C.diff, ileus, blockages, j-pouch

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She is pooping a little more and passed some gas... Yay but still distended:shifty-t:

11am we go for fluoroscopy and contrast not barium. Asked the doctor what the contrast would be and she mentioned Gastrografin made it a point to write down not to use barium. She hates Barium and rarely used it, says it dyes the intestines to much.

She is NPO

More to come...fingers crossed we find an easy fix...XX
 
Where else would people cheer over the passage of bodily substances, I ask you?

Yaaaaaaay Rowan!

Would it be appropriate here to chant something over and over like "pass that gas, pass that gas, pass that gas"?

A more substantive chant might be "Don't know when but poop again, we like it, we like it!" chanted to the rhythm of the football chant "First and 10, do it again, we like it, we like it"

Ok, I'll stop now. I think there's an imp living in my skull and someone let it out...

Hope all goes well in radiology and you finally have some answers that don't involve any drastic treatments.
 
Im with crohnsinct in the swim cheers. Instead of Pull, Pull, Pull like we yell during a good breaststroke race, we'll shout Gooooooooooo Push Push Push Gooooooooooooo.

Thinking of you all -

J.
 
Well we are in the process now of doing the follow through study. We are 3 hours in. Taking pictures every hour or so. Her stool has turned to liquid and past a lot of gas just now. Funny she said mom "I gotta go"I said "poo" and she says "I got farts in there that want to come out! RIGHT NOW" Either we are seeing the contrast pass or she got really loose and maybe the ileus is gone. There is a new attending today. She thinks it could be possible that Rowan had a food blockage that caused the c.diff which caused an ileus. Lots of speculation so hopefully this follow thru will show us more facts. I am just hoping for no narrowing anywhere.
 
Her belly distention is completely gone. She is a skinny mini again. Weird she pooped 300 cc's and farted and now it is gone. Hoping for a miracle here. Maybe food tonight. Still waiting on doctors to round again.
 
Mary, excellent, I think she had a blockage that resolved. Thank God. :soledance: :thumright:
Will be interested in what they say about that and do next.

Much love.
 
The preliminary results are back and show ileus not a bowel obstruction. They order PPN/Lipids which I refused bc last year she was blowing veins every 3 hours from it. I said since isn't NPO let's give her Nutren Jrs for nutrition. They said she will probably become distended again. Which will happen regardless if we are feeding her. I hate giving nutrition through the vein unless we have a PICC. They said it was just for tonight so I said what a night going to do? Maybe I am wrong but I don't want her to start getting poked all the time and be afraid of this hospital like she was last year. She has finally got over her fear of doctors and nurses I don't want to ruin her. So we are still doing IV Flagyl. She is only having soft food once again. Any thoughts?
 
My thoughts are:
TPN for "one night" makes little sense to me.
Why did she develop an ileus?
I'd stick with the Nutren for now OR TPN via PICC longer term while they figure out if her sm bowel is having motility issues and WHY.
 
What about an elemental like elecare or neocate jr through an ng tube?
If she won't drink it or E028 splash is flavored juice box all three are amino acid based.

No pokes and lets a large portion of her intestine heal no soft food needed.
Nutrients jr is whole proteins so .... Hard for the intestine to absorb.
Semi elemental is easier ( peptamen jr) and amino acid easiest .
Hugs
 
The issue is she won't drink the Peptamen Jr without me cutting it with lactose free ice cream. I guess I could ask for NG feeds but they were trying to avoid it bc she will not talk or communicate at all with it in. I will request Peptamen Jr and see if I can get her to drink some. Maybe I can mix the Peptamen with the Nutren Jr?

The Ileus was caused by the c.diff another rare response not seen very often. I requested to get a couple Peptamen Jrs to try to get her to drink them. Fingers crossed. Thanks all.
 
