Help wanted (Score so far related)

[IWMP]

Thank you so much, Weaps!

Oh so the walker. He's got the cane rigged up with a loop of duct tape. Duct tape fixes everything. I put a clear "basket" thing on the front bar with zip ties so he can carry stuff around (I can't believe I'm actually disclosing this it's embarassing but what isn't here lately.) like his phone or tablet. On the other side there's a cloth shopping bag with lemons on it because he goes on short shopping trips. And there's another container thing lashed on with zip ties (I think? Maybe duct tape.) so he can use it like a little personal trash can or fit a cup in there. Believe it or not, with all that on it he can still collapse it to take in the car.

I'm sure there's accessories that we never bothered to search online for so we made do with what we had.

WHO are we?

I have NO idea how I went back into NSR. It'd been a while since I did the valsalva maneuver...I think? I dunno. I don't really know when the last attempt was before we left. All I know is that it did and I knew it instantly...because you know it. It doesn't slow down, it just kicks back into NSR. You can't miss it.

I feel SO stupid. I'm getting used to it.

I gave myself grace today and worked on a new paper craft project I've been wanting to try. Did get some house things done and took out the trash. Offered to pull out the neighbor's trash because her hubs who was helping us, had surgery. But mainly just made it a self care day and skipped my daily weight checks I'm documenting here, too. I just needed to step away from it all.

Just don’t do like a patient my fellow nurse coworker had. He had a urinary catheter with a regular size collection bag. He decided to self-convert it to a leg bag (smaller in size), so he put about 100 staples in the bag. Can I get a UTI

I’m always amazed at the creativity of patients, especially the men. CPAP masks are another one. All kinds of duct tape, etc., and cess pool humidifier chambers. << Just get new supplies every 6 months.

If you buy out of pocket, those accessories can be expensive for the cheap materials that they are made of.

Praying you will have a refreshing break from these issues.

yikes. My relative has to have catheters (X2 in two different places) sometimes. Once for years, about 5 years and he was constantly getting infections and twisting and then he had lots of stones in his bladder. Like an unbelievable amount and he needed an op to remove the stones. Currently he is bagless but he isn't far off needed it again. (He has lichen sclerosis and the entire length of his urethra had scarred closed and the waiting list for surgery was incredibly long because only one surgeon did that surgery). I think infections during catheterization look to be far worse than UTI infections. He was in agony.

[IWMP]

Jersey Girl that sounds like a crazy night. I hope the food increase works but I do thing it sounds like that might be a thing that feels worse before it feels better.

With the water/hydration... It's actually true... Water can cause dehydration if you don't have enough salts. Because of osmosis, you want the water to go in but if there is more salts in your bowel than your blood you can drink water all day long and it's just coming out when you pee. I have this problem because of EDS so I actually need to have salt tablets, hydration drinks and sometimes straight up shots of salt.

One day I felt like I was going to pass out. I just knew I needed salt. So ate about half a teaspoon of salt and drank loads of water and the relief was crazy. I immediately felt human again. If your sodium is getting low, it might be worth looking into hydration drinks.

[msnobody]

Just don’t do like a patient my fellow nurse coworker had. He had a urinary catheter with a regular size collection bag. He decided to self-convert it to a leg bag (smaller in size), so he put about 100 staples in the bag. Can I get a UTI

I’m always amazed at the creativity of patients, especially the men. CPAP masks are another one. All kinds of duct tape, etc., and cess pool humidifier chambers. << Just get new supplies every 6 months.

If you buy out of pocket, those accessories can be expensive for the cheap materials that they are made of.

Praying you will have a refreshing break from these issues.

yikes. My relative has to have catheters (X2 in two different places) sometimes. Once for years, about 5 years and he was constantly getting infections and twisting and then he had lots of stones in his bladder. Like an unbelievable amount and he needed an op to remove the stones. Currently he is bagless but he isn't far off needed it again. (He has lichen sclerosis and the entire length of his urethra had scarred closed and the waiting list for surgery was incredibly long because only one surgeon did that surgery). I think infections during catheterization look to be far worse than UTI infections. He was in agony.

