Crohn's disease

What It's Actually Like Living With Crohn's Disease

Date: September 25, 2018 at 7:02 pm- by Ali- Comment(s): 45

I wrote this last night when I was feeling, let’s say, a bit overwhelmed. I’d had a particularly exhausting day, and maybe it was the Crohn’s disease or the fact that I’m now nine months pregnant and am very aware that life is about to change — I don’t know. But I did some writing. The kind of writing I didn’t really intend to share, but then thought, that’s the kind of writing that tends to matter and should, perhaps, be shared. So here you go. It’s wordy! Late-night writing at its most vulnerable! 

I woke up officially around 5 AM today. But really that’s just when I decided it was an acceptable time to get myself out of bed. In reality, I had been up all night — tossing, turning, and running for the bathroom.

I probably ate too much for dinner last night. I should’ve eaten earlier, and less, but that doesn’t always happen. So I went to bed with a full, uncomfortable belly. I knew it probably wasn’t going to be a restful night for me. But I curled up with my pup, arranged my pillows just right, and eventually dozed off. I have no problem falling asleep most nights. It’s staying asleep that’s the problem.

And I didn’t stay asleep last night. I had terrible gas pains, and the thing about gas when you have Crohn’s disease is you just can’t trust it. So any time I feel like I need to release some gas, I have to run to the bathroom and do so in there, on the comfort of the toilet seat. If I don’t, I risk having an accident, and I’d rather not literally shit the bed.

So I spent hours repeating that routine: toss, turn, bathroom, gas, return to bed, can’t get comfortable, back to bathroom. Add a nine-months-pregnant belly (and bladder) to the mix, and we’re not exactly talking “sweet dreams” over here.

Which is why, at 5 AM, I decided to call it. I was up. I played on my phone, I read some emails, I stood in the living room looking at the skyline. But mostly, I hung out in the bathroom, with my feet firmly placed on my beloved Squatty Potty. I sat there as I played level after level of Two Dots. I’m on something like level 1700 at this point. And considering I pretty much only play this game when I’m in the bathroom, that tells you just how much time I’m spending in there. (I’m not that good at Two Dots.) At one point, I was in the bathroom for so long that when I went to stand up, I nearly toppled over. My legs and feet had fallen asleep.

A day in the life with Crohn's disease

Trying to appreciate the beauty instead of wishing I were out running underneath that beautiful sky.

Mornings with Crohn’s disease, for me, are a nonstop, incredibly urgent parade to and from the bathroom. My stomach is at its most active right away, so morning runs and sunrise walks are a thing of the past. That sucks because those are my favorite things. I don’t remember the last time I was out on a run at sunrise. Or out on a run outside, period. Instead, I sit on the toilet until I think I’m done, and then I get up and attempt to have breakfast or get some work done, but I’m often running right back to the bathroom. And it’s urgent. It’s always urgent. Sometimes I get steps from the toilet but I’m not close enough, and I don’t make it.

Few things in life are more discouraging, disheartening, and embarrassing than having a toddler-style accident in my own apartment, steps from my own toilet. It feels pathetic. I am 33 years old and sometimes I poop my pants. It is my least favorite thing about myself. That, and that I’m really, really, exceptionally prone to bug bites.

Eventually, my stomach felt somewhat calm and I was exhausted, so I crawled back in bed with Ellie who, at 6 AM, was obviously still sleeping. I fell into a deep sleep pretty immediately, only to be awoken minutes later by Brian leaving for work — and then a few minutes after that by my alarm. So my attempt to catch up on at least a tiny bit of sleep was thwarted.

I worked in my office for a bit until Ellie woke up, and then it was up to me to take her for her morning potty walk. When Brian is around, he does this, which is a HUGE help, since my stomach is so unstable and unpredictable in the mornings. (Actually, it’s completely predictable: I predict that it will erupt, and it always does. I just can’t control it.)

And here’s what happens every single time I take Ellie out mid-flare: First, I go to the bathroom to try and make sure my stomach is totally empty (which it never seems to be). Then I go “just one more time.” Then I put on Ellie’s suit (her harness) and leash her up and she stands there, excited to be going outside, and then, just as I’m about to open the door, I need to go again. And so the poor pup stands there, with her outfit on, wanting to go out, staring at me while I do what she wants to do. And I sit on the toilet, apologizing to her profusely while, sometimes, crying because I feel so guilty. She wants to do something so simple — go outside and get fresh air and smell stuff and go potty — and I can’t even do that for her. And it’s only 7 AM.

