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12-07-2013, 09:25 AM   #1
Brian'sMom
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Need your opinions-We're having problems

As you all know Brian has been trending downward. I have mentioned things to the doctors at Mayo and Here in KC. But they don't really address his non eating and vomiting. I'm worried that something is wrong. Let me give you some background why I do.
1-He keeps getting sick with various things. Abscess, erethema nodosum, and now C Diff (DX Mon Dec 2)
2- He has been having a vomiting issue. Back in Sept he would vomit everytime he had hard painful cramps while pooping. Now in Nov, he vomits randomly. He feels "funny" in his stomach. There isn't much vomit since he isn't eating much
3-Since beginning 5 cans of Pediasure at night He never wants to eat anything. Not even something like candy or ice cream. It like pulling teeth to even get him to drink. He says he's not hungry and then if he does eat a cracker or two...he vomits. He thinks its because of the C Diff (the vomiting) But he's been on Flagyl for 4 days.
5-He gags often now while putting the NG tube in. He used to NEVER do this. And now he'll vomit a little upon gagging. Eventually he'll get the tube down. We used to have a TERRIBLE time getting stomach contents if he hadn't drank much from dinner on, he'd have to lay on his left side. He'd have to drink a glass of something.... now he'll vomit. Minutes later he'll swallow a few sips of water to get the tube down... and he can fill a whole syringe with water from his stomach. This has been happening for the past 2 weeks. Its not the same...so I feel like something is wrong.
6-Brian is so stressed that this vomiting is in his head...he needs to see the GI psyc... then Yesterday he woke in the morning to nausea. Vomited immediately. The bucket was full of what looked like curdled milk. Last night, again a day without eating anything ALL day...had the same vomit/put ng tube in/full syringe of water on stomach contents check: Woke at 4am to feeling nausea. He vomited up the tube. The bucket is full of thick Pediasure. He also had pooed in his pants. How could this be a psyc thing when he was sound asleep?

What could be going on?? He isn't in any kind of pain throughout the day. Does your stomach shrink after being on 5 cans of Pediasure since November 7? That doesn't sound right. If there was a stricture somewhere wouldn't he be in pain? At his scope on Oct 31 his terminal ileum was inflamed so much that they couldn't get the probe in. They said they tried several different ways..rolling him to this side or that. Could they have damaged it? What would be the symptoms of that?
Thanks Kathy
12-07-2013, 10:03 AM   #2
Mehita
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I'm not a doctor, but that sure sounds like stricturing to me. Has he had fecal cal or MRE of the small bowel done recently?

When DS had his 10" stricture, everything he ate and drank would come back up, particularly if it was a large quantity of something. The food simply had no place to go. His strictured area was only 3mm in diameter, so some sustenance was getting through, but not much. At his worst, he couldn't even keep water down.

His symptoms were feeling full after a few bites, nausea, constant vomiting and dry heaving, and cramping. He never really had pain, but lots of light cramping. When he did start complaining of pain is when we headed for the ER. The stricture was removed a week later.

The nocturnal poo is always a sure sign for DS that things are awry.

When were his last labs? How'd they look? Is he maxed out on Cimzia?
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12-07-2013, 10:23 AM   #3
my little penguin
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DS had lots of vomiting and random vomiting when he flares with nausea and lack of appetite. Since its ng have you tried a semi elemental or even elemental formula ?

Pediasure and kid boost was not broken down enough for DS.
Does zofran help?

When DS was bad nothing helped except the right meds to get the crohn's under control.
His Gi wasn't that concerned over the vomiting other than we knew he was flaring .

Never easy
What is the drug plan ?
How long till another option ?
Is his sed rate still up?
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12-07-2013, 10:25 AM   #4
crohnsinct
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That sounds awful and definitely not normal. I would be thinking blockage of sorts and demanding someone take a look and listen up. Good he isn't in pain but for sure having a bm in his sleep is something that would perk O's GI"s ears right up.

Good Luck!
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12-07-2013, 10:36 AM   #5
Clash
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C's inflammation located at his TI had caused issues when he was flaring. After every meal where he ate very little, a bite or two, he would vomit. It was never much but there would be an uneasiness in his stomach as well, he said it wasn't nausea but not severe pain either. Also during that time he could not drink boost, ensure, or any of the other OTC formulas without vomiting.

