“I mean, I’m no stranger to pain,” I told the note-taking physician’s assistant with the sympathetic eyes. “I used to run marathons.”
I used to run marathons.
When you don’t think before you speak, you say things like that.
And then, as you keep rambling about your symptoms aloud, the thoughts in the back of your mind quickly go to all the other things you used to do.
I used to run.
I used to go to the office every day to work hard at a job I loved — a job I spent my entire life working toward and that I was so proud of.
I used to write fun, happy blog posts!
I used to actually see my friends.
I used to be awesome at sending people cards not just on their birthdays, but on random days, too, because I wanted them to smile.
I used to have muscles.
I used to leave the apartment every day.
I used to tweeze my eyebrows before they took over my face, caterpillar-style.
I used to smile every single day.
I used to laugh a lot.
I used to tell jokes.
I used to Skype with my perfect little nephew all the time because I had lots of energy and enthusiasm.
I used to make plans for the future, never doubting whether or not I’d be able to follow through with them.
I used to be so happy and, with the exception of a few low points in 2012, I was pretty healthy, too. The two go hand-in-hand.
These days, I am not at all the person I used to be. Clearly. I don’t laugh, I don’t smile much and unless I’m going to the bathroom or the kitchen, I don’t get off the couch. I certainly don’t leave the apartment.
Yes, I’m back at my NYC apartment on my sad leather couch. I got to spend an amazing week in New Hampshire, letting my doting and very kind mother wait on me and cook me gluten- and dairy-free foods. She was amazing and the change of scenery was much-needed.
Unfortunately, though, I didn’t leave The Granite State feeling any better. I think my mom and I both assumed that getting away and “relaxing” would cure me, and while the trip was so nice and I’m so appreciative of everything my parents did for me, being “home” didn’t ultimately fix my various problems.
And, in what seems to be an almost comical move at this point, I managed to get worse this week!
I know, how is that possible? But it is!
I flew back to New York last Thursday night.
I thought I’d be able to go to work on Friday, but that was silly. I spent the day in the bathroom instead — my home within my home.
I was on the couch all day Saturday. I never left the apartment. I never breathed fresh air.
So I was determined to get out by Sunday.
Then, oddly, I woke up Sunday with really sore ankles. My wrists and ankles had been hurting while I was in New Hampshire but I was never concerned. Joint pain and inflammation are side effects of Crohn’s disease, and the pain wasn’t particularly debilitating, so I just went with it. Plus, the pain tended to loosen up throughout the day.
On Sunday, though, my right ankle really, really hurt. And as the day went on, the pain got worse.
By late afternoon, my ankle had blown up and I couldn’t put any weight on it.
Sunday night was one of the worst nights of my life.
It’s so dramatic, I know.
But really, it was so bad.
I have never experienced that type of joint pain. Plus, it’s not like my stomach decided to let up in the meantime. So every half hour I was literally rolling myself out of bed and crawling on my hands and knees to get to the bathroom, where things continued to be unbearably painful. I screamed and hysterically cried out in pain throughout the night, and I realize how pathetic this all sounds but holy hell, it was brutal.
By Monday I was completely immobile. There was no chance of going to work. I couldn’t walk at all or put any weight on my right foot.
I had gotten past the “Life’s not fair” phase of being sick, and I’d long since moved past the Saturday morning “everyone else is long running” sadness. But at this point, it honestly seemed like someone was just playing a sick joke on me.
The good news — yes! there is some good news! — is that I saw a new doctor on Monday and he’s going to be my new guy. He came highly recommended to me by several trusted people and despite the fact that I was an absolute mess throughout the appointment (my ankle was in so much pain that I cried the entire time), it went well.
The plan, for now, is to start taking the Humira weekly and hoping it will actually start helping (I’ve been taking it every other week for a total of eight weeks now and, clearly, haven’t seen any change, let alone improvement). I’m also on 6 MP, a drug that is known to work well in conjunction with the Humira. Unfortunately — yes! of course there’s an unfortunately! — this drug takes three to six months to take effect. No problem. I have all the time in the world.
The doctor put me on an antibiotic for the joint pain and swelling, and I’m happy-ish to report that after a few days the pain has begun to diminish. I’m still a hobble-master, but the pain isn’t scream-inducing like before.
Next week I’ll go in for a test that has a real name, but that I call “the Fancy Pill Camera Test.” The doctor wants to see my insides without doing a colonoscopy, so I will take this giant horse-sized pill that has a camera inside it, and as the pill digests, the camera takes wireless photos of my intestines.
Science, man, I swear. It’s amazing.
And yet this disease has no cure. So science still doesn’t impress me that much.
I’m still gluten-less and still dairy-less, and if I get one more email suggesting I try the SCD diet I’m going to punch someone. Yes, I know about the diet and the book and the “lifestyle.” People, I know you’re trying to help, but you’re killing me, here.
I’m also officially beginning disability/medical leave from my job.
This one breaks my heart and I don’t want to talk about it.
I never in my life thought this disease would come to this, and yet here I am.
I used to be able to live my life.
Enjoy every day that you have your health, friends. When you lose that, life really starts to suck.
152 Responses
I’m so sorry Ali! I can’t even compare my IBS to what you’re going through, but I hope there’s a cure someday really soon so you can stop suffering and start living again!
I am so sorry to hear about your illness! Crohns is such a difficult thing and I hope you get through such this difficult time in your life and get your smile back. You’re doing so well and it can only go up from here!
I started reading your blog when I was going through (then) unknown stomach troubles and in nursing school. I googled “runners with stomach aches” to see if I could fine anything to make me feel better and your blog popped up. It was during a pretty sucky time in your life with the move and everything. They did finally (kinda) figure me out after a pretty brutal mri, scopes and ultrasounds and lots of useless meds. Anyway, I said all that rambling to say your blog made me feel better on my rough days and I hope you find something equally as good for you. I have a patient with Crohn’s and he is miserable right now. I want to give him a huge hug and tell him about you and how you both are in it together…but that would be weird.