A day in the life with Crohn's disease

PLEASE PLAY WITH ME!!!

When we finally made it out this morning, all I could think about was my stomach. I couldn’t appreciate the amazing, fresh, crisp fall air, or the cool breeze, or the fact that I was wearing a big sweatshirt and was so cozy. Instead, I was constantly darting my eyes around to see where there were people and where no one was standing, in case I needed to run into the very few bushes surrounding our building. I looked up at the three buildings Ellie and I stood between, wondering if anyone was out on their balcony with their morning coffee, people watching — anyone who would witness if I had a very public accident.

That’s something I worry about a lot. We live in an age where people just adore taking photos and videos of total strangers and posting them online. Public shaming, yay! I am terrified I’m going to have a Crohn’s-related accident in public, and that some asshole is going to think it’s funny or gross or otherwise worthy of sharing, and I’ll become a viral sensation for shitting myself, or pooping behind a bush somewhere. It’s a paralyzing fear for me.

I managed to walk Ellie for a minute, all the while consumed by thoughts of, “Is my stomach OK now? What about now? Still OK? Deep breaths, Feller. You got this.” I’m constantly giving myself pep talks when I’m not immediately near a bathroom. This morning, it failed me.

If I were to walk into our apartment building through the lobby and to take the elevator up to our floor, I’d be in our apartment in about four seconds. It’s very convenient.

But building management recently decided the lobby is NOT, in fact, dog-friendly (rude!), and that people with dogs must use the service entrance on the side of the building, and then take the service elevator upstairs. (There is only one service elevator, as opposed to several regular lobby elevators.) This is as far as possible from the lobby, and as far as possible from our apartment. Normally that wouldn’t be a big deal. But for me, with this urgency-related disease, it means tragedy is more likely to strike. And today it did. We were waiting for the service elevator, and as I waited for it to come down from the 7th floor way too slowly, I knew I couldn’t wait. I ran back outside with Ellie (not sure what that was going to accomplish), and we just barely made it outside when it happened. I’ll spare details. It wasn’t that bad, but it wasn’t good.

This brings us to 7:20 AM. An hour when many people are still asleep — or some are just finishing up their beautiful, Instagrammy morning runs — and I’ve already spent nearly 2.5 hours focused solely on my bowels and my growing collection of dirty laundry.

A day in the life with Crohn's disease

This view always makes me feel a little better.

Being inside the apartment, at least I’m calm. My stomach may be crazy, but I’m home. I have bathrooms, I have privacy, I can relax.

Every time I go outside is the same, though. If I go to an Orangetheory class, I often have to use the bathroom in my building lobby, because I can’t always make it from my apartment to my car panic-free. The drive to OTF is fine — when I’m in my car, alone, I’m relaxed. I keep a towel on the front seat of the car “just in case,” and that comforts me. It’s like a security blanket, and it works and helps.

I’ll sometimes go to the bathroom once I get to Orangetheory, but I’m relaxed there, too. There are three bathrooms, and it’s extremely rare that all three are occupied at once. And if something bad happens, I can just leave. Not ideal, but I always have an exit strategy and a bathroom plan.

Then, throughout the rest of the day, it’s a lot of sitting at my desk, going to the bathroom occasionally, and repeating the same routine of taking Ellie out, panicking, and sometimes having an accident. Today, I had more than one, all within a 10-foot radius of my own front door. I’m not proud of that. I hate that.

It happens when I’m about to record a podcast, too. It’s silly, since I’m at home and the conversations are over Skype and they aren’t even video calls. But in the moments right before we record, I’m often running to the bathroom constantly. I know it’s partly mental. I’ve tried finding ways to keep my brain at bay, but I’m not always successful.

