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 he 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.

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4 responses »

  1. Hey Shell. sounds like you’ve had quite a struggle going. Glad to hear that things are looking up. I am all about educating people on health and the benefits of eating your daily servings of fruits and veggies to get or stay healthy! It’s amazing what those nutrients can do for the body – you just have to get your body in a place to accept them instead of fighting the difference between the drugs and the things that add to your inflammation.
    I would actually love to share a super food that I found with you (you may have seen it somewhere on one of my sites). It’s called NatraBurst and I would love to “gift” you a container if you’d like to try it/ For more information here’s a link http://deniserollf.124online.com/products/product_natra_burst.aspx (I have more in-depth list of ingredients I can e-mail you)
    Please feel free to contact me either on Facebook, e-mail (derollf@hotmail.com) or by phone (call or text) – if you’d be interested in trying something that makes getting your nutrients easier and more controllable.
    Keep blogging!!

    • That would be incredible. I’d definitely love to try it and would even blog about it using you as a referral. I’ve been looking at things like this hoping to get on a vegan track without having to maybe eat all the different thing.
      Thanks for the offer.

  2. Hey there – fellow IBD’er here. I just wanted to drop a note to support your blogging. I liked today’s post. Interestingly, for me, eating the exact opposite of you is what works best – mostly meat. The macaroni in you pic looks delicious, but it would curl me up in a ball. Its fascinating to me to see how much difference diet makes in managing the disease and what works is different for everyone.

    • The Mac is actually a Mac not cheese recipe from Engine 2 so there is no dairy. Meat settles fine most of the time, although if I’m flaring bad it doesn’t. I’d like to go vegan full-time but I’m so picky, toss a crohns gut on top of that and it’s hard.
      I think it is interesting how every gut reacts so differently. Maybe it’s the change we don’t like. Going from one stable food routine into another?
      Thanks for the support
      Follow me on twitter @shelljacobson

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