Also ask child life if they have buzzy bee.
It takes away pain for iv and blood draws .
http://www.buzzy4shots.com/

DS uses it all the time for Iv's so much so the infusion center at our hospital ordered some for the rest of the patients since they saw it in action
 
Ask about the e028 splash they are in juice boxes and some kids actually drink them since the are flavored orange pineapple is not too bad or grape worth a shot for her to try to drink
 
She won't drink juice at all. That is one hurdle I can't get her to jump and juice is kinda a no no for jpouch so I don't push her. She loves the Nutren Jr and I was working on getting her to that level with the Peptamen but then we ended up here. :(
 
E028 is not juice at all but the flavor might help.
DS refuses all juice as well but is willing to drink the e028 on occasion.
Hope she will drink the peptamen - we found long straws ( places formula past taste buds) and plugging his nose also helped.
 
They don't allow straws it increases her gas issues. Gas being the cause of the distention, I am going to smuggle a couple peptamens in tomorrow. I guess they can't get them tonight because nutrition is gone for the day. This way I do not have to wait.
 
What about a sports bottle with a soft spout?
Or hydration collapsible packs with peptamen in it no air and bypass the taste buds .
Without a straw I would blame her for not wanting it...
 
Mary,
Sorry to hear that she is still having issues. Caitlyn drank the peptamin jr with out issues as long as it was cold. She said it did not taste that bad. I agree with the others that TPN for one night makes Absolutly no sense. Keeping her in our thoughts and prayers!
 
well if the point is to use the particular formula then it would seem that mixing it with ice cream of any kind would as you say defeat the purpose. but it depends on the exact purpose.

i think you are trying to use a formula that is "elemental" in the sense that it has the big proteins broken down at least part ways.

So adding ice cream would add big proteins back in - especially milk proteins which I have been told are among the most difficult to digest.

:(


using a covered cup with straw and super cold formula is usually the best way to deal with the smell problem.

I wonder if you could use something else with a strong scent like peppermint or juicy fruit gum to distract her from the smell. if adding it to the formula would be a problem maybe put it on her nose? I can see it now - a wad of gum stuck to her nose while she drinks her peptamen...:ylol2:

Sippy cup?
 
Shocked they suggested the PPN to begin with being they haven't taken any blood in days. That's another thing they will poke her daily for that I would soon get a PICC put in or do nutrition through the NG. She doesnt like the NG... Who does really? But at least it only takes moments to put it in. I would rather do that than ppn.
 
She hates the flavor of juice, pukes it up. Weird I know. Damnit, I will figure something out when nutrition comes down tomorrow. Something is gonna have to give.
 
It was my understanding that giving PN through peripheral veins was not acceptable practice because it damaged the veins. The PN/TPN formula had to be delivered into the superior vena cava for it to be safe for the patient.

I am a somewhat shocked that they would want to do this even for 1 night to a 4 yo.

I completely agree with declining it. I assume her labs are not showing signs of severe nutritional stress that would put her in danger. However if that were the case then it still wouldn't make sense because you would want to treat that for more than one #@$ day.

Either make a case for needing it for several days/longer in which case you place a PICC or forget it.
 
Your right ice cream in peptamen defeats the purpose however some Gi ok adding pure sugar to elemental only to make it more palatable in the beginning so maybe you could ask about that since sugar is not a protein and D is not an issue. Adding sugar to the peptamen jr
If you end up with an ng I would ask about pure elemental such as elecare since it is so much easier on the gut.
Hugs to you and her
 
I agree about the NG vs. ppn. The risks of a PICC far, far outweigh the possible issues and risks or problems with an NG. As long as she is able to get adequate nutrition through her gut if it's delivered via NG then there is no reason to do ppn as far as I can tell.
 
http://www.practicalgastro.com/pdf/November12/Joshi.pdf

2012 November Volume: XXXVI Issue: 11
Inflammatory Bowel Disease: A Practical Approach, Series #79
Clostridium Difficile Infection in Patients with Inflammatory Bowel Disease
N.M. Joshi, D.S. Rampton
Patients with inflammatory bowel disease (IBD) are at higher risk of developing Clostridium difficile infection (CDI) than are those without; patients with both IBD and CDI also appear to have poorer outcomes than those with CDI alone. Here we discuss testing and treatment of CDI complicating IBD.
Click to expand...

Just out in nov not sure it will help but.....
 
