It felt strange not to acknowledge what happened on the day of the Boston Marathon here. I kept feeling like, “I blog about running…I should have an opinion. I should have feelings. And I should share them…right?”
But every time I tried to find the words, I was at a loss.
I didn’t have anything to say or add to the discussion, so I didn’t want to force it. I just wanted to be quiet and take it all in.
I didn’t have personal accounts about my Boston Marathon memories. I’ve never been to the race — either to run it (ha) or to spectate — and I don’t have a memory-filled picture of myself posing by the finish line. Although I have friends and family in the area, they were all immediately reachable and perfectly safe following the bombings.
My loved ones were so lucky, and for that, I am so lucky.
And on Friday night, I, along with the rest of the world, cheered as the courageously heroic — and seemingly fearless — members of the Boston Police Department, SWAT teams, FBI and more embarked on a successful manhunt.
I can’t believe we live in a world where “manhunts” are something we watch on TV…as in the news.
That was my big takeaway all last week: “I can’t believe it.” I think that’s why I had such a hard time writing and putting my thoughts together. I was in disbelief and I kept — and keep — asking, “Why?” I just don’t understand.
During a week of so much trauma around the world, I was also facing a battle at home. A battle I continue to fight after four long months.
I am getting sicker by the day.
When we last talked, I was about to wrap up my 10-day juice regimen and I was so excited at the prospect of sprouted wheat toast and some hummus. That first bite was as amazing as I had imagined.
But as soon as I started eating again, the fevers came back. The chills, the night sweats, the countless pajama changes, the 2 AM showers…none of it has ceased.
I saw my doctor last Wednesday, and I sat in his office sobbing, begging him to do something. He didn’t want to start me on new medicine without doing more tests — of course — so I spent Friday fasting and then prepping for a colonoscopy. Funnest ever!
On Saturday morning, I made my way to Mount Sinai for a colonoscopy and upper endoscopy. Everything went fine, and it was actually nice to get knocked out for a bit and get a little nap. I haven’t slept for more than an hour at a time in at least a week, so I appreciated the drug-induced rest.
The tests revealed that, as suspected, my disease has gotten much worse. I have an official diagnosis of Crohn’s-Colitis, as determined by where the disease is located in my body. Dr. Has Seen Too Much Of Me Now said things look worst in my sigmoid colon, where I have several ulcers and severe inflammation. The disease has also spread to the transverse colon.
So that explains the pain.
I can’t sleep at night in part because of the chills, sweats and 102-degree-plus fevers, but I also can’t get comfortable. I’m OK for a bit if I lay flat on my back, but if I so much as rotate an inch to the side, I’m into the fetal position in pain and running for the bathroom.
Needless to say I haven’t been handling this very well.
I’m not able to leave the apartment, let alone go to work, and I’m an emotional wreck. I have been sitting on my couch for a month now watching more crap TV than I ever hoped to see. Ryan Lochte has a reality show. So do the Jonas brothers. One of them at least.
I miss my friends. I miss my life. I feel like the rest of the world has kept turning and moving along just fine while I’m in this little prison, watching from the outside (or, you know, Twitter…).
I also feel like this is a constant waiting game. As it turns out, I’m not exactly a qualified “medical emergency,” so things are happening at a painfully slow pace. Even though Dr. Happy To Scope Me On A Saturday said my disease went “from a 4 last summer to an 8 now,” that doesn’t mean I can get a follow-up appointment any sooner.
So now I wait until he can see me in his office and we talk about treatment plans. My two options are Humira, which is an immunosuppresant that requires a mega-fun regular self-injection, or enrolling in a clinical trial and agreeing to be a guinea pig.
Neither option is particularly tempting.
Neither option provides the immediate relief I am so desperate for.
I’m in a bit of disbelief that this is still going on. I am now being incredibly diligent about my diet in hopes that that will help while I wait for medicinal relief. Beyond that, I’m at a loss, I’m in pain and, frankly, I’m in a bit of a dark place. I haven’t felt like myself for so long, and the only reason I know it’s springtime is from the pretty cherry blossom pictures people have posted on Facebook. I am missing out on life, and that makes me so sad.
