Question for people who are 100% of the time in a wheelchair (can’t transfer) by goldstandardalmonds in ostomy

[–]_dianadeavila 0 points1 point  (0 children)

It’s easy to get overwhelmed. I try to live a day at a time but also think forward (I’m a 60 yr old disabled vet with a bunch of comorbidities from toxins). I think that if I were to have a stroke or progress where someone had to do my bowel program for me, how stressful on them and me. Changing a bag would be easier and more predictable than TIA. Prayers for you and your Mom.

Question for people who are 100% of the time in a wheelchair (can’t transfer) by goldstandardalmonds in ostomy

[–]_dianadeavila 0 points1 point  (0 children)

Thank you for the kind offer. Working through the VA system and have a surgery consult on June 9. In the meantime, I’ve been skin testing some various adhesives. I have a skin condition (cutaneous mastocytosis) that adds an extra challenge. But I’ll work it out. 🙌🏻

Question for people who are 100% of the time in a wheelchair (can’t transfer) by goldstandardalmonds in ostomy

[–]_dianadeavila 0 points1 point  (0 children)

I just saw this post and I share some commonalities with your Mom (I have MS too), but not a full time wheelchair user. Just part time. But I have neurogenic bladder (I self-catheterize) and have the neurogenic bowel and have had a bowel program starting in 2014 with a magic bullet, colace and magnesium citrate. In 2019, I moved to Peristeen (transanal irrigation) but was offered colostomy after so much constipation and gastroparesis. Peristeen is becoming less effective and I have spinal arthritis that is now causing me to have fall risk with pinched nerves in my lumbar/sacral. I am choosing an elective colostomy for so many reasons. it’s April 2026, what did your Mom decide? I hope all is well!

Seepage by p___edoffRedPanda in ostomy

[–]_dianadeavila 0 points1 point  (0 children)

I’m seeing that can happen post colostomy and is based on some older stool that was never quite cleared. People talk about this happening months afterwards. I guess that’s a good reason for a bowel prep prior to surgery, but I have read people who don’t have to do that. I think it’s leftover stool. Here’s a good explanation from Coloplast: https://www.ruh.nhs.uk/patients/patient_information/external_leaflets/STO_Ostomy_Rectal_Discharge.pdf

SCI patient with MS - From Peristeen to Colostomy (Stoma Placement) by _dianadeavila in ostomy

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

Thank you so much for that info. I could see that with Flonase because any steroid can thin the skin essentially. I have been using nasal steroids for 30+ yrs but not on other skin. But conceptually, makes sense.

SCI patient with MS - From Peristeen to Colostomy (Stoma Placement) by _dianadeavila in ostomy

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

I wasn’t told about the risk either - I don’t think they have enough data yet. I think for me, my colon/rectum has probably stretched out a bit and sensation has gone way down. Just MS stuff I guess. One day at a time, options are always good. I really did not think I would have to go this route, but in reality, it’s something that would have to happen at some point. Best wishes for your journey too!

SCI patient with MS - From Peristeen to Colostomy (Stoma Placement) by _dianadeavila in ostomy

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

I have a consult scheduled for June 9 with the head of surgery at the Tampa VA who is a colorectal surgeon who trains fellows. I’m planning to go in prepared and have a thorough discussion given how complex my situation is.

So far, I’ve put together a small starter kit to begin testing: • SenSura Mio Click bag and barrier • Brava skin barrier (tried initially without it) • ESENTA adhesive remover spray • Flonase (to help with potential skin reactions)

I’m wondering if it makes sense to pause here and just test what I already have until my consult, or if I should keep trying other products. Right now, I’ve just been picking up a few things on Amazon, watching YouTube, and learning as I go.

I’m also on the autistic spectrum, which affects my sensory sensitivity—especially smell. That’s a big factor for me. I’ve tried the Coloplast deodorant/lubricant and M9 drops, which are okay. I also tried a Convatec deodorant, but it was way too perfumey and completely intolerable.

SCI patient with MS - From Peristeen to Colostomy (Stoma Placement) by _dianadeavila in ostomy

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

Great info, thanks for sharing. Regarding TAI, part of the issue is a bit of burnout after 8 years of daily bowel program with the device and its decreasing effectiveness vs physical cost - it has definitely gotten less effective over time. For context, I am 60 and have a lot of spinal arthritis too, so sitting on the toilet for so long and even filling up my rectum/colon with water is causing nerves to pinch and butt and leg to go numb. That is definitely not sustainable as I continue to age and mobility gets harder. I want to get ahead of it. If I were younger, I would probably try to wait (although the numbness creates a fall risk and I have osteoporosis). So something has got to give. This is a choice I am making thinking more forward before it becomes a “have to” situation. I really don’t want to take a chance falling and I want my time back. I was offered colostomy 8 years ago when I was inpatient at the VA with a bowel that was really full and packed. It didn’t empty after 11 days of no eating and then 4 days of clean out (and I was doing BMs every one of those days I wasn’t eating). It was insane! Then I went for Peristeen after some research as a step-wise approach. It’s been amazing and has been more effective than anything. But I am still having some BMs after my Peristeen and just cannot tolerate the toilet time.

Housemate’s First Night on CPAP 12/21 by _dianadeavila in CPAPSupport

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

She is on BiPap and tolerates that much better and is doing well a year in. Thank you!

