IVIG # 2-3 and a bit of an update

I didn’t write about my second IVIG because I was busy and exhausted. No excuses but that’s fact.

Anyway, my balloon for my GJ burst at the beginning of that treatment so my mom worked super hard and got me in to get it fixed. I had to take a day off to get it fixed, though. And I got a bunch of IVs. And I was swamped with school.

For #3, I had a really bad reaction to latex a fee days before and it flares my allergic reactions. So I reacted a good amount to the IVIG. They drugged me with 40mg zyrtec, 20 mg IV prednisone, IV pepsid, benadryl, and epi for inhalation. It helped some, but the allergies make me really exhausted and worsen my GI stuff. But I got through it! I also develop phlebitis in my veins (IVIG is like syrupy thick so it can really irritate the peripherals) and they all developed that after only one day this time. One of them even began to infiltrate (put fluid into the space around the vein), which was uncomfortable. Anyway, I got a total of six attempts over the course of three days. This was uncomfortable, to say the least.

As always, the side effects suck (sorry), but they pass relatively quickly. I’m still extra allergic though, which seems to be a side effect for me.

In terms of benefits, I’ve eaten some crackers and stood up/walked up the stairs without blacking out, so that’s pretty fantabulous! It takes a while longer to get a more pronounced effect, so we are trying to get more approved.

Also, I had a great birthday and am finally on winter break for school!

And yesterday I crushed my finger in the big garage door. It’s not brien though, so it should heal fast.

That’s about all for my little update – Merry Christmas / Happy Holidays!

Stupid stupid elbow IVs. Ugh…


15 tomorrow and what a year!

My 15th birthday is coming up shockingly quickly tomorrow. What a heck of a year it’s been!

I’ve learned an extraordinary number of new things, gone through massively difficult medical treatments and tests, started high school, and so much more. While it’s been arguably one of hardest years of my life, there have still been some great times. 

In this upcoming year, I look forward to learning to drive and hopefully eating.

#chronic-illness, #feeding-tube, #feedingtubeawareness, #gastroparesis, #ivig, #mcad, #mcas, #pots, #rare-disease

Intravenous Immunoglobulin (IVIG), Autoimmune disease, and they think they can fix me! (wait, what?!)

So in the ballpark of eight months ago, my GI sent me to cardio for POTS. This cardio clinic had a protocol for doing an echocardiogram on every new patient. I got the echo and my aorta was semi-enlarged. I was referred to genetics because of that and my hypermobility. Genetics sent me to pain management. Pain management did a ton of blood work and found some autoimmune markers (Gad65 and SSB). Sent me to neurology for consideration of IVIG.

While that massive backstory certainly wasn’t necessary, I still find it interesting how much the specialists bop around to other specialists before finding anything worth pursuing. I also use this sight to (sorta) record what’s happened, so anyway, now I’m verbosely explaining the explanation.

The real reason I’m writing this is because we think we may have possible treatment that could either really help or fix my problems! We met with the neurologist in early-mid August. She put me on a two week course of a bunch of prednisone. Prednisone helps with autoimmune diseases, so the idea was that it would show us a lot quicker and insanely cheaper if I may have improvement with IVIG. I took the two week course of the steroids and it helped significantly to tremendously with many of my symptoms. Because of this, we started the IVIG approval process.

Once it got approved I had my first treatment in early October. It was not easy. Because of MCAS, I had to do a really specific protocol to avoid serious side effects (namely aseptic meningitis) that made me take a ton of benadryl. So, obviously, I was exhausted. And a side effect of the treatment is exhaustion. And brain fog. And migraines (which I had for days). Of course, my school work didn’t let up, so that was stressful for me.

Apparently, my veins act veins act like an 80 year old’s. IV’s are difficult. They got an IV on poke #2 on day one and left it in until day three. With IVIG, they start it at a really low rate and work up to a higher rate. On day three, they were at the really low rate and my vein was hurting pretty significantly. The nurse decided to pull it and start a new one because that vein had been infused into for a while so it was probably leaking/’tired’. She managed to start the new one on poke #1, however, she dug around in my arm FOREVER. It worked well though.

I had a nasty (I think, don’t have much experience in the migraine department!) migraine on the days after the infusions.

Oh, I forgot to mention, they did it at home!! I preferred it so much to having to go to a hospital/infusion center. Home is much more comfortable.

