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Need your opinions-We're having problems

Brian'sMom

Brian'sMom

Location
Midwest
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
 
Mehita

Mehita

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?
 
my little penguin

my little penguin

Moderator
Staff member
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?
 
C

crohnsinct

Well-known member
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!
 
Clash

Clash

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
 
Brian'sMom

Brian'sMom

Location
Midwest
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!!
 
Farmwife

Farmwife

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
 
C

crohnsinct

Well-known member
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?
 
Brian'sMom

Brian'sMom

Location
Midwest
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
 
Brian'sMom

Brian'sMom

Location
Midwest
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!!
 
Tesscorm

Tesscorm

Moderator
Staff member
Just saw your posts... so sorry that Brian still isn't well. :ymad: I do hope it is as simple as the GI is suggesting! :ghug:

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??
 
CarolinAlaska

CarolinAlaska

Holding It Together
Brian'sMom said:
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
Click to expand...
Flagyl makes some people nauseous and vomit.
 
DustyKat

DustyKat

Super Moderator
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. :ghug:
 
Brian'sMom

Brian'sMom

Location
Midwest
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.
 
DustyKat

DustyKat

Super Moderator
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! :ghug:

Dusty. xxx
 
my little penguin

my little penguin

Moderator
Staff member
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 .
 
Brian'sMom

Brian'sMom

Location
Midwest
kimmidwife said:
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/ddiseases/pubs/gastroparesis/
Click to expand...
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! :) :)
 
M

Max's Mom

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.
 
Brian'sMom

Brian'sMom

Location
Midwest
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.
 
DustyKat

DustyKat

Super Moderator
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. :)
 
my little penguin

my little penguin

Moderator
Staff member
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
 
C

crohnsinct

Well-known member
^^ 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.
 
Brian'sMom

Brian'sMom

Location
Midwest
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??!"
 
Maya142

Maya142

Moderator
Staff member
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!
 
AZMOM

AZMOM

Moderator
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
 
Lori1973

Lori1973

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
 
Brian'sMom

Brian'sMom

Location
Midwest
We can't even get the tube in tonight either. I'm so scared. When do we know if we need to go to the hospital? He is now vomiting bright yellow. (bile I'm sure). I'm just so worried.He had C Diff last winter. It was NOTHING like this. He is getting worse and worse. And so sad. it just pains me. He hasn't eaten since Thurs night-en feed. He barely drinks. We've been pushing that. Like I said before, not as much cramping...but water again. Was starting to thicken on Thursday... now water. But only like 3x a day..so that is good right? Not sure if we give him his 4th flagyl on such an empty stomach. It would be bad to skip it right?
 
Catherine

Catherine

Moderator
I would take him to hospital now because he is vomiting bile. Hopefully they will give fluids and will feel much better.
 
A

ashleybed712

My boyfriend has had similar symptoms, did the doctor say anything about taking magnesium pills? it helps reduce flare ups, vomiting, and helps with appetite. its a healthy vitamin regardless, so it wouldnt hurt to try! wishing the best<3
 
DustyKat

DustyKat

Super Moderator
Perhaps the time is right Kathy to go to the hospital and have him assessed Kathy, at least that way you know where you stand and aren’t at home trying to make these decisions yourself.

If he needs admitting at least he can get his hydration and Flagyl IV and allow his stomach/bowel to rest. May just be the kick start he needs to kick the C Diff and ?Gastritis in the butt.

Thinking of you both! :heart:

Dusty. xxx
 
Johnnysmom

Johnnysmom

:ghug:((((Hugs)))))

Agree on the ER. He can get rehydrated and start keeping his meds down so they can work on the Cdiff. Once they start vomiting a lot and get dehydrated it can be a vicious cycle.

I would want him checked for obstruction as well. The GI might give you good reasons why he doesn't think this is necessary but I would ask about it again.

I hope things get under control soon.:ghug:
 
C

crohnsinct

Well-known member
I vote hospital or if you haven't gone at this point demanding the GI fit him in this morning.. He is getting dehydrated and dehydration will complicate everything.
 
