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Lizzy's Crohn's Blog

Hello everyone,

I'm Elizabeth, but you can call me Lizzy. I'm a 22-year old college student/programming assistant living in Southern Oregon.

I started having symptoms in January of this year. I'd have to run to the bathroom 3-10 times a day. In April, I went to the doctor. They told me it was IBS and said to eat more yogurt and take Immodium. Needless to say, that didn't really help alleviate my issues.

In June, I developed a perineal skin tag that has still yet to go away. In September, the diarrhea got so bad that I lost my bowels - twice. It was then that I went back to the doctor. They sent me to a local gastroenterologist, who ordered a blood panel and found that I was extremely anemic.

I lost 50 pounds over the past year, but I'm not really complaining about that symptom. I wouldn't want to lose anymore, though.

My symptoms worsened last month, and I started feeling very tired and having constant back and neck pain. I've also been having issues with dehydration.

Last Monday, I went in for a colonoscopy. When I woke up, the doctor told me that it looks like I have crohn's disease. As odd as it sounds, I felt so relieved. I finally knew what was wrong with me.

Right now I'm on Pentasa, and I'm supposed to be on prednisone, but I misplaced the bottle. While my digestion has gotten a little better over the past week and a half, I'm still having a lot of back and neck pain.

I'm looking forward to meeting some new friends.

Looking forward to hearing from you,
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Hi lizzy and welcome :)

Its hard to first hear you have Crohns, but now you know what you have and are receiving medication to make it better. I am close in age to you (19) so I can relate going to school and dealing with this problem. One of the best things my doctor told me was to stay hydraded and if possible always have a bottle of water with me.

I hope you start feeling a lot better and welcome to the forum
welcome to our little corner of the web Lizzy, glad you found us!

sorry to hear of your diagnosis, but your right with the attitude that you now know what it is that needs to be treated.

Welcome Lizzy, I'm 20, so close to your age as well. I'm also in college. I wanted to let you know that its a bad idea to lose your prednisone, it can cause lots of bad side effects if you just stop taking it. You have to be weaned off of it. I forget what some of the things it can do to you are, but some others here know, maybe they'll have some input.

Good luck with everything, and I'm glad to hear you got your diagnosis.
Hi everyone.

I guess I'll just make this my Crohn's blog for now.

Today, I had an epic shopping trip planned, but I only made it through two stores before getting too tired to continue. The Pentasa seems to be working digestively, but I'm just so tired and achy. Hopefully, my blood work will shed some light on what's going on with my fatigue. I took some vicodin when the back and neck pain got pretty bad.

I'm supposed to start on the prednisone tomorrow, but I really don't want to. I've heard such awful stories about the side effects and I'm feeling scared and vain.

My Butt Hurts

Hi Lizzy, welcome to the forum.
You're bound to be a bit tired while shopping with the state t hat your body is in right now.
Don't worry about starting prednisone. Some people react to it very well with with few side effects. You won't know how it's going to treat you until you try it. And, it can really help your symptoms. A few years ago I went from 10 Bms a day to 2 or 3 just using pred and pentasa.
Good luck, and feel better!
I might be going to the hospital today. I'm not sure.

I thought the Pentasa was helping the digestion, but at this point, I'm not having any digestion at all. I haven't had a bowel movement in two or three days and I'm experiencing a considerable amount of stomach pain.

I'm new to this, so I'm not sure if this is something to be really concerned about or normal. I'm a bit scared.
Definitely contact your doctor if you are in a lot of pain and not pooping.

I had to go into the hospital to get Prednisone intravenously because my
body wasn't responding to the steroids orally. Everyone's body is different.

And about the side effects, they can sound scary, but you have to weight
the benefits and the risks.

Surgery should be your doctor's last resort.
There are a variety of medicines to try to put you into remission before
surgery is needed, do don't assume surgery is knocking at your door
just yet! Call your doctor, see what they say and keep us posted!