I hope you wake up tomorrow and have something to smile about, even if its a little birdie or Tyler. Thinking of you!!!!
I’m so sorry about your illness. I too have Crohns Disease. I was in ER/ admitted to the hospital in April and had bowel resection in May. I don’t really have the joint pain you describem thank God, but everything else is shitty (pardon the pun). I was about 100 pounds overweight before I lost my first 45 pounds due to the disease. It wouldn’t kill be to loose another 55 pounds. I have applied for Social Security and have been denied. I have worked many years in the security and investigative fields and it kills me I can’t do the work I worked so hard to learn and master. I absolutely loved what I did. Now, I am happy if I don’t shit my pants when I walk outside for a minute. I’ll pray for you and us and all people with this and other diseases. Thank you for sharing your blog.
I’ve been lurk-reading your blog for a few months but can’t anymore. I wanted to come out of my hiding place to send you all my best wishes for healing, even though I am just a stranger in downtown Manhattan.
Just stumbled on this blog in a desperate attempt to help my sister in a flare up. We both have Crohn’s. I hope you feel better soon! Sending prayers!
I’m so sorry you’re going through so much. It’s so worrisome not hearing your bubbly spirit hum across my internet connection when I read your posts. Hugs and hoping you’re better soon.
I am so sorry you are going through this. I am thinking of you and wishing, hoping, praying you feel better soon!
Being a Crohnie myself, I hate it when people shower me with advise, so this is all I’m saying: be patient with yourself, better days will come, I’m sure of it.
All I can say is that I’m here, reading and wanting better things for you.
My prayers are with you and I think about you often. I think though that you should totally get a puppy. THAT might help, at least your spirits… a little. xoxoxo
Stay Strong ali on the run! we’re all cheering for you!!
Thinking of you all the time. Heading out to Vermont tomorrow to see my family (and my UNH best buddy) and am grateful to be able to get on a plane! Remi, 6MP and Pred were the magic combo for me. I did have some nausea with the 6MP- I take it at night, but right after dinner, so I have some food in my belly. I would say it started to work after 6-8 weeks. I hope each day you are able to find a little light… you have certainly helped so many others. Let us know how we can help you. XO
Hello!
I comment here and there and creep on your Twitter, but as many have mentioned here I am refreshing this blog constantly hoping for a positive update. Rooting for you!
Also I know you feel like absolute death but the darker sense of humor is cracking me up. Silver lining to hitting rock bottom is becoming unintentionally hilarious. (Laugh to keep from crying!) So there’s that 🙂
Sending hugs and healing thoughts, I hope the new doctor and taking Humira more often works for you ::hug::
I have been reading your blog for a while now and it has truly made me understand the realness behind Crohn’s. I am so sorry that it is taking this effect. I don’t think you should say you “used” to run marathons, because you have and still will. This is just a obstacle that you will jump over when the time is right!!
Ali… I ran with Team Challenge this weekend, as you know. I am just getting around to reading this blog and I have to tell you this funny story… a fellow TC runner saw you that commented on my FB post and said she had a mini celebrity freak out moment. (You being her celebrity.) We think of you and talk about your blog often at training runs and you were definitely in our hearts this weekend. Wishing you a speedy healthy recovery, Love Team Challenge New England
Ali, I have been reading your blog for a while now but never commented. I am sure I am one of many. I wanted to add one more voice to the chorus of support for you. You ARE an excellent writer and WILL BE a fast runner again. And all of this pain will be a USED TO, hopefully much sooner than later. Sending you lots of positive thoughts across the internets …
Ali,
Nothing you wrote is in the slightest bit pathetic or dramatic. Your body is fighting you and you’re fighting back with everything you’ve got. Pain is real, and it obviously really frickin’ sucks. I’m sincerely sorry that you are going through this, and having to see this side of yourself (the less positive, fun side). I really believe everyone has both sides to themselves, you just prefer to be happy and optimistic, which is awesome. That it takes being THIS sick to bring you down says a lot about you. I have always admired your determination and energy when it comes to running and exercise. Those same qualities are still clearly evident, they are just being manifested in a different way. I hope the new doctor can give you some answers and, more importantly, some relief. Sending healing and love from Minnesota.
Robin
Ali, I won’t even pretend to understand what you’re going through right now, but I’m terribly sorry that you’re in so much pain.
I hope you find some real relief and effective treatment soon.
Hi Ali – I’ve been following your blog for a little over a year now, and have commented on occasion. I am really sorry you aren’t feeling any better, but I’m really glad to hear you have a new doctor who seems to be handling your treatment more aggressively. I was diagnosed with Crohn’s when I was 21. I had an awful flare about 4 years ago, much like the one you’re going through right now, and I can so relate to you. At the time, I couldn’t work, I had to move back home to live with my mother, my arthritis was so bad I was crawling to the bathroom, I had all the unsavory GI symptoms, hospital stays, lost a ton of weight (in a bad way), and a lot of my hair even fell out from malnutrition. The doc finally put me on Remicade and that has been working for the last four years. Today, I’m married, dog-mom to three pups, six months pregnant with my first baby, and thankfully in remission. And though I’m healthy these days, I’m still sort of haunted by that last flare and how temperamental this disease is. Anyway, thank you for being so courageous and honest about Crohn’s in your blog. One of the most painful things about my last flare (besides the physical discomfort) was how isolated and alone I felt during it all. I wish I had your blog back in 2009! I really hope and pray that the new meds start to work so you can get back to doing the things you love and telling us about them.
p.s. If I lived in NYC, I’d totally lend you a dog or two – they’re great to cuddle up against when you have stomach cramps.