So far, I have not seen too much of a change in symptoms. I do feel like POTS symptoms are a small amount better. However, it can take up to three months to take effect.

I am more writing this to document than anything else, it’s also late and I’m typing on my phone, so I hope it’s coherent!

How I organize my medical supplies + post surgery update

So it’s been just over a month and a half since my surgery and I can officially say I am fully recovered. It went really well, but it was a tough recovery. They placed a low profile AMT G-Jet button, which was the absolutely best case scenario. They also did a salivary gland biopsy to check me for Sjogren’s. Fun fact: your lip is completely numb (like after a dental procedure) for up to two months after the biopsy. At least I don’t have to chew very much! Anyway, I have some pretty bad hospital anxiety after some traumatic experiences back in May, so that part was tough. Also, ‘oral’ (through my J tube) pain medications didn’t work very well in comparison to the IV ones. The one they normally do had no effect and the one that ended up working didn’t last for very long. The surgery was on a Tuesday and I was released on Thursday, so not too long of an admission, but longer than expected. I don’t have too many more details about right after the surgery, it’s all still a little hazy. I do know my stomach went into a bit of a worsened shut down afterwards. I went from being able to eat 600-700 liquid low fat low fiber calories a day to 100-200. I am working hard to get back to where I was, though. I am at 500-600 right now, so I am really proud of that.

I love going out in public and having no one stare at me. It’s kind of awesome. I used to (with my NJ that I had for 9 months) be used to having people just staring at me everywhere I went and asking the rudest questions. (I need to update my list!)

However, this new tube is taking some getting used to. I was used to NJ land: change tape every three days, flush through med port every six hours, pour food into bag, turn pump on. That’s basically all there was to it. And one of my NJs lasted over three months, so I WAS fastidious.

Now I have two extensions + cleaning and replacing extensions, meds through the tube (which is more work, but worth it), changing the dressing around the tube and cleaning it and skin around it, venting/draining, everything discussed above, daily taping, more syringes, basically more stuff, believe me, the list goes on!

I AM getting a system down, which leads perfectly into the second portion of this post!

I am going to talk at length with pictures about how I organize my medical supplies. This includes how I organize my time dealing with medical stuff because (and I forgot to mention this!) I started high school a bit over a month ago! I am doing an online public school and currently tackling seven credits including chemistry and biology. I’m working hard to not get behind.

First things first, I always push as much medical stuff as possible to the evenings or weekends. This is because I am so utterly exhausted by the evenings that I can’t do schoolwork well so I have to use as much of my mornings as I can. Here’s my to do list in the mornings:

  • Flush J tube
  • Disconnect J tube extension
  • Change sponge + clean around tube
  • Reconnect J tube and connect G tube (includes taping)
  • Take morning meds (I push as many as possible to the evening, I also pre measure my morning meds (there’s only 3) in the evenings to save time
  • Make tube food if necessary, otherwise get it out of the refrigerator
  • Fill bag, load with pump into backpack

That’s about all for the morning, and it takes under a half hour, which is really nice for optimizing my morning time! However, it does lead to a lengthy (over an hour and a half) nighttime list. Here’s what I do at night:

  • Flush G + J extension
  • Remove both extensions
  • Clean extensions thoroughly (my patented method (not) is rinsing with hot water, cleaning the outside with goo gone because they get tape residuals on them, rinsing with soap and hot water, flushing it with straight white vinegar and letting it sit for five mins, then w/ out cleaning the vinegar out flush multiple times with baking soda water. The chemical reaction is mild because the baking soda is diluted, but something about doing this cleans the residual gunk out really well)
  • Replace sponge and clean around tube
  • Reconnect G + J extensions (includes taping)
  • Clean syringes
  • Measure and take night meds
  • Measure morning meds
  • Count out calories for the day to calculate how much I have to run overnight
  • Make overnight mixture (this includes my regular tube food, green juice, coconut water, collagen powder, water, salt, and multiple meds that can’t be given in a bolus)
  • Make tube food for next day
  • Set up overnight mixture
  • Clean dishes, countertop, food scale, etc
  • Do all normal person stuff (brush teeth, etc.)
  • Clean up room and bathroom (they get incredibly messy in just a day with medical randomness and school)

Also, throughout the day, I vent air out of my stomach and that takes about 5-10 minutes each time. Every week I have to replace a whole litany of supplies. I always do it on Sunday. It is a lot easier to remember if there is only one replacement day.