I would not think psychological if it is happening while he is sleeping too. I hope you find some answers and relief soon
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C age 19
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Dx May 2014: JSpA
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PAST MEDS: remicade, oral mtx, humira
12-07-2013, 11:09 AM   #6
Brian'sMom
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Thanks for the quick responses! Much appreciated. His labs were a week ago. Everything looked good except SED went from 52 to 41 and CRP went from 2.4 to 4.5 We had an MRE at Mayo on Oct 31. It had good results. I was thinking this morning...if his stomach has shrunk...then 5 cans at rate of 100 would be too much. It was ok a few weeks ago. Not now. Does a stomach shrink when doing EN at night? 5 cans? The Pediasure 1.5 hasn't been an issue of digestion before. BUt he vomits during the day without eating anything at all. The C Diff was thrown everything into a mess. He tested postitive for that Monday 12/2. His inflammation is Rectum and Terminal ileum. Also we've tried Zofran. But he feels nausea...and vomits within minutes. Last night he vomited up the zofran

Drug plan is Cimzia biweekly and .7ml of MTX weekly for a few more months to see if it starts to work. and 5 cans EN at night. Flagyl for 14 days total to get rid of C Diff

Vomiting is really messing things up!!
12-07-2013, 11:33 AM   #7
Farmwife
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Has it gotton worse SINCE the flagyl?

Grace's stomach has it's ups and downs. Sometimes she can get bullas feeds and other times can only have 45mls an hour. Very frustrating.
The GI nurse said to crush the Zofran and send it through with some liquid. That way it will dissolve faster. However check with your GI because Grace's tummy doesn't work normal.


HUGS
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12-07-2013, 12:10 PM   #8
crohnsinct
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Maybe the Flagyl is making him sick. When I had a cdiff scare I was violently ill on some antibiotics and they were going to give me Flagyl but with HUGE warnings that it would upset my stomach and make my diarrhea worse. Luckily it didn't turn out to be c diff and when I stopped the antibiotics all went away. Is he taking a probiotic?
12-07-2013, 12:15 PM   #9
Brian'sMom
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Probiotics bother him and always have. And he just finished Flagyl that ended Oct 31 for an abscess It didn't bother his stomach then. I'm baffled
12-07-2013, 01:18 PM   #10
Brian'sMom
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On call GI called. He said if it was C Diff problems: stools would increase along with blood and abdominal cramps.
If it were a terminal ileum problem, we'd see greenish in his vomit. And he'd have pain and more frequent vomiting.
He thinks its gastritis. He wants to increase zantac to twice a day. And possibly move to a prilosec. (I read that on mtx info that proton inhibitors can be problem...so if it comes to that we'll check with our GI first). He said gastritis can slow movement into the small bowel and lead to build up in the stomach...therefore loss of appetite. And gastritis can cause nausea and vomiting. I hope its this simple!!
12-07-2013, 01:23 PM   #11
Farmwife
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YES, that's Grace's issue. doubling up might help. When Grace is at her worse she's on a PPI and zantac.

HUGS
12-07-2013, 01:28 PM   #12
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Just saw your posts... so sorry that Brian still isn't well. I do hope it is as simple as the GI is suggesting!

FWIW, when Stephen did EEN, he ingested 2000 ml overnight, at 250 ml/hr - never caused any nausea. Once we started reintroducing foods, while it was a gradual process (but only over 3 weeks...), he didn't have any issues with feeling too full too quickly. When on supplemental, he did 1000 ml overnight - but, as he was eating a regular diet along with it, there would have been no reason why his stomach would shrink.