Then, on this particular day, I was feeling sad, exhausted, and defeated, and was really hoping Brian would be home to take Ellie for her nighttime potty walk. She admittedly got next to zero exercise all day, which I hate. She’s a high-energy dog. She loves to be outside and play, and I love nothing more than to do those things with her when I can. It’s one of the many reasons I love being freelance and working from home. But right now, I just can’t. I can’t even take her out to pee without having an emergency of my own. I definitely can’t get her the exercise she needs, and I don’t want to send her to daycare every single day. So I do my best. And today, my best really sucked.

A day in the life with Crohn's disease

PLEASE STILL LUV ME, ELLIE. I’M TRYING.

I felt so guilty by nighttime. She was restless, and as 10 PM neared and Brian wouldn’t be home for a while, I knew it was on me.

Ellie’s nighttime walk was fine. Short, but fine. When it’s dark out, I’m more relaxed, and being relaxed helps. There are more dark corners I can duck into if needed, and there are fewer people outside with smartphones ready to take a photo they think is hilarious and innocent but that could ruin someone’s (my) life. (Dramatic? I don’t really think so. It’s a legitimate concern here in 2018, sadly.)

Ellie and I made it back in, accident-free. I even survived waiting for the freight elevator to come down from the 10th floor. Now, we’re in bed, and I’m sitting here feeling guilty that I was a bad dog mom today, and stressing over how in the world I am going to take care of an infant and a dog and myself. I clearly can’t even take care of myself right now. These thoughts consume me.

I want to be crushing my career right now. I don’t want to be spending so much mental energy thinking about poop. And I want to be doing what everyone keeps telling me to do, which is de-stressing and relaxing and treating myself in these final weeks before the baby arrives. But I can’t relax. If I’m out and about, I’m stressed and anxious. I can’t even go to Target without having a near panic attack, because the restroom is all the way in the back corner of the giant store, and that walk feels like a marathon when I need it.

All the little things most of us take for granted every day — waking up and doing whatever we want, going for a run, going for a walk, walking our dogs, commuting to work, sitting in a meeting — those are things I cannot do when I’m flaring. My bowel movements consume my thoughts and take over my actions. They dictate what I do and, sadly, what I can’t do.

A day in the life with Crohn's disease

STILL LUV U, MOM.

I hate having limits. I want to do whatever I want, whenever I want. I want to spend all day every day outside with my dog. I want to go out to lunch with people I think are cool and I want to talk about their careers and learn about their lives. I want to go out with my friends. I want to be engaged in conversations instead of constantly staring at the closest bathroom and counting down the seconds until the person who just went in there leaves. I won’t even go to places that only have one bathroom (which eliminates most NYC establishments).

This disease is exhausting. Physically, it’s draining. Emotionally, it’s…whatever word means more than draining or exhausting. Factor in being 36 weeks pregnant and it’s tough, man.

If you know someone with Crohn’s disease, whether it’s a colleague, a loved one, or a semi-stranger, I urge you to be compassionate. I’m so open about this disease, but there’s still so much people don’t see and that I don’t share. I’ve lost friendships over this disease. I’ve missed so many things I’ve wanted to be at, and I know that many people in my life think I’m a total flake for it. I say I’m going to be at things, and then I bail in the final moments, not because I don’t want to be there, but because I’m either too sick or too anxious about maybe getting sick while I’m out (translation: pooping my pants in a crowded bar because there’s only one stall and there are a bunch of drunk girls in there taking their time).

I do my best to stay positive with this disease. I remind myself that each flare is temporary. But over the past few years, the flares have lasted longer than the remissions. I try not to compare the two timelines, but it’s hard to remember the last time I was healthy for, say, a full training cycle. I was hoping to get through this pregnancy flare-free, and after a solid first trimester, things were looking good. But here we are. Flaring for the second and third. Flaring with a baby just a few weeks away.

I live with constant guilt. For as much as this disease affects my life, I’m tirelessly thinking about how it affects everyone around me. How, for Ellie, it means I can’t take her out to play, even when she gives me her saddest eyes. How, for Brian, it means I’m not a very good wife. Even when, mentally I feel OK, which I have this time around, I’m certainly not a sexy wife, and I rarely want to go out to dinner or away for the weekend because I’m uncomfortable being anywhere but home. How, for my friends, I’m never around. Yeah, I’m OK at texting, but I truthfully never make an effort to see them because I hate going out in public or leaving the comfort of my apartment. I isolate myself so I can be comfortable, and in turn, my relationships suffer and so does my mental health. But I haven’t found a solution for that.