I now have these systems memorized, but when I was developing them I would write everything I had to do down and arrange it in a good order. For example, it would be silly to remove the extensions and then need to take meds because it would require a lot more finagling.

The way I develop them is something I call ‘cleaning protocols’. They are incredibly simple. It has an area, for example, the medical area in my bathroom. It has different times (every morning, every night, every Sunday, every home health shipment) Then you write down everything you need to do on the appropriate field. I shared my morning and evening ones for my medical area above. I include deeper cleaning on the weekly and monthly (every home health shipment). This keeps everything super clean, organized, and on track pretty consistently. I laminate them and check things off with wet erase markers until I have them memorized. Here’s a picture of the cleaning protocols for my room:


I am going to move on from cleaning and medical tasks and show some pictures of my supply organization. It’s quite elaborate, if I do say so myself 😀




This is my main storage area. It is a Pax from Ikea. It holds about 20 Kate Farms Peptide, my Cromolyn (it’s space consuming), sparkling water/green juice/coconut water, bags for food, farrell bags, extra syringes, extra sponges, alcohol wipes, adhesive remover, extra extension sets, extra clorox wipes, etc.



This is my sink. I use the blue sponge for cleaning dishes and the yellow sponge to clean the sink itself and counters.



This is my main supply area. It holds the things I use multiple times a day and need to grab quickly. From the bottom left: Adhesive remover and alcohol pads, syringes (side note in regards to syringes: I took a jar filled with marbles and stuck big straws in it. Put the main part of the syringe (not the plunger) on the straws and they dry a lot easier and tidier.), q-tips, syringe/tubing caps, extra partial meds, colored stickers, and sponges.


This is a second supply area that’s a little less medical. I have a pencil cup with scissors, pencils, highlighters, etc. I also have some medical tape with some sharp scissors to cut it better and a dog hair roller because I’m allergic to the dog so if I get dander on my clothes I need to take it off…obviously. I’m not sure that needed an explanation.


This is a vinegar rinse I use to keep things clean. It is a 1:3 ratio of vinegar to water and I change it weekly.


Extension cleaning supplies. Vinegar and baking soda water.

These are my drying racks. The smaller one (left) holds things like my cup for flushed and medicine cups. The big one holds large/less used dishes. I use my drying rack to store the dishes because I only have enough dishes to not quite fill the racks and I don’t have enough storage space to put it all away. Plus, putting it away is time consuming!


This is my medicine drawer. It holds medicine. Fun/useful hack: Take a pill minder you aren’t actively using and fill each day with one type of pill each. Then put a sticker on it and label it. This is easier because it consumes less space and you don’t have to open and close lids.


Tape, tube clips, etc. I really like grip loks for holding my tubes up. I support them with paper tape (only tape tape one I’m not allergic to, but I used to like transpore). I don’t know why tegaderm is still in there, I’m allergic to it now.


This is like my counter top. I have a brita water filter in the refrigerator that I fill the pitcher with. Hand sanitizer because sometimes I need to really quickly clean my hands. Using a scale is so much easier than using measuring cups/spoons. I just know how many mLs to put in and it’s more exact anyway. I use blender bottles to mix my tube food up with. I have to add a lot of salt and some meds and they have a little whisk that gets it really well incorporated. I also water it down because it is really thick and I don’t end up getting enough fluids with the densenesness. This is a largeish nightstand that is wood, so I put an Ikea plastic desktop cover on top (kinda like a placemat but it has grippy things on the base so it doesn’t slide around. It’s also quite large.).


This is a towel holding rod (not sure what to call it!). I have paper towels on the rod (I think that’s the most creative idea I’ve come up with, it’s very convenient.), Clorox wipes, and a VERY multipurpose washcloth. I use it for spills (yes, the yellow stuff happens to be intestinal fluid. I change it daily.), wiping countertops down, etc.


The trash area looks horrible but it’s really necessary. I put it in the weirdly large bathtub I never use. There is trash, compost, plastic recycling, and commingled recycling. They are all necessary, or otherwise I spend hours every week sorting trash. We believes strongly in recycling/composting (did you know you can compost paper towels?!?), so this is a good system for me, and I have tried MANY.