Can you try elevating the head of his bed a bit? Or have him use an extra pillow? Not sure if it'll help but, perhaps lying flat makes it more difficult for the formula to move along??
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
12-07-2013, 08:49 PM   #13
CarolinAlaska
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As you all know Brian has been trending downward. I have mentioned things to the doctors at Mayo and Here in KC. But they don't really address his non eating and vomiting. I'm worried that something is wrong. Let me give you some background why I do.
1-He keeps getting sick with various things. Abscess, erethema nodosum, and now C Diff (DX Mon Dec 2)
2- He has been having a vomiting issue. Back in Sept he would vomit everytime he had hard painful cramps while pooping. Now in Nov, he vomits randomly. He feels "funny" in his stomach. There isn't much vomit since he isn't eating much
3-Since beginning 5 cans of Pediasure at night He never wants to eat anything. Not even something like candy or ice cream. It like pulling teeth to even get him to drink. He says he's not hungry and then if he does eat a cracker or two...he vomits. He thinks its because of the C Diff (the vomiting) But he's been on Flagyl for 4 days.
5-He gags often now while putting the NG tube in. He used to NEVER do this. And now he'll vomit a little upon gagging. Eventually he'll get the tube down. We used to have a TERRIBLE time getting stomach contents if he hadn't drank much from dinner on, he'd have to lay on his left side. He'd have to drink a glass of something.... now he'll vomit. Minutes later he'll swallow a few sips of water to get the tube down... and he can fill a whole syringe with water from his stomach. This has been happening for the past 2 weeks. Its not the same...so I feel like something is wrong.
6-Brian is so stressed that this vomiting is in his head...he needs to see the GI psyc... then Yesterday he woke in the morning to nausea. Vomited immediately. The bucket was full of what looked like curdled milk. Last night, again a day without eating anything ALL day...had the same vomit/put ng tube in/full syringe of water on stomach contents check: Woke at 4am to feeling nausea. He vomited up the tube. The bucket is full of thick Pediasure. He also had pooed in his pants. How could this be a psyc thing when he was sound asleep?

What could be going on?? He isn't in any kind of pain throughout the day. Does your stomach shrink after being on 5 cans of Pediasure since November 7? That doesn't sound right. If there was a stricture somewhere wouldn't he be in pain? At his scope on Oct 31 his terminal ileum was inflamed so much that they couldn't get the probe in. They said they tried several different ways..rolling him to this side or that. Could they have damaged it? What would be the symptoms of that?
Thanks Kathy
Flagyl makes some people nauseous and vomit.
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12-07-2013, 09:03 PM   #14
kimmidwife
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I am also wondering if it is from the Flagyl. The only other thing I can think of is gastroparesis. I would keep pushing the doctor if you don't see any improvement over the next few days.
http://digestive.niddk.nih.gov/ddise...gastroparesis/
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
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Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
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12-07-2013, 11:21 PM   #15
DustyKat
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He may well have gastritis from the C Diff Kathy.

His symptoms of nausea, vomiting, lack of appetite and the gnawing feeling, if that is what the funny feeling is, would surely fit. For some people gastritis is characterised by pain on eating and no pain when not eating so this may explain why he doesn’t feel pain during the day if it is gastritis.

As you can imagine that when the lining of the stomach is inflamed and irritated that an NG being in there will add to the irritation, as will anything that is ingested. And when you aren’t eating you will still have irritants as bile and secretions continue to be produced.

Flagyl may be feeding into the nausea side of things and whilst this will treat the underlying cause, C Diff, it won’t stop the vicious cycle of the now inflamed stomach being constantly irritated by acid. That needs to neutralised with the Zantac and/or a PPI.

I am hoping right along with you Kathy that it is indeed this ‘simple’. Good luck!

Dusty.
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12-08-2013, 12:28 AM   #16
Brian'sMom
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Thanks all. Using some Zofran I had during a 'my stomach feels funny' moment. Seemed to calm it down. I agree that C Diff may be causing nausea too. We've just been dealing with vomiting since September when this flare was at its worst. He did prednisone then to calm things down. I just think we keep going from one thing to the next...each having a nausea aspect. I really hope this zantac helps fix his stomach. Because he's having tummy problems, he is having pill issues. This poor kid is a mess. Is it ok to stop and start Pentasa? GI said she's keeping that one going for colon cancer. That pill is so big and 4 of them. I think I may give them a break until we get his tummy better.
12-08-2013, 02:00 AM   #17
DustyKat
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Whilst there are generally no issues with stopping and starting Pentasa I would still discuss it with the GI to keep him in the loop since it is specific to IBD.

I know that the benefit of Mesalamine is questionable in Crohn’s but even so if you do stop it I would look to see if there were any worsening of symptoms that coincide with its cessation.

Sending loads of healing thoughts your way that your lad is soon feeling on top of things, especially with Christmas just around the corner!

