Treatment Options for Gastroparesis & Traveling with a Feeding Tube

Treatment Options for Gastroparesis

"Thomas L. Abell, MD

Dr. Abell will share his 35 years of experience with gastroparesis patients, and the perspective gained from 100 patient focus groups. He will discuss the published work on the NIH Gastroparesis consortium, as well as current thoughts on the pathophysiology of gastroparesis and the gastroparesis like syndrome. He will conclude his presentation with a review of therapeutic options for these disorders."

Treatment Options for Gastroparesis: Image and Information Credit: http://oley.org/?page=webinars


For the complete recorded webinar: https://www.youtube.com/watch?v=mcTb-Qzvaak&feature=youtu.be




Traveling with a Feeding Tube

According to the Feeding Tube Awareness Foundation, which can be found here: http://www.feedingtubeawareness.org/navigating-life/on-the-go/traveling/,

"Traveling these days is always a challenge, especially if you will be taking a plane or even a train. But it can be done, with a little preplanning. Here are 5 simple steps to making your trip work.

Talk to your doctor. At least a month prior to travel, talk to your doctor about your travel plans. Ask your doctor to write a letter that explains your child’s medical condition. Make sure it includes a complete list of medical equipment or supplies your child will have while traveling. Print it out, as only paper documentation will get you through security. See this sample letter from the Oley Foundation.

Create an emergency plan. You need to have a plan in place in case something happens. Research where the closest children’s hospital is to your destination. Ask your doctor for a recommendation for a hospital or doctor in case something happens. Also, make sure to plan for any possible emergencies, such as a tube that falls out, a broken pump, or a lost shipment of formula. Consider bringing your child’s medical records, or at least a summary of them, such as a copy of the AAP/ACEP Emergency Information Form for Children With Special Health Care Needs.

Talk to your homecare company. You will need to bring along medical supplies and formula, which can get quite heavy. Ask your homecare company if formula and supplies can be shipped to your destination, or if they have a local branch that can deliver supplies. Make sure you know who to contact if there is a problem with your pump or charger during the trip. In some cases, the homecare company may even provide an extra backup pump for travel.

Determine what you need to pack. More on this below.

Contact the airline, train, or transportation authority at least 72 hours in advance.



What to Pack

This is a general list of things you might need or want to pack for a trip with a child who has a feeding tube. For more detailed information, see the blog Traveling with a Tubie: What to Pack.

Feeding pump and backpack
Feeding sets (bags)
Feeding pump charger
Feeding syringes or gravity bags
Extension sets and adaptors
Syringes for flushing
Venting supplies, such as syringes, Farrell bags, or venting tubes
Water for flushing while traveling — consider bringing 60ml sterile water containers for air travel or travel abroad
Formula, breastmilk, or blenderized meals — with ice packs if necessary
All medications
Small syringes, pill crushers, or medicine cups for medications
A tube replacement kit, including at least one extra tube, lubricant, a syringe for the balloon port if applicable, and tape
Tape, gauze, and dressings as needed


Remember your Charger!


The number one forgotten item when traveling is the feeding pump charger or power cord. Always double check to make sure you have packed yours.

Parent tip: consider bringing a small cooler or insulated lunch bag to transport formula and medications with an ice pack. You can also purchase small refrigerators that plug into your car.



Airline and Train Regulations

It is critical to contact the airline, TSA, or Amtrak in advance if you will traveling with medical supplies. There are many regulations about what can be carried on, what can be checked, and what must be shipped.

For air travel, a good place to start is the TSA Cares hotline at 1-855-787-2227 or TSA-ContactCenter@dhs.gov. The following TSA-related links will help you find general information for traveling with medical supplies.



TSA Tips for Traveling with Medication

Screening for Passengers Requiring Special Assistance
Travelers with Disabilities and Medical Conditions
Screening for Passengers Requiring Special Assistance
3-1-1 Liquids Rule
Traveling with Formula, Breast Milk, and Juice
Disability Notification Card
Traveling with Children
Screening for Passengers Who Require Medically Necessary Liquids
Screening for Passengers with Medical Devices
For train travel, see Amtrak’s Screening Process.



Traveling with Medical Liquids

From time to time, headlines in the news highlight stories of people who run into trouble while traveling with medical supplies and liquids. These stories can be scary for anyone who is considering flying with these items, but don’t let your fear of the TSA screening process stop you from traveling. While there are no guarantees that everything will go perfectly, ample preparation ahead of time will greatly reduce your risk of difficulty with the screening process. Here are a few things to keep in mind when preparing to travel.

