Sick of being sick

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ClashPunk82

New member
I have a g-tube and get nighttime feedings. In the morning I usually have to cough since everthing in my lungs gets settled during the night and everytime I cough without fail I throw up. Does anyone else have this problem? I am wondering if it's just because my stomach is full of formula and the coughing makes it upset or if there is an underlying problem. I am also thinking maybe the formula gets too warm during the night and is making me sick to my stomachand was wondering how other people keep their formula cool during the night. Any help would be great! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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NoDayButToday

New member
I've had that problem and it is really unpleasant! Mine I think is just because I am full of formula, because it doesn't happen during other coughing fits.... I can't say I've found any really good solutions for it, except to use your stomach muscles to try your best not to throw up (resisting gag relfex basically).
As for keeping formula cool, the bags I get have a pouch sort of thing on the side to put an ice pack in. I'm not sure what bags you get, if yours don't have a ice pouch, I can give you the serial # for mine and maybe you can switch
 
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ClashPunk82

New member
Thanks! ya I do have the pouch but my mom told me the ice pack would freez the formula or something like that but I think from now on I am not gonna listen to her and use it to keep it cool. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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NoDayButToday

New member
Haha... I see where your mom is coming from, but I think the 70ish degree room surrounding the formula balances the ice out to a degree. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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shamrock

New member
I too have this problem and have had it for a long time (years). When I feel sick sometimes, I almost want to get sick, cas I always feel better afterwards. But then by mid morning I'm starving!! I try my best not to get sick, but you know that feeling when you try REALLY hard not to get sick but you know you're going to so you just give in in the end, thats annoying.
I try taking my feed earlier and much faster then I used to (so more is digested by the time i wake up) and I find that this has helped. I dont use those pouch things cas I know my problem is simply a full stomach thing.
Unfortunately, I dont do physio in the morning, anymore because it just brings on coughing which leads to getting sick...
 
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ClashPunk82

New member
Shamrock

I know what ya mean. I try so hard not to throw but in the end it just doesn't work. I tried making my feed go faster but found it was too much for me I was waking up in the middle of the night and my stomach was hurting so I went back to what I was doing before. I just hate throwing up and I wouldnt mind if it was once in awhile but now since I have the tube it's an everyday thing, fun fun, lol! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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shamrock

New member
Yeah I go thru long times when it happens everyday. Recenly I have a had long weeks where it hasnt happened cas im not coughing but i got a cold on fri, so I've been getting sick this week. It doesnt happen on weekends though-probably cas I sleep in! How fast do you take yours? I put mine around 230 ml per hour (I put my bolus feed at 400ml per hour)
 
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ClashPunk82

New member
Wow 230 that's pretty quick. Actually mine right now is 150 ml per hour I went up to 160 but it was too much so I went back to 150 but I am hoping I can get to 180 at some point. I just got the tube in Dec and they said it might take awhile to be at a really fast pace and I am pretty little too so my tummy isn't that big! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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shamrock

New member
I take a litre of stuff called nutrison. Its in a bag. I then take 500mls (a bottle) of the same stuff in the day. I think Im gona have my tube out tho. Im gona get the ng tube instead
 
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ClashPunk82

New member
Really? You wouldn't mind doing the ng tube? I really didn't want to do that just wasn't for me so I got the tube instead but I really neeed it since I went down to 88 pounds but now i am back to like 101 nd hopefully will get back to my old weight which was 115.
 
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NoDayButToday

New member
Shamrock-- this is just what I've heard-- NG tubes can exacerbate inflammation and cause congestion, which would not be good for a CFer. I was advised against them pretty much.
 
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anonymous

New member
Hi-

I don't mean to intrude on your discussion, but reading your posts has been very informative to me right now. Samantha has been waking up and vomiting her feeds for more than a week. Sometimes it seems like the entire feed. Other days its more like a quick spit up. We have been to the emergency room to check for blockage, she has been on daily Miralax. She was up to 400 mls. (about 2 cans) a night normally. Last night she couldn't even tolerate more than 5 ounces.

I am going to try to start the feed earlier so that it ends earlier - that way she won't wake up with such a full belly. I have a few questions:

I noticed some of you have had the g-tube for a long time. Did you have this vomiting problem when you were younger? What brand of enzymes do you use? Do you take them only at the beginning of the feed? Does anyone use Viokase? If they do how do you administer it? And finally: Do any of you think reflux attributes to the morning vomiting?

I know I'm asking a lot of questions, but since Samantha is not even two, she can't let me know how this is making her feel.
Thanks!

