26 People Describe What It's Like to Experience 'Poopsomnia'

26 People Describe What It's Like to Experience 'Poopsomnia'

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When chronic illness affects your gastrointestinal tract, it doesn’t just cause issues during the daytime. GI symptoms such as constipation, diarrhea, bleeding or cramping may often flare up during the night, keeping you awake and running back and forth between your bed and the toilet –otherwise known as “poopsomnia.” While this may be common for GI disorders like inflammatory bowel disease (IBD) or irritable bowel syndrome (IBS), it can be caused by any number of illnesses.

Although it can be awkward and difficult to open up to friends or coworkers about personal “bathroom issues,” the reality is that issues like poopsomnia can have a significant impact on many aspects of a person’s life. We shouldn’t have to feel embarrassed to talk about symptoms that are beyond our control.

To better understand the many ways this issue can affect people’s lives, we asked our Mighty community to share what it’s like to experience “poopsomnia” because of a chronic illness. Do any of the following sound familiar to you? Let us know what your experience with poopsomnia has been in the comments below.

Here’s what the community shared with us:

1. “A good way to explain it to someone that doesn’t have it would be: when you have a flare-up, it’s basically like having a stomach virus that doesn’t go away.”

2. “When I was so sick with ulcerative colitis that I would poo around 30 times a day, some of that was during the night when I should be sleeping. To be rudely awakened by your colon with intense pain and sudden urge is an indescribably scary [thing] you don’t ever want to experience.”

3. “Poopsomnia is hours of mindlessly scrolling through Pinterest, being able to get from your bed to the bathroom in less than five seconds and with your eyes shut, having a sore bum from sitting there so long, and trying so hard to not fall asleep, even though you know if you get off and go back to bed you will end up back at the toilet in 20 minutes anyway.”

4. “I keep my bathroom stocked for every/any occasion.”

5. “It’s not just physically exhausting, but mentally as well. When you haven’t slept through the night in a year, it starts to affect you – you become short-tempered and moody. It affects those around you and not just you.”

6. “People don’t think IBS is any big deal, but they don’t live with it, they don’t understand how many ways it affects your daily life. People don’t understand how painful this is, how much you think about it, how much your life revolves around it, how you feel sick and/or in pain almost constantly, how you’re almost always left in a state of frustration, how sad and isolated it can make you feel.”

7. “During bad flares I just sleep on [the] couch so my bathroom antics don’t wake my husband.”

8. “It’s the frustration of thinking you’re finished, getting up, going back to bed then just when you’ve gotten comfy, the cramps start and you need to head back to the toilet.”

9. “When I’m in a flare-up I might as well move my office into the restroom, because I’m never out of it long enough to get anything accomplished. (Like right now!) And after a day or 10 of constant crapping, I am so weak and tired I can’t function, which usually triggers an autoimmune response and I get another illness, like pneumonia. Good times.”

10. “When people tell me they poop once a day, I cry from laughter.”

11. “Poopsomnia made me start wearing men’s boxer briefs to sleep in because washing the sheets every night, in the middle of the night, was exhausting.”

12. “It is feast or famine with gastroparesis and my meds regime. I either go 12 times in a day or every three days, even with stool softeners and walking. I have literally slept on the toilet before.”

13. “The saying ‘you can’t trust a fart’… yeah, well, it just got even worse. You can’t trust any movement your body thinks it should release while sleeping. Makes it even worse when you have insomnia and have a poopsomnia moment of panic, but being drugged to sleep is like a 90-yard dash in slow motion to try and get to the toilet. Even worse when your dog is trailing behind trying to make sure everything’s good but being another road block. You never know when it hits you.”

14. “It’s awful. You’re not only so tired you don’t want to get up but you also have lower abdominal pain if you try to wait. Running back to the bathroom every 10 to 20 minutes is a real pain in the butt… literally! By the time I get to sleep it’s like I’ve been asleep for five minutes.”

15. “I have IBS and interstitial cystitis so I have peesomnia as well! When I feel like I can finally climb into bed, pull up the covers, close my eyes and sleep, it’s time to run to the bathroom again.”

16. “It’s like your illness doesn’t want you to rest. You are already exhausted for having spent all day on the toilet, you hope to fall asleep and, just like the postman, ‘Knock knock! I’m here and I want your attention! Time to run!'”

17. “You know you have poopsomnia when you get tired of getting up every half hour to ‘go’ again so you decide to save yourself the trip and just go back to sleep while still sitting on the toilet. In theory it seemed like a good idea until you’re jolted awake by the sudden feeling like you’re falling and you can’t stop yourself (I hate those dreams) – but in reality you were really falling… right off the toilet!”

