Anybody else out there that has reached the point of tube feedings? Kinda bummed. Wondering if this puts me in the severe category . Just scared and looking for help from those who have reached this part of our journey.
Laurel, I had IBS since 2003, med controlled. I got sick in Oct 2010. By Mar 2011 started having pain up under my left rib cage. Over time we realized it was trapped gas and that became more intolerant of food. The foods that I ate we're dictated by the amt of gas nausea and pain. Last fall became a soft bland diet like apple sauce, mashed potato's etc. By Jan it was just graham crackers and saltines. I had a PICC line placed in December. For fluids sugar salt and potassium and was placed on liquid diet of OTC nutrition shakes. Went to Mayo Clinic in Feb and found out that I have delayed stomache emptying, very mild small bowel delay and that my colon is not working at all. I have also loss use of pelvic floor muscles, rectal wall strength, the internal rectal sphincter does not work at all and the anal sphincter is weak. So over last 6 months have been more and more incontinent of bowel. The Dr at Mayo is in research only. He calls it Enteric Neuropathy. His theory is that we get ran down and catch a virus in our gut. The virus itself can cause damaged nerves throughout the entire digestive tract and/or it weakens our immune system (which is primarily in our gut) over period of time making us susceptible to other bad virus' that attack the brain and spinal cord which as we know cause autonomic nervous system problems which would include or digestive system. So either way the nerves are damaged and can't receive a signal or the brain is damaged and can't send a signal. Now have NJ tube which goes from nose thru stomache and into jejunum (small bowel). I have all the other ME stuff too, but this is the one killing me...at very least it's a pain in the gut and butt lol. Thank you for your concern. Please take good care and stay happy!!!
See if you can get Vivonex Plus, which is an elemental diet. The idea is that you get the nutrition without having to break it down. Mark Pimentel has a protocol for using this with IBS for 2 weeks, with an excellent success rate. (It tastes terrible, which is why most patients don't like it... but if you've got a NJ tube, it should be fine.)
I'm less enthusiastic about the Osmolite for IBS, because it has casein (which will delay gastric emptying) and may also be harder to break down if you have any deficiency in your digestive enzymes from your pancreas.
Contact me offline and I'll give you the Pimentel paper, and you can discuss it with your doctors.