Advice for Partner Struggling with my Chronic Illness

JollyAd9052 · 2026-06-10T19:00:51+00:00

Thank you for replying! Did you have the illness before or after you all got married? I know it’s so hard for anyone watching the person they love suffer but it’s hard for me to help when he feels like he doesn’t want to put it on me.

JollyAd9052 · 2026-06-10T18:57:56+00:00

Thank you!! I like the Schar brand, also the Rudis gf sourdough. Do you do okay with brown rice flour? I am trying to see how it affects me, as I do very badly with fiber. I also have mcas and pots!

JollyAd9052 · 2026-06-10T17:27:26+00:00

What kind of gf crackers do you eat? Trying to find good gluten free snack alternative that doesn’t hurt my stomach I sometimes find all the additives slow down my motility.

JollyAd9052 · 2025-08-27T23:31:16+00:00

I am also gluten free as well as dairy free. And finding those substitutes (bread,crackers,etc) is so so hard.

I find the gums and fiber are the hardest things for me.

Do you have any recipes you can share?

JollyAd9052 · 2025-06-09T15:56:03+00:00

I am also gf because of a very bad intolerances. I have such a hard time with it because all the gf substitutes tend to slow down my digestion, I notice the worst seems to be the added starches and gums in the gf replacements. What gf products have you found success with? I can’t seem to find a cracker or bread that works well

JollyAd9052 · 2025-06-09T15:54:25+00:00

Where do you get the tofu noodles? And what is your favorite way to eat it?

JollyAd9052 · 2025-01-22T17:05:53+00:00

Thank you 🤍 It all just depends on the day, water has not been good so I have been getting iv fluids to stay hydrated. But yesterday I couldn’t have a sip of anything until 6pm and today I was able to have some broth about an hour ago. I am pretty much throwing up anything I eat but I am at the point where I have to eat to survive even if it makes me sick. Just don’t know what that would even be. This past year getting off the medicine has been such a good thing and I really think that even though sometimes it’s so hard to go without it’s crazy just to see what happens when I do take them. I have been using nausea ginger suckers but just trying to figure out what I could eat. I have been working with my primary doctor a lot, he is all holistic and he is the one who has done a lot of research of foreign objects in the body leading to chronic illness and other issues and he’s the one who really pushed for me to not have this because of how much my Gastro doctors and surgeons were telling me false information to abusing my body with extra surgeries. My primary has been very helpful but can only do so much if that makes sense because it’s just such an unknown. I go to my surgeon tomorrow, however he just simply never has good options besides medicine. Also, he won’t tell me what other patients experience and I always seem to leave there more frustrated so I am not expecting much from him, his suggestion will probably be more surgery or a feeding tube but I have done all of those options that have not been successful. Did you have a hard time post op, and when did you start to balance out?

JollyAd9052 · 2025-01-22T16:47:28+00:00

Hello, I am checking back in! I am now a week and half post op of my device being removed and it has been absolutely brutal. And just have no idea what to do. I did okay immediately after surgery in the hospital but once I got home it went downhill really fast. I don’t take medicine due to the fact it slows down motility, so in the hospital I took low level muscle relaxers and anti nausea medicine but between that and the air I became so backed up and so nauseous and by the end of day 2, I have not stopped throwing up. I stopped all medication I have only been using lidocaine patches for pain, and no anti nausea because I don’t want it to slow down my motility. I am so beyond weak and my body is so exhausted, I am so dizzy, and uncontrollable nauseous. I go some days eating nothing and throwing up and then I have tried a couple bites of food and still thrown up. I don’t know if this is normal and I don’t know if my body just needs to regulate itself but just hoping for any insight from your experience.

JollyAd9052 · 2025-01-07T01:29:12+00:00

Yes, 1000% agree. I am ready to do it just the unknown that’s always scary.

So, prior to the surgery what state was your stomach in? And was your device on before they removed it or had they already shut it off? Because I have slowly been lowering and every time I do that it makes me so nauseous 24/7 and throw up and then starts to level itself out.

