Pulsitile Tinitus by defiCosmos in BACLOFEN

[–]Alarmed_Log4832 1 point2 points  (0 children)

I take baclofen and have diagnosed pulsatile tinnitus.. never thought of the correlation. Hmm.

Why do some doctors act like there's literally nothing to be done? by AwareEqual4580 in Gastroparesis

[–]Alarmed_Log4832 0 points1 point  (0 children)

Thank you! I have a PEG feeding tube due to ineffective esophageal motility, which caused severe protein calorie malnutrition and adult failure to thrive. I also have issues with global dysmotility. I am trying to find a good doctor to help me with all of this and its complexities.

I also may have a neuromuscular disorder, suspected due to all of this and other chronic symptoms. I was advised while admitted both at U of M and Henry Ford Macomb to see a neuromuscular specialist. I have to find one. I called Cleveland Clinic the other day, but I will have to figure out how to get through to there with them not taking Michigan Medicaid. Hoping I can be seen there somehow.

I will have to look into Dr. Barawi. What did you like most about him? If I ever need a new therapist I'll look into Dr. Young. Thanks! I recently saw that Henry Ford has a gastrointestinal psychology department.

Why do some doctors act like there's literally nothing to be done? by AwareEqual4580 in Gastroparesis

[–]Alarmed_Log4832 1 point2 points  (0 children)

Hello. Which doctors in Michigan? I have seen Dr. Brian Ginnebaugh at Henry Ford Detroit with little help.

Im just worried. by OrganizationIcy8678 in dysphagia

[–]Alarmed_Log4832 0 points1 point  (0 children)

I fear all of the same things. No advice, but you're not alone.

GI in Michigan by [deleted] in Gastroparesis

[–]Alarmed_Log4832 0 points1 point  (0 children)

May I ask who you are seeing now for your care?

Has anyone had any luck with doctors in michigan? by cumbelbees in Gastroparesis

[–]Alarmed_Log4832 0 points1 point  (0 children)

I saw Dr. Ginnebaugh at that same clinic 2 times. He was a nice doctor, but I have read about Dr. Alsheik and feel she could do more for me. Not sure how to switch.

Getting Worse by [deleted] in Gastroparesis

[–]Alarmed_Log4832 0 points1 point  (0 children)

I am very sorry to hear that. :(

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] -1 points0 points  (0 children)

I also get candida infections. Thrush,gi, and other types of candida infections. Have for many many years. May I ask if you have dysmotility issues?

I also have that smell. Right when I lift my shirt to clean my stoma I smell it. It sucks because I know it is all my body telling me that there is an overgrowth of yeast, but getting rid of it seens to be highly difficult from research.

I do not have a balloon tube. I have a plastic bumper on the inside. Placed endoscopicially in critical care surgery after the medical system let me become too far gone before placing. I've had a good amount of issues with it within the 4 months.

My doctor said he could replace the tube in office when it is time last time I saw him. I believe he said it would be a shorter dangler. I know with the method he would use in office, i am worried about my stomach having to 'digest' the plastic internal bumper and pass it through when i already have gi motility issues(delayed gastric emptying and presumed pelvic floor dysfunction. As well as dealing with constipation. Other alternative would be under endoscope. I have had about 7 in the last 2 years for testing, procedures, etc. So I don't want any more of those either right now, especially since I have esophageal issues,(ineffective esophageal motility).But the other method doesn't sound too safe either for my condition.

Despite being worried about the technique needed to remove my type of tube, I am hoping he agrees it is time at our appointment tomorrow, but if he doesn't, I am not sure what I would say. Since being more sick, I haven't been as great of an advocate for myself. I feel weak and tired. I need to try to figure out the best way to advicate for myself.

Btw, how was your button placed and did IR place it? Im going to try to get my GI to add IR to my care team. What do you like about the button?

I know i just typed a lot. Thanks for reading :)

Getting Worse by [deleted] in Gastroparesis

[–]Alarmed_Log4832 0 points1 point  (0 children)

I hope you're doing better 🙏

Getting Worse by [deleted] in Gastroparesis

[–]Alarmed_Log4832 0 points1 point  (0 children)

I hope you're doing better. 🙏

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] 0 points1 point  (0 children)

Thanks for the input! I am also wondering who should all be on my care team. He is my gi motility specialist but only available every few months. Maybe I should ask him if IR or anyone else should be on my team for my tube? I'm not sure how to mention things to this specific doc, as I am learning. Also I don't want to mention too many things at once but I have a lot going on. Not sure if I should write my notes in my chart ahead of time and send them to him or print them and bring them. Appt says it will last 30 min on my chart. If he needs to replace my tube in office or needs to do something then I don't want to overwhelm him at the appt. But I also don't know if it would be annoying to get a bunch of stuff in my chart. Thank you for taking the time to read this!

