Crohn's Disease

ACCBootlegGoddess · May 2005

Wow Great thread!

I'm sure many of you have seen me mention a morning lactose intolerance in some of the threads I replied to a while back. The last few months I've been thinking that its something more. I have cut back on Dairy products and tried to stick to what I consider "Safe foods" but I still have....for lack of a better word, attacks. The pain is not debilitating like the stories I have read here, but it does hurt...usually its just really bad gas and it eventually clears or its the...get yer ass to the toilet NOW pain, and it is ok when I'm finished. Usually its the latter actually. When I don't get the right sleep or whatever I wake up with a stomach ache and the whole day I'm in the painful gas bubble...case of the farts, back to the painful gas bubble cycle for most of the day. Its embarissing and painful, but such is life for me.

I have a couple of friends with IBS and a co-worker who's had gall bladder problems. I've spoken to them at length about my situation and I definately have to get to a doctor to get a proper diagnosis. I have come to my own conclusion that I more than likely have a mild case of IBS.
I had no idea till I started talking about it, how many people I knew who had it...and Its really awesome that you all are so open about it and supportive of each other.
I hope that when I do get it checked out they can help me manage this so that I don't have to be really unhealthy to control this. When I travel I just don't eat cause I dunno whats going to set me off and you all know what its like on a plane or driving in the middle of nowhere...bathroom is not easily accessible. I'm used to going long periods of time without food, but I know its really unhealthy to do that so I'd love to find a way to be healthy when travelling without constant worry ya know.

Anyways I've rambled on long enough. If you've made it this far thanks for reading.

ohh and Russty....I'm so happy you're heading up here in the fall. I'd love to meet you at one of the shows.

PissBottleMan · May 2005

Hey guys, I am going in for my first batch of Remicade this morning. I'll report back later on today.

Wish me luck.

PBM

Alive-2005 · May 2005

PissBottleMan wrote:

Hey guys, I am going in for my first batch of Remicade this morning. I'll report back later on today.

Wish me luck.

PBM

Good Luck!!!

PJChic9 · May 2005

Good luck to everyone dealing with these ailments. It sux. As for me my stomach etc etc has felt like a pile of shit most of the month. I went to a GI and he did an ultrasound and found nothing. So this Friday I am going in for an endoscopy and colonoscopy (sp?). Eek. A few other people in my family have had them, but I guess years ago they made them do it w/ out putting u out, which would suck, so apprently I wont remember anything, but still nervous. Especially for the prep. I have to drink this nasty shit on thurs, and clear liquids, which sounds worse than the procedure itself. Anyway, be thinking of me, and I know some of you have had this done, so if you have any suggestions lemme know...eekk..im scared...thanks:)

PissBottleMan · May 2005

PJChic9 wrote:

I have to drink this nasty shit on thurs

For my last two colonoscopy's I've taken the pills instead of drinking the liquid. It is so much better....if you take pills alright. You have to take like 20 pills over the course of 2 hours.

As for the procedure itself...it's nothing to worry about. They give you good drugs and you get the day off of work.

Just make sure they do the endoscopy first...you don't want them to put that camera down your throat after your colonoscopy.

PBM

KAOS70 · May 2005

PissBottleMan wrote:

Hey guys, I am going in for my first batch of Remicade this morning. I'll report back later on today.

Wish me luck.

PBM

Let me know how that works for you. I just found out today that I have to go in for another colonoscopy :eek:, second one in 6 months. Meds aren't helping. Doc said he wants to go back in for another look before he keeps giving me more meds. He mentioned that if it was something meds aren't going to help about possible surgery. No good choices here, either go on Prednazone to temporarily get over the hump, but the doctor said eventually we would have came to the point of doing another colonoscopy. God! Can't wait to drink that yummy phospho-soda

This is a sucky thing so I have to make some sort of an attempt at a joke! It is NOT fun!

Good luck with the Remicade!

