Surgery

Nicole, most people with UC at any given time are in remission and living normal lives. It's just that when people are in flare and struggling, they're much more likely to come here for support and information. So you do get a skewed view of things.

As to why we don't just all have surgery, I'm sure there are lots of reasons. Surgery is final and can't be undone, so we tend to chase remission and have surgery when we just get sick of chasing. The more we're in remission, the less we think about surgery. There really aren't any "useless" organs in our bodies, even the tonsils and appendix have a function. So removing the colon can be fraught with its own problems, even though it does cure the UC by removing the colon.

I've had UC for about seven years now, and have worked at a highly responsible professional job throughout. Sometimes it was hard, but it was something I wasn't willing to give up. I assure you, if I hadn't been able to continue working I'd have had surgery.

Everyone's disease course is different, everyone's perception of how they feel is different, everyone has different priorities and needs in their life. Most of us are able to meet those most of the time. For the past two years, I've been able to do whatever I want and haven't had to think much about the UC. So don't be discouraged or depressed; if what you're reading here is overwhelming for you, you can always take a break and come back later. Remember that most people come here when they're at their worst.

well i have to say that i don't understand why people dont' just have surgery either, but i didn't have it for along time either, i don't know why, i just didn't want to.
But after being sick for 8 years, and missing alot of my son's life, and losing jobs and just basically being miserable, i decided something was going to change! i didn't want to spend anymore time trying new meds, because even when i was in remission, i was always waiting for the other shoe to drop, always waiting for the meds to quit working, or worrying i would have to take an antibioitc, or get a stomach flu, which would start me up all over again. And so i decided surgery was the best thing for me, and it is so great, i can do whatever, whenever. I have had my ileo for over a year now, and i still find little things everyday that make me glad i did it. The other day, it was being able to mow, today it was having plans with friends and knowing i wouldnt' have to miss them because my stomach wasn't doing good. Somedays it's just being glad i can eat whenever i want.
It is permanent and a really hard decision, i looked at it this way I KNEW i hated my life with UC i KNEW i was miserable, and i realized i MIGHT be miserable with an ileo, so i chose to take the chance, after lots and lots of research, and it was worth it.

I have had UC for 6 years and am flaring at the moment did get better but now tapering off steroids and things seem to be getting worse ( those 2 days I experienced with a fully formed BM and no pain were bliss ) trouble is it only lasted for 2 days. My brother had UC although was much worse than me and didn't really get much of a break between flares and he had surgery 10 years ago (before I was diagnosed), I look at him now and he is in fine health playing sports again doing all the normal things and can't remember what it was like to be ill and then I look at my life I never feel like  I can plan ahead, sometimes I wish they would just rip my colon out as it only seems to cause problems for me. I know it is a last resort but something that as the years go by sounds better and better to me. I have just started azathioprine so hopefully I will feel the benefit of that soon.

My family keeps asking the same question. Answer: I'm not ready.

I've had UC ten years and had a fantastic 5 yr remission. I know i can get there again. But after that if I flare I will probably have surgery. Maybe.

My GI has yet to even mention surgery even though i have exhausted most meds. My husband and I do discuss it often.

For me, I want to wait until I am done having children (hopefully). I have learned that with a j-pouch there is a higher chance of rupture while pregnant. Jpouch also means csection.

Also I am a bit of a freak about needles, knives, ect. I hate having my skin punctured. The idea of having a stoma even for a little while still freaks me out. I can't handle a papercut let alone a hole in my side. Once I can wrap my head around that I will consdier surgery. If it comes to HUmira and having to give myself injections I would probably choose surgery. I am that big a freak about needles. There is no way I would inject myself, weekly/biweekly or even monthly. I would flare instead. I can handle the remicade needle every eight weeks (though i have been known to hyperventilate).

Surgery is always at the back of my mind but its a big life changing decision.

