GI advice needed

Hello everyone,
I’m at Northwestern right now. I have a midline and an NJ tube. This is my second NJ tube. I’m not gaining weight on my feeding tube… My small bowel followthrough was normal. The primary care team, not GI said that my problems were most likely intermitent. How is it that I could have an abnormal gastric emptying test and a normal small bowel followthrough?
Also, I have EDS, and therefore, my vein access is crap. I have this midline, but they only last for 30 days. They said I could get the line replaced every 30 days. I told them this would cause my veins to scar more. They said I was to young for a central line and a permanent tube and that the risk of infection outweighed the benefits. I’m just confused. They also said that within a month, they hoped I wouldn’t need tube feedings anymore. I’ve tried all the meds I can try for GP and all the surgeries are considered experimental. My insurance won’t pay for them. I was 88 pounds when I came in here on Wednesday, and now I’m 85.3 pounds. I don’t feel like I’m being listened to. Any advice?

gifts from friends and medical stuff

So, we got a mini fridge from our friend Carol. We also got a connetics sand kit and a magnetic building kit from our friend Seneca. These were both surprises. Our friend Carol got us the mini fridge because it’s so hot in our room because we don’t have air conditioning in this part of our apartment. We can store our formula and IV fluids in there as well as our ice packs because this little fridge has a freezer compartment. Yay!!! Our nurse is coming tomorrow to do our IV infusion. Hope our blood pressure responds better tomorrow than it did the last time. The last time we did IV fluid infusions, our blood pressure was only 90/60 after 2 liters of fluids. Have a good night everyone!

ER again!

So, last night, we were at the ER again for fluids. Ugh!!! I just wish insurance would cover the IV fluids. Our blood pressure was 81/36 when we called the EMT’s. When they got there, it was 81/52. The EMT said that was normal for a person my size. Like, what? Just wow!! We got fluids, and the nurse practitioner was really nice. She looked at our labs, and she said we weren’t very far off from needing an iron infusion. Like, hmmm. We’ve been on tube feeding now for a little over a month. We should be getting iron, but she said apparently there’s a malabsorbtion issue going on. She also said our folate was low. Everything else was ok though. The nurse practitioner said that she has seen more people around here with EDS lately than ever before. Our GI did an ANA test to check for autoimmune stuff, and we are waiting on that to come back.

conversation with our dietitian

So, we had a conversation with our dietitian yesterday. We asked her if our POTS doctor had contacted her, and she said no. I told her that he said that I wasn’t getting enough calories or fluids. She told me to leave it to my POTS specialist and she basically said that she wanted to leave it up to the doctor. I’m just concerned about her unwillingness to learn about our condition!! It’s like it makes her uncomfortable to work with a patient as complex as me. It makes me kinda sad.

Medical update on us

So, our POTS doctor is ordering home IV fluid infusions once or twice a week and then they will re-evaluate after 4 weeks to see if this can be long-term. This is good news as my dietitian isn’t giving me enough fluids with my feeds.
I also spoke to my GI doctor today, and he said that he was going to let the motility clinic decide on the GJ feeding tube.

updates on feeding tube

So, after our dietitian said that we were moving to 24 hour feeds, she then rescended her decision after talking to someone, and we are now going to be getting even fewer calories than before this decision!!! She’s going to have us on 988 calories per day for a week!!! like what the heck? That’s a starvation diet!!! Like, how does she expect us to gain weight on that!!!
Our GI doctor is seeing us next Friday, and we are seeing someone from the motility clinic on June 30th through telehealth. We are just so frustrated by our dietitian and the GI doctor’s lack of a plan for the pformanent GJ tube.

An email I sent Lily

Where did you get your statistics that show that imagery exercises will improve my gastroparesis by 5 to 10 percent? Sounds far-fetched to me. Imagery was a big part of our trauma and I’m surprised you didn’t ask about that before suggesting it to us. We are not comfortable with it at all! and also, if we gain weight, it’s because of our feeding tube, not because of some imagery exercises. I’m sorry, but this just sounds ludacris to us.

NJ tube woes

So, I was in physical therapy today, and my NJ tube bridle was rubbing against my nose so much that it made it raw and bleed. They sent me to the ER, and they gave me Litacaine cream. They also called my GI to ask about the plan because he said that they would need to put in the GJ tube after 4 weeks because the NJ would start to rub me raw, and it’s been two weeks and it’s already starting to do that a lot. He made no mention of getting the GJ tube, but said that if I didn’t gain weight in the next two weeks, he was referring me to the motility clinic at Northwestern in Chicago and pulling this NJ tube. I’m just totally confused as to how I’m supposed to get nutrition and the ER even said they didn’t think my GI even knew what the plan was. I’m 86 pounds and haven’t gained anything since getting this NJ placed two weeks ago. Does anyone have any advice? It could be months before I get in to this metility clinic. I see my GI again on the 26th of June at which point, he said he would pull this tube. My dietitian only has me on 840 calories a day right now, and insurance is giving us issues to get up to 1000 calories a day because they have already paid for a certain concentration of my formula.

From Myr My Thoughts

How do I reconcile the fact that we will be tube dependent for the rest of our lives? How do I untangle the chronic illness that we live with from the memories of trauma that I have from my past? I’m struggling to see how my illness is any different from the trauma that happened to us. How do I grieve the life we had before the tube? I just so badly want to go get some ice cream but I know it will make us sick. Do you have any advice for accepting this new reality?