The one upside (yes, I’m absolutely forcing myself to find an upside amidst all this) is that I have incredible friends and they have been there for me more than ever. So for that I’m deeply thankful, grateful and appreciative. I think I would have given up on me a long time ago, and I love my friends for sticking around and offering puppy visits.
I never thought this disease would really affect my life. I’ve never been sick like this or been in such constant pain, discomfort and emotional distress like this. I always thought, “I have Crohn’s, I get flare-ups sometimes, but it’s no big deal because I’m a really positive person and my excitement for life makes things better!”
Here’s hoping that girl comes back soon. I remember her being really super fun.
I’m so sorry to hear you’re feeling crappy. I’m in a similar boat and felt like your were reading my mind when you talked about missing out on life as we wait to figure this disease out. I had a sweet colonoscopy on Thursday (absolutely love the drug induced nap) and my situation has gone from mild-moderate to severe over the last year as well. What the hell is happening to us crohnies in 2013?! Although this comment has zero ideas or tips on how to help (I’ve run out of ideas) I just wanted to let you know that there is someone else who totally feels your misery. Sometimes it helps me to know that I’m not the only 26 year old sitting in on a Friday night watching re-runs of two and a half men : ). Sending positive vibes your way and hopefully the Humira kicks in soon! The worst part is not being able to be active too. I signed up for TeamChallenge for a race in July and the only training I’ve been getting is sprinting from the couch to the bathroom! Keep your head up.. it WILL get better. Sending Hugs,
Ali, since my 14-year-old son was diagnosed with advanced Crohn’s last August, we have a mantra, “We’ll figure this out.” Thank you for sharing your hopes and fears, light and darkness. You will figure this out. Stay Ali Strong!
I hope you feel better. As strange as this sounds, I was thinking about you when I was running this morning and really had to poop. You will get better, hopefully sooner rather than later.
I was honestly hoping I wouldn’t read this update. Been thinking about you, and was hoping you were feeling better. Very, very sorry to hear things have not gotten better since you last post. Rest and heal. Best wishes.
Hi Ali, my boss just sent your blog along to me. I also have crohn’s and 2013 has been awful. I feel your pain — every symptom you have, thoughts, emotions –I’m going through it now too. I was hospitalized twice in Feb for multiple weeks and left feeling like a new person. I had a complete blockage but thankfully I did not need surgery! I started humira right after that and all was going great, however, I was still on the steroids. As I got lower and lower on my steroid dosage the humira didn’t seem to last the two weeks it should. This week I am starting every week humira shots. Fingers crossed! Knowing that I can be pain free makes it so much worse to be in such pain. The needle terrified me but I am able to do it myself (in my thigh) it burns a little but seriously is not too bad especially when you are used to dealing with this pain. Hang in there!
Oh, so sorry to hear about your illness. Really hope you can get the medical help you need fast.
I am so sorry you’re not feeling better. I checked your blog a few times last week and it was never to hear your thoughts on the marathon – i just wanted to see if you were feeling better!!! You’re totally my crohns-colotis hero – you have suffered so much in recent months but always with a lot of grace and humor and wonderfulness. So at least know what a great example you are. I am from Boston and we had golden retrievers come to Newbury St the other day – I wish I could send one to you, I know they would brighten your day. Hope with the sunshine you will start to feel better.
p.s. – have you ever tried an electric blanket? i know you sweat and all, but when you’re not sweating, they feel really good on the belly.
I’ve been absent from the web for a while and this is the first post I’ve read in MONTHS! I’m very sorry to read your condition is worsening. I would feel even more regretful if I didn’t share what I’ve learned/heard about a raw diet. I’ve heard raw vegan diets can cure just about ANYTHING! Dan posts videos on YouTube under the name The Life Regenerator – and I’ve watched several videos where he talks about reversing Crohn’s. There is hope for you! Whatever your method of treatment, I just hope it comes with speedy healing and you get back to your normal routine ASAP. My thoughts and prayers are with you.
