I didn't have UC, I have FAP.....which is different. However, if I had symptoms such as bloody "D" all the time and a painful gut, among others, I wouldn't be waiting too terribly long to have surgery. That's just me.

Now in a quick version........from Diagnosis of FAP (with a polyp riddled colon revealed in colonoscopy) to surgery was a mere 13 days for me. I didn't screw around. I did research (quickly) and got the best surgeon I could find that had done Total Colectomny/J Pouch surgery and was fairly young, but, experienced. I went with it.........and..........I am so glad I didn't wait, looking the whole time down the barrel of that gun any longer than I had to. I wasn't going to explore this or that, I wanted that polyp ridden colon OUT of me ASAP.

Upon excision of my colon, we found cancer......I went thru Chemo, etc... and made it just fine.

I have MY life back that I didn't realize I was missing. I didn't realize how sick I was despite not having a clue what was really going on.

I LOVE MY J POUCH.

Over 90% success rate for ALL J Pouchers (I think that was the rate) versus living with knowing that at any moment my colon could turn? Or whatever other type of possible UC scenario.....I'll take my 90% chances.

That's just me though. You'll know when it is "time". Though from my perspective, I don't think I'd let it linger too terribly long.

Good luck.

I put off the J-Pouch and just monitored it all the time. My doc warned me but I did not listen. Then suddenly I had colon cancer. Looks like I am cured now but I had to do an awful lot of worrying I would not have had if I would have had the colon out when the UC got worse (wan never that bad or painful, never bled) if you have UC more than 10 years seems you are bound for CC so get it done!

You see all kinds of awfyuyl problems here because this is where folks with propblems come but honestly, I didn't think it was all that bad. I was doped up and so didn't feel pain. I had the "temp" for only a month and I was back in the gym (and I am 65!) in less than 60 days from my first operation. Had I known it was so easy I would have done it much earlier.

From what you are describing I don't think I was too much worse off than you. I just had to go out to work on my bad days. I work with the public so I had to do the bathroom thing then hurry up and go back to work.
BTW - I moved to Indy 4 years ago...before that I was born and lived in L.A. for 40 years(San Fernando Valley). There are quite a few people here from L.A.
Good Luck
David

This message has been edited. Last edited by: Indy_Dave,

Hey, everyone. Just wanted to give you all an update. I went ahead and scheduled the surgery - my appointment is July 8 at Cedars Sinai with Dr. Fleshner. I've seen him a couple of times now and he seems like a good/competent guy and plus I live literally across the street from Cedars so it's going to have a huge leg up on the competition based on that alone.

My decision was driven by a couple of factors. First, this current episode began rearing its head as early as last August. Since late last October, it's been as bad as it's ever been with no signs of letting up. So we're getting on almost a year of active disease with zero response to any meds that have been tried. I also did the SCD for about 6 weeks and some Chinese herbs/acupuncture for about a month, all to no avail.

There aren't a lot of treatment options left. The Mayo people thought I might respond to higher doses of injectable steroids, and I also can easily enter a clinical trial for abatacept. But I find myself asking - what's the likelihood that either of these things is going to provide me with a prolonged benefit? It seems like it's much more common that people become more and more refractory as time goes on, and that's certainly been the case so far for me.

So basically, figure I've got maybe a 25% chance (and this may be optimistic, honestly) of achieving a prolonged (a year?) remission if I continue to plug away with the meds. And even then, there's a strong likelihood that things are just going to flare up all over again in the not-very-distant future and I'll be faced with all of this all over again.

With surgery, I'd be looking at 80-85% likelihood of being more or less "cured" and up to 95% chance of being at least somewhat better off than I am right now. Sure, it's less than ideal in many ways and I'm not particularly thrilled about it, but when you look at it this way the decision becomes considerably easier.

I don't think I have any delusions about the surgery and I really am fearful of complications but I need to start getting on with my life. Accepting that I am unable to have anything resembling a normal life as long as I'm stuck with this colon appears to be step 1 in this process.

So...I am now open to suggestions/advice regarding preparation for the surgery. Feel free to post away. Thanks again everyone for your input.

It took me about six months of unrelenting, refractory colitis, waiting for a remission (after 23 years of mostly remission). The fact that your disease is becoming more frequently relapsing and more resistant to medical management is very telling.

Still, it is also important to have your head completely wrapped around this thing. If you were to suffer complications, you would be forever second guessing your decision when you had other options to explore. Surgical success is a greater probability when you are completely prepared and accepting of the surgery, AND when you have faith in its ability to improve your quality of life. Choose a surgeon who you have faith in and makes you feel good about your choice. It is good to have your GI on board too.

