WHERE HAS THIS BEEN ALL MY LIFE? This app, available for free (with bottom ads) on iOS and Google Play store and is an app designed to help people with food intolerances find foods without xyz or low in xyz. The categories are customizable and you can turn on/off intolerances at any time and the search parameters will adjust.
The app allows you to search for foods that contain the following: lactose, fructose, histamine, gluten, sorbitol, and salicyclic acid. There is a search function, you can look up foods by category, and even input your own custom foods or meals. This app is very exciting from a mast cell perspective as it can be difficult to find information on histamine levels in foods but can really be helpful for anyone with food allergies or intolerances or who are on specific diets.
Below are some screenshots of what the app looks like, and how it is laid out. I have not tested it for accessibility yet, but will update if I do. This post is not sponsored or affiliated in anyway, I was just thankful someone showed it to me!
February 4-8th was Feeding Tube Awareness Week. This post will be mostly about types of feeding tubes and feeding as well as some possible reasons why someone might use a feeding tube as I have found few people actually know much about tubes. Ideally, I will also be creating posts about tips and tricks for living with a feeding tube and my experience as a young adult who uses a feeding tube. *lol I tried to get it done on the actual week*
Types of Feeding Tubes
Nasal Tubes
The two main types of nasal (up the nose) tubes are nasogastric (NG) and nasojejunal (NJ) tubes. These are thin, flexible tubes that are inserted through the nose. Both tubes are primarily for temporary and trial use and can often look similar from the outside. The main difference between these two tubes is where they go inside the body. These tubes can be left for 2-6 weeks per tube.
NG tubes are tubes that are inserted through the nose, go down your throat, and end in your stomach. These tubes are common inpatient and outpatient for acute needs or for temporary trialing of tube feeds, however, some patients chose to use NG tubes long term as (with training) they can be inserted and removed at home and therefore can only be on their face while feeding (usually at night in those cases)
NJ tubes are tubes that are inserted through the nose, go down your throat, through your stomach and the first part of your small intestine and into your jejunum. These tubes are less common and need to be inserted by a doctor with imaging to guide the tube into the right place. Many patients have NJ tubes if they have significant vomiting, have an improperly functioning stomach, or cannot tolerate feeding into their stomachs.
Surgical Tubes
There are three main types of surgically (or endoscopically) placed feeding tubes: gastrostomy (G tube), jejunostomy (J/ “straight J” tube), and a gastrojejunostomy (GJ tube). While these are considered more permanent tubes, they can be removed if the tube is no longer needed. These tubes are placed by creating a stoma, or opening that allows the tube to connect to the stomach or intestine, essentially it is an extreme body piercing.
Low profile G tube on left, traditional g tube on right
Within these options there are also some differentiations based on the type of tubing and the securement device. Options vary from traditional tube (aka danglers) to low-profile tubes that sit more flush with the skin. Tubes can also vary in how they are held in place on the inside: balloon (filled with water), a hard bumper, or a capsule shaped bumper. Most tubes need to be changed out every couple of months but some can be changed out at home by the user!
That girl has a feeding tube but just ate some cookies! They must not need the tube!
There are many different reasons why someone may need a feeding tube. Some people are able to eat and drink and still needing a feeding tube. This can happen either because they have a very restricted or unreliable diet/food tolerance or because they cannot eat or drink enough to sustain themselves purely on oral intake. Some people can eat, but it makes them very sick and so they only eat on special occasions, however there are plenty of people with feeding tubes who cannot eat or drink at all (NPO). Whether someone can or can’t eat orally does not correlate to how much they need a feeding tube or how sick they are!
What are some reasons someone needs a feeding tube?
There are countless diagnoses that may require a feeding tube such as dysphagia, cancer, gastroparesis, mast cell disorder, IBD, spinal cord injury, muscular dystrophy, ALS, MS, and many many more! Generally, people who need feeding tubes either: have difficulty swallowing, difficulty digesting/absorbing their food, have risk for aspiration (breathing food into lungs), cannot chew, have multiple food allergies, or have a gastrointestinal disorder that impairs their digestive tract.
Digestive Tract Paralysis (DTP) refers to a group of conditions that affect the motility, or speed in which your body digests food and liquids, such as gastroparesis (GP), chronic intestinal pseudo obstruction (CIPO), and colonic inertia (CI). I have been diagnosed with esophageal dysmotility, gastroparesis, and colonic inertia and all have greatly effected my health and lifestyle.
Gastroparesis, or paralyzed stomach, is a condition where your stomach takes too long to digest and empty your stomach. GP can be primary, secondary, or idiopathic and can range from mild to severe (little to no motility). Common forms of secondary GP are diabetic GP, Post-abdominal surgery GP, post-viral GP, and GP from eating disorders. Some symptoms of GP according to GPACT are:
Early Satiety after a few bites of food
Nausea (especially after eating)
Vomiting (often undigested food from hours or even days before)
Abdominal Pain
Hiccupping
Excessive Belching
Bloating
Weight Gain
Weight Loss
Loss of Appetite
Malnutrition
Dehydration
Heartburn or gastroesophageal reflux which is not controlled by acid suppressants
Erratic blood glucose levels
For me, dysmotility has hijacked my love of food and made me realize how much our culture revolves around food. Out to dinner, snacks at the movies, family meals, holidays, snacking, period chocolate eating, late night iHOP runs, and lunch breaks at work. When you can’t eat or can only eat a few types of food in small amounts, you miss out on a lot. Not to mention if certain food smells make you nauseous- my DTP friends can probably relate to being nauseous and starving at the same time. Food is everywhere. DTP is part of the reason I have a feeding tube which givesme freedom but is also a pain. in. the. ass. I have to be fed into my intestine to bypass my damaged stomach (intestines are more functioning though also damaged). This requires being attached to a tube and pump anywhere from 12 to 24 hours a day.
