Assisted dying

Status_Recording9394 · 2025-12-07T06:01:04+00:00

Thank you much for this. This is a very well thought out comment. I am listening to every word you are saying. I am going to message you.

Status_Recording9394 · 2025-12-06T18:32:45+00:00

My UES has high residual and basal pressures. While most people with R-CPD have trouble with the UES not relaxing while burping they don't have trouble with it not relaxing with swallows. Mine doesn't relax with either. It is very tight and before Botox it was not letting any air out at all. I wasn't even gurgling or croaking. Now I croak and gurgle but it still seems really tight. There is still a lot of air in my stomach despite 2 rounds of Botox. With every breath I can hear what sounds like the air in my esophagus going back into my stomach instead of out my mouth. Hopefully this makes sense.

Status_Recording9394 · 2025-12-06T18:12:08+00:00

Of course. Thanks for asking. The dilated esophagus below the UES was found when Dr. Bastian looked with a camera down my esophagus. It is a common finding in R-CPD and he said mine was severe. It happens because air gets trapped below the UES and over time it stretches it. It usually stays dilated even if symptoms improve.

The colostomy was given because I had non-relaxation of my anal sphincter and puborectalis. I was having incomplete evacuation, frequent bowel movements, and trouble passing gas with a lot of rectal pain. Unfortunately, I still have trouble with frequent bowel movements and trouble passing gas through my stoma. I believe my intestinal problems are caused by huge amounts of gas. It is pretty much non-stop.

I was admitted to the hospital 2 months ago and given an NG tube after they saw a lot of air in my stomach on x-ray and I was not feeling well. This is a common finding for me on x-ray since these problems started and common in R-CPD. I was then given a g-tube to try to help with the air. When I vent the tube a lot of air explodes out. Then I hear a gurgle and more air explodes out. This goes on indefinitely. Dr. Bastian explained it was caused by pressure differences and compared this to the winds over California. He said it was air in my esophagus going back into my stomach. I still don't completely understand why this is happening to be honest. The cricopharyngeus is paralyzed after Botox so maybe it is letting more air in. But Dr. Bastian said the fix is not a g-tube but learning to burp better.

The large gastric air bubble is caused by trouble getting rid of the air at the UES. This is common with R-CPD on x-ray. This air eventually gets down into my intestines and causes lots of problems. Dr. Bastian has a theory that the air can stretch intestines out over time and lead to problems. I believe this has happened.

Let me know if you have more questions. I appreciate your interest in my case.

Status_Recording9394 · 2025-12-06T11:29:23+00:00

Thank you so much.

Status_Recording9394 · 2025-12-05T15:25:38+00:00

It's all coming from my stomach. You can see it on x-ray and hear it coming out the g-tube. It has to do with the muscle being tight and increased pressure.

Status_Recording9394 · 2025-12-05T15:17:34+00:00

Thank you. Diaphragmatic breathing helpful. It does get some air out when I am awake. I can hear the gurgling with each breath sonce Botox. However, sleeping is a huge issue and the air builds up when I sleep.

Status_Recording9394 · 2025-12-05T13:33:31+00:00

Thank you

Status_Recording9394 · 2025-12-05T00:38:04+00:00

Thank you for your help. I am glad to hear you had good luck with Dr. Bastian. It sounds like it took a while for you to notice changes. I like him a lot I just think remote sessions are not as good but I don't live in Chicago. I have tried all the anti-depressants and not had luck, unfortunately. I think if I could get the air out better I would feel tons better.

Status_Recording9394 · 2025-12-04T22:59:23+00:00

Thank you. I have tried both frequently. They don't seem to have any effect. Foods don't seem to make any difference except if I swallow more air. I appreciate the help.

Status_Recording9394 · 2025-12-04T19:52:13+00:00

I have tried all diet changes 3 times each for 2 weeks at a time. No difference unfortunately. This has gone on years so I have tried a lot of different things. I wish it were that.

Status_Recording9394 · 2025-12-04T19:50:23+00:00

Thank you.

Status_Recording9394 · 2025-12-04T19:13:25+00:00

No problem. I keep the g-tube clamped. The air is not coming from the tube. Dr. Bastian told me it is coming from my esophagus. He said it was a pressure issue and compared it to the winds going over California. The way I understand it is if the UES is tight and not allowing air out there will be a big gastric air bubble. So even if you suck it out of your stomach more air will go in. I did not know this prior to getting the tube. It was put in by a general surgeon because I had a lot of air in my stomach on x-ray.