Tesscorm

Tesscorm

Moderator
Staff member
Agree with all above... even if they say he is okay, it will give you peace of mind that he is 'okay' and you'll know to keep on with what you're doing! :ghug:
 
Brian'sMom

Brian'sMom

Location
Midwest
Talked with GI clinic this morning. Upon details of wed-sunday...they want to admit him. They are even wondering if he's not tolerating the Flagyl. And dehydration a concern
 
Farmwife

Farmwife

Good I'm glad.
I know when Grace had c diff everyone one said how surprise they were that she wasn't in the hospital. Her body also didn't handle Flagyl well. HUGS
 
Tesscorm

Tesscorm

Moderator
Staff member
Glad they're admitting him... they'll be able to treat him as necessary and he'll be feeling better soon! Thinking of you... :ghug: :ghug:
 
M

Max's Mom

Unfortunately there are lots of risks when dealing with Crohn's.Max had inflammation throughout his whole system,so surgery was not an option. The Piccline went from his upper arm into the chest area.He was hooked up to a bag of TPN 16 hrs a day for 10 weeks.He was carrying the bag around in a backpack.While at school he was not hooked up.A nurse came to our house once a week to do bloodwork and change the dressing.Yes,we new that there's a chance for infection,but I would not hesitate to use it again if need be.It brought him back to life. The green watery poop totally sounds like the c-diff is still active.
 
DustyKat

DustyKat

Super Moderator
I hope this admission soon has Brian feeling on top of things again, bless him. :heart:

:hang: Mum! :ghug:

Dusty. xxx
 
C

crohnsinct

Well-known member
Max's mom - for sure TPN and PICC lines have their place. My daughter certainly needed hers also. But just not something entered into lightly I guess.
 
mish2575

mish2575

Brian'sMom said:
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
Click to expand...
dont have time to read it all before leaving work but wanted to chime in that his gag reflex and esophacal muscles are probably weakening and he vomits much easier now, with less resistance.
 
Brian'sMom

Brian'sMom

Location
Midwest
We are on iv fluids and iv flagyl. Total bowel rest. Not even ice chips. They did start tpn thfu iv and lipids. I got on my phone cause i remembered some warnings on this thread about tpn. Should i be worried. They said it was nutrition he needs from not eating for a week
 
DustyKat

DustyKat

Super Moderator
TPN has its place in IBD Kathy. Presenting with poor physical condition when resting the bowel is needed is one of those places.

I hope Brian responds well to the treatment. Good luck!

Dusty. xxx
 
E

ellie

Location
Sydney Australia
Agree with Dusty - when there's not enough tolerance of oral intake to maintain hydration, let alone electrolytes, and then nutrients to allow healing, TPN can be the circuit breaker that gets him back on track!
Have been following your thread for a couple of days - sending warm healing thoughts to you and your son :)


HD
 
C

crohnsinct

Well-known member
I wouldn't worry about the TPN. You are inpatient and the docs and nurses will be monitoring and watching things closely so you are in good hands. Like MLP said, just not something to volunteer for. I hope he starts perking up soon. Rock on Brian!
 
Last edited:
kimmidwife

kimmidwife

Kathy,
Don't worry about the TPN. It is only when you use it long term that it can cause issues. It is good that they are finally treating him. How is he doing today?
 
Brian'sMom

Brian'sMom

Location
Midwest
He's still on tpn and lipids. Yesterday they had him put down an ng tube and started EN too. 20 ml an hour continuous. Havent seen GI this morning yet. They also added steroid foam enema type thing
 