PJChic9 · May 2005

lol ew wi never thought about it that way......hopefully they will put it down my throat first..:)

ya i wish i had those pills that shit SUCKED. More than anything that has ever SUCKED before. The first dose was horriblle, then w/in 5 min a threw up, then the fun began, and then against my wishes i had to take the second dose, after 3 sips threw up, then finshed it and then more fun, on my way to the outpatient place. yay... thanks guys....later:)

PissBottleMan · May 2005

KAOS70,

So far, I haven't noticed a change. However, I've heard it can take a while.

PJChic9,

I feel for you. I mixed that Fleet stuff with 7-up for my first colonoscopy and I've never looked at 7-up the same way.

Good luck to everyone.

PBM

PJChic9 · May 2005

Thanks pbm. Ya it said to mix w/ water so I did, it was so gross, plus it wa slike lemon flavor or something, so like after the frist dose after i downed a bunch of water, i wanted some sprite, and then i wa slike eww lemon, so i dunno if ill be drinking that for a while, oh ya and i love lemon lime gatorade and i couldnt dirnk that yesterday either, ...that shit was so damn gross..omg.

Today went well. Everyone at this place was real nice, commenting on my tatoos and what not right before they put me out, lol... but ya i was gone, didnt feel a thing, just what i wanted, lol... but ya they found nothing, took a biopsy thats it, so im gonna get treated for ibs, fun fun..Guess it could be worse.. Later dudes!:)

PJfanFORlife · May 2005

I just got my dose of remicade. And like usual I start feeling better that week. I am so siked cause I wasn't feeling well there for a minute, but now am feeling a little better. I have been on remicade since 9/02. It made a huge difference at first but not so much now. It is keeping me somewhat stable, but I am still having problems. I don't stress over it. i go on vacation next week. I am so excited. My wife and I need a break. We are going to the Smokey Mountain National Park in Tennessee. It is so beautiful there. Only one problem VERY FEW RESTROOMS. So when we are hiking I have to carry a small shovel, biodegradable wipes, and a backpack. You know just in case.

Take Care!!

KAOS70 · May 2005

I just found out my second colonoscopy is going to be this coming Tuesday, which means I can't eat on Memorial Day! But I'll get to have that Phospho-Soda that we all love SO much! :eek: -Ew! Just thinking about having to drink that makes me sick!

I'm a little nervous I guess of what he'll come to for a conclusion. As as yet, no meds are responding & the doctor said he wanted to do this before he puts me on something as powerful as Remicade, that's a scary thought too as my immune system is low already. No good alternatives here.

PBM, I hope the Remicade does start working soon & PJfanFORlife, enjoy that vacation!
Good luck to you all!

PJChic9 · May 2005

good luck that sux, that stuff is so damn nasty, eww...happy memorial day..geez..

charlotte28 · May 2005

I just want to say it's great to see so many people so open and supporting of each other here, I have IBS myself and I know a couple of people with Crohn's and both illnesses are horrible - in a weird way though it kind of helps to hear about other people going through the same things...good luck to you all!

)

PJMom · May 2005

I think it's great there are drugs that can help with this now. About 27 years ago, I suffered from Ulcerative Colitis and there were only two drugs to help--azulfadine and prednisone. Reading some of your experiences with testing (been there) and the nasty stuff you have to drink (that too) brings back some very painful memories. Happy to say it's all behind me now (no pun intended) as I had an ileostomy 25 years ago.

Be brave, young people! I'm so glad Mike has had a part in making more people aware of these two diseases. Back when I was a sufferer, this kind of thing was simply not discussed. Even to tell the doctor that I was incontinent was very difficult. Oh if only I had the line "I shit and I stink" at that time, how much easier it would have been. I still think it was amazing and incredibly brave of Mike to stand on that stage at the CCFA benefit in April and tell everyone that he shits his pants! Wow. And to think I had a hard time telling my DOCTOR that I had bloody diarrhea!

I wish you all better days ahead...healthier times and no pain. And remember that if the time ever comes when you have to have your intestines removed (with either a colostomy or ileostomy) it won't be the end of the world. You'll still be able to do everything you used to do, and one thing with a little modification!

