I know many of us our disabled or chronically ill, and now that I am “officially” palliative, I wonder if there is anything I should consider getting to make my life easier that I might not have thought of.
Thanks!
Just about to submit my form as I am eligible for three special diets. Is that tacked onto my monthly payment or does it come in a separate payment? Thank you.
Hey all,
Most of you know my story here and know me and a lot of us talk in chat all the time. I just thought I would share a small update and underscore the importance to getting a timely proper diagnosis.
When I was very young and first got sick, like many children and teens, it was brushed off as typical younger kid behaviour. Then as I got a little older, it became IBS, and my first gastroenterologist said he suspected Crohn’s but nothing he could do.
Fast forward and over the years I found the right doctors and the diagnoses came pouring in. Not IBS or Crohn’s.
Every test you can imagine was done, often multiple of each.
But treatment after treatment (including experimental stuff) wasn’t working. I think by this point so many years had passed *without* treatment that things got too bad.
As things moved on, and then came all the surgeries (nine so far in a short time), living on TPN, and so on, the doctors and I knew we were hitting an end. Sometimes an idea (usually very experimental) would pop up and we’d try it but nothing was helpful.
Recently I had another discussion with my current (and best) neurogastroenterologist and he said it is the end of the line, and part of the reasons no treatments work is also due to my complex anatomy and combination of what I have “wrong” with me.
So now it’s palliative care, still being followed by my various specialists but there are no more possible solutions, nothing in the zeitgeist in clinical trials, and basically just managing the symptoms I best can (even though I’d say they are not really manageable… I just take a ton of meds and get a bunch of pain procedures done regularly, plus other stuff).
I accomplished a ton in my life despite dealing with this and was really proud of that, but it all came to a halt and now I am mostly just in bed, living day by day, and unable to work anymore. It’s a lonely and boring existence.
I guess I’ll always wonder if these discovered things earlier where I would be. I live in an absolute wasteland for healthcare, and I know that maybe things weren’t figured out because the science wasn’t there when I was a kid, but I do think more could have been done.
Don’t give up and continue to research what you can do to improve your life. There is a lot out there. While I am thankful palliative care exists, I am definitely not happy this is the way things have turned out (who would be?)
My specialists are good ones, but there is only so much out there that exists so eventually we hit a wall. I just hate that I’m there.
I obviously will continue to help on this sub and others and like always, you can always send me a chat, but I just felt like I was due for an update since a lot of people ask.
ABSTRACT
Background
The UCon neurostimulator is a novel device providing dorsal genital nerve (DGN) stimulation for treating fecal incontinence (FI)/fecal urgency (FU). The primary aim was to explore its safety and secondarily its performance, hypothesizing that DGN stimulation would be feasible and safe, while reducing FI/FU.
Method
This was a prospective two-center feasibility study conducted in Denmark. Adults ≥ 18 years, with FI ≥ 1/week, and/or strong FU ≥ 3/week, and a St. Mark's Incontinence Score ≥ 9 were eligible. DGN stimulation was self-administered at home daily for 4 weeks in either a time-limited (30 min/day) or urge/on-demand (60 s upon urgency) modality. Safety was assessed through patient-reported adverse and device-related events. Efficacy was evaluated by comparing baseline data with the last 14 days of the intervention using symptom diaries, the St. Mark's Incontinence Score, and bowel-related quality-of-life measures.
Results
Forty patients consented (39 women), median age 62 years (Q1–Q3: 54–69), and 26 patients completed the study. An adverse and device-related median of 1.5 events per patient was reported, but these were mild and transient. Among patients completing the 4-week intervention, 74% (*n* = 19) with FI and 43% (*n* = 14) with strong FU achieved ≥ 50% symptom reduction (*p* = 0.005 and *p* ≤ 0.001, respectively). St. Mark's Incontinence Score (*n* = 26) reduced significantly from 16.0 (13–18) to 11.5 (9–15) (*p* ≤ 0.001).
