You know how when you learn a new word, suddenly it pops up everywhere? It’s in the book you’re reading, it comes up in daily conversation with your bodega guy and it’s the answer to a “Jeopardy!” question. You’re newly hyper-aware of this discovery — this exciting word! — and now you can’t escape it.
It’s kind of like how, as soon as you cancel your trip to Hawaii, suddenly everyone you know is there, just got back from being there or is planning to go there next month. Every single person, really, from the “Today” show anchors to the cast of “Beverly Hills 90210” to every engaged, honeymoon-planning couple you’re “friends” with on Facebook.
And it’s like how, when you can’t run, that’s all everyone else is doing. Since when did that chick you went to high school with start throwing down 42-minute 10Ks, and why is every contestant on “Wheel of Fortune” in the middle of half-marathon training? Plus, when did everyone move to PR City and stop being mediocre? What the hell?
So yeah, I didn’t go to Hawaii.
Honestly, it was an easy decision to make. All you “just get on the plane, Ali,” people are nuts. Sorry. I appreciate your positivity, but it was so unrealistic. Feel the pain I’ve been feeling for eight seconds and you’ll know that “just getting on the plane” isn’t quite as simple as it seems. There was no way I was going to be OK on that long-ass flight, and there was certainly no way I was going to be a happy traveler once I finally got to the hotel. And then, even if I survived the vacation, I’d have to do the flight again on the way back. No, thank you.
I knew I couldn’t spend the week at work, though. I was too sick and too sad. On Monday morning, I called my boss to talk with her about my options (which, turns out, are limited — medical leave isn’t really an option, so instead I have used up all my sick, personal and vacation days for this nonsense) and she was very sympathetic and understanding. The one thing she asked that really stuck with me was, “Alison, who’s taking care of you?”
And then I had to pull the mute-button-move so I could start weeping a little bit. Because the reality is, no one was taking care of me and I clearly couldn’t take care of myself anymore.
So instead of going to Hawaii, I saw a new doctor in the city — hated him — and then I did manage to get on a plane.
Not the plane I planned for. But kind of a better plane.
For the past week, I have been in New Hampshire, staying with my parents and letting them cater to my every whiny need. I am finally letting someone take care of me.
I swear it was their idea, and as low-maintenance as I try to be, I do find myself asking my mom to “please refill my water cup” at least 22 times a day, and she has not yet complained or delivered without a cute smile.
I got a visit from this guy, too.
I’d love to say having Tyler here perked me all up, but I slept for a lot of the time he was here, and the kid is so dang active now that I can’t run around after him. It was frustrating not being able to chase him and play with him like I would have wanted, but his presence makes me happy, so I can’t complain about that.
I did my third Humira shot on Friday, which was exciting because each time I do it I stupidly convince myself it’s going to work. That’s a cute trait, right? Delusion mixed with optimism masked by a general tone of “whatever, this is bullshit.”
Being in New Hampshire has been amazing, though. I am disappointed that I’m not cured simply by being here. All I’ve done is sleep, watch TV and let my mom feed me way more than I want to eat, and the change of scenery (and couches) has done wonders for my mental state. That apartment in NYC had started feeling like a prison and I felt trapped there. Here, I have more room to roam (which I don’t do, because I’m too lazy and tired all the time) and I have my choice of bathrooms, which is very cool.
Another fun thing I’ve done is ditched gluten. I saw this new doctor last Monday, before I left, and he was a douchebag and he was rude and he was nasty and condescending, but the one thing he said (after I tried inquiring about food allergies and whether I should consider cutting dairy out of my diet) was that I’d “definitely feel better if I cut wheat out of my diet.” The pasta-lover and diet-hater in me says “no, doc,” but the girl who has been violently ill for four months says, “fine. I hate food anyway.”
My mom has whipped up tons of gluten-free dishes for me and it’s been lovely.
Except for this one thing, which may or may not be related to the lack of wheat in my body…
For the past few days, I’ve found myself feeling the opposite effects of the normal Crohn’s symptoms. Instead of running for the bathroom and…doing stuff…I’m, well, not.