Dusty. xxx
12-08-2013, 09:04 AM   #18
my little penguin
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Our GI had us stop asacol for stomach and lower Gi cramping stuff.
Turns out for DS it was doing absolutely nothing .
We scoped after two months off it no difference so you may want to ask.
DS was also in pentasa at first dx and it really did nothing .
12-08-2013, 10:10 AM   #19
Brian'sMom
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I am also wondering if it is from the Flagyl. The only other thing I can think of is gastroparesis. I would keep pushing the doctor if you don't see any improvement over the next few days.
http://digestive.niddk.nih.gov/ddise...gastroparesis/
This would've shown up on the recent MRE (MRI)don't you think? I need to read about it more. Because we had the NG tube, he was able to get the 3 bottles in and in the right time frame for the test. MRE showed pictures of contrast all throughout his whole colon


Thanks Again EVERYONE! Your advice and is PRICELESS AND SOOO HELPFUL!
12-08-2013, 11:24 AM   #20
Max's Mom
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Is Brian still up and happy and playing during the daytime?Last year ,when I finally took Max to the hospital,we ended up staying there a week.He was in bed pretty much in bed all day,just no energy to get up.C diff is what messed everything up to begin with.What really got him back to normal was the pic cline.It might sound scary and a big hassle but it is not.It really gave everything a chance to heal,combined with not eating.All the nutrients was in that bag and he gained a lot of weight thanks to that.
12-08-2013, 11:55 AM   #21
Brian'sMom
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Where do they put a PICC line? Where does it empty into to? All I know about them is My brother in law has one to receive chemo, its in his shoulder/chest area. He doesn't receive food thru it.
12-08-2013, 11:56 AM   #22
kimmidwife
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Brains mom,
Gastroparesis is not seen on MRE. They need to do a special test for it. However I am leaning more and more to thinking that these symptoms are coming from the Cdiff.
Here is an article from Mayo clinic talking about the symptoms which include nausea and lack of appetite. If he is not getting better you definitely need to let the doctor know.
http://www.mayoclinic.com/health/c-d...CTION=symptoms
12-08-2013, 03:21 PM   #23
DustyKat
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A PICC line is peripheral so is inserted in the arm.

A central line is inserted into the chest or neck.

These lines are used for either longer term IV needs or TPN.

Dusty.
12-08-2013, 04:01 PM   #24
my little penguin
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Picc Line equals possible infection.
TPN stresses the liver And kidneys .
Even greater for those on say a biologic.
Search on here someone suggested it to mehita for remicade infusions
See the papers there on risk
12-08-2013, 05:00 PM   #25
crohnsinct
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^^ Tru dat When O was inpatient she was put on TPN and it was the TPN that landed her in ICU. No infection. Just all the taxing on the body stuff. They got everything under control and kept the PICC line in with TPN but O's GI uses that as an absolute last resort with the kids.
12-08-2013, 09:02 PM   #26
Brian'sMom
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Would C Diff still be causing havok after 5 1/2 days on Flagyl? He still won't touch food. Last night refused the NG tube because the 2 nights before he vomited during night. He's still not himself. Wants to miss school again tomorrow. (That stresses me!!-All the missed school- all last week) and His poo is like green water today. The foul smell is gone and he did have blue gatorade last 2 days... And the cramps are less. Only threw up once today. So I think I see improvement. So slow. He usually bounces back once on meds. He's so blaahhh. He did get mtx last night and Cimzia today. I think he's just kinda throwing in the towel. He needs to get his superhero qualities back. I have been trying to not make a big deal about the vomit...like "Oh..its ok sweetie, you'll feel better soon" . I'm trying to not draw attention. He's one to get anxiety and I can tell he has a lot lately. I even told him, I'm not worried at all about your calorie intake. Just want you to get needed vitamins and mostly stay hydrated. Inside I'm: "What the H*** is going on??!"
12-08-2013, 09:05 PM   #27
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Brian's Mom- my daughter is just recovering from CDiff and the recovery was really rough. She never had issues with vomiting but it took about a week of Flagyl before she felt better and like 10 days before the diarrhea and stomach cramps stopped. She lost a lot of weight and literally had no appetite but now that she's done with antibiotics, she's starting to eat more. She missed a LOT of school and is just now beginning to catch up - not fun in high school!
It will get better soon. Thinking of you!
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diagnosed with Crohn's Disease at 16
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dx with JIA at 14
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12-08-2013, 09:18 PM   #28
AZMOM
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Brian's Mom - C Diff could be causing the havoc but honestly, it could also be the Flagyl. It is hard on the digestive system (oh the irony). I hope he feels better already!

Julie
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12-08-2013, 09:20 PM   #29
crohnsinct
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AW tell him to fight...we need our rock star back!
12-08-2013, 09:26 PM   #30
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I am just sick when I read your post....I was just thinking about private messaging you and asking you how things were going when I came upon your post. I am SO SORRY. I hope things turn around real soon.
Hugs from NW Kansas
Lori
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