PEG Tube

I was on TPN 24/7 last year for 6 months before I had to put a stop to it as I suffered by 5th bout of septicemia (i.e., severe bacteremia) in as many months. I went back down to 70 pounds so my doctors just inserted a PEG tube a little over 2 weeks ago. I have been having problems with it since. Not only do I have trouble breathing by the end of the day (which has caused me to stop infusing for a day or two here and there), but my stomach contents (e.g., formula or other liquids), keep backing up in the PEG tube itself almost immediately after infusing/ingesting. I know when this happens for I can smell it before I even look at it. As such, I keep flushing the line about every hour. Is this normal?

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What type of motility problems do you have? (i.e gastroparesis... CIPO....constipation)
For gastroparesis, they usually skip the stomach and feed in the jejunum with j-tube or G-J tube. It sounds like your stomach isn't keeping up with your infusion. What rate are you at?

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After my family doctor gave me the choice between home hospice care or Mayo this past March, based on my family wishes I started with Mayo in AZ in April. They have discovered that my diagnoses from NV that put me on TPN was completely wrong. So far, they have found problems with the esophagus and lower intestines which they believe is causing my problem with the unexplained weight loss, constipation and severe lower abdominal spams. When all this started over a year ago, I weighed 128 pounds. As stated in my previous post, when they put in the PEG tube a couple of weeks ago I weighed 70 pounds. When I first started loosing weight without trying I thought it was cool. When I did not stop loosing the weight it became a nightmare. I look like a freak and am desperate for weight -- hence no photo of me with my posts. I have already been tested for gastroparesis and it came back normal. As to what is causing the problem, they are still trying to figure that out (as my team told me after the insertion of the tube, right now I am a " true medical mystery" -- words I did not want to hear). In any event, the PEG is in my upper left stomach just below the ribs. Mayo sent me home with orders for a Kangaroo Joey pump which I used in the hospital after the insertion of the tube. From the start, it has been a problem. While in the hospital, the skin around the tube and beneath was extremely swollen and painful (burning and stinging). Just lightly touching the skin was excruciating. I was told this was part of the normal healing process, which they already warned me would take longer than normal due to my malnutrition and low weight (that first saline flush a couple of hours after the PEG tube was inserted almost sent me flying right through the roof). This continued for the 3 days that I was hospitalized and when I left I could not even stand up straight. When I got home the hole around the tube finally broke free a few days later and all of this stuff came oozing out of it. It smelled just like the feeding formula. At first it was a mess (had to shower a few times a day to for days to keep up with it). Mayo happened to call me later that same day and they wanted me to immediately go to an emergency room here in Las Vegas where I live or fly right back to them the next morning. I have already made it perfectly clear to every doctor at Mayo that I will die in bed before I step foot into another Vegas hospital and flying back to Mayo was out of the question -- I could not even walk down my stairs, much less get into a car or airplane). It is now oozing very little and only stings and burns infrequently. When I started on the pump at home the day after I was released from the hospital I started at 20ml. The following day, as instructed, I increased it to 25ml. Within an hour after increasing the rate the intermittent burning, stinging pain became constant and I had a lot of trouble breathing. As such, I stopped the pump, flushed the line a few times in the following 2 hours and did not infuse again for 2 days (it took that long to get the pain to go away and get my breath back). During that time period I continued to flush the line with water every 4 hours. As the pump did not work, I decided on my own to try the bolus method. This has almost completely stopped the oozing and has greatly reduce the burning and stinging. I use a syringe and the gravity method (i.e., I pulled the stopper out of the back of the syringe, just fill it with formula, unclamp the tube and let gravity do its job). I am infusing 4 ounces of Osmolite 1.2 every 3 hours. I try and do this 5 times a day to get up to the 2 1/2 cans that Mayo wants me on but half the time, by the end of the day, I am having so much trouble breathing that I only get in 4 infusions (I can't breath sitting up straight or leaning back in the recliner. The only way I can breath is sitting and leaning forward. Even leaning forward my breathing problem gets to a point where I can not even take in enough air to talk. This will last anywhere from 8 to 12 hours with the boluses). Twice now it got so bad I had to stop infusing for a day in order to get my breathing back to normal. Further, my abdominal area gets bloated, hard and very uncomfortable.). Before infusing I flush with 1 oz of water and then 2 oz.'s after. Thereafter, to keep the tube clean from the fluid in my stomach (e.g., formula, pudding, yogurt, etc.), I flush with 1 oz. of water about 20 minutes after feeding and every hour after that until the next feeding. I am really concerned that this refluxing into the tube will cause the tube to clog and/or an infection. I do have a problem with GERD so I am thinking that when my stomach contests are refluxing up into the esophagus, it is also refluxing up the tube.