Hey lizzy welcome to the forums you've come to the right place. Lots of experienced members and very friendly atmosphere. It can all be daunting at first but like pen said in time you will come to read the signs your body gives out. Pred is great for clearing things up, I hope you are side effect free! :)


welcome to the crappy tummy club. we offer excellent deals on 3 ply toilet paper and for those rough days, a free bottle of extra strength Drain-o.
Started the prednisone today. 40 mg for 5 days, 30 for 7 days, 20 for 7 days, and 10 for 7 days.

I'm scared about weight gain and moon face, but I just want to get it out of the way so I don't have to worry about it anymore.
just so you know, I WISH I had weight gain, but don't. And I've been on high
doses of Pred for almost 6 weeks now. I just got moonface last week, and
it's not so bad because I'm already too skinny, so it makes my face look normal :lol:
I'm the only one who noticed it puffed up.
I know. It's just such a weird transition for me, because when I started having Crohn's symptoms, I was about 15 pounds overweight. Losing the weight has been a bit of a blessing in disguise, as awful as that sounds, and putting it back on feels like failure for some reason.

Anyway, trying to stay positive. Here's some pictures.

My wonderful fiance and I.

My lovely best friend giving me kisses.

Being silly with friends. I'm in the purple coat.

About 30-35 pounds heavier, before Crohns.

40 pounds heavier, before Crohn's.
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and might i also add

red head, gurgle..... buit thats another story.

and also, thats some damn good prep you've done there! mine were never that good:*(
Hahaha. The doctors are very thorough with their prep orders. A whole bottle of Miralax in orange gatorade, four durolax pills, and an entire bottle of magnesium citrate.
Day two of the prednisone. Feeling okay. No side effects to speak of yet.

Was able to make it to the grocery store and run a few errands without getting too tired.

Thursday is the last day of the term. I can't believe I made it through! It's been a rough couple of months.
lol, i think my day two went something like

"mowed the lawn, cut the hedge, did dishes, washed cars (including 3 neighbours cars), vacuumed, did dishes again for fun, washed windows and got cars dirty so washed them all again, treaded mud inside so revacuumed, made breakfast lunch and dinner (ate them all at once), finished day with a marathon run. think i'll sleep again for 5 minutes then get up and do it again"

glad to hear you went OK today!
Uh oh. Gained two pounds overnight.

Feeling incredibly antsy this afternoon. I'm going to try to head to the gym before my final this evening to try to work off some of this excess energy.
I've gained four pounds in five days and I'm sort of freaking out. Luckily, I go down to 30 mg. tomorrow. Maybe the weight gain will slow down. I hate feeling like I don't have control of what my body is doing.
Had a lovely weekend, but I'm not doing too well at the moment.

Tapered down to 30 mg. of prednisone today. Also, started having some PMS symptoms. Had a lovely dinner of chicken and garlic mashed potatoes with friends.

And now, several hours later, I'm feeling very ill indeed. I'm not sure if it's because of the tapering, the PMS, or the food. Either way, I didn't properly digest an ounce of what I ate today, and now I can't get to sleep.

I just popped a few Tylenol PM tablets. Hopefully that'll knock me out. I'm dreading having to call in sick to work tomorrow. I hate feeling like I'm letting people down.
Don't worry about the weight gain Lizzy. Seriously. I was on Pred for 6 months ... I was overweight before getting ill, I was at 230, dropped to 155 in the span of about 3-4 months, then the pred put me back at 240! .. I've been Pred free for 6 months now and I'm back down to 169, so don't sweat it .. for reals =)
Another thing to keep in mind is that, even for a totally healthy individual, weight can fluctuate by as much as 5 pounds in a single day. In order not to drive yourself mad, then best not to step on the scale every day. Getting weighed about once a week would be a better gauge of weight changes over time. I recently obtained a great digital scale and had to really discipline myself not to step on it more than once a week.
I've been on Pred for 7 weeks now. NO weight gain whatsoever. 2 of those weeks
were through IV, which is a lot stronger. And from what other people say who
do gain, it's a lot of water bloat and comes off afterward.
Nothing to do with Crohn's, but I thought I'd post these pictures to lift my low spirits.

