C.diff, ileus, blockages, j-pouch

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Peptamen is already broken down - so much so it is absorbed almost completely in the first couple of inches of the small bowel -- so it could get stuck what ever residue is there but so would everything else soft food wise
 
Hey just because your child read all of the Ibd memos where they listed the symptoms doesn't mean the rest of us even got those memos . :ack
I swear my DS left the manual at the hospital when he was born .
He typically leaves most docs scratching their heads .
 
Ya think I am referring to myself as a crack dealer. I was giving her the Peptamens before all this started up. But where does the swelling come from? Gas, a reaction? Something has to be in play as well? Ok My brain hurts I am not even making any sense anymore. I am so sick of trouble shooting my kids symptoms it is making me nuts. I am not giving her any nutritional shakes tomorrow.
 
She IS an overachiever and pleaser sort. I just read your other post..I think DS is jealous of all the attention you were getting today...or...making you earn your new club and rave reviews!
 
Hi Queen Gothel,
I was also confused tonight when I came on. I was like who is queen Gothel and why did she hijack this thread? Anyway glad that is cleared up. I so hope Rowan is doing better tonight.i was thinking of you guys all day and was hoping for good news when I logged in tonight. Hopefully tomorrow will give you some answers. I will be hoping and praying for you guys. Here is a link that describes what causes distention:
http://www.puristat.com/bloating/abdominal-bloating-or-distention.aspx
 
Gas again and poop! Another night of sleep yay for us. Very digested and dark green. Thanks to Welches grape juice and Popsicles! Hooray! Finally for a kid that is supposed to poop 5 times a day at minimum this is stressful and odd.
 
Hooray for poop! I hope you guys get some rest. Will be thinking of you and waiting to hear how it goes tomorrow.
 
Yep you confused me too.....i thought who is QueenGothel and why has she got Marys new avatar......:eek:

I hope yous rest well tonight...:ghug:
 
Yay for poop. Hope it all settles down soon. Glad you got some sleep! Still think we need a little smiley face with bags under the eyes and little snores coming out the mouth :D
 
Good luck today Mary!

<(^) ???? I must have a horrible imagination!! Where's the penguin???
 
Mark...it's a penguins head. Took me a minute also. I am going to have another cup of coffee before attempting to "digest" the rest of this thread. Penguins, queens, towers, and poop. Good grief!
 
Thank everyone it was an uneventful evening she slept thru. Now I am wondering if she I am crazy and subjecting my kid to another test due to something I might have caused. The doctor was asking me if her diet is so incredible different between her hospital stays and home and the only thing I can think of is the nutritional shakes. She was exercising her only control again with the shakes.claimed to not like them and insisted on Nutren Jrs at the hospital and we got home and I was giving her the Peptamin bc that is what we have. Gosh I hope this is not the case I wish I would have figured this part out two days ago. Then I would have something to be sure about. If I could have giving her a enema at home and stopped the shakes if that would make her feel all better. Ugh I just don't know though.
 
I have call into the nurse about if it is possible that these Peptamens with the Cipro is causing this crazy dilation due to trapped gas. I would hate to be wrong and now it is Friday. I also would hate to be right and subject her to more testing and radiation if it is just something as simple as feeding her clears for a day and non binding foods.

She is running this past the doctor and the dietician.
 
I would think if there was a reaction to the drinks there would be some nausea. But lets face it stranger things have happened. Don't blame yourself though. You have been doing an amazing job. Above and beyond, paying attention to every possible aspect. At least you have thought of it now, sucks it's Friday though. Can they hold off on pushing the contrast thru till around 2pm so you have time to try no shakes and see if there is no distention? She seems to be distended by then normally.
 
Agreed, but no they do not have another time slot and want to push through and do this test bc it is the weekend. This way I know I can bring her home. The distention is completely gone now for the first time. Regardless they are loading me up with Nutren Jrs to take home today. Ugh I hope this is the right thing. They said it is a rare side effect. Which makes me even more certain it is the Peptamins bc she always gets the rare side effects from medicine and it technically is a medical food. I also asked if there is a attending that is always there and they said no, the fellows are always here and we could possible assign her a fellow to follow her case but when they become an attending we will lose the dedication once there 7 years are up. Better than nothing though the fellow that always sees Rowan usually, knows how weird she is. Hoping to get some dedication from someone, somewhere.