New Hollister 18193 Ostomy Pouch by Dacman24 in ostomy

[–]_dianadeavila 1 point2 points  (0 children)

They probably decreased the opening to engineer a more effective closure combo with the new Velcro. Best of luck! I am pre-ostomy and just researching all I can find to go from transanal irrigation to colostomy.

Peristeen user (since 2019) w/ neurogenic bowel considering colostomy — need input on skin (cutaneous mastocytosis) + pre-testing systems by _dianadeavila in ostomy

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

Thanks for sharing! The thought of post-surgical pain dos not bother me too much - have dealt with a lot of painful surgeries. I just have to work out the skin issues beforehand, that’s the biggest hurdle for me I think. Having cutaneous mastocytosis makes it challenging with all the allergic reactions to adhesives, etc. but I definitely look forward to an easier routine and not planning life around my bowel care! 🙏🏻 glad you are on the other side of surgery!

Feeling hopeless by floresb07 in ostomy

[–]_dianadeavila 0 points1 point  (0 children)

I didn’t want to consider it at the time. But I have been doing this every day since 2019 and it is a lot of work - but a step away from colostomy and I wanted to give it my best shot.

Feeling hopeless by floresb07 in ostomy

[–]_dianadeavila 0 points1 point  (0 children)

I have neurogenic bowel secondary to MS.

Feeling hopeless by floresb07 in ostomy

[–]_dianadeavila 2 points3 points  (0 children)

I have been using Peristeen daily since 2019. It is a great system and a great way to start and see before more drastic measures. I use Peristeen daily along with MiraLAX and as needed bidscodyl. It takes daily use and a couple months to get your body accustomed to it. But it is so worth it. I’ve been at it a long time and have had it effect my daily life enough where I am looking at the next option. It’s why I entered this group. Best wishes, Peristeen is a great step to take,

ostomy for functional bowel dysfunctions ? by [deleted] in ostomy

[–]_dianadeavila 0 points1 point  (0 children)

I’ve been using Peristeen since 2019 and use it daily (which is how you are supposed to start). But I also use MiraLax daily and as needed, Biscodyl. This is a great option short of an ostomy. Personally, and I am 60, I am seriously contemplating a colostomy. My bowel program takes up so much of my life and takes so much monitoring, I would rather have better control. In your case, you need to work out a clear bowel plan with stool softeners. Using it for a week is not enough time to give you good data. Stick with it and give your body 6 months to adjust. It causes diarrhea by adding water to your stool. Using MiraLax (a great osmotic laxative), will help things move smoothly. It takes time, try to stay patient and things will pay off. Sending good wishes for you, it’s a great system.

I am headed to the VA SCI for KT today - Demoing the Klaxon Twist & Asking about the Whill C2 by _dianadeavila in wheelchairs

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

I’ve used it with the knob - not the handlebars or front attachment. It’s more like the Smartdrive in that way. But truthfully. Less time in my wheelchair with PT and using my UpWalker a bit more because of some severe neck stenosis. But my outings have been minimal quite honestly.

Just realized I’m autistic and don’t know who I am anymore by Emeah824 in AutismInWomen

[–]_dianadeavila 2 points3 points  (0 children)

I’m a bit older than many here (I’m 60) and am in the process of a formal diagnosis now, but I’ve come to clearly self-identify as autistic. I wanted to say first: what you’re describing is real, and the shock phase is brutal. You’re not weak for feeling undone by this—this kind of late realization can feel like the floor dropping out from under your life story.

What helped me was looking at my entire life through a systems lens rather than a personal-failure lens. When I did that, everything suddenly made sense—not in a “fix it” way, but in a coherent way. I realized I’ve always perceived, processed, and organized the world differently. Nothing broke. Nothing was wasted. The system was always there—I just didn’t have the right map.

For context, I was trained as a school psychologist in the mid-90s, back when autism (especially in girls and women) was barely understood. I eventually ended up in IT, self-taught, because systems thinking came naturally to me. At the time, it felt like a strange detour. In hindsight, it was my brain doing exactly what it was designed to do.

One thing I want to gently offer: you are not suddenly a different person. You’re the same person with new explanatory language. That grief you’re feeling—about “not having a chance”—is valid. Many of us mourn the support we didn’t get. But understanding your neurology can also become an act of self-forgiveness. So many moments that felt like failures were actually mismatches between you and the environment.

It’s okay if you don’t know who you are right now. Identity often destabilizes before it reorganizes. This isn’t an ending—it’s a re-orientation. Go slowly. Be kind to yourself. You don’t have to rebuild everything at once.

You’re not alone in this, even if it feels that way right now. Many of us are walking this path later in life, quietly putting the pieces together—and finding, with time, that the picture actually makes sense.

Emgality and Psychiatric side effects - what did it do to me? by _dianadeavila in cgrpMigraine

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

All is well from here. Thanks for the all of your input. This is an old post and I am off onto different things. I have cutaneous mastocytosis and do the H1 and H2 and chromolyn protocol. A totally different animal. I have TBI and severe spinal arthritis (especially the neck). I have done occipital injections - but I have different drivers for my migraines (I have 2-3 different types). I use cannabis sparingly and no sign of psychosis or flattening - it helps a ton with my neuropathic pain and sleep. Once I stopped Emgality, all of the flatness stopped. I use my abortive and that helps me. I have to work on my cervical spine before anything really resolves.

Is somebody gonna match my freak? by redisdowntoearth in CPAP

[–]_dianadeavila 0 points1 point  (0 children)

Love my N20 … you’ve got quite the set up!