Should Your Tubie Wear That Swimsuit?

This post was inspired by someone's post that I saw on Facebook, but more importantly it reminded me that it's something a LOT of tubie families deal with. Parents themselves may be more cautious on what their tubie should wear because they aren't sure how to approach the issue. They may not know whether to think of their comfort or a stranger's comfort when seeing a medical device that they've never seen before. 

(Extended) Family and friends can bring a whole new dynamic to this issue. They're less likely to understand the significance of the tube and don't want the tubie to look anything different than their idea of "normal." They believe the tube is something private. Something to cover up, and something that others simply "don't need to know" about. 

I'm here to tell you why they're wrong. Simply put: 

Feeding tubes help us eat. They help us get nutrition so we can grow and stay alive just like with any other person who gets all of their nutrition orally. 

Swimming in pools and at beaches is completely okay and supported by not only tube manufacturers but also doctors. Not only is it plain out fun but it can be therapeutic, too!   

It's not gross, unsightly or unhygienic. If a piece of life-saving silicone that is smaller than an inch (let alone any size tube) effects someone that much that they'll ask that person to cover up, or think that they as a person are less beautiful because they're unapologetic about it... I think they might be a different problem! To make it a little easier, I made this fun chart: 

To tubie parents who are nervous about the swim season: 

Know that whether or not you choose to cover up your tubie's tube, all options are okay! Sometimes one pieces are so much cuter than two pieces. And sometimes trunks with a shirt or a wetsuit look more awesome when compared to only trunks! Maybe you want to cover up the tube with tape or Tegaderm to keep the sand from getting onto the stoma... That's fine. Maybe you'll cover it up so your tubie will be less self-conscious. That's okay, too. All suits are okay. But let it be your (or simply your tubie's if they're old enough) decision! Not from the false idea that tubies are less than or weirder than because of that tiny piece of silicone. 

Rock on, parents! 



Court Ro 

Who am I? Why did I switch formulas?

Hi! I go by the name of "Ro," for short. I'm a teenager who has a rare form of muscular dystrophy. Some of the muscles that it affects the most are the muscles that I need to eat, so naturally, I became a "tubie" in 2009. (I've had one ever since, and will for the rest of my life.) When I first got my feeding tube (g-tube) I was able to tolerate the standard (and horrible) formulas that they give just-about everyone. I had no diagnosed gastrointestinal problems, and did not see a GI doctor. Over the years I began to have problems, eventually being diagnosed with delayed gastric emptying and poor weight gain / failure to thrive (in adult). 

It's safe to say that I've always been particularly thin my entire life, but as my muscles have gotten weaker, and when I get sick - it's now easier for me to stay sick longer, not eating when I was sick just wasn't going to cut it anymore. I needed to have a way of nutrition during all times. The feeding tube surgery was great... I thought it was going to hurt. And I mean hurt - a lot. The recovery process was the part that hurt the most, and part of it was from it being flat out annoying. If you go too long without cleaning the stoma area or moving your (g-tube) at first, granulation tissue can form and it's horrible to get off. But that's enough about why I have a tube. 

I made this post to show a list of ingredients that are in the (latest) formula, Peptamen Jr. 1.5, that I used before I switched over to Real Food Blends. I've highlighted only a few of the ingredients that should catch your eye. These are ingredients that are in many of the top commercial formulas out there.    

Ingredients in (unflavored) Peptamen Jr. 1.5:

Water, Maltodextrin, Enzymatically Hydrolyzed Whey Protein (From Milk), Medium Chain Triglycerides (From Coconut and/or Palm Kernel Oil) and less than 2% of Cornstarch, Soybean Oil, Canola Oil,Fructooligosaccharides (Soluble Fiber), Calcium Phosphate, Soy Lecithin, Tuna Oil (EPA & DHA Source), Inulin (Soluble Fiber From Chicory), Potassium Chloride, Magnesium Chloride, Sodium Phosphate,Guar Gum, Potassium Citrate, Sodium Ascorbate, Choline Chloride, Salt, Taurine, Alpha-Tocopheryl Acetate, Magnesium Oxide, Inositol, Ferrous Sulfate, L-Carnitine, Zinc Sulfate, Calcium Pantothenate,Niacinamide, Vitamin A Palmitate, Vitamin D3, Phytonadione, Manganese Sulfate, Thiamine Mononitrate, Citric Acid, Pyridoxine Hydrochloride, Riboflavin, Copper Sulfate, Beta Carotene, Folic Acid, Biotin, Potassium Iodide, Chromium Chloride, Vitamin B12, Sodium Selenate.

Here are reported symptoms from these ingredients:

Maltodextrin - Can cause allergic reactions, bloating, AND flatulence (farting).

Soy Lecithin - Common side effects include: nausea, stomach pain, bloating, diarrhea, and skin rashes.

Potassium Chloride - The most common side effects are: diarrhea, gas, stomach discomfort & vomiting.

Magnesium Chloride - Can cause diarrhea.

Potassium Citrate - Possible side effects: abdominal or stomach pain, diarrhea, nausea, vomiting.