18. “When my endometriosis gets really bad I can be up all night in the bathroom trying to find relief, tossing and turning from stomach cramping. Getting maybe an hour of sleep, then having to get up at 5 a.m. to get ready to go to work. It’s exhausting and you can’t exactly call in to work, ‘Hey, sorry, I can’t come in, I was up all night trying really hard to poop!'”

19. “It’s knowing some days you probably can’t go out or work because you need the restroom close – anywhere from a few minutes to less than an hour or two. Or you just had no sleep the night before [and are] possibly dehydrated as well.”

20. “Mine always seems to like to strike when I get into bed. Relax for five minutes and boom, stomach turns over in that way that means ‘get to the bathroom now,’ and then it will do that up to 10 times in a row, maybe with 10-minutes breaks.”

21. “The poopsomnia is bad, but even worse is getting up at 4 a.m. when I work at 8 just so I can start trying to prepare my bowels for work. Then still being late to work because four hours isn’t enough time to make my body cooperate.”

22. “I have had ulcerative colitis for 24 years, and I have struggled with this every… single… night. I’ve tried to stop eating so close to bedtime, taking anti-diarrheal medications (over-the-counter and prescription)… Nothing helps. I’ve even tried sleeping pills but that results in an embarrassing accident because I’m so medicated I don’t wake up to use the bathroom.”

23. “I worry all night about finding that balance of being relaxed, but not too relaxed. The worry is a cycle, and after 24 years my body is responding to sleep like someone might respond to aversion therapy. My body craves sleep – but the pain or urgency kick in and remind me not to relax completely.”

24. “You might think, ‘Oh, it’s not a big deal.’ [But] it’s not one night of running to the bathroom. It is every…single…day…forever. Not sleeping properly doesn’t help our bodies. It doesn’t allow our bodies to repair themselves properly.”

25. “[With] my medication Metformin, I go through phases, mainly when my dose is changed, where the flood gates open and I’m up…all night. I have slept on the toilet before. Or I’ve worn a diaper to get some semblance of sleep.”

26. “I never thought something that made me so frustrated could have such a funny name.”

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Coping and Self-Care When Your Child Is in the Hospital

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When your child is sick in the hospital, it can feel like you’ve entered an alternative universe. That heartache hit me like a tidal wave while caring for my desperately ill son in two children’s hospitals for eight months straight in 2015. Scared witless as Crohn’s disease spread inflammation throughout my son’s digestive track, all I could think about was how to ease his suffering and make him well again. Time was marked from one nursing shift to the next rather than normal day and night.

I admit it. When the flight attendant says, “If you are traveling with a child, please be sure to put your oxygen mask on first so you can take care of your child properly,” I am the mom you would find passed out in the aisle. Because there is no way I can imagine not putting the oxygen mask on my son first.

My instinct will always be to care for and protect my son first and foremost. When he is very sick in the hospital, I am laser focused on making him well to the point of exhaustion. But I’ve learned the hard way I have to somehow fit in some self-care and coping strategies or else I hit a wall of stress implosion. Not pretty.

Taking care of a sick child in the hospital is physically and emotionally exhausting, so be kind to yourself. To make it through the caregiver marathon, you need to try to keep up your strength and pool your energy. Here are suggestions for coping, trying to keep your spirits up, and taking care of yourself as the parent.

Getting Support

It was hard for me to admit I needed help. I felt like I was bothering or inconveniencing people by asking for anything. I confided my internal struggle to my wonderful Rabbi, Robert Nosanchuk, of Anshe Chesed Fairmount Temple in Beachwood, Ohio. He wisely asked me if I would hesitate to do anything I could for someone I care about going through something similar. Did I really think I could manage without having help? And what’s the point of having a community if you don’t share the tough times as well as the good times?

So turn to the family and friends you are closest to who are truly supportive. Be honest with yourself about who will be really helpful and make you feel better vs. inadvertently make things harder.

Welcome offers to help with food, keep an eye on your home, run errands, take care of your other child(ren), etc. For food, politely mention food allergies, being vegan or vegetarian, or keeping kosher so people don’t unknowingly prepare food your family cannot eat. If someone asks how they can help, mention specific ideas appropriate to your relationship, like would you mind bringing me a salad or picking up a couple of things from the grocery store vs. could you please stay with my child for two hours this week while I take a nap.

 

Taking Care of Yourself

Try to find a time each day to leave the hospital floor when someone else will be with your child, even if it’s just to take a walk on the hospital main level. Some fresh air if the weather allows is priceless. Exercise can be very cathartic and clear your mind.