1. You can and SHOULD call the TSA Cares hotline before your trip. The purpose of TSA Cares is “to assist travelers with disabilities and medical conditions.” According to the TSA’s website, it is recommended that passengers call the hotline 72 hours prior to traveling. Representatives at TSA Cares are able to give advice specific to each individual’s particular needs that will aid in the security screening process, and give the traveler a better idea of what to expect when they arrive at the security checkpoint. Moreover, the TSA Cares program can provide a TSA agent to escort the traveler through the airport and assist in the screening process. The hotline’s toll-free number is 1-855-787-2227 and the email address is TSA-ContactCenter@dhs.gov. The hotline’s hours of operation are Monday-Friday from 8am-11pm EST and weekends and holidays from 9am-8pm EST.

2. Use the TSA’s Disability Notification Card. This card can be printed from this link and handed to a TSA agent upon arriving at the security checkpoint to make screeners aware that you will need some type of additional consideration during the screening process. The card will not get you out of any part of the screening process, but it will discreetly alert them to your needs and hopefully help the process to go more smoothly.

3. You CAN carry more medical liquids through security than would be allowed through the 3-1-1 rule. Medical liquids such as formula, breast milk, baby food, and liquid medications are allowed through security checkpoints. The TSA website warns, however, that travelers carrying medical liquids MUST declare medical liquids at the beginning of the screening process due to the additional screening measures required. If you or your child require a specialized ready-to-feed formula that cannot be purchased at a retail store in the event that checked baggage were to get lost, it is a good idea to carry enough formula on board for 2 days. That would hopefully allow enough time once you’ve reached your destination to make emergency arrangements with your supply company or find someone local to the area you are visiting that could spare enough extra to hold you over until your baggage arrives. Any necessary medications should ALWAYS be brought in carry-on luggage.

4. For longer trips, ship supplies and formula to your destination ahead of time if possible. This will prevent you from having to pack all of your needed supplies in your checked luggage.

5. Check with your airline about waived baggage fees for medical supplies. Most airlines that charge fees for checked baggage will allow one bag of medical supplies to be checked without paying the usual baggage fee. You may still want to pack one or two days’ worth of supplies in a separate checked bag as well, just in case the medical supply bag arrives late.

6. Pack your liquids last. If they are the last thing you put in your carry-on bag, they will be easily accessible when it’s time to go through security. Put everything in zippered plastic bags so that when you get to the security checkpoint, it will be easy to pull them out without having to dig through your whole carry-on bag.

7. Print all of the TSA policies that pertain to what you’re carrying with you. While the TSA works to ensure proper training for all its agents, there is always a chance that you will encounter an agent who does not have experience with or a thorough understanding of the policies pertaining to medical liquids and supplies. Print any policies from their website that may apply to your situation and keep them in a zippered plastic bag inside the same bag with your medical liquids where they are easily accessible. If anything comes into question, you can quickly identify the policy that pertains to that item. It is also not a bad idea to have a letter from a physician listing the medical liquids, supplies and equipment that you will be traveling with that may affect the security screening process.

8. Don’t send your liquids through the x-ray machine in a closed carry-on bag. If you have your cans or bottles of liquid formula and medications in zippered plastic bags, it’s easy to pull them out and put them in one of the plastic tubs provided at security. (The plastic bag will also keep them from getting dirty since people put their shoes in those tubs, too.) If you have a soft cooler with medical liquids and ice packs in it, unzip and open it before putting it through the x-ray machine and set it into one of the provided plastic tubs. Before any of your medical liquids go through the x-ray machine, make sure that the TSA agents who are doing the x-ray screening see what you have and hear you say that you are sending medical liquids through the machine so they know what’s coming before it pops up on their viewing screen. Most other medical supplies, such as syringes, pump bags, extension tubes, and medical tape can go through the x-ray machine.

9. It’s okay to ask your TSA screener to put on a clean pair of gloves before handling your medical supplies. Ask nicely, and insist if you need to. Explain that because of the individual’s medical conditions, you are doing everything you can to avoid contact with germs and cross-contamination. It may be a good idea to remind them to put on fresh gloves after coming into contact with your medications as well.