I get the pain and the cramping and the bloating and then, no matter how much pushing I try (which isn’t much because owwwwww), nothing is happening.
I know what you’re thinking: “But Ali, isn’t that a good thing?! Isn’t it good not to be going to the bathroom every two seconds?!”
No, not at all. I get the pain and the misery without any of the relief.
So there’s that.
Meanwhile, the fevers and night sweats come and go. I had a few fevers when I first got here, and I went through a decent rotation of pajamas and towels for coating the bed. I have oxycodone to help with the pain, but it keeps me up at night and makes me all jittery, so I don’t want to get too hooked on that. I also have sleep medication, but that doesn’t overrule the stomach pain, which wakes me up no matter how tired I am.
One thing that has been difficult about being home is the stairs. I didn’t realize just how out of shape I had become until Monday, after my doctor’s appointment, when I was walking home while on the phone with my dad. I had to walk up that stupid hill between 2nd and 3rd Avenues — the same hill I used to run up every single morning without thought — and had to stop halfway up the hill. I was so out of breath that I just couldn’t keep going. So I leaned against a tree, told my dad to “hang on a sec” and cried. Crying, by the way, doesn’t help you catch your breath.
I couldn’t believe how difficult it was just to walk up a little hill. And now that I’m home, I’ve found the same demon in the stairs. The first few days, it was so much work just to get up and down them. Going up, I would get out of breath. And coming down, my knees and ankles ached. I also seem to have developed some arthritis-y symptoms in my wrists, but that’s been a good excuse to stay off the computer and ignore everyone. (You had a birthday? You ran a PR? Sorry I missed those things. Congratulations on being born and going fast. You rock.)
I don’t know when I’m going back to the city. I don’t ever want to go back to that apartment because being there just reminds me that I’m still sick.
I do have a job I need to tend to, of course, though I’m lucky that I can work from home for a bit if needed.
I’m lining up appointments with new doctors in hopes I can find someone who will tell me something encouraging.
I haven’t been outside in a week. I haven’t breathed fresh air or gone for a walk, and every now and then my mom will make me “do a lap” around the first floor of the house in an attempt to “get some exercise.”
But basically, regardless of where I’m located, I’m still sick. I haven’t made improvements.
And I didn’t go to Hawaii.
Oh well. Those islands aren’t going anywhere, right?
68 Responses
I’m sorry you’re suffering so much, and that you haven’t found a doctor that gives you the respect and attention you deserve. I suggest you look for one who practices integrative, or functional medicine. They use a more holistic approach to healing.
The fact that your symptoms have changed since you eliminated wheat is a good sign. Your gut needs to heal, but it takes time. Figuring out which foods might be contributing to your symptoms could provide you with the relief you’re looking for. You’re right to ask about dairy – it has similar properties to gluten grains.
Eliminating wheat is a lot easier than eliminating gluten, as gluten is hidden in so many processed foods, personal care products, and even postage stamps! It’s a good idea to have yourself tested for celiac and gluten sensitivity before you give up gluten completely.
But know this – while eliminating wheat and gluten may be the first step in healing your gut, there may be other foods you need to eliminate as well, at least temporarily. And transitioning away from processed foods gradually is a good idea for anyone these days, as there are many food additives that your digestive system may not be able to filter out and dispose of so easily.
That’s wonderful that your mom is such a support system for you! I had to rethink everything I thought to be true about eating healthfully when my daughter was diagnosed with Crohns 5 years ago. Now, she looks and feels better than ever before – without drugs!
Many gastroenterologists don’t believe that food has anything to do with digestive illnesses. It defies logic, and my daughter and I have proven it’s just not true.
So, good luck to you in crowding out the foods that made you feel bad, and trying to figure out which ones will make you feel better. I know you can do it! If you need any support, please feel free to email me anytime.
Just remember – no transformation ever comes without a struggle. Gradual changes in diet and lifestyle can make a huge difference in your life. Good luck!
Just checking in to see how you are doing. My son who has Crohn’s and I wait for your blog updates and hope things are getting better.