Sleep is at a premium in the hospital, what with those endless middle of the night vital checks and background sounds and beeps along the hallway. So sleep whenever you can, taking turns if you have a partner, family member or friend you can switch off with. If sleep eludes you despite your exhaustion, it’s undoubtedly the stress and emotion that can hit hard when you least expect it. Try relaxation approaches like curling up with chamomile tea and soothing music. Then just close your eyes for a few minutes and you might be surprised how soon insomnia turns into well earned sleep. I always set the alarm on my iPhone for the amount of time I had allotted while someone else was with my son so I could sleep without worrying I’d be late to get back to the hospital.

If you experience any health symptoms or issues while you’re in the hospital for your child, be careful not to ignore important signs. Be sure to stay on schedule with any regular medications you normally take. If you develop a major problem that could have been avoided by keeping to your normal health care routine, you not only risk your own health, you could impact your ability to be an effective caregiver.

Coping Strategies for Your Heart and Mind

  • Think of quotes or sayings you can use to help you get through the day. One step at a time, one day at a time. Post some favorite quotes in the room that give you comfort. For example, one of mine from Christopher Robin is: “You are braver than you believe and stronger than you seem.”
  • Consider journaling, whether privately or through a website. Writing can help you express your feelings and articulate your worries which can be very cathartic. A website like CaringBridge or CarePages can give you that outlet while keeping friends and family up-to-date in a private community setting.
  • Try to find humor wherever you can. Your sense of humor and positivity can relieve stress, keep your perspective and help your child cope. When my son kept getting re-admitted to the hospital multiple times, I would make a game of coming up with the silliest jokes and wisecracks on the first day to help us both keep our spirits up. Laughing is therapeutic. This might be the perfect time to stream a goofy sitcom or an old “Abbott and Costello” or “Three Stooges” movie.
  • Whether deep breathing, spirituality, praying or meditation give you comfort, use them to keep your spirits up and get some rejuvenation and keep your sense of peace and hope. If you belong to a church or synagogue, let them know your child is in the hospital so the clergy may visit you and give you support. The hospital might have therapists and/or social workers who specialize in helping families cope with a hospital stay.
  • Seek entertainment to take your mind off things. Reading a mindless novel, stream a favorite show or play a fun game to distract yourself in short pockets of time between doctors, nurses, medical tests and caregiving.

Handling and Learning About Your Child’s Medical Issues

One of the hardest things is processing difficult news and understanding complex medical issues. Knowing how much my son was suffering, I didn’t want him to see me crying and scare or confuse him. When you feel emotion overwhelming you, see if you can take a walk down the hall to find a quiet place to think and cry. I asked my child’s nurse to keep an eye out for my son or did it when family was there so he would not be alone. I wrote down the top things worrying me and questions for the doctor. It helped to get the sadness out, take a deep breath, and then go back to his hospital room with a clearer perspective. Plus that list of questions gave me some feeling of control, like I could at least try to understand the situation and alternatives as best as I could.

Research the medical issues you’re dealing with but ask your child’s doctors to give you perspective since “Dr. Google” can give you very scary answers. I tried to only read very reliable sources (NIH, Mayo Clinic, national nonprofits related to my son’s disease such as the Crohn’s and Colitis Foundation), especially avoiding sites that were like infomercials pitching products or treatments that would magically fix my child for a crazy amount of money.

If you are dealing with a specific illness or condition, connecting with other parents who have coped with the same thing when their child was a similar age can be very helpful and reassuring. For example, I discovered wonderful Facebook Groups for parents of kids/teens with Crohn’s or Ulcerative Colitis, in addition to the nonprofit Crohn’s and Colitis Foundation. Once I shared what we were going through, I was grateful to some of our friends who connected us with people they know who had walked the same path. Whether as simple as emailing, Facebook messaging, chatting on the phone or meeting for coffee, hearing from parents who had gone through a similar journey was invaluable. Nonprofits dedicated to the specific condition can also be fantastic sources of information and networking.

What strategies have you found most helpful to take care of yourself through a hospital stay?

I know how hard it can be to live in the surreal hospital time zone. The world becomes the four walls of your child’s hospital room and hospital floor. It can be hard to keep perspective and hope for the future, especially when the prognosis feel bleak. With chronic illness or medically complex children, it is common to have up and down cycles with their health. We cherish the good times when we are at home and do our best to cope with the tough phases. I hope whatever you are going through will get better soon.

A version of this story was originally published on Gooseling.com.

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10 Strategies to Help You Feel Beautiful When You're Chronically Ill

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Let’s face it. It’s hard to feel attractive in your own skin when you feel like your body is turning on you.