10. When you travel with medical liquids, you WILL be asked to open them, or they may be opened for you. The TSA’s website states, “Liquids, gels, and aerosols are screened by X-ray and medically necessary items in excess of 3.4 ounces will receive additional screening. A passenger could be asked to open the liquid or gel for additional screening. TSA will not touch the liquid or gel during this process. If the passenger does not want a liquid, gel, or aerosol X-rayed or opened for additional screening, he or she should inform the officer before screening begins. Additional screening of the passenger and his or her property may be required, which may include a patdown.” If you are carrying ready-to-feed liquid formula in cans or tetra paks, know ahead of time that you will most likely have to open them and bring something to pour the formula into, such as a spare feeding pump bag or empty baby bottles with tight-fitting lids. Even an empty plastic water bottle will do. To avoid concerns over opened formula spoiling, travel with a small soft cooler and ice packs. Opened formula is good for 24 hours when it is kept refrigerated. Medications will need to be opened and tested as well. Even though the TSA doesn’t require it, it’s a very good idea to put bottles of liquid medications in zippered plastic bags in case of spills. It’s also a good idea to make sure the lids are on tight after they’ve been tested and before you put them back in your carry-on.

11. Frozen items do not count as liquids as long as they are frozen solid. The TSA website states that “Frozen items are permitted as long as they are solid and in a ‘frozen state’ when presented for screening.” This includes ice packs used to keep formula and medications cold. However, if they are at all thawed or slushy, they will be subject to the rules and regulations for liquids. For individuals who use a blenderized diet or breast milk for tube feeds, this would also mean that pre-blended formula or breast milk that has been frozen solid would be permitted without being subject to the additional screening for liquids as long as it is not partially thawed.

12. Allow extra time in case you run into delays at security. Of course this is advised for all travelers, but going through the security screening process with larger-than-usual quantities of medical liquids and individuals with special needs means can take extra time. Find out the recommended arrival time for the airport you will be departing from and add an extra half hour or hour to it, just in case. You may end up sitting at the gate for a longer time than you’d like, but that is much better than missing your flight. If you have allowed ample time before your flight, you will not have the added stress during the security screening process of wondering if you’ll miss your flight or not.

13. Be polite. Patience and a positive attitude can go a long way in helping the screening process go smoothly."

Traveling with IV Nutrition or Tube Feeding
Barbara Klinger (experienced traveler with IV nutrition)
Rick Davis (experienced traveler with tube feeding)
Susan Buckland, TSA (Oley Foundation)

Image and Information Credit: http://oley.org/?page=webinars


For the complete recorded Webinar: https://www.youtube.com/watch?v=3UrnyhaA-8Y&feature=youtu.be

My friend wrote an article entitled, "Tips on Surviving A Car Trip With Gastroparesis."

Image Source taken from Imgur

Gastroparesis: Know the Risk Factors for This Mysterious Stomach Condition

This is an article that spoke to me as well that I found online. I wanted to save it in my blog so that I could refer back to it when I need to. I also like having things in the same place, research wise, because it makes finding things easier. Plus, it contains great information that might help others who may not have seen this article. I want to have information in the same place so that people can find it and read it but I am including the source, if you want to go back and read the original article. This article was taken from: http://health.clevelandclinic.org/2015/09/gastroparesis-know-the-risk-factors-for-this-mysterious-stomach-condition/.


And it reads,

"Gastroparesis: Know the Risk Factors for This Mysterious Stomach Condition
Early diagnosis makes treatment easier
September 8, 2015 / By Digestive Health Team
Digestive stomach system - real view female anatomy concept


As diabetes cases skyrocket, another condition called gastroparesis is rapidly becoming a more common diagnosis. It reduces the ability of the stomach to empty its contents but does not involve a blockage. Nausea, vomiting, loss of appetite, bloating and chronic abdominal pain are the hallmark symptoms, according to gastroenterologist Michael Cline, DO.

If you have diabetes, gastroparesis can cause it to be poorly controlled. Severe gastroparesis makes it difficult to manage your blood sugar.

Primary care physicians — and even gastroenterologists — frequently overlook and under-diagnose the condition, he says. Sometimes it is initially misdiagnosed as an ulcer, heartburn or an allergic reaction.

In non-diabetic patients, the condition may relate to acid reflux.

'In current data, up to 40 percent of people with acid reflux have some sort of delay in gastric emptying,' he says. 'So that’s a fairly large number, when you look at the millions of Americans who have acid reflux,' Dr. Cline says.

Stomach motility either abnormal or absent

Gastroparesis, which means partial paralysis of the stomach, is a serious disease that prevents your stomach from digesting food and emptying properly. Damaged nerves and muscles don’t function with their normal strength and coordination. That slows the movement of contents through your digestive system.