Too often those lucky enough to be in good health take little things like living pain-free for granted. You are a reminder that not everyone has that luxury. I am so sorry you are going through this. You are incredibly strong! I am confident you will hang in there and that things will definitely get better for you. Sometimes you have to hit rock bottom before things improve (although I’m sure you have felt as though you’ve hit rock bottom before..). I don’t know you and have never commented but please know I am thinking of you and hoping you find some semblance of relief VERY soon!
Keep us updated,
I cannot say that I know how you feel but I do feel for you and am sending as much positive energy and vibes to you as i can. Feel better and know nothing lasts forever (even though it might feel that way). Cyber-hugs friend….
Oh Ali. I am so so sorry. I can only imagine how difficult this is, but please know that we are all here wishing and hoping for nothing but the best for you. If you want, I can send you daily puppy photos to brighten your day! <3
This is so unfair!!!!
I really don’t know what to say.
I’m so sorry that you’re feeling this way Ali! The people with Crohn’s who commented with advice seem to have a good amount of alternative options-hope something works!
Ali you are in my thoughts and I’m praying for you. I wish you a speedy recovery. All the best to you 🙂
I just found your blog through an HLB tweet and wouldn’t have known anything about colitis except that we just had dinner with my brother-in-law last week who is in town (Portland, OR) to see a Naturopath who is one of only two on the West Coast doing fecal bacteriotherapy. I guess it’s very new over here but they have been doing it in Australia with great results (Dr. Borody). Some big hospital in the US is working on getting a trial going (Johns Hopkins maybe?) but it was going to be a few years out and my BIL was looking for help now as the drugs he’s on are wreaking havoc on his system. Hearing about the painful hell he has been going through is my first experience with the disease and I am so sorry you are going through it as well. I hope you and your Doctors can find a solution that gives you relief! Sorry if you already know all about that, but just in case you don’t I wanted to share 🙂
Oh Ali, I don’t know if I can say anything other than you deserve a huge hug and a litter of golden retriever puppies. Hang in there girl. If you need a silver lining, perhaps whatever treatment you and your doc come up with will help much more long-term than this every-few-months flare schedule you’ve been on. I’m sending lots of positive and healing thoughts your way!
I am so, so sorry you’re going through this. I am so sad for you and so angered at the medical system for not finding a way to help you. Lots of hugs. <3
My gf has UC and went through a pretty serious flare that lasted for six months, and really isn’t 100% under control today, nearly 18 months later. She was finally able to get it under control by adding azathioprine to her remicade, asacol hd, canasa regimin and taking some massive doses of vitamin d. I’m new to your blog, having stumbled upon it while I was sick with the fu last month and needing something about running to read, so I’m not sure if what your meds are for your Crohns/colitis. Are you currently seeing a doctor that is part of an IBD specialty clinic? Moving her care to the IBD clinic at Vanderbilt was another big step in improving her disease symptoms. I think CCFA has a list on their website. I hope you get better soon. Or local Take Steps walk is I two weeks, I’ll be thinking about you as we are walking.
Ali, I’m so sorry to hear about this! You are so strong. Know that I’m thinking of you and sending bunches of healing thoughts and vibes. And big hugs, too!
Oh Ali… I just want to give you a big gentle hug and maybe a puppy. It’d be a puppy that you wouldn’t have to take outside to walk or anything because that sucks when you’re sick.
I did Remicaide for awhile until it put me into a drug induced Lupus so I was forced to start on Humira. I’ve been on it a LONG time but if I remember correctly they might have given me a double dose for the initial injection because I was having so many Crohn’s related issues at the time. One thing to note… you have to be tested for TB before you can start Humira so if that is a route you might be going maybe you can get that done since the results take a few days (at least mine did). The injecting part really isn’t that bad – you definitely get used to it and now while it’s not my favorite thing to do I don’t really mind it.
I hope you’re feeling better soon. If there is anything I can do to help, please let me know. <3
I definitely fee you on this–the worst thing about Crohn’s is how alienated it can make you feel, especially from yourself.
But re: Humira, I’ve been on it for about 8 months now, and it’s done some pretty fantastic things. I found that there’s something oddly freeing about doing the shots yourself–to do something you physically never thought you could during a time when it feels your body is limiting every aspect of your life actually gives you some semblance of autonomy, which is what I always miss mid-flare.