Gotta go. :(. Don't want to do this at all!
 
[Q
Gotta go. :(. Don't want to do this at all![/QUOTE]

I know, but better to check it out. Even if it is just the drinks on the off chance it is not they have covered the bases. You don't want this coming back with a vengeance on Saturday night at 2 am when you can take care of it now. It will go so much easier too if she if feeling well and not in pain. Then hopefully you can just go home and enjoy your weekend.
 
Well the did do it twice the first time there defiantly was a hang up at the ileostomy site, they let out all the poo and gas and then did it again and it all flowed well. Waiting on my case of Nutren Jrs and to see the doctor. We will be home soon.
 
Well she is officially off the Nutrens and Peptamins until further notice. (Milk and cheese also) They told me her intestines are NOT NORMAL and are very swollen/dilated from the stomach to the anus in reviewing all of her X-rays and fluoroscopy. No narrowing or stricture. Just this odd air that won't leave. So I left with them just as confused as I, we have a follow up appointment on Monday to see how the weekend goes. Sent me home with glycerine suppositories if she gets distended badly during the day again. It could be a reaction to the Peptamins, rare but they don't even know. I cannot find anywhere that this is a side effect. The nice doctor requested a GI to look at her pictures all her X-rays have showed these massive dilation since the start on Dec 7. Thoughts? I am worried does this sound like a reaction from something.

I thought Crohns but they just took some biopsies and the inflammation was mild and pouchitis like. But they just did the pouch also. All of her numbers were spot on. That is a lot of intestines to be dilated. Full of air, like a balloon. I am so lost I don't even know what to goggle anymore. Anyone ever have this happen? This is why I need a GI. They might be breaking there own rule.
 
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Objective
To assess the prevalence of small intestinal bacterial overgrowth (SIBO) in children affected by irritable bowel syndrome (IBS).

Study design
Consecutive children affected by IBS according to Rome II criteria (n = 43) were enrolled at the Gemelli Hospital, Catholic University of Rome. The control population (n = 56) consisted of healthy subjects without IBS symptoms, similar to patients for age, sex, and social background. All subjects underwent lactulose/methane breath test (LBT) to assess small intestinal bacterial overgrowth.

Results
The prevalence of abnormal LBT result was significantly higher in patients with IBS (65%, 28/43) with respect to control subjects (7%, 4/56; OR 3.9, 95% CI 7.3-80.1, P < .00001). Patients with abnormal LBT showed a trend toward a worse visual analog scale score with respect to children with IBS without SIBO, but a significant statistical difference was observed only for bloating.

Conclusions
Results from this study suggest a significant epidemiologic association between SIBO and IBS in childhood. Placebo-controlled interventional studies with antibiotics used to treat bacterial overgrowth are warranted to clarify the real impact of the disease on IBS symptoms.
Click to expand...

From:
http://www.jpeds.com/article/S0022-3476(09)00247-9/abstract
 
The present article provides a general overview of the possible diagnostic procedures available for the management of small intestinal bacterial overgrowth in pediatric patients with intestinal failure. The focus is to address current diagnostic tools and understand their associated advantages and disadvantages based on a literature search. Culture of small intestinal aspirates, noninvasive breath tests and an emerging interest in quantitative bacterial DNA fingerprinting are discussed. Proper management is critical for preventing the recurrence of small intestinal bacterial overgrowth and its related complications. Antibiotic prophylaxis is one approach to the treatment of bacterial overgrowth in intestinal failure patients. Although treatment trials can be challenging in such a vulnerable population, more investigative clinical studies examining early diagnosis, more effective control of recurrence and the prevention of associated complications must be conducted.
Click to expand...