Salt - Can cause high blood pressure, kidney problems, and more.

Magnesium Oxide - Common side effect: diarrhea.

L-Carnitine - Somewhat common side effects: stomach cramps, diarrhea, headache, nausea & vomiting.

Zinc Sulfate - Nausea, vomiting.

Folic Acid - RARE but side effects that have been reported are: nausea, flatulence (farting). 

Potassium Iodide - LONG-TERM effects may include: confusion, severe headaches, unusual tiredness, weakness/heaviness of legs.

 These are ingredients that are in many of the top commercial formulas out there.    

Guess what the most common symptoms that I had were when I was on Peptamen Jr. 1.5? I had bloating, flatulence (farting), stomach pain, occasional diarrhea, occasional vomiting, and occasional nausea. ALL of these symptoms stopped when I switched formulas.

♥

(And just for fun's sake, I thought I'd leave the ingredients of Real Food Blends below. Notice something different?)

Orange, Chicken & Barley - Chicken, Barley, Carrots, Water, Orange Juice Concentrate, Ginger, Grape seed oil and sunflower seeds.

Quinoa, Kale & Hemp - Water, Kale, Grape Juice Concentrate, Hemp Powder, Extra Virgin Olive Oil, Quinoa & Cinnamon.

Salmon, Oats & Squash - Water, Squash Puree, Salmon, Pomegranate Juice Concentrate, Rolled Oats and Flaxseed Oil.

Real Food Blends: Review

Prelude: First, I'd like to say that this review was originally written several weeks ago (to Julie Bombacino, the woman behind RFBs) but I thought "why not make a blog for this?" so I've posted it here. I see so many kids who have improved from Real Food Blends but are unable to tell their parents and/or caregivers just how much of a difference real food makes, so here it is... This post is a review of the three main blends/"formulas" from Real Food Blends.  

Review:

I just have to say, I'm beginning to really love Real Food Blends! I just recently had a month-long hospital stay and surprised just about every nurse that I had (almost 56 of them!) with my Real Food Blends. They looked at each one in amazement, and even had fun asking me which pack I wanted at my various feed times. Something that I would've never been asked if I had other formulas.

During my stay, I got transferred from the ICU to the Pulmonary floor/unit. Surprisingly, about 90% of the kids on that floor have a feeding tube, along with their respiratory issues. And not surprisingly, I was the only one who used blended foods -- Real Food Blends! On certain days I was bombarded with questions about how I found RFBs, what formulas I previously used, and what happened when I switched formulas.

When I was admitted into the hospital, I weighed 69lbs. When I left, I was 74lbs. On commercial formulas I could manage to lose many, many pounds in a month. (Once I even lost 10 pounds at a six-week doctors visit!) Rarely have I ever gained 5 pounds in a month. I hope that by my next doctor appointment that I gain another 5.

I'm the first, and only, patient in my doctor's Neurology department that has ever tried Real Food Blends. My doctor and nutritionist were unsure that I would be able to fully tolerate and digest RFBs. In fact, my nutritionist flat out told me that she didn't think I would be able to. I cannot wait to tell them how awesome that it is! I can't wait to tell all of my friends with similar conditions to try it.

Oh, and another thing... Poop. (I didn't want to mention it, but I kind of had to!) Bowel movements are NO problem with RFBs. The first few times I that I first tried a single blend pack -- I'd have to have a bowel movement immediately after I finished one! No constipation. No loose bowels. No pain. No offensive smells (haha). I wasn't sure that I could have it all, but apparently I can!  

To Julie: Thank you so much for using your son's inspiration and going through with creating RFBs. I used to take many medicines for my gastrointestinal problems -- hardly helping, if at all. I used to have diarrhea, bloating, and general stomach pain when using commercial formulas. Hopping from formula to formula, I am SO happy that I discovered RFBs! My doctor may have been unsure about the switch - but I am so sure that it's all been going well. I can't thank you enough! I am ecstatic!

Side-note: Yes, I know. It looks like I was paid to do this, but I promise that I wasn't. I'm your average teen who has been using a feeding tube since 2009. I'm just your really enthusiastic teen! The fact that for once I stopped experiencing stomach pain -- that the only thing that I experience with these packets is a full stomach, drives me crazy every time I use it. And yes, I still enjoy picking which packets I want to use. (The quinoa one is my favorite! The salmon one goes super easy on the stomach, too!)

For those of you who have wanted to try RFBs but are unsure of if insurance will cover it -- please try. I was immediately covered for Real Food Blends with Cigna (TX) insurance. And the cool thing is that I'm pretty sure that my second (Medicaid) insurance might've covered it, too. I'm a happy camper, and you all should be, too.

If any of you have questions about my experience with Real Food Blends, please send me an email at:

projectcode18@gmail.com

(or check out my blog comparing my old formula to Real Food Blends by clicking HERE.)

If you have any questions about insurance coverage, the HCPCS billing code for Real Food Blends is: B4149. Call your insurance(s) and ask if that code is a covered benefit!