My Truths: Yammerings of a newly 24 year old

Disclaimer: This is not a J.K. Rowling post. I have no idea how it ends writing it now. It may make no sense ¯\_(ツ)_/¯. This is basically just a list of some random thoughts.

I believe you can accept and love yourself and still want to change parts of yourself.
I believe the ability to adapt is crucial to finding happiness.
I believe that differences are necessary for society.
I believe that artists and musicians do more for the greater mental health of our stress ball of a society than we give them credit and resources to do.
I believe we can all benefit from giving more people the benefit of doubt.
I believe that vulnerability is critical to human connection.
I believe that there are times to push and times to rest in life and that finding the perfect balance may be impossible but we shouldn’t stop trying.
I believe that sickness can be a big, important part of your life and still not define you.

k thanks i’m here all week



All I Can Eat App

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!

Feeding Tube Resources

All the things (that I can think of) I wish I had when I got a tube. *work in progress*

Feeding Tube/Supplemental Nutrition focused Companies/Orgs

Oley FoundationOley is home to many a great resource from conferences to webinars to blogs from tube fed families, to equipment loans and donations!

Some quick go to resources from them are:
Tube Feeding Tips Page
Choosing the Right Tube
Parent/Patient Recommended Accessories
Equipment Exchange/Supply Store
Recorded Webinars

Gastroparesis Patient Association for Cures and Treatment(G-PACT)

Feeding Tube Awareness Foundation
Useful Products
Infinity Pump Manual for Friends and Family
Taping and Site Care

Complex Child: online monthly magazine written by parents of children with special needs which often features resources and stories about tube feeding.
Tube Feeding Information

Replacing a low profile G or J tube

Blogs/Vlogs by People with Feeding Tubes (or their parents)

The Tube Fed Wife

Feeding Tube Awareness

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.

August is Digestive Tract Paralysis (DTP) Awareness Month

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

Comic of stomach and intestine by the awkward yeti

 

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)!

someecard

Alphabet Soup that is Mast Cell Disorders

Once you’ve racked up enough diagnoses and spent enough time in hospitals the lingo starts piling up and it can get confusing but I held on. Until I got to mast cell disorders and mmmaaannn it is alphabet soup up in here. MCAD, SM, ASM, IgE, HSCs, H, UFH, DAMPs, PAMPS, ATP, TNF, and more! The good thing is you could read one article about this stuff, memorize it and sound REALLY smart rattling it back off at some party. Furthermore, mast cell disorders are not well known, relatively newly discovered, and effect each patient differently. Simple right?

 

diagram of the role of histamine

So here is my attempt to spell (badumchh) it out for you guys. If you haven’t already, read my intro posts to mast cells here.

Types of Mast Cell Disorders 

  • Mastocytosis (rare)
    • Cutaneous Mastocytosis
    • Indolent Systemic Mastocytosis
    • Systemic Mastocytosis with clonal hematologic non-mast cell lineage disease
    • Systemic Smoldering Mastocytosis
    • Aggressive Systemic Mastocytosis
    • Mast Cell Leukemia 
    • Mast Cell Sarcoma
  • Mast Cell Activation Disorder (MCAD)
    *note: Mast Cell Activation Disorder and Mast Cell Activation Syndrome (MCAS) are the SAME disorder BUT they are not the same as the term “Mast Cell Disorders” which is an umbrella term for Mastocytosis and MCAD*

Difference between Systemic Mastocytosis (SM) and Mast Cell Activation Disorder (MCAD)

*note again: I don’t know enough about other forms of mastocytosis to formulate anything useful*

When looked at basically, the main difference between SM and MCAD is MCAD patients have the normal amount of mast cells in their bodies, they are just hyperactive and hypersensitive vs SM patients have too many mast cells throughout their bodies and they build up in various organs and cause issues. Symptoms of both can be identical and like most conditions, follow a spectrum from mildly affected to severely affected and can easily be life-threatening. High risks for both include anaphylaxis, severe bleeding from heparin release, seizures, organ damage from mast cell accumulation, even multiple system failure in severe cases. 

Common Treatments and Therapies

*note: I do not know of everything, this list is by no means exhaustive*

  • H1 Antihistamines (stabilize one type of histamine, mainly hives, headaches, nausea): hydroxyzine HCl (Atarax), diphenhydramine (Benadryl), cyproheptadine (Periactin), cetirizine (Zyrtec), levocetirizine (Xyzal), fexofenadine (Allegra), loratadine (Claratin), desloratadine (Clarinex)
  • H2 Antihistamines (stabilize a different type histamine, mainly GI): famotidine (Pepcid), Nizatidine (Axid), Ranitidine (Zantac)
  • Mast Cell stabilizers: cromolyn sodium (Gastrocrom), quercetin, luteolin, asprin (if allowed)
  • Leukotrine Inhibitors (respiratory): montelukast (Singulair), zafirlukast (Accolate), zileuton (Zyflo)
    *if you don’t feel like these are fictional sci-fi names by now… just wait*
  • Xolair (omalizumab): this is an injection that was originally marketed for asthma but works to desensitize the body. Must be taken at an office every time, can be very expensive and hard to get covered by insurance, can have different reactions at different times. That being said I know people who have had amazing results from it
  • Epinephrine injection (EpiPen & AuviQ) for anaphylaxis or anaphylactoid reactions
  • Diphenhydramine injection (Benedryl IV/IM) for those who react poorly to epi or as a first response for reactions or if patient can’t take oral medications

All right folks. Think that’s enough to chew on for now. More later to come later!slot hanging on to pole with text "my energy level on any given day is equal to that of a sloth on Ambien"

 

Blogs and Vlogs by EDSers

***At the suggestion of a friend I will keep two running posts to be updated randomly, this one for fellow bloggers and vloggers with EDS and another one for information, research and studies. Please let me know if any links are broken/nonfunctional or suggestions for additions!***

Blogs:

Vlogs: