I initially wrote this post last week, sitting on the couch with an alcohol swab in one hand and a syringe filled with Stelara in the other. I’d had a few tough days in a row — both with my health and in dealing with my doctor’s office — and was due for my first at-home injection of Stelara (my second dose overall).
Now, a week later, I’m doing OK. I haven’t seen consistent improvement with my health, which is tough, but I do have good hours and bad hours. For the most part, my days (and nights) are still full of discomfort and urgent bathroom runs. I’m still not living my life to the extent I want, but I tend to get a few good hours in the late afternoon some days, and I bask in those. They make me feel hopeful.
I actually felt horrible that day, but whatever. Ellie looked cute.This flare has officially been going on for four months now. What I thought would be a little blip in my marathon training schedule turned into a full-blown, I-don’t-know-what-to-do-anymore kind of situation.
My doctor is hopeful the Stelara will help. Since it’s similar to the study drug I was on — and with which I found great, healthful success! — we anticipate it getting me into remission, or at least to a place where this flare isn’t quite so affecting.
My first infusion was six weeks ago, and the doctor said to give it 6–8 weeks to start working. So far, nothing super promising, but any day now! In the meantime, here are a few things on my mind…
I never really got into the holiday spirit. Every time I tried to go run errands or go shopping, I either had to come right back inside or I spent the entire shopping trip in the Target bathroom (which, ugh, is all the way in the back corner of the store — very far away from my favorite home decor section). Seeing Brian’s family and my family was wonderful, but the Crohn’s cloud was hanging over me the whole time.
Simply having a wonderful Ellie time!I feel like a terrible dog mom. When I was feeling “normal,” Ellie and I walked at least three miles every day, and it was the best part of my day. I can’t do that now. So she either goes to daycare to get all her energy out, or I just try to throw the ball around inside and right outside the apartment as much as possible. I know she’s getting enough exercise, but I still feel guilty for not being good enough for her right now.
Christmas tree shopping! (Our tree is now super dead and shedding everywhere. Ellie sheds everywhere, too.)Working from home is both a blessing and a curse during Crohn’s flares. I’m so grateful to work from home most days because of the unpredictability of my stomach and my need to be near a bathroom at all times. That is a wonderful, lucky thing. But it also starts to feel incredibly isolating. Before the holidays, I found myself feeling lonely. I haven’t been partaking in any of my usual activities that get me out of the house — working out, going to events, seeing friends, generally being social — so it’s just me, all day, every day. Ellie is a phenomenal companion, and having her around does help, but this disease gets me feeling a little lonely.
My only friend! When Brian is traveling, we send him lots of photos like this one.Sometimes when I see healthy runners breeze past my window, I feel resentment. I know that’s not healthy, and I try not to feel that way. I know. But it’s hard sometimes. We of course don’t know every person’s story, but from the inside looking out at the world, every runner I see looks happy and healthy and carefree. None of them look like they’re possibly pooping their pants or coming out from behind a bush or about to bolt into the ferry terminal restroom. Is that the case for every runner? Probably not! But there are a few neighborhood runners I see out there every single day, and they just make it look like NBD.
Similarly, when I hear healthy runners complaining, I seethe. I’ve said this a million times, but unless you are a professional athlete, you don’t have to run today. You get to run today. Don’t complain about the weather. If it’s too cold, run on the treadmill. If you don’t have access to a treadmill, do something else! I know complaining is normal. I know oftentimes people are just venting or being silly. But as someone who has been mostly off the roads for the past four months, I would love to get to run today. And complaining about not being able to run because you over-trained and now you have a stress fracture? That’s not the same as being unable to run because you have a chronic illness. Injuries suck, absolutely, especially if it was out of your control. But if you had lingering pain and ran through it, or you refused to take days off and now you’re hurt? It’s hard for me to sympathize with that.
#TBT TO RUNNING!!!But YAY, I have run a few times lately! Part of the beauty of working from home is that when that good hour kicks in — usually around 2 PM — I can take advantage of it and attempt to get outside. It takes a lot to get me out the door, and it doesn’t always happen, but I try every single day. Sometimes “trying” means I only get as far as telling myself I *should* run. Other days, it means I get dressed but never get outside. Some days, I get outside but immediately have to come back in and am then too discouraged to try again. But then there are days — even if they’re rare — that I actually get outside and get as far as putting one foot in front of the other for a few minutes.
I’ve run the 3.1-mile loop to the track and back a few times in the past month, and even though the runs always include multiple bathroom stops and walk breaks — and even though sometimes I get super frustrated and discouraged by all that — it feels so good afterward, and I’m always glad I did my best. My best right now is slow and feels a little awkward, but that’s just where I’m at. And that’s OK.
#seenonmyrunOtherwise, most days I’m completely exhausted by 9 AM. I’m up a lot during the night using the bathroom. I’m not getting consistent, solid sleep, which adds up. Then, when I go through the very simple process of starting my day — showering, taking Ellie out, getting her breakfast, starting to get work done — I feel totally beat down. When I’m sick, little things require a bigger effort. It’s draining. (If you’ve never read the Spoon Theory, I highly recommend it. It’s so good, and I relate to it so much.)
I hate showering because that’s when my hair falls out. I usually love long, hot, karaoke-style showers. But during a flare, a lot of my hair tends to fall out, particularly when I shower — like handfuls of hair at a time. I used to have very thick, lovely hair, and now it’s just kind of stringy and sad.
I am so tired of being in the bathroom. I am so tired of over-thinking every single thing I do. I’m tired of leaving ridiculously early to get to things so I can allow for bathroom stops along the way, and I’m tired of constantly Googling things like “Target Edgewater NJ bathroom hours closed for cleaning.” It’s just exhausting.
ANOTHER PIC OF ME AND ELLIE SNUGGLING.I know I could try harder. I know I could do more. But sometimes I just don’t want to. I complain about not being able to run. Some days, that’s enough to motivate me to at least try. Other days, I just don’t have it in me to try. It’s hard to get out the door when you know you’re going to have to make bathroom breaks every few minutes. I could go to the gym and lift weights — I could even do planks and push-ups and stuff in the comfort of my own home! But for the most part, I don’t. (Though I did do a few glute bridges the other day and I’m still sore. Holy cow.) Some days the motivation comes easily, but other days it’s just not there.
Right now, I just want everything to feel easier. I don’t mean I want life to be easy. I don’t expect that. I like working hard! But I want everyday things to feel easier than they do right now. I want walking outside to be easy. I want going grocery shopping to be easy. I want walking 10 blocks in Manhattan to feel easy, so I don’t have to take a cab. I just want a little ease.
Every morning…This all just came across as pretty negative, huh? Before the holidays, I was feeling pretty bummed. Now, in the midst of it all, I’m doing OK.
Some days, even if I don’t feel great, I maintain a pretty solid perspective with this whole ordeal. Last night, Ellie slept nuzzled up next to me the entire night, and I was so, so happy, even though my intestines felt like they were throbbing. This morning, I got up to go to the bathroom, and when I came back to bed, she scooted over and rested her little head on my heart and fell back asleep. It’s not all doom and gloom over here — pinky promise.
Snuggly mornings with bae! (Do people still say bae?)I’m feeling confident that this medicine will work, and that 2017 will bring good health my way.
Oh, and just like three years ago, I did eventually suck it up and give myself that shot of Stelara last week. (Still got it! I’m basically a doctor by now.) Just like three years ago, I started crying as soon as it was over — for no reason at all — and just like three years ago, I’m dreading having to do it again, even though it was relatively painless and simple.
SHOTS SHOTS SHOTS SHOTS SHOTS SHOTS EVERYBODYYYYY!The only difference? Hopefully, unlike three years ago, this medicine actually works.
And I won’t call it a comeback until I’m absolutely positively sure.
SOOOO WHAT’S NEW WITH YOU? Tell me something good!
39 Responses
I stumbled across your blog tonight as I was looking for some kind of inspiration or something that I could resonate with. Oddly, it made me feel relieved that i’m not alone in this fight. I resonated with every single aspect of your blog. Crohn’s sucks & I sure know how debilitating it can be. I’m right there with ya. Keep fighting, here’s to hoping you & I find remission in this new year!