Sending good thoughts.
What is there to say except I hope you are feeling better soon and that you do don’t deserve this pain. Sending healing vibes (for whatever they’re worth).
Best to you!
Blah. I feel dumb that I commented on your previous post about going to Hawaii only to find out reading this post that you didn’t go. Silly me. Sorry about that.
Anyway, I don’t have anything close to what you’re going through right now, but I did try going gluten-free for a month or so to try to alleviate some of my intestinal/digestive issues. It never made me feel better. I had heard from so many people that it made such a huge difference in how they felt physically, mentally, etc. almost immediately, and I never saw any change, except for weight loss.
I hope it helps you more than it did for me, but if it doesn’t, you can at least know you’re not alone in that (because it really seems like everyone is doing gluten free these days and everyone says it’s amazing).
I have a friend who is suffering with diet issues and your post has given me an insight into how tough it must be for her – I had no idea. I hope you both find some relief very soon.
Eliminating gluten from your diet, while it certainly won’t cure you, will have many benefits. So many people have gluten allergies these days.
The best advice my naturopath gave me was the use of Vitamin C powder (tastes like unsweetened lemonade).
It’s good for so many things, constipation being one of them. Don’t know why it’s not better known for that.
I started with 1 grams in glass of water – doesn’t taste wonderful, but okay.
As you increase 1 gram per day, you will reach your personal tolerance level. Anything over that will give you diarrhea. Once you know what your level is, stay just at or under it.
Hope that helps with one thing.
Just finding your blog now, but after reading it felt very happy you’re mom is looking after you. Sometimes (even if it doesn’t ‘fix’ us), we need to relax in our mothers care for awhile.
Sending you healing energy, and hoping your new doctor will get things straightened out.
You continue to be in my thoughts, Ali. I really hope you start feeling better soon!
ALI! I hope you got my email, but OH MY GOSH how I can relate all too well. I have Crohn’s too…and it’s flaring right now, which absolutely sucks.
I actually thought it was pretty hilarious that you said this : “I have my choice of bathrooms, which is very cool.” only because I feel the same. Aren’t a ton of bathrooms the best?!?!? Especially with people who KNOW what you are dealing with & don’t think you are gross when you have to literally SPRINT to the bathroom like 20x a day?!
I hope your time in New Hampshire is doing good things- I LOVE it up there. I have family there too, and it is just so beautiful.
YAY for your Mom being there for you- Moms are the best 🙂
And I’m considering during the gluten free thing too, a friend of mine with Crohn’s suggested it as well. I always heard that it didn’t really matter, but the more & more I read it really DOES work wonders.
Thinking of you!!
I hope you’ll get well soon, and there is always time for Hawaii just as you said. They aren’t going anywhere. Unless the volcanos change and eat them up 🙂
Don’t worry, that won’t happen 🙂
Stay well, and positive. You are an inspiration to all of us. And “Go super-moms!”
I love your blog and hope you feel better soon!
http://runnerintherealworld.blogspot.com/
Hey Ali, I haven’t been reading any blogs lately because I was swamped trying to finish grad school. So when I logged on to catch up with what’s been going on in your life today, it broke my heart. I don’t have any advice and I can’t imagine going through everything that you are. But I can offer my puppy for a play date if you’re ever in San Francisco (well, after July 1 because we haven’t moved there yet)! She’s great at cuddling. I’m sending you my best wishes that something starts to work soon.
i’m so sorry. and i’m sending good, non-crohnsy thoughts your way. as a mom, i know that i would LOVE for my baby to come home for any reason at any point in his existence, so don’t try to lie low. moms love taking care of their babies, no matter how old they are. you’re lucky you have a great one to take care of you.
I’ve been reading you blog for sometime but never commented, so today’s the day to make my first comment!
Girl, I am so sorry for everything you are going through. I cannot even imagine what it is like to be in constant physical pain and unable to leave the house, especially when you are usually such a bad-ass athlete.