Best of luck–this too shall pass.
Oh my, I am behind on your posts and SO sorry to hear how rough the last month or so has been. Sending you lots of strength, sister bear hugs, and well, gummy bears, because who doesn’t like those? (and they look like a hug, don’t they?!). ((hug))
Boo Crohn’s, you whore. 🙁 I am so sorry to hear that things aren’t getting any better over there. I hope Dr. Dreamy gets something to work for you soon. This Saturday I’m “turning the race orange” with Team Challenge NE Ohio & will be pimping myself out to team Ali. Chin up & e-hugs!
So sorry you aren’t getting any better, girlfraaaan. I wish you weren’t going through all of this, I hope that you doctor can find you some relief soon. If you need bitch, feel free to send an email/text/Skype/carrier pigeon/etc. Hurry up and get better, I want that froyo/shart date 😉
Hugs from Hawaii…hope it gets better soon.
So sorry to read this. You have to be discouraged beyond belief. I thought of you today when I drove by your town on the way to Maine. Your parents must be sick with worry about you, too. Take care. Maybe you need to get a puppy!
Ali – never lose hope. You will get better. There is a light at the end if the tunnel
Ali, my heart is breaking for you! All I can say is that I’m keeping you in my thoughts!
So sorry to hear that you are still sick. As a fellow Crohnie, I know how hard it is when it’s been weeks and there’s no sign it’s letting up soon. I’ve been there and it sucks. It’s 100% okay that you’ve been emotional (who wouldn’t be?!) and it’s also okay to lean on people… trust me I’m still working on it myself. You’re in my prayers and I hope you’re able to go outside and enjoy some sun/life soon!
I was afraid of this. I was hoping I was wrong. I hope you get some relief soon.
Oh Allie, I’m so sorry to hear this. I’ve got nothing funny or witty to try to cheer you up. I hope you get relief soon!
Wow, Ali. I’m sorry that you are going through all of this. I just can’t even imagine what it must be like to be in so much pain all the time and have no control over it. If you are bored, I don’t know if you are into YouTube, but there are a lot of great channels on there! There are some really funny ones.
Some of my favorites YouTubers are:
danisnotonfire (very sarcastic British guy)
LizzieBennet (retelling of Pride & Prejudice through mini-episodes on YouTube, it’s finished now, but it is so addicting)
communitychannel (sarcastic Australian girl, who makes fun of herself a lot, but is quite funny)
JacksGap (two super cute British twins, you can watch them with the sound off 😉
You should check them out! They might just make you laugh a bit. 🙂
Aw, Ali I’m sorry. You’re not alone even though it feels like you are! I’m confused, what’s the difference between Crohn’s-colitis, and colitis? I always thought colitis originated in the rectum and worked its way up continuously, whereas crohns can show up anywhere in sections separated by healthy bowel. But what you are describing sounds like exactly what I have. Last time I saw my doctor HE asked ME “what we were calling it last?” Which makes me wonder if theres even a difference. Maybe I have Crohn’s, or Crohn’s -colitis. All I know is that I have ulcerated inflammation 40 cm up my colon. ?? Who knows. Either way it’s miserable. I’m headed in the same direction as you, because Remicade has officially failed. My doc said there’s a new drug (not a biological) coming out in the next 18 months that I could try perhaps. Not thrilled. I’m considering doing SCD really strictly sometime in the near future. Have you ever done it? Breakingtheviciouscycle.info I think is the website. Might be worth a shot!
Allie! My new best friend! (Don’t let me creep you out. Just go with it.) I was actually reading about the SCD quite a bit today and debated purchasing the book, but I’m going to go forward with the diet plan I’m on now at least for a little while. It’s basically an alkaline-based diet: emphasis on vegetables and whole foods, nothing processed, no dairy. I have to be picky about which vegetables I eat and so far not a single thing I eat agrees with me, so who knows. If you try SCD I definitely want to know how it works out!