Maria (mother of three daughters, the youngest, Samantha w/cf)
 
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ClashPunk82

New member
Well for me I just got mine in Dec so it hasn't been too long. And when I first got it it upset my tummy quite a bit and was vomitting usually in the morning then it stopped for a bit and now I am back to throwing up every morning. Although the past week or so I have had a cold so that may be the reason also. And for the enzymes I take ultrase mt20 and what I do is take 2 when i start the feed and usually I have to get up to use the bathroom so I will take one more and then 2 more when the feed ends in the morning. My doctor told me it takes awhile to get used to and they put me on Prilosec 40 mg to help with the acid. And at night i sleep upright so the formula won't get into my lungs. I hope tat helps some! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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shamrock

New member
HI Maria,
I used to get sick in the mornings when I was younger, but this was usually a sign of infection (as I was coughig so much). So I wasnt getting sick all the time, only occaisionly. Also, my parents used to do the thumping on me so this would also contribute. Also, I found and still find that if I get up earlier for some reason, I feel sicker. (This is probably because the feed hasnt digested as much as it usually would) I dont find ever that I get sick in the middle of the night though.
I take creon 10,000. I'm supposed to take 8 of them each night, but I find that 6 is enough. I have been told to take two when I get into bed, leave a gap ( I would usually read or write my diary or listen to the radio) take 2, and when the feed ends at like 5am, take 2more. But I never take the last 2 at the end, I simply dont wake!! So I usually take 2 and 4. I've told my dietition that I do this and she said its fine, so long as I dont get cramps or 'runs'! <img src="i/expressions/face-icon-small-blush.gif" border="0">
Sometimes when I have a late night and am really tired, I just take the 6 all at once. Sometimes if I run out of creon like I only have 4 or 5 and dont want to go back downstaires to get more, I just take the ones I have. (I have also gone once or twice without any-luckily I didnt really suffer any side-effects!!<img src="i/expressions/face-icon-small-happy.gif" border="0">)
I dont use Viokase and I dont suffer from reflux at all.
Another thing-sometimes I feel like I vomit almost all my feed up, but I've been told this actually doesnt happen. Liquid can make it seem like theres much more there then there actually is.
Any way sorry for rambling! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
Niole and Shamrock-

Thanks for the informative replies. My concern is that Samantha only gets enzymes at the beginning of the feed. I'm starting to see that this isn't working very well for her. Shamrock, I noticed you said that sometimes you take all six enzymes at the beginning - Do you notice a difference, or have any problems the next day?

Samantha doesn't have any cough right now (knock on wood) so hopefully the vomiting isn't from an infection brewing. It has lessened in the last couple of days. We decreased her daytime enzymes by 1/2 pill each meal, and continue to give her Miralax daily. This has really improved her stools.

I agree with others who notice that when the enzyme level is too high, they get stopped up. This always happens to Samantha. They had recently increased her enzymes to 4 Creon 5's per meal, but then she stopped taking in as much. So she was getting more enzymes to digest less food. Her stools would just get harder and harder.

Thanks again!

Maria
 
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anonymous

New member
Maria- Hi. My son is 7 and has had his tube since he was 18mos. We use Viokase. We mix it in a small syringe with about 7ml of water and put it through his tube immediately, then start the feed. We repeat the process at the end when we unhook him. He takes 280 mls per night at a really slow rate-36/hr-trying to minimize any reflux. We are trying to slowly up his rate and the amount he gets. He has had a fundoplication so vomiting is not an option! I've read about people mixing the Viokase with the formula in the bag, but I guess we are concerned about it not being effective by the morning. This stuff can drive you crazy,eh?!
 
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anonymous

New member
Hi- Thanks SO much for the reply about the Viokase. We were told to just mix it right into the bag at the beginning of the feed. I think that's what started this whole vomiting mess. Samantha gets 375-400 mls. a night at a rate of 65. We were told to put 1/8 teaspoon into the entire bag. It seemed like to small an amount to me.

You are the second person who has told me that they mix the Viokase with a small amount of water or formula and tube it before the feed, then again in the middle and end (or just the end). I think if we had done it in this matter we wouldn't have had this stoppage problem.

We are now using her Creon enzymes again for the feeds. The Viokase was easier, but I'm afraid to try it again, even now that I know the right way. Does your son ever have problems with vomiting the feed or getting stopped up? What meds does he take for his reflux? Samantha takes Zantac 3X/day and Prilosec BID.

Thanks again!

Maria (mother of three, the youngest Samantha w/cf)
 
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