GISGuy31 I would have to agree with you.  Even though surgery is permanent and not reversible it is not any worse in my eyes then the other options.  With everyone's different state of this disease surgery may not be a proper option because they are able to achieve remission or their symptoms may not be as severe as others of us. When I was diagnosed five years ago the doctor did mention surgery but just as he was explaining all of the different types of treatments in general.  After that point none of the many GIs I had seen would bring it up and would dismiss that I wouldn't want it because I was too young or that since it was permanent it needed to be a last resort.  But what they fail to point out is that since the medicines only treat the disease the disease is permanent and like GISGuy31 says continues to do damage even if you are in remission. I am one of the unfortunate people who have never experienced a true remission in five years.  I may get one or two days off without numerous BMs but by the next day it is back in full swing, D and B.  It has progressed over the last five years to a point where I can no longer work.  It is impossible to find an employer that is willing to put me on payroll but allow me to stay at home for the first six hours of work.  I haven't been to one of my children's school events in so long that it is pathetic. Now the next thing I noticed is that the risk with the medical treatment is something the doctors don't like to discuss.  If they are willing to point out the permanent change with surgery then why are they not willing to let you know the risk with all of the medicines.  One they fail to point out that is associated with this disease is sepsis.  Because of the very nature of UC sepsis is more common.  In my case when the infection started I was on prednisone that had shut my adrenal glands down so my adrenal glands failed to step up and fight the infection.  The infection was more then likely caused by my UC.  Now the problem I had was that all of my systems went into shut down.  I was life-flighted, intubated and knocked out for five days (total of 11 days in hospital then returned the next week with complications).  The doctors only gave me a 10% chance of making it and because of the medicines used to try and increase my blood pressure I have an IV infiltration on my left arm that caused necrosis.  I have to spend time at a wound doctor trying to get the underlying tissue to regenerate and will probably have to have a skin graft at a minimum to fix it.  My hospital bills are approaching $250,000 just for this incident not to mention all the stress that my wife, four children and the rest of my family have gone through. There are many other problems that a UC sufferer can have also but most people will only find it out through their own research not the GI doctor.  I realize that some people, if given the option, would choose the surgery since it is the only true "cure" without factoring in the complications that surgery can bring.  It may not be right for everyone but it should be out there to weigh the risk against the drug risk.  I have spent some time now researching people who have opted for surgery and have found only one person who seems to not like the choice.  The situation seems to be that of wanting to "cure" it without understanding the consequences.  The person later found out they were misdiagnosed and had Crohn's not UC so still has the symptoms.  It looked to me like a classic case of rushing into a solution.  It should be thought out and milled over.  I don't understand why we don't use the same approach with the medicines.  When a GI says you need to start using a different med does anyone say to the doctor, "I would like a second opinion" or "I want time to research it"?  I would guess no one does, we either find a new GI if we don't like it or more often we just take the meds on blind faith. For me surgery seems to be the only solution now, but may not be for many others.  I have spent many years, to include prior to diagnosis making changes in my schedule to put up with this disease.  No medicines ever worked for me, my body became steroid dependant, still am currently, the immune suppressors make me violently sick and with all of the attempts the only thing I can temporarily stop is the bleeding but that is temporary (two weeks tops).  I just wish that surgery would have been considered earlier so I would have had time to weigh all the risks of the different treatments.   Maybe I would have been able to get it done and back to work without all of the drama that my family has been up against since the first of the year.  

Nicole, would you mind editing your signature down to ten lines or less? That's the forum limit, and blank lines count as a line also. Thanks!

Surgery is definitely an individual decision. I've encountered people who went straight to surgery, and others who hung onto their colons until they were completly disabled. Most of us are somewhere in between. It's all good, because only you can know what's right for you. Personally, I support each person's right to use whatever treatment they feel is best for them.

If you feel you're ready to consider surgery, I'd suggest a consultation with a good colo-rectal surgeon. There is an ostomy board on this forum where you can learn more about ileostomies, and here is a link to more information about the J-pouch, the most common surgery:

http://www.j-pouch.org/

It's important to know all of your options, I think.