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Voluntary Surgery...

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Crohn's Disease
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Posted 9/11/2007 3:29 PM (GMT 0)
Haven't been here in a good bit...does anyone know if a dr would let you volunteer for surgery or do you have to have like an obstruction to get the goods? I swear to god I'm minutes from checking out some do it yourself surgery kits...I'm so sick of this crap. I felt so great, I was doing awesome for the first time in two years...then I get in a car accident..instaflare. I couldn't even walk between the back strain and the flare. It was so bad that I was literally crying trying to walk through the grocery store carrying a bag of cat food and the bag boy offered to carry it to my car with a genuine look of concern...I'm 23!!!!!! so my dr puts me on 2 weeks of prednisone...which turns into months...which turns me into a fat pimply gross cow...im so excited to be off of it and now i feel like crap but i dont want to tell anyone cause i dont want to be back on it. so instead ill just stay high on my pain meds which i also hate. what a fantastic life of a 23 year old. i love that im always worried about losiing my job cause i spend more time at the hospital/dr office than i do at work. i love that i can go to the hospital for a fever and end up being admitted for a week for my CD. Ok this wasn't supposed to be a rant...its been awhile since I've had someone who gets it >.< Anyway back to the point....

Can you get surgery when you feel like crap or do you have to be near death? I'll stop my meds if I have to lol

Posted 9/11/2007 3:41 PM (GMT 0)
I would print this out and show it to your doctor to start an honest discussion about your quality of life and the other options. have you tired humira or remicade? are you having obstructive symptoms? fistual problems? if you aren't having those symptoms or haven't tried the biologics, surgery may not be indicated. however, if you have alot of scar tissue, biologics may be held in reserve since they can't help that. either way, you should have a better discussion with your doc and maybe thing about seeing a psychiatrist to deal with the emotional aspects (and remember that pred will make you nuts.

hang in there. we know how you feel... and it ain't fun.
Posted 9/11/2007 4:29 PM (GMT 0)
Hi MissCris!I am sorry to hear that you are feeling bad again.I would have to agree w/Frank about discussing your options w/your doctor.Having a major surgery at this point may not be the best option for your personal treatment.Good luck & take care.
Posted 9/11/2007 8:14 PM (GMT 0)
I'm not going to lie, I don't want to try any more meds right now. I'm tired of being a walking chemical factory too... I know I'm being a whiney baby and there are people that have it worse (trust me I know) but I'd like to eat food for breakfast instead of filling up on the 20 pills I take. I'd like my body to function on its own instead of pumping it full of chemicals that all interact with eachother and will eventually do god knows what to me. To me...cutting out some nasty scarred up chunk of intestines isn't so bad if it means a chance at going into remission for possibly 20 years...hell I'll take 5. I know its like trying to take the easy way out...I'm ok with that. (I swear I'm not a negative person lol...I'm normally pretty upbeat..just been pretty frustrated that I'm feeling crappy since stopping the pred. again)

Posted 9/11/2007 8:45 PM (GMT 0)
How would you like 21 days? That's how long I got before having to have IV steroids started again for crohn's symptoms after my last resection.

I understand the misery you are in and your frustration with medicines. It can sometimes distort your thinking, however. In my case, I had to have surgery as my bowel had occluded.

I cannot imagine how devastated i would have been if I had had "voluntary" surgery that wasn't medically necessary and then ended up with inflammation again so soon.

This is not to say that surgery isn't an appropriate option for you. It might be. The point is that you can't reach that decision through talking on this board. It really is a decision for you and your healthcare team. Please consider Frank's advice. He's bang on in suggesting that it is time for you to have a candid discussion with your health care team. Quality of life is a factor that should be taken into consideration in making a decision about whether to opt for more medical management or a surgical option. You are not a whiner. You are suffering the daily effects of living with a chronic illness. It is really tough and sometimes there are no perfect solutions.
Posted 9/11/2007 11:47 PM (GMT 0)
nice whine.....did it feel good, sometimes there is nothing better than a constant stream of complaints...i made one this morning and i have been fine since.....

i have felt the way you describe before, different symptoms, maybe, but i get what you mean....

then one day i was at the doctor and I said, maybe it's time...and he said, "sure, let's have you talk to the the surgeon", and voila....here I am with an ileostomy now (that's a pouch to go in)....it is supposed to be temporary, but now it seems likely it will be permanent.

I think for me it was the right choice, but you gotta go be real with your doctor and see what he thinks.

Let us know how things go.

Till then, keep ur' head up, you are right, you are too young too be so tired of being sick, keep fighting the fight, there is a path to relieve, you just need to find it
Posted 9/12/2007 1:50 PM (GMT 0)
Sorry to hear that you feel so bad. I felt so misarable a year ago and than I had to have a surgery. I am 35, have a beautyfull 5 year old son, however I was on all possible medications that did not helped me. was on prednison for over a year and that I think made me more sick than CD. So it was not as you said voluntery surgery but lets say it was planned. They took arround 20cm of my small intestine including terminal ileum, when they opened they found 2 fistulas as well. Since that time I feel very good, I will not say without symptomps but compare to my life before surgery this is a first prize. I work full time, I take care about my son. I do not want to tell you do it or not but I think that you have to explore all possibilities before decide to have a surgery, all of us are different so you never know how long after surgery you will be in remission.
Hope you will find treatment that will help you

Maja
Posted 9/12/2007 7:30 PM (GMT 0)
MissCris,
I totally know how you feel. CD can be very frustrating at times. And I know EXACTLY how you feel about all this medication. I HATE medication. Ever since I can remember, I used to HATE taking any form of medication...even Tylonol! I just don't like the idea of it. It's not natural. I have only been on Entocort and Cipro. So I can't relate to Pres. However, I've had sooo many complications/side effects w/Entocort. I decided to go medicine-free as of, yesterday. My doctor wants me on 6MP right now, but I don't want to. Too much to deal w/. Anyhow, I've decided to take the more natural route. And even though my doctor says it wont work...I'm going to try it anyway. I've been reading about The Maker's Diet and I've heard some good results from it. Maybe you should consider something like that.
I myself have also thought of getting voluntary surgery to just get it all over with. I didn't even know if it was an option, but I've always thought of it in the back of my mind. As others have written, it's a totally risk because you don't know how long your remission will last. I think we just have to accept CD is chronic. And make the best we can out of it!
I think most of all, you should try a really good diet if you haven't already.
We're all here for you.
<3
m.
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