Conclusion
Using the UCon neurostimulator in a home setting is safe and feasible. A 4-week stimulation period demonstrated significant positive results in treating FI and FU.
ABSTRACT
Background
The UCon neurostimulator is a novel device providing dorsal genital nerve (DGN) stimulation for treating fecal incontinence (FI)/fecal urgency (FU). The primary aim was to explore its safety and secondarily its performance, hypothesizing that DGN stimulation would be feasible and safe, while reducing FI/FU.
Method
This was a prospective two-center feasibility study conducted in Denmark. Adults ≥ 18 years, with FI ≥ 1/week, and/or strong FU ≥ 3/week, and a St. Mark's Incontinence Score ≥ 9 were eligible. DGN stimulation was self-administered at home daily for 4 weeks in either a time-limited (30 min/day) or urge/on-demand (60 s upon urgency) modality. Safety was assessed through patient-reported adverse and device-related events. Efficacy was evaluated by comparing baseline data with the last 14 days of the intervention using symptom diaries, the St. Mark's Incontinence Score, and bowel-related quality-of-life measures.
Results
Forty patients consented (39 women), median age 62 years (Q1–Q3: 54–69), and 26 patients completed the study. An adverse and device-related median of 1.5 events per patient was reported, but these were mild and transient. Among patients completing the 4-week intervention, 74% (n = 19) with FI and 43% (n = 14) with strong FU achieved ≥ 50% symptom reduction (p = 0.005 and p ≤ 0.001, respectively). St. Mark's Incontinence Score (n = 26) reduced significantly from 16.0 (13–18) to 11.5 (9–15) (p ≤ 0.001).
Conclusion
Using the UCon neurostimulator in a home setting is safe and feasible. A 4-week stimulation period demonstrated significant positive results in treating FI and FU.
Hey all,
I get my eyebrows threaded regularly, though due to budget I have been spreading out my appts longer than usual as I am unable to work and gas is expensive (my eyebrow lady is out of town).
I have been seeing her for 15 or so years and I remember I used to pay 5$! The good ol days, right?
Anyway, she completely helped me reshape my brows and as a teen in the 90s you can imagine how they looked at one point.
I have very long hairs so I trim them between sessions but never pluck them or my lady yells at me. (Also, it then screws up the growing in between sessions, so this is something I wont do).
I am so jealous of people who have beautiful, natural brows that look good all the time. Mine also have a bald spot, and I don’t always wear makeup as I have a chronic illness and it’s not my priority.
When my brows are done fresh I feel world’s more confident - I have low self esteem, but I am wondering if anyone has any advice for longer term solutions outside of doing them myself and filling them in.
I know laser is out as it can make you blind (no thanks), and I am not sure that permanent makeup or micro blading is worth it since I’d still have to get them done, it would just help the bald spot.
This is a photo of my brows and it’s been about three weeks since I got them done last. You can see my one brow is naturally a lot nicer than the other.
I know this is a lot of verbal diarrhea but I am basically asking those who don’t have naturally nice brows and get them professionally done, what do you do in between sessions to make them not look like a mess like this?
Please don’t mind me forehead wrinkles as I have a RBf and my brow is always furrowed. Yes I should probably get Botox but no, I won’t.
Thank you for any advice you have!
Edit: when I do my brows I use Brow Wiz and an elf wax to keep hairs in place. Brow Wiz is the only brand I’ve found that is a good colour match for me, everything else is too warm.
I bought one but only wore it once. It wasn’t for me. It is a size 30 (the size guide is on the website) and it is the horizontal kind. It fits a 2 1/4 inch /57mm wafer.
I paid 125$ CAD and would like to try to sell it as my ostomy supplies and medical needs are so expensive and I can’t work. I will accept any fair offer plus shipping.
Thank you!
Hey all — I know of local companies around Disney to rent things from but only from googling. Looking for first hand experience.