As for the Crohn’s/Colitis/Crohn’s-Colitis diagnosis: It’s my understanding that the distinction between the diseases has to do with where exactly they’re located. I believe (don’t write this down) that colitis is contained to the colon, whereas Crohn’s, as you said, can turn up anywhere from the mouth to the anus (lovely word, “anus”). I have the disease highly-concentrated in my sigmoid and transverse colon, which is indicative of colitis, but I also have it in other parts of my body, which is Crohn’s-specific. Hence the duplicate diagnosis. If that makes sense? (For the record, sometimes my doctor calls it Crohn’s, other times colitis…it drives me insane. Hello, identity crisis!)
Crohns is the WORST!! Booo. I am so sorry. Thank you for the update. I was thinking about you and was hoping things were going well. Since they are not and there is not anything I can do, here is something to make you laugh. This always makes me laugh out loud and hard. I hope this brings you a few moments of forgetting about how your stupid immune system is faulty.
A Fellow Crohnie
Sending healing thoughts Ali. So sorry to hear all this. I don’t know you other than through your blog, but consider checking out this treatment. It’s doing amazing things, my mother is a practitioner in MI. http://www.naetnyc.com/
I hope they can find something that provides you relief soon Ali.
sending love and healing thoughts your way.
I’ve only recently been following your blog & love your open & honest posts… you seem to voice what so many other feel but cant put into words… I too fought going on Humira for a very, very long time. Finally got to the point where I begged the Dr’s to do give me anything that would work – I have been on Humira for a year and a half now & while not perfect by any means, it was a saving grace for me. I do not want to be on it forever & hope to be able to wean myself off it (with dr’s help) but it really did give me my life back. I was even able to complete my first ever full marathon last year (with my husband by my side) & will be running my 2nd half marathon of the year this weekend. I know the long list of possible side effects (some of which I had & are ongoing) & all the nasty potential stuff down the road… but in the end it did work (quickly too)… its not something to be taken lightly, but for some (like me) it definitely works. Hope that you find peace & comfort very soon!
That’s amazing, Sharon! My fingers are crossed that I can just get started on something SOON, and that when it happens it kicks in fast. I’m losing my mind here… Keep running and taking good care of yourself!
If you need some puppy love I can bring my frenchie Sadie over for some snuggles. She makes EVERYTHING better in 2.5 seconds!
I think you’re incredible, and I know you’ll get through this. Nothing I can say will make you feel better but you should definitely google panda sneeze, blind gay news anchor, and model falling bloopers to make yourself giggle. Healing thoughts and I am grateful for you just being you.
Get well, friend. Let me know if you need anything, ever – you know I’m just a hop, skip, and a jump away 🙂 <3
Thanks, neighbor. I miss you and also your roommate 🙁
Oh dear! Feel better- hope you get some answers soon! For some laughs re:Ryan Lochte show: http://www.youtube.com/watch?v=HuV1JYgyBxY
Ali – I’m so sorry to hear you are in such a sucky place right now. I was super excited to see you posting again – I have been thinking about you a lot lately. Maybe it will cheer you up to know that you will be my inspiration for my upcoming marathon this weekend. I will be re-reading your last marathon post a few times before my race. You made the time I was hoping to get on my last marathon (but I didn’t, I got 3:59, stunk it up at the end). Hang in there. You are a fighter!!
So exciting you’ll be marathoning this weekend! I’ll be thinking of you and wishing you all the best. My your legs be speedy and your finish line smile be huge! GOOD LUCK!!!
Here are animals. They are cute. Hope your guts start behaving soon.
I want to hug you so bad.. and take away your pain too obviously. I hope you are permanently skyping tyler to cheer you up! stay strong x
Love you. That’s all. Hoping you get answers and feel better soon.
Oh Ali, how much love can I send your way through a comment? I I hope you do hear all our cheers and feel all our hugs even if we send them to you through a few written words.
Stay strong Ali! 🙂
Hey my dear – I’m so sorry to read what you’re going through. Although I don’t have Crohns, I too have a chronic illness and can completely relate to what you said throughout much of this post (and past posts on the topic), especially at the end – I always believe that it won’t affect my day to day bc i’m used to my treatment and schedule things (including running/training) around them, so it’s hard to grapple with the fact that yep – you do have an illness that can be dangerous and scary. Heck, I’ve held a work teleconference while getting an IV put into my arm, so I like to assume i’ll always be okay if I just keep a sunny disposition… BUT knowing the disease has the potential to one day take over is terrifying and disheartening at the same time.