I have no idea what my life will look like when this baby gets here. I’m hoping that the baby will come out, the placenta will come out, and whatever is causing this flare will come out, too. I want to enjoy life with a newborn and all the changes that come with it. I don’t want to force my hungry baby to wait to eat because mom couldn’t get herself off the toilet. (I know there are solutions to all these things. I know I can pump, have bottles ready, etc. I know. I know.)

A day in the life with Crohn's disease

Love this. Even on my toughest days.

Now, it’s 11 PM and I just want a good night’s sleep. In reality, there will probably be some tossing and turning. I’ll wake up when Brian gets home, and I’ll need to use the bathroom a few times. I never just go once. Every time I switch positions in bed, my stomach jostles and I need to go “just one more time.”

Ellie is asleep at the foot of the bed, and I can hear her stomach rumbling, and that terrifies me. I’m afraid she’s going to wake up and run for the door, needing to go out urgently. And I can’t blame her — that’s my entire life, after all. But for me, it’ll mean getting dressed and getting out the door equally urgently. It’ll mean making it down several flights of stairs accident-free, walking her accident-free, and then waiting for that damn freight elevator, accident-free.

And then in the morning — whatever time that is — I’ll make sure the toilet paper is fully stocked for another day with Crohn’s disease.

Posted in Crohn's disease and tagged -

45 Responses to "What It's Actually Like Living With Crohn's Disease"

Oh, Ali… my heart hurts for you. You are so brave to be so open about this horror you deal with every day, but how it must help others going through the same thing but unable to share! Guilt changes nothing, except to bring you down. None of this is your fault and you’re doing the best you can. Give yourself a break!❤️

This is so my life…ugh girl I can relate 100%. Although I felt good during pregnancy and terrible after so I pray you get relief when this little girl arrives.
Also, I realized most Targets have two bathrooms. The main one and usually one by the pharmacy. Might be worth checking it out!!

Sadly no front-of-store or second bathroom at my Target — trust me, I’ve checked! (Always checking, right?!)

I’m so sorry this is your reality. I can’t imagine the anxiety you describe, and I say that as someone with an anxiety disorder. I know there’s nothing I can do to help, but I guess I wanted you to know that I read this post, that I listened to what you are saying, and that I’ll take this with me as a reminder to always strive for compassion towards others first because I can’t know their stories or what they are dealing with.

I hope when your daughter arrives, the flare you’re experiencing ends, though I know even if that happens, the anxiety might still linger. I know for sures that you are going to be an amazing mother and your daughter will know compassion by your example and will know drive and passion and authenticity because her parents live those qualities every day.

Sending you love from far away.

Thank you so much, for all of this. <3

This. Is. So. Real.

#truth

I am so sorry, Ali! I can only imagine how hard it is for you.
If this offers any comfort, you have helped me to be more patient and understanding with my husband. He has undergone radiation treatment for prostate cancer and the side effects are so very similar to your crohn’s flare. Thank you so much for being so open and honest!
I hope that this flare ends with the birth of your daughter and you are able to feel healthy and confident and enjoy every second with her.

Thank you for your openess and for being so brave. I’m a long time reader and love your podcast, too! I do not struggle with Crohns, but I have two people very close to my heart who do. I always look to your story as a means to understand, in any small way, their daily struggle. So, thank you!!
You are a ROCKSTAR dog Mom and you are already a ROCKSTAR infant mom! Never doubt it!! A couple notes: 1. Newborns love to sleep and stay in one place a LOT. 2. I’ve definitely nursed babies while on the toilet….. 😉 xoxo

Thank you for sharing, it takes strength! 35+ years with crohns and all I can say is I take it day by day. It’s all I can do for my own sanity. Good luck with your new baby and stay strong!

I can relate SO much to you. I have followed your blog for a while now. My whole life is about memorizing the location of every single bathroom. I have been tested for all possible IBD illnesses only to get the blanket “IBS” diagnosis. I live in pain, keep extra clothes in my car, and all of the things you describe just have me shaking my head in agreement. Once my daughters came along, I am literally unable to go in public without my husband because I have to be able to ditch him with the kids and run/clinch/waddle to the bathroom frequently. All this to say, you aren’t alone.