2009 March Volume: XXXIII Issue: 3
NUTRITION ISSUES IN GASTROENTEROLOGY, SERIES #72
Enteral Feeding: Should It Be Continued in the Patient with Clostridium Difficile Enterocolitis?
Mark H. DeLegge, Amy Berry
The authors ask, "What evidence is there to support withholding of enteral feeding in the patient with C.diff?" They answer, "For now, there is no good physiologic reason that EN should be withheld in patients with active C. diff enterocolitis without clinical signs indicating that the clinician should do it."
Click to expand...

http://www.practicalgastro.com/pdf/March09/DeLeggeArticle.pdf


Stuff about nutrition with cdiff
Again not sure if it applies
 
I think the main issue is the ileus. In regards to her nutrition I now think a GI could help better to figure out the nutrition factor. Does an ileus slow absorbtion or anything? They might have a logical reason, but they didn't share it so I declined the PPN. Last time she had PPN she was covered in bruises and blowing veins every.3-6 hours. So not a good plan.

Thanks for all the suggestions! Much appreciated!
 
I think it is time for the big guns oral vanco with IV Flagyl. Will discuss with the doctor tomorrow. I am home tonight so unfortunately I probably won't be there for the early morning rounds. Ugh! Reading, studying, and frustrated completely. Will try pushing again for the ID and GI consult we do have a new attending Surgeon and she was the one whom did bedside surgery to remove Rowans omentum so I am hoping she will take what I say and run with it. Enough is enough, I want to go home already.

I am totally stressed out and have the D myself and my germaphobia is coming out and I am worried I now have c.diff. Not to meantion reading all this stuff will totally freak give one the he-be-g-bes. So gross! I did eat quesadilla tonight so I am hoping my stink is that. wouldn't that just be my freaking luck.
 
Hmm she is pooping a lot some water some chunks. Maybe the ileus is gone and we can start feeds? God I hope so.:poop:

Blood draw in the morning. Hope nutrition is not too effected by the pooping.

Good night all!
 
Mary, I missed logging on yesterday. But an ileus IS an obstruction. Partial or complete, the passage of food is prohibited. You were right.

Sending love and hugs.
 
They were calling it a pseudo obstruction. I am just glad things are moving again. Which does happen with c.diff though people are usually much much sicker looking and usually are in ICU. Maybe I was right and the contrast moved it along? Regardless of who's right I hope she can eat today. She is sooo hungry.
 
We are introducing food today since she so well with Nutren Shakes yesterday. The dietician (not a doctor) came by to drop her shakes and said she would drop off a elecare vanilla to see if she likes it. :dance:
 
Dietician/nutritional doctor came by and said elecare would not be covered and is very expensive. $60 a can. Is going to drop off some PediaSure Peptide said it tastes better than Peptamen and to give it a shot. She thinks my adding the ice cream does defeat the purpose also.

She is eating and pooping and passing gas. If all keeps going well we are going home tomorrow morning.
 
Awesome to hear, little star...:medal1: doing better...

Pediasure Peptide is what V uses. It isn't elemental, not as "broken down" as Elecare or EO28.

Will be checking on you two often :kiss:
 
$60 a can!!!!!! What is in that stuff?

Glad to hear things are moving in the right direction. :)

((((Hugs))))) to you Momma and hoping you will both be home tomorrow!
 
Infuriates me that money is an issue here. *&$@# insurance companies. Glad to hear she is faring better and you continue to be in my thoughts. :)
 
They said she is tolerating the Nutren well bc her nutritional numbers have improved since she came in. They think they will do even better with the PediaSure Peptide. She liked it and I didn't have to add ice cream. Good news not distended but not really pooping but that could be a good thing that she has slowed down and is not bowel dumping anymore. They switched her from IV Flagyl back to oral Vancomycin. No IV tonight either. She is thrilled to not be hooked up to it.
 
Home tomorrow. Shockingly this was not a very scary hospitalization for Rowan only two IV pokes and two blood draws and lots of X-rays. She was a real trooper! She is pooping normal now, having some burn but once we get to our bidet I think she will be happy again!

:ghug: Thanks for all the help with figuring this mess out.
 
