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Surgery is a cure for UC. So, if you want to be done with the medicines, the uncertainty, and the frequent bloody stools and spasms, then you're ready. You will feel so much better very soon after. I felt better the next day!

You don't realize how much UC is sapping your body from energy until it's gone. I know it's a scary decision, but it's so worth it to get your life and your health back.

Wishing you all the best!
Cece

Yes, proctocolectomy is colon and rectum (colon only is colectomy)

Surgery is a very personal decision; only you can decide that you want to do it and are ready to do it.

I waited until things were so horrible that there really weren't other options. In hindsight, I would have felt better if I'd have had the surgery earlier (when I asked my gi if he thought it was a good decision, he said, "yes, two years ago it was a good decision."). But, I think if I'd have had the surgery earlier, I would have had more doubts than I have now, because I was just DONE, very clear that I had tried as many things as I wanted to try, and if I missed something that would have worked, so be it, I couldn't wait any longer.

One thing I will say, echoing Cece, is that when you've been sick for a long time, you kind of get used to it and forget what it is to feel good. It is amazing how much better you can feel w/out the diseased colon.

I had wanted to try the fecal transplant, but I just got too sick, my doc said it was dangerous (and he was very much in favor of it before that). I tried all kinds of diet stuff that helped some, but not enough. I never tried LDN.

One thing that helped me was seeing a picture of my colon after surgery. Parts of it were shrunken and scarred, and it was hard to believe that it could have gotten better w/a diet change.

I never had a lot of pain with mine either .... blood and urgency were my gi symptoms. Then fatigue and crazy skin things....

Feel free to ask more questions. It's a hard decision, and for me, it was comforting beforehand to see how well so many people here were doing.

     My symptoms were exactly like yours.  I have a high pain tolerance, so, I didn't feel much pain.  More like cramping.  However, the one time I did have a lot of pain, radiating down into my legs, was when I was hospitalized with "moderate" proctitis back in 2008.  It lasted a good two months.  My main problems were urgency and bleeding. 

     I read where some people go in upwards of 20 times per day!!!  I went about seven to ten times and always in the mornings.  However, the urgency was severe.  I had port a pots in just about every room in my house.

     I have a friend who has UC and is doing very well on the VSL#3.  Her doctor took her off a ten year stint of 6MP.  I have no idea why he did that because it kept her in remission.  She started to flare soon after he stopped the medication.

     My GI doctor did not have anything good to say about fecal transplantation.  He never recommended LDN either.  Maybe, down the road, if I didn't decide on surgery, he would recommend it.  But, the 6MP, Remicade and Humira all failed me, so I said "enough already."

I never had pain or cramping with UC. I had diarrhea, vomiting, fevers, and most importantly was prednisone dependent. If you can only remain in remission while taking prednisone, surgery is for you. For me I became much more afraid of the long term side effects of pred than I did of surgery. That's when I tossed in the towel. My surgery was 11 years ago and I have never regretted it. Count me as one who woke up after surgery and could IMMEDIATELY tell that I no longer had UC. I cried; it was wonderful. I've been med-free and healthy ever since.

Sue

It has been said before, but I agree with everyone that it is a very personal decision. I didn't have a choice...I had to have emergency surgery, but if I had been told earlier that I would feel better the next day, I wouldn't have let things get so out of control. Yes, there is an adjustment period, but I find that my life is so much better now. I don't have to worry about simple things like going to the mall or having to run at the drop of a hat to the bathroom. Also, my resting heart rate was always 110 due to the inflammation, now it is 75. The inflammation was wreaking havoc on other systems besides my digestive one. Whatever you decide, weigh the pros and cons. But the surgery is sooo worth it.

Allswell,

It's not really about 'how bad your colon looks' it's about your quality of life. My UC was limited to my rectum and covered the space about the size of a quarter. That tiny amount of illness made my life unbearable and frustrated the heck out of my GI. I've never regretted surgery to have my quality of life back.

Sue

One question I asked myself was, "What if they cured Crohn's a year after the surgery? How would I feel then." I actually thought about that for years before I decided, e.g. what if I have the last colectomy and it turns out I didn't really need it?

