what it feels like: living with colitis after ostomy is 'not a shameful thing'
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mollie tinnin is a program manager at the american red cross and an ostomy advocate.
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mollie tinnin is a baton rouge-based disaster program manager and ostomy advocate. she lives with ulcerative colitis, which became a core part of her life when she found she needed a life-changing ostomy, which is when a hole (stoma) is made surgically through the belly to allow stool or urine to leave the body.
today, she’s learned how to cope with the symptoms and complications, and works as an advocate for patients facing disability or chronic illness, and helps them learn how to stand up for themselves in the healthcare system. this is her story.
i was really sick for a really long time and just didn’t realize it. i ignored the symptoms, excusing them by saying, “oh, i’ve just got an upset stomach.” four years ago, when i was 30, the moment of realization came when i was on a business trip and collapsed at baggage claim right after i got off the airplane. it had me wondering, at what point do you push that button for help?
i was diagnosed with ulcerative colitis, and told that i needed an ostomy to save my life. i was told right before surgery that it was going to be temporary, but i never did go back to normal life. it changed everything.
i ended up getting my ostomy, but i didn’t qualify for a reversal. [the doctors] went in, made my ostomy permanent, and took out my rectum to help slow down the disease. and in the process, they accidentally cut my sacral nerve, which is not a common complication, but it does happen in about one per cent of patients. i do a lot of patient education now, and i always joke with people, “don’t worry about the one per cent of complications, i’m the one per cent! you’re not going to experience it, i already did.”
‘i wasn’t able to urinate’
at the time, when i woke up from surgery, the first thing i asked was for them to remove the foley catheter (flexible tube that is passed passes through the urethra and into the bladder to drain urine), which i hated. but when they did, i wasn’t able to urinate, and they said, “oh, it’s normal, this happens, it’s just inflammation. we’ll put the catheter back in, give it three days and then we’ll take it back out.” three days later, i still couldn’t urinate. i ended up staying in the hospital for 14 days because they were so afraid of kidney failure. the nerve damage was so bad that i was unable to empty my bladder and went into permanent urinary retention.
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i had to self-cath for about eight months before my insurance would approve what’s called an interstim, which is like a pacemaker that goes in the base of my back and it operates my bladder for me. but i had to go through all these treatments and tests to confirm that nothing else would work and that my bladder wasn’t going to miraculously start working again. when i did get the interstim, i hadn’t used my urinary and pelvic floor muscles for so long that i started leaking. if i went to a yoga class, bent over and did a pose, i would leak. if i laughed too hard, i would leak. if i waited too long to go to the bathroom, i would leak. it’s one of those things where you have to plan everything, including just packing extra clothes. it adds an additional hurdle. i still struggle with that. i’ve gone to pelvic floor therapy, and it’s helped. just getting used to using those muscles again has made a difference.
while today it is all mostly manageable, i do require medical intervention for pretty much everything, for my ostomy, for my pacemaker for my bladder, and for the port that i use to give myself medications every day. as long as everything is fully functioning and everything is going smoothly, it’s fine, i’m completely independent. but the minute something goes wrong, i become completely dependent on other people. and as a 34-year-old who’s super independent and has an incredibly demanding career, i don’t have time to be relying on other people. so it takes a lot out of me.
during the whole process, too, my mental health was completely destroyed. adjusting to having had an ostomy and adjusting to a diagnosis that changed my life was huge. chronic illness and mental health issues, like depression and anxiety, go hand in hand. i wanted to go to an inpatient program to be able to just focus on adapting to my new diagnosis, my new ostomy and my urinary issues. mental health facilities have a bad reputation, but at the end of the day, if you don’t always have access to a phone or the outside world while you’re there, it can help because you need that sometimes to shut your brain off and focus on finding a way to move on from it or to adapt to it.
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because the thing about incontinence is that it’s more common than people think, we just don’t talk about it because it’s embarrassing. especially with new moms who’ve given birth; you just put your reproductive and urinary system through a lot and it results in leakage and incontinence. or maybe you just had life-changing surgery and you’re adjusting to that, and on top of that you have to deal with incontinence. it’s adding insult to injury, and it feels shameful. but it’s something that’s so common that i’m sure if we did share it, we would find many people with open arms willing to love us through it and talk about their journey as well.
what i would advise to others experiencing something similar, and who have not yet reached a point where their condition feels manageable, is to not expect your doctor to provide you all the resources. they have the expertise to deal with the medical condition, but not necessarily the mental part. they know what their textbook tells them, but they don’t know what the patient experiences and that’s something that i’ve found frustrating.
connecting with other patients is key
as a patient, you have to be proactive, you have to go out there and find resources on your own. and that might sound intimidating, but there are tons. we live in a world today where we have access to things that we’ve never had access to before. as much as i hate social media, i think it’s a gift to patients. go on instagram or tiktok and use hashtag incontinence, hashtag ostomy, hashtag mental health and you’ll find a wealth of resources.
connecting with other patients is also key, because even a therapist isn’t going to know what it’s like to interact with a port all day. but if you talk to someone who has been through what you have, maybe you can prevent an er trip because you joined a patient group on facebook and posted a question about being unable to get a needle in, and within a matter of minutes, you had 20 responses and you were able to troubleshoot before you panicked.
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for me, there has been a lot of catharsis in doing advocacy work, which is important to me because when i was learning how to cope, it was non-profit organizations that reached out. there was no, ‘i’m going to help you with this, but you owe me this in return.’ it was simply paying their experience forward and, without that, i wouldn’t have been able to cope. i walked away from a lot of my medical experiences angry at what the healthcare world doesn’t provide. for example, if you do major surgery on someone, you should provide them a mental health referral before or at that time. as part of my work, it’s been important to me to make sure that those resources were right in front of people when they needed them. i didn’t want anyone to go through the same experience that i did.
at the end of the day, i hope people are not afraid to talk about the things that they’re going through. i’ve had negative experiences talking to people about my medical journey, but nine times out of 10, who i’m opening up to has either experienced something similar or knows somebody who has. the only way that we can break down the stigma of these conditions is to talk about them. and the only thing that’s going to keep somebody else from delaying medical care because of a fear of what they’re going to have to go through is to share openly.
so it’s not a secret, it’s not a shameful thing. it’s just that we’re human. we all go through things, we’re a community and we get through together.
many medical conditions are talked about openly, but others — like incontinence — are rarely discussed because we find them embarrassing or shameful. stigma can stop people from seeking the help they need, and shame can prevent them from making meaningful connections with other people who have had similar experiences. no one should be embarrassed to talk about their health, and we’re proud to help people like mollie tell her story.
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sadaf ahsan is a toronto-based culture writer, editor and stereotypical middle child. she can be reached here.
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