From
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3027334/
 
I read an interesting article about abdominal distention. It discussed adhesions from previous surgery that cause abdominal obstruction that lead to gas and air being trapped in the colon or small bowel. Could Rowan have scar tissue that is causing blockage? Also the article discussed infection and said often the patient will have fever or "guarding" of the stomach area because of tenderness. Rowan doesn't seem to have anything like that going on, at least not now. They also talked about toxic megacolon which can happen without a colon and in the small bowel.

What have they ruled out so far?
 
OK Mary, I decided to stop feeling sorry for myself and now feeding tube bound daughter.

A long the lines of Johnnysmom post
I know it might not be c diff but..........have you considered mega colon in the small intestines?

I'm sending you a link. I'm not posting it for certain reasons but still read it and think about it. I read where C diff in the small intes. will show negative on a stool sample. Maybe this could be causing havoc?????
 
QueenGothel said:
Well the did do it twice the first time there defiantly was a hang up at the ileostomy site, they let out all the poo and gas and then did it again and it all flowed well. Waiting on my case of Nutren Jrs and to see the doctor. We will be home soon.
Click to expand...

How did they let it out? Catheter? I don't know anything about stomas, just curious if there's any way to do that at home?
 
Dexky said:
How did they let it out? Catheter? I don't know anything about stomas, just curious if there's any way to do that at home?
Click to expand...

Dexky she doesn't have a stoma. She has a j-pouch when I was referring to the ileostomy site I was referring to where it was before she was reconnected the anastamosis. They let it out via double lumen catheter.
 
Farmwife said:
OK Mary, I decided to stop feeling sorry for myself and now feeding tube bound daughter.

A long the lines of Johnnysmom post
I know it might not be c diff but..........have you considered mega colon in the small intestines?

I'm sending you a link. I'm not posting it for certain reasons but still read it and think about it. I read where C diff in the small intes. will show negative on a stool sample. Maybe this could be causing havoc?????
Click to expand...

Yes, we discussed this today and she is not sick. This is the biggest weirdest part. No fever, not tired, bowel sounds are happening she is happy, playing, normal really. Could be... Thankful I have this arsenal to think about over the weekend before her next appointment. Thank You!
 
Johnnysmom said:
I read an interesting article about abdominal distention. It discussed adhesions from previous surgery that cause abdominal obstruction that lead to gas and air being trapped in the colon or small bowel. Could Rowan have scar tissue that is causing blockage? Also the article discussed infection and said often the patient will have fever or "guarding" of the stomach area because of tenderness. Rowan doesn't seem to have anything like that going on, at least not now. They also talked about toxic megacolon which can happen without a colon and in the small bowel.

What have they ruled out so far?
Click to expand...

They have ruled out c.diff, rotovirus, norovirus, h.pilori, e.coli, narrowing, strictures, food obstruction, ova and parasites, UTI, salmonella, shigella, vibro group, campylobacter, yersinia, aeromonas, plesiomonas, blood cultures/urine cultures/stool cultures all negative and tested 2 times. Idk thinking I need to get another infectious disease consult.

She is not distended now granted she had a large enema twice today. We shall see what tomorrow brings. No poop either. Time will tell.
 
Looks like I might be trying a fecal transplant just for the heck of it. Infectious disease recommended it for the c.diff and if SIBO or hidden c.diff it is worth a shot. A drastic measure I am defiantly thinking is worth a go.
 
I'm so sorry for all you're going through (Queen) Mary :(

I am always following along, just when I don't have any intelligent or useful advice, I just stay silent.
My thoughts are with you tho, and I am crossing everything in hopes that you find answers very soon!
:hug:
 
I do the same Crohn's Mom, I know I don't have any helpful advice but prayers and thoughts are always going up for princess Rowan. I hope you find answers and relief for her soon Queen Mommy!! I know that will bring you relief as well!
 
Now I am reading about FODMAPS by Mark Pimentel MD

It's gonna be a long night for me. Drinking coffee while researching then probably another White Russian... the New Years gift that keeps giving. Cheers!
 
Luckily she is on the right antibiotics. I think I might need a holistic approach with this. She needs a whole body cleanse with the right foods, without obstructing her. I am loosing faith in western medicine... again!
 
