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Author Topic: crohns...again
hs123
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so it looks like i have crohns, which i'm not too happy about clearly...and i might have ulcerative colitis...
i have to have a colonoscopy... im really not happy right now... care to explain the colonoscopy?

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Leabug
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Aww, I'm sorry to hear that, hs123. Crohn's isn't fun, but you know, once it's under control, there's nothing to stop you from living a pretty darn normal life. It's not a death sentence. [Smile] (Something that took/is taking me a while to really believe, but hey, coming to grips with a diagnosis of a chronic illness is tough sometimes.)

Colonoscopies aren't so bad- I can now tell you from personal experience, having just had my first one a couple weeks ago. What they do is insert a thin, flexible instrument with a camera on it into your rectum and all along your large intestine, and they'll look for signs of Crohn's and Ulcerative Colitis as they withdraw the instrument.

You'll have to do a prep for your colonoscopy, which is the worst part in my opinion. You'll likely be drinking some form of liquid laxative the day before, and you'll be on the can for the better part of the evening. You'll also have to fast, only drinking clear fluids, for that day (or possibly a few days before- it varies). I hated the prep- the stuff I had to drink was called Golytely, and it tasted like a dirty salty old sock. [Eek!] I added some Crystal Light powder (since it doesn't contain sugar) to the stuff and it improved the taste quite a bit, so you can look into that as an option.

The actual colonoscopy itself is really no big deal. They'll sedate you, so you shouldn't feel much of anything- a lot of people actually sleep through the entire thing. I know I definately did- I remember them putting me into the room for the colonoscopy and next thing I knew I was waking up in recovery and being offered some juice and a scone. [Smile]

After the meds wear off, you're free to go. The only after-effects I noticed personally was having a bit of gas (they blow air into your intestines, since your intestinal walls are collapsed against each other when there's nothing in there- they gotta open things up so they can see), and feeling a little woozy from the meds for a couple of hours.

It's really not that huge a deal- I know I was really nervous about it, and was super relieved when it turned out to be a piece of cake (well, except chugging that nasty old sock water, but hey [Razz] ).

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Lea

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hs123
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Thanks for the crystal lite tip Lea... I'll definitely be trying it
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Willowy Girl
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I just wanted to echo what Leabug said about the procedure itself being not a big deal. My dad had one last week (and man he was dreading it) but afterwards he said he was surprised how well it went. Yay for sedatives!

He said even the prep wasn't as bad as he'd expected and after the whole thing was over he was just a bit out of it from the sedative but very hungry and we went for lunch. [Smile]

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hs123
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so, they said that all i had to do to prep for it was to take miralax tablets, because Im having a flare up and i've been going to the bathroom lately, he said he didn't want to do more harm by putting a lot of pressure on my digestive organs...
does that sound legitament... I've been out of school for over a week now, because I'm on the toilet 2/3 of the day!

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Leabug
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Yup, sometimes they do use tablets rather than the liquid stuff. As far as I understand it, they work to induce bowel movements in different ways entirely. Sometimes a GI will get a patient to take BOTH types of laxatives, even! So I think it seems legit to me. (And hey, that's good news at least- no dirty sock saltwater for you! [Razz] )

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Lea

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September
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I used only the tablets when I was staying at the hospital, as well. I'd been eating very little due to pain, and was on a lot of aggressive medication, so they figured I would be okay just using the tablets.

So yep, sounds legit to me.

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Johanna
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hs123
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hey all, so i had my colonoscopy today...still a little loopy...
he said he couldn't see into the part that he knew was inflamed, but i would've had to do a 4 day clean out... and i already had to go to the hospital last night with a severe migraine....
He said he's gonna look at more of the x-rays, but he thinks it's crohns, because it would be the most severe IBS anyone's ever seen...
glad it's over... but i don't remember a minute of it, thank you modern medicine!

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hs123
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So, I have Crohn's in my terminal ileum, and it does not feel good.
I'm not gonna lie, Im quite unhappy, and I've not been to school in about 3 weeks.
And now I have to go on Cortisone which is gonna make me gain weight... NOT HAPPY

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Leabug
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That sucks to hear [Frown] I have mine all over the place, but particularly bad spots in my terminal ileum as well. Do you know which corticosteroid they're putting you on? (Is it actually going to be straight cortisone? Cuz that's usually administered via IV or injection, as far as I understand. Most people are started out on a course of prednisone, which is a corticosteroid, and can be taken in pill form.)

Steroids do have crappy side effects- I'm on prednisone right now to manage my current flareup- but your doctor is putting you on it because they feel that the benefits of going on it outweigh the risks. Sure, you may gain a few pounds, but you know what? Isn't it worth it if you can have a better quality of life- potentially less diarrhea and pain, and being able to get back to your daily habits without all the interruption? [Smile] I may have a big swollen belly and extra body hair from my steroid treatment, amongst other less severe/annoying side effects, but at least I'm not in pain anymore, and actually digesting food now, right? It's all in how you look at it.

I know how hard it is to come to grips with this sort of stuff- it really ain't easy- so if you want to talk about it, please, feel free to rant or ask questions here. I'm going through very similar stuff right now myself, and I'm pretty new to it too, and it really does help to have someone to talk to. [Smile]

One thing you can do for yourself right now is to take it easy- make sure you're not pushing yourself too hard, because stress really does not help if you're in a big flare-up. (That's why I'm no longer a Scarleteen volunteer- I just have too much on my plate during this flare-up, and need to take things slower.) Relax, do things you enjoy that are low-impact physically, and avoid foods that you know contribute to your symptoms (many people with Crohn's find that fiber makes things worse, for example).