I lost my Dad very suddenly last year, and one of the things that annoyed me most was when other people would be all “I can totally relate” or “I feel your pain” or “It will get better”. Sorry peeps, but you can’t relate or feel my pain and you don’t know that it will get better, unless your Dad just suddenly died too. So, that little aside was just to make that point that while I cannot relate and I have no idea how freaking painful your pain must be and I have no idea when everything will get better, I just want to say that you rock. So whatever happens keep on rockin’ and being awesome! You have been so honest through this whole journey and while I don’t have Crohn’s it’s been a great reminder that you need to be honest with yourself and with others, whether you feel fantastic or you feel like garbage. I’ll be keeping all my fingers and toes crossed hoping that you get better soon!
::HUGS::
long time reader, rarely commenter, but I hope all works out!
I started Humira back in February. It wasn’t till my 4th 5th shot that I noticed improvements. And I wasn’t near as sick as you, so it might take a bit longer for the Humira to kick your immune system in the butt. I’m about to do my 11th shot and I am finally starting to feel well. Give it time – it will work.
Obviously, there isn’t a lot to be glad about, but I’m still so glad you have your mom to take care of you and be with you.
Hurray for Angel Moms! I have one, too. I am sending healing thoughts your way. FEEEEEEL BEEEETTTTTEERRR (try reading it in a more whimsical and less Halloween spooky music recording sort of way. See? Healing.)
I don’t know you at all but i’m sitting at my computer and crying whilst reading your blog post. You don’t deserve this. My heart goes out to you and I hope you feel better soon. Today would be good.
Glad you’re getting some much needed care from the mom. Sometimes that’s just what a girl needs 🙂
Hi Ali, I’ve been following you for a few months. i have crohn’s also and have been dealing with it for almost 20 years. I have had surgeries, and taken many different drugs and done different things with diet. I just wanted to say people like you are why I started to run. I just started a year ago, and have ran a 1/2 this year and running a marathon in a month. But, I took up running because I can. A few years ago, I could hardly walk, much less run because of all the pain. Then remission came. I started looking into people running that have this disease. You inspire me. Even though you cannot run now, I truly believe you will again. Even though I’m sure it doesn’t feel like it now, You will get better and be able to run and wanted to just let you know you are an inspiration. Hang in there – I’m keeping you in my prayers.
I can’t offer you advice or a puppy, but I do hope you feel better soon. I’m so glad to hear that you’re at your parents’ house and get to see Tyler. I was thinking of you the other day (hope that’s not creepy…) and hoping, hoping, hoping that you would be feeling better. I’ll keep sending you a lot of positive vibes.
Ali,
I am so sorry to hear that your flare up is still in full swing. I know you’re probably sick of people giving you advice, but if you’re looking for a new doctor Dr. Brian Bosworth was a miracle worker for me. I’m not completely without symptoms, but he is so kind, understanding, and sympathetic (no condescending, snarky attitude like other doctors I’ve dealt with). His practice has an in-office nutritionalist too who is also great. She helped come up with suggestions for alternatives to my favorite foods rather than just listing what I can’t have (which never goes over well with me).
I hope you feel relief soon!
Well what do you know — I’m seeing him Monday!
I thought I recognized the scaffolding in your post! Fingers crossed he’s able to help and you feel more comfortable soon.
Man this still blows. I keep hoping for a different post from you and am sorry to hear you’re not there yet. I’m glad you’ve got someone taking care of you now. I don’t know what else to say except I’m sorry you’re going through this, it sucks and I hope you get some relief soon.
Ali,
As a mom, I’m so, so glad you are home. I have worked with a patient with crohn’s who had a lifechanging experience with the comprehensive care at the mayo clinic (http://www.mayoclinic.org/crohns/).
The good news is that Tyler cold not be any cuter.