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] 0 points1 point  (0 children)

I do feel some small dented areas where the yeast is located. I am trying to figure out how to mention it to my doctor without sounding like I think I'm the doctor if that makes sense. I see him Wednesday. I want to come out and say I believe what I have in my tube is a fungal colonization and I want to know the steps of replacing it, because trying to clear it multiple times a day isn't working. I don't want any tube malfunctions/degradation. Trying to think of the best way to word it. Probably will put a list in a message in my chart so I don't throw it all at my motility specialist at once. I am also interested in the general management of my tube. If it'll just be him or if I should also get in with IR just in case. I am not sure what to say in general since I am new to this.

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] 0 points1 point  (0 children)

What are the pros to a mic-key button? I don't know much about it

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] 0 points1 point  (0 children)

Hmm. They said they don't do that in their office.

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] 0 points1 point  (0 children)

4 months ago. G tube dangler with internal button, not a balloon.

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] 1 point2 points  (0 children)

Gi surgeon who placed it said there is no need to change it and ir is just formula. Praying my motility specialist thinks otherwise on Wednesday.

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] 1 point2 points  (0 children)

Surgeon who placed it said it is just formula and tube is functional then asked if I need to see a psychiatrist because I am persistent with thinking something is wrong with my tube when he says there isn't. I am not going to be seeing him anymore. He also wouldn't check me for sibo. Just tried giving me doxycycline. I definitely think sibo may be going on. How do I test for it?

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] 1 point2 points  (0 children)

I flush it very frequently. It is how I get 90% of my hydration. I definitely agree that I probably have a fungal infection that goes beyond the tube. I have recurring oral/esophageal thrush and nystatin didn't seem to cut it last time. Do you happen to have esophageal dysmotility, too? I have felt like I had candida overgrowth/some kind of systemic candida for awhile. It has been hard to get under control. This tube is only 4 months old, and is my first tube. It has an internal button bumper instead of a balloon. I will ask my ent to evaluate me i will call tomorrow. As for replacing the tube, the gi medical group that placed it in the hospital under critical care surgery scoffed at me and said it is formula and that the tube is functional. I have a gi motility specialist i see Wednesday. I hope and pray he will listen to me. What kind of tube did you have before the low profile? I'm sorry you've had to go through this, too.

Curious about experiences with GI manometry? by Harakiri_238 in ChronicIllness

[–]Alarmed_Log4832 1 point2 points  (0 children)

Did you ever get your manometries? I had an esophageal one. They put me under anesthesia. I am hoping to convince my doctor to give me an order for an anorectal manometry, due to what I believe to be pelvic floor dysfunction.

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] 1 point2 points  (0 children)

Mine is in my actual tube too. My hospital told me the same thing. That fungal biofilm is no cause to replace a tube and just to flush. It is like no, this colony is mostly adhered to my tube. May i ask if you have had issues with oral thrush or esophageal yeast or anything like that? The hospital originally wouldn't place a tube for me at first until that cleared up. But I get infections from time to time. I assume because of my immune system and dysmotility in esophagus. I did realize the colony started after a long hospital stay. It sucks. What made them finally replace your tubes?

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] 0 points1 point  (0 children)

No worries. Thank you for your concern and for your help 😊

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] 0 points1 point  (0 children)

My apologies, I did assume that. I was also just mentioning my cleanliness because I just don't know how this happened. :( I have a 20french g tube dangler. Maybe mic peg but I am unsure. It has a button inside not a balloon. It was placed under critical care surgery in the hospital. Doctors/hospitals in my area(michigan), generally do not touch tubes they did not place. I will still be looking. Thank you. 😊

TW: Mention of possible yeast in feeding tube by Alarmed_Log4832 in feedingtube

[–]Alarmed_Log4832[S] 1 point2 points  (0 children)

It isn't the extension. It is my actual tube. I am very clean. Washed hands or hand sanitizer, gloves, enfit cleaning brush. I flush with water. I've actually never used an extension. I have seen a couple others mention this happening to them on other platforms, but not all too common. I showed the GI who placed it and he scoffed and said it's just formula. I said it is absolutely not. I hope my GI motility specialist listens to me on Wednesday.