Doctors don’t yet know how to reverse the damage, but there is a range of treatment options. And, early diagnosis helps, Dr. Cline says.





A look at what causes gastroparesis

The primary cause of gastroparesis is damage to or dysfunction of peripheral nerves and muscles.

In diabetic patients, Dr. Cline says, it appears as more of a neuropathy-based disease associated with damaged nerves. In patients who don’t have diabetes, it seems more muscular-based: The nerve endings are all right, but the muscles are not responding, he says.



In addition to diabetes, other sources of gastroparesis include:

Lingering post-viral effects — You get a virus, but the nausea and vomiting from the virus don’t go away after the virus is gone.'Some of those cases will resolve, and we just have to wait and watch,' Dr. Cline says. 'But a lot of times it doesn’t resolve, so we have to continue to treat the patients.'

Connective tissue diseases — Gastroparesis may plague patients who have diseases such as multiple sclerosis or muscular dystrophy.

Side effects from medication — Probably the most difficult group to treat, narcotic pain medicines and other drugs slow a patient’s intestinal motility, Dr. Cline says.'That can be very hard to treat, because the medications often override what we prescribe to treat the gastroparesis,' he says.

Post-surgical effects — Some patients develop gastroparesis after the vagus nerve is damaged or trapped during a gastrointestinal surgical procedure.





A difficult disease to treat


Treatment sometimes begins with adjustments to diet and medication. If those approaches don’t work, surgical treatments are the next steps:

Feeding tube — Because gastroparesis impairs proper nutrition, surgeons can insert a feeding tube through the patient’s nose that bypasses the stomach. Or a surgeon may place what is known as a J tube directly into the patient’s small bowel for feeding.If these don’t work, total patient nutrition (TPN) is the next step. The patient is fed through an IV.

Gastric pacemaker — A surgeon also may use a minimally invasive laparoscopic procedure to implant a gastric pacemaker to treat this chronic digestive condition.The small device employs gentle electrical impulses to stimulate the stomach’s muscles to perform their usual functions. These impulses help move the stomach’s contents through the digestive tract and bring the patient relief from symptoms.'We’re moving towards not really curing gastroparesis — because we really don’t know how to reverse the neuropathies yet — but fixing it as best we can,' says Dr. Cline. 'So patients and their families need to push for the diagnostic tests that we can do, because the earlier it’s diagnosed, the easier it is to treat.'

The gastric pacemaker after surgery. Photo used with permission from the patient, not in article.





Treating psychological concerns


A neuropsychiatric specialist is sometimes called in to address mental health concerns that can accompany this chronic disease.

'If you wake up sick every day and vomiting all the time, this disease can quickly move from a purely physical one to a psychiatric one, so we treat the possible components of depression, anxiety, pain and so on, too,' Dr. Cline says."

An NJ Tube Story by Alley Samms

So, I have decided to showcase a couple of guest bloggers so that they can write about things that I don't really have experience with. An NJ tube is one of them. Over the next few weeks, I will be incorporating guest bloggers to write about things like TPN, gastric sleeves, and GP and pregnancy. Thank you in advance for reading my blog and thanks to everyone who is helping me out in this endeavor. It means a lot to me.

This article was written by my good friend, Alley Samms. She has several Youtube links that also discuss her NJ tube and she has a store in which she sells gastroparesis jewelry. I met her on one of the many support groups I'm in for GP and she is an amazing woman! She's a very strong person and I'm glad to have her as a friend.

The LINK to her store is: http://hopesalley.bigcartel.com

Her most recent Youtube video about NJ tubes: https://www.youtube.com/watch?v=B9D-0eto-Uk&list=UU9dhy8cIzb97vgMOdeJf_8A

Her first Youtube video after her tube was placed: https://www.youtube.com/watch?v=2tMVbnGQ4Jc&list=UU9dhy8cIzb97vgMOdeJf_8A

Now, her story:


An NJ Tube Story by Alley Samms

My name is Alley Samms. I am 27 years old and have Gastroparesis, and severe GERD, which lead me to get a NJ feeding tube because of malnutrition. I was “wasting away” in my GI’s own words and most likely would not have survived a few more months without some sort of feeding intervention. I have now had a NJ tube for the last consecutive 16 months with no breaks and feeding 24/7.

A NJ tube or Nasojejunal Tube is a long tube that is inserted in your nose, follows down thru your stomach and ends in your jejunum so you can feed into your small intestines while by-passing your stomach. Not to be confused with the NG or Nasogastic tube that stops and feeds into your stomach. As we all know feeling into your stomach would be pointless with GP patients.

