. They want her to eat her normal diet here and then if all goes well maybe be eating dinner at home tonight. Belly distention has gone down a lot. Her dads birthday is today and her birthday is the 20th. Though she will be home for her b-day and Christmas probably will not be doing a public appearance hence maybe missing her birthday but hopefully we will be good by Christmas.
 
Tesscorm

Tesscorm

Moderator
Staff member
I'm so glad to hear she's doing so much better!!! :banana: I bet you're both happy to be going home!! :ghug:
 
QueenGothel

QueenGothel

Location
Michigan, USA
Well ya know this was probably a good hospital visit as screwed up as that is to say. She had c.diff and no sign of inflammation so I feel a little bit of releif that there wasn't any of her normal obvious signs of IBD going on. A little less fearful of that shoe dropping that I have been fearing so much during this stay. Rowan is one that goes off the charts with every indicator when she had a colon. Her disease was never silent, it was more of a screamer.

French toast, Nutren Jr, Banana, 4 bites of mashed potaotes and a 1/2 slice of pizza no complaints. Hope all goes well. She is pretty distended again but she just ate again so. We will see. Got my hawk eye on her. :shifty:
 
imaboveitall

imaboveitall

:medal1: YAY for Rowan!
Bizarre sentence to write: I am so glad it is c-diff!
Why in the hell she got it is still bugging me.
Very happy to hear her gut has improved and she's being discharged. Something about her story really gets to me. I hope she has an excellent Christmas, I bet you'll make sure of that!

Much love :rosette2:
 
QueenGothel

QueenGothel

Location
Michigan, USA
Well I just saw ID in the hallway and recognized them from the last time Rowan was here they were involved in her case. I introduced myself and told them I had requested a consult and they stopped in and talked to me. They actually said they do not endorse probiotic S. Boulardii for c.diff. They said the do not have any studies that prove their effectiveness or what is in them. SHOCKED:eek2: the studies show they are effective in helping with antiboitic associated diarrheal but not a treatment for c.diff or any other ID.

They think the chances anyone healthy will get c.diff in my house is pretty slim and to wash our hands often and this and bleaching the toilet, closing the lid before flushing will stop the spread and she can go to family functions, so long as she has a private toilet!:thumright:

Surprised at the ID response to the Florastor. They said bc Rowan has IBD and c.diff of the small intestines she is might always be a carrier from now on. Regardless, we will be starting a Florastor when we get home.
 
Johnnysmom

Johnnysmom

Hugs to you Mary. Bless Rowan's heart. I will be praying for you both.

Keep those Docs on their toes, I think you have been very instrumental in Rowan getting through this last year.

Hoping you all have a good night tonight and Rowan gets some rest hun.

Hang in there :heart:
 
QueenGothel

QueenGothel

Location
Michigan, USA
I decide to trust the doctors and here we are back to square one. Idk wtf ya know. Ugh... Thanks all waiting for the surgeon to give me her new opinion. Idk what the course will be. Just frustrated to spend extra time doing more of the same.

She is acting like her spunky self playing, running around, making jokes and is still very hungry. Weirdest thing ever. You'd think if she were bound up she would vomit.
 
QueenGothel

QueenGothel

Location
Michigan, USA
They really didn't say much about the belly distention. They still think ileus I think. They want to give her a night more to poop this out. They said to give the vanco more time to work and to be have patience. I am going to start getting pushy about verification of partial blockage tomorrow. Wether it's a CT, MRI, ultrasound with contrast or a scope I am going to get pushy if she doesn't give me a solid poop tonight. I got my hopes up I guess. I should've known better to trust anyone. Requesting GI consult I gave the surgeons enough time I think. I want a second opinion. She is burping a lot so I think she has an partial obstruction.

The doctor is a woman so I can't use my vice. Damnit.
 
Farmwife

Farmwife

I'll being pray for her to poo!
Try to get some sleep tonight. You'll need your straight to push tomorrow. Just say the word and my rolling pin is yours.
 
imaboveitall

imaboveitall

Oh Mary...I feared this. Hence my "cautious" happiness.
I really really hope I am wrong but I think she has something else amiss and I know you think this too.