I am so glad that you are at home. Time to let your parents take care of you. I hope they can help you get some answers and some relief!
sometimes the best medicine is to just go home and let mom take care of everything. i’m glad you are letting someone else take care of you and i wish you the best on your road to recovery!
and, yes! the islands will be there for a long time to come! 🙂
Hey there Ali! I know you get a lot of comments with people who say they know what you are going through, and I am only part of that vast majority because Crohn’s is an utter, relentless bitch. I experienced high fevers for two years straight and still experience night sweats, they never fail to haunt my sweet dreams! I’ve tried it all including Remicade, Humira, and Cimzia. The first two I experienced allergic reactions but Cimzia was successful for me for about 2 years, I’m not sure if you have tried it. I am currently waiting to pull the trigger on Tysabri now, which is potent and scary but I hear it is a life changer, and that is all I can hope it will do for me. I used to live in New Jersey but I relocated to Texas over 4 years ago, and a lot of the docs I have seen here say it seems to be in more people from the East Coast, go figure. Well I can go on for hours talking about my experience, as I’m sure every Crohnie can. I really do feel your pain and hope Humira gives you some sense of relief. If you ever feel up to it, feel free to check out my blog. I wish you all the best and will continue to read your blog because it is blunt, honest, and enjoyable!
Go Go Go Ali!
Stupid wheat.
Na, stupid Crohn’s.
I’d suggest the SCD as well. Basically Paleo eating, but it’s worked wonders for tons of people. We did it for a whole year (until scarring made the fiber impossible) and it seriously helped the husband. It is ROUGH, especially at first, but if you get to the point where you’ve got nothing to lose, it usually helps.
PS Hawaii is overrated….
So glad you’re able to spend time at your parents’ house right now – nothing better than the comforts of home! Get plenty of R&R and, you’re right, those islands aren’t going anywhere anytime soon!!
This might sound crazy but haveyouheard of the specific carbohydrate diet? I have UC and medications have not helped me. So I read the book Breaking The Vicious Cycle and have started this diet and it seems to be helping after just 4 days!! It’s a super restricted diet tho. I’m also a food lover so it’s so hard. I hope you feel better soon. Being gluten free made a world of difference for me as well.
You will come through this, its never darker than when you are in the middle of it. Nowhere better to be than at home with your family. Well done on finding the energy and motivation to blog.
Hi Ali, I’ve been reading your blog for ages and it breaks my hear a little to read just how unwell you are. I have no good advice to give. Just sending you get well soon thoughts and lots and lots of encouragement. Stay strong.
I’m so glad someone is taking care of you but my heart still breaks when I read your posts and hear just how sick you still are. I hope you find a doctor that can offer some new insight…or something positive to try.
Oh honey, I am so so sorry that you are still going through this. (((hugs)))
If I might add my two cents to this (because clearly you need MORE advice)….cut out all grains. I cut out gluten due to an autoimmune disorder, but since then have noticed that other grains (rice, mock flour blends etc) definitely leave me constipated. I think cutting out gluten will help you immensely…just give your gut some time to heal. Sending recovering thoughts and vibes!!
I am very sorry to hear you are going through a terrible bout of crohn’s. My fiancee has had it for 5 and a bit years, and then got diagnosed with type 1 diabetes 2.5 years ago. Both of you are at the beginning of the humira miracle drug (this better friggin work) train! He was in the hospital for a week (semi blockage and a whole mangled mess of fistulas, eek… trying to avoid surgery at this point!) and was taken off enterocort and imuran, and now on lots and lots of prednisone. 2 days in and sugars are a bit whacked out! He is burning through the insulin in his pod like crazy. Last emerg visit his gi doc was supposed to see im the next day, that is why they let him out. He is a cranky sort, and not in a rush to get to anything. So he just had a bit of enterocort prescribed and we will see you in 2 months was what we were told. Even though his 1st CT at this time showed lots of fistulas and was ‘concerning’. The gi on his case in the hospital was floored he was not hospitalized at that point, let alone not seen for 2 or 3 weeks post episode. Ps we are transferring to this gi doc, as the old crankarsey one also missed a high sugar of 18 a year before he was diagnosed with type 1, which looking back on, makes total sense. All the symptoms were there but I thought it was the crohn’s, as did he. All the bloodwork checks and not one during the next year was there a glucose. Dang, I should have just clicked that stuoid box had I known. Anyhow, 12 months after that unknown high sugar, he had one of 31. Thats when our endocrinologist saw in the records this missed sugar. Frustrating! Ps, always get your medical lab reports and scans. As a nurse myself it took a while to forgive myself of not getting the reports, or not recognizing the diabetes. Well anyway, back to our topic at hand.