When I got my first NJ (Nasojejunal tube) I was approx. 83 lbs., and severely malnourished. Gastroparesis caused me too much pain and nausea after eating or drinking even water. I could not sustain my health or weight by myself.

My GI had suggested I go straight to a J tube for months and I even met with a surgeon who described the tube and how he would make a 9-inch vertical open incision on my belly for placement. I freaked out and told my GI I wanted to trial the NJ tube to see how I do first before I go through such an invasive surgery placement, and boy, I am glad I did.

The day of my first NJ placement I was terrified and was NPO (nothing by mouth) for a day already. I arrived at the hospital and sat in the freezing waiting room for about an hour until they finally called me back. I sat in the holding area in the IR department on a hospital bed; they didn’t even have me change into a gown. The first time getting an NJ tube is always the worst, I tell you it gets a lot easier to handle after your first.


What happens when they placed my first NJ Tube:

First I Always bring my own big bottle of water and my own bendy straw, this is very important, also I take 8mg of ODT Zofran about an hour before my replacements/placements just to ease my nervousness about gagging.

I sat up in the bed, the nurse tech then told me what’s going to happen (Ha like that will ever help coming from a nurse) and I was about to have a panic attack.

They cover the end up the tube which is weighted with lidocaine jelly and insert the end of the tube in my nostril, once they start pushing it in my nose I started swallowing the tube. Now on my first placement like normal for most I gagged so much they had to take that tube out and start over because I could not stop gagging.

Lets try this again… Second try, the tech-nurse starts pushing it past my throat, I sip on the water and he gets it all the way into my stomach with me only gagging once.

He gave me a big high-five and told me to hold my tube in place until I could get into the Fluoroscopy machine room to have it advanced.

I sat there for about 30 minutes holding my tube and joking with the EMT’s that came in and out bringing in people from other hospitals. Finally I got into the Fluoroscopy room. Basically, this is where the Dr. will advance your tube into your jejunum. You lay on a hard table with the “Fluoroscopy” machine, which is taking a constant x-ray to check the placement of the tube. I lie there as the doctor pushes and pulls the tube in and out, laying from side to side until the end of the NJ tube gets far enough past the duodenum. Once the tube is in place, they taped it to my nose (Yuck) and I was on my way home.

The first day, like I said is always the worst. I gagged the entire way home, any time I talked and I ended up throwing up a few times without displacing my new tube thankfully. Rest assured this sensation of gagging or chocking will go away in a day or over night.

The placement of an NJ Tube.



Now fast forward to the not so great experiences with my NJ Tube I have had later down the road.

My first bad incident was partially my own fault. I used to leave the “slack” of my tubing hang out of my backpack by my leg and up to my face. Bad idea.

My first tube was ripped out violently by my poor puppies paw. I ended up in the ER that day with my sinus cut open and needing a replacement. Always tuck your tubing slack into your backpack if you have kids or animals around. You can even get caught on a door handle, and you do not want that.

That brought on issue two that can happen with NJ tubes, or any tubes for that matter: Kinking, coiling and displacement.

I got a new NJ tube placed after my dog yanked my first one out of my face. The Dr. who placed my new tube had issues advancing it past my ligament of treitz (for me this is a certain place after the duodenum where my tube will safely stay in my intestines because I have sections of reverse motility). By the time I got home that night and tried to hook up to my feed I noticed I could not flush my tube. Back to the ER I went; yes it was coiled backwards in my duodenum and almost tied into a knot.

This leads to another great tip for NJ tubes. When my tube kinked, they did not replace it with a new tube, but just un-coiled it by pulling it slightly in and out and pushing it back in further. Do Not Do This! Get a New tube if yours kinks!

Tubes, especially small NJ tubes (mine is a 8Fr) have kink memory and once they get kinked, it will kink again soon if not immediately. So, low and behold 3 days later, yup, my tube was kinked and flipped backwards in my jejunum.

I don’t quite remember how many tube replacements I have had now, if I had to guess its only about 9 or 10 but that’s over a course of a year and three months.

To make your life easier you will learn what works for your body and making living with and replacing tubes a lot easier on you. I have had my share of horrible experiences of tube replacements. My last replacement the Dr. was so pompous and thought he was the best, that he did not listen to me and ended up fracturing my nose and getting the tube stuck in the top tier of my sinus cavity. Extremely painful. I have had it ALL done. I have never been asleep or sedated thru any of my NJ tube placements so I get to enjoy every little moment. However, I prefer not to be sedated because once it is placed there is nothing to really recover from so I can go on about my day as normal.

