Let me take you back in time to a week and a half ago.
The weekend had not been awesome. I’d attempted a yoga class Saturday morning, and I had to leave the room twice to use the bathroom. It was especially embarrassing when I came back into the room and everyone was in side angle pose…facing the door.
On Sunday, I embarked upon my usual tradition of a morning spin class. Again, I had to haul ass out of the room during class — blinding everyone in the dark room with the blast of brightness from the hallway when I opened the door — to do things like Crohn’s.
I spent the entire rest of the weekend on the couch. I was tired and lazy and I lacked any semblance of motivation or energy. I was enjoying high points here and there, but mostly this disease was continuing to wear me out.
Monday came, and Monday was great. After work Monday, I went to yoga with a new-to-me instructor (Terri, and she is wonderful and kind) and accomplished my big yoga goal of the moment: I started in crow pose and then jumped back straight into high plank pose. I think the yoga term for this is whooleykohavsana, but I’ll have to double check.
So I was riding high on Monday. Riding high plank.
On Tuesday, I went to yoga again. I crow-jump-backed again. Three times, in fact. My yoga teacher even posted a gold star on my Facebook page after class.
Then Wednesday came. On Wednesday, my stomach felt slightly worse than usual during the work day, but I didn’t think a whole lot of it. I decided that instead of going to yoga again, I would go home and then visit my friend Michael and her sweet sweet baby. They live next door, so it’s eeeeasy.
I decided to eat dinner before I went to Michael’s.
Then, almost immediately, something terrible happened.
The Crohnsing went from about a 7 to a 10. On a scale from 1–5.
I did not go see my friend Michael. I spent the entire night in the bathroom absolutely writhing in pain. Not discomfort, not like before — pain.
And that’s how the past week has gone.
It’s been real bad over here, folks.
Not that things were ever particularly good or better. The methotrexate most definitely isn’t working at all, so I’ve been feeling frustrated and like nothing is ever going to make me better. My standard for a decent quality of life is scary-low.
I worked for a few hours last Thursday morning, and then had to bolt home for the day, and I called in sick Friday. I made it a whopping, what, week?, into the new year before having to dive into the sick day pile (I’m lucky to have them, most definitely, but they sure do go fast for this girl!).
For the past week, I have felt a lot like Spring & Summer Ali. The Ali who was too sick to get off the couch, who couldn’t eat or drink anything, who has a “gray face,” according to her coworkers and who has to wear sweatpants 100% of the time because anything else is too tight and constricting.
I am always tired, in large part because of the disease itself, in also a large part because I’m not sleeping and in yet another large-sized part because of the methotrexate. When I started on the drug, I asked my doctor about any side effects, and aside from the usual ones I’m also experiencing (crazy hair loss, cute acne, fun nausea), he said I’d “be really tired.” My sassy response was, “That’s fine, I’m always tired.” And he sort of smirked. “Well, you’ll be tired-er.” Naturally I refused to believe him, and naturally I’m an idiot.
The night sweats are kicking my ass. I go through about four costume changes a night. I start in the bed, on a towel. Then I go through two pairs of pajamas. After the first pajama change, because I’ve thoroughly soaked through all the blankets, sheets and mattress, I move out to the couch. Brian has been making a little bed-couch situation for me before he comes to bed every night, and I think that’s nice. It makes me smile when I make the 3 AM transition. By 5 AM, I’m usually into a bathrobe or another towel. On the couch.
So thaaat’s annoying. Because I don’t like changing in the night in the dark and I definitely don’t like having to do laundry.
As always, I’m also in the bathroom pretty constantly. Because I’m hardly eating or drinking (my fault, my fault, my fault, yes), the bathroom situation is worse. And I’m dehydrated as hell.
But the worst part is the pain.
I remembered what so much of this all felt like, since it all hasn’t truly, fully gone away in, oh, two years. But I didn’t remember this pain. And now, wow, I recall quite clearly.
There’s pain in my lower abdomen, which is standard for me. But there’s also pain in my middle abdomen and my upper abdomen, by my ribs. Every single part of my front midsectiony area hurts. I can’t sleep, I can’t sit up straight, and I definitely can’t bend over to tie my shoes.
But here’s the big difference between Spring & Summer Ali and Winter 2014 Ali: my attitude.
I spent some time in the past week crying, that’s for sure. I did my share of “Why me?” and “This isn’t fair.” I wept because it hurts, and I shed a few tears over the fact that this is not how I wanted my new year to start.
Not having control over your life or your health is so frustrating.