I got to try on my wedding dress over Thanksgiving break! Now, of course, my wedding will not be as cool as Mrs. MINI McPirate, but I'm excited nonetheless.

I'm very, very excited. Let's hope the manboy thinks the dress is charming.


ele mental leprechaun
Looking fantastic Lizzy!

I go later today to start my search and try on wedding dresses for the first time so am looking forward to it - I think! LOL

Thankfully we arent getting married til Nov 09 so will have some time to plan!
soupdragon69 said:
Looking fantastic Lizzy!

I go later today to start my search and try on wedding dresses for the first time so am looking forward to it - I think! LOL

Thankfully we arent getting married til Nov 09 so will have some time to plan!
I didn't know you were getting married too! :congratualtions:
You guys should start a wedding thread :)
Lizzy, I like that length too, it's very unique.
The length is what sold me. I wasn't even looking to buy a dress, as our wedding date is September 24th, 2010 (!) but I saw it in the window and swept it right up. It was the first dress I tried on. Hahaha.
look lizzy, if you've just posted those picture so you can have people swoon over you then.........

YOU WINS!!!!!!!!!


Looks very nice kiddo!

ummm, i hope hubby doesnt come to this site, would be naughty for him to see you in that dress...


ele mental leprechaun
Well my "dress" is all sorted too as of today!

Tried on 10-12 different dresses/outfits and towards the end she said this one is like marmite - you will either love it or hate it! LOL

I LOVED it!! I actually said to the girl in the shop that I was only mainly looking for ideas and also to find out the sort of styles that suited me today. BUT hey presto I found "the one" and am totally gobsmacked.

So sometimes Lizzy as Cassie says "it was meant to be yours" is very accurate and true!

Thanks for the congrats Cassie. I did do a "getting married thread" on the anything goes but it was back at the beginning of Sept and I dont think you were around then??

Anyway, the coming months will be fun I think. Am absolutely exhausted tonight after all the fun this afternoon but it was worth it!

Sorry for hijacking your thread Lizzie!! Keep planning girl!
I would much rather have my thread be hijacked by happy wedding gushing than have it be a sad little monologue about a girl with crohn's. Hijack away!

Do you have a picture of your dress-to-be?

My Butt Hurts

That is a hugie part of planning - finding the perfect dress, and you're both done with that!
Weddings... ahhh......


ele mental leprechaun
Erm yeah I do.... on my mobile but dont have the gizmo to transfer it to my comp with me.

Will try and figure it out in the next few days. I will say this though... its VERY VERY different and not at all what I thought it would be like!

I also wasnt sure what my parents would think but they actually like it and I nearly fell over in shock at that one!

Will post the photo when I can..
So, tapering down to 20 mg. of prednisone, but I feel like I've been run over by a bus. Aching all over and feeling really fatigued. Blegh.

Doctor wants to put me on humira, but I'm losing my primary insurance at the end of the month and it's probably too expensive. We're going to try imuran along with the pentasa and the prednisone, instead.

I think I'm going to try to nap. I feel awful.


ele mental leprechaun
Am sorry you are both feeling rotten girls.

I am down to 20mg from tomorrow and not looking forward to it as you know I always end up with 2-3 rough days anyway. My next remicade is due 30th Dec.

Overall I seem to be picking up. Have had a rough time this weekend due to other problems family wise and am wiped out emotionally and physically for that reason alone. Have to re increase my painkillers from yesterday as a result but hoping things will level out again in a few days..

We are having a day at home to rest and recover and it sounds like you both need a "duvet" day.