If I am sick, I struggle with feeling beautiful in my own skin. I remember becoming sicker and sicker, and people would continue to tell me how great I looked. I’m sure I looked at a few of these people like they had three eyes. I may have looked great, but honestly at times, I felt like I was dying. That is the thing about having an invisible illness. There are times when it can all feel like a cruel joke.

It’s hard to feel attractive when you are crawling from room to room… or when your stomach is distended from gastroparesis… or when you’re throwing up because you are so dizzy and your blood pressure has plummeted… or when you are taking a shower and some of your hair falls out because you are not getting enough blood to your brain. It’s hard to feel attractive when your fatigue is so severe, you feel as if you have a never-ending case of the flu.

But in my opinion it is possible and it’s something that takes time and conscious effort. As I have learned to live with Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome, I have found that the following strategies often help me:

1. Find a purpose. When I am working towards something I feel really passionate about, I feel good in my own skin.

2. Give. When I am doing something for someone else, I can’t help but feel better about myself.

3. Have a sense of humor. Find a way to laugh at yourself. If you have to wear the horribly, ugly compression stockings that roll down the minute you get them on because they help you stay upright longer, make a joke about how sexy they make you feel.

4. Once in a while, get dressed up and strut your stuff. This year I have worn more dresses to school. When people comment that “I’m so dressed up,” I usually just shrug it off… but in the back of my head, I am more often than not thinking about the year I could not work and became so sick of the same few pairs of yoga pants I wore day in and day out. At times, you should not underestimate the power of a beautiful pair of earrings or a new shirt.

5. Accomplish a goal. Nothing makes me feel more in control of my body then when I accomplish something I have worked hard for, or even fought for.

6. When people tell you, you look great try saying thanks. And then believe them. They usually mean it, and are speaking out of love and kindness. This is something I continue to work on.

7. Do something for your body. Believe it or not, I have come to realize that it is not my enemy. It is begging to be loved and cared for; especially during my sickest times. Eat healthy. Drink a lot of water. Make a lifestyle change. Take a nap. Strengthen muscles… even if you have to lie on the floor to do so. I believe there is always some kind of exercise you can do to help your body.

8. Sleep and rest. Sleep is my best friend. I feel the best after I’ve had plenty of rest. People who know me best, know not to mess with my sleep.

9. Surround yourself with positivity. When you are around people who bring out your best self, it is hard not to let your light shine through.

10. Finally, practice positive self-talk. We are our biggest critics. Give yourself a break once in a while and tell yourself you are beautiful. This is the body you have for life. You can either choose to hate it or love it. Find the beauty within and love it to the core.

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My Fight to Bring Awareness of Autoimmunity to SXSW

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We all want to be healthy.

But the reality remains, many people are not well. Millions teeter precariously on the edge between health and chronic disease: for example, obesity, diabetes, cancer, cardiovascular and 100+ autoimmune diseases.

So why do recent health trends emphasize wellness and fitness more than preventing or managing disease?

This was the issue glaring enough to bring this clinical dentist, Wall Street analyst, and mother of four to jump headfirst into yet another full-time career, after having cycled my way through at least seven others.

My journey to autoimmunity activism started out as a personal mission. I draw my passion and sense of urgency from a desire to prevent disease in my grandchildren. My family, extended family, and close loved ones all struggle with autoimmune diseases. With vague but troubling symptoms, their attempts to find diagnosis and treatment have been disappointing.

I soon found that this was not just the case for myself and my family, but for millions of others as well. Autoimmunity remains vastly under-recognized and underserved:

  • Approximately 16 percent of the US population have an autoimmune disease. That is about 50 million people or one in six Americans.
  • As of 2014, on average, it takes autoimmune patients 3.5 years and five doctors for a diagnosis, while 51 percent are labeled as chronic complainers by their healthcare providers.
  • Despite affecting more people than cardiovascular disease and cancer combined, autoimmunity receives less than six percent of NIH funding.

After seeing the innovations in digital health and the possibilities they present, I could no longer sit on the sidelines and watch as my family and millions of others struggled.

Over the past few years, I have been able to use these advancements in technology to help raise awareness of the invisible autoimmune epidemic: From documenting the lonely voices of those struggling with autoimmune disease, to painting an in-depth portrait of the burden of having to coordinate your own health care, to championing self-care as a tool for disease prevention, we are building bridges across the abyss of slow diagnosis and disappointing treatment.

We took a giant leap towards creating a digitally connected world of personalized care for autoimmune patients in 2016 by bringing this mission to the expansive, imaginative audience of SXSW. Our expert panel, Hacking for Healing, shared solutions for helping chronic disease patients understand their symptoms and guide treatment via new data and wellness services.