It will NOT restore you to your pre-UC function, so no point in comparing. There is no option available that will do that, even if you do get into remission. Regardless, you need to try to get this C. diff under control before surgery. Most often, vancomycin does the trick.

Jan

Insect-man,

Sounds to me like you have a good plan. Jan gave you another reality check, but I'm pretty confident after seeing your responses you have about as clear a picture of j-pouch life as you can have prior to surgery. She did make a very good point about clearing up the C-diff first, though. That is not a complication you want to deal with post-op.

I commend your investigation and your willingness to hear what others are telling you. Mark's story probably helped too - it would have helped me. "Oh - if only I had done surgery sooner..."

Best of luck with things. July 8th isn't that far off. No real advice on pre-surgery prep, other than to make sure and prep like you're told - including using the anti-bacterial wash prior to surgery.

Steve

quote:

How long did you wait before pulling the trigger ?

My signature spells out the time frame. But I was sic since the age of 23 now that I look back. From 1995 to 2006 I was never in remission sort of a low flare most of the time with periods of bad flare lasting anywhere from 2mths to 8mths at a time. I really did not want to have my colon removed until April of 2006 when the UC flared big time even though I was on Imuran.

At that point getting so sic again an looking at going back on Prednisone that was enough for me. Made a Surgeon appt in April 2006 then surgery in May 2006. Although my surgeries where very tough to go through .. now at almost 4mths post take-down I feel so dam good that I wished I'd made the decision earlier. I wouldn't have had to go through so much sic feeling for so long if I did. But everything works out in the end I believe so my surgeries were at the right time for me.

I did not wait long. First symptoms occurred in Fall 2005. Went through the drug regimens. The only one that was effective was prednisone, which is a drug with some nasty side effects. It came down to living with UC and prednisone-short term, or colonectomy.

This I had Dec. 2006. So a little over a year.

Wow, it's really nice to see some positive stories. I'm considering surgery and a lot of the posts on here scare me, even though I know the people who post the most are the ones having problems.

Hopefully I'll be able to schedule at appt. at Cleveland Clinic soon.

The issue I have with the surgery is being tied to the hospitals and doctors and my experience with other surgery has been frustrating at times. I find it hard to accept that there are not alternative means to cure the colon without removing it totally. I have some symptoms that I'm fearful of becoming worse, but I'm not good about getting myself to a doctor if complications arise or dealing with the waiting rooms, insurance, hassles etc. However, I've had cosmetic surgery that I was VERY displeased with and the medical follow up EMOTIONALLY is more of a problem and embarrassing. i've already found out that surgery does not always result in EXPECTED results. I've been suicidal and despondent over the surgery I had , but never with sickness. I want to try any and all alternative means to healing before I get the surgery. Is it possible that the prednisone that is always prescribed for UC, could actually be making the symptoms worse....then you're off to surgery?? I'm NOT sure about this , but I noticed when on prednisone for something else, I did not feel well at all. Try all the antibiotics and opiates before the surgery, then if no results are attained, I guess got ahead and do it. I think the peace of mind is when you exhaust ALL options and naturopathic remedies and yoga, rest etc first.

My responses are based on my experience:

The issue I have with the surgery is being tied to the hospitals and doctors

I have never been less tied to doctors and hospitals since having surgery. Since having surgery for UC I see my surgeon annually for a scope/biopsy and I see my internist for a physical.


I find it hard to accept that there are not alternative means to cure the colon without removing it totally.

I agreed with you 8 years ago prior to my surgery so I tried every alternative means to gain remission. It wasn't until I exhasuted those therapies and was convinced I didn't have any other options (other than prednisone) that I chose sugery.
I have some symptoms that I'm fearful of becoming worse, but I'm not good about getting myself to a doctor if complications arise or dealing with the waiting rooms, insurance, hassles etc.

You have to be your body's advocate. If you need help you need to get help. Not seeking medical attention when needed will usually make things worse.

i've already found out that surgery does not always result in EXPECTED results.

True. But surgery can give you a better quality of life over illness.

Is it possible that the prednisone that is always prescribed for UC, could actually be making the symptoms worse....then you're off to surgery??

Prednisone can stop working and prednisone has some unpleasant side effects while on it and while tapering and can have long term consequences if taken for more than a few months.

Try all the antibiotics and opiates before the surgery, then if no results are attained, I guess got ahead and do it. I think the peace of mind is when you exhaust ALL options and naturopathic remedies and yoga, rest etc first.

Agreed but I don't think antibiotics and opiates are first line treatments for UC. I did the yoga, being a vegetarian, not being a vegetarian, SCD diet, pranic healing, and a host of supplements. It didn't work for me but I am glad I tried it.

Sue