KAOS70 · June 2005

Well, my colonoscopy that I had after memorial day went horribly wrong. They were supposed to use anesthesia this time because the last time I had it done (6 months ago) I came awake during the procedure in pain. Well, this time they really screwed up & didn't put down on my paperwork that I needed anesthesia, SO-the doctor said "Don't worry, we'll knock you out cold", so they gave me versed, phenergan & fentanyl, which did knock me out cold. But again, I came awake screaming in pain during the procedure, I have never felt pain like that. They said I should never have came awake w/ that much meds in me, but I sure as hell did & remember it well. They found a bunch of ulcers throughout my intestines, ileum, small bowel & colon. What fun! :(

So, I go for my first Remicade infusion on Wednesday. I am a little nervous because I don't really know what to expect & it's on the oncology floor (my Mom died of cancer) so I'm a little nervous about just being on that floor (a lot!) Wish me luck!

PBM: Did the Remicade start working any wonders for you yet? I'm worried of it lowering my immunity system. I have already lost so much weight.
Wish me luck!

PissBottleMan · June 2005

KAOS70 wrote:

So, I go for my first Remicade infusion on Wednesday. I am a little nervous because I don't really know what to expect & it's on the oncology floor (my Mom died of cancer) so I'm a little nervous about just being on that floor (a lot!) Wish me luck!

PBM: Did the Remicade start working any wonders for you yet? I'm worried of it lowering my immunity system. I have already lost so much weight.
Wish me luck!

Man, I hate to hear about all of your misfortune. It's been three weeks now for me, but I haven't noticed a lot of difference. However, my crohn's isn't as bad as some.

I have some depression problems to work on too. Having a chronic illness can really wear on you, so I am trying to deal with that.

Good luck to you and let us know how your Remicade goes.

Cheers to all,

PBM

SENROCK · June 2005

all you guys up in here
are such WAHHHHHHsome
people.......
I'm doing what i can
to help find a cure........

PissBottleMan · June 2005

SENROCK! wrote:

I'm doing what i can
to help find a cure........

She's walkin', yes indeed she's talkin'.

Cheers,

PBM

LowLight812 · June 2005

Hey there,

I know you posted a while ago, but I don't have much time to check the boards often. My roommate has Crohn's and although I do not have it, I know what you're going through. She has one of the most severe cases ever documented. She is going to be 26 on Wednesday, and she was diagnosed at 15. In the time that I've known her she has had 4 surgeries and 6 overall-- 3 of them major. She's had all of her intestines removed except for what she has to have to survive. She has been on so many medications over the years that her body has grown immune to most of them-- the poor girl lives in pain every day. She's getting married in November (to my other roommate) and it's looking doubtful for her to have kids. I'm not telling you all of this to try and scare you-- like I said, her case is extremely severe.

I'm sorry you are going through this b/c I have seen what it can do to a person. I'll keep you in my prayers and I hope the medications work for you. Hang in there!

lovebuzz · June 2005

Last fall my upset stomach/stomach pains/diarreah finally became unbearable. For the longest time, I just ignored it (not talking about medical problems runs in the family... the doctors asked "Why didn't you say something sooner?"... like they couldn't comprehend this might be something difficult to talk about). One of my worst bouts with it was, ironically enough, at the Reading VFC show. I was nearly doubled over for half the show (it was still one of the best I'd ever seen though!). I needed a bathroom but there was no WAY I was missing any of that show. I ran to the car thinking we could beat the crowd out of the parking garage and I could at least have the comfort of a private bathroom to get through it... bad choice. I ended up spending half the night on the toilet with a garbage can in front of me, stuff flowing out front and back (bleh!).

I started thinking about my symptoms and Crohn's, which I never would have heard of had it not been for Mike stepping up to the plate and raising awareness. I realized if someone like him can tell the whole world about his problem and not be embarrassed, I could at least go to a doctor. With the help of my wife, I gave in and finally went. Although I was initially diagnosed with an ulcer, they eventually figured out it was IBS. I was put on Librax (with clindinium) and have been feeling better.

What I've gone through is no where near as tough as those with full blown Crohns... I admire your strength and determination. Do your best to control it, don't let it control you.

Crohn's Disease

Comments

Categories