For a long time I thought I could drop my liquid vitamins in my flush bag! So now that just push them through with my meds in my J port. When I vent it’s all that bright vitamin looking pee like very bright and yellow. But when I actually pee it doesn’t look like vitamins at all. Normal color! I tried googling the subject but it just couldn’t understand what my question was? I mean I have an educated guess…
I smoke medical marijuana for some of my symptoms and it helps better than anything else I have tried! I’m at point that I can’t eat or drink anything by mouth. I have a GJ tube that feeds in my small intestines. I don’t see many posts on the subject but I was curious if anyone else finds it helpful? Then at night I smoke a little more and then I’m calm and could care less about my symptoms! I have other chronic health conditions as well. But when I smoke my nausea is gone!
So this is the second time my pump has become defective. Just over a month ago it just stopped working and now this one started squeaking where you put the caset (it’s a kangaroo what ever it called! lol) and became so loud you can’t tolerate it and it keeps beeping “clogged”….
Last time it took 3 days to get my pump! I do nothing by mouth!
It’s too late where I’m at to contact my doctor, but I’m curious if I could flush my GJ tube with formula? I push all my meds through! I already have a flush bag as well.
Does anyone have any suggestions on what I do without any nutrition until Thursday?
I’m sure like everyone here, have a very long story and ended up being diagnosed with FD. Fast forward to I’ve been on tube feeds now for 8 months. I have a GJ tube because my feeding has to skip my stomach. I am unable to digest food or liquids now. I have constant nausea/vomiting, nothing will digest. So I’m nourished and hydrated 22 hours a day. All it’s doing is keeping me nourished but none of my symptoms went away! I can’t tolerate the Nortriptyline it makes me suicidal! I tried it twice… Pain is my worst symptom and I have no symptom control for that (medical marijuana takes care of some of my symptoms). By the grace of God I have the option to vent…
Because I can drain my stomach and it helps with bloating and nausea.
PPI’s are a joke!!! Zofran barely touches my nausea. Soooo I was referred to an anesthesiologist/pain specialist who specializes in Ketamine infusions for the neuropathic pain we have from the FD. I was able to get into a one year wait list for a trial. There was a cancellation and I got in within a week! So I went through one week of low dose infusions. FD is a condition that ketamine can help with the pain! Because it’s nerve pain. It takes a couple times to start seeing a difference.
So here I am and now I’m losing my muscles in my entire digestive system. I am unable to swallow on a regular basis now. Which means basically because I haven’t eaten in so long I haven’t been using those muscles. I literally I have to swoosh and spit just to wet my mouth.
I was diagnosed with gastropuresis last Wednesday. That was my first diagnosis a year ago! I had a scope and since I had so much still in my stomach after I fasted for like 20 hours before they just diagnosed me! Then the gastric emptying study said otherwise. So after normal everything I was diagnosed with this awful condition!!!! My quality of life is terrible. I know I’m no different or worse than anyone else on here, but fuck! I also have a psychologist who specializes in the gut brain connection and stomach conditions. I do groups and individual and it actually has been extremely helpful! I don’t think I’d be here if it wasn’t for her! She had a hypnosis group for 8 weeks and I know hypnosis may sound sketchy lol, but if you do it on a regular basis it’s actually rewiring our gut/brain connection specifically for FD!!! Helps you learn how to handle your symptoms better because I was losing my shit! So thanks for reading if anyone did! Just needed to vent I guess! But has anyone else ended up with a feeding tube from this? Or hear the success from Ketamine infusion for pain?
I was having a conversation with my 23 year old Marine son last night…. Anyway I smoke weed for symptom control (extreme nausea and vomiting and pain) … Long story but I just became extremely malnourished and dehydrated so my dietitian has me at a very high rate on my pump (for me anyway!)
And extra electrolytes in my flush bag….
I don’t know why, but this text was funny to me…. See in comments!!!
Sometimes humor on our darkest hours is exactly what we need!
How do you share a photo on here? It won’t let me????
I’ve only been feeding through a tube to my intestines about 7 months now. I have gastropuresis and Functional dyspepsia.
We are hoping one day I can tolerate food…
Well I talked to my dietitian today because last week I was in a trial for ketamine infusions for chronic pain (stomach). I couldn’t feed 7 hours before I couldn’t run it the hour and a half session, and an hour drive home. I run at 40 22 hours a day! So I was barely getting 2 cartons a day in for that whole week and before that my pump broke and it took my supply company 3 days to get one for me! Week before that I had my GJ tube placed… So I basically hit rock bottom today because of it.
Question is…. My dietitian things all of my digestive muscles from swallowing to the rest of my digestive system are not functioning…. I have not eaten by mouth since I started tube feeding! She asked me if I ever have trouble swallowing? Well more often I can’t swallow? Like my brain can’t make me swallow? So unless I get a drink to help it along I am unable to swallow! This is freaking me out! Please my friends, anybody gone through this? There’s way more going on for her to begin getting concerned! Sorry that was so long or even made sense? My brain is mashed potatoes right now…
Anyone on the low dose ketamine infusions for pain? I’ve scrolled and I can’t find anyone on them? I was fortunate to get into a trial and it’s for chronic pain. I also have severe depression, PTSD, and panic disorder….. But this trial is specifically for pain. Anyway, I’m only on 30mg and I just finished getting 5 infusions in a row. Is it possible I may get some uplift in my mood? Energy? The whole week all I did was sleep and today I wasn’t as sedated, but still very drowsy…. I guess I just want to know what to expect with this low dose I’m doing?
I am also in intensive therapy and groups for my issues and living with chronic pain and other chronic conditions.
Thank you if anyone understands my ramblings and concerns….
I just got done with my third day in a row of low dose ketamine infusion…. The sessions are amazing!!!!! Is it normal that I basically sleep from 2pm until the next morning! Is that the norm? According to my doctor and the nurses it’s normal to basically sleep the whole week! I just want to get the most out of this opportunity! I have painful stomach conditions… I also need it for my mental health!
So I guess is this the norm for the week?
I’m starting my low dose Ketamine infusions tomorrow morning at 7am…. I never even had a chance to go to the appointment when they talk to you about it all… what to do ? What not to do??? They expedited me on the 1 year wait list and I got in the very next week!!!! I’m mainly having them for chronic nerve pain in my stomach and I have major depression, PTSD. anxiety….
I also have a sleep disorder and if I don’t take my stimulant I cannot function or stay awake…. I’ve read to make sure that you have a good night sleep before so you are well rested? But I can’t take my wake up meds before the infusions because my blood pressure will rise and I could have a terrible experience….
I hate the unknowing but this is my last resort! I have two psychologists and a psychiatrist…. I want to make sure I get the most from these infusions! I’m not asking for any kind of medical advice obviously… I’m just scared out of my mind and I feel really alone right now….
If anyone has any suggestions?
I’m doing the low dose infusions Monday-Friday….