I would need a company to rent a hoyer lift from and possibly a bed rail. Obviously they would need to be delivered to the resort. Has anyone rented these items and had a positive experience with a specific company?
Thank you!
TLDR: my dysmotility is severe and I also have cipo, SMAS, and other stuff in addition to gastroparesis. I have an ileostomy, as well.
Currently I am on seven motility meds. I have added others to the regimen but they didn’t do anything so
I obviously stopped since they are so astronomically expensive.
My motility is still very stagnant. I lack peristalsis and my intestine is completely atonic.
Every time I see my neurogi I post here seeing if anything new is on the horizon. I read research constantly and jot down ideas. Last appt I left with some new ideas but unfortunately all have been bust so far (didn’t work, couldn’t get in my country, etc).
Anyway, I am wondering if anyone has some uncommon ideas that are not well known that has helped their motility for severe cases that I can bring up to my neurogi at our upcoming appt.
Thank you!
Hey all,
I’ve been on Zoloft for several years without issue. I am not entirely sure if it is working or placebo because I have intestinal failure and therefore have significant malabsorption. Because of this, every med I am on I am on really high doses since I don’t absorb the majority of it.
So anyway, I have been on 200mg of Zoloft for a long time. I’ve never noticed any notable negatives and like I said, my ocd is calmed down but that might just be placebo or maybe also my season of life.
Recently my psych and I were discussing some
Other habits of mine and he suggested some increases in some of my meds, including Zoloft.
I titrated to 300mg based on this and his guidance. I know this is a supratherapeutic dose, but given my anatomy it would make sense, so please don’t comment that it is too high. My psych is very good and not a drug pusher and I’ve had him for a decade. He’s great.
Anyway, while I haven’t noticed any positive effects, in the nearly three weeks I’ve been on 300mg my weight has gone up 7lbs. I normally fluctuate a few pounds like everyone but it just keeps rising. My diet hasn’t changed.
This is important for a main reason that a med I am on is dosed by weight, so I don’t want to mess with that dosage, but also my clothes are tight and I am disabled and can’t afford new clothes. Aesthetically I also look awful.
Had this happened to anyone? I am going to go back down to 200mg since I haven’t noticed any benefits anyway, but I assume that decreasing it won’t make the weight magically disappear either, and I’ll have to focus on cutting calories I guess.
What a pain. Anyone else? I’m sick of being on so many meds.
Thank you.
Background
Although the efficacy of mindfulness-based interventions for improvements in IBS symptoms has been demonstrated, the specific neural mechanisms contributing to these changes remain unclear.
Methods
A single arm interventional design was employed to explore functional brain network changes underpinning IBS symptom improvement in response to an 8-week mindfulness-based stress reduction (MBSR) intervention. Differences in brain resting state functional connectivity (RSFC) changes between 32 MBSR Responders and 16 Nonresponders with IBS after MBSR were computed using general linear models. An elastic-net regression model determined which RSFC changes were most impactful in determining MBSR responder status. Integrative association analyses elucidated the relationships between RSFC and symptom changes post MBSR.
Key Results
Following MBSR, Responders compared to Nonresponders showed large effect size decreases in IBS symptom severity and increased mindfulness. Responder status was associated with widespread changes in RSFC. In particular, decreases in the intrinsic connectivity of the default mode network along with decreased cognitive control-somatomotor network connectivity after MBSR contributed 56% variance explained in IBS symptom severity improvement. Decreases in these two connections were associated with extensive increases in connectivity between salience, default mode, somatomotor, control, and dorsal attention networks that were further linked to reductions in comorbid psychological symptoms.
Conclusions and Inferences
Overall, Responders compared to Nonresponders showed widespread RSFC changes suggesting a shift from a predominantly inward, ruminative focus to one characterized by more externally focused attention to the body and the environment. The results suggest that MBSR may improve IBS symptom severity via impact on the brain's RSFC.