Poor guy. Not something any of us would want to have.

[Jersey Girl]

Grilled chicken, broccoli florets no stems, pasta tossed with olive oil and dried basil from my garden.

Done. Decided to omit parm until tomorrow so if something doesn't do well I can know it's the pasta.

ETA: Went well!

[Jersey Girl]

Jersey Girl that sounds like a crazy night. I hope the food increase works but I do thing it sounds like that might be a thing that feels worse before it feels better.

With the water/hydration... It's actually true... Water can cause dehydration if you don't have enough salts. Because of osmosis, you want the water to go in but if there is more salts in your bowel than your blood you can drink water all day long and it's just coming out when you pee. I have this problem because of EDS so I actually need to have salt tablets, hydration drinks and sometimes straight up shots of salt.

One day I felt like I was going to pass out. I just knew I needed salt. So ate about half a teaspoon of salt and drank loads of water and the relief was crazy. I immediately felt human again. If your sodium is getting low, it might be worth looking into hydration drinks.

What you said about hydration drinks was a good reminder for me! Yes, I do have pedialyte packets I can start using again! They're made for both children and adults. Don't know if you have that over there but they are flavored and you can mix them in a glass of water. They also have bottles of it, but I keep the packets (sachets?) because they are more convenient for me. I even keep them in my car.

Thank you so much for mentioning that! <3

[IWMP]

Jersey Girl that sounds like a crazy night. I hope the food increase works but I do thing it sounds like that might be a thing that feels worse before it feels better.

With the water/hydration... It's actually true... Water can cause dehydration if you don't have enough salts. Because of osmosis, you want the water to go in but if there is more salts in your bowel than your blood you can drink water all day long and it's just coming out when you pee. I have this problem because of EDS so I actually need to have salt tablets, hydration drinks and sometimes straight up shots of salt.

One day I felt like I was going to pass out. I just knew I needed salt. So ate about half a teaspoon of salt and drank loads of water and the relief was crazy. I immediately felt human again. If your sodium is getting low, it might be worth looking into hydration drinks.

What you said about hydration drinks was a good reminder for me! Yes, I do have pedialyte packets I can start using again! They're made for both children and adults. Don't know if you have that over there but they are flavored and you can mix them in a glass of water. They also have bottles of it, but I keep the packets (sachets?) because they are more convenient for me. I even keep them in my car.

Thank you so much for mentioning that! <3

We have that. We call it diarolite (sp?). I think they taste awful here so I like Powerade hydration drinks.

Pasta sounds delicious, glad it was ok xx

[Jersey Girl]

What you said about hydration drinks was a good reminder for me! Yes, I do have pedialyte packets I can start using again! They're made for both children and adults. Don't know if you have that over there but they are flavored and you can mix them in a glass of water. They also have bottles of it, but I keep the packets (sachets?) because they are more convenient for me. I even keep them in my car.

Thank you so much for mentioning that! <3

We have that. We call it diarolite (sp?). I think they taste awful here so I like Powerade hydration drinks.

Pasta sounds delicious, glad it was ok xx

Yes that sounds just like it. It helps to keep electrolytes in balance.

[Jersey Girl]

Moving this forward again. Weight checks seem pretty good lately.

All that stuff at the bottom will get weeded out and put in order for an appointment on Tuesday.

Regrouping on the daily weight checks. The Jan 3rd check is wrong. When I stepped on the scale today it threw an error code. Replaced the batteries and now I'm right in the ballpark of gaining. I'm going to keep this list rolling forward so when I go on the 28th I've got it documented. Going to put a previous weight check from the last follow up and star weight checks on the doctor's scale. Don't let it scare you, folks. I dashed out of the house on basically no breakfast and cup of tea, no water.

