I have Crohn's Disease, but Crohn's disease doesnt have me....

[HumboldtReign]

Hey all-

Im new to this site, but not new to crohn's disease in the least.

I am a 23 year old male, and have been diagnosed with crohn's disease since i was 12. i have lived half my life with this disease, considering it took the doctor's nearly a year to diagnose me.

I have seen endoscopies, colonoscopies, prednisone, no prednisone, then more prednisone, herbal meds, accupuncture, surgery, Optimental nutrition drinks, IV infusions, you name it.

I have withstood horrible humiliation, teasing by peers, pain, depression, and all the other wonderful things Crohn's disease brings.

Yet, I have overcome. I received my bachelor's degree in political science at the age of 21. I currently am in the process of obtaining my pilot's license (yes, you have to get special medical certification). I work 40 hours a week at an awesome job.

I ride my motorcycle religiously as it is one of my only escapes. whatever works. i also love to play paintball. anything that can help ease your mind, do it.

I am currently on an IV treatment known as Remicade, taken every 8 weeks. I also take 6MP daily. I have never felt so good since ive had Crohn's.

The decision to take any medication should not be taken lightly. I was faced with the decision to start remicade 5 years ago when i was 18. I had battled with prednisone for years and it wasnt cutting it. i was sick 3-4 days out of a week.

While Remicade had just been approved by the FDA, my doctor informed that the long term effects were still somewhat unknown. They suspect that Remicade will increase your chance at getting Lymphoma (cancer).

My reasoning for deciding to take the medicine was this: do i want to feel sick most of the time now while im young? or do i want to live a life while im young and face the potential consequences when im older? i chose the latter.

Because of that reasoning, i try to live my life to the fullest as much as i can. Tomorrow is never guaranteed unfortunately, but having Crohn's is.

On another note, i feel that Prednisone is the worst medication you can possbily be on. And while i am no doctor, i encourage those who are on prednisone to talk to your doctor about alternatives, because they are out there.

I just want to share my story in hopes of giving encouragement to others. Know that you are not alone with this. I know it is hard, believe me. You can overcome.

I did.

 

[Guest]

hi & welcome humboldtreign

firstly, well done on having such a fab attitude, and achieving so much, despite having crohns.

i'd like to ask, if i may, why you feel prednisone is the worst med... - i have only been on it short term, but may be facing it long term, so i'd be really interested to hear your experiences.

thanks.

dingbat.

 

[Kev]

Hi Humboldt Reign Welcome to the forum. Welcoming a new member is sort of one of those 'mixed' feelings sensations. sorry to hear you got this disease, but glad you found this site. Think anyone with your positive attitude is a welcome addition. Share some of your thoughts re pred.. It does battle the disease, but it comes at a cost. steriods have a black eye, and rightly so. 'roid' rage, crippling lose of bone density, long term effects on kidneys, gonads, etc.. It isn't a 'nice' med. Think that's why most docs prefer to use it as a short term solution - a stop gap at best till a better regimen or treatment plan evolves. It remains to be seen whether the known long term adverse effects of pred fare better or worse than the long term effects of the other drugs in the IBD fight. But better to go with what you know, Vs what the yet to be discovered may be

OK, enuff soapboxing. nice to see you join up. Membership has it privileges.

 

[HumboldtReign]

prednisone is just an awful drug in my opinion.

it does horrible things to your body, particularly if you stay on it long-term.

i hated tapering off of it.

it worked *somewhat* when i was on it, i never felt as good as i do now when i was taking it. then as soon as i started to taper, or shortly thereafter, i would just get sick again. it didnt do anything for making the disease go into any sort of remission, just calmed it down for the time being. as soon as i stopped, it came right back.

but no, that is not why i even begin to hate prednisone. not in the slightest.

i hate prednisone for its side effects. my face got ridiculously fat. and i could care less about how i physically looked, thats not what bothered me. it was the other kids who bothered me.