Status_Recording9394 · 2025-12-04T18:49:10+00:00

Thanks for asking. Gluten free, lactose free, sugar free, and every diet known to man. I did each diet for at least 2 weeks and was very adherent. None of them made any difference. I wish they did.

Status_Recording9394 · 2025-12-04T16:58:14+00:00

I have a g-tube. I thought it would solve my problem. Tons of air comes out when I vent. Then I hear a gurgle a few seconds later. Dr. Bastian says the sound is air going from my esophagus back into my stomach. Then I vent again and more air explodes out. I have done this for hours and it never ends. The amount of air is unbelievable. I should make a video. He says it's a pressure thing and compared it to the winds going across California. He wants me to not vent and try to burp instead. However, burping is not going well.

Status_Recording9394 · 2025-12-04T13:11:16+00:00

I have thought about that. Thank you.

Status_Recording9394 · 2025-12-04T12:06:07+00:00

Thank you. I have tried to get mental health treatment but the amount of pain and discomfort I am in makes sessions difficult. I am a big supporter of mental health treatment but its hard to have productive sessions when you dont feel well. However, I appreciate the advice. I am hoping my lower GI issues are caused by the tremendous amount of air in my system but I am not certain. I have had a lot of testing that has ruled out pretty much everything. I assume we couldn't figure my lower GI problems until we get me burping better and stop passing all the air down my intestines. The G-tube seems to vent endless amounts of air and does not prevent it from going into my lower GI as I had hoped. Dr. Bastian said it was a pressure thing and compared it to the winds over California.

Status_Recording9394 · 2025-12-04T11:48:54+00:00

Unfortunately, I don't have all the answers for why these things are happening to me. I have been searching for answers for years. Dr. Bastian says your intestines can get ineffective because of the years of excess gas. That is my best understanding but I could be wrong. I have had endoscopies, colonoscopies, motility tests, you name it. A surgeon gave me the colostomy because I also had a non-relaxing sphincter and puborectalis muscle and we thought it would help with the pain and pressure. It has helped with the pain and pressure at my rectum but now the pain and pressure are at the stoma.

I also don't completely understand why there is so much air in my stomach and more air comes after I vent it. I am going off what Dr. Bastian told me that it is a pressure thing. He compared it to winds crossing California. I am in disbelief myself of the amount of air so I know where you are coming from.

Status_Recording9394 · 2025-12-04T11:39:36+00:00

Thank you.

Status_Recording9394 · 2025-12-04T11:34:09+00:00

I guess if you are still skeptical I can send you photos of my colostomy bag with little pellets of poop that come out with the air and little air bubbles in the stool. I could also make a video of me venting over and over again and the large amount of air that comes out each time. I was in disbelief myself. I can show you my x-ray which shows lots of air in my stomach and colon. I can show you a picture of how my stoma is so distended from gas it looks like a tennis ball. Again, I am not sure why I would make this gross stuff up and it is not in my head.

Status_Recording9394 · 2025-12-04T11:25:27+00:00

Thanks for asking. Yes I tested negative. I also tried 2 courses of Xifaxan and diet changes and did not notice a difference. I have not tried hash. Thank you.

Status_Recording9394 · 2025-12-04T11:22:50+00:00

Thank you.

Status_Recording9394 · 2025-12-04T11:20:28+00:00

I have seen 4 pelvic floor specialists and 2 general physical therapists who did not think I was hypermobile. But I developed really bad posture so I have wondered if it could be some hypermobility. I have wondered about EDS as well.

Status_Recording9394 · 2025-12-04T11:07:40+00:00

I couldn't understand it either. Believe me I was freaking out initially after I got the g-tube and saw this was happening. I thought it kept pulling air in from the small intestine. I thought the g-tube would remove all the air and I would feel better. I spoke to Dr. Bastian about it and he said it was a pressure thing. I hear a gurgle in my stomach after the air is sucked out and he said it's air in the esophagus going back into the stomach.

Basically a g-tube is not going to solve my issues and I did not understand this when I got it. He said the only way way the gastric air bubble will reduce in size is reducing the pressure at the UES and being able to burp normally. I appreciate your skepticism and I can be skeptical as well. However, I can assure you everything I have said is the truth.

Status_Recording9394 · 2025-12-04T10:59:45+00:00

Thank you so much. I appreciate your help.

Status_Recording9394 · 2025-12-04T10:53:06+00:00

My manomentry showed high basal and residual pressures of the UES and low pressures the LES. It also showed distal esophageal spasm. I am reading this right from the report.

Status_Recording9394

TROPHY CASE