I really need to read this. I’m so glad I stumbled upon your blog. I was diagnosed in November of 2016, but I’ve had, what I recognize now, small flares for years. This, my first “official flare” has been going on since October 2106. I am/was a runner. I had to back out of my dream race. I thought I’d be better by now. I even had my gallbladder removed the day before Christmas thinking that was the last step. Nope, not better. You are amazingly strong and you help me realize I am not alone. Thankyou.
Love you so much your an inspiration
Just letting you know that you’re amazing and brave and strong. I’ve had a similar year with Cushing’s/post brain surgery and your posts about your illness always leave me a little teary, but in a good way. Someone UNDERSTANDS. I would never wish for you to understand, but I love how open you are on your blog and am inspired by your perseverance. We also have WAAAAY too many similarities to name so I am happy to have “met” you through your blog and your writing. So basically, just thanks for being you. 🙂
Reading your blog inspires and motivates me!!! I have Crohns also, and I take the Cimzia injections. AND I am a runner too! My husband started running alongside me during a flare to help keep me going and now he runs every time I do! Keep up the pace, and stay strong!!! Sending you best wishes for good results from Stelara.
Hi Ali! First of all, I hope that your health improves in 2017, and stays that way!
I totally relate about feeling like a bad dog mom. Sometimes when I’m dealing with particularly bad bouts of anxiety, or I’m working a lot, I worry that I’m not providing everything that a 4.5 month puppy needs. But I try to tell myself that my husband and I do everything we can to make sure that our dog has the best possible life. We send her to doggie day care, which she loves! We bring her to doggie kindergarten! We play with her and hug and kiss her constantly. From everything I see, you and Brian are the exact same way. I’m sure it’s a small consolation, but of everything on your list, I don’t think you need to worry about being a bad dog mom! 🙂 Anyway, this message is probably silly, but I know how much I worry about my dog, and I thought it might help to know that it seems like you’re doing a great job!
Happy New Year!
I am so glad I found your blog. I have not been diagnosed with crohn’s, I have suffered with the symptoms. I just began my running in 2015. I have been the lady running out from behind the bush! More times than I care to remember. My worst flare lasted 4 months. It was horrible. Dr thought it was all in my head. (Wrong end) for whatever reason it calmed down & not healed but much better I will pray for your remission.
Ali, I’ve been following your blog for a long time (since before your first marathon). Your courage and openness are so inspiring. You are so brace. I hope your new treatment gets you back to your best self. You’ve been through so much but you never give on. Keep it up. Xoxo
April
Brave.**. Not brace. ?
I was diagnosed 3 weeks ago with rheumatoid arthritis. It was a major flare–my foot blew up like a balloon. Apparently I had been having symptoms for years but you know us runners–we just ignore them. After a steroid burst I felt pretty good and optimistic. I saw my rheum and started on lower dose steroids and methotrexate injections. This week I had another flare. Now I’m feeling a heck of a lot less optimistic. Running, which has been my stress reliever, is really tough right now. I’m supposed to start marathon training in a few weeks. Feeling a little shell shocked by all of this. Another blogger sent me to your blog. I hope your flare calms down. I hope mine does too.
I love your posts and your Crohn’s updates. So honest. I just sent this one to my 16 year old son with Crohn’s so he knows how others are struggling like him. I can relate as his mom. Such a hard disease but you are an inspiration. Keep running and we never lose hope for things to get better.
Hey Ali, my heart goes out to you. I have had periods in my life when I’ve had ongoing health conditions that have lasted for months on end — though they were nothing like as awful as Crohns — and what I found hardest to deal with, during those times, was the loneliness. It wasn’t just the isolation of being home at lot, and not having a social life, and not working full-time, and not being able to run, it was also the loneliness of knowing that other people, even close friends, didn’t ‘get it’, and even perhaps were criticising me for staying home so much and not ‘participating’. I found reading Toni Bernhard’s ‘How to Live Well with Chronic Pain and Illness’ very helpful at that time. She lives with a chronic disease which keeps her bedbound for most of the day. Her words are wise and compassionate but also realistic. I’d highly recommend trying her book if you haven’t already. (I have nothing vested in her at all, just genuinely thought her book might be helpful.) Chronic illness is a horrible experience, and the loneliness/isolation factor makes what is already difficult even more so. I am so sorry you are experiencing this.