Btw, I don’t mean to overstep, but I’ve done self injections before when I was younger, and they may be no picnic, but you get used to it, like anything else (although granted my medicine was something completely different than I’m sure you’d be using since I don’t have Chrohns). 🙂
Anyways, hang in there! LAUGHTER always helps, so turn up Ryan Lochte extra loud.
obviously I’ve passed 4th grade grammar.
Fail Ali’s Body. Big fail.
Thinking of you internet friend!
Re: Reality TV shows – so does Vanilla Ice and Bronson Pinchot (do you remember – maybe your’e too young! the TV show from the 80s “Perfect Strangers?”
For what it’s worth, I’ve only been wearing the socks you sent me. They made me take them off for the colonoscopy to wear special “grippy-bottomed socks” and I almost cried. I am so attached to these amazingly-crazy socks and I love them so much.
Not happy to hear about this. You have such a spunky and positive personality, and I don’t let this get you down. Think one positive thought a day, and I know you’ll rise about this situation. You’re a fighter – you’re a marathoner, you have resilience. Let’s hope the different course of treatments will help and heal you. In the time being, if you want a good book to read, or a good movie to watch, just ask. Sending you hugs, and try to keep on smiling.
I feel your pain. I am so sorry ;( You are one strong girl and I know you are doing your best with your situation. Thought I was the only one that could only sleep on my back without having to run to the restroom or feel worse. Thanks to you…I know I am not the only one.
Thinking of you and hoping a solution comes soon, but even a solution will take some time (and of course, more time than we want it too!)
Sending you lots of cheer and I hope you feel better soon. Have you watched Veep? Amazing. Ray Charles, the blind golden retriever puppy, won a photo contest! See puppy here: http://thedailygolden.com/2013/04/01/ray-charles-the-blind-golden-retriever-puppy-wins-photo-contest/
Ali – I am so sorry to hear that you continue to get sick. I too have been there and it’s not only horrible to feel that sick but it’s also an emotional rollarcoaster! My prayers and thoughts are with you.
And in the meantime, check out this puppy cam:
I am so sorry!! This made me so sad and SO frustrated for you… I do not have any advice and sadly no magical cure to offer, however have you ever looked at Hipster Puppies?! Hopefully this will brighten your morning for a little bit. If nothing else, it is better than reality tv!
Sending lots of positive thoughts and support your way!!
Oh Ali 🙁 I’m so incredibly sorry that this is happening to you. Just know that you have people behind you 100 percent. I’ll be sending cute-puppy vibes your way!
Healing thoughts your way! So sorry to hear you’re still having to deal with this f’ing crohns! Hugs to you!
Ali, I found your blog recently through a friend’s recommendation, and I have been following your journey with interest and also sadness in how you’ve struggled. I was diagnosed with ulcerative colitis in November after being sick for weeks and felt like I was dying for a few weeks even after getting diagnosed, and so I know a little (although only a little) of how you feel right now. I am currently taking Humira, so if you have any questions about it, please feel free to email me. I will tell you that I did not feel immediate results from it and even after having taken it for 4 months, it was not working well enough, so I am now taking a brand new drug (Uceris) along with it. My GI referred me to a specialist at Vanderbilt, but I just found out my appointment is not until June 26! So I definitely get your frustration about playing the waiting game.
Hugs to you, Ali. I am rooting for you. (And praying, too!)
No words… and apparently no chocolate…. so, just….. (((hugs)))
Wishing you wellness on the way!
Oh Ali you poor thing. I’m so sorry you’re having such a tough time. It’s been so long, this time! Thinking of you
Ali, I wish there was some way I could wave a magic wand and make you feel better!! I hope you’re able to get some answers soon.
🙁 So sorry to hear about what a rough time you’re having. Hope things speed along and you can get some more answers soon. Feel better!
Oh….this is not fair and I’m so sorry you are not feeling any better. I can’t even imagine how frusterating it must be to feel so sick and like you’re missing out.