Thinking of you guys often. I looked at her photo again, it sounds weird to hurt for a stranger but I am for her and you. :heart:
 
Patricia56

Patricia56

Location
Northern California, USA
Darn. :stinks: :stinks: :stinks:

bad words :poop::poop::poop:

Thankful she's not in any apparent pain, unlike her mom no doubt

:ybatty: :angry-banghead: :voodoo:

Can she chew gum? Fits under the "might help, can't hurt" category.
 
my little penguin

my little penguin

Moderator
Staff member
Not understanding the sedation for the mre - I would have assume Motts has the same as ours . Any child 4 and over has the option of using the movie googles for over an hour of sitting still during the mre .
Under 4 = sedation
I guess we must be really lucky then
 
Charleigh

Charleigh

Location
Southern USA
Well I will be praying for poo too ~ geesh, I have never prayed over poo so much in my life as I do now (between mine and all of these forum babies :lol:)

Hugs
 
AZMOM

AZMOM

Moderator
MLP - Vanderbilt children's sedates if MRI is lengthy as old as age 9 (maybe older, Claires just not older yet). How long is the MRE exam?

Praying, Mary!!!

J.
 
M

momoftwinboys

Mary I was so excited for you guys this morning! and now deflated... and I have never met you or Rowan.
I can not imagine having to dealing with what you guys are going thru and have been thru....You are doing an incredible job!
Sending positive thoughts your way. Hang in there.
 
kimmidwife

kimmidwife

Mary,what about a fluoroscopy? It uses less radiation then a regular ct but is better then a plain X-ray. Did she have to drink any contrast or barium for better visualization?
 
kimmidwife

kimmidwife

A floroscopy is like a live time X-ray. They have you drink contrast and then do multiple pictures watching it move through the intestines. It gives a better visualization of what the bowels are doing.
 
QueenGothel

QueenGothel

Location
Michigan, USA
This must have been what the did to check Rowans J-pouch for leaks but they went through the rectum. They called it an X-ray with contrast and I watched it as they did it and it looked kinda like an X-ray. I will ask... Thank you.
 
NMMom

NMMom

Mary, I'm so sorry I'm just now reading what's been going on for you and Rowan. I am so sorry you are going through this. Ellie had c. Diff for a long time which lead us to her dx of UC. You have my number please call if you want to talk about any of this. I know it's a bit different b/c of Rowan's jpouch but I know a bit of what your dealing with.

I'm on my tablet and can't type too well. Sorry!

Hugs and prayers your way.
 
my little penguin

my little penguin

Moderator
Staff member
J - process of MRI can take over a hour or two.
DS has had two without sedation - one at age 6 another at age 8.
Both times he wore fancy wrap around movie google - think astronaut - which blocked out sound and vision etc for the movie he picked to play.
We brought a DVD from home-
So very doable at a younger age - no radiation and no anethesisa risk.

Mary- hope they can come up with a good plan tonight .
 
izzi'smom

izzi'smom

Mary,

My heart hurts for you. I'm sorry for all that you're going through.

She probably had a barium enema before . Because she has no colon, they may be able to use this in place of the CT. It's true that involves less radiation; however, it is not generally done to rule out an obstruction.

Isabel had an MRI at age 4 without sedation. I believe that rowan can do it as she is almost 4.

Add any rate, I hope that the results of the X ray are good and that you are getting some rest tonight. So relieved that she isn't in any pain. Hoping tomorrow is a better day for you. :heart:
 
QueenGothel

QueenGothel

Location
Michigan, USA
Of course the x-rays were a waste of time. They said everything looks the same. Basically yes we see loops.

They switched her to From oral Vanco to IV Flagyl. The reason being that the Vanco might not be getting where it needs to go bc of the ileus/narrowing. This is today's plan if no real improvement in bowel function they plan to do an upper GI follow through tomorrow using the fluoroscopy and barium.

She is only allowed to have frozen or reg. yogurt, Nutren Jr, water, Popsicles and pudding/Jello. Basically all softs.

The issue with diagnosis seems to be some where between ileus caused by c.diff or c.diff caused by narrowing/blockage. Since she doesn't have specific symptoms of either just the symptoms of both which is distention and slowed bowels, which could be ileus or narrowing. They are hesitant to use radiation for either diagnosis since regardless of who is right they both usually subsided on their own with time.

Back to waiting. We are getting pretty board around here! She's painted about 8 Christmas ornaments and played every game I can find that can be washed. She is starving and keeps begging for food. I keep giving her more Nutren Jrs. ;)

I asked for a GIs consult and she said she would but feels it will not be of much help. They will call her case interesting and thank them for letting them sit in. She said if the do not have a disease GI really isn't a good consult for Rowan anymore.
Thanks everyone!
 
