To be or not tubie……

When you can’t eat by “normal” oral routes and have to find or gain alternative routines…you are deemed a tubie. There are several different types of tubes, and many of which I have been on.  There are ng-tubes – nasogastro-these tubes are inserted up through ones nose and fished down into the the stomach. There are nj-tubes,-nasojejunum – similarly up the nose but secured into the jejunum. Both allow food, fluids nutrients and medications to be delivered directly into the stomach or small intestine by bypassing the mouth.  G-tube-gastronomy tube which delivers food directly into the stomach and also allows for venting of stomach contents for gas and belching and discomfort. Central line, mid-line, PICC line, Hickman (Double Lumen), these are all routes of more invasive lines where wires and catheters are inserted or fished into veins, bu the heart, through main arteries to gain access to ones systems for Parietal Nutrition. This can be a harsh way of living because one may be getting their only nutrition through their veins and nothing by mouth, stomach.  One may still be experiencing “hunger pangs/pains” as well as is at very high risk for infections- sepsis, multiple or repeated line infections, blood clots, blood sugar instabilities and other complications.

I personally have been on the ng, nj jtubes and now TPN lines.  I’m on a liter of  Lactated Ringers USP fluids, which are Sodium lactate, sodium chloride potassium chloride, potassium, Calcium chloride, sodium, osmoliarity, lactate- this i take daily because I cannot get enough fluids in orally to stay hydrated and often vomit if I try to ingest too many fluids in a 24 hr period of time too fast.  I also cannot ingest solids.  I can eat at times small bites of pudding (Chocolate, caramel rice), soup (condensed forms typically cream of chicken)all forms ,Ensure, Boost, Glucerna – high protein low-carbohydrate options.  My biggest issue is that no matter how little I eat, my stomach still does not digest what goes in and the food does one of two things.  It will either sit and stay in my stomach undigested in my stomach for days on end and I will be bloated, nauseous, sick and eventually vomit several days later all the undigested food or the food sluggishly moves through my system whole and undigested only assisted by the assistance of copious amounts of Senakot or Mirilax to help me have a bowel movement.The peristalsis throughout my entire GI system has come to a near and complete halt.  I’ve had bowel impactions the size of NFL footballs, illius’, bowel obstructions , all due to my nerves not firing and allowing the contractions in my GI tract to function or to move food and everything necessary along. It’s got this reason for me in particular that the jejunum tube did not function for me.  I was not able to sustain it in my tract.  I had severe pain and could not tolerate feeds above 30 cc (about 1 Tablespoon an hour).  It would put me in extreme physical pain, nausea and vomit. Along with the gastroparesis and malabsorbtion issues I have,  I also suffer from SIBO- small intestinal bacterial overgrowth – along with mastocystic colitis and my abdomen was so swollen with constipation and inflammation that no feeds were getting absorbed and were actually pushing out and I was immediately in pain and  vomiting.  When I tried to flush my tube and went too fast Iin).  This pain is almost unlike no other in my personal opinion.  It takes the everyday pain of gastroparesis, the nausea, acid burning sensation, tearing, shredding cramping and retching to a whole new level.  For me the few (20 oz-40 oz) I can typically get in becomes virtually impossible.  They all make the pain so great and me gag, retch and vomit. bites of food (pudding) immediately regurgitates back up.  I’m bed ridden in the fetal position and attached to my heating pad.  In fact I have a small heating pad that goes practically everywhere I go.

Despite being tube fed I can still go into terrible Gastroparesis flares (one of which I’m currently in.) The normal pain, acid burning, retching, cramping and everything else that comes with gastroparesis is amplified tenfold. The Edward Scissor-hand and Freddie Kreuger feeling in your stomach that is waging war that wants to come out never ends.  This disease never seems to take a break.  It seems to go from bad to worse.

Travel-any-just leaving the house is a project.

Today was a disaster… I changed bags and didn’t remember to bring saline and heprin flushes and my tubing came detached from my central line, unbeknownst to me while I was in Walgreens.  Suddenly this gentleman comes up to me and says mam- excuse me but I didn’t know if you knew that you were bleeding.  I looked down and was standing in a pool of blood, there was a pool back where I had been standing and a trail everywhere I had walked of which I’m currently walked. This is the second time it has happened to me in their store.Needless to say they were LESS THAN THRILLED WITH ME despite the profuse apologies I expressed.  I was so embarrassed and ashamed.  I quickly closed my valve but I had nothing to flush with.  Typically I have to pack saline and heprin flushes to go with me but had none with me. Just a day trip out of the house usually means an additional bag filled of saline flushes, heprin, batteries, alcohol wipes, gloves, extra tubing (for reasons and days just like this) .  It takes extra long to plan to get out and get ready.  Any overnight or real trip really takes effort and planning.  All of my TPN and fluid needs to be refrigerated and taken in refrigerated bags and with ice packs to be kept cold till the destination is met.  I haven’t had to fly anywhere yet but I’ve already planned out thoughts in my head about what trying to get through TSA  might be like with a feed bag and it’s battery on may be like with it beeping and all the noise it makes.  I already ALWAYS get pulled out of  line and “profiled” for some reason.  I was on a train once coming back from Florida and was talking to this gentleman who happened to be a profiler for the FBI in Washington D.C. and he explained to me because i am a single white female and I always appear to be traveling alone and am petite he explained why they TSA has their suspicions. Dreading the day!

This disease still needs so much research.  Its considered a rare disease.  It’s listed with NORD-National Organization of Disorders.  Only about Five (5) Million Americans are Afflicted with this condition and it does affect more women than men.  There is no cure for this disease.  This disease typically comes from conditions such as , diabetes, other conditions such as gallbladder disease, Autonomic Neuropathy, botched or failed surgeries like gallbladder , kidney,liver, pancreatic, lap band, bypass or other, any surgery that may nip or damage the vagus nerve.  Some have gotten it post viral, some are idiopathic (unknown ideology).   I just keep hoping that we get closer day by day to a cure.

POEM: Tomorrows

When each to day hating myself, having no. love.

My heaorrow comes I curse the Heaven’s above,

For I live ert lays so heavily burdened its3wsz/ejjjjjjjjjjjjjjjjjjjjjjjjjjjj.m, ,m  with                                                                                                                                                                                                                                                                                                [lll