Michelle Griffith says: September 25, 2018 at 8:35 pm

Thank you. You’re so brave. Life with Crohns is awful. There’s always “something”. Please know that you’re not alone in this battle. There are others out there and we hear you!
Hugs from North Carolina

Kristen Meyer says: September 25, 2018 at 8:37 pm

I have been following you for a year and having a tough month since I started back at work in September. I drive my son to catholic school in the am and we have been making bathroom stops at the church every morning. I blamed it on my son that he needed to go badly. He has watched me go to the bathroom every morning and he is 6. Today I cried becuase I got to work and just want to have a normal morninh. Not wake up 2 hours early to make sure I won’t have an accident when I drive. I feel your pain. I hope this crap gets better! 🙂

Your podcasts and blogs have literally made me feel like
1. I’m not alone
2. What I’m going through is normal.. my thoughts and emotions and periodical depression we with crohns seem to seamlessly slip into occasionally when it’s been a bad day, week, or month and finally
3. Somebody out there actually gets it.. they actually understand.
I hate being a flake. I hate being excited for things and then because of the excitement (yes I get crohns flares from just being too excited lol) or the anxiety I just can’t do it. Sometimes I’m just literally to freaking tired to move.. to get out of bed.. to try and be an adult and a living person. Sometimes I’m just too exhausted and want to lay in bed and rest all day. Nobody understands that while I’m 100% healthy (minus crohns) and I look healthy and alive I’m terribly indescribably exhausted ALL THE TIME. Lol do you remember what it feels like to not be tired all the time? It sucks to constantly be on the lookout for bathrooms. I keep poo-pori or however it’s spelt in my desk at work because who knows… who knows when I’ll have to run to the bathroom. Then you get back to your desk and it’s like “where were you? Why were you gone so long” I’m lucky my supervisors are pretty understanding but it’s embarrassing. Like you, I am extremely open about my disease and my struggles BUT that doesn’t mean we don’t get embarrassed by things. As shitty as it is to have Crohn’s disease it’s super comforting to know somebody else is out there and going through the same thing. I would never wish it on anybody and I’m sorry you have to go through it but just know that your words are touching others. You have certainly helped me get back on my feet a time or two.

My husband has Crohn’s and I remember how anxious he was when our daughter was born. He was so afraid he would be less than due to his bathroom visits. Our daughter is now almost three and he is the greatest father ever and always manages when he’s alone with her. He has even used her little portable potty on occasion! 🤷🏼‍♀️ You will be a great mama just as you are to Ellie. ❤️ I wish you some wellness very soon!!

Love to you! A friend of my has RA and experienced those symptoms during pregnancy which was not ideal. My brother has chrons but also epilepsy, so we can’t communicate and understand his symptoms, so we just try to take him to the bathroom every 90 minutes. there’s a lot of laundry in our lives. (or rather my mom’s life). I really appreciate all the sharing you do, particularly the details! Thank you!

I needed this article. I am struggling so much with my crohns right now, praying that Humira will work for me, and this honest blog post came at just the right time to explain to my boyfriend what exactly i am dealing with. Thank you for your honesty, you are such an inspiration and i cannot tell you how grateful i am for your honest crohn’s posts. 🙂

Not to make light of anything BUT you can nurse the baby on the potty too. I’ve had to poop while my 8 month old is nursing and I just take her in there! Not pretty but it works. Thank you for the raw, real post. you’re going to be a great human mom just like you are a great doggie mom ♥️

Ally, I love your blog and I love your honesty (and I love you but is that weird?!) You are so strong and caring, and a great role model. I am sorry that you’re going through all this – I can’t imagine what it’s like.

No matter what happens with Crohn’s, your child is going to be so lucky to grow up with you as her mother. You’ll be a great mother and will continue to be a great inspiration for any of us who struggle with chronic diseases (even those who don’t, I’m sure).

Thank you for this blog post. I know it wasn’t easy to write, admit, publish to the world, and I admire that strength and courage so much. ❤️ Dogs also know you’re doing your best – Ellie will always love you!