:mario2: :hug::yoshijumpjoy: :jokercolor:: :cookie: :sheep: :clown: :Flower: :applause: A parade of cute emoticons that I like
Well done Mary and Rowan the :medal1:
 
I have my fingers crossed you are all home as well for Rowans BIRTHDAY this week...sending happy, healthy thoughts!!
 
I hope all went well for Rowan and you managed to break free!

Sending loads of love, luck and healing thoughts your way...:ghug::heart::ghug:

Dusty. xxx
 
Awesome News! So happy for you both!

But hey! what is with the glamour shot avatar? Are you trying to make the rest of us look bad? You look so sweet and angelic...not at all like the foul mouth ball vice toting thug we all know you are...I am definitly going to have to remove the makeup less car tub hideous picture of me now!
 
Don't let the makeup fool you. I am still the foul mouthed, vice toting, :devil:

The devils biggest accomplishment was convincing the world he didn't exist! lol
 
images
 
So happy Rowan's finally home!! :banana: :banana:

And, agree re the picture - great picture!!! :thumright:
 
Rowan is still pooping and all but is kinda distended again granted my mom had her so she probably ate a lot. The weird thing is she is having formed turds? Could this be from the vanco. I know it sounds crazy to think this but she had formed turds while on Cipro last August. Maybe it is the Florastor going to titrate her to one a day instead of the recommended two. No loperamide going in or slower downers. It is just odd.
 
Her belly is still distended and it hurts her. I might be going back into the ER tonight or clinic tomorrow morning. Ugh. Her birthday is the 20th. Something is just not right still.
 
She just passed a ton of gas going with liquid diet tomorrow. Wtf? Enough is enough already. Geez Louise!

Dustykat does anyone know if PO Vancomycin can cause constipation? She is passing formed stools. With a jpouch... Huh how is this even physically possible? She was a constipated UCer and now a jpoucher. Doesn't Jive! HELP!

C.diff, no colon jpoucher on antibiotics and having formed stools without any other meds. Is this even physically possible?

Should I start a new thread? Where should I throw this one?
 
OK, I'm been meaning to type this.

I was told by ID at Devos that IF Grace tends toward constipation (which she does now), that might cause a breeding ground for c diff again. Make sense, they told you the same reasoning. However, when I told the ID nurse she has NO diarrhea, the nurse said IF the c diff is in the upper GI track, she might not have the runs. So I was under the impression you can get c diff ANYWHERE in the track.
Can you call ID at Mott's? Talk to them directly. Maybe demand a meeting?

:shifty-t:But this was ID at Devos telling me, maybe they know more since more Michigan State fans go there.:thumleft:

:lol2:

We might be in the same boat. Grace has taken real ill and we might be off to the hospital.:yfaint:
 
Well that makes sense about the constipation. Her distention has gone down completely in her sleep. I am avoiding gas /constipating foods today. Bc she never has formed stools I was feeding her the normal foods bananas, mash potatoes, Rice Krispies, cheese, Milk. So today Idk what I am doing but we are winging it lots of nutritional shakes are gonna be pushed until this thing is gone. I hope to god it doesn't show it's ugly head again. I really don't want to do FT, it is a fight I don't want to have with her surgeon. I just have a feeling they are not going to be in support of it. Fingers crossed and praying.

Farmwife, I hope she is feeling better today and makes you feel like your nuts like I feel this morning. I have a feeling though Rowans distention will be back this evening. :(
 
Last edited:
Called the clinic still pooping but no farting going on and her belly is hugely distended. They told me to glove up and try to manually release it. It didn't work out, she called it a nightmare. :( they don't think she need to come in and yes her birthday is tomorrow. They are contacting her surgeon.

Talk with the surgeon about FT though she doesn't know much about it is looking into it further and is going to talk with some colleagues about it. I told her I would like it to be a plan B if this doesn't start resolving quickly and before they want to explore via OR. She doesn't think it will get to that point and I hope to god they are right.
 
Fecal transplant, they do them for refractory C diff, not as an initial treatment. Why? I don't know bc the success rate is higher than a treatment of vancomycin. Granted the subjects in the study all also have a colon. Very scared and completely frustrated with her current distention. I hear bowel sounds which is a plus but the gas is completely stuck. I have been exercising her and marching in place, downward dog yoga poses and no gas is coming out. Gave her an apple which is not on our normal list hoping it breaks something through. Stinks bc now we are skipping the Peptamen bc the nurse thinks it might cause excess gas, she is double checking this factor. Idk how to get the distention down.