I have had my share of really bad doctors who act like they know what they are doing but don’t when it comes to NJ tube Replacements. I first will tell you my easiest way to get a replacement, then tell you some of the horrors I have been through.

First, lay down and have a nurse pull your tube out for you in one smooth motion. Breathe thru your mouth the entire time, I even found humming works too. It takes less than 15 seconds to pull out and its disgusting but not as bad as you would imagine. But do not make the mistake of cheating and drinking something like pedia-sure before you get your tube pulled or else it will be in your nose all day long. It will taste and smell sort of gross like bile but ask to blow your nose and you will be fine.

Then, if you trust your Dr. they can do the rest but I Don’t so I ask the nurses to do my placements. Basically as I stated before, sit up, sip water thru a straw then go lay on the Fluoroscopy machine and get it advanced. And breathe thru it all, long breaths out while they push the tube in and out helps. And if it hurts very badly, something is wrong and they need to stop right away.

Then tape your tube to your Cheek, not your nose. Taping it to your nose will make you gag more. The closer you tape your tube to your nostril on your cheek the less it will move and bother your throat.

Tape I recommend: Hypafix, Durapore, Tegaderm, Tendrgerips and I also get Band-Aids in cute designs and cut the sticky ends off and place them on for some pizazz. If you apply something called “ No sting Barrier Spray” your tape will stick much longer.



Now some things you should know about what Doctors Should NOT do during NJ tube replacements:

When switching the tube in nostrils: If there is sharp severe pain STOP the placement. Your nose is deviated and no matter what even if they get it placed you will be in horrible pain the entire time you have the tube. Like myself, I have to keep my tube on the Right side the entire time. I learned that after screaming bloody murder.

When a doctor tries to tell you he is going to replace the tube by using a guide wire or another tube as a guide for the new tube, tell them no, or run far away. I speak from too much experience on this and it NEVER works and is miserable to go through.

What I mean about guide wire- The Dr. will want to put a guide wire inside your existing tube, keep the guide wire in you while pulling out your tube. He will then slowly pull your tube out inch by inch (takes about 20 minutes or more) Then he will want to keep that guide wire in and put the new tube over it. This is agonizing and very slow. This does not work, you will gag your brains out, vomit and not be able to breathe while you are chocking on your own vomit. Don’t let them do this.

What I mean about a tube guide: Similar to the guide wire but worse. The Dr. will keep in your existing tube. Then he will place another tube in the same nostril in the hopes it will follow the line of the tube you already have. That’s right, two tubes in one nostril down the back of your throat. This also does NOT work and results in the same, crying gagging, vomiting chocking and begging for someone to stop. (I actually had to punch this Dr. and then throw up on him while I was begging in pain with tears in my eyes for him to stop this, which resulted in an investigation on that Dr.)

Do not let my horror stories scare you away from NJ tubes and their placements. I just have bad luck and have to go to the worst hospital in my town because they are the only ones who will place them here. Not all Dr.s will do this to you, but now you have things to look out for and know the outcomes to better judge your own situation.



A few tips about NJ tubes:

Clogs: With and NJ tube being so much smaller than all other tubes, it will clog. Depending on what feed you are on, it may clog a lot. Get some SMALL syringes. Under 20mls. I personally use 15ml-5ml-and the occasional 3ml for everyday use and clogs. I do not know why but the 60ml syringe will take 10+ hours or never unclog your tube. If you use a very small syringe it will come out in less than 20 minutes.

Upkeep: I have obviously have had an NJ tube much longer than the normal person would normally have one. I get checked by an ENT (Ear Nose Throat specialist) in-between all replacements now to O.K. my sinus for a new tube.
I have not had a sinus infection yet at all.

My secret: Neti Pot, use when needed, can be used daily but I use it only when I feel gunk building up. Use the Neti pot frequently if you start to get postnasal drip or else the tube in the back of your throat will start getting coated with hardened mucus and will start irritating your throat. The Neti Pot will prevent this buildup.

For days your nose hurts, because that will happen sometimes especially if you have severe allergies like I do. Use Affrin Spray, but do not use this more than 4-5 times a month or it can cause more permanent congestion. So only when very needed.