Big fan of your blog here, and this post made my heart hurt so bad for you. Sending lots of love and prayers your way – there’s no words that can make you feel better but like someone said earlier, there’s a certain power of positive energy.
<3
Ali – I just recently caught up with your blog again, and I am so sorry that you’re experiencing another Crohn’s flare. My heart truly breaks for you! I just wanted to let you know that while you aren’t necessarily Ali on the Run right now, you’re still incredibly inspirational. You’re dealing with some really big things right now, and doing it with a grace that maybe you don’t feel but we all see. Fingers crossed that the 6-MP doesn’t take 3-6 months to work – it doesn’t always take that long for everyone, and I have that on good authority from one of my pharmacy professors! Sending lots of light and love your way. I know your “I used to’s” will be “I can’s” again soon!
The thing about life is that it moves forward. During the good times, life moves forward. During the bad times, life moves forward. Life can only move forward and things will get better. The state you are currently in does not define you, it is just something that is occupying your time.
This post breaks my heart. I was so hopeful Mom could fix you too.
Sending you lots of prayers and good wishes. I hope you find some relief soon. I am newly diagnosed with Crohn’s, and am on a low-residue diet and remicade for now. Hang in there.
Hi Ali,
My husband did tell not to suggest the SCD diet… I’m glad to hear that you have a little bit of relief. Joe, my husband, is currently taking Imuran with Humira it has offered him a little bit of hope and help. He was also taking Humira every other week, then bumped it to every week, and now he takes a double dose weekly. We keep you in our thoughts and hope you feel better soon. Sending positive energy your way.
Hi Alison, I recently came across your blog searching the internet about Crohn’s flares and it brought me to one of your recent posts. I too just started on Humira, this is my second time attempting this treatment, and just gave myself the 2nd loading dose Wednesday. I am trying it with Imuran this time to see if the two meds together will get me into remission. I hate to say that I enjoy your blog, but it is very relateable to me in my current condition. I hope we both get relief and remission soon.
Alison
Oh Ali. Grim. But look at the number of comments you have. You might feel like death but you’re loved!!!! Hang in there.
Back again with another suggestion, this time for nausea. I get nauseous from time to time because of migraines, and one thing that works for me is ginger. Ginger ale is good, but I also found some Ginger chewy candies online (at Soap.com – will deliver to your door in about 24 hours). They’re called Chimes. Sticky and a bit sweet but they really help me a lot. I usually keep a few in my purse.
Also, if you need to see more cute animal photos, feel free to check out the Tonks and Critters galleries on my Smugmug site, frogoutofwater.smugmug.com.
Here’s one:
http://www.smugmug.com/gallery/29448232_mfKCCq#!i=2515983865&k=BmRZwmx
I’ll keep you in my thoughts.
I have no perfect poetic words to say. I do think of you often and wish with all my wishiness you could catch a break!!
oh, Every time I check your website, I hope that things have started to move in the postitive direction for you, and it just isn’t, isn’t it?
I’m glad you have a new doctor, and I hope that things start moving in the good direction soon.
Thinking of you! Glad you got a new doctor – hopefully these new meds help!
Ugh, I am just gutted, literally, that you are having to go through all this. My really bad Crohns episode was back when I was a junior in HS &I thought it would never end, but it did. I am glad that you are surrounded by your boyfriend & family who love you & can take care of you. I understand on a professional level how upset you must feel having to go out on leave but in the long run, it’s a necessary step. You have many more productive, creative, imaginative work years to come!! Plus, more marathons & events and you WILL get back to that Engineer’s Gate! Hugs xx
Thinking of you
I know there’s nothing I can do to help, but I hope you know that I’m rooting for you. Your health will take a turn toward the better; you just don’t know the date yet. Keep your chin up, Ali. You’ll be okay 🙂
Ali, even though we’ve never met, I’ve been thinking of you so much. I have prayed for you often and hope that this new doctor will be able to find you some relief.
I was just diagnosed with ulcerative colitis in November after spending a week in the hospital (and many weeks before that feeling miserable). After 3 months of prednisone, I started Humira, and I’m taking it once a week now and have been since March. I have a question for you: when you did feel good (which I am sure seems like forever ago), did you have any Crohn’s symptoms at all? I am just trying to figure out if I am going to get any better than where I am now (still having abdominal pain and cramping and making 2-3 trips to the bathroom a day), or if this is as good as it gets with IBD. I have read conflicting things about what remission really is and so was wondering what your experience is when you’re not in a flare. I am trying to get back into running but find that running even 2 miles sends me to the bathroom not long after I finish. Did you have this problem when you weren’t in a flare?
Sorry if that’s too many questions. I will keep praying and keep hoping that you find the right treatment for you!
I imagine remission is different for everyone, but for me personally, when I felt good, I mostly felt great. There were times when my stomach would act up here and there (urgent mid-run bathroom stops!) but overall, when I wasn’t flaring, I was living life normally and happily. I hope you get there!
Ok, thanks! My doctor said that I should be feeling better than this, but then when I read posts by people like you who are going through absolute hell, I feel like I am really doing pretty good, so I don’t know. I am going to the IBD Clinic at Vanderbilt at the end of the month and will be curious to see what they say.
My heart is breaking for you. You are so strong, this disease will not break you…YOU WILL overcome this. All of my prayers and good, happy, puppy dog thoughts coming your way.
I hate that you’re still so miserable. I understand, though. No one can understand the depression and anger that comes along with the pain if they don’t also have the disease. I’m praying for a miracle!
Hi Ali
I get teary reading your blog posts as I know what you are going through because of all my son has been through. And I love how honest and bold you are, letting people know their diet advice is going to kill you! I know people are trying to be helpful but much of it only makes you feel worse.
I am having a my fundraiser this weekend to raise money for CCFA and research as I will never give up and know there will be more treatments and a cure soon. The science is very frustrating to me too.