Last but not least, you have my awesome and tiny mini fridge. I actually LOVE it. It is down the hallway from me because I can spend an entire day hardly moving in my small spaces, so it forces me to walk around. It has the brita filter mentioned above, sparkling water, juice, tube food, meds, oral ‘foods’, etc.


If you made it all the way down here to the bottom of this long post, I want to say I’m impressed. I am a bit of a rambler sometimes.


I hope this post is to you what I needed nearly a year ago and first got my tube. I was desperately in need of some ideas so if this helps even one person, that would be awesome!

See? I rambled again.

12 invaluable tips and tricks for NJ tubes (and plans for surgery!)

I am saying goodbye to my NJ in one week after over EIGHT months with NJs. I will be getting a GJ tube on the 21st. I think I am excited. I mean, the recovery is going to be no fun, but the overall benefit is pretty high! I am going to take a minute to write a little list of upsides:

  • Gastric decompression
  • More discreet; less stares
  • Less frequent replacements
  • Not in my nose
  • Not as easy to displace
  • No tape on my face
  • Once healed, it’s easier to swim with (tangled in goggles, swim cap, hair; much worry about it getting caught)
  • Not so bad with colds

Because I have had a very long run with NJs, I thought I’d write about some tips and tricks I have to make the ‘nose hose’ more comfortable!

  • When you are getting it placed, always soak your nose with saline spray first and ask them to use the lubricant on the whole tube instead of just the tip. This helps massively!
  • After a few weeks, my ear was getting floppy and sore from always holding a heavy tube up. Now I always wear cloth headbands to hold the tube up. Before you connect the tubing, put the headband on. The tube should go behind the headband and then when you connect the bag’s tubing the headband will hold it up instead of your ear.
  • Always keep everything in the backpack. It is just so much easier! I have command hooks hung up everywhere to put my backpack on, and of course I can hang it on the IV pole. I spent the first month or two hauling an IV pole around everywhere I went. It was grueling.
  • The infinity pump is one hundred thousand times nicer than the kangaroo pump. Specifically request it right away. It is practically silent and it is incredibly lightweight.
  • There is a type of tape called mepitac and it is super soft. I almost always put it under my tube and I fully believe that is why all of my face skin hasn’t just fallen off. I also put tegaderm on top, and it works really well, though it is really annoying to remove. I have done some IV3000 and it is fine, just not waterproof. I don’t recommend transpore, because it is really itchy.
  • Never put durapore on your face.
  • Your nose and throat will hurt and be congested and make colds twice as miserable. Put antibiotic cream (neosporin, mupirocin) in your nose to prevent infection. Use nasal saline spray to keep it moist. If you are able, drink warm drinks (even warm water). This helps because you have mucus going down your throat because of the cold. It likes to stick to the tube and harden onto it. The warm drink helps it soften and come off. Cold liquids, ice, and popsicles help with throat pain a lot too.
  • If you have POTS, put your salt down the tube. It makes it so easy!
  • Get a routine. I always mix up my tube food in the same way, or otherwise I mess up. I always flush it at certain times (like after brushing my teeth) or otherwise I forget. It helps to write these routines down.
  • When people stare at you, stare at them right back. Hard. They then realize how rude they were being, get uncomfortable, and look away. After that, sometimes they say something weird about it. It’s kinda funny. You have to make the staring somewhat funny, because otherwise it makes you SO uncomfortable to be out in public.
  • Appreciate all that the tube does for you and be at peace with it. The first 3-4 months I hated it with a PASSION. Hating it just makes it harder to deal with. After I hated it, I developed a love-hate relationship with it and that wasn’t much easier. Now I am at peace with it, and it is so much easier to cope with. With that said, I am very excited for it to be off my face!
  • If you run stuff at night, you want the tubing parallel to your body, not perpendicular. When I first got the tube, I put the IV pole right by my head. I would frequently wake up with tubing wound around my neck from tossing and turning. If you put it near the foot of the bed, it can’t get wrapped around you.

