Tag Archives: Conditions and Diseases

Comments to a Crohnie

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When you have a chronic disease, like Crohn’s, you hear some pretty crazy things. Here are some that have actually been said to me. For real.

I just had the flu so I totally understand what you deal with! (Yea, it’s just like that only different)

My friends mom has that and she’s fine. (Good for her)

You don’t look sick. (Thanks?)

So, what can you eat? (Do you mean today?)

What exactly is crohn’s? (Asked at the dinner table)

Are you really going to eat that? (Was going to)

(After a long bathroom trip) What were you doing in there so long? (Just sitting on my ass)

Are you just in the bathroom playing on your iPad? (Yes, the toilet is just so comfortable and I especially love it when my leg falls asleep, fun)

This is important to me, please don’t bail. (Well in that case, I’ll make my guts do what I want)

You’re not a very good friend, I mean, you are sick all the time. (Thanks, I wasn’t feeling crappy enough as it was)

Can’t you just have surgery? (Maybe getting inches of gut cut out doesn’t sound bad to you)

I get an upset stomach when I eat spicy foods, do you think I have crohn’s? (You should probably get a scope, they are fun, ugh)

My doc said I have crohn’s and I feel great, I don’t understand why you don’t? (I should see your doctor, he must have a magic wand)

OMG, I’ve heard of that! You could die from that! (Whoa, hope not!)

So, why isn’t there a cure yet? (When was the last time you raised money for IBD?)

Can’t you wait until we get home? Just hold it. (Do you really want me to poop my pants? In your car? Really?)

No big deal, everyone poops, right? (Yep, I just do it a dozen times a day)

I just take Motrin for my PMS cramps, have you tried that? Maybe that would help. (Good idea, it’s not like I haven’t tried every med out there already)

You take steroids? OMG, you’ll get all buff! (Nope, just get the ‘roid rage, grrrrrr)

Why don’t you just get some sleep? (Why didn’t I think of trying that?)

You have to go to the bathroom again? (While pausing the movie, again)

You can go, there are bathrooms there. (And all bathrooms are equal)

How can you be a good parent when you are so sick? (Hey, my kid loved having stories read to him in the bathroom)

Can’t you just take medicine? (More than the handfuls I already take?)

You know, you can’t expect special treatment. (Gee, really?)

You were in the hospital again? What for? (Just taking a little break, thought I’d have a little spa week. They wait on you hand and foot, especially after you ring for them eight times. The food is indescribable and I love sharing a room with a stranger. You should try it!)

Can’t the doctors do anything for you? (I’ve never asked)

You better not overdo it. (Just waking up today hurt)

You can have just a little, right? I mean, it won’t kill you! (Says the person who won’t be up all night in the bathroom crying)

You cry in the bathroom? Why? (No, of course I don’t cry. You can’t prove it.)

You make it out to be such a big deal. (Usually said by someone you haven’t talked to in weeks)

You know, when you get sick, it’s hard on all of us. (Like that ball of guilt will help?)

You can go, it’s just at their house. (And its always comfortable to ditch a small gathering for a half hour and kill another persons bathroom. Hope they have a fan, toilet paper, patience, sense of humor, everyone pretending you didn’t just do that)

Wow, you are still upbeat about it all! (Yes, I’ve found that kicking a toilet and screaming really doesn’t do anything good. Humor is my only defense)

My uncle only flares up when he’s stressed. (Either he is flaring all the time or he’s a monk)

Maybe getting crohn’s is a blessing. (Well, I do do a lot of praying – please please stop, I just want to rest)

When was your last flare up? (When have I ever not been flaring?)

You can’t have crohn’s and colitis. Only one or the other. (Really? Can you send that memo to my gut? Here’s the mail chute)

How do you handle it? (I don’t. It takes everything I have got to hide the pain, pressure, guilt, fear and anger I am feeling.)

You seem fine. (Then my acting has improved)

It will get better/easier. (When?)

Can we go on the trampoline? (The things we do for our kids!)

Yes, crohn’s suck. Any disease that causes pain and discomfort is horrible. The guilt alone that we face when we feel we are imposing on someone or causing disappoint eats us up. Like the disease. A good attitude really does help. (Insert eye roll if you’d like, but it really does)

When I was first diagnosed, I really lost all hope. I was sick non-stop for months that turned into years. It wasn’t anything like my mom’s crohn’s; or your aunt’s, his mailman’s, her dog. It was living hell. Trying a new medicine every couple of weeks only for it to fail and my hope would fall further. I spent so much time in the hospital, I knew which vein could last more than 12 hours, I knew the tricks for getting the better night nurse, heck, I could have set up my own IV and med machine. In fact, I already could disarm those blasted alarms. What I couldn’t do, is know what worked. What could I eat without dying afterwards? Why did action “a” only sometimes equal reaction “b”? It changed every flipping day. I swear, crohn’s is this spazzy little kid high on sugar bouncing from one thing to another, tearing down the walls and cackling. I’d go left, it went right. I’d make a play to get a handle on it, it would duck and hide. I could run, but it always caught me. It could run, and I’d never get close. It felt like I was battling myself in some epic sci-fi war where only one of us would come out alive.

Some nights, I let the crohn’s win. Some weeks it would win. I got depressed. I got angry, at myself. I was disappointed, in myself. I felt ripped off. I wasn’t sure if I wanted to live a life with crohn’s. Then, I would turn it around and feel strong and feisty and ready to fight. Repeat and rinse.

Everyone said it would get better. I’d understand it more as time went on. I’d get it under control. After a few years, I still didn’t believe these Pollyanna types. Then, it changed, just a little.

I finally understood. Crohn’s Disease is only two words; not a sentence. It was some I had, it didn’t have me! I could beat this thing. Then I would flare and doubt would sink in again.

This would go on and on until finally the remission times between flares would be just a tad longer than the last time, allowing me to get that much stronger than before. Finally, I might be feeling pretty good for a couple months at a time. During that time, I’d have a positive attitude and feel like I won. When I flared, it would take more than a couple bathroom trips to knock me down and even then, it wouldn’t put me completely out of the game. Time did go on and it really did get better.

My crohn’s didn’t ever really improve. Sometimes a medicine might work or I wouldn’t flare for as long or as often but it basically stayed the same. It hated my guts and I wasn’t too fond of it either. However, the way I looked at it, my disease, did change. I couldn’t let it define me, control me, beat me.

I make jokes, like most crohnies. I deal with other auto-immune disease, like most crohnies. I struggle and adapt and keep moving one foot in front of another, like most crohnies. I research it more than any doctor I know, like most crohnies. I know medicines better than a pharmacist, like most crohnies. That’s when I understood, I’m just like most crohnies….except what works for you, might not work for me and vice versa. But we will try anything. Us crohnies, are a gutsy group.

So, keep your chin up. Face this flare up with smile. Sit on your comfy toilet (isn’t it sad we know toilet brands and features as well as a plumber? Oh, I do love the extra tall ones, and your seat is much nicer than my current one) and get stronger. Use humor when you can but cry if you have to. You do deserve special treatment, only it’s up to you to give it to yourself. Don’t overdo it, and don’t feel you have to explain yourself to others. If you can’t do something, just say that. Don’t feel you have to give reasons or excuses. You just can’t or don’t want to. Let the other person deal with it. Eat what you want when you can. Enjoy your life in any small segment you can. Even the worst crappiest days ever, can be dealt with if you don’t pile on the self guilt. It’s hard but I think that’s what people mean when they say it gets easier. The disease stays the same, gets better, gets worse but how you look at it and deal with it, does change.

Stay positive (when you can) and go kick your own ass!

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Real Crohnie – Real Struggles

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I had already had several really bad stomach cramps. I had already pooped my pants in public. I had already spent hours and hours in the bathroom. I finally learned I had Crohn’s.

I did what I would advise people not to do. I looked up Crohn’s on the Internet. This was 1998 and I had limited knowledge of the web. Being exposed to pictures showing the worst of the disease was really not something I should have been looking at during work hours, well, ever! Don’t do it. Don’t look up some medical thing, especially images. Yet, we’ve all done it. And we’ll probably do it again.

So I sat at my desk and cried. Why I looked it up is still a mystery for me because I had grown up with a mother who has crohn’s. I already was familiar with the disease. Yet, when the doc scoped me and said it was the worst case of crohn’s┬áhe had seen and asked me how I was dealing with the pain, I freaked out.

My mom had been in the hospital twice when I was growing up. I knew she had to be careful with what she ate, she got tired easily and sometimes took pain meds. I also knew that she spent a long time in the bathroom. Even though she deals with it on a daily basis, she has a mild form of the disease. That wasn’t my case.