Anyway, I know you will find the right treatment and things will get better.
Stacy
Oh, Ali. I’m so sorry. I’ll keep you in my thoughts, and I really hope this new doctor has the secret to your health. xoxo
I’ve been a silent reader of your blog for a long time, and I just wanted to chime in to say I’m thinking about you and rooting for you!
Hi Ali,
Just wanted to say I’m wishing you well and hoping everything turns around for you very soon. Your recent posts are heartbreaking and a reminder of what us Crohn’s patients have to deal with many times throughout our lives.
I have had Crohn’s disease for 9 years (I’m 24) and have gone through a journey similar to yours. I’ve had many flares (basically during any important/stressful event). Going to university, exams at university, university graduation (you get the picture). Two years ago I had a pretty bad flare up and was sick for 5 months. I couldn’t leave my room, let alone my bed the entire time. The doctor increased my medication, put me on steroids and nothing worked. Turns out not only did I have crohn’s, I had crohn’s/colitis (classic overachiever just like you) and I also had acquired c diff somehow. After all that I was put on antibiotics and then remicade and it finally gave me relief. I’ve been in remission ever since. I wanted to write to you to let you know that as hard as it is (and believe me, I cried almost every day) there are lots of us out there like you and praying that your flare will end!
I was on Imuran for 7 years (which I think is the same as 6MP) and it worked great for me for that time. I was nauseous for the first few months but it went away after that and was very tolerable. I’m not on it anymore, since my doctor told me I’m an “Imuran failure” (doctors are so sensitive) but when I was a had no severe flares.
Praying that the new meds kick in!
Ali,
So, so, so sorry to hear this. We are all rooting for you!
Tyler is getting more handsome each day! Sending you lots of love and hugs. xoxo
Oh, Ali, I keep hoping I’m going to open your blog to read about how much ass you’re kicking. I know there’s really nothing I can say or do that would make you feel better (short of coming up with a cure), but know my puppy and I are sending you big hugs and hoping things start to turn around for you soon.
Like everyone else (and yourself, I’m sure), I wanted this to be the turn around post, the “hey guys I’m kinda feeling better” post. I’m still pulling for you, though, and I know that post will come someday. Hopefully it will be sooner rather than later. I can’t pretend to know what you’re going through, but I do think of you, esp. when I wear my I <3 Sweat shirt. I also think about what a gift it is that I get to sweat when so many people can't. Until you can sweat with us (from cardio, not Crohn's), I'll keep sending positive vibes from California.
And after this ordeal, I think you should totally go to Hawaii to celebrate. 😉
Hi Ali, I’m a silent follower of your blog since I started running about 2 years ago. Really really sorry to read this post. I have lupus, another form of autoimmune disease which attacks the kidneys and joints so I know about the steriods and flairs up and all that crap. Just 3 days ago I had one of the worse joint pains in while only I had mine on the wrist. Couldn’t bend them at all without screaming the roof down. Brushing teeth was a torture and I could barely lift up a cup of water to drink. So when I read about your joints pains, I knew just how awful that was. Really hope your new treatment will start working soon. Speedy recovery! Come back soon, old Ali!!
Gah. I am so sorry to read that your health is not improving. I hope you feel better soon. ANd I know you probably want to punch me now, but I just have to say this: If I remember right you don’t digest corn well, I have been on a gluten free diet and many things were made with corn flour… just thinking.
You’re right: Corn is my nemesis! I can’t do whole corn like corn on the cob (so sad in summertime) or popcorn, but broken-down corn products seem to be OK. I think. At this point, everything kills me!
🙁 get well soon. You deserve to be back at your … “profile picture” you!! (love the pic!)
I am so sorry!!! But hopefully this new doctor can help you out.
Ali, I’m sorry you still feel this way, and I’m rooting for your intestines!
I have no freakin’ clue what’s the “right” thing to say, but I saw this the other day. And it reminded me of your “I’m sorry I’m such a downer lately” posts. Because really, you should NOT be sorry. But I’ll let Dyana tell you why. 🙂
http://tedxtalks.ted.com/video/TEDxOjaiWomen-Dyana-Valentine-I
Ali, I wish I could help you somehow…. Just don ´t stop believing in brighter tomorrows. They will definitely come 😉
I stalk to see if you’ve updated. I’m SO sad to see what this sickness has done to you. I’m incredibly sorry you are feeling so horrible. You have random people on your side. I know that really doesn’t help but…we’re hangin’ out here anyway.
Thinking of you, Ali!
Is Brian back? Or do you have someone staying with you, taking care of you and stuff? I wish you were nearer and I could help out.
Yes, he’s back and has been cooking me dinner. Don’t you worry!
Reading your posts really does renew my appreciation for my health. Kick that stupid disease in the gut, Ali. Kick it hard. And kick it soon.
So, I haven’t seen or spoken to you in years, but I’ve been following your blog lately and your struggles have been breaking my heart. Told my mom and she called a bunch of family members and apparently, dozens of them have lit candles in their churches to pray for your health. I’m not religious, but I believe in positive energy and just wanted to let you know you’re getting a huge influx of it from random Domincan churches. Hope things start to improve for you.
Cipriana! This was the nicest thing of all-time. I am so blown away by your comment and by the kindness of you, your mom and her friends. Seriously…I read your comment during one of my bathroom trips last night (meh, sorry, but true) and it made me cry. THANK YOU for thinking of me and for reaching out. Please pass along my thanks to your mom, too. Simply amazing.
I’ve been reading your blog for a few months now and wanted to leave this first comment to say I’m so, SO sorry you are feeling this badly!
I had food poisoning over the weekend and as I was curled on my bathroom floor I actually thought of you… that’s probably totally weird, but it made me be like suck it up, buttercup, it could be so much worse.
Hopefully something starts working for you soon and wishing you all the best. Sending you lots of positivity and healthy thoughts from a random internet stranger!