You’re down, but you’re not out….hang in there…..
oh Ali I am so sorry. This sounds so incredibly difficult. Thinking of you.
Sending hugs from Texas. Hope you feel better soon.
I’m so sorry you’re not feeling well and your disease is progressing. I hope everything works out for you on the medical front.
Doesn’t daytime TV just suck? Even with premium cable channels, there just isn’t anything on during the day. You can try watching some old TV shows on Netflix — something you never saw before, but always intended to because everyone says is great (everyone says I should watch The Wired, but the description of the show doesn’t appeal to me, but I think I may enjoy The Walking Dead or Breaking Bad and I stopped watching Dexter when Jimmy Smits was on it, but I would like to watch the John Lithgow season). Of course I may have intentions to watch the shows I’ve never seen, but then fall back on stuff I enjoyed when I was younger (Fame, ER, Lost, etc.). There’s also some movies out that look pretty good that I want to see (Life of Pi and Silver Linings Playbook). If you need some company and something to do, I can teach you to knit or crochet. We can start easy with a wash cloth that you could use to wipe your sweaty brow. 🙂
Feel better soon, Ali.
I am so sorry that you are feeling so bad. I totally understand what you are going through. I also have crohn’s in the same areas as you and had most of my colon removed. I am on Humeria right now. The injections are not that bad if you decide to go on it. I hope you find some relief soon. Sending some happy thoughts your way.
I wish I had something awesome and encouraging to say, but I’m just so sorry that you have to deal with this. And I can’t believe that it’s so hard to schedule a return visit when your symptoms are so severe!!
Have you seen the TV show Archer? It’s really ridiculous but funny and there are three seasons on Netflix and maybe that would make you laugh a little?
Reading this makes me want to cry with you. I am so sorry you are going through this. I pray for a positive outcome for you soon. I don’t know what else to say. I can feel your pain (literally), as I have just come out of my year long flare (fingers crossed that it stays this way for a while). I am hopeful for you that they find something soon to help you. You will stay in my thoughts.
Oh my gosh, a year-long flare…How did you survive??? Honestly. I’m going on four months and I just feel like I have no willpower left. Power to you, Kim. Keep taking good care of yourself!
I can’t even imagine what you’re feeling. I was sick last week with a fever and flu, and now that seems like a bug bite compared to what you’re going through. So sorry, lady! I really hope they find something to help!
So sorry to hear and hope you are able to find a solution SOON so you can get back to enjoying life!! Feel better!
I’m not sure if it would help, but my mother-in-law recently told me about “The Plan” which I’m going to try (I have IBS)… it basically helps you find what foods you can and can’t eat based on how your body reacts to it. I know you’re in a lot of pain and at this point it might not help but thought I’d throw it out there.
Ugh :(. This sounds like it really sucks, lady.
All I can say is please hang in there. Hugs.
Oh, Ali. I’m so, so sorry. Is there anything we can do? Other than send you virtual hugs and pictures of cute baby animals?
Ali, you are stronger than you know. I know you are tired, hurting, and tired of hurting. You are strong and fierce, and you will feel better, there will be a silver lining. Keep fighting.
Ugh that sucks so badly. I’m sorry things are getting so much worse for you. I hate when it takes so long to get into doctors and when they don’t have any real answers. It’s like you’re supposed to be able to fix me, please get on with it already.
Damn girl so sorry, big love to you from England. I suffer from anxiety and depression which at times can be crippling, and frustrating when there’s nothing you can do about it. Chin up, There’s brighter days ahead, just focus on resting and get some good books to read x.
Hey Ali, I am so sorry you are going through this. I hope that when you get tired of reality shows you find a great puppy cam to cheer you up!