Breathe- stop reading go to bed- fodmap - DS did as well not for the same issue though.
My thoughts and prayers are with you and her both.
If your doc does not have answers Monday can you try to get a second opinion at Cincy without switching care there ???
They really helped us .
 
my little penguin said:
Breathe- stop reading go to bed- fodmap - DS did as well not for the same issue though.
My thoughts and prayers are with you and her both.
If your doc does not have answers Monday can you try to get a second opinion at Cincy without switching care there ???
They really helped us .
Click to expand...

Yes I will. For sure DH will go with me. We already are thinking about how we need more eyes... And lots of them. Too bad it isn't warm in Cincy. I wish it was Arizona. I hate all this snow. It was 10 degrees today but felt like 0. I hate Michigan winters. Seasons are overrated completely.

Finished my research I posted it now I just need finish reading it all another day.
 
Hey Mary...:ghug::ghug::ghug:

:ywow: Talk about being put through the wringer. :(

I hope you don't mind if I just think out loud here...have they ruled out a functional issue with the rectal anastomosis site?...Does, for whatever reason, the peristaltic action stop at the site and the rectum fail to take over?...causing constipation and distension.

Since this problem arose have they ever passed a flatus tube to see if that relieves the gas and faecal build up?

Thinking of you, :heart:
Dusty. xxx
 
QueenGothel said:
Dexky she doesn't have a stoma. She has a j-pouch when I was referring to the ileostomy site I was referring to where it was before she was reconnected the anastamosis. They let it out via double lumen catheter.
Click to expand...

As Dusty can so eloquently attest, I can be rather thick…

double lumen catheter inserted into what exactly??
 
I know your are thinking thinking thinking. I hope you slept some.

How's she feeling today?

J.
 
DustyKat said:
Since this problem arose have they ever passed a flatus tube to see if that relieves the gas and faecal build up?
Click to expand...

They discussed this in the appointment, he drew me a picture of why this happens and explained why the insertion of a tube would be needed narrowing and distal vs proximal diagnosis based on the bottle neck appearance. Then he said he would need to perform a rectal exam, he was shocked said the rectal anastamosis was open and not an issue. Also explained if this were the issue they should have noticed this during the scope. She is not distended at all today but granted it took her a while to become distended after being clear out for the other fluoroscopy contrast. (Sigh)
 
Hugs to you both!
Nothing else to offer but maybe a trip up here.
Ya know our Cherry festival is famous. Lots of fun. You have a farm to stay at.
Wait what am I saying....we're going to a hotel with a pool! That will be a lot more fun for the girls. YA!!! When ya coming????
 
AZMOM said:
I know your are thinking thinking thinking. I hope you slept some.

How's she feeling today?

J.
Click to expand...

She seems fine. The biggest non symptom she is having that is leaving them not as worried. No complaints. The only time she complains has been at night after trying to stimulate her bowel by giving her a large amount of warmed Welches grape juice and finally she poops and farts and gets the relief. FYI I don't not get this result during the day when trying the juice when she is extremely dilated.
 
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I am going to implement the low-FODMAP diet today and see if it helps with the gas and bloat and go from there. Luckily we do have somewhat of an arsenal since I have been an on again off again GF dieter. Hoping it helps all I can find on SIBO recommends this diet with the course of antibiotics to reverse the overgrowth the fastest. I figure it cannot hurt and luckily doesn't seem as hard as trying to implement SCD or something harder to a 5 year old that is starving.

Wish me luck going to make some GF pancakes. Thank god for Pamelas Pancake mix, I can make a lot of stuff with it.
 
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DustyKat said:
Talk about being put through the wringer.
Click to expand...

The fluoroscopy was 45 minutes long via enema contrast. The filled her took pictures flipped her rotated her took more pics added more trying to get it higher up. Then let it out, filled her back up again, flipped and rotated her more. She cried the whole time it took 3 of us to hold her down to get the images. Probably one of the worst things I have ever had to do. The whole time begging me mommy do not do this. When I got home and my husband asked how it went and I explained it he was shocked she was awake. I looked at him and said this is not the first contrast enema we have done. He wonders why I am freaking train wreck. Now I think the light went on that it always is me doing the dirty work. I had to give her all her at home enemas, I had to push the prolapse back in, I had to give her adult Canasa suppositories. Totally sucks that I am such a part of her pain all the time.
 