Within a few weeks of finding out, I had my first two week stay in the hospital. Immediately, the docs saw my case was anything but normal. I went anaphylactic on meds, I broke into rashes, my IV had to be changed every 12 hours, I absorbed pain meds like a junkie, and nothing seemed to want to work.

After 30+ hospital trips, featuring several different hospitals in two different cities, I can honestly declare that hospitals suck. Once you can eat, the food is gross. The nurses range from rock stars to “oh, man, please not her again”. Guests either never show making you feel lonely or stay too long, turning you into a hostess. It’s just rough on everyone.

I was the first person at my Oregon hospital to try Remicade, which had been approved for use only days before. It worked great….at first. Like all good crohnies, what works at first, might not later. Remicade worked well but I still had to take handfuls of other meds as well. In fact, I took meds to help with the side effects of other meds. Handfuls.

Around this time, working became impossible and I struggled to stay out of the hospital for two months at a time. Always staying at least two weeks, and once a whole month. Lots of people ask why? Fluids, pain management and usually high doses of steroids (fun fun).

This was before docs knew better than to prescribe 120mg of Prednisone, so I got slammed. I gained 80 pounds despite being unable to hold down food. I never slept. I got depressed then I went psychotic. I’m not proud of what I put my friends and family through, but I also totally blame the meds. After a couple of months, I was dropped to 100mg and stayed at that dose for a couple of months. Doctors misdiagnosed me as bi-polar because that amount of steroids was wrecking havoc on all aspects of mental functioning.

Meanwhile, I’m on this med and that med, getting Remicade transfusions and still visiting the nurses at the hospital every couple of months. My husband struggled with it but stood by me. In fact, he would come home on his lunch breaks to make sure I’d take my meds and get me some lunch. He’s so incredible.

My friends all but disappeared. After I bailed on plans, missed parties, couldn’t commit, backed out of promises, no one wanted to be friends with a sickie. I can’t really blame them yet, to be honest, I totally do. It’s hard to stay friends with people that only want to be around during the good times and split as soon as the admission papers are signed.

It was hard on my mom. She knew about Crohn’s in her limited experience and couldn’t understand why nothing that worked for her, would work on me. Oddly, during her third major flare in 30 years, the doctors removed some of her gut and she’s been great since. I say oddly because in all my battling, surgery was only mentioned once and not in a positive way.

Perhaps, surgery isn’t an option because the more they scope me the more complex my case becomes. I have crohns, but I also have colitis. I might have celiac disease but nothing has been conclusive. I also deal with all the crap those with autoimmune diseases deal with, fibromyalgia and symptoms that mimic other diseases. My disease runs from my mouth to my anus. I get mouth sore, nodes on my legs and bruising so bad, my husband begs me to wear long sleeves. (He has never ever put me in a box and tossed me down a hill, it only looks like that could have happened) I also have different doctors than my mom.

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I found out I was pregnant only a week after a dose of Remicade. I was scared. Some doctors warned me against carrying my surprise baby to term. Others said I was safe. I believed the latter. At 7 months pregnant, our little girl stopped breathing in utero and died. While its rare, I can’t directly blame the medicine either, but I totally do. I gave birth and promptly had the worst flare ever. A month long hospital trip was my prize.

Very quickly after I got my strength back, we tried for a baby. We hadn’t been ready, but losing my angel changed that. We got pregnant fast but my past miscarriages and then the stillbirth taught my not to count any chickens before the eggs were hatched. Like the pregnancies before, everything went smooth – except it was hard to control my anxiety at times. In 2002, I gave birth to a healthy baby boy. And I stayed in remission!

After 10 amazing months of motherhood, I flared. They tried Remicade and it failed. They couldn’t give me high doses of steroids because I had developed Addison’s disease and my adrenal glands no longer produced cortisol so I take low doses daily. (Thanks first GI, hoped you learned from that little oopsy) We had tried experimental, traditional, basically anything ever suggested as a possible assist, we tried. I’d either be allergic, it might work for a few weeks before failing, or it never worked from the get go. I was hospitalized in a city 100 miles away from my baby. That was crushing.

After several more hospital trips, I got serious with my docs about limiting my meds and tried to make some significant strides. I had felt awesome when I was pregnant and not on any meds, yet felt like crap when flaring and placed on handfuls of drugs.