Brian'sMom

Brian'sMom

Location
Midwest
Thanks for thinking of us. He's doing better. He is perking up. The tpn and lipids were done at 4. He's now on IV fluid and EN. The combo equals 65. Every 6 hours they move the EN rate up by 10 and decrease the fluid by 10. As the EN has been increasing is when he really perked up. Only 1 stool yesterday and today. No cramps today, so thats good. Sad thing is last 10 days food disgusted him, niw that c diff seems gone and cramps gone he can't stop thinking of food! He'll just blurt out "bacon"! I told him, "just remember how food made your bowels feel. You need bowel rest." He wants remission badly so he doesnt complain. The foam steroid enemas are so easy. He said he feels nothing. Very different from the Rowasa. We probably go home friday...but maybe tomorrow. I'm not pushing anything. I want him better before we go home. Flagyl by IV is a relief
 
kimmidwife

kimmidwife

SOOOO glad he is doing better! Def a good sign that he is getting hungry! I agree with you not to rush him out until he is really ready. Better an extra day inside now then having a setback!
 
Hope345

Hope345

Hi, just saw your post, how is he doing?
Hope they are giving him all that he needs.

We are headed to a new GI next month with the anti- M.A.P. treatment. It does involve antibiotics, but it might be something to consider. I am going to start a thread about our daughters journey because this may be the treatment of the future. It is still a theory but with 80% success, it has our vote:
let us know how your son is doing.
 
Brian'sMom

Brian'sMom

Location
Midwest
We're home!! Came home late thursday. We're total EN. There is a bit of relief for him that every night he doesn't hear, "C'mon, lets put your tube in...we need to get the food started if we want to get the 5 cans in". Now its a slow rate of 66 24 hours a day. I had a genius moment and asked for our last 6 days of Flagyl to be compounded into a liquid. So now I'm keeping with the 6 hr schedule on that. I woke up last night and without waking him just put the flagyl in his tube. He slept in this morning...and I was able to just put in the flagyl again. No stress of .... He needs his meds ... it tastes awful ... eat something with it, etc. Also when we were doing tablet form to fit it in during waking hours we had to do 1 in the morning, 2 in the afternoon, and 1 at night. That schedule was hard on his stomach since he had the C Diff.
It seems like he's doing better. Its way to soon to tell. But a least he's not vomiting while on the toilet and it appears he's not hurting. The GI psych said to stop asking him if he's cramping, having pain, or to number or rate the pain. He promised me he'd tell me if there was something I needed to know. Its been soooo hard not to ask him. I've slipped already today. She said when someone asks you, 'Are you in pain?' A person will scan themselves to see. She said when you go looking for pain you usually find it.
The hospital is a world of its own. Being home its brought about feelings of embarrassment for Brian about the tube on his face...etc. Our school district offers a tutor to come to our house (part of the 504 thing) so we are going to utilize that. The GI doc doesn't want him back in the school germs when he's fragile and healing right now. Something like strep throat or flu...geez that'd be horrible. Then we'd have to hold Cimzia or MTX. So he won't have to worry about kids seeing him with a feeding tube just yet. They didn't tell me how long this total EN would be and I didn't ask. For now I just want him to get better. I want healing to start.
THANK YOU EVERYONE for thinking of us and sending hugs and prayers. I felt every one of them!! :)
 
Tesscorm

Tesscorm

Moderator
Staff member
So glad he's starting to feel better!! I really hope this does the trick for him!

And, great idea with the tutor and then with Christmas break... it'll be a few weeks before he has to worry about going to school with the tube, will give him a bit of time to get accustomed to it (and will also give his closer friends a chance to get past the 'newness' of it before school starts again) - hopefully, it'll be no big deal by then. :ghug:

Praying it's a smooth path from here! :ghug:
 
Brian'sMom

Brian'sMom

Location
Midwest
Our Christmas break starts Dec 20th. I meet with the school on Monday to get answers about the tutor. (She was sick Friday...:eek2:)

