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  • What's New in colostomy

    I'm new here!

    Hi, my name is Mandy. I’m new to The Mighty and look forward to possibly being able to share my story, and learn from others stories.





    #ADHD #Colostomy #IrritableBowelSyndromeIBS

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    Thought I should post something to see if I am getting the hang of this site! I don't like to be defined by my health issues but in this situation it seems like a safe place to do so. I am 32, got ill in 2016 with perianal sepsis. Prior to that I was fit and healthy. I now have a #Colostomy and #ComplexRegionalPainSyndrome following significant tissue loss and nerve damage to my pudendal area. I had to leave my career which has lead to pretty bad #Depression and #Anxiety I also experience #PTSD following the initial event of 2016 where I was in critical care and my family were all abroad.

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    Sometimes you just have to laugh!

    ** My Attempt At A Poem...sometimes all you can do is laugh**


    As I lay me down to sleep
    My naughty stoma becomes a creep

    "No rest for you it screams and shouts"
    It really can be a lout

    I contemplate arising from the bed
    To extradite this bag of led

    My back refuses to let me move
    My legs insist they're not in the mood

    A dilemma presents
    No solutions invent

    Oh deary me,
    now I need to pee!

    #Stomas #Colostomy #RareDiseases #Life #funny #ChronicIllness

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    Exciting new ventures!

    I've been out of work since my health started to really decline in 2017. I hate it. Although I learned (and remind myself frequently) that my worth isn't measured on the money I earn or the hours I work, that doesn't mean I dont miss feeling productive and useful (not to mention bored out of my head).
    In the last few months I have fallen in love with sewing and I learned that I am really good at it!!
    I started off making bags and purses and similar accessories and many of my Facebook friends were urging me to start a business. But I mostly ignored them, thinking it friendly encouragement.
    This week, 5 weeks post op from my stoma surgery I finally sat back at my sewing machine and the first thing I made was a stoma bag cover. Proud of my success I posted pictures both on my personal facebook and in the stoma and medical support groups I am part of. The likes and the comments started rolling in. In fact I was blown away with the response, almost a hundred likes on each post. And people kept asking me if I was selling.

    So I've spent the last couple of days building a page, taking photos of all my fabric so people can choose the fabric they want (O learned I have a tone of fabric!). The orders are rolling in already. End of the day, and I am knackered. But I feel good!!!

    I am going to have to be careful not to put too much workload on myself, but I think this is what I have been needing. A small business, where I can set my own hours, take breaks when needed and genuinely help people, as I know stoma bag covers and catheter bag covers and other accessories for medical stuff is important to people (so far I have commissions for a syringe roll and a stoma bag supply roll). I doubt it will ever lead to lots of profits, but it will keep me busy, give me purpose and probably really help my mental health.

    Anyway, Jen Bee Bags is officially open for business. Please feel free if you have read this far to head over to my page and give it a like and and a share.

    #Stoma #stomabagcovers #Backtowork #MentalHealth #happy #Urostomy #Colostomy #illeostomy #InflammatoryBowelDiseaseIBD #InterstitialCystitis

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    Why Insurance Limits on Supplies Aggravate Me

    If you remember my article about my recovery from sepsis, Fournier’s Gangrene and osteomyelitis, you may remember I had to have a colostomy put in in order to help keep an ongoing pressure ulcer clean. What you don’t know is that prior to that, in 2008, I had a urostomy created to drain urine. This was put in in the middle of my body, after an initial placement on the right side of my body kinked off and I had my second bout with sepsis. This would present a challenge when it came to my colostomy.

    You see, my urostomy’s location is such that it’s in a fold of my abdomen. That means that ostomy pouches don’t stick very well because as I move around in my daily life, they come loose. In fact, most of the time I don’t even try to wear that pouch, and only use my colostomy pouch because that one is absolutely a necessity. (I use Depends for incontinence, so I can change every few hours as needed. Ironically, what I’m talking about currently doesn’t apply to incontinence supplies like adult protective underwear.)