Oh Ali, I’m so sorry. We are all missing your positive attitude and wish you a speedy recovery!
I am a high school English teacher and this morning as I walked into school I realized that if I didn’t book it to the faculty bathroom, I would have an accident. In my teal pants. In front of kids with phones with access to Facebook and Twitter. I would be that teacher. You know. The one that s*** her pants in front of her students. Well last year I had this happen, the bathroom sprint on a regular basis and by the end of the school year I realized something was wrong with me. I made an appt with my doctor and of course began to self-diagnosis on-line. That’s how I came across your blog. I am a runner too and really connected ith your honesty. The good and bad all the pit stops in between. Since then I have been diagnosed with Non-Celiac IBS and follow a g-free and lactose free diet. And I feel good. Mostly. The bathroom sprint today is more of a rarity. But my point is that you inspired me to get better and find out what makes me feel good. You also made me feel like it is ok to tAlk about those bathroom sprints and not be so embarrassed. Even when 1200 high school kids could document my accident. You really have made a positive difference in my life and I hope you get that karma soon. You rock.
Oh Ali – I have no idea what you are going through and I wish there was something I could do to help! (If you watch Big Bang Theory -great show…but then again I am a physics teacher- I would sing you “Soft Kitty” as it seems to have magical calming and healing powers. In honor of a Thursday I just wanted to let you know that I am thankful you have a new doctor because it sounds like he has given you new hope and I am thankful that you have a new medicine because I so badly want you to feel better and as many others have said I keep checking hoping to see the wonderful post saying you are finally feeling better!
Hugs from a random internet stranger
http://www.youtube.com/watch?v=sIp77PUvLTE
Man, I can’t even…..this just sucks. My Hubby got real sick a few years ago and had to go on medical leave, and despite trying to block that time from my mind, I can remember the overall feelings of despair, uncertainty, and sometimes even hopelessness. I know life isn’t fair, but this just blows. I’m so sorry this is happening to you. It’s just not right. I’m rooting for you.
Crohn’s is not the least bit convenient! That has been my mantra for the past year, as I too have been battling a never ending flare! I hate you are are feeling so yucky. Just like you, the Remicade stopped working for me. Humira and Cimzia never started working, and I finally lost my colon. Have you tried Tysabri? My GI has me taking something called IVIG, not much research on it for Crohn’s but you should look it up. It is infused and is basically a ton of healthy donors’ antibodies. I also take Imuran (6mp’s sister) and it causes me to feel nauseous so I’m assuming 6mp can cause the same. I hope you feel better soon and hopefully in the near future, we can all say, “I used to have Crohn’s!”
I just started researching Tysabri, actually, and brought it up with my doctor as our next step if the Humira never kicks in. We talked about those scary side effects, and he did the blood test to see if I have the gene or whatever that it is could lead to the “deadly and incurable brain disease” effect they worry about. So it’s definitely an option for me…as long as I don’t have that gene!
I don’t mean to be a comment lurker but I’m actually on Tysabri (I have MS). I have my 56th infusion of it on Monday so if you have any questions about the side effects or anything else about it I’d be more than happy to answer them!
Thank you for chiming in, Steph! I assume it’s working out for you? That’s great!
It’s been a game changer for me since I don’t seem to respond to anything else, including steroids. The PML part (deadly brain disease) is obviously a concern but I get a blood test every 6 months to check for the presence of the JC virus (which increases the risk of PML) to make sure I haven’t been exposed. If you haven’t been exposed to the JC virus yet the chances of developing PML are so so very small that it’s not something I worry about anymore. I’ve found that I don’t have any real side effects anymore, but when I first started it I would feel a little tired or achy the next day but nothing major.
Sending you so much love and lots of wishes towards getting back to the “I am”s and “I do”s. xx, eileen
Awww…I just want to give you a big hug and somehow give you the biggest band-aid ever to help it all feel better. You have become one of my favorite bloggers and I wish nothing but the best for you. I will be praying for you, Ali. *hugs*
Oh Ali hang in there. I’ve got you in my thoughts and prayers. Me and my cute puppy are sending good vibes your way.
Hi Ali,
I’ve read your blog forever but never commented before. I’m SO sorry that your disease is so awful right now. I’m a med student who’s pretty tired or studying right now (to be honest) I won’t pretend to know more than all the doctors you’ve seen based on 2 years of medical education but hearing your story really inspires me to keep studying and working hard. Your blog has always made me laugh and has been something I felt I could really relate to (like we would be friends in real life) so it makes me so sad (and kinda angry) that this is what you’re going through. Awesome people like you don’t deserve shitty things like Crohn’s. I’m thinking of you!
I am so, so sorry. I cannot imagine and I will not even try to relate or empathize <3 UGH. STUPID ALI'S BODY. STOP IT!
Huge hugs to you. I really hope this doctor can help.
There is not much for anyone to say that could possibly heal you, but just sending out my warm wishes to you and giving you a virtual hug
Oh Ali, my heart is absolutely breaking for you. All I can say is that you are in my prayers.
Dear Ali, I’ve read your blog for a year now. I never post but I have been checking back often to see how you are doing. I know these words are of no comfort, but please know you have so many people you don’t even know rooting for you! I hope the new drugs help and am saying prayers for your quick recovery!
When I see that you’ve posted I always read it first hoping for good news. I am so so sad that things are worse. Please let that new doctor know what he’s doing and help you!
Ali, I’ve been reading your blog for a while now – in fact you gave me hope when I was going through something similar with my Crohns in the last few months! I was on Humira for a few years, and although it was slow to start once it got things under control for me it worked well – I also had to take it once a week though to reap the benefits!! I have my fingers crossed for you 🙂
Also you made me laugh today with your comment about your eyebrows – I do the same, and no word of a lie it was the first place I went after I was discharged from the hospital I made my roommate take me to get them done – it made me feel human again!