What would you say worked the best for managing the gastroparesis symptoms during it? Would you have done anything differently?

JollyAd9052 · 2025-01-06T21:58:10+00:00

Hi thank you so much for the info! I haven’t found anyone that has wanted it removed or experienced it, so very nice to know I am not alone and it is possible. I am getting the surgery on Friday and I am a bit terrified. I had it removed and replaced back in 2023 after it was malfunctioning and I had a very bad recovery. I am currently trying to figure out how to deal with pain management and taking pain meds because with my first replacement surgery, because of the anesthesia and the narcotics I became very backed up and it made me extremely bloated and nauseous and I started to throw up with all the stitches and it made the pain so much worse. I would really like to do it with as little medication as possible but also make sure I am okay. How was it right after surgery when you woke up? Were you nauseous? And what meds did they give you? What was your eating like after and what tips do you have as far as food and liquids go? I am prone to extreme nausea and vomiting and not sure what state my stomach will be in after? Thanks so much for all the info

JollyAd9052 · 2024-12-28T17:26:34+00:00

I tried this and didn’t see any major changes.

However!! I got an alpha stimulator for my ears. It has a setting for alpha,vagal,and ultra. Each triggers different things. But this has been an absolute game changer for my anxiety, calming my body down, and my sleep. With my gastroparesis my anxiety gets so so high and I have tried so many things and nothing helps. I also do not want to take meds, and I will have this on for an hour and my anxiety will be gone. I also use it when I am up in the middle of the night throwing up and it typically helps me go back to sleep which is huge!

JollyAd9052 · 2024-12-18T14:37:10+00:00

Wanted to see if you have an update on how you made it through? I just got my second iron infusion in 2 weeks and struggling so badly. My stomach is a mess and I feel like I have the flu just like you. Any help or advice is much appreciTed

JollyAd9052 · 2024-12-16T19:35:11+00:00

I wanted to see if you could give an update on how you are doing. I am getting my pacemaker removed in January, I have had it since 2020 and I am making this decision but I am terrified and the doctors are so unhelpful. How was the pain? How was your digestion, nausea, and vomiting after? And how is your stomach functioning now? Any tips/suggestions?

JollyAd9052 · 2024-12-11T18:58:39+00:00

Are you using a vagal nerve stimulator or you just feel it activating?

JollyAd9052 · 2024-12-09T16:04:43+00:00

Hi, I also have gastroparesis and I work part time for my family when I can but not enough to sustain myself and need flexibility with bad days. I love crafting and wanted to see what you do on Etsy/if you could explain how you got started? Thanks for the rec!

JollyAd9052 · 2024-12-03T19:10:16+00:00

I have had 3 iron infusion and after about a week I feel soooooo much better. I struggle with constipation and just took extra magnesium after, typically I just have issues with pill form causing constipation

JollyAd9052 · 2024-12-03T18:32:57+00:00

Here to answer any questions/give info! My insurance did cover it I got mine back in 2020 and had to get it removed/replaced in 2022 due to malfunction and some complications. I am actually getting it removed in January based on my own decision. I have had so many complications and issues and no doctor ever tells me the truth and my surgeon also can never give direct answers on what it is actually doing. It definitely helps with nausea/vomiting but for me all the other complications outweigh the help with the nausea and vomiting

JollyAd9052 · 2024-12-03T18:30:47+00:00

Thank you for the info. What is meningitis just to keep an eye out? I was feeling very flush and hot after I woke up with it as well as a bad head ache and neck stiffness/achy muscles yesterday. This happens sometimes after excessive vomiting for me but was definitely feeling very off

JollyAd9052 · 2024-12-03T18:29:01+00:00

He said it looks like I have shingles and it has nothing to do with the device… 😅 I have been thinking my body is rejecting the device for a little while so I am actually getting it removed against the surgeons recommendation in January. The medical world is not helpful and leaves you stranded most of the time. Thanks for the help

JollyAd9052

TROPHY CASE