Ali, I’m so, so sorry. I have been there. Your descriptions are where I was over the past year, up until just a few months ago. I know everyone is different, but I feel that you should seek out a second opinion. From a medical standpoint (and I did some research and found a new doc), here are my suggestions (I was facing losing my colon 3 months after having a baby): cortifoam (hydrocortisone rectal foam to calm your lower GI down – topical – you’d be surprised at how this can help dramatically with lower colitis), suppositories and/or enemas, if you can tolerate them, can also help topically. The combination of 6mp/imuran + remicade works a lot better than remi alone. I was on remi and it was failing me, even at a double-dose, even plus prednisone. I tried every kind of diet (besides SCD) – gluten, dairy, no-fiber, hypoallergenic, grain free. The best diet advice I have for you is to avoid fiber and gas-causing foods (the gas can make your colon more inflamed-stretched out). Sorry if I’m over-stepping, I just truly know how bad it can be and I want you to know that I’m thinking of you every day. Take care.
Thank you for the advice, Julie. I hope you’re feeling well these days! I used to be on 6MP and I won’t go back on it. I don’t like that drug, I don’t like the side effects and I definitely don’t like the risks. So that’s one that we’ve ruled out (I was on it with Remicade at the time, which many doctors seem to recommend). As for the Cortifoam: I actually have some but I’ve been terrified to use it. Or rather…grossed out by it. I know that’s lame, but it just freaks me out a little so I haven’t used it. I know I probably just need to suck it up and try it though, if it’ll help.
Don’t be afraid of the foam! Its not nearly as bad as you might think. Of course it didn’t do anything for me except make me bleed more. Sexy. I use Canasa (my boyfriend calls them torpedoes haha) but I have no idea if they actually do anything except make a waxy mess. Lovely right?
Take care Ali! praying for you… I hope you get better soon.
I am just so sorry! Sending hugs to you and lifting you up in prayer today.
I’m so sorry to hear that you’re still feeling sick. Thinking about you and hoping for the best xoxo
So sorry to read this. Try to stay positive (easier said than done, I know). Praying for a speedy and long lasting resolution. xo
I am so sorry to hear that you are still feeling badly…especially after your 10-day reset juice fast. I’ve seen the commercials for Humira and thought about you (weird, since I don’t even really know you :P), but always figured it wasn’t an option for you. Hopefully you and your doctor can figure something out soon to help get you back on the path of wellness! I’m sending you goodness all the way from Atlanta!
My heart is braking for you. I just wish there was something I, we could do. I know there is nothing to be said that will change what you’re going through but just know how supported you are by your friends.
Oh, Ali, my heart goes out to you! I’m sending positive thoughts your way. This really is a crappy time. Maybe watch Mary Poppins? It’s one of my favorites!
Interestingly, Mary Poppins always scared me as a kid. I didn’t understand how it went from real people to cartoon. Though I guess you could say the same thing about Space Jam which does NOT terrify me, but rather excites me…
I am so sad to hear you are still sick.. I can’t believe it’s been this bad for this long and there is nothing that can give you immediate relief. If you go with Humira, how long would that take to feel any positive results? And what would the clinical trial entail? I’m ALWAYS here if you want to talk.
According to what I’ve read online (which, I swear, is EVERYTHING), Humira can take anywhere from a few days to three months to start to kick in. The results seem really, really varied with people. And I don’t know anything about the clinical trial yet. The doctor said if it’s something I’m willing to consider, he will set up a meeting or phone call with the people running the trial to give me information (he personally didn’t know much about it). So hopefully this can all happen ASAP!
My mom has been taking Humira for her Rheumatoid Arthritis for several years now. I know RA is not the same as what you’re dealing with, but hopefully if you go that route it will help! She said she got used to the self injections pretty quickly, and they weren’t as scary as she thought they would be, if that helps. Hang in there! Like someone said above, all your readers are thinking about you!
Ali, I’m so so sorry you’re not feeling any better. I sympathize with you and sadly can say I know how you feel…although I know that doesn’t make it any better (and in fact might be annoying-if so I’m sorry). Stay strong and keep trying to find something positive in each day (you are so very good at that). This disease sucks!!!! and hopefully things will start to look up for you….until then sending you lots of happy vibes with mini eggs and puppies.
Oh, this sounds terrible. Please know that your readers are out here thinking of you and sending positive thoughts and wishing we could get you all the puppies in the world to make you feel better and get back to work.
And it is totally justified not to want to talk about Boston, the marathon, bombings, and manhunts when your own body is rebelling against you.