Do any of you have a lot of knowledge of C Diff? The doctors said for Brian to avoid his aunt that has UC for a few months. She had her colon removed last Feb and has had c diff since...but has been on flagyl a lot of the time. She found out in June that she still had it but had previously tested negative for it. So she was relieved at the times that the GI found it. She was put on Vancomycin. We didn't have any exposure to her during that time. But right before we went to Mayo (Oct 28th) we happened to see her briefly. But my husbands mom said she was still on vancomycin so she was fine to be around DS. The doctors at Children's Mercy we saw this past week disagreed. They said we should avoid contact with her. Especially since she has resistant C Diff. They said Brian responded very well to the Flagyl.
So my question....now that Brian has had c diff (and had it Aug of 2012) will he get it all the time now? And is someone that gets it...are they always carrying it? I asked the doctors but everyone seemed sketchy on that-no real clear answer but kinda acted like it could "hide" in Brian's gut. Just wondering other opinions. (I haven't talked to our GI here or the one at Mayo yet. We saw the GI that was on rounds the week we were in hospital)
 
M

Max's Mom

Max had c-diff 5 times.Now he's been good for over a year.He gets a Florastor every other day.We thought we would never get rid of it but one day it was just gone.I heard that everybody has c-diff in their intestines,but are not being bothered by it.I have also heard that it can hide in spores inside the intestines so if all of it doesn't get killed off by the antibiotics it will multiply and start a problem again.The doctors we have seen gives different answers and they do not seem to have answers to everything. At one point when he was on Vanc and it didn't seem to help,I asked what's next and they didn't have a next.At least not for kids.Very frustrating.If possible,I would avoid anybody with c-diff.C-diff is something you want to get rid of ASAP.I bet c-diff is to blame for some of Brian's issues right now.Just my opinion.
 
Johnnysmom

Johnnysmom

It was explained to us that antibiotics kill bad and good bacteria. The bad grows back faster than the good and when the balance is off, C diff grows and gets out of control. Our GI has Johnny go on Florastor twice a day for 2 weeks whenever he is on an antibiotic. This just keeps the balance of good and bad so that the bad doesn't take over. To my knowledge Johnny hasn't been exposed to Cdiff, but the GI always wants him on a probiotic anyways so it must be something that is fairly common??

Once you have Cdiff I know you are more apt to get it again, so maybe once it is there it can hide but as long as that balance is there it isn't a problem? That is just the way I understand it, I am not sure the GI's even know for sure the exact mechanism.
 
Jmrogers4

Jmrogers4

What we were told it that it is so highly contagious and that IBD kids are highly susceptible. Jack's had it over the summer and I think we are still dealing with the fall out from it.
 
kimmidwife

kimmidwife

C diff can be active, meaning it can be making you sick right now or it can be colonized meaning it is laying dormant in your system. This dormant state does not seem to happen to everyone. It seems like many people clear it totally but in some it lays dormant. it is very contagious and can stay on sheets and toilets and things. Make sure you clean everything extra well. The following is a great article about c diff and preventing its spread:
http://www.azdhs.gov/phs/oids/hai/documents/HAIcommittee/cdiff-living-with-pamphlet-general.pdf
 
Brian'sMom

Brian'sMom

Location
Midwest
Great article Kim! You always find good stuff :) I'm going to print this and give it to my son's aunt also. I think she might keep reinfecting herself and possibly have given it to our son. She doesn't like to do research so this is perfect.

When we got home I cleaned the whole house. And bleach is the only thing that kills C diff
 
kimmidwife

kimmidwife

No problem! You are right about bleach being the only thing to kill it. It is hard every time we go to a hospital I obsess over all these germs and make everyone take their clothes right off and out them in the wash.
 
DustyKat

DustyKat

Super Moderator
It is so fab to read that Brian is home and doing so well! :mademyday:

I hope you can get the tutor sorted and Brian gets a good break away from school and the opportunity to rest up, bless him :heart: you must both be exhausted. :ghug:

Good luck with Aunt too! :eek2:

Dusty. xxx
 
CarolinAlaska

CarolinAlaska

Holding It Together
I'm glad to hear Brian is home and doing well. I hope that the tutor works out. J gets very embarrassed when she has NG tube and won't leave the house except to go where people aren't, or to our small church.
 
Twiggy930

Twiggy930

Location
Canada
So glad to hear that things are taking a turn for the better and that you guys are home.