Some of my doctors are forward thinking, others like to play things safe. About 8 years ago, I tried TSO. That’s pig whipworm eggs. I’d digest them and they would hatch in my gut. My body would then fight them instead of itself and then after a few weeks, expel them and I’d start over again. That was the plan anyway. The vials came from Germany and were ridiculously expensive. I had to get so many approvals from places like the USDA, prove I wasn’t a pig farmer and so on. so when the FedEx guy tossed the package of glass vials on my porch, I prayed none broke. A program called, From Beyond, filmed me and my family for their Discovery Health show. It was an exciting time, I felt I had beat the odds. Then I flared again. And again.

Getting the Addison’s part under control helped a ton. Everything started to smooth out slowly. I was finally feeling better and wasn’t on a ton of medicines. I had a nice couple of years where everything was in a nice moderate stage. Nice. Then, boom, when Crohns wants to come out and play, it does. My crohns happens to be a spaz.

Last fall, my health went from pretty good to horrible in one day. All of a sudden, nothing stayed down. I threw up everything I tried to eat, spent hours rushing to the bathroom dozens of times a day, my body hurt. I did as I was instructed, except I wouldn’t go to the hospital. Flat out refused. I could push my on fluids, I didn’t want to rely on pain meds this round and I can’t take high doses of steroids so really, anything the hospital would do, I could do. It took tons of help from my husband and son to stay at home. They pretty much catered to my needs as I laid in bed for a couple of months.

I missed out on school events. I pushed myself then would slide backwards. As the holidays approached, I panicked and faked feeling better. Us, crohnies, we fake feeling better so well we really deserve an award. My health suffered and I lost tons of weight.

My husband has always been a yo-yo bouncing from one extreme to another. He had let his weight go and was eating really poorly. As a result, our son was eating only junk while I was still struggling to hold down jello. At the beginning of 2013, my husband went into a huge health kick. One that looks promising, like it might be a forever change, for real this time. (You can read about our story and his 70+ pound weight loss here: http://wp.me/p3CR61-1t)

I decided to once again, not follow doctors advice. Another thing crohnies get good at, practicing medicine without a degree. My GI has always suggested a bland, all white, processed diet; especially while flaring. I decided to eat healthy; fresh foods, fruits, veggies, basically everything off the do not eat list.

At first, my gut flipped out. Then again, it hadn’t really ever stopped flipping out since the flare began in September. I pushed through and my gut adapted! Soon, I wasn’t cramping as bad after meals. I was, but a normal amount. I was still going to the bathroom over a dozen times a day, but that has become my normal so food wasn’t really effecting that, negatively or positively. Then, I really ticked off my docs. I decided to come off some of my meds. For the first time in a decade, I was off my pain meds, off anything “extra” and off anything I didn’t think was helping.

I can’t say I’m in remission right now, but I’m also not in bed crying, or rushing out of a store with poop in my pants. I’m more active than I have been in the last nine months. I’m happier. I’m eating all the things the doctors stay not to eat. My doctor knows and is hesitant but I think she’s still mad that I refuse to go to the hospital, even for a scope and that I love to play doctor and make whatever changes I want. She’s dealing with my rebelling, I’m sure she would get along with my parents.

My husband has stopped eating all animal products and I call him vegan, he says he eats an all plant based whole food diet. Same dif. Now, I’d do that far and slowly I am trying. I know meat isn’t the easiest thing to digest and if I was trying harder to get my crohns into remission, meat and dairy would be some of the first things to go. But, I’m picky. I’m so picky that picky people make fun of me. I’m so picky, the idea of trying something new scares me. I run to the bathroom, ok, only to hide but still….what if whatever I try is so gross, I puke, on the table, in front of everyone??? What if…..

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I’m trying. I’ve been cooking and baking vegan recipes for my husband, Mr Vegan, like the one pictured above. (That’s @Engine2Diet Mac not Cheese, and one day I hope my plate will look like that) I’m trying it all to encourage my son, Sir Picky to try it as well. I’m finding I like some of them (beans, huh) or at least I can hide it in a salad (kale please pretend you are green leaf) Although, the concept of hiding yucky food in yummy food doesn’t really work on me since I’m the one cooking it. Even if I didn’t, I’m pretty sure I could spot a pea hiding in my noodle.

As I try to train my taste buds and get brave, I’m blogging. I’m hoping to share recipes, share my stories, learn from you and share what I have learned. Mostly, I’m hoping this crohnie will one day soon, become Mrs Vegan, for real.