Farmwife, love the new pic. She is such a cutie.

We will be there as soon as Rowans belly distention disappears miraculously like a gift from heaven. Fingers crossed XX
 
Haha…Mary's Gone Crackers!!!

Did you photoshop that in there?? I could live on that list I think:) I hope it helps her!!!
 
QueenGothel said:
Thanks Dexky, (my iPad keeps wanting to change your name to sexy, lol)
Click to expand...

Looks like you were sold a dud then Mary. Take it back and ask for a replacement...one that works this time! :lol:

I so hear you Mary, as we no doubt all do, about being present for the tests and being the one to have to carry all the distasteful and painful tasks. It surely does suck. :( More often than not we are between a rock and hard place. Even if we wanted to not do these things I don't think the kids would a bar of it! I know mine wouldn't!
Have I told you lately what a fantastic job you are doing Mary? Well you are and no mistake! You're pure gold. :)

I wasn't so much thinking stricture as maybe a functional problem. As in the rectum has shut itself down for some reason?

Dusty. xxx
 
Yes, agreed. I don't think it will be very difficult to implement I have done pH diet, almost SCD didn't get far turned into GF quickly.

Thought I had the sauce but I don't. :( so using some with garlic. Bummer getting there though.
 
Yikes! I don't want to be responsible for that! :lol:

Seriously though Mary, I hope they can get this sorted ASAP. You have all had enough heartache to last a hundred lifetimes. :ghug:

Dusty. :heart:
 
Oh I am sure it will be ruled out in some way regardless, they are not done testing her. I use sarcasm as my defense mechanism to attempt to stay sane. I works sometimes then there are the few people that see through me like a window.

I wasn't pin pointing your suggestion would make for more testing just that there defiantly will be some testing going on. Unless a miracle happen which I am hoping for of course that this will just go away.
 
The sauce is also decent
On the link above

Ian's makes a gluten free French bread pizza and kids meal
As does a lot of kinnicknick foods
Good luck
 
Mary, good luck with FODMAP.

This diet come out of research by Sue Shepherd of Shepherd Works. This may help if you are reasearching the diet.
 
Wow, that test sounded horrible, so sorry you had to go through that and hold your poor little girl down. I know what you mean about going through all the hard stuff. My husband sympathises but it is always me that takes them to the tests, stays overnight in hospital, etc. Hope the new diet provides some relief!
 
No poop yet since about 5am. She has had GF pancakes/maple syrup, GF pizza, yogurt, grilled chicken, baked potato no skin, couple of pieces of dark chocolate. Nothing's a stirring really. Welches juice trick is next. I don't get why laying in her bed gets it moving though. Kinda reminds me of the old days when she had UC. :(
 
I know we used mineral oil for Johnny. Would that work without a colon? We refrigerated it and put it right in his juice. He called it his butter juice.
 
Just a reminder --- Gf is very very constipating-- since most are rice based.
Which is part of the reason we stopped the fodmap
That and it made no difference in DS symptoms after four weeks
 
It was a milk free dark chocolate, you know the super duper expensive stuff in the health food isle. Figured it was also an anti-oxidant and has a laxative effect also. I am giving her LF options bc it was on the low fodmap ok list. We don't do GF like others do GF we don't do all the rice. More potatoes, I got her sipping the juice. So if things don't start happening glycerin suppositions are next. Ugh!
 
It was a milk free dark chocolate, you know the super duper expensive stuff in the health food isle. Figured it was also an anti-oxidant and has a laxative effect also. I am giving her LF options bc it was on the low fodmap ok list. We don't do GF like others do GF we don't do all the rice. More potatoes, I got her sipping the juice. So if things don't start happening pediatric glycerin suppositories are next. Ugh!

Just trying to reduce gas, idk if she is really constipated or just not moving really. It is like a lazy gut. Idk I am just going with the flow. :ywow:
 
There is such a thing as delayed gastric emptying - gastroparesis
Among other things
Really think she meds a Gi who can help figure out the extra stuff that seems to be going on even if / its not Ibd related .
 
