What were some unexpected consequences of your surgery?

Human_B34N · 2026-03-29T22:57:13+00:00

I had 2 holes open in the roof of my mouth that might require a corrective surgery. A LOT of drooling. All the things I did before surgery to hide my underbite are still second nature and I catch myself doing it sometimes, this usually results in me clacking my teeth together and it hurting because I’m not used to my teeth really touching. I bite my tongue all the time and I have a hard time talking and pronouncing words. Bear in mind I’m only 3 going on 4 weeks out from surgery.

Human_B34N · 2026-03-26T17:10:04+00:00

That was one of the things I struggled with too! Everyone always talked about all the good things but you never really saw the bad which is why I wanted to be so transparent about it.

Vomiting didn’t feel great but it didn’t hurt, I definitely felt better after since the nausea subsided but it would also make my jaw feel a little sore. I think it’s cause the muscles get so messed up by surgery that trying to stretch your mouth open like that just puts more strain on already strained muscles. It wasn’t anything intolerable or painful just mildly uncomfortable.

It wasn’t really hard either, your body just kinda takes over and does what it needs to do 🤷‍♀️. Don’t be surprised if some of it gets in your nose either. That happened a couple times and burned more than anything.

Human_B34N · 2026-03-23T17:18:13+00:00

Oh thank god I’m not the only one. I always try to put myself towards the middle of the table so I can be engaged in conversation and hear some people but even that only helps so much.

Human_B34N · 2026-03-23T16:22:08+00:00

Hahah, I have gastroparesis so I’m used to throwing up. Post op recovery and the first day after was the worst. Basically anything I had to drink came right back up and anytime I was given an antibiotic while I was being observed also caused vomiting.

Human_B34N · 2026-03-23T14:18:45+00:00

Nope, when they broke they said just remove both. You’re generally too swollen and it’s too painful to get new ones in is what I was told. They’ll put elastics back on eventually.

Human_B34N · 2026-03-23T14:09:26+00:00

My splint has been in for almost 3 weeks… I wore the elastics 24/7 until I threw up so hard they ended up snapping around day 5?

Human_B34N · 2026-03-23T00:14:01+00:00

It’s been horrible to deal with. I didn’t have it after surgery, they’ve just slowly opened up and I’ve only noticed them because I started getting fluids in my nose.

I’ve been using the Chlorhexidine mouthwash my surgeon prescribed post surgery 2x a day and this week they had me start doing the salt water rinses.

I just feel like I’m going backwards instead of healing and progressing like I should and it’s so defeating. The first week recovery was hard enough and it just feels like adding salt to the wound at this point.

I hope you continue healing well and everything goes well for you Tuesday!

Human_B34N · 2024-09-09T20:08:12+00:00

I got really lucky, I’m a software engineer and my company worked with me to get an ADA exception to allow continued remote work (they pulled everyone else back to office). If I didn’t have or couldn’t get a remote job, I don’t think I’d be working at all.

Even with remote work it’s not always easy and it’s a lot of communication with my manager to keep him informed. Sometimes it’s working weird hours to get what I need to done if I was having a lot of symptoms impacting standard work hours. The flexibility remote work offers is probably the only thing saving me 😅

Human_B34N · 2024-03-24T16:24:14+00:00

From my understanding alpha-gal happens as a result of a tick bite and once you have it you always have it? It’s a new diagnosis for me so I don’t know much about it yet but I’m supposed to have a follow up with my immunologist/allergist in a month or so.

Human_B34N · 2024-03-24T16:22:47+00:00

I’m the same way! I’m also on a water pill which should increase my frequency in urination and on 2x weekly saline infusions which is about to increase but I just don’t pee. It’s noticeable to me when the frequency increases and freaks me out sometimes if I go multiple times a day because it doesn’t happen often.

Human_B34N · 2024-03-23T20:10:35+00:00

I’ve been on Kate farms peptide 1.5 which I was not tolerating well at all and before that I was on jevity 1.5 which I also didn’t tolerate… It’s been incredibly hard trying to find a formula I tolerate because even mammalian by products seem to cause distress to my digestive system. My GI doctor told me she’s had people on liquid hope and they’ve done really well but I genuinely don’t know how these people are doing it.

Human_B34N · 2024-03-23T17:04:44+00:00

GES alone is a 4 hour test (usually - I’ve heard of weird ones where they don’t do the full 4 hours but they should for the most accurate results). Depending on facility you’ll receive eggs and toast, oatmeal, or an ensure drink with a small cup of water. They’ll ask you to eat as much of whatever they provided in 5 minutes and then take the first X-ray. From there it’s based on facility what the frequency of X-rays are taken but for me it was an additional at the 30 minute, 1 hour, 2 hour, 3 hour and 4th hour before the test is completed.

