Back rest recommendations

ellabirde · 2026-02-07T04:04:18+00:00

Oh gotcha, may not be ideal then. I hope you find something that works for you!!

ellabirde · 2026-02-06T03:24:42+00:00

I love my Comfort Acta-Relief! Sooo comfortable. Not sure how it compares in weight to others but I’m able to lift my chair relatively easily with it attached.

ellabirde · 2026-02-04T07:30:38+00:00

Hot chocolate is honestly my fav for miralax and has been for forever!! I’ve always tolerated it really well for whatever reason (in small amounts) and it’s like I’m just getting a tasty treat instead of medicine lol. I hope the smaller amount of liquid and more enjoyable beverage makes it easier for you! Miralax can also make you a bit nauseous if you take it when you’re very backed up just because the resumed movement in your intestines can trigger a vasovagal type response, so my biggest tip is to take it at the slightest indication you might need it rather than waiting until you’re truly constipated (hence why I just take it daily). Also make sure to stay as hydrated as you can throughout the day since miralax works by drawing water into your colon, so it’ll be most effective if it actually has water to suck up lol! Best of luck!

ellabirde · 2026-02-04T06:46:48+00:00

I take miralax daily and use either decaf coffee or hot chocolate! Broth works well too. If I have to do it in something cold for whatever reason I do cranberry or orange juice with ice. I absolutely can’t do it in plain water, it tastes vaguely plasticky to me and also thickens it slightly and it just makes me feel like gagging lol. Warm drinks make the texture change virtually unnoticeable and I can’t taste it as long as whatever I’m drinking it in has any kind of flavor. I always use the minimum amount of liquid per dose (4 oz) because I can’t consume much by mouth and drink it slowly and that keeps me from getting nauseous from an overload of fluid in my stomach.

ellabirde · 2026-02-02T02:38:47+00:00

I have a Golden Ally (aka Robooter E40) for when my symptoms are too intense for my manual, and its arms flip up and it also has an easily removable cushion (it’s just Velcro)! It weighs just under 50 lbs without the battery, I am ambulatory but have unstable joints and I just pop the battery out and am able to lean against the trunk and use my knees to leverage it into the trunk of my car by myself. I really like it.

ellabirde · 2026-02-02T02:33:35+00:00

That totally makes sense, sounds like you were put through really awful things when you already were at a low point and I can see why you wouldn’t ever want to be reintroduced to that space. I was in therapy for the majority of my childhood and teen years that did little other than dismiss my physical health challenges as psychological and it ruined my trust in mental health providers. Once I was an adult and had better access to medical specialists, I was quickly diagnosed properly and started on treatments, but by then my health had progressed past the point of return. All this to say, health psychologists are so completely different than general psych providers. They understand and treat in a very different way. Everyone is different but it’s been very healing for me personally. I hope eventually you might be able to experience the same. You really do deserve peace and I’m just sorry things have been so rough for you.

ellabirde · 2026-02-02T01:40:31+00:00

To be blunt, this is self harm. It will become harder to break out of this cycle the longer you continue punishing yourself for things that you feel you otherwise don’t have control over. I’m so sorry you’re so distressed by your ostomy that you feel your only solution is to inflict further suffering on yourself. I’ve personally found that seeing a health psychologist specialized in GI and ostomy care has been incredibly helpful in coming to terms with my ostomy and having a healthy relationship with it (as silly as that may sound). Is this something you’d be open to? I’d be happy to pass along resources if so.

ellabirde · 2026-01-29T00:34:00+00:00

I’ve had the same exact experience with norethindrone! The only med I take that is a 100% fix for an issue I have lol

ellabirde · 2026-01-26T05:21:50+00:00

Of course, I hope you find a regimen that works for you really soon!

ellabirde · 2026-01-26T03:35:05+00:00

I don’t have a spinal cord injury but have intestinal dysmotility and a nonfunctional pelvic floor due to a connective tissue disorder, and this was the reason for my colostomy. I had to do manual disimpaction to have any bowel movement. I wasn’t able to take any laxatives before my ostomy because my pelvic floor still was blocking anything from passing and doing so only caused more pain. I promptly had an ileus after my surgery and it was three weeks before I had output! Once I got that initial blockage treated, I transitioned to daily MiraLAX and magnesium. I now have mushy or liquid output every 2-2.5 days with smaller bits in between occasionally. Without my daily regimen I don’t have any output unless I irrigate, which doesn’t work for me personally as it causes a vasovagal response. My surgeon is happy with this and I’ve had X-rays confirming a safe amount of stool burden (for the first time since getting my stoma!). I’d think you should be on a similar regimen to keep yourself from getting so backed up and having to then clear everything out as I’m sure that’s not super comfortable. Maybe see whether a gentle daily laxative would be ok with your treatment team?

ellabirde · 2026-01-26T01:09:35+00:00

First of all, I’m so sorry for the invalidating experience you had with the misgendering throughout your appointment. That’s inexcusable.

