GI appointment update

Hello everyone,

So, I had my G.I. appointment on Wednesday, 19 May. We are keeping my feeding tube rate the same as the doctor said that with my bloating currently it would be impossible to increase my feed rate. We also discussed starting an antibiotic that would target the gases in the G.I. tract that causes bloating. The antibiotic stays in the G.I. tract and does not enter the bloodstream. My insurance also approved Motegrity. It is a medication that is supposed to help things move through my bowels. I hope this medication helps, and I hope my insurance approves the anabiotic that they want to start me on. Hope everyone has a good day and thanks for reading.

Ray

Feed intolerance update

I’m still struggling to tolerate my feeds. This is frustrating as I do not want to end up on TPN (total parenteral nutrition) gastroparesis is not a fun condition to live with. It literally translates to stomach paralysis. Chronic illness can sometimes be frustrating.

Thankful but grieving

I’m grieving the life I once had. The life where I could eat anything I wanted. Where I could just go to the fridge and get whatever I wanted to eat or drink. It’s almost been a year since I got my first feeding tube, and although I love my tube and it has given me my life back, I still miss the days of just eating. 
I don’t like relying on a central line to stay hydrated, but at the same time, I’m thankful for it to, because it keeps me out of the hospital, 
I miss the life I had before needing these medical devices, but I’m also thankful for these tools that have enabled me to continue living my life to the fullest. Though there may be days where I don’t tolerate my formula like now, I hope and pray that eventually a solution will be found. I don’t like being hooked up to tubes all the time, but if that’s what it takes to keep me alive then that’s what I will do. I’ve had to learn to be radically excepting and just except that this is how things have to be. Oh how I wish there was a cure for my conditions, but until that day, I will be ever grateful for my feeding tube and central line as tools to help keep me thriving and surviving. 

Nausea is so so frustrating!!!!

I hate nausea. It is o frustrating!!! I hate it so so much. It comes naturally with gastroparesis, but it is so frustrating. I had to vent my tube this morning because of it. Ugh!!!! I hate this disease!!!

Ray

Medical worries

Hello everyone.

I’m struggling with my feeds. I can only do 35ML per hour and my goal was 80. I’m far from that. We found out that it is just my body not tolerating the rate of the formula, not the formula itself. This is frustrating because I don’t want to have to do another admission to get things fixed again. Hoping we can avoid TPN because it has it’s own risks. Hoping I can get some relief soon and that my body will hopefully begin tolerating the formula at a higher rate. Hope everyone is well.

Ray

medical TW feeding tube formula issues and dissociation

TW medical and dissociation
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hi everyone,
we are struggling today. we are bloated because of our formula. we’ve been switching like crazy. Time loss and PTSAID is at an all-time-high. We are not dissociating when we are actually out as we started a new med called Neltrexone. It helps with chronic pain and staying more present when each of us is out. we have a chronic ear infection that we have aro be on eardrops for. Just stressed. Our dietitian isn’t listening to us either. She wants us to vent our G-tube three times a day. we don’t want to be on TPN…
Nicole 20

an email I sent my dietitian about formula

Hello Dustin,So, when we switched from 4 cartons to 5, they didn’t send enough cartons. I called the emergency person yesterday, and they said that technically, it wasn’t an emergency because I still had enough formula for overnight. I have 3 cartons for today and no more after that. I’ve been running liquid IV since yesterday afternoon when my cartons for the morning were finished. They sent me a total of 150 cartons with the 69 that they had sent when I got home from the hospital, and the 81 that they sent when we switched to the 5 cartons a day. I had already started to use 5 cartons a day from the 69 that I first got. The lady on the phone was blaming me for being out of formula, and she said that we could get the branch to deliver some if they had my formula in stock. She then said that if this happened again, that we would have to pay a $150 delivery fee. I’m on a fixed income… I just felt attacked when I called asking for help. Maybe not attacked, but blamed. Thanks for reading.
Ray

medical frustrations with fluids

So, I have POTS and gastroparesis and EDS. I have a port. My POTS doctor is only willing to give me 2 L a week of IV fluids for three weeks. I’m tube dependent as well. I also take Lenzess and so lose fluids there as well. If I didn’t take it though, I would be constipated. I went to my urogynocology doctor for pelvic floor biofeedback therapy, and my urine was a dark yellow color. So, I’m dehydrated. I can’t get more fluids through my tube than I’m already getting. He will not recommend any more fluids than what he is going to give me. I’m completely lost, because I keep telling him that I only get 1228 MG of sodium through my formula a day. I can’t mix salt or add anything else to my feeds because It can mess with how the formula is absorbed in the small intestines. If I don’t get more fluids after the three weeks, I will keep ending up in the hospital for dehydration. So, what’s the point of me having this port then? I’m just at a loss. Any advice? The POTS doctor is saying that hopefully my body will adjust. They are also leaving it to my GI doctors to manage the nutrition and hydration stuff, but the GI doctors don’t specialize in POTS… ugh!!!

Ray

Rayette Rucker

World Services for the Blind

Assistive Technology Instructor Online Trainee

Google Voice Number: 3146379985

JAWS 2020 certified

awkward

I’m at home, and I feel very awkward. Yesterday, the conversation was all about the restraunts people went to and how good the food was. I stayed out of the conversation. Then, they had my favorite meal from before I had my tube. It was lasagna with garlic bread. I just lay on the couch and pretended to be asleep. It was so hard. Just the smell alone was just…. But then, I thought of how sick the meal would make me, and yeah…. I’m fine when it’s one or two people eating in front of me, but when it’s a group, it’s overwhelmming… I also had to ask my little brother for help with pouring my formula into my bag, and I felt guilty doing it, because I thought I should be able to do this by myself!! I kinda felt like a failure… Then, my family told me my formula looked and smelled like baby formula and it looked and smelled disgusting. And I told them, well, it’s keeping me alive and left it at that.

Raych;