ABSTRACT
Background
Visceral hypersensitivity (VH) is acknowledged as a critical pathogenic mechanism underlying functional gastrointestinal disorders (FGIDs), which is influenced by dysregulation of the gut-brain axis. Transauricular vagus nerve stimulation (taVNS) is a clinically used intervention for the relief of visceral pain; however, its underlying neural mechanisms remain poorly understood. Drawing on the pathogenesis of VH and our team's previous research, we hypothesized that taVNS mitigates VH through the nesfatin-1/corticotropin-releasing factor (CRF) pathway. This study aims to elucidate the potential central regulatory mechanisms that contribute to the analgesic effects of taVNS.
Methods
A validated VH model was established in Sprague–Dawley (SD) rats through maternal separation (MS) combined with acetic acid enema. The VH rats underwent taVNS at frequencies of 2 Hz, 10 Hz, and 15 Hz, whereas the sham group received 2 Hz electrical stimulation at the earlobe. The visceral pain threshold was evaluated using the abdominal withdrawal reflex (AWR) scoring and electromyographic activity of the external oblique muscle. Additionally, Western blot analysis was conducted to assess the expression levels of nesfatin-1, CRF, and its receptors 1 and 2 (CRF1/2R) in the hypothalamus.
Key Results
The analyses of AWR and electromyogram (EMG) responses indicated that (a) the area under the curve (AUC) of the EMG response to colorectal distension (CRD) at four distension pressures (20, 40, 60, and 80 mmHg) was significantly elevated in the VH group. (b) The AUC was significantly reduced in the 2 Hz taVNS group across all four distension pressures. (c) The 10 Hz taVNS group exhibited a significant decrease in the AUC at 20 mmHg and 40 mmHg. Furthermore, the results of Western blot analysis demonstrated that (a) 2 Hz taVNS significantly lowered the expressions of nesfatin-1, CRF, and CRF1R, aligning with the findings in the sham group. (b) Both 10 Hz and 15 Hz taVNS significantly decreased CRF expression, whereas nesfatin-1 and CRF1R expression remained unchanged. (c) There was no significant downregulation of CRF2R expression among the intervention groups.
Conclusion
This study demonstrated that taVNS alleviates VH, potentially via the nesfatin-1/CRF/CRF1R signaling pathway in the rat hypothalamus. Furthermore, the analgesic effect was frequency-dependent, with 2 Hz taVNS providing a more effective reduction in visceral pain.
Hey all,
So decades ago I was diagnosed with a weak, hypertonic pelvic floor with dyssynergia in my anus and rectum. My biggest issue was bowel, but also sex was impossible and I would be slightly incontinent with my bladder.
Fast forward to having several surgeries including removal of my rectum and anus (had already had my colon removed), and was warned that it could further affect the nerves in my pelvic floor and cause more issues.
It did and I dealt with it — my urogyn (who also then diagnosed OAB) suggested pfpt and a medication, but I decided against both because I can’t even afford basic medical supplies and meds I’m currently on. At this point my biggest OAB issue was a double pee each time (sit, pee, wash hands, have to pee again).
Then I had another emergency surgery in October and it made my bladder worse (not sure about my vagina but I don’t eff with that anymore). I know anesthesia and catheters can affect things, and over the weeks post surgery things improved a bit.
But since then, I have constantly had this new thing going on. I get extreme urgency and basically have to find a toilet right away where ever I am. Like if I out for a walk I have to find a bush. When I do pee, it is no more than a tablespoon or two. But as soon as I finish, I get this hot, painful, not really spasm but feeling like I have to go more (but I don’t), and the only thing that relieves the sensation is taking my hand and pressing firmly on my urethra (over the clothes because it adds a layer of firmness) until the sensation passes, about 30 seconds.
This is happening so often and I’ve never had this before, even when I used to trickle other times.
Anyone have any insight? I see my urogyn in May but I am not able to describe it that well and would love if I can bring any ideas to her.
Thank you and sorry so long.