However, it remains true today that most of the available digital tools still target the already healthy, while the pool of resources drastically decreases for those who are not quite healthy and not quite sick.

Now, more than ever, is the time to highlight the 50 million autoimmune disease patients who need improved personal care on the global 2018 SXSW stage.

new customized digital tools for optimal health graphic

Our 2018 panel focuses on three innovative companies that have developed new personalized tools for wellness that may also help the chronically ill: Nuritas, Vitagene, and Seed.

I invite you to join us on this journey to bring personalization to healthcare by voting for our 2018 SXSW panel between August 7th and 25th. With your help, we can save millions.

Learn more from my curated collection of scientific autoimmunity resources.

Explore my timeline of progress made since 2014 in reversing the invisible epidemic of autoimmune disease.

 

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When My Illness Demands That I 'Micromanage' My Body

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In the six weeks since I’ve sprained my ankle, I’ve become aware of what every muscle and joint in my foot is used during particular movements. Mainly due to the pain I feel in particular areas of my foot when I’m walking at varying speeds, moving up and down stairs, driving, etc. Obviously I have to consciously avoid movements that cause pain so as not to slow down my recovery. But what I realized in this process is that I already have to do everything with conscious effort to avoid injury or illness. Having a chronic illness demands micromanagement of my body.

Lately my medications haven’t been working at maximum efficiency, so as a result, a lot of symptoms have been worsening. My tendons and muscles are not working properly, leaving my joints unsupported, especially small joints in my hands and feet. This is probably contributing to my slow recovery from my sprained ankle, but also requires me to use my hands differently.

Not too long ago, the fingers in my right hand gave way when I was holding a backpack. That’s it. Nothing special. In fact, it took my a while for me to figure out what the heck I had done to my hand. I heard a loud crack, and then my hand turned swollen and bruised. That was the signal that my symptoms were progressing and I had to add to my list of things to think about. Everything from opening jars, to pouring milk now requires careful consideration. How can I perform this action in a way that cause minimal injury to my hands?

But this is just the latest in a long list of things I have to manage. Should I book that two-hour tour in Hawaii, because what would happen if my colitis flared up in the middle of the tour? I’m pretty sure there are no washrooms on the trail. I can’t read when I’m commuting on the train because the stiffness in my neck makes it incredibly uncomfortable to look down for that long. I avoid touching and railings or handles in public spaces because my medication leaves me with a severely weakened immune system, so one wrong move can leave me suffering from an infection for weeks. I have to develop strategies for sitting still for long periods like in a movie theater off on a flight, which usually involves more medication. I can never leave the house without sunglasses because the eye inflammation makes me seriously sensitive to light and can cause migraines otherwise.

So now with my new symptoms, I get to think twice about how I pull laundry out of the washing machine, how I plant my feet going down the stairs, how I carry my backpack. Not only does chronic illness involve debilitating fatigue, but this level of thought required for every action is mentally exhausting. All of this is in addition to managing my family of five.

So dear friends and family, I’m sorry if I don’t like going out after work or driving far away for a great restaurant. I’m worried about having energy for my next day at work or having a bout of colitis from the restaurant meal on the long drive home. And I’m exhausted from all of the micromanaging.

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The Daunting Task of Finding a New Doctor After Moving Away

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Having a chronic illness, we rely so much on our medical team. We visit them on a regular basis and they become someone we can talk to about anything. They know our fears, our illnesses, what medications work and what doesn’t. The general doctor or primary doctor works with all your specialists and ties them all together.

So when suddenly you move away from your trusted doctor and have the task of finding a new doctor, it can be quite daunting.

Do we wait until it’s necessary to see a doctor, or do you start visiting clinics until you find one that you feel you can work with?

It’s so scary going to see a new doctor. Will they know how to manage my conditions? Will they be one of those doctors where you’re in and out before you even blink? Or will they sit and listen and make notes so you don’t have to repeat yourself next time you visit? Will they think the medications you’re on do nothing, or will they not believe in them? They might even think you’re on too many medications.

There is so much to think about. If we voice these concerns to those who don’t have chronic illnesses, will think we are being too picky? After all, a doctor is a doctor. They all have the same training, don’t they?

Those of us with chronic conditions need a doctor who will listen. Who will understand that we know our bodies and will be prepared to work alongside us.

If we have a few conditions, they need to be able to help us manage all of them not just some or one. If you have a rare condition and the new doctor knows all about it, do you trust your gut and go with this one? Or do you keep searching?

Some of us travel hundreds of miles just to keep in touch with their doctor as the whole thought of finding another doctor is just too hard. Being unwell can take all the energy to just get through the day, without having to find another doctor.

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