I refuse to go down the self-destructive path I went down this summer, though. I think about my mental state then, and it was scary. I will never, ever forget one of the last nights I was home back when my parents were taking care of me in May (when I was supposed to be on vacation in Hawaii with Brian). I was laying on my parents’ bed watching TV and my mom asked, “What can I do for you?” (As if she hadn’t done enough already.) I looked at her and I started to cry, and I said, “I just want to die.”
I think it took some self-restraint for my mom not to slap me right across the face. The look on her face was so horrible and so sad and so devastated that just thinking about it makes me cry now. But I was so deeply depressed and upset and I wanted to be out of my misery.
That night was a slap in the face, though. You can’t tell your mom you want to die. Even if you’re half-joking or being dramatic, don’t say that. It will break her heart.
Yes, now that this gut-wrenching (for real) pain is back, there are times I find myself yelling out, “I can’t do thissssss” or “make it stopppp.” I am forcing optimism on myself, though.
So what next?
I went to the doctor today.
They took eight vials of my blood, among other special types of samples, and gave me IV fluids for the dehydration. One of the new residents working with my doctor talked to me before the doctor came in and said, “So basically they’ve tried everything on you and nothing works?” You are correct, sir!
My doctor came in and handed me a box of tissues, because I’m a doctor crier, every single time. I get so emotional, baby. He said he didn’t like that I’ve lost some visible weight (around 10 pounds since Christmas) and had me talk with the nutritionist. Then the good, productive stuff happened.
Remember how my doctor wanted me on that drug Stelara, but my insurance company refused to approve it because it’s only FDA-approved for Psoriasis, which I don’t have but CariDee English from “America’s Next Top Model” 2006 has? Well, my doctor is co-running a clinical trial right now for a new version of Stelara that’s specifically for Crohn’s diseasers who have failed other treatments. It’s for us failures!
Sign me up.
So he did.
I am officially enrolled as part of a clinical trial. I have a bunch of appointments leading up to the actual start; I have to meet with an ophthalmologist, a neurologist, an EKG person, a chest X-ray person and all kinds of others who will test every sample in my body. Then, on February 5, I can begin the trial. I’m going to be a lab rat! Or a guinea pig. Which one is cuter? Guinea pig, I guess. Or puppy.
Now of course, there’s the chance with a clinical trial that I will get a placebo (no drug). And that would suck. But there’s also a chance I’ll get the drug, and that the drug will help heal me. That’s the outcome my fingers are crossed for.
Today, my cab driver took me through Central Park on the way home from work. And instead of feeling hysterical or heartbroken as we drove by all the runners, I kind of wanted to cowbell for them. But I didn’t have my cowbell.
As we drove by my favorite spots — the south mall where we used to meet for Saturday morning Team Challenge runs, my special JackRabbit commercial filming spot, the Reservoir, the Bridle Path, Engineers’ Gate and Bernie’s Bench — I didn’t feel as upset as I would have expected. Instead, I felt excited.
Because for each setback, there’s a comeback.
And I know that at some point, I’ll get to make my comeback.
I can’t wait to be able to go to yoga again. I can’t wait to get back to spinning. But best of all, that first run back, whenever it may be, will be amazing. I know it.
I can’t wait to make my comeback.
Ali, I have just stumbled across your blog as I was looking for new runner blogs to follow and have been catching up on your life. I have ulcerative colitis, and have for the past almost 18 years. My college experience was terrible as I adjusted to life in a dorm with one female bathroom for the whole floor and using Canasa as part of my regimen. Runs were difficult and I spent a ot of time in the woods. Somehow, between Lialda and the birth of my first child (which I swear was the miracle reset button on my body considering I had a big flare at the end of the pregnancy) I have basically been in remission for five years now. I have to have colonoscopies every year to screen for cancer but that’s nothing compared to the way life used to be. Keep the faith…you are not alone and there will come a day when the only pain and exhaustion you have is from your training.
Thanks for your blog. It is so nice to be able to relate to you!
Thanks for your blog. It is so nice to be able to relate to you!
Fingers crossed you get the drug and start to feel better!!!
You’re awesome, keep your head up! I hope they give you the real drugs 🙂 Also, I can’t do any crow pose transitions (I can barely do crow pose) and I have no excuse.
Blast! Hate reading this…but glad that your brain is staying (somewhat) positive (most of the time). Also glad to hear that you’re now a likely candidate for the drug trial – shazahm! And look at it this way – whether you’re placebo or not, if it’s effective, then you’ll likely be able to get it eventually (although sooner rather than later would be good…). Fingers crossed for you, lady! Sending lots of good digestive (?) thoughts your way!