Patricia56

Patricia56

Location
Northern California, USA
Gahhhh.

Why barium?? It will so gunk up the works.

How about that stuff I mentioned earlier - Gastrografin? It's approved in Canada for pediatric use and might actually have some therapeutic benefit.

And how about adding some Rifampin? probably too soon for that and probably not approved for peds or this would be off label. never mind.

Where is ID? Are they the ones that switched her to IV Flagyl? Mutter, mutter, probably should have been on IV Flagyl as soon as they suspected ileus. surprised none of us thought of that.
 
NMMom

NMMom

Hey, just read Patricia's post and had to chime in. Ellie was on literally months of oral vanc and oral flagyl but was finally got rid of her c. Diff was vanc and rifampin at the same time. Just an fyi
 
imaboveitall

imaboveitall

Oh Mary...:heart:
I am with Patricia. If her motility is poor that barium shall sit in there and not move. It is constipating on its own.
I lean towards the ileus causing the c-diff due to poor motility creating a good chance for overgrowth.

I just read about Stephen and now Rowan...my heart hurts.
I hate this. Hate it and the littlest ones really hurt.
I am so sorry.
Thank God she has you for a mother. Don't stop directing her care; you have been right it seems all along. :medal1:
 
StarGirrrrl

StarGirrrrl

Location
UNITED KINGDOM
I'm no Dr but the last thing I would use is Barium in this situation.

I had a Bariun X-Ray and drank loads after, but that evening I felt it moving so slowly through my intestines and had some pains.
 
Farmwife

Farmwife

yeah the barium enema Grace has never even came out until two days later. Doc was getting worried.

I hope all is still going well.
Has her pooing improved at all?
 
QueenGothel

QueenGothel

Location
Michigan, USA
Oh they didn't say Barium sorry the word was contrast.

My biggest hurdle really seems to be getting the surgeons egos down to my level. They are now at the point finally where they are listening bc all it can be if not their diagnosis is what I told them was going on before she tested positive for c.diff. Very frustrating to feel like I am not heard. They listen but always do what they think it is. This all started when she woofed down some pizza and got a belly ache that night, from then on she has been distended.

ID is not involved in her direct care. Surgeon follows protocol already set by ID. I asked they said they are following protocols. This is why they are now doing the IV Flagyl.

They started with Oral Vanco instead of ANY Flagyl bc of the neuropathy factor. Which hasn't happened so previously when she was on Flagyl she said her hands were cracking. They assumed it meant she was having neuropathy but I personally think she was hallucinating from high fever and morphine. At least now we know she isn't having any neuropathy and is no longer intolerant.

I have a feeling tomorrow is just going to be a very bad day. :thumbdown:

They do not think they will have to do a long course of antibiotics bc remember she doesn't have a colon. So this is a rare thing to even happen to her. They think once thing start moving again she will respond very quickly. We will see.
 
QueenGothel

QueenGothel

Location
Michigan, USA
Well I guess I can't say that about Rowan surgeon who knows Rowan and has been through all the craziness with us. She is more aware that I am up to speed on the protocols and proper places to find info on the Internet. When other doctors talk to me they assume I get all my info from Wikipedia and Webmd which I have learned they hate. I try to stick with .orgs and pubmed etc whenever they ask where am got my info. Her doctor calls me "The Hugger" lol bc she has to hug me all the time bc weird shit is always happening to us.

The surgeon attending now is very nice and does listen and does take the time to explain her diagnosis. She has said my thought could be what has happened she just says I know she has c.diff, I treat c.diff and hope that this gets things working. Rowans symptoms are not the normal so I realize they are kinda stumped also, and I am sure are not used to being this way.
 
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Patricia56

Patricia56

Location
Northern California, USA
Wanted to make sure you could read this post even on a tiny little screen...

Pardon my shouting but THIS IS WHY THEY NEED ID IN THERE.

Please note the part of this abstract that says that of the 56 cases they could find info on 32% died and 60% were in ICU.

http://www.ncbi.nlm.nih.gov/pubmed/21334446

Clostridium difficile enteritis: a review and pooled analysis of the cases.

Abstract
INTRODUCTION:
Clostridium difficile is the most common cause of healthcare-associated infection diarrhea and usually restricted to infection of the colon. However, small bowel involvement of C. difficile infection has been reported. We performed a literature review and pooled analysis of the reported cases of C. difficile enteritis

METHOD:
A Pubmed literature database search and pooled analysis of the reported cases of C. difficile enteritis.