#annoying, #calorie, #calories, #chronic, #chronic-illness, #enfit, #feeding-tube, #feedingtubeawareness, #gastroparesis, #mast-cells, #medical, #nj-tube, #pots, #rare-disease

I’m nervvvous…

  • I’m going to a different hospital three hours away.
  • It’s going to be a new doctor.
  • I’m going to be admitted.
  • There is anesthesia.
  • There is a new tube placement.
  • There is a manometer placement.
  • I will not be allowed to move for 24 hours.
  • I have to consume 400+ calories in less than 30 mins.
  • I am going to be given medicine that I showed an allergy to.
  • If it’s normal than they probably won’t have much to help me.
  • If it’s abnormal, they don’t have great solutions either.
  • All of this in less than 48 hours…

I am going to be getting antroduodenal manometry on Wednesday. I will try to remember to take some pictures of the whole thing and write a post afterwards. Here’s the schedule:

Monday: Clears all day and drive to a hotel near the hospital for the night.
Tuesday: Get endoscopic placement of the manometry tube. Spend the day waking up. Be admitted. Try to sleep that night.
Wednesday: Bright and early they start recording. At 10 am I have to eat the 400 cals. At noon they give me a motility stimulant. At two they give me a different one. The test is over at four. The doc should tell us the results. Then they attempt to put my NJ back in. Then I get discharged. Go to the hotel and sleep overnight.
Thursday: Drive home. Be done.

Random thoughts:

A friend gave me a reusable tourniquet for starting the IV. It is pretty cool! I think these are similar: https://www.amazon.com/Hooshion%C2%AE-Emergency-Tourniquet-Activities-Multi-color/dp/B016B5QN0I/ref=sr_1_2_a_it?ie=UTF8&qid=1526170835&sr=8-2&keywords=reusable%2Btourniquet&th=1

I plan to run an odd mixture of bone broth, collagen, coconut water, and saline through my tube on Monday for some protein and to keep my sodium and fluids up. Here’s my recipe:

3 C bone broth
4 T collagen powder
1 C coconut water
1.5 C water
1 t Himalayan pink salt

That will provide me with:

300 calories
51  grams of protein
2.5 gr sodium
44 ounces of water

…which is pretty good considering the fact that they are clears! (You can tell I spent a lot of time coming up with that recipe.)




I have a really awesome suitcase that I am using to hold my stuff: https://www.amazon.com/dp/B016IO9O9O/ref=twister_B0779B999Z?_encoding=UTF8&psc=1




Of course I will use another one of my awesome enfit tubes! https://www.vitalitymedical.com/corflo-ultra-lite-ng-with-enfit.html It’s the 8 FR. 43 Inch Length 3G wt w/ Stylet.




The long and short of it is that I am just incredibly nervous. I have anestesthia, radiology, new doctor, and admittance, all mixed in to just two days. The good news is, this test could bring me some answers I really need, and help find some treatment to have me feel better! (And then my nervous brain says ‘What if I get a false negative?!?’)



(That post had no spine and probably didn’t make incredibly much sense, but it was helpful to write down what I am nervous about)

#chronic, #chronic-illness, #cooking, #dairy-free, #enfit, #feeding-tube, #gastroparesis, #gluten-free, #manometry, #medical, #medical-testing, #nj-tube, #orthostatic-hypotension, #pots, #rare-disease

DO NOT call it ‘formula’ and my other tubie pet peeves

I have no idea why, but I hate it when people call my tube food formula. I guess it’s probably because it sounds like it’s for babies. I know the word formula simply means a formulation of food, but it still really upsets me! Also, I don’t like when people say you are ‘feeding’, because it sounds very animalistic. What do dislike people saying about your tube?

Current running list of what the tube itself has been called:

Yellow strip
Weird thing in your nose
Flotation device (no joke – I was in the pool and this older woman comes up to me and asks how it helps me float. I absolutely COULD NOT figure out what she was talking about until she finally said ‘the yellow cord on your face’. I explained to her that it doesn’t help me float, it’s not for swimming at all. She acted like she didn’t believe me.)

And my favorite:
Why do you have a pencil in your nose?

And some sweet little kid even told me:
That looks owy!

Some rude older lady asked me, “What is THAT?!” I kindly explained it is a feeding tube. Her response: “I guess you’ll be slender forever!” No, ignorant person. Just no. So many things wrong with that comment!

And then of course there is the stares…

#annoying, #chronic, #chronic-illness, #cool, #dairy-free, #enfit, #feeding-tube, #feedingtubeawareness, #gastroparesis, #gluten, #gluten-free, #mast-cells, #mcad, #mcas, #medical, #nj-tube, #orthostatic-hypotension, #pots, #rare-disease, #wheat