SERIOUSLY MLP I was just reading this article today. Funny I was looking at the Peptamin JR website, looking for anything that might stick out, and it said not for people with Gastroparesis. So I googled it.
 
Her symptoms and lack there of other symptoms is just so odd. If she doesn't poo tonight like she has been, then suppository in the morning. She is not huge but is distended and soft. I am kinda leary to give the suppository, at night. Don't want to give her a long lasting belly ache, even though it says it will produce a bowel movement within an hour. Thoughts to do it or not?
 
I am always suspect when they say "idiopathic". I would think surgery, antibiotics etc can disrupt her ability to empty properly. She doesn't seem sick, just unable to pass food and gas as it just gets trapped. (just thinking out loud) If neuropathy is a risk with Flagyl or Cipro I would think it is possible.
 
I would think that would be the ONE thing that Mott's would have picked up on if it were true.

I am sorry, this must be driving you mad.

Still hoping this disappears as quickly as it came and its just one of those strange flukes.
 
She just pooped. No pain involved. I have no patience at all. ok going to have a drink and relax. Never did drink one last night. Just googled all night and coffee.
 
Sleep .....
No more googling
Not recommended
She needs a well mommy who can think straight
Because you slept
 
Everything I watched on Jpouch failure had more to do with having diarrhea, not at all Rowan's symptoms. I did see a post on someone who had a "kink" for lack of a better word and it caused her not to be able to empty properly. She had symptoms more like Rowan's. I would think this would cause problems right away but the woman did not mention in her post when her problems started. There was also a complication of ischemia (less blood flow) and autoimmune associated complications.
I will say that every thing I saw said that guy at Cleveland clinic was the "guru". I don't know if they see kids there though.
 
I was actually just looking it up and Bo Shen does see pediatrics through Rainbow a babies and children's in Cleveland. This will be our next opinion if it requires one.
 
I hope you get some sleep. This is a good article to read tomorrow http://www.practicalgastro.com/pdf/October06/ShenArticle_ShenArticle.pdf if you haven't seen it already. I noted it talked about dyschezia, a word I have never seen before just now = constipation associated with a defective reflex for defecation. If you search the article for dyschezia, you will find 2 paragraphs for 2 different causes. Not sure if this is relevant for Rowan....
 
Hope you manage to get some sleep. Wish I had some advice to give, but not much help - sorry. Thinking of you! Can you try to get some me time? Even just an hour or two - go have a coffee out somewhere (or a glass of wine)
 
XMD, yes I have saw this article before but not recently. Thank you for posting it. It does still leave me questioning what exactly is happening. I would say in my best guess she is having mega pouch due to SIBO. Hopefully once under control it will all go back to normal and won't require biofeedback therapy. It also states diet low in milk, fiber, and carbs would help and this is her current diet, and it does seem to be helping. Hopefully thing start to resolve and I can get some good feedback from her doctor tomorrow.
 
Good luck
There is an eggie quiche like recipe DS really liked

Scramble eggs with water place in casserole dish- uncooked
Layer spinach and ham on the bottom
Add diced skinless tomatoes and hash browns
Sprinkle Sharp cheddar cheese on top

Baked 350-375F
Until done -about 30 minutes
- spinach is optional if she won't do green
 
Mary,
How is she doing today? I tried doing some research for you last night but did not find much and my little one didn't let me get much done. She kept coming out of bed. Anyway it looks like MLP,Xmdmom , and others have given you really great advice. I did find where some other jpouchers were complaining of similar symptoms but also did not have answers. I hope she is improving and the diet helps things move in the right direction. Thinking of you guys and sending hugs!
 
She seems ok. Playing, eating. Belly is still distended but not like it was previously. Tat being said I think the diet is helping. Still have a lot of questions and worries. Fearful of going back to the bag. Really don't want to do that.

But I am a pessimistic optimist. I can turn on a dime. I am still in survival mode so anxiety is high and my mind is full of horrible thoughts.
 

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