He had the choice of remicaid or humira, and based on research and a few gi docs’ opinions, we went with the humira. Just got loading doses in hospital, in between the morphine and solumedrol he was temporarily on, and now in 12 days he is due for the second round of 2 shots. I am praying, crossing fingers and toes, that this proves to be the wonder drug many people have said it is. A neighbour from his hometown who has had many surgeries from this has been on humira for a few months I think, and it has changed him already. One of my best friends has RA and it is her lifeline after years of everything else. There are good results for the majority they say…. I am throwing out good vibes that it will be the answer for relief from this disease for both my man and you.. And everyone else suffering. We will see just around the week after our wedding this summer, which yes the timing is scaring me a little but I have faith it will be ok. He will be totally tapered off prednisone by then (back to controlled blood glucose!). 40 mg is a hella a lot for a diabetic I think.. I wish the endocrinologist and the gi doc could have a little pow wow and make sure this is a reasonable dose, just a thought.
Apologies for the long winded “comment/story”, but I figured that you wouldn’t mind. Hope you find some relief soon. All the best, Jaclyn.
Sorry to hear you’re still not feeling well!!
You mentioned a new problem of constipation…how long have you been taking oxycodone?? I’m a pharmacy student (recently learned about opioids) and someone should have mentioned that a very common side effect of opioids is constipation! An online drug handbook says, “patients with UC or other inflammatory bowel disease may be more sensitive to constipation caused by opiate agonists.” Stool softeners/mild stimulants are usually prescribed to help you “go” and really if it’s been more than a few days since you’ve gone you should tell your doctor/pharmacist. Hope that helps!!
You’ve probably gotten all sorts of “try this!” suggestions, so I’m sorry if this is just another annoying one. I’m a studying scientist and read about a treatment which uses Trichuris suis to combat the proinflammatory local immune response of Crohn’s. Here’s a link: http://www.ncbi.nlm.nih.gov/pubmed/15591509 Might be worth reading/asking the doc about. There’s nothing like a mom’s care! They do it best.
Going home, staying with fam will do you good. Let mom/dad take care of you for a while and enjoy Tyler’s company.
Ali,
I’m so glad you got to go home. I know, know, know that when I feel my worst, a hug from my mom can make things better. Thinking of you.
Ali,
I check everyday to see if you’ve posted or updated your twitter hoping you have so I know that you’re ok…or as ok as you can be right now considering everything going on. I don’t have any tips or helpful hints to suggest as I know how frustrating that can be. As a fellow sufferer I sympathize with you and admire your strength…this stupid disease is not easy. Sending you positive vibes, cute puppies, and lots of love from Canada.
Ali,
I really, really hope that the time at home helps your heart heal, if not your digestive system. The fact that you have a ton of readers rooting for you won’t help the Humira kick in, but just know that the support is out there. And…if it helps…I haven’t been running PRs, or running at all, in months, and it’s not because I don’t want to.
Hugs.
I am so flipping glad someone is looking after you! I did wonder. And there is nothing as nice as being at home when you’re sick, esp if you can snuggle down in bed with your Mum. That never gets old, somehow!
Hawaii will always be there. Hang in there. x
I have crohn’s too, and I when I got to this stage I had to get a colonoscopy on my birthday at which point they told me I would need surgery, which I then had to wait a few months to get while on a liquid diet. It was sad and frustrating but it’s a year after my surgery and I generally feel awesome and am not on any drugs. I had an ileostomy for 6 months before a second surgery and it was fantastic! Have you looked into surgery at all?
Oh, Ali – glad to hear your parents can take care of you but so sorry this is still ongoing.