Hope the clinical trial thing works out for you. I’ve finally decided to try surgery for my chronic pain. I’ll be getting part of my leg sawed off and a metal peg hammered down into my femur… Sounds so much more interesting put that way than plain old “hip replacement” 😉
Really pulling for ya!
Holy shit, MILF. That sounds intense and scary, but also pretty badass. “Oh no big deal, just taking a saw to my leg, see ya after surgery!” I hope it works and relieves the pain you’ve been dealing with for so damn long. I can’t even imagine, I really can’t… Pulling back at ya! For ya? I don’t know. You get it.
I’ve been reading your blog for awhile but haven’t posted. I’m not a Crohns sufferer, but I am a runner girl who lives in NYC. I don’t know if it’s stupid to say, but so much of what you write about resonates with me, even though I’m not dealing with a disease like Crohns. I think a lot of what you’re addressing (specifically in your Claustrophobia post) is very much a part of the human condition (especially the human condition as experienced in NYC!). It’s so helpful to know you feel some of the same stuff I do. What I mean to say, and am saying quite inelegantly, is that we’re all in this together. Sharing stories helps and it’s really the only thing we have control over…how we tell our story. So keep doing it. You’re inspiring me to keep telling mine and to always be aware of the control I have over how I tell it. You’re an awesome chick.
Waiting for your comeback Ali!
I am sorry. Stay strong. Hopefully the clinical trial helps!
My son Tyler has had crohn’s since he is 5 and I don’t think he was ever in remission until his doc decided to put a g tube in and take him off food for a month … longest month ever!! He was a restricted diet for the next six months and thankfully got his food back on Christmas. He was fully tested at the new year and I don’t know how but he was finally good!!! I hate to use the R word… he had a bout with c diff.. but other then that he has been good… You will make a comeback and you will be amazing, you are an inspiration to everyone! I applaud you and your effort. Keep your head up.. BE BRAVE as I tell me son… Hope this new medication helps you and in anyone else it needs to in the future, because Tyler is at the end of his meds right now….you might be helping him in the future.. so thank you! Feel better soon!
Ali – This is the first time I’ve found your blog and all I can say is: I hope the trial works and you feel better so soon!! I have Crohn’s as well and that pain, I feel for you, it’s no good. Thanks for sharing your story! I hope you’re doing better this week than last.
Ali, this is definitely a random comment but I’m a dietitian and I just learned a new approach to treating Crohn’s Disease I didn’t feel right not sharing with you. And I appoligize if you’ve tried this approach already, but I was watching a webinar on IBD with a focus on Crohn’s and they recommended exclusive enteral nutrition -such as Pediasure or Ensure, or an NG or Gtube as a sole source of nutrition for 12 weeks to promote remission of Crohn’s Disease. I was just wondering if you had ever experienced something like this or heard of it?
Email me and I would be happy to link you up to the research.
Hi my friend,
UGH, I’m so sorry… I don’t know what else to say. This sucks. On a lighter note, your mom is adorable. What a sweetie. 🙂
Sending you good vibes, Ali. xoxo
I am so sorry that you continue to suffer. 2 years I just can’t imagine, I mean I really can’t fathom it. I am newly diagnosed (last summer) it only took about 6 years 🙂 I have Crohns and RA. You will continue to be in my prayers. Hang in there this new clinical trial WILL help you I just know it!!!
Aw dammit, I hated reading this. Not because I don’t love reading your stuff, but because well the obvious. Sometimes life just sucks, and being fair is a complete joke. I’m sorry you’re going through all of this and for such an extended period. That being said, I love your attitude. Embrace the good, the bad and the sweaty. I’m hoping instead of night sweats, you’ll be able to experience that wonderful forearm sweat again. I’m rooting for you.
Forearm sweat!!! Your memory is impressive, girl! Be my best friend.
Ali!!! I am so sad to hear this. I can only sympathize and hope you know that I think of you often. Someway, somehow you will get through this and become an even more amazing person than you already are. I admire you and how you can write about this stuff, as I have pretty much tuned out personal blogging because I just can’t put into words how challenging it really is. I can relate to every scenario you experience and am proud of you for sharing it with others. Thinking of you!!! xoxo
You WILL come out this on the other side. I feel your pain (and know it well- all of the horrible details are relatable – is that a word?). As a person with UC (un-affectionately called “Colleen” – she’s a real b), who was in a flare for 3 years, I have complete faith that you will get better. Hooray for clinical trials. Eat carefully, try some stuff to help you sleep (melatonin? ambien?), and know that you have a huge cheering section sending you love.