Also, wtf at your building management and the “not pet friendly lobby” 😒🤨🤬

Hi Ali, fellow Crohnie here also prone to bug bites 🙂 Thanks for sharing all of these struggles you go through. It makes me feel like I’m not alone! Best of luck to you with your baby.

hi ali — i’ve followed you for years but rarely comment, but want to say i respect you so much for this, and am so glad that you posted it. i’m in graduate school becoming a clinical psychologist, and work with many people with chronic pain and illnesses, and i think the more that you talk about it the better it is for everyone — you are shedding light on experiences many people are ashamed of, and that itself is so brave <3. i also would urge you to (and you may be working on this or have in the past) reframing some of your thoughts around guilt, blame, and "good" vs. "bad." you are not a bad wife, or a bad dog mom, a bad friend, etc. you are doing the best that you can, and you are caring and loving and are worthy of everything someone who doesn't have these same struggles is. just a thought for you this tuesday evening. also, your podcast rocks. and your dog is adorable:).

Ali,
I’ve been reading your blog for years (I love it, it’s the only blog I follow), but I’ve never commented before. I always feel like I can really relate to your Crohn’s post since I have UC, however this post was like OMG this is exactly the story of my life. The anxiety about the bathroom is insanely overwhelming. It’s gotten to the point that it’s become a habit for me to worry about the bathroom anytime I leave the house that I still have anxiety about it even when I’m in remission. Anyways, currently in the hospital now for a UC flare or possibly a GI infection (waiting for my culture results) and figured I would comment since I feel like you are like reading my mind when it comes to this IBD stuff. I love that you’re so open about it (which I have a really hard time being), and I often send links of some of your posts about Crohn’s to my family to give them a better understanding for what it’s like to live with. I also really been enjoying your pregnancy posts, they’ve been really fun to read.

Your blogs about this disease surely are helping people. I have a different condition—not nearly as severe but bathrooms are always a necessity. If you could, see if you can move to a house with a fenced in yard. I know, NYC. But Ellie could just be let out and it would take a huge burden off you. Wishing you, Brian, Ellie and the baby the best. PS. I don’t sleep either. It sucks.

I’m sending so much love to you Ali. Thanks for being so open about your struggles. While I don’t have crohns, I do have random periods of GI distress, so I know where ALL the portapotties, bathrooms, and “big” foliage are located on my running routes. I dread the onset of winter, because in my city, the portapotties are removed once the weather is frosty (and the “big” foliage becomes skeletal)…Keep the faith that this flare shall pass. *hugs*

Sending lots of hugs and love to you. You are so strong and you will certainly pass this strength to your daughter. Don’t beat yourself up with all the guilt. It’s not your fault and you’re dealing with this disease as best as you can.

My heart goes out to you. What a rotten time to be having a flare. I’m convinced you’re right and once you give birth this flare will pass. Such a huge change going from pregnant to not pregnant. Aspects of a person’s health seem to change like the flick of a switch.

And if it doesn’t there is always that life saver, the sling so wherever you have to dash you don’t need to worry about grabbing the baby or manoeuvring a stroller.

Ali, thank you so much for being so brave and open with your struggle with this disease. My Mom suffers from it as well and reading your posts throughout the years has given me such insight into what she deals with and it has helped tremendously. I have sent her the link to this post as I know she will relate to every word and I want her to know that she is not alone in her suffering. And please know that you are a great dog Mom to Ellie and you will be an amazing Mom to your Daughter. Much love to you!

A friend sent to this me – and wow your experiences mirror a lot of mine right now! I’m 38 weeks preg and in the middle of a flare and the struggle to be around a bathroom right now is so real. If you subbed your dog responsibilities for a toddler – I feel so guilty when I have to take her to the bathroom multiple times a day and she’s so upset about going to another “potty” for mommy! The target line – it was like you were in my head. I hope you know you aren’t alone – Crohn’s has shaped how I parent so much in good and hard ways. I’ll be cheering you on!

Loved this post. It is so real. I wish though that Crohn’s was not a thing and couldn’t cause you so much heart ache and anxiety. This post was very eye opening and I’m so sorry you have to deal with it, especially when a baby is coming so soon. I can relate to just that anxiety as my baby is due about the same time. I hope your flare ends, and I hope your disease goes into remission. Sending love.