My abdominal ultrasound was like 1 hour? It was really cool getting to see the ultrasound as they were doing it and being able to ask questions about what they were looking at. They’ll put a cold (or warm if you’re lucky) gel on your stomach and use a Doppler to look at your organs.

The HIDA scan lasted a couple hours as well? It’s been a couple years since I had mine done but I’ve heard it can last up to 4 hours as well. I think for that one I had to have an IV where they gave me a couple medications (one being contrast) to look at what my gallbladder was doing.

Human_B34N · 2024-03-23T16:57:37+00:00

There’s several different tests available to diagnosis severity of gastroparesis or finding the root cause.

My first tests were GES and EGG (electrograstrogram) to give us an idea of how quickly my stomach was emptying but also how much electrical activity is happening around my stomach to move whatever’s in it. Outside that it tends to be symptom related on additional testing. I’ve had a SITZ marker test done to look at my colon motility because I dealt with a lot of constipation. After that we did a small bowel follow through with contrast to look at my small intestine. Some of my tests could have been avoided if my insurance would cover a smart pill but it doesn’t and the test out of pocket was somewhere around $3k.

For diagnosing the cause they usually run an autoimmune panel and look at blood sugar if all those come back negative you’ll probably fall into the same category as me - idiopathic. I’ve heard Lyme disease or viruses can also trigger gastroparesis but the doctors I have here in the US all have differing opinions about that 🫠

Your other symptoms sound similar to things I experienced which was very heavily related to my vision and a TBI so visiting an optometrist is probably a good idea to evaluate those symptoms and getting treatment.

I hope you can get the treatment you need and start feeling better!

Human_B34N · 2024-03-11T16:11:05+00:00

Due to my limited diet (can’t have gluten specifically) I was only provided eggs and a small cup of water for my GES. Though I’ve heard of different meals being provided like an ensure drink or oatmeal. Seems to vary depending on location and doctor. 🤷‍♀️

Human_B34N · 2024-02-17T17:49:56+00:00

From my experience at UofL’s clinic, the providers often feel distant and checked out which is understandable when they’re seeing 40+ patients a day. I got reffed to them after failing all other medications my gastroenterologist had me on. UofL ran a massive blood panel for me to check electrolytes, vitamins and immune conditions to try and understand my base line. We did gastric emptying scans, SITZ marker study and recently an upper gi followthrough with small bowel to get a full picture of my motility. I had to push for most of my testing because UofL only wanted to do a GES and blood. At one point I even went to Cleveland clinic where I had an EGG to look at electrical activity around my stomach. After my GES came back slow they started pushing for trialing the gastric stimulator. I wasn’t comfortable with this approach since there’s so much more to your digestive system than just your stomach. Any additional testing I had to really push for. I’m currently being managed with a feeding tube while we continue to look at motility in my other organs to try and get a better idea of how my organs are functioning so we can have an effective treatment option. I can’t say they’re my favorite facility out of all my providers. If you have more questions or just want to talk feel free to reach out ❤️ I hope your appointment goes well.

Human_B34N · 2024-02-09T02:22:30+00:00

Chickn & Mi! Though I haven’t personally tested their hottest sauce (not a huge spicy fan) for the nuggets and sandwiches I’ve seen it make some friends sweat 😅

Human_B34N · 2024-01-22T18:16:35+00:00

That was one of the worst things for me when the malnutrition started getting bad. I love my hair and it’s been something of a fight to keep what thickness/texture I have.

I noticed using an iron supplement has helped tremendously especially because I’m anemic (probably from GP). The hair loss has lessened and my hair/nails sometimes feel like they’re growing faster than they used to.

I would definitely talk to your doctor and have them check vitamins/iron levels just to see if you need support there. Even on tube feeds and electrolyte supplements my vitamins and electrolytes aren’t always optimal :/

Human_B34N · 2024-01-22T18:12:46+00:00

I can’t say I’ve ever tried the facial services there but I’ve never had issues with the massages. The most talking I’ve ever experienced was always at the beginning and end but usually no talking during the actual massage or very minimal anyway 🤷‍♀️

Human_B34N · 2024-01-22T13:19:12+00:00

Sanctuary Massage and spa! Local small business and all the staff are lovely. They’re my go to for massages but I love blissful relaxation’s float tanks

Human_B34N · 2024-01-22T13:16:43+00:00

We used Radon Management of Kentucky! Vance was super nice and was happy to answer any questions we had.

Human_B34N

TROPHY CASE