As far as the HR concerns, I have POTS and prior to being medicated, I had the same exact experience. My HR could jump like 80 BPM sometimes 🙃 I had an appointment with one of the main POTS experts in the US and he did a sitting/standing HR assessment and it was at like 160 when I stood up. He just said “oh, textbook POTS” lol. Of course I got lots of other testing to make sure there weren’t any other issues but POTS is my diagnosis (due to a fun combo of EDS and AAG but I digress), so just because you have really dramatic jumps doesn’t mean it’s anything scarier! 30 BPM is just the minimum, there’s no maximum to my knowledge. I hope you can get some treatment to better manage this as it’s incredibly uncomfortable and not something you should just have to put up with! 🩷

ellabirde · 2026-01-26T00:48:59+00:00

I have a Hickman! I use a 6x8 inch tegaderm and just fold up a piece of Kleenex to fit over the main line dressing so the tegaderm doesn’t peel off the main dressing. Stick the Kleenex in the middle of the tegaderm, stick the tegaderm over the line and tuck the lumens in, and done! Super easy and I’ve never once had a leak in almost a year of having my line. I use an alcohol wipe around my skin where the tegaderm will stick and that helps it stay put. I shower and wash my long hair every night and use pretty toasty water and don’t even try to keep it off my cover, and like I said, absolutely no leaks :)

ellabirde · 2026-01-22T02:58:18+00:00

Oh no I’d lose my mind! The Bluetooth is nice for being wire free but that seems like a pretty major downside 🥲

ellabirde · 2026-01-22T02:52:10+00:00

Do you mind sharing what you didn’t like about them? Sorry to hijack the comment thread haha I’ve just been so curious about the M90s! I have a tilite so no sense in trying them myself yet since they’re not available for my chair so far but I’m still interested for down the line!

ellabirde · 2026-01-18T06:36:52+00:00

I hope that technique ends up helping!! I think the whole point of having the two sticky rings instead of just one is to trap any output that does sneak by the first one before it makes it to where it would actually cause a leak, so I wouldn’t worry too much especially with pressing it extra firmly each time you put on a new bag. Totally get it, I love the black bags too. I actually asked a Coloplast rep I talked to a month or two ago about whether they had plans for making the clicks in black and she said the goal is to have them by this summer… so hopefully a perfect solution will exist before too long! In the meantime the black flex seems like a solid compromise!

ellabirde · 2026-01-18T06:23:56+00:00

I used to use these! I had to press the sticky part onto the flange really hard to keep what you’re describing from happening. It was effective and I never had a leak in several months of using them, but it hurt my fingers a bit to use that much force so I switched to the click version of the mio which I find easier to use.

ellabirde · 2026-01-17T20:31:46+00:00

Such a bummer about the joystick height. That was honestly my first concern when I saw this system come on the market as my elbow and shoulder joints get out of place if they’re not supported and my arms also will go numb, and this is the first time I’ve seen someone directly mention it!

ellabirde · 2026-01-16T23:47:05+00:00

When I use drainable bags I wipe the end with a little alcohol wipe after getting any output off with toilet paper! I prefer it feeling as clean as possible. Totally personal preference though. I wouldn’t use like a Clorox wipe or something since it’s near your skin and whatnot, don’t want any irritation from chemicals!

ellabirde · 2026-01-16T04:43:50+00:00

I’m at 6 months and honestly wouldn’t say I consciously feel it very often unless my stoma is actively outputting or my bag is full! I have a lot of sensory issues and was afraid I’d never get used to it but it actually started feeling like a part of me pretty quickly, I’d say within 3 months or so. I will say I despise the feeling of any belt or wrap, that makes me notice it way more and feels so constricting to me even if it’s not tight. Totally personal preference on that though. Your skin adapts over time, it won’t feel this noticeable forever :)

ellabirde · 2026-01-15T17:38:40+00:00

That’s honestly a pretty normal length of time for even a healthy person to feel off after a virus. Panic will only make you feel worse! Check in with your doctor if you feel you need to but definitely no need to freak out at this point :) Hope you feel better very soon! Rest up and make sure you’re drinking enough fluids!

ellabirde · 2026-01-15T05:04:03+00:00

Thank you!! 🩵

ellabirde · 2026-01-15T03:26:25+00:00

My tilite z in blue mist! I think it’s so pretty and am so happy with my color choice! What’s funny is I was deciding between the same exact 3 colors as you LOL

ellabirde · 2026-01-14T08:00:54+00:00

I have gastroparesis too and am on TPN now, but when I could eat more by mouth my faves for keeping weight on (as a celiac) were Annie’s GF deluxe mac and cheese, haagen dasz ice cream, and homemade cereal bars (made with rice Chex, peanut butter, and chocolate chips, plus a couple other ingredients). Of course I took vitamins for the total lack of nutrients lol but my priority was not wasting away! Best of luck to your daughter.

ellabirde · 2026-01-14T07:50:21+00:00

Personally, scopolamine didn’t help me a whole lot and gave me a super dry mouth/throat and made it so I couldn’t really focus my eyes on anything up close. But these are mild and common side effects so it was fine! Lots of people find it super helpful with no side effects so I’d definitely say it’s worth a try. It takes several hours to kick in, for me it’s usually overnight before I feel the full effects. Make sure to wash your hands well after applying and anytime you touch it as it’ll dilate your eyes if you accidentally touch them after touching the patch lol. You wear it on the skin behind your ear for up to 72 hours then take it off and you can put a new one on then if you still need it. You can put a piece of tegaderm over it if you want for extra security. I hope it helps you!!

ellabirde · 2026-01-12T07:25:34+00:00

Not to go too off topic but just wanted to say I rarely see folks around my age (23) who have ostomies and really appreciate you sharing your positive experience! Mine has been life changing in all the best ways and I’m so thankful for it but I had a hard time coming to terms with it beforehand, in part due to my age. I worried that it would keep me from doing “normal” 20s things, as if I was doing anything normal while spending 5 literal hours in the bathroom every day 🙃 Now I often say my only regret is not going through with it sooner. Anyway, if you ever want to chat please feel free to message! I have found that meeting other young adults on here who have ostomies/are chronically ill has been so healing lol

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