And I totally understand your frustration with work – I had to do the same – but I’m back now and so grateful to work with the people I do, adding about your coworkes as soon as you are able to returning will bead though you never left (and I’m sure they will find a drug combo that will work for you soon and this will hopefully be over sooner than you think!).
One last thing – I feel for you with the joint pain, I just had the pleasure of experiencing that for the first time with my most recent flare – nothing like adding insult to injury! I just got to see my rheumatologist this week for the first time out of the hospital and he said once the stomach is under control the joints should follow suit!
Rooting for your speedy recovery from this not-so-small bump in the road!!!
so sorry to read this, sending virtual hugs and prayers and hopes that this will some day soon be in your distant path, never to return again xo
As my grandmother used to say (and it did make me feel a little better), “Dear little soul”.
I have never experienced a chronic illness like yours, but I have experienced excruciating pain (ruptured discs) and near-paralysis. A wheelchair would be great, but if that’s not available, try a rolling office chair (for moving around the apartment and, if you have an elevator in your building, for getting out of the building to the taxi that takes you to the doctor). When my back went out, it took a couple of days for my husband and me to realize how to transport me to the doctor. He ended up rolling me down Wall Street in that chair – this was in early 2009, so I looked like I was resisting an I Bank layoff. But it worked.
I look for care bears in the airplane clouds too! lol. I’m sooo glad you found a new doc
Ali I am so sorry you are feeling this badly for so long, and the ankle too. I hope this new doctor is a great one – I want to know more about what he thought about your entire situation. I hope you start to feel improvements soon.
The SCD is a waste of time. Go ahead and punch people when they suggest it to you, and tell them I ok’d it.
Stumbled upon your blog a few months ago when I started taking up running (or do cool people just say running? not sure what is the right way to say it?) and realized we were both Bobcats! Your blog actually inspired me to not give up on running even in the beginning when I hated it. I have never met you yet might have (*definitely did) teared up a little while reading this. It breaks my heart that you are not getting better yet your honesty and rawness is what keeps me coming back to your blog. So all I can do, which probably isn’t enough, is to send you TONS of positive thoughts, energy and prayers!!!!! And if I happen to pass a wishing well in NYC, my penny will be in your honor!
Sending lots of loving thoughts your way, friend. I wish there was a way to collect health and transfer it to someone else, because I know there are so many people that would love to do anything they could to help you right now. As hard as it is, keep your head up…I’m rooting so hard for you.
I just want to say thank you so much for blogging. With every post, regardless of content, you remind me that I need to enjoy life’s many delights when I can, that I’m not alone when I’m in pain, that there’s an entire supportive community always at our fingertips. I can’t even fathom how difficult it must be to live like you’re living right now and also to write about it and share it with the world. But your words always make a huge, immediate difference in my mindset.
Hope it all works out! HUGE hugs for support! A pill that’s a camera, now that’s new to me. I really hope you feel better and all goes well.
Ali, I check your blog every day in hope to see that you are feeling better and every time i check and see that there isn’t a new post i think ‘damn no news in definitely not good news’. I also think there is light at the end of the ‘tunnel’ but the tunnel is too damn long; I know there is nothing I can to help but here are some links to cute puppies because puppies are awesome 🙂
http://i.imgur.com/XeGT6Vl.jpg
http://i.imgur.com/Fy6fJ.jpg
http://i.imgur.com/Q3UDdf9.jpg
I started reading your blog a couple months ago. Most blogs I read regularly are about running, fitness and delicious food, but I find myself checking Ali on the Run daily for an update on how you are doing. Creepy? (It didn’t feel like it until I wrote it). I am thinking of you and wishing you all the best. Although it may not feel like it now, your story is inspirational. Thank you for sharing and keep fighting! Sending you healthy vibes!
I wish i could take this away from you, as I’m sure your parents and family members do too. I can’t even imagine how you have to feel every day. Hopefully this new doctor gets things rolling and you can get your life back!
Wish I had something more to offer than healthy, healing thoughts. I hope the new treatments start working their magic soon!
This post really got to me. My thoughts are with you and I hope you get better soon.
Love and hugs from a complete stranger– seriously, the Internet is rooting for you! Because I already have (and love!) an ‘I Love Sweat’ t-shirt, I just made a donation to the Crohn’s and Colitis Foundation of America— I know it’s not giving directly to you, but hopefully it will help in some small way!
Ali, I so much feel your pain and I really hope this new doctor is your life saver. Humira and 6mp work well together. There is also a new drug that was just approved – simponi has had great results with 6mp too. Remicade stopped working for me only after 5 infusions so now I’m on Imuran and waiting for it to kick in. Still have 2-3 more months to see improvement. I wonder where I’ll be then…
It’s interesting you’ve tried GF and dairy free and it didn’t help much. Everyone was telling me about the autoimmune paleo protocol so I’m finally trying it… Nothing crazy exciting to report yet except I really want cake!
I think about you everyday, even though I don’t know you. I check to see if you’ve updated and I hope one day we’ll see a recovering, pain free, and happy Ali soon!
I am so sorry!
‘Used to’ goes both ways. I used to be unable to walk. I used to be in constant pain. I used to throw up my meds. Here’s to your current state becoming your new ‘used to’.
OH-EM-GEEE!!!!! I refresh your blog page multiple times a day because i want to see that post that says the humira is finally working. So after the 9am check and no update i tried again at 2pm. There it was….your latest post. I’m so sad:( I really want your next post to be a Used To part 2. The one that says “I used to be so sick. I used to be on medical leave.” I’m praying with every morsel of my healthy self that your remission comes ASAP. I truly feel so guilty for not feeling sick. On a side note i made the little heart symbol thingy with my hands as i crossed the finish line at the brooklyn half a few weeks ago as i thought of you and my intention was to share it with you. So don’t you know when i went to marathonfoto none of my finish line photos made it!!!! I checked back to the site for 2 entire weeks just in case. 🙁 It’s the thought that counts i suppose. I wanted you to know you were in my thoughts and in my heart as i ran it….oh well. epic fail.