I had Stelara for 6 months through the Mayo Clinic. Because I had failed every intervention including surgery, my insurance covered it. When I had to switch insurances, I had to stop. It was my miracle drug and has still put my Crohn’s in remission for about a year. My fingers and toes are crossed for you! You deserve a medication that works! Feel free to email me if you have questions.
Hope you get some relief soon. Praying, you feel better.
Good luck with your new trial!! I had to start a new chemo this month as the other one decided to stop working well.
Thinking of you!
Hi Ali – I was once sick for 4 years in a row! One-upped. I had a few months of remission in between but I mostly felt terrible, all the time. I can really relate to these posts but I had the same thoughts and feelings during that time.
Year 4 I had surgery, and a temporary ileostomy and I can’t tell you how great I felt. I felt amazing. I loved having an ileostomy, I loved not being in pain and I love being able to eat and do things. Has anyone in your team brought up surgery at all yet?
I know the thought of surgery sucks and is scary, and recovering is not at all fun and you spend some time in the hospital, on TPN, and shuffling around with a walker and a lot of tubes hanging out of you but… it is so worth it. I was even able to stay off medication for a year afterwards (now I’m on Remicade and imuran).
Wishing such good things for you with the clinical trial.
Thanks as usual for sharing your Crohn’s and self journey with us. I am so glad to hear you are hopefully going to get the actual Stelara. Don’t they give the placebo people the actual drug after the study period? Anyway, my son is on Stelara, and he is certainly a guinea pig, as he is only 13 but he was in the same boat as you, tried everything.
Also, don’t beat yourself up about the way you felt this summer. It is so hard, what you are coping with and well, sometimes you just go to the dark place but there is always light and now you can appreciate the small little victories so much more, like getting down a yoga pose, or even making it to yoga class.
Wishing you the best,
Yes, after 12 weeks the placebo people get the drug, too! So even if I get the placebo I will, eventually, get the drug. That 12 weeks just seems AWFULLY long!
Keep going ! We are all with you. I send you lots of positivism and courage. 🙂
Hang in there! You can do this. I hope the trial drug helps.
We are so with you! I was so touched with your sensitivity to your mom’s reaction.
I can’t imagine what it really feels like to be going through this long-term struggle. Glad to hear you’ve got a positive, can’t knock me down attitude still… it’s very admirable!
I am so happy to hear that you have been accepted to do a clinical trial. I really hope you get some relief soon.
Oh Ali, I’m so sorry to hear that you’re Crohns-ing again. I think that you are so brave for sharing your story with all of us, and finding the positivity even if the dark times. I’m sending you big hugs and lots of Friends quotes!
This post made me cry because even though I don’t know you, I have been following your blog through this entire ordeal, and it breaks my heart that you’ve had to deal with so much pain. As someone with UC, I know more than some how much this all sucks, but I can’t imagine dealing with the type of flare you’ve dealt with. I am SO glad that you get to be a part of the clinical trial, and I am SUPER impressed with your attitude. A healthy mental state can go a long way even if you’re not physically healthy. I am cheering for you, Ali, and praying that you find healing soon.
You can’t cry, I get to cry!
I’m a doctor crier too! More so in recent years… makes me feel real dramatic, so I’m glad I’m not the only one. Even the slightest news sometimes sets me off. It’s quite comical actually how sensitive I have become. Thinking of you. BTW, best quote ever “Because for each setback, there’s a comeback.” xo
Ali, you made me cry. I’m so sorry you are still going through this and I hope so much this clinical trial works.
You can’t cry. I do all the crying here!
You are so strong! Truly an inspiration for everyone out there going though a tough time. I’m sorry for what you’re going through, and I appreciate you sharing it with such honesty. I’ve never met you, but can tell from your blog what strong, incredible person you are.
You are so amazing and strong! I’m happy that you have a more positive outlook and I’m cowbelling for your comeback!
I know this is a serious post and humor has no place here, but I lack tact so I have to tell you about something hilarious I saw on Reddit 2 days ago. There was an AMA (ask me anything) with a girl who had Crohn’s so badly that she had a colostomy (is that the right word? I don’t know, she poops into a little bag on her stomach, whatever that is)
ANYWAY, someone linked to this. This is a real thing.
The pictures are my favorite. Who says you can’t dress up a stoma?
I also learned from reddit that there is a very odd sexual fetish associated with stomas. Don’t google it and especially do NOT google image it. You’ve been warned.
Seriously though, I can’t imagine your level of daily pain and I hope the drug trial is wonderful and gives you back some quality of life!
It’s been two weeks and I’m still scared to click that link. I feel like I don’t really have to because I think you did a good enough job describing it. Right…right? Don’t make me click it 🙁 Hope YOUR pain starts to subside soon, too. I need to see you back out and running 100 miles at a time so I feel somewhat motivated to get off the couch and walk 100 inches…to the kitchen…for Nutella.