When I was ready, I just answered that I would be thrilled if Crohn's was cured in a year, but I couldn't wait that long (and only two months to go, sigh, don't think it's happening....and I certainly didn't have the last colectomy either). I somehow started getting better right before surgery -- pred worked better than it had in months, I was even having formed stool which I hadn't had in a long time.... others have reported similar upticks.... I think it was the relief of having made the decision and of not being at work. I knew that if I went back to my regular life, all my symptoms would be back, and I also knew that I couldn't stay on pred forever, and nothing else helped.

You just aren't going to be able to know 100% that something else might have helped.... but for me, as I said earlier, I just wanted to be done. If I missed something that would have worked, so be it, I just didn't want to try any more, and it seemed so unlikely.

Also, I don't think I did my body any favors waiting so long..... maybe I "proved" that I was really bad and nothing else would have worked, but my recovery has been slowed by how sick I was.....

I think what might be most useful here is that those of us who were ready in our hearts and our guts, did not regret..... it's just that pesky mind that keeps bringing up one more thing....

Yep, thought like that too, especially the fecal transplant thing. When I mentioned it to my GI she said a colleague of hers was interested in studying it but couldn't and when I mentioned to my potential surgeon who I really liked, she was really curious because she had just been to some talk of success by a physician with pediatric patients who could not take the harsh meds. So that makes me think the waves are rippling through the med. Community about it. Well, here I go wavering again, itmjust sucks because I would have to try it my self.

Thanks shaz.

I had to give myself permission to go ahead with surgery even though I hadn't tried "everything" out there. I was steroid dependent and realized that, even though there were thing I hadn't tried yet, I had received all of the treatment I wanted. I was done. I was taking 12 pills every morning plus using various suppositories or enemas and I was still sick. For me, it was a matter of being tired of waiting for the next flare up. Even when I was well, there was a little part of me just waiting for the other shoe to drop because I knew it was coming at some point.

My UC was always described as moderate and it was never as bad as what I hear others describing. I was never hospitalized for my illness (got close at the end because we kept increasing my steroid dose and they thought I might need IV steroids, but I managed to avoid it). I never needed a blood transfusion or anything like that. It did majorly interfere with my life though. I had to get up early to make sure I would have enough time to get all of my bathroom trips in before I had to be some place. I couldn't make even a short trip through a store without having to leave the basket some place and rush to the bathroom hoping to make it in time. There were multiple times I had to rush my nursing infant to his crib and leave him crying there because I couldn't wait. I've also nursed a baby while sitting on the toilet more times than I care to count. I wanted to be done once and for all and go on with my life.

I'm about seven weeks or so from my final surgery for j-pouch, and started this journey in March. I had my own set of challenges that made me a three stepper and required a pretty long wait between steps 1 and 2. This has been a long and daunting process, but I still can say I have no regrets. In the first few hours after surgery #1 I was so amazed at how good it felt to have that constant UC pain out of my body. Yes, there is surgical pain to deal with, and it's no joke, but the pain of your body healing is something entirely different from the pain of chronic disease.

So yes, only you can decide. Be prepared to have some of the people around you second guess your decision. My mom gave me a really hard time and my husband told me I was taking "extreme measures" but they both came around when I gave them a very candid run down of what every day with my illness was like. We hide it and cope with it so well that most people don't realize how much it effects us every day. Trust yourself and do what is right for you when you are ready. Also, keep reaching out to others for questions and support. It has helped me tremendously through this process.

I hope things go well w/the ultrasound, keep us posted.

I totally remember the multiple bathroom trips before work, hoping I was really done before I left....

Was it the coworker or your husband who advocated dropping all your dr's? Was that to get new doctors or to rely on Chines teas? I had a coworker who frantically emailed me before surgery telling me that acupuncture could cure Crohn's and wanting me to see her person and not have surgery..... I had already tried three different acupuncturists, sometimes having treatments the day before I started to flare w/out them picking up anything. Nice thing about being done is that you don't have to try another.

Some people are so wedded to their world views, and their illusions that they can't get sick because they are drinking the right tea or whatever, and that even if they did get sick, they would quietly deal and it wouldn't hardly affect them at all. I guess one of the few good things about having these diseases is that we get the opportunity to not be like that, to have more compassion/humility...... I mean, does my coworker, a professor in an arts department really know how to cure crohn's when my top notch gi doc at a major teaching hospital does not?

I wonder sometimes about the remicade etc. that I took and its long term effects.... but nothing I can do about it now....

The surgery really did help me a lot.....

Hang in.

Ultrasound today, thanks for the support