But DTP doesn’t just effect eating, it effects medication absorption, acidity levels, bowel control, hydration, energy levels, weight, and definitely clothing sizes (bloating is no joke). We need a cure, we are starving for a cure. While there are some treatments available they often come with difficult side effects or are invasive. More research needs to be done for a cure to be found! To donate or find out more please visit the Gastroparesis Patient Association for Cures and Treatments (G-PACT)!
Okay… so I wanted to touch on a bunch of different things that don’t have another home. I’m feeling very brain foggy/disorganized so if none of this makes sense… then it’ll probably at least be entertaining.
#1: How long it takes to get anything done in the medical world
Let me preface this with I ABSOLUTELY know this is not all on the medical professionals. There’s shit with insurance, documentation guidelines, hospital rules and regulations, and just overweighted caseload that influence this issue. But seriously, it gets ridiculous.
Some examples:
I met with a new GI July 22nd. He seemed on top of his game, familiar with my conditions, and agreed that action needs to be taken to get by nutrition etc back on track. He had lots of medical history, former testing, current summary… everything he needed. He ordered a SmartPill test (camera pill you swallow and it takes pictures and does testing as it goes through your GI tract… pretty cool) and an upper and lower scope (sticking cameras up your arse and down your throat…yum). I had already had a gastric emptying test to diagnose gastroparesis (delayed stomach emptying), but we had no idea the motility of my intestines or if they absorb any of the nutrients. Fast forward 4 weeks until my scheduled SmartPill test swallow. I had to go off all GI meds for a week (which means not only more of the daily yuck but near constant acid coming up my throat), get a ride to the hospital, fast beforehand, take off work etc etc. I get there and they’re (nurses) doing the pre-procedure checklist. They get to question #3 “do you have any implanted devices?”… “yes… but the doc knows about it… we talked about it” “Let me give him a call” *comes back 10 minutes later* “I’m sorry, the implant disqualifies you from doing this test, I have to cancel it… the doctor will give you a call (lol jk)”. Okay, so waste of time. I messaged my doc later (shock and awe… he never called) and asked if we could schedule the only other test one can do to get the same data as the SmartPill. His response: we will talk about it next appointment. So you’re thinking aight… that’s okay. Wrong. Not only is his first available not until mid-November, but his office won’t schedule any follow-up appointment until after I complete, and get the results back from the scope scheduled for September 14. So basically I’m SOL until at least December timeframe…. assuming that visit won’t just mean going over EGD results and him ordering the same test I asked him about months earlier. Don’t worry guys…it’s only nutrition.
It took my PT 3 weeks to write and sign a sentence saying “patient needs new custom wheelchair back to maintain posture and for support”.
It has taken my doc 5+ weeks (he was on vacation for one but still) to write and sign a prescription, note, and LOMN saying “patient needs custom bilateral AFOS”.
I’ve been waiting for records from one doctor for 13 months despite several verbal and written reminders to him and his staff.
#2: My two cents on the Epipen bull:
As someone who is literally allergic to life (sunlight, heat, cold, stress, talking, meds etc) and must always have Epi on my person and has unfortunately had many uses of the autoinjectors I am pissed. But not just by Mylan (jerk face mcugly butts) jacking up the price of Epipens (500%), but the fact that I have multiple friends who have to make the choice between life-saving medicine, therapy, and treatments and feeding themselves or their kids.
And we aren’t even talking about those without insurance. Most of my friends are lucky enough to have some form of health insurance (even if its crappy) and are still drowning in bills and medical debt. There is not a single day that there isn’t a medical bill arriving at my house and that is just ERs, hospitals, and doctor’s bills. Plus medicine, devices, PT, testing, surgery, and prolotherapy (not covered by any insurance as it is “experimental”). I have been incredibly blessed with kick-ass insurance (although still a PITA) and to be able to stay afloat in the bills. Despite all kinds of preventative and prophylactic treatments, there is still only so much you can do to keep ahead of things and emergencies still happen. Epipens also only are viable for a year. They come in a 2 pack but most need more to keep one at school, one in the car, and one on your person. For most, it is now cheaper to go to the ER for anaphylaxis treatment than to use their Epipens. Honestly, all I got is “fuck you Mylan”. No excuses, epinephrine is cheap, autoinjectors are relatively cheap. Not to mention their tax evasion strategies.
#3: Depression
Since the people who 1) even read this blog and 2) read all the way til now and aren’t asleep from boredom are probably the people who care, I saved this one for last. As some of you have noticed, I’ve been dipping into another depressive phase. Depression and me are buddies now so it’s cool. It is also normal and a big part of chronic illness so don’t go panic on me. So don’t be alarmed if I’m a) super clingy and annoying or b) super avoidant and grumpy gills … that’s kinda just how it goes. See previous post RE: things you can do to help.
Chronicles of a Professional Patient 