Please know there are many folks cheering for you. I cannot relate to what you’re going through, but I wish you nothing but love and enjoyment as you start your journey as a mom (to a human). You are an incredibly strong person. Your daughter is already so lucky to have you. Sending lots of love from MD.

Thank you for sharing this. Thank you for your vulnerability. I know it makes the world a better place to live in because reading everything you write about Chron’s has made me more compassionate, more kind and more patient, and I’m sure it has had the same effect on all those who’ve done the same. Whatever happens, your daughter will be lucky to be raised by a mother like you. Sending big hugs and wishing you an as-calm-and-boring-as-possible end of pregnancy.

Ali, I have been reading for several years. But have never posted. I too have crohns, although not nearly as severe as yours. I also have at several other auto immune related diseases under my umbrella. (I keep telling the doctors that I have enough, there is no more room under my ‘umbrella’!) Anyway, I don’t have a ton of time and don’t have time to look through all the comments, so this may be a repeat, but have you considered the adult diapers. I know it sucks. But if it were me, i’d wear a loose flow-y dress and when I had to go out i’d put one on, it would be my security blanket (much like your towel in the car). Just a thought.

Thank you for this post and sharing on what it’s like to live with Crohns. I had no idea. Also, if we lived closer – 100% would volunteer to run/walk with Ellie for you!

Ali, this makes my heart ache for you. I know these days – I have LIVED these days (I guess lived isn’t an accurate term – I survived these days?).

Thank you for sharing your truth – this is such an accurate depiction of a day in the life for so many people, including myself.

The guilt, the shame, the frustration, the pain, and the sheer quantity of shit an “empty” GI tract can put out is maddening. In case you need to hear it from someone else, I grant you permission to let it all go and grant yourself some grace. Because you deserve it.

This is why I fundraise for the Crohn’s & Colitis Foundation, why I advocate for those of us living with these shitty diseases, and why I share my own experience as well. I’m not giving up until we have a cure.

Sending you love from Pittsburgh! <3

This is really timely and I thank you endlessly for sharing. My boyfriend has Crohn’s and for the year+ we’ve been together I’ve learned a lot about what it means and what he has to go through, but he’s rarely as candid or as open as this. We recently got into an (extremely rare for us) argument when we were on vacation in a foreign country and in a large square crowded with tons of people and he just bounced to find a bathroom, without so much as a tap on the shoulder to me. I was all of a sudden standing there alone with no way of contacting him or vice versa, since our phones weren’t on, and no clue where he went. When he returned a few minutes later, I was upset for being abandoned, and he was upset for thinking I didn’t understand the urgency of the situation. I am working on being as supportive of a partner as I can, even in situations when I don’t totally know what’s going on, and he is working on being more open and letting me know when he’s hurting or having trouble. It’s a constant work in progress but I am just trying to be as empathetic as I can, even though I’ll never truly understand what it is like.

Sending you a big hug and all my love and best wishes!!! ❤️ Just remember this – you are doing the very best you can and will do your very best after your little one arrives. If that means nothing except cuddling, napping, eating and going to the bathroom all day for the first few months than that’s what it means. And for the record many moms without other health issues spend the first few months that way!!

I recommend getting as much help as you can/outsource as much as you can for the first few months. I had a bad autoimmune Graves/hashimotos flare after my first daughter and then again this past winter with my 4 and 1.5 year old girls. I had my husband do preschool drop off whenever possible and my mom pick up when I couldn’t. I ordered pea pod groceries when I knew that I’d either pass out in the grocery store or have a panic attack that I was going to. I took a step back from other commitment and said no to so many social events. But I did my best to keep my girls happy at home and in our yard with ‘spa nights’ and snow play time while I sat on the porch and hot cocoa after. If I could swing a walk we’d just stay within a block from home if I got too tired.

The newborn stage is demanding but all the little one needs is love and cuddles from you and your husband. The other stuff is just extra. You can do this!! ❤️

Thanks for sharing! So sorry you are going through this for so long. I hope it all improves for you when the little one arrives. I’ve had stomach issues (not Chrohns) on and off since I was a kid. I’m like you, I can fall asleep but wake occasionally (depending what I had the night before) with those gas pains, too.