imagine a boy being 5'2" weighing in at 110lbs soaking wet entering his freshman year in high school. then within a year you see the same kid, except his face is fat. odd, right? how does this kid, who was so small, suddenly gain 6 lbs of weight in his face? the kids at school had a field day. some kid even came up to me and told me he heard that i had a disease where my face got fat once a year!! :angry-banghead: :duh: :ybatty:

congratu-fucking-lations! you solved the mystery! have a cookie! :voodoo:

i like these smilies by the way. haha.

but seriously, i have to look back at that and laugh. kids are brutal, no doubt. i was really embarassed to tell anyone about my disease, which in retrospect i think could have been a mistake. maybe if i had been more open about it they wouldnt have been so ignorant. nah, who am i kidding, they are highschoolers.....

i think it definitely gets easier with age. people are definitely more understanding, and a lot of the time now people have heard or even know someone else with the disease.

but back on topic, yes, prednisone is horrible. i understand that it is used sometimes as an "in between" drug and not intended for long term use, but i just think the stuff is nasty. unfortunately it seems that when a flare gets bad enough it is a drug that can suppress it, but i think the goal should obviously be to get away from it and get on a more stable long term drug that can offer no flares.

i know everyone's condition varies, and some drugs are more suitable for some people and not so much for others, so i cant say whether it's right or wrong for you. i know its wrong for me and refuse to ever take it again....

 

[Guest]

thanks humbold, and kev, for your responses re prednisone.

even tho my initial diagnosis of crohns was way over 20 years ago, i didnt go through the meds maze then as it had become too bad to be treated with medicine and required surgery... this time around, now that its recurred, i am facing management treatment for the first time, and all these drugs, their good and bad effects, are totally alien to me. thats partly why i am so grateful to have found this forum.. i am learning so much..

i can totally identify with the embarrassing factor of having a bowel condition while still a youngster.. mine kicked off in my teens (altho undiagnosed for many years) and it was something i kept secret from my peers. only my close family knew. there was no way i could have discussed what was happening to me, even with good friends.

things are different this time around.. i am older, less bothered if i get a negative reaction, and like you mention humbold, there are so many people suffering with various forms of IBD these days. i do talk to friends about it now, and have found a lot of support, even from people who dont really understand.

 

[jobengals]

hey Humboldt welcome to the forums. I've been diagnosed for about a year and a half now, and I couldn't agree more about your opinion(s) on prednisone. While it was literally the only drug keeping me away from 15 bathroom trips a day, I absolutely hated the effects it was having on my body. The worst was my fat face, then the awful back-ne I'd get, then my nads shot down a size. Not very healthy for your self-conscious. Of course, add those to all the longer term side effects Kev mentioned and you're not looking at a very comforting remission. Anyway, glad you found the site Humb and thanks for your enthusiasm :smile:

 

[Sojourn]

Welcome. Did you see the motorcycle jump on New Year's Eve? I wished he had made his goal of 360ft but he still broke the record. All the bs coverage I thought sucked. They could have done without a lot of it.

About pred, the first time I took it at diagnosis in 02' I had all the horrible side effects. But the others time I have taken it, it hasn't been as bad for some reason. I've been on it recently for a few months and haven't got the acne. But my face did bloat until I tapered down to 20 from 60mg.

 

[num1habsfan]

It's an awesome attitude you have, that's for sure!! And especially if you have your friends to back you up behind it, it makes it even better. That way when you do have your down moments they can help you see you're still strong.

I know how difficult it is to do the whole university thing. I'm now at the point where I realize it doesnt matter if I fail, or if it takes me longer to graduate than it should. For what i've been going through most people wouldnt be able to handle full-time school while playing a guinea pig in between all of it. All that matters is that I try my hardest for my circumstances. For my 2nd year of school, which was spring 2007, in the 2nd semester out of 4 months I missed 2 1/2 months of school being of physical tests and seeing specialists, and I was still able to pass. I even had one teacher last semester remind me: Health must always come first. And its a good point. Once a person manages to get control of it, they don't let it take over again. Unfortunately mine is still out of control so its harder than it should be.

But feeling like I'm dying everyday doesnt stop me from getting out of bed and trying to get my educations. Accounting, and then Computer System Technology, are no easy tasks but I'm determined to complete both. Its nice to see someone else out there with the kind of strength I've maintained too

~ Lisa ~