The hair is horrible for me ego wise which is so pathetic ?I live in a resident director apartment on a college campus with my fiancé and they come two the three times a month to unclog the tub because we’re not allowed to do it ourselves.
Yesterday marks one year since I went to the hospital bleeding and got my crohns diagnosis. I like to call it the day my life went to shit, literally.
Cheers to a new year, hopefully much better than the last, new medications, and that I can make it through my wedding in october with minimal flaring! (Any wedding stress management advice is appreciated!)
My something good is that I’ve been a fur
Mama for a year now to a rescue cat, and it’s the BEST medicine! Fur snuggles are amazing!
I really relate to everything in this post. I am also a runner in the midst of a Crohn’s flare about to start Humira or Remicade and I have barely been able to run in the past few months. I have been doing yoga which is helping reduce some stress that the flare-ups bring on, maybe yoga would be helpful for you! Hope the new medicine works for you 🙂
I wish I could solve this asap 🙁 you bring up a very good point about running and the “get to run” versus “have to run”. Sending all the love your and Ellie’s way!
HI MISS YOU. AND PANDA MADRE.
Easy on folks who get stress fractures. I remember reading all the exercise you did before your Crohns flare and also how you said the marathon was probably damaging to your body but worth it. Reread the graph you wrote about ppl with injuries and take that in!
Injuries suck, no doubt about it! My feeling is that there’s a difference between someone who gets an injury out of nowhere, which is horrible and shitty, and someone who knows something is wrong but runs every day regardless, refusing to take a break. I know lots of those people, and it’s hard to sympathize with those situations from where I am right now. (Is it needlessly judge-y? Totally. I admitted that in my post.) And I get the parallel — I ran the marathon while I was sick and was aware of the potential risks. I knew I wouldn’t get injured from doing so, but I also knew I might take longer to recover. Since the marathon, I’ve had the same good days and bad ones I had before I ran it, so neither I nor my doctor believe that one run was detrimental to my health. Did it help? Maybe not. But mentally it did. So I get it, but I stand by my choice to run, because I had a wonderful day in the middle of many non-wonderful days. And I knew people would judge ME for doing so — to each their own! (Though I’m not sure what you mean by “all the exercise” I did before I got sick. I was training for a marathon so I had hard workouts and long runs, but nothing excessive and with ample rest.)
Ugh, you have every right to complain. Really. I can imagine (not really, but I try to imagine) how frustrating this illness must be. 4 months of flare is a long time and I can only hope the meds wll kick in soon and you can start 2017 with a bright, new perspective.
Complaining about crappy things in your blog is the best medicine there is! And here’s my good thing: I got a Patagonia fleece for Christmas and it’s the best thing in the world and I’m never taking it off.
I think you’re doing a great job of staying positive despite not feeling well! I have endometriosis (and some other fun chronic issues!) and for 3 years, doctors were convinced it was GI related. Having an “invisible illness” was incredibly isolating. It seems like you do a good job advocating for yourself — keep it up!
Wow! I feel for you. I have Crohn’s too but mine has manifested itself much differently than yours. I had a bowel obstruction when I was 31 and was diagnosed with Crohn’s. Never had any medication, etc. until 25 years later when it hit me bad. I had been living on Imodium daily for a year or so before this. I understand about the BR issues believe me. Had major surgery in on a Friday and out on the next Wednesday and back in again 1.5 weeks later with a major infection from the surgery. Presently on MP6 and B-12 injections. Can’t take a biologic anymore. After being on Humira for two months, I ended up in the hospital with a major fungal infection in my lungs. I’m turning 63 next month. The worse thing for me is feeling fatigued (not sleepy, just tired). Not too many things I can’t eat. There is always someone worse off than us. I wish neither of us had Crohn’s. Sounds like you have it worse than I do. Hope you never need surgery. I expect that sooner or later I will need more surgery. Wish I could run like you do but my left knee has prevented me from doing that for 15 or so years. I miss it. I love your dog. She’s much larger than my dog. Take care. Hope you had a Merry Christmas and I hope you will have a Happy New Year! I wish you success on the meds you are taking.
Cheers to 2017 and better health for us both! Hang in there, thinking about you!
Ali, you are an amazing person. I admire your strength and I love your passion. You will rock 2017.
Hi Ali!