I’ve been reading your blog for years. I discovered it right after I was diagnosed with Crohn’s. Reading your very real experience has always been helpful for me. You will be a great mom and have no doubt you will figure it all out and how to deal with Crohh’s at the same time. Enjoy all the moments. Being a mom is awesome!

Thank you so much for deciding to share this! I have had Ulcerative Colitis for quite some time now and this honestly made me cry. You really hit the nail on the head and I LOVE how open and honest you are with what people with these diseases deal with on a daily basis. While of course I wish you weren’t mid flare, it’s nice to see that we’re not alone.

Sending you many hugs and all of the positive vibes —hope this flare calms down as soon as the baby arrives! You will get through it!!

Thank you for sharing this. Sending all of the positive and anti-anxiety vibes your way. I don’t have Crohns but I’ve been flaring with my version of inflammatory disease since June and can relate to so much of what you said. Canceling things so people don’t ask about my skin, running alone instead of with a group, freaking out about how I’m going to make it through the work day when I should be killing my career because I sit in meetings trying not to call attention to wanting to rip my skin off. Lack of sleep. Feeling unattractive. It’s depressing and isolating. My heart goes out to you and I’m hoping that remission is in your near future.

So much respect for you Ali! I can’t imagine dealing with all of this. But I would like to encourage you to try and cut yourself some slack when it comes to the guilt you feel as a result of something you can’t control. When your little one is here, there will be plenty of things to feel guilty about trust me (you weren’t patient enough that day, didn’t snuggle enough, didn’t teach her enough, didn’t do enough tummy time, etc etc). It can consume you, but in reality your baby and Ellie will be FINE and HAPPY! You love them like crazy and that is the most important thing! The guilt we feel is so self imposed and can strip us of the joy of being a parent. Much love to you!

DiagnosedWithCrohns says: September 28, 2018 at 11:38 am

Thank you for writing this. I have the disease and the impact on one’s mind much less the physical strain is a daily challenge. Do the best you can one day at a time. I’ve had to unlearn my life and the speed at which I once was able to live it. Now I am a one day at a time person living in the present or at least I try. I find comfort in that and it helps to relax me a little, but it is one day at a time.

Try to stay positive and be kind to yourself!

Relating to so so much of this. It’s so difficult to put yourself out there like you do, but please know how many people you are helping to not feel alone in this disease. The constant worrying and panic are all too real. I dream of days where I can go back to leaving the house in a normal amount of time, and when I can go for a walk outside. Running outside is also one of my favorite things to do, but at this point I haven’t run outside for at least months (and over the past 5 years probably a total of 15 times), I haven’t been truly exercising in about 2 years (and I really like to!). It’s too much work and 99% of the time, I just don’t have the energy or the mental capacity to put myself into that situation. It’s hard for anyone to truly understand if they haven’t live it. I wouldn’t wish this disease on anyone, period. It’s life-altering and not in the good way. I am praying that your body can readjust once baby girl is here and that remission is right around the corner for you. You are so incredibly strong and inspiring <3

Oh Ali, this just makes my heart break. You are so genuine and such a positive person. I hate that you are feeling all this anxiety and negativity. You are a great dog mom and you are going to be an AWESOME mom! I do not have Crohn’s, but have family members that do. I see how hard it is on them. Last year, I thought my 15 year old son had it. His symptoms were the exact same as my family members. Turns out he has Celiac Disease and what they are calling IBS. I cry when I see how hard this is on him. Managing high school is hard enough, but then having a chronic illness (especially a bathroom illness) makes it 10X more difficult. I applaud your openness. He is not at that point and refuses to tell anyone what he has. What 16 year old boy wants to talk about gas and pooping your pants and why he can’t have gluten. I hate it and wish I could take it instead of him which isn’t possible. So I focus my energy on finding a cure or more treatments. I believe someday there will be advances in medicine to alleviate or even cure Crohn’s. I work in research at the Mayo Clinic and a lot of doctors are focusing on Crohn’s, IBS and Celiac disease. There is work going into it, but it takes time, unfortunately. Just know that I am thinking of you and praying for you. I absolutely love your blog and podcast. Be kind to yourself. You are doing amazing!