I am officially the worst mother ever bc I just yelled at her like a psycho bc she was refusing to do the yoga stretches with me. Had to say ok go get dressed and we can push an NG tube down your nose and get it out that way then. Didn't help the situation and was poor judgment on my part. She needs to understand I do these thing to help her not punish her. Not to mention all the crying just added more air to the distention. Seriously hating everything at this point. I need a break through. Something gotta give. Just Fart already. Ugh! All I seem to do is regret lately, I have reached my breaking point I fear and don't know how to get back up from it.
 
Devos Hospital is doing these!!!!!
Grace's GI said when we first went there that he sees great promise in this FT treatment.

You might want to think about crossing the state my friend. We'll be there on the 27th.:D
 
MARY :kiss:you've been from hell and back. Not just this but all of it. You thought it was finally getting back to normal. You thought you could breath again. Give yourself time and Rowan also.
You'll get answers soon. :heart:This to shall pass.:heart:
 
Yes I informed Rowan surgeon about Devos and Cleveland Clinic doing them. But the issue is these people also have a colon, the anatomy is different and idk if they are willing to go that route. It hasn't really been used in jpoucher especially not pediatric jpouchers. :(. And is only in cases of repeat c.diff relapse, where this is her first diagnosis.
 
Yay for gas! :stinks: thankful some came out. Hopefully it keeps coming out now that I got her stools soft again! Fingers crossed I have don't something right today.
 
Ya for gas.

Your right, you have to have it repeatably. In one of your studies you put on your thread for c diff it made mentioned to the pulse or tamper method for the drugs.
Do you know more about this?
 
No not much, her surgeon said she might want to do a taper they usually do not do repeat c.diff tests if there are no symptoms following the treatment. But Rowan case is not normal and she wants to do both toxin and antigen cdiff testing and if either come up positive she will want to do a taper of the Vanco.

She just passed more gas! Yay
 
Sorry to hear you are struggling. I'm glad she is managing to pass some gas, hope it continues. I hope you manage to get some down time, so you can try to relax. It is so hard when it is one thing after another. Hope you mom is doing alright too.
 
Can she swim at the Y or some where to get those legs / gut moving?
Or play in the tub kicking with supervision???
 
Yes she needs a bath tonight so we will give that a go. She is playing her fisher price bike riding game now. Hoping the activity will help her.

My mom is doing surprisingly well after this lipotripsy kidney treatment. Her pain comes and goes as she passes the stones.

My Aunt is in the hospital with a diverticulitis episode and on Friday my uncle is having his ileostomy take down, good news there his cancer screening came back good. They are hooking the colon back up now that the cancer has been removed.

What is will all the gut issues in my family this year. Crazy!
 
Wow, Mary, you have had so much going on... I really hope you manage to get a bit of rest for yourself and that Rowan just simply starts to get seriously better!!!! You've been such a great mom and an inspiration to everyone!! You certainly deserve some 'down' time and the chance to just enjoy Christmas!!! Thinking of you and sending lots of wishes that things improve all around!!! :ghug: :ghug:
 
Oh sometimes I think I could just snap. Luckily I don't really feel anything anymore. I rarely cry, just numb now. Probably a good thing.

Just got the call my aunt is having a colonoscopy and if they see what they suspect they are going to remove the portion of her instines that is causing the trouble. She is at a rinky dink hospital. Not really comfortable with that. I am sure the surgeon are good at what they do. I just like big hospitals in case weird shit happens, you have access to everything you might need.
 
I just found this:

vancomycin Side Effects


Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common
Abdominal or stomach pain
back pain
bitter or unpleasant taste
excess air or gas in the stomach or intestines
headache
mouth irritation
passing gas
 
So what is the best way to avoid this gas issue? GasX, tums, Enzymes? All of it? lol. She is so happy to be five? Thanks all! She is a little bummed her dad has to work until 8pm.
 

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