Sending you both leprechaun ((Hugs)) and thinking of you!!
Hey there,

Thought I would check out your thread after you posted in mine! So before you tapered your prednisone to 20mg were you feeling good, ie., no aches/pains? Or did you always have them during the higher doses? I read all your prednisone related posts in this thread and didn't see anything where you mentioned it was helping the pains. And what sort of pains are they, arthritic/joint pains?

As I mentioned in the other thread I'm thrilled with prednisone *so far* but currently there are no plans to taper my 8 pills (40mg) per day, so I hope my doctor isn't planning on having me on these for a really long time. On the other hand I would be afraid to start tapering already if my flare-up isn't extinguished yet. Maybe I should just stop worrying so much, I'm liable to give myself stomach aches from stress never mind crohns..

Congratulations on your wedding! You look great before and after the weight loss so don't worry about gaining it back :)


lizzy_forrest said:
So, tapering down to 20 mg. of prednisone, but I feel like I've been run over by a bus. Aching all over and feeling really fatigued. Blegh.

Doctor wants to put me on humira, but I'm losing my primary insurance at the end of the month and it's probably too expensive. We're going to try imuran along with the pentasa and the prednisone, instead.

I think I'm going to try to nap. I feel awful.
My birthday was fun. A little on the sleepy side, but fun. My co-workers decorated my cubicle and got me a cake, and my loving boy took me out to Thai food. Mmm, pad thai! Not the best diet choices for Crohnsies, but hey, it was my birthday!

I started on imuran yesterday, on top of the pentasa and the prednisone. I seem to be doing fairly well. I feel worlds better than I did a month ago. However, things are about to get interesting. Since I turned 23 yesterday, I will no longer be covered by my parents' insurance as of January 1st. This should be a challenge.


ele mental leprechaun
Belated congrats Lizzy for your birthday!!

Hope all works out in the coming year on the insurance front for you and your health continues to improve in steady steps too honey.

I just want to sleep. Is that so much to ask?

Last night, I managed to squeeze in nine hours of sleep, but that was only because I took Tylenol PM. Aside from last night, I haven't had a steady, uninterrupted night of sleep in weeks. All week long, I would wake up every hour or so and then take another half hour to get back to sleep. I was hoping the insomnia would go away after tapering of the prednisone, but here I am, up at 4:00 AM again.

I had made plans for tomorrow, but now I don't know how I'm going to be able to function on no sleep. I don't know how I'm going to survive this term if I can't sleep.
You doctor didn't give you any prescription sleeping pills with the Pred?
They usually do, mine did, though insomnia isn't a side effect I get from
Pred, so I haven't needed them. Maybe you should ask your doctor for some?
At least let the know you're having trouble. Believe me, I bother my doctors
with every little annoyance I have, and I stopped feeling bad about it a LONG
time ago! You need your sleep!
Ugh, I think I'm getting worse again. My abdomen has felt so tender and achy for the past day, and I'm getting sores in my mouth.

This sucks.
Yeah, I'm not doing well again. When does one know to go to the hospital? That's what I want to know.

I started out fine today. A little low on energy, but I had no morning pain or diarrhea. And then, right after noon, I was hit with it out of nowhere. First came the steady burning all up and down my abdomen. Then, I almost had an accident. I thought I had, actually, and I darted from my cubicle to the bathroom fully expecting to find my pants full of poo. Instead, I spend the next twenty minutes in the bathroom with the most painful evacuation of the bowels.

My fissure (or fistula, I don't know, it was never given a name) is ripping open even more, and is agitated from the stomach acid pouring out of me. My entire abdomen is burning and I don't have any energy anymore.

I don't know what to do and I'm scared.
Calling the doctor tomorrow.
I've missed so much school and work and it's only February.
lizzy - when is the wedding?
I am a wedding coordinator and consultant - pretty new to the field, but I every intimidating book you have encountered I have read inside and out... getting ready for the big bridal expo this weekend.. i have attended everyone on the island, and this one is where furiousrose makes its grand appearance.
If you have any questions or need anything at all, please ask

Mini - since being here I have heard tons of references to yours, i would love to see pics