What if I don't do anything?

I've been pondering this as well. Obviously, it's best to get treatment as soon as possible, and the risks of untreated inflammation does seem to point to future complications, with colon cancer being a major one.

I've actually been flaring since 2009 with intermittent periods of remission from prednisone, so it's probably imuran or surgery for me. I've failed other treatments due to my stupidity - I went off mesalamines when they kept me in remission, so now I'm paying the ultimate price.

I was actually one of the lucky ones who responded to mesalamines, and I took that for granted. Other people are not so lucky and have to suffer.

Well, you don't ever have to accept medical treatment. Even if you actually had colon cancer right now you could, if you really wanted, choose to forego treatment and keep your colon.

If the symptoms that result from your inflammation aren't impacting your quality of life to the point that you want surgery, you don't necessarily have to get it. You should understand that being in a constant uncontrolled state of inflammation will most likely eventually lead to your developing colon cancer. If you're bleeding, you will probably be somewhat anemic, which can have other health consequences. You can choose to keep your colon and live with the chronic inflammation and do frequent scopes to look for dysplasia, polyps, etc, but there's no guarantee that you'll find them in time for colectomy to be a sufficient treatment.

But as gary said, all of these decisions are fully up to you in the end.

"Everything I read about surgery does not make it seem like a vast improvement."

improvement over what ?

what are your symptoms ?

i think you need to read more - lives have been transformed by surgery -

i've been at it for 10 years - many on this forum twice that long -

I have not stopped bleeding since I started bleeding in April 2011. I had about 4 - 6 weeks where I was just barely bleeding before Thanksgiving last year. Probably because of four months of Prednisone.

I just bled through 60mg of Prednisone.

Most of this is 'new' to me, in that I've only been diagnosed for about nine months. I blew through a lot of meds before I knew what I had. I know I'm missing the closure of time. I wonder if the surgery decision comes like, 'argh, just take the bleeping thing out already!'

bleeding...with how many bms per day?

Quality of life is subjective. It's obviously a decision you're willing to ponder.

I'd never want to go back to how I was before diagnosis....

q

Is this the first time you've been on rectal meds?

You might eventually want to throw in mesalamine enemas to the mix eventually.

Hope you feel better soon...

q

so T , docs gave you drugs before they gave you a dx -

sounds like you need a new doc, not new drugs -

New doc might be in order. My original doc didn't start me on mesalamine until she had a look at my colon to make the diagnosis.

i was in a flareup for 4 1/2 years before i got close to remission.  my biggest concern was that in a constant state of inflammation  i was at risk for colon ca. 

i tried TONS of things, alternative stuff, diet mod, homemade kefir, kefir enemas, various probiotics, pred, entocourt etc..

finally a combo of lialda, rowasa and imuran seemed to help.  i was having 4-6 bms a day with blood and urgency before i added the imuran. imuran after 6+ monthes got me as close to remission as ive been in almost 5 yrs.... i belive that its a combo of things. like if your dr prescribes pred, dont just do pred, do it all, the oral mesalamine and especially the rectal med...

how long have you been on imuran?

also, agree with the suggestion to try rowasa rectal meds.

give everything time to work.

one member here, old mike has been in a flareup for  30 years! (someone correct me if thats wrong)

i_love_coffee, how did you know you hit remission after flaring for 4 years? Did you start gaining weight and such?

I just know Imuran takes 6-9 months until its effective. Falling hairs are common side effects among immnosuppressors. For enemas it take 8 weeks until your gut heals if the inflammations are bad and your nutrition needs to be good for the inflamed skin to heal. Your doc should have kept Imuran on you for longer to see if its effective. If you needed faster healing time, then the doc should put you on faster acting immunosuppressor. I am on immnosuppressor and I am just worried about secondary infections and lymphoma. Remicade I know its the last resort just before surgery. For this disease I know its important to see an experienced GI who specializes in IBD preferably in university hospital, because I found city hospitals and clinics doctors sometimes arent experienced and the way they adjust meds and right judgement calls require lots of experience, but switching doctors too often is also not that good.

Like others suggested here its not wise to let just doctors decide the treatment options for this disease, because the fact is, doctors dont know what they are doing or how this disease happens, but they only know how to prescribe medicine hoping that some meds can keep your symptoms at bay.

I saw a news the other day in where I live, they are saying there is immunology advancement and there are ways now for people who got organ transplants, not having have to take immunosuppressors to keep their donated organs, avoiding infections and liver diseases. They can manupulate the way our immune system understands our own and also external organs by training our immune system to understands what to be attacked and what not to be attacked, so that it does not attack the organ donated. The scientists were saying the technology is available in 5 yrs for people who got organ transplants in the main stream, at the same time they are also looking into increasing the immune system for cancer, and after modifying this technology so that it can work for auto-immune disease like UC.

Gosh I hate this UC. When I read your post I'm flooded with all of my lousy memories.

Well the good news is you can last a LONG time in a flare and still recover. I mean..look at me. Over the years I'd question surgery and even got really close to it.

I made huge drastic and difficult dietary changes over the years after trying everything possible known to the world of UC sufferers. Something worked (in the diet) and I may never know what it was, but I suspect some kind of preservative out there is evil!!!

Anyway, I've been there so I can really empathize and even sympathize. Hang in there and be patient. Things can turn around.

John