    So, here I have the issue. You see, insurance being what it is, they have limits on how many supplies they’ll pay for in a month. In my case, the Department of Veterans Affairs Spina Bifida Program which pays for my care will allow my home health provider to send 20 ostomy pouches a month. (My Spina Bifida was connected to my dad’s Vietnam service in the 1970’s.) With my unique situation, that’s not nearly enough for me to get through a month! Not even remotely close. I have to jury-rig a solution for the next few weeks or until I can get another delivery, and that’s unacceptable to me.

    And this is why I am writing this, after running out of ostomy pouches for about the 5th month in a row (or, ever since my most recent hospitalization). I hate insurance. I hate their arbitrary limits. I hate how they require authorization. I hate the waiting in limbo to get more of the supplies I need, or finding a supply delivery on my doorstep only to realize that something I badly need, isn’t in that delivery. I’m so mad right now, as I write this on a Sunday morning, I can’t see straight. Particularly in this time of a global pandemic, whether it is private insurance companies or the government, nobody should be limiting the amount of supplies provided to their beneficiaries.

    I realize this is an expensive proposition. But, we’re in unique times. This calls for thinking outside the normal box. This calls for significant changes. Let’s stop forcing people like me to adapt to their policies, and let’s start adapting the policies to the people.

    #Sepsis #Colostomy #HealthInsurance


    Wednesday #Anxiety #Surgery #CheckInWithMe

    I’m having surgery on Wednesday to get my colostomy and my anxiety is about at the breaking point. I’m not really worried about the surgery itself; it’s more the unknown of what life will become after with an ostomy. I’ve heard from other ostomates that it’s more “mind over matter” and that makes sense. I’m just worried at how my mind is going to cope...or not cope honestly. A small, selfish part of me almost wishes it won’t work and they’ll reverse it but we’re kind of at the end of potential solutions and I know that’s just a different headache if it came to it. I’m pretty terrible at being vulnerable; in fact I pretty much avoid it at all cost. Posting on here feels different somehow; more detached maybe. If anyone has any suggestions or ostomy life tips I welcome them. #Colostomy #Ostomy


    Any advice for a newbie to Ostomy Bag?

    Things are looking like I may get an ostomy bag due to no meds are helping my colon work. I also have a GJ peg feeding tube port. #Colostomy #Ileostomy #OstomyBag #Gastroparesis #FeedingTube


    #Colostomy #BorderlinePersonalityDisorder #Anxiety #TreatmentresistantDepression #HiatalHernia

    My landlord is going to come over to my house tomorrow, Sunday, to repair my bathroom. He wants to come in the morning and I don’t really function well until the afternoon. I hate not owning my own home and having to arrange things around the landlords schedule. I’ve been sick from a hiatal hernia for several months now and so my house is messy and very dirty. I’m embarrassed to have anyone come in especially the landlord. I haven’t been well enough to clean or even pick up messes. Depression has me in its grip too. I just want to stay in bed. Actually I don’t want to be alive anymore.


    My pelvic floor sucks #PelvicFloorDysfunction #Colostomy #Anxiety #CheckInWithMe

    I had an appointment with my colorectal doctor this morning and it looks like a colostomy is in my near future. We suspected this might be the case; my pelvic floor just sucks. More tests and my doctor is going to share my case with some colleagues just to get confirmation but it’s just a lot to take in.

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    I can’t stop crying or do anything. #BorderlinePersonalityDisorder #Depression #Anxiety #Colostomy

    It’s Sunday afternoon and I am still in my PJ’s. My house is a mess and very dirty. It is beautiful outside but I am not taking advantage of it. I feel very lonely and so sad. I am 72 years old and I wish I would just die. There’s no reason for me to still be alive with the number of close death experiences I’ve had , e.g., 5 heart attacks, being in a 7 week coma, cancer, going septic and other stuff. I don’t have any children or husband or many friends. I’m on a modest fixed income so don’t have the budget for movies or eating out. My physical problems limit what I can do in nature.

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