Perhaps Ray Charles the Blind Puppy’s international big break will bring a smile to your face?
http://www.dailymail.co.uk/news/article-2331800/Youd-blind-love-cute-Golden-Retriever.html
Hope you are feeling even a smidge better – glad you went to your parents.
oh ali i’m so sorry you aren’t feeling better yet, but I am am glad that you were able to go home and be cared for. I am convinced that there is nothing like having your mom take care of you, no matter how old you get. and if you need anything once you’re back in ny- let me know!
First if all, I agree with the above statement about being home with mom. There really is no better place. Good move going home.
Second of all, if you’re going to be in New Hampshire for a while, maybe consider seeing Dr. Corey Siegel at Dartmouth. He’s incredible and you have nothing I lose. And he really likes patients named Ali.
Third, I go through those symptoms everyday. Pain and nauseating, chilling, tear-producing cramps/spasms without relief. You’re the first person with IBD that I’ve ever heard report those symptoms and everyone has always told me that constipation isn’t typical of colitis. Psyillium husk caps work wonders for me because they actually add some integrity… I don’t know if that makes anysense but I’m trying to avoid saying the word “poop” or “stool”. (So much for that)
Fourth, I think you’re smart to try going gluten free!! It’s harsh on the body and who knows, maybe having no gluten or wheat will calm your immune system a little bit.
And one more! My acupuncturist said figs are known to be medicinal in Chinese medicine for Crohn’s and colitis and she’s having me eat 3-4 per day. Just thought I’d pass it along.
Thinking of you all the time!! Hang in there.
Hey Allie (and Ali!) I’ve commented on your blog before about having the same symptoms as you with my IBS/IBD. I think in Ali’s case her constipation is coming from the pain killers as someone mentioned above, they are known to cause that. But the constipation symptoms are just awful because like she said… there is just no relief from the tear-inducing cramps. My heart goes out to you Ali, I keep checking your blog and praying that you write about a LITTLE improvement, and its heart breaking for us all when we see you not getting better.
sometimes there’s no place to go but home to mom.
I have been thinking of you a lot. I am sure your parents are relieved to have you in NH and doing anything they can to help you. Hang in there. I bet you did love all that rain. Why should there be nice weather when you can’t be out there enjoying it?
Oh, Ali. My heart hurts for you. I hope things begin to perk up soon. As much as I am a diet-hater as well, as soon as I ditched wheat I felt three thousand times better. Now it just feels normal to me, not a diet, just the way things are and I don’t feel crappy anymore. I second the recommendation for autoimmune info on thepaleomom.com– she’s really fantastic and I think is putting out a big autoimmune book soon, might be helpful.
Hi Ali, Sorry to hear about this. Happy to know your family is taking good care of you. Sending you lots of hugs and remember this is not forever. You will get better soon. It will happen. xo.
Oh friend. This kills me. I hate seeing people I like in pain.
When I was in the midst of a bad flare-up (not nearly as terrible as yours is and I feel like an ass even comparing it), I had my man (so when Brian gets back) put his giant man-hand (not a euphemism, actually his hand – but he’s 6 feet, so it’s a big hand) on my belly and it helped me sleep. I know this is just a small stupid thing that probably won’t work, but it was weirdly comforting. I am glad you’re in NH with your family. xo
I was thinking about you the other day, wondering if/how you’ve been progressing (hope that isn’t weird, but I suppose it is a little bit). So sorry to hear that things aren’t improving, but I am happy to hear that you have such wonderful parents. In such a shit time, it is always nice to know you have that support system. Sending you lots of well wishes for some improvement.
I’m here to send you love, hugs and prayers that something will finally click in your body and it will decide to be healthy. I am so sorry, you are such a wonderful girl!
Boy do I relate to this. On a somewhat different health-issue spectrum, but I SO relate. Um, my “walks” are slow and pathetic. I feel like crap. I can only imagine that what you face daily is 10,000 times worse, so feel free to ignore my pettiness. Just that crap feels like crap and I relate.
HUGS.