Brian'sMom said:
The GI psych said to stop asking him if he's cramping, having pain, or to number or rate the pain. He promised me he'd tell me if there was something I needed to know. Its been soooo hard not to ask him. I've slipped already today. She said when someone asks you, 'Are you in pain?' A person will scan themselves to see. She said when you go looking for pain you usually find it.
Click to expand...
I have wondered about this with my own son. We have issues with chronic pain and I think sometimes my son anticipates the pain and then gets the pain. It is so hard to know if the anticipation of the pain is bringing it on or not. Kind of like a which came first, the chicken or the egg, thing. It is sooooooo hard not to ask them about it.
 
Brian'sMom

Brian'sMom

Location
Midwest
Yesterday Brian was sitting on toilet. Then yelled out, "HEY". I came running. He was smiling ear to ear. He said, "I didn't even know that was in there!! I didn't feel anything". He had a lot of (somewhat) formed pieces. He was so excited. Later in the day he went again and was excited but said he had felt "A little cramps" but it wasn't much he said. So I think we're healing in there. I HOPE!!
 
Brian'sMom

Brian'sMom

Location
Midwest
My college freshman is coming home next weekend. He let me know last night that his roommate has Mono!! His roommate is in the first day of extreme fatigue and found out the girl he was dating had had mono. I'm hoping my college son's body resists this germ and he doesn't bring it home over Christmas break! I read that it is harder to catch than the cold but Just in case, anyone else deal with this virus while on biologics?
 
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my little penguin

my little penguin

Moderator
Staff member
i would let your GI know and see what they say about exposure.

I know the ER was very concerned the one time they thought DS had mono (EBV) while on remicade
 
Brian'sMom

Brian'sMom

Location
Midwest
We've been on EN a week. Today stools seem less in volume...but more of them. Was just 2 times a day...now 'fluffy pieces' but has been in there more. 5 times today. Is this normal for day 7 of total EN? Is things going back south or since they are getting a little formed is it normal to have more trips in today to get it all out? Wednesday is our last day on Flagyl for the C Diff. I'm just getting my worry on tonight...ugh...anxiety...
 
kimmidwife

kimmidwife

I would definitely call the GI and see what he says. I also would keep them apart as much as possible. No sharing bathroom, towels etc. of course extra hand washing goes without saying. Keeping my fingers crossed for you guys!
 
Naturelover

Naturelover

Brian's mom, So sorry to hear all DS is going through. Are you aware that the Zofran comes in tablets that you put under your tongue and they melt under your tongue? Might want to see if either your PCP or GI doc will give you some to keep on hand at all times.

Any inflammation in the GI system can keep the rest of the GI system from functioning correctly. The inflammation can cause the muscles to not contract in a coordinated manner etc. and can lead to other symptoms throughout the GI system.

Your DS has been going through a lot. It will take time for his body to recover and get his energy back even after he starts to feel better. Best not to push going to school with all the flu and viruses going around right now. Can you ask the teachers to only have him do assignments that are important and leave out the "busy work" assignments?

With all the issues my DS, DD and myself have had to deal with, we found homeschooling worked for us. I couldn't begin to imagine the added stress of having to adhere to assigments and schedules from school. My heart goes out to your family.

Blessings & prayers,
Naturelover:ghug:
 
C

crohnsinct

Well-known member
Oh no! Did the room mate leave? I hope so...or sleeping in the infirmary anyway.

O was on a weekend mission trip with youth group and about a quarter of them came down with mono. It was ridiculous...just dropped like dominos. You can imagine the long car ride up and back, close sleeping quarters, run down from all the work they were doing and lack of sleep. O emerged unscathed.

Then there was the time my niece came for a holiday with 103 fever. My sil didn't tell us she was running fever and under the weather. Breathing all over O (she is young and loves O. By the night she was like a dish rag and we were taking her to ER. Flu. Once again O escaped it.

Immune suppression doesn't always mean they will catch everything but I would take extra precautions with keeping them separate, handwashing, no sharing cups etc until you know college is out of the woods.
 
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