RESULTS:
56 cases of C. difficile enteritis have been reported from 1980 to 2010; 48 cases were published since 2001. Median age was 55 years. 27 patients (48.2%) were female. 29 patients (51.8%) had inflammatory bowel disease (IBD) - Crohn's disease or ulcerative colitis and 20 patients (35.7%) had predisposing medical condition(s) that might lead to an immunoincompetent state. 33 patients (58.9%) had colectomy with ileostomy and 13 patients (23.2%) had other small and/or large bowel surgery. Thirty four patients (60.7%) received ICU management and 18 patients (32.1%) died. We categorized the patients into two groups, 38 survivors (67.9%) 18 non-survivors (32.1%). Significantly older age was noted in non-survivors. Median age was 48 years and 66 years, respectively for survivors and non-survivors, P < 0.001. There were more patients with predisposing medical condition(s) among non-survivors, (13/18, 72.2%) than among survivors (7/38, 18.4%), P < 0.001.

CONCLUSIONS:
C. difficile enteritis is still rare, however it seems to be increasingly reported in recent years. Surgically altered intestinal anatomies, advanced age, predisposing medical condition(s) that might lead to immunoincompetence appear to be at risk for developing C. difficile enteritis. Recognition of C. difficile infection not only in the colon but also in the small bowel may lead to improved outcomes.​

As for the oral contrast I do not see why it cannot be used NOW as a standalone treatment or if they insist they can take one more expletive xray as an excuse for giving it to her. And I'd like to see them argue with a Cochrane Review.

http://www.ncbi.nlm.nih.gov/pubmed/17636770

Cochrane Review 2007

Oral water soluble contrast for the management of adhesive small bowel obstruction.
Authors Conclusion: Published literature strongly supports the use of water-soluble contrast as a predictive test for non-operative resolution of adhesive small bowel obstruction. Although Gastrografin does not cause resolution of small bowel obstruction there is strong evidence that it reduces hospital stay in those not requiring surgery.​
 
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QueenGothel

QueenGothel

Location
Michigan, USA
Patricia yes I have read these and have brought this up and requested ID. ID has reviewed Rowans case and have given her surgeon a protocol. They do not feel she is very sick and that the c.diff is controlled. They are trying to figure out now why the ileus or if she is having something else going on which could have exasperated the c.diff in the first place. If things change or she becomes sicker they will bring them in for a direct consult.

I am very concerned, but if ID doesn't think they need to be in hear looking at her I don't know how I am to change there minds. This documents also states they were in ICU and Rowan has no symptoms of c.diff. It doesn't smell, she is not dehydrated, she is pooping just not enough, no fever, and no pain. I hope to god she continues to improve.

What do you expect me to do? I ask 4 different doctors for this consult and when she needed the consult for her last surgery last time ID was hear everyday. Basically during her take down they just popped in and changed her meds and left from Vanco to Cipro for her infections. I don't know what your experience with ID has been but from my experience they guide us to the right meds to kill things off with minimal damage to the patient.
 
Patricia56

Patricia56

Location
Northern California, USA
:eek:Please forgive me for yelling. It was absolutely not meant in any way as a criticism.

Clearly I am getting quite worked up about this situation long distance and apparently had misunderstood some aspects of the situation.

It's a good thing I can't jump in my car and drive up there. You would probably not appreciate my presence and it would probably make no difference except to amuse your daughter.

"Look at the crazy lady with the purple hair Mommy! Why are the people in uniforms dragging her away?":dance:

Well as long as she's safe and you're sane that's what counts.

We won't worry about my sanity since clearly that is a lost cause.:sign0085:
 
Farmwife

Farmwife

Your doing great and we all love you guys.:ghug:
Have a good rest tonight and I pray your home before you know it.
Tell Rowan, Grace says get better.
 
AZMOM

AZMOM

Moderator
Mary - We're all right behind you, dear. Ferocious IBD moms just periodically have to YELL.

From what I can see you're asking all the right things and pushing appropriately. I know you must be exhausted and want her to be better. SHE WILL GET BETTER.

Loads of <3,

J.

PS I remember during our last inpatient isolation stint when Claire scowled at me and said,"Uh....no....I don't want to make another keychain!" :). Keychains, Christmas ornaments, whatever - that sweet girl needs to get better and go home!

Keep posting.....we'll keep praying -

J.
 
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