Sally! Your comment got me all teary-eyed. First, CONGRATULATIONS on the Brooklyn Half! I hope you had an awesome race. And second, thank you so much for the incredibly sweet and thoughtful gesture. That’s so cool of you. Finally, don’t you dare feel guilty for NOT being sick. Just appreciate and enjoy every minute of it!!
So, I loved the Care Bears, and while I can’t say I have ever looked for them in the clouds (by the way, I’m starting NOW), it did remind me of the cartoon theme song. So I found this little gem for you, Ali, because it reminds me so much of you are feeling: http://www.youtube.com/watch?v=jXDetZOn_Bo
Hopefully it puts a little smile on your face:)
While I know your heart is sad that you had to take leave from work, the really great thing about it is that it will be waiting for you when you are healed! Hugs and prayers.
Haha! That video is basically my life. Except that I’m not a cartoon bear. But everything else is right on par.
Ali, I’m so sorry you’re still feeling pretty damn crappy. 🙁 I hope the new doctor and meds help. If I can help in any way, let me know.
I am just so sorry about all of this, Ali, and I really hope the new treatment works. I’m glad you’ve found a doctor you like better. And that you’ve actually, you know, been able to get in to see a doctor… I cannot believe that they made you wait so long!! I am thinking of you and sending positive thoughts and baby and puppy cuddles toward your apartment.
hi Ali, I’ve been reading your blog for awhile now, and I think you are awesome. I’m so sorry about what you’re going through. wish I had something to say that would make you feel better, but just know that we are all thinking about you and wishing you well.
My mom always tells us, “if you don’t have your health, you have nothing”. I pray your new doctor gives you some much needed help and healing.
Hugs. I’m so sorry all of this keeps happening. I’m glad you have a new doctor who is doing more tests.
I check your blog every day with the hope that you’ve turned a corner. It breaks my heart for you that things are still so, so bad. Sending you Texas-sized hugs and tummy-soothing thoughts. Be well. Stupid Crohn’s.
I wish I could give you a magic cure or a puppy (that would walk itself and be impressively well-behaved) but since I can’t …. I’m glad you have a new doctor and a new plan and I will be crossing my fingers that things look up for you immediately.
I’m a long-time lurker on your blog, but I wanted to say that I have been thinking about you recently and wondering how you were doing (is that weird? The internet really is so weird sometimes). I’m so sorry to hear you’re not getting any better, but I’ve got my fingers crossed for you that the new treatments and new doctor start working!
I’m sure the disability/med leave from work is heartbreaking – but it’s just a leave! You will absolutely go back stronger and keep growing your amazing career! A tip from an HR perspective: keep in touch with your coworkers (if it doesn’t kill you to do so when you can’t be there with them), it makes getting back into it so much easier if you have some idea of what was going on while you were gone.
Hope you are turning this thing around soon. My friend was just in the hospital for 37 days due to Crohns. I have been following both of you hoping for some relief in both of your lives. Sorry you are going through this. Hope the new meds work some wonders. {{ hugs }}
I’m so sorry you’re going through such an awful time. 🙁 Thank you for your reminder to never take your health for granted. As the daughter of someone who also has a chronic & unpredictable disease (MS), I know you are so right. I love your blog and hope that things take a brighter turn for you really soon.
Hoping the new meds kick in soon and you start to feel somewhat better. I miss the happy posts. Feel better!
Long time reader, don’t think I’ve commented before though. Just wanted to say I’m so sorry for what your going through and will keep you in my thoughts!
When I was 5, I went on my first plane ride. My mom spent the entire time pointing to clouds and saying, “Look! There’s a care bear, don’t you see it??!” I didn’t (obvi?), but lied and said I did because it made me feel bad that I couldn’t see them. I hope you feel better soon!!
Oh my gosh, that’s adorable.
When I was about 5, I took a plane ride by myself to visit my cousins (parenting was different back in the 70s). We flew over a large, puffy clouded region. I named this puffy-floored place “gumdrop heaven”
I have bared this embarrassing fact to hopefully bring a smile to your face, Ali. You are often in my thoughts and I hope you feel better soon.
ps- I’m the person who accosted you in the Union Square Crunch locker room after spin class a few months ago =)
I don’t really know what else to say except that sucks and I’m sorry.
Hang in there.
I want to send you the biggest virtual hug ever! I hope everything starts working soon and you start feeling better ASAP and can once again say “I run marathons!”
Ali, I’m so sorry. I teared up while reading this. I’m rooting for you and hoping you feel better soon.
I was wondering when we would hear from you again, and I wish there was better news….but it sounds like you’re on the right track with the new doctor and a plan. Plans are good. Really good! Keep your head up Ali. 🙂
Ali-
I only recently found your blog after spending 10 days in the hospital for a bad ulcerative colitis flare-high dose steroids, blood transfusion, doctors threatening to remove my colon, remicade, the works. I don’t pretend to know everything you’re going through, but your story breaks my heart. I’ll be thinking of you and hoping the drugs work their magic soon. Also, I’m going to request that camera pill test next time, how cool! I just spent a week at the Mayo Clinic for follow up tests and between the 3 bottles of barium for the MRI and then a colonoscopy I was not the most pleasant patient, to say the least.
I’m glad you found a good new doctor, but if you ever get the chance to see the GI docs at Mayo-Rochester clinic, they are amazing. I’ve had such a hard time finding a doctor I liked and they were fantastic-great specialists for IBD, well-informed on all the latest research, and incredibly thorough. You’re GOING to beat this!