Dec 27: 78*
Jan 2: 86
Jan 3: 82 (this is probably wrong)
Jan 4: 85.4
Jan 5: 84
Jan 6: 84.5
Jan 7: 83.4
Jan 8: Skip*
Jan 9: 84.8
Jan10: 85.4
Jan11: 84.0
Jan12:
Jan13: 82.2*
Jan14: 82.2
Jan15: 80.4
Jan16: 82.4
Jan17: 85.4
Jan18: 85.8
Jan19: 86.0
Jan20: 83.6
Jan21: 85.0 ER
Jan22: 84.8
Jan23:
Jan24: 86.4
Jan25: 85.8
Jan26: 84.8
Jan27: 86.2
Jan28: Appointment

Notes:

Jan 8 -Carrots want me dead. Stabbing pain mid-abdomen for hours. Too much fiber? Second try at reintroduction.
Jan 13- 2 meals evening symptoms

Brain Dump Notes:

Gastritis
Diverticulosis (High Fiber)
(Which came first? What results in SIBO?)
Why no further testing? Where is my diagnosis? Ex: Methane vs Hydrogen
Where is patient education?
Dietician: How can she support me without a firm diagnosis? Methane vs Hydrogen

Risk Factors for SIBO:

Diverticulosis
Hashimoto's (Thyroxine oral solution-pre authorization)
Sharp turn from transverse colon to descending colon as per CT scan at ER?
Long term use of Pepcid, antacids
ER CT Scan: Ascending colon makes "sharp turn" to the transverse colon.

Treatments:

Rifaximin
Pepcid (self titrated off approx. 1.5 to 2 months ago) (self treatment)
Increased fiber (Self treatment)
Probiotics (VSL #4 shelf stable)
FD Gard
Simethicone
Abdominal massage routine


Pain KIller????
B12??
Digestive enzymes??? (Lipase for fats? Protease for protein? Anything?)

Test for SIBO:
Endoscopic aspiration small intestine

Follow up:?
CT Scan

Other antibiotic?

Food related:

**2 Diets (low Fodmap..
Lactose intolerant- no
Gluten intolerant-no
Death by food: Carrots, Eggs, Gouda Cheese, why?
Common enemies: Fats, Sugars, empty stomach

Out of Pocket Expenses (not counting how much food I've wasted)

FD Gard $100.00 per month
VSL#4 $1.33 per capsule ( 1 per day per month $40.00, 2 per day $80.00, 3 per day $120.00)
Simethicone $ approx. $.05 per tablet ( 4 per day per month $6.00 I typically take more)
Lactase Tablets (difficult to determine, take them hit and miss)

Somewhere in the neighborhood of nearly $200.00 out of pocket with NO prescribed medications.

Check into this: COVID-19:
Nirmatrelvir and ritonavir are protease inhibitors that block the replication of the SARS-CoV-2 virus.

In Paxlovid. Are they in the vaccines?

ADD ON from INSPIRE:

I've had Gastroparesis for over 2 1/2 years now. It is exasperated by Small Intestinal Bacteria Overgrowth (which of course is caused by the GP), and there are days where the pain and bloating is excruciating. The other day I just couldn't handle it anymore, so I took one of my Hydrocodone tablets that is prescribed for my migraines (I almost never take them unless I'm desperate and nothing else is getting rid of the migraine). Within 30 minutes the stomach pain was gone and I felt better than I've felt in a really long time. I almost wanted to cry because I felt so much better! I was able to eat dinner (Cream of Rice and a couple of pretzels) and feel fine afterward.

But I know these type of painkillers aren't great for you long-term, especially if you have stomach issues. A few days later I had another bout of pain/bloating so I decided to see if Extra-strength Tylenol would help. It took longer to work and didn't get rid of the pain completely, but it did take the edge off a little.

Just wondering what others take to handle this type of pain and bloating when it comes on. I've tried Bentyl with no results and even ground fennel that a lot of people swear by, but none of it helped. It's just so frustrating because I can't eat when I'm in this type of pain. Although sometimes I just force myself to eat and deal with the worse pain afterward, mainly because I'm already 25 pounds underweight and can't afford to lose anymore.