Finally, I am very disappointed with the low amount of calories they have put me on. They have allowed me to stay on a full liquid diet, which includes pudding and yogurt. I cannot eat, however, and infuse at the same time as I feel too full and this leads to the breathing problems. As such, starting yesterday my diet consists exclusively of the formula (which they tell me meets all my nutritional needs) and one large Hershey's Special Dark Chocolate bar which I let melt in my mouth before swallowing and nibble on throughout the day. At least I am getting another 576 calories from the candy bar to try and compensate for the 570 (2 cans) to 712 (2 and 1/2 cans) of calories that I get from the formula. I was pleased to see that the dark chocolate does not spike my blood sugar like the frozen yogurts from Golden Spoon do (which are my weekend weaknesses with my husband).

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Hi there, when I had a tube (I now have a low profile button) my stomach contents would always sit in the tube when I wasnt feeding, even if I clamped it. Its not a big issue, and the docs and specialist nurses werent concerned. It depends on where in your tummy the tube is sitting - mine is near the base of my stomach, hence stuff will always flow in to it. I wouldnt keep trying to flush it away, you will end up really bloated with water! - and it wont work. I would just flush it in prior to next feed. It never caused a clog.

I found it happened more when my tummy was very full (when under pressure, fluid will take the path of least resistance). Now I have a button with an anti reflux valve its not happening. - BUT, if I attach the barrel of a syringe to the extension set, stuff will flow out of my tummy at a rate of knots lol.

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My PEG tube is located at the top left of my stomach right under the rib cage. As for flushing, I have no choice. I can smell the problem before I see it. Once I flush, however, the smell goes away.

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Akachan, if you are having esophagus issues eating anything could be causing breathing issues. When a esophagus has issues, either with swallowing or reflux its becomes an issues with aspiration, which then causes aspirated pneumonia. Your breathing issues could be a result of your lungs getting either reflux or eating substances down into them. If that is a chance your best bet is to stop eating anything, lower your feed rate to 4 oz and do as you do feed every two or three hours. Adding a flush before and after of 2 oz each will keep you in the 8 oz cup range every couple of hours giving your digestive system ti e to work. So e formulas do cause acid reflux so check yours out on line and see if the blogs are complaining about that type of formula and reflux. If so change to a different type. Jevity formula has been one that people have complained about. Some backup into the tube is normal, if it moves back down the tube easily with a 2 oz water flus it shouldn't be much of a issues for blockage. Since your feeding often then the flushes every couple of hours should keep the backup fluid from getting thick enough to cause you any problems. Burning, stinging, and leakage is part of the stoma healing process. I was three weeks before I could fi ally take fluid without that, then had issues with Granulation leakage, pus, blister type and low infection. That needs antibiotics, cleaning and drying out the area to get it under control, so hope you don't have that in your future. Once you get 4 to 6 weeks into the tube and tube feeding you should be starting to feel more comfortable. I know this doesn't help much now, but the process is easier if done slowly when you first start out. Take your time, feed small and often, keep your stoma clean and dry and allow the healing process to begin.

Good lunch, take care and we will keep you in our thoughts and prayers.

Ron

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Ron:

Thank you for the information, it is a help. This is my first PEG tube and when Mayo inserted it a couple of weeks ago, they stated I would have training on how to care for and use it while in the hospital. For whatever reason that did not happen. When I asked my team of doctors about such training the day before I was released from their Phoenix hospital, I was told by my team that I would require home health care and they would do the teaching. Unfortunately, they did not try to set up the home health care until I was being discharged. It was not until the next day I discovered that my insurance only approved the home health care for supplies. As such, everything regarding the PEG tube (e.g., care, types of feeding, problem solving, etc.) I have to learn myself from the internet (trying to reach Mayo on the phone is useless).

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Akachan, there are a number of good tube feeding manuals out on the Internet, probably better than what you may have received from either your medical team or home health care. Both tend to be influenced by insurance representatives and formula manufactures. Don't get me wrong they both have their place and are both very needed to an extent for us Tubies, but that said their are numerous websites that have a number of tube feeders with experience that don't mind answer questions and as I have said their are a number of I telnet sites that you can access to get tube feeding care instructions, and how to perform the different types of tube feeding. The Oley Foundation has a section called tube talk that will provide you some good information. Their is also other sites, so e dedicated to just care and nutrition for Tubies, some where folks are blending g their own diet. I started a Facebook group for Adult Tube Feeders, and we now have a little over 100 members. Their is also the Blenderized diet group on Facebook that has some good information. Drink your own meals has some good I fo. I also use the Cleveland clinic website for tube issues and care instructions. If your going to be living with a tube the rest of your life like I and many others then its great to find a good group that you can discuss your issues, concerns and research from experienced folks. Many of these. Groups have areas where you can access tube care information or provide suggestions. If you get the chance must use a standard search engin and start typing your questions about tube feeding, you will be surprised to find all the I formation there is out on the net and like many of us you can then start educating your medical team on the care and feeding of folks with tubes.... My URL for the Adult Tube Feeding Group on Facebook is : https://www.facebook.com/groups/Adulttubefeeding/

Ron

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