[ 03-15-2008, 03:43 AM: Message edited by: Leabug ]

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Lea

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hs123
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they put me on prednisone.
I'm more stressed out than ever. I haven't been to school in 3 weeks, and I keep thinking about all the work I'm going to have to make up, and if I'm even going to graduate.
People keep telling me to relax, but I don't know how that's even possible.
I haven't even been able to go to therapy in like,3 weeks. Im officially not allowed to eat like, anything, and I just feel really overwhelmed.

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September
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Everyone reacts differently to Prednisone, so it's not a given that you'll gain weight. Heck, I've reacted differently to it each of the four times I've been on it, and weight-gain's never been one of my symptoms. Besides, Prednisone's a very effective drug and who cares about a couple of pounds more if you can finally live your life again.

Also, there are things you can eat. Promise. You just need to know what to avoid. Generall, that tends to be anything with too much fiber, anything containing sugar, anything with lactose and anything that could cause gas. When I first got diagnosed and was told what foods to avoid, I felt totally overwhelmed, but it wasn't quite so bad. Try to start out by leaving out all of the things that could potentially cause discomfort. And then slowly add things back to your diet one by one. That way, you can figure out exactly what it is that you can and cannot eat.

(It can also help to acquaint yourself with food and get into the habit of cooking, that way you can get much more creative with the few things you can eat. The website I visited a lot when I first came to terms with being a Crohnie also has some neat recipes: http://pages.prodigy.net/mattgreen/ )

Flare-ups are stressful. They're painful, they make you feel vulnerable and frustrated and it can feel like you'll never live a normal life or get on top of your work again. But - they pass. And once you feel better again, you will be able to go to school again and catch up on your work. In the meantime, just be patient, listen to our body and take care of yourself.

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Johanna
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"The question is not who will let me, but who is going to stop me." -Ayn Rand

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hs123
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Well, my mom actually returned things to the grocery... The one thing I know works for me is yogurt. Not too much, just the right amount really does good things for my stomach.
But, so far as I know some of my favorite foods have been cut. I was told absolutely no nuts because they can get stuck in the pockets of your intestines if theyre inflamed, no corn, no brocoli, no beans (thats kindof obvious and i tried to stay away from beans before anyways)... I dunno, its just all kindof ridiculous sounding to me... Like, Broccoli... common!

Ive been on prednisone before and the side effects were awful. I gained like, 15 pounds, and was extremely aggitated. I've been on it a few times, and Ive had the same side effects every time. The only problem I really have is weight gain... You might know that people who were overweight at some point in their lives have a serious complex about gaining weight, and once I got my weight under control its just like, great, another thing to screw me over. Like, I learned a diet that worked for me, kept my weight normal and all that, and now I have to change it all again, and I already have this complex about gaining weight... UCH!
Im really overwhelmed and not happy.

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hs123
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Just one question... I really really like nuts, like cashews and peanuts are my favorite... But my doctor told me with the shape my intestines are in, the worst thing I could do for the time being is eat something like nuts that could get stuck in the pockets of my intestines, because they are inflamed and not shaped normally right now, so it's easy for them to get stuck, and cause problems...
Is this true? I mean, i trust my doctor, he did all the right tests at all the right times, I know he's really smart and all that, it's just, I can't imagine that one food could make everything suck... for lack of better words...

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Leabug
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Really, do NOT eat nuts. If you're really flaring up that badly, you could potentially develop an obstruction if a piece of a nut gets stuck, or they could get stuck in ulcerated areas too, just as a couple of examples. You can still have things like smooth peanut butter- just not the actual solid nut itself. And stay the heck away from popcorn especially, if your doctor didn't mention that! That stuff can create problems, and I've heard plenty of horror stories. (And as far as I understand, the broccoli thing is all about fiber- I guess broccoli has a lot of insoluble fiber that can be rough on your system.)

You know, you may not react the same way to prednisone this time, necessarily. This is my second round myself, and I'm having some different side effects from the first time. If you do find you're gaining a lot of weight, you can always talk to your doctor about that too- they may adjust your dosage if it seems out of control, or they may suggest diet changes to help out (for example, I was told to try to limit my salt intake because a lot of my weight gain and swelling was due to water retention).

And keep in mind that all these dietary things may only be temporary, too. I do know people who are able to return to eating broccoli and stuff when they're not having a flare- they just have to be very aware of when they're starting to have a flare again and cut that stuff back out pronto. Remember that the goal of treatment is to put you back into remission, basically- and the vast majority of people with Crohn's can live almost entirely normal lives when they're in remission. Heck, some people even go years and years without any flares once things are under control! [Smile]

[ 03-16-2008, 02:12 AM: Message edited by: Leabug ]

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Lea

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September
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The issue with broccoli is that, much like cauliflower, it can cause gas. Same with popcorn. That's why you really want to avoid those when you're flaring. But Lea is right - you can add those things back to your diet slowly once you get better.

And you know, it does get better. I remember that I felt pretty hopeless when I first got diagnosed. It felt like I'd never be healthy again. But once you learn to manage the disease, it doesn't seem quite so horrible anymore. And when you're in remission, you can almost forget you're sick. I've been in remission for two years now (*knocks on wood*), taking my meds and avoiding certain foods has become second nature, and I hardly feel different from a healthy person.

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Johanna
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Leabug
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(Ahh, thanks for the correction September- I actually had no idea it was due to those foods causing gas! I just figured it must be due to having trouble digesting dietary roughage or something, since I always seem to get really sick after eating lots of veggies! [Smile] )

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Lea

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hs123
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I'm so stressed out. I'm trying to get back into school but I'm so worried I'm not going to graduate. I can't stop worrying.
I met with my principal who was really nice about everything, but I still can't stop stressing out.
My stomach hurts particularly bad tonight. I dunno if it's because I'm anxious or I ate something gassy, or what...

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