Sorry if I sound whiney. I just want the pain and bloating to stop!

[Jersey Girl]

Gastro doc appointment is tomorrow: I've got all my notes from the above post revised, 3 research studies in hand, and I think I'm ready to discuss any topic as needed. Also a box of VSL #3 to take so he can see the ingredients, amounts, and advise on dosage. Part of me wishes that my gut would tick off royally so he can see how messed up I get and the other part of course doesn't want that to happen--read my next comment. Feeling prepared for the appointment and we'll just see how that goes.

Update: I'm almost afraid to say this (because I've said it before and had it fall apart) but I think I might actually be winning the war over here. I've been eating more each day, skipping or going very conservative on any cheater but allowable snacks, my digestive system is for sure working, hardly any discomfort at all and...today's weight check was 86.2. In fact as I look at the daily weight checks I've done, the last week or so I do see an uptick in weight gain. I am NOT lactose or gluten intolerant--those things are on the "don't" side of Low FODMAP diet. Feeling good about how things are going right now!

Reward System: I am sure that on this thread I mentioned a reward system that has been my practice for the past oh,10-ish years so if I have something difficult to do, I plan a reward for myself. The reward could be anything, cost free or not. It could be for a hard thing upcoming or after the fact. One need only view my list of online purchases to know how often I've rewarded myself in the past 6 months. If something entirely hellish happened, I break out the big guns--thus the new sofa, new chair, and a ceramic piece from Pottery Barn for C'mas, and I don't care who knows it. Tomorrow's reward is stopping by the derm's medspa to pick up some much needed retinol serum. It's the best thing I have for skin care and I've been out for I'd say 6 months. I just couldn't get there from here kind of thing. I can't wait until the appointment is over and I go home with my good skin care! See how that works? I expect the appointment to go well. The reward is for the past 6 months and varying degrees of hell I've been through leading up to the appointment.

[msnobody]

Gastro doc appointment is tomorrow: I've got all my notes from the above post revised, 3 research studies in hand, and I think I'm ready to discuss any topic as needed. Also a box of VSL #3 to take so he can see the ingredients, amounts, and advise on dosage. Part of me wishes that my gut would tick off royally so he can see how messed up I get and the other part of course doesn't want that to happen--read my next comment. Feeling prepared for the appointment and we'll just see how that goes.

Update: I'm almost afraid to say this (because I've said it before and had it fall apart) but I think I might actually be winning the war over here. I've been eating more each day, skipping or going very conservative on any cheater but allowable snacks, my digestive system is for sure working, hardly any discomfort at all and...today's weight check was 86.2. In fact as I look at the daily weight checks I've done, the last week or so I do see an uptick in weight gain. I am NOT lactose or gluten intolerant--those things are on the "don't" side of Low FODMAP diet. Feeling good about how things are going right now!

Reward System: I am sure that on this thread I mentioned a reward system that has been my practice for the past oh,10-ish years so if I have something difficult to do, I plan a reward for myself. The reward could be anything, cost free or not. It could be for a hard thing upcoming or after the fact. One need only view my list of online purchases to know how often I've rewarded myself in the past 6 months. If something entirely hellish happened, I break out the big guns--thus the new sofa, new chair, and a ceramic piece from Pottery Barn for C'mas, and I don't care who knows it. Tomorrow's reward is stopping by the derm's medspa to pick up some much needed retinol serum. It's the best thing I have for skin care and I've been out for I'd say 6 months. I just couldn't get there from here kind of thing. I can't wait until the appointment is over and I go home with my good skin care! See how that works? I expect the appointment to go well. The reward is for the past 6 months and varying degrees of hell I've been through leading up to the appointment.

Praying for your appointment tomorrow. When you feel like it, let us know how it goes. Eat ice cream!— figuratively Or, literally , if I agrees with you.