Why I have Chosen to keep my NJ tube instead of getting a GJ or J tube placed instead:

When I had my first NJ tube placed I was severely malnourished and 83 lbs. I did start to improve fast after starting NJ feeds. My GI and I agreed after a few months I was responding so well and gaining weight that I may only have to have the tube for a few more months. Well, by the time we discussed the G/J – J tube again I had gained about 15lbs. My Body is one that takes forever to gain but a minute to loose. I can easily loose 5 lbs. in a day with still eating. For example years ago before the tube I had my wisdom teeth removed, I was still eating daily just soft foods and I lost 16 lbs.

In a week, my body recovers horribly. So, with that in mind the surgical placement of the G/J – J tube alone would cause me to loose all the weight It has taken me over a year to gain (about 20 lbs. to be accurate) and I would start all over again and I just do not want to do that. I am the lucky one who has little issues living with an NJ tube day to day, no real pain, I forget its there most the time. Because of the NJ tube I am now able to eat orally without pain in my stomach (still have pain in my intestines) so my health has overall improved because of tube feeds and my NJ.

My GI’s and I’s goal is for me to reach 110 lbs. and then pull my tube and see how I do, if I start loosing weight I will re insert the NJ tube and basically play it by ear.

Image Source: Taken from Imgur

Motility Specialist Appt Tomorrow

Well, I had a bit of a mix up today. One pain management doctor referred me to another. Now, I don't know who to call for refills. Finally, after phone calls to both offices, and after my new doctor telling me that he doesn't call in pain medicine, I finally got both of my prescriptions refilled.

Also, my insurance doesn't cover Lyrica, which is for nerve damage/pain. They will cover Neurontin, so my doctor called that in instead. I start it tonight and I hope that it helps. Maybe it will calm down my stomach enough to keep me from vomiting, pending that it stays down.

I see the Motility specialist in the morning. I'm a bit nervous and I'm not sure what to expect. I know that I need to ask her about the implant the pain management doctor recommends and how that would work with a pacemaker in my stomach if they decide to go that route. Maybe they'll do a gastric bypass ... I'm not sure. The GP is so severe that any relief would be possible.

The drug cocktail I'm on now, that I can keep down anyway, is making me incredibly sleepy. I've slept for the past two days. I'm not entirely sure if that's from shear exhaustion or the drugs.

I need to think up a list of questions for the motility specialist. I think she's going to give me a diet to follow - but I've already cut out all of the gluten. I've been almost on a liquid diet. But everything I eat, like clockwork two hours later comes right back up. Soup, drinks, etc, it doesn't matter. It ALL comes back up.

To be sure that it wasn't food spoiling in my stomach, I went two days without eating (well, I forgot to eat to be honest), so there was NOTHING in my stomach. I ate half of a can of tomato soup followed by some V8 kiwi strawberry juice. I did this around 11:30pm and two hours later, it all came back up.

I'm just tired of not being able to eat. I want to be normal again. I'd like to go and see the new Batman movie, but I can't. The smell of popcorn alone would make me ill. I want to hike and drive without throwing up. I just feel lost and hopeless sometimes. I hope this doctor can help me. I would be game for almost anything to be able to be normal. I want to finish school - I only have a year left to become a Geologist. I'm scared that I won't be able to take classes this fall unless it's an online class. Also, if I have the surgery, I don't want to start out the semester like that. I would like one semester where I can attend classes without ANY absences and coherent so that I can actually learn what I need to know. I'm just so scared.

I'm just so uncertain of what the future holds and that scares me. I really want to graduate. I've worked so hard to graduate. It's so hard to explain to my professors how sick I am. You can tell people you're sick, but they won't understand until they see it for themselves. I had friends come over to hang out with me and they didn't realize how bad it was until I went to the bathroom about 6 to 8 times while they were at my house.

I wonder if anyone else with GP has this issue. I just don't want a feeding tube. I'm scared of that option. I don't think it will come to that, but I have been losing a lot of weight. I've dropped a pants size and a bra size. This isn't the way I wanted to lose the weight. I gained a lot of weight after the knee problems. But, I didn't want to starve myself. I want to eat my favorite foods again. I know all of this sounds completely selfish because I know there are people who have this worse than me.

My mother told me today that my grandfather had something similar. He would vomit after eating too. I'm not sure if he had gastroparesis or not, and I can't ask him now, which makes me sad because I miss him so much. I am not even sure if it's hereditary.

I guess I'll have more to report tomorrow after I talk to the specialist. Please wish me luck!

