Having a colectomy as a Crohn's patient is absolutely crap

Urgh, you don't know how lucky you are to have UC and be done with IBD forever.

Sorry to anyone who takes offense, it's how I feel. Sick of worrying if every stomach pain is Crohn's or not. My blood inflammatory markers are normal, so I'm reluctant to go hassling my hospital for tests when they probably won't show anything conclusive.

On top of that, the bag just... urgh, well you know my feelings about having to wear bags for the rest of my life.

Good god, it's a tragic state of affairs when I'm envious of those who got UC instead of Crohn's. If I was gonna get an IBD, why for the love of god couldn't it have been UC. Obviously, the ideal would be to not have an IBD at all, I quite appreciate that, but having got one, I wish it had been UC instead of freaking Crohn's colitis.

#selfpitypartforone #nooneelseinvited

I don't blame you- I'd be really pissed if my "disease" wasn't gone, after the whole surgery ordeal! Having UC made it a fairly easy choice- having surgery, UC is gone forever. Crohns, it's like "Oh, maybe you'll feel better for a while!". Not much there to help you get thru the at night! I tend to be a bit hyper about any aches or pains anyway, so I can only imagine that you're hyper-vigilant (to the point of madness) about everything. But... at least your colon won't be the trouble spot! I don't know what to say, except... well, you're cool! I have to go for more bloodwork this week, then another hematologist appt.... hoping to be done with all that nonsense, as I'm no longer losing blood daily, & my iron levels seem to be holding up ok. But I get your gist- sick of it all!

NCOT, does it help at all to keep in mind that those of us who have "Crohn's Colitis" have an 80% or greater chance of a non-recurrence with our surgeries.

I know that is not 100%, but it is pretty darn good odds and I think you were one who was actually given higher than 80%, correct?

Hugs and good vibes for you, NOCT! I have no doubt that it is totally different going through such a major surgery, living with an ostomy, and still knowing that more bowel problems could creep up at any time. I know it's not the same, and doesn't make you feel better, but having surgery doesn't "cure" UC. Yes, the big bathroom problems are gone, and many people have no other signs of the illness for the rest of their lives...but that's not the case for everyone. UC has many extra intestinal manifestations....mouth ulcers, eye/iris inflammation, various forms of arthritis, skin inflammation/ulcerations, deep vein thrombosis, an autoimmune form of anemia, bile duct inflammation, and some others. And of course, there is the commonality of autoimmune disorders....once a person has one, they are likely to get others. So yes....having a proctocolectomy cured me of crapping my pants, uncontrollable diarreaha and all of the other typical UC misery...but, I still have multiple painful mouth ulcers on any given day, random joint pains, the constant fear that every weird feeling in my legs could be DVT...that a day of blurry vision means that UC has manifested itself there, and countless other worries.

I guess the trick for all of us with a chronic disease is to do as much as we can to not let it control our lives. No, it can't be forgotten, but we can make a concious effort to enjoy the good days while we have them, and not worry about things we can not control that may never come to pass. I have to remind myself of that often.

NCOT -You just have to live your life and not worry about what you can't control. A year ago I had never heard of Crohn's, UC, ostomies, or any of the fun filled things that now occupy my life. I'm 22 years old, have had my colon and rectum removed separately over the past year and now have a permanent ileostomy. Did I ever expect to live this type of life, let alone at such a young age? Of course not. But it doesn't mean that I'm going to sit on my ass everyday and mope around about what is out of my control. These are the cards that we have been dealt, and I'll be dammed if I'm not going to keep enjoying the rest of my life. The way I see it, why fear something that you don't even fully understand? If my Crohn's decides to come back somewhere else in my body I'm more or less ******. But since all my Dr's still have relatively no clue as to whether or not that will happen, my choice is to live a happy life while I still have a healthy body. Take each day as it comes and never take your health for granted. And of course there will be rough days and times of worry, but that's what these forums are for right?

Eva Lou said...
I don't blame you- I'd be really pissed if my "disease" wasn't gone, after the whole surgery ordeal! Having UC made it a fairly easy choice- having surgery, UC is gone forever.

Eva,

I don't know if it is an easy choice to make if you have UC, it took both you and I a long time before we had our surgeries. Looking back I should have made that decision years ago but I didn't, I honestly don't know why I waited so long and suffered. I wish that us "lucky people, as referenced in this thread"(which I personally wouldn't consider us) would opt for surgery sooner because surgery was perceived as a good thing which would be better than it is currently perceived, right now by most UC'ers it is preceived as a failure/negative thing.

I took a break from the internet a few days, folks. I'm back now. Yay... ¬_¬

@ByeByeUC - Sorry about your mum. Arthritis is a horrible condition; hope she gets better soon.

@Eva - Yeah, I'm sick of it all. Haven't changed my mind at all since a few days ago to be honest. When I'm away from the internet, I do think about it a lot less (usually 'cos I'm deep into a videogame >_>), but when I come back to HW, I'm just reminded of the suckiness all over again. I must have been a masochist in a previous life, I swear.

@Smd79 - Yeah, nothing's gonna change. I was just born at the wrong time; 50 years later, and there's gonna be so many more drugs than there are now. Even if I had got Crohn's today, I'd be at an advantage compared to 14 years ago.

@CrohnieCJ - I had small bowel disease in the terminal ileum, so my chances of recurrence are heavily increased. I'm also not quite sure I believe that 80% stat either; I think it refers to the people who have not had any follow-up surgery since their ileostomy. Well, that's one definition of remission, but it's also a pretty narrow one (and also only covers 10-20 years and not a lifespan).

I'm too tired to write anymore... Hugs and thanks to the rest of you >_>.

@not creative - Yeah, my rectum was partly spared, but the rest of my colon was severely affected. Permanent ostomies of any kind are rare in Crohn's; temporary ostomies are far more common. Did you have a temporary ostomy first? If not, then I'm not sure why your surgeon didn't try that first, but that's a question for them, not me.

Now I've really, really gotta get going. Night guys... <_<.