Here is something to try that has helped me:
Smoothie:
small amount of fruit (low sugar)
spinach (magnesium helps relax muscles)
a few tablespoons of almond butter (penut is pretty toxic for people with compromised guts)
500 mg quercetin (atioxidant found at a natural foods store)
1 tspn of l-glutamine powder (also at grocery store)
1 tspn of slippery elm powder
1-2 tbspns of hemp seeds
8 drops of stevia
4 squirts of flax seed oil
non dairy milk or cucumber juice
quercetin and glutamine are really helpful antioxidants. when i use glutamine everyday things calm down quite a bit. slippery elm helps sooth the gut lining, and flax oil helps reduce inflammation. i make my own almond milk by blending almonds and then squeezing out the milk with a mesh bag. i do this because my doc told me that carrageenan (in almost all non dairy milks) can aggravate ibd. and dairy produces the nightmare symptoms that you have. i had that (on vacation coincidently-it was hell) for a couple of weeks of wheat and dairy indulgence and the cramps, pain, fever, and frequent trips to the bathroom decreased by at least 50% after cutting those two out of my diet.
i also hate the idea of dieting, but i have found it is the difference between 5 and 15 trips to the bathroom each day, and whether or not i am in excruciating pain. i recommend also finding a doctor who will actually help you heal your gut, not just medicate it. diet is crucial in this. it may be the difference between whether or not you end up with a colon at some point in your life.
i feel your pain, it is so frustrating to not be able to live normally and to be in pain all the time. it is even more frightening when it threatens our ability to work and make money to pay for our treatment. keep taking trips to your folk’s house, keep looking for answers anywhere you can, experiment with your diet and keep paying attention to your body’s responses. best of luck and healing wishes to you.
Carrageenan is in alot of things besides non dairy foods, its in almost all frozen yogurts have not found one without it. Boxed cake mix and even toothpaste. I found silk almond milk and trader joes does not have it. I started out just switching regular milk for almond milk and I know prefer it to cow milk. I also only get low lactose cheese real chedder and Swiss are and I only have other dairy once in awhile it has made a huge difference in my crohn’s. you can also try lactaid pills they don’t totally work but they do make me have less symptoms. I will say the doctors in Boston are very good and maybe they could recommend a doctor in NYC. My doctor in Boston has helped me so much I’ve been on all the meds and got drug induced lupus while on Remi and humira. Also have you used the ccfa website to look for doctors they recommend in your area.
Oh, Ali. I’m so sorry you still are not better. My thoughts are with you. I hope you get better soon.
Oh ali. I wish I could do something to help. I’ll just send prayers and hugs and hope you get more fun pictures of Tyler.
Ali! I pop in and check on you (your blog) almost every day to see how you’re doing. I am sending all of my good vibes your way and just hoping, hoping, hoping you feel better soon.
I have GI issues too (I don’t really talk about them on my blog much) but just FYI… I get the pain, cramping and bloating without the relief when I eat/drink dairy. It’s pure torture.
If I could box up a puppy and send it your way, I would 🙂
Good luck lady!
ok i know you are sick of people telling you what you should do….but coming from a person with crohn´s who has tried ALL OF THE DRUGS, and been in many hospitals, please DON´T EAT WHEAT ANYMORE. it is probably helping you more than you know and also try LDN (google it, really you have nothing to lose at this point). also about the NOT going all the time, that always happens when i take serious painkillers (oxi, vicodin,dilauded)….dont know why but it has happened. anyway if you want to check out some more food ideas with great recipes try thepaleomom.com. she has a really interesting perspective on autoimmune diseases that has been helping me a lot. no miracle cure, but at least im back to taking walks and working without running to the bathroom every five minutes. haha the other day i decided to go running and literally had a bad kind of bathroom emergency without any bathrooms around. so maybe walk first. good luck and i really hope that something works soon!!!!!!
Narcotics really slow down your GI motility, so they always cause bad constipation. For sure the oxycodone could be contributing to that for you Ali, although it is strange that it happened at the exact time you cut out gluten.
I am glad your parents are taking care of you, and your work is being understanding. Have you thought about FMLA yet?
Hi Ali, I’m so sorry you’re still going through this, but glad that you have your parents and Tyler nearby now.