Medications, Diet, and Treatment

I have been on several medications for gastroparesis, but none of them really help. I cannot sleep because I stay up vomiting all night. I vomit at least 8 times a day, so keeping medication down is a real challenge.

So, the medications that I'm on right now are as follows:

Zofran 8mg - three times daily under the tongue. Zofran is used to treat nausea and vomiting caused by chemotherapy. It is also used to prevent or treat nausea and vomiting after surgery.

My problem with this medication is that even though it dissolves under the tongue, it's very hit or miss. It doesn't always work to control the nausea. It also has a VERY strong mint taste and when you're nauseated, that doesn't really help.

Phenergan 25mg - four times daily. Phenergan is an antihistamine. It is used to treat allergic reactions and to treat or prevent nausea and vomiting from illness or motion sickness. It is also used to make you sleep before surgery, and to help treat pain or nausea after surgery.

My problem with this medication is that it's hard to keep down. However, it works the best out of all of the antinausea medications. If you get it through an IV, make sure your nurse pushes it slowly. If not, it will burn like hell and blow your vein. Trust me on that one.

Bentyl 20 mg - once per day. Bentyl is used to treat bowel problems including irritable bowel syndrome.

Again, it's hard to keep down tablets. This was given to me to control the spasms in my stomach. It does help, but not enough.

Dexilant 60mg - once per day. Dexilant prevents the production of acid in the stomach. It is used to treat gastroesophageal reflux disease (GERD) and inflammation of the esophagus.

The problem with this medication is that it interacts and effects the absorption of the Levsin. So, I haven't been taking it. Also, it's hard to keep down, even though it's a small capsule.

Levsin 0.125 - four times daily under the tongue. Levsin is used to treat stomach and bladder problems. This medicine is also used for rhinitis, to reduce some problems caused by Parkinson's disease, and for the treatment of poisoning with drugs that are usually used to treat myasthenia gravis.

I have been on this medication for only a few days, so I can't really offer an opinion.

As for diet, I follow this plan:

I cannot have fruits or vegetables, high fat, high fiber, or gluten. That limits my diet greatly. When I eat, it burns in my stomach. Imagine having heartburn inside of your stomach ... and then multiply that by 20. My stomach is pretty much conditioning me NOT to eat. If I do manage to keep food down, it's usually bland. I try to drink Ensure so that I can have vitamins, but that doesn't really stay down either.

The Mayo Clinic says:

Eat smaller meals more frequently.
Eat low-fiber forms of high-fiber foods, such as well-cooked fruits and vegetables rather than raw fruits and vegetables.
Choose mostly low-fat foods, but if you can tolerate them, add small servings of fatty foods to your diet.
Avoid fibrous fruits and vegetables, such as oranges and broccoli, that may cause bezoars.
If liquids are easier for you to ingest, try soups and pureed foods.
Drink water throughout each meal.
Try gentle exercise after you eat, such as going for a walk.

Some people with gastroparesis may be unable to tolerate any food or liquids. In these situations, doctors may recommend a feeding tube (jejunostomy tube) be placed in the small intestine.

Feeding tubes can be passed through your nose or mouth or directly into your small intestine through your skin. The tube is usually temporary and is only used when gastroparesis is severe or when blood sugar levels can't be controlled by any other method.

And believe me, I DO NOT want a feeding tube! An infected feeding tube does not sound like fun.

The Mayo Clinic says that treatments are:

Injecting a nerve toxin to allow the stomach to release food. Botulinum toxin type A (Botox) is a nerve toxin most commonly known for its use in treating skin wrinkles. Researchers have found that Botox injections relax the pyloric muscle in some people, thereby allowing the stomach to release more food into the small intestine. The benefits are temporary, however, and more studies are needed to determine the overall usefulness of this treatment.

Implanting an electrical device to control the stomach muscles. Electrical gastric stimulation uses an electric current to cause stomach contractions. Working much like a heart pacemaker, this stomach pacemaker, consisting of a tiny generator and two electrodes, is placed in a pocket that surgeons create on the stomach's outer edge. Stomach pacemakers have been shown to improve stomach emptying and reduce nausea and vomiting in some people with gastroparesis, but more studies are needed.

BUT, there is no cure. Each of the treatments have serious side effects. I haven't tried either one yet, but I've read about them. The Botox injections are temporary and I've read that the pain comes back a hundred times worse after it wears off. The pacemaker in your stomach, well, that could cause a whole lot of problems, not to mention that you can never get an MRI again.

I'll keep you updated on what works for me but everyone is different.