You are such a beautiful person and I don’t even know you! Your honesty about life is refreshing, even the bad parts.
My heart breaks for you that you are STILL going through the horrific pain. I am excited you are going to be a part of the trial, and prayerful you will not only get the real medicine, but that it will work for you!
I can’t wait for the day when you post about feeling awesome, but until then, I am so appreciative for your candor on what must be the most difficult thing you have been through.
I feel like you’re going to have an epic, Payton Manning style “Hey, I’m retired…just kidding! I’m your team’s worst nightmare.” style comeback. Except it won’t be anyone’s worst nightmare. We’ll be really excited and I’ll stalk your blog harder.
HAHAHA. This is my favorite comment. I’m going to Peyton Manning the SHIT out of Crohn’s disease.
It’s so great you were able to get into the trial! I can’t wait to read about your comeback…it’s going to happen and it’s going to be amazing!
I hate that you feel so rotten, but I do love that you are wearing striped pants in that photo. You’re adorable and it’s just so crappy that someone with so much verve keeps having these set backs. XO
I sleep on the towel you gave me every night. <3
I’m so sorry to read that you haven’t been feeling good 🙁 I’ve been following your blog for years now, and even though I can’t relate, I sympathize with you…I am glad you have a optimistic attitude, that can only help, and I am thinking of ya!
I am so happy for you! I participated in a clinical trial last spring (fail!) and almost signed up for the Stelara one, too, but decided to try 6MP (again) instead.
Please blog about the trial. I can’t wait to hear that you’re getting better!
Cheering for you! There’s nothing I can say to make you feel better but your posts never fail to inspire me. I hope this study works and you can feel in control again! I’m wishing you the best!
You are inspirational! You will totally get through this. The universe has a way of coming around, I’m convinced 🙂
I’m so happy to hear you’re in a clinical trial, that’s great! I so very much hope that you do get the drug and that it helps. I’m sending lots of positive thoughts into the universe for you. Cheers to your comeback…it’s coming, I know it, Ali.
Yay for being optimistic! Best of luck with the trial meds!
I am glad that despite the physical setbacks, you are mentally feeling better (and writing about it!). Also super glad that you’ll be on the trial and will keep my fingers crossed that you get the good meds so I can resume living vicariously through your broadway show press experiences (because thats TOTALLY what is most important here…)
Praying that you er the drug and healing comes fast! Praying , praying .
You fucking rock.
I’ll be sending all my pink fluffy thoughts your way that get the drug you need.
I love that you managed to use the F-word and “pink fluffy thoughts” in one comment. I think we’d be real life best friends.
Sending this to my sister now. I have to admit I don’t always understand what she is going through but reading things like this helps. Hope these next few days are better than the last few.
Comments like yours are honestly the reason I keep blogging. That means a lot to me, to know that I’m able to help you better understand what your sister is going through. I hope she’s feeling well!
<3 and hugs for you!! So sorry you're feeling crappy again, but your strength is amazing!!
I’m so sorry Ali. I hope the clinical helps you. I hope something helps you soon. (I was in a clinical for migraines and the drug they gave me was pretty awesome, so I hope you have similar luck!) Also, I think I’ve been to that rest stop and seen that bear…haha
I can’t wait for your comeback either (: This clinical trial is going to work and you’re going to get better!! (: I hope the pain subsides, stay strong!
I am a relatively new reader of your blog and I am so sad to read of your health situation. You are a very strong person and I sure hope the doctors can find something to relieve you of this awful disease. Keeping you in my thoughts and prayers!
You are a beautiful writer, and I always look forward to your posts. Sending you my thoughts and best wishes!!
Ali, your strength floors me. I’m so happy that you get to take part in the clinical trial. I’ll keep my fingers crossed that you get the treatment!
Also, thanks for bringing up CariDee! One of my top model faves ever since Noel yelled at her for making that joke at the bullfighting event.
Keep going girl, sorry you’re feeling so awful 🙁
So sorry to read this update, Ali. I hope that you are feeling better very, very soon
Ali—you amaze me. I know you are going through he’ll, and I won’t pretend to understand your pain. But, you have a beautiful voice, and even when things are drk, you always have something behind your words….hope. There is this eternal optimism in you that comes out in every single post, even the ones that are hard to write.
You are worth fighting for, and you are worthy to be fought for. Someday, you are going to feel better, and someday you are going to kick this dieseases ass.
Praying for you and send ing you love from Texas.
You are so nice and I want to [gently] hug you. Thank you for saying such kind things.