Thanks so much for your comment, Sarah. It sounds like you’ve been through a bit of hell yourself and I’m so sorry. Did the transfusions, steroids, Remicade, etc., work for you? I really hope you’re feeling well now. That all just sounds awful.
Also, I will never do an MRI again, I swear. I did one when I was in the hospital back in August and it was the absolute worst. I already felt terrible because I was flaring, and the barium made me SO sick (I threw up all over the wall of my hospital room after the procedure — oops). Plus having that coil wrapped around your already in-so-much-pain stomach? It was just the worst. So power to you for getting through it!
The remicade has been a lifesaver for me and has put me into remission for now, and I finally tapered off steriods. WHOO moon face be gone! There is still the constant fear of developing the antibodies to remicade, and the mental part of these diseases is the always the hardest part, I think. 6MP is supposed to work wonders too, so good luck with it! I remember feeling SO hopeless when nothing was working. And I totally agree with your last line about appreciating your health-I took it for granted until I got sick.
Yeah, no more MRIs. How can they not make the barium taste a LITTLE better??
I don’t usually comment – though I’ve lurked for years! – but I wanted to say I’m rooting for you! I hope you get better soon.
This brings tears to my eyes. I have been this sick and it is the worst. How is there no cure for this? I am currently on 6MP and it’s been a game changer for me when nothing else would work. You don’t want to hear this (I sure didn’t) but it takes time. It can take lots of time but then slowly it can make huge improvements. Humira worked for awhile for me but then I was getting horrible hives so decided it was time to stop. I started 6MP after that and it has worked. I really do hope you feel better soon.
Ugh I wish I could find a cure for you. Maybe I should quit my accounting job and head to med school (sound more interesting than tax returns anyways). Send you as much positive energy as I can and hoping for the day that you can wake up and say “I feel better” is in the near future.
I had to take FMLA from my job the first year out of college. It took me a couple days to get over the “holy crap how did it get to this point…when did it get serious enough for this to actually be necessary?!” but in the end, not having the stress of not missing work (as in, it’s easier when it’s officially “I am not at work”) was helpful.
Take care of yourself…and I’m glad you’re seeing a new guy. It seemed weird to me that the last doctor was just doing a “wait and see” approach when things were progressing (in the wrong direction) so steadily. And camera pill! Oh boy!!
I’m so sorry to hear how terrible you are feeling right now. But it does make me feel better knowing that I’m raising money for the CCFA to hopefully help find a cure for this madness!
O Ali, my heart is breaking for you. I read this and cried at my office. I know you feel weak, but you are strong, and a fighter. I am so sorry you are going through this. I hope this new doctor can help you kick this flare up’s ass.
I know nothing I can say will make you feel better but I do hope you youtube mascot bloopers because I think it might make you smile.
Just wanted to say that I’m thinking of you and hoping that things start looking up! Crossing my fingers for the new doctor + regimen. 🙂
Oh so so sad and sorry to hear this Ali. sending you love.
Hi Ali, I’m on 6MP and it’s made my day to day symptoms more bearable. I still get pains in my abdomen, but it’s at least manageable. I hope it works for you! Sending hugs across the pond.
Thanks, Lilly.
Question about the 6MP: Does it make you nauseous by any chance? Since I started it (I take it at night), I feel SUPER nauseous all night. I read a few things on different forums from people saying it happened to them — just wondering if it’s all in my head now.
I get the odd feeling of nausea every now and again, usually with a bout of burping (not at all nice), but my docs gave me some Metoclopramide to combat the sickness.
Yup, I had to switch to imuran which still makes me sick.
Ali, I started 6-MP 10 months ago. It certainly didn’t take 3-6 months to kick in so hopefully you will start feeling the effects soon. I started out taking it at night as well and I would feel nauseous. I figured out that it made me burp and when you are lying down you don’t burb as easily or naturally so it can make you feel nauseous. Think about burping a baby after they get fed… same kind of deal. I tried propping myself up on pillows to be in more of a sitting position while sleeping and it worked okay. Eventually I switched to taking it in the morning and the nausea went away within a few days. Maybe try that? I sure hope you feel better soon!
Good tip, thanks! I was afraid to take it in the morning because I figured it would make me nauseous during the day instead of while I’m sleeping. Not the case for you?
Definitely not. I made a conscious effort to take it with food (usually a banana) for the first 2-3 weeks because I was afraid of the nausea but I eventually weened myself off of that and now I take it daily without food and have no problems. It has done wonders for me. It has made some of my eyebrows fall out in times of extreme stress (lucky for you that means no more plucking!) but otherwise I love it. I am praying that it works for you soon.
I’ve been thinking of you! I am SO SO SO sorry you’re going through this. I hope this new doc figures out how to make you feel good and happy again! HUGS!!!
I have such empathy and smpathy for you I don’t think I have words to express them. I’ve been there, you are describing the same thing I went through 25 years ago with my Crohns. I know it’s hard (I mean I REALLY know it’s hard) because I’ve been there. Try everything, keep notes, make sure you take care of your emotional state. So from somebody that’s been there, I will tell you that you will get better. Really.
Much love. Hope you feel better soon.
Still thinking of you. I don’t know shit about medicine so I can’t tell you for sure it will get better, but in my heart I know there are better days for you in the future. Hugs.
<3
Exactly what Danielle said….. HUGE VIRTUAL HUG. I’d say hang in there, but this post breaks my heart. Here’s hoping you’re on your way to turning a (healthy) corner!
Ugh, I am so sorry to hear this update, especially the part about taking medical leave. 🙁 🙁 🙁 I don’t really know what to say except that I hope your illness lets up soon enough so you can have your life back. I know I don’t comment every time, but I’m continuing to think about you. 🙁
Thinking of you, dear. I’m so sorry you’re suffering so. Wishing you brighter and lighter days soon! Until then, a BIG (((((((((((((((hug)))))))))))))))).