Thank goodness for our furbabies. When I was going through a terrible time (not illness related, but horrible nonetheless), my pup was by my side through it all, and without him, I never could have done it. It looks like Ellie is doing much the same for you. She’s a good girl.
I think of you when I run, and I appreciate each run because I know that there are others who can’t run, while I (an old grandma who runs sloooow) am able to. I won’t be able to forever, and my current running buddy (another four legged furbaby) is suffering from a run-related injury and is sidelined, like you are. Not as long term, but still. She hates it too. Something tells me, though, that your motivation to run is very different from hers. Hers involves squirrels and bunnies saying rude things to her.
Anyway – I just wanted to tell you how much I am hoping things get better, and how much you inspire me to keep going, even when I’m reeeeely not into it at all. I’m going to start training for a 10 mile race soon, and I wish I had a November Project near me like you do.
Hang in there, and know that I would share my spoons with you if I could.
Ali, I also have just started Stelara. My first self injection to be given in a few weeks. I am sharing because sometimes just knowing you are not alone can be such a comfort. I stumbled on your blog during Crohns and Colitis awareness week, which is when I started Stelara. 🙂 Your story is familiar and inspiring. All the best to you. 🙂
CHEERS to Stelara — here’s hoping it works wonders for us both! (And the injection was totally not bad, I just got myself needlessly worked up beforehand. You got this.)
I can’t relate at all, but I just wanted to say my fingers are crossed for the medicine to work and you can start 2017 on a positive note.
Ummm something good? I knitted my cat a scarf. He actually really likes wearing it and brings me so much joy. Wow, that sounds so sad, but I hope it brought a smile to your face!
OMG. That is amazing and does not sound sad, it sounds adorable and like you are a great, loving cat mom. Duh.
I am crossing fingers, toes, and every body part I can cross that this medicine works for you. I hate to use the word inspiring because it makes me gag a little, but you are! You really inspire me to have a positive attitude when all I want to do is whine.
Good news here: I have a whole day to myself!
I really hope the medication starts working for you soon and the new year gets off to a fabulous start!
Good news here? Today is my last day of work for 2016 and I’m looking forward to a long weekend of relaxing at home 🙂
Tons of happy thoughts towards you, Ali! I hope this medicine works for you & you start feeling better. I know what it feels like to not feel like yourself!
As far as something good – I went to spin class on Tuesday & started feeling like MYself again. I hope it keeps up. 2016 has been a doozy. I’m ready for 2017.
At the last minute last night I went on a 6 mile night hike with a local hiking group. There was a group of trail runners doing the same course an hour behind us. It got me thinking that someday I might not be able to do this stuff. I really enjoyed if and was proud of myself for venturing out of my comfort zone. I hope you remission kicks in for you soon.
Go girl! Pretty sure I would be terrified to hike at night, so I love that you did that!
Thinking of you Ali. I have a good feeling about the next few weeks and 2017 in general. Yep.
During flares it’s so hard to focus on or look forward to anything other than getting better. It’s all-consuming and so slow and so lonely. I don’t know about you but I often feel like calling my doctor and being like “hello, i’ve nearly wasted half my year being sick AGAIN, can you please just fix me already, I don’t have patience to wait for this medicine to maybe possibly work in [insert number of weeks here]”.
And yes, the hair….*sobs*…
Also, finally, Ellie is so adorable.
YES to all of the above. <3
I didn’t realise just how debilitating crohns can be! Fingers crossed for some respite for you
Ali, I have never experienced anything as debilitating as your illness and my heart goes out to you. While living in Quito, Ecuador my husband and I attempted in vitro where I gave myself shots for weeks to develop potential embryos. Then, when we had success (triplets!), I had to give myself progesterone to maintain the hormones for 12 weeks. This was obviously for a pregnancy-related health issue, one I chose willingly and only temporary. The medication made me feel horrible and I vomited for the first 20 weeks. My cat, Boris, would lie along my belly and keep me company too. I am in no way suggesting that this is similar, but I truly can relate to the isolation and some of the discomfort. Know that I am thinking healthy, healing vibes for you as a runner from So Cal who has been following your journey. Keep cuddling your fur baby! P.S. My “babies” are now 16 and learning to drive.
Love to you! i’ll keep looking for that something good, i could use a dose of that as well.