Doc suggested surgery but not sure I am that sick

I trust my GI doctor, but can't help but wondering how you know you are ready for surgery. I have been in a flare for about 5 months. Despite the added immunosuppressants, I'm not getting better. He said we can try switching my biologic, which I know can induce remission in some patients. But, if that does not work we will have to consider a colectomy.

I have never been hospitalized for my UC and generally haven't thought of my condition as "that bad". Obviously I am leaving out all the details because I feel like people who visit this forum are all too familiar with the typical symptoms of a flare.

My question is: has anyone had a colectomy without being hospitalized or at least seen in the ER for their UC?

Ps, this is my first post. I have a medical background so no need to dumb things down for me.

Post Edited (LushNabi) : 3/20/2014 4:22:30 PM (GMT-6)

I should have mentioned, I have been seeing a RD who specializes in UC for 4 months... Avd have removed ALL possible trigger foods and am on probiotics (3 depending on current symptoms).

My GI does know the literature well, but he is a wee young (like 40).

I wouldn't use "never been to hospital" as a marker on the basis that UC patients often resist hospital - we can be pretty stoic.

I would base my opinion on how unwell you are at the moment on how many bms, whether you're going at night, how much blood, how formed the stools are, what immunosuppressants you're on, what dosage, how long you've been on them, how different this flare is to your past history, what your blood results are like.

If you are very unwell and not responding to steroids, or imuran / aza / 6MP either and have been on them long enough to work, then your other short term option is Ciclosporin (Cyclosporine), and in the longer term biologics.

My IBD Specialist and my surgeon are both 38. 38! What have I been doing with my life?!?

I bet they don't have a kid about to graduate high school though

Surgery is usually a quality of life decision, unless you have a dangerous finding like cancer or severe strictures (like T6). Your GI might be at a point where he doesn't have any treatment offerings for you besides surgery, and that's not his fault, it's his professional opinion. If you don't want to take it, then you'll have to get a second opinion from another GI.

Lush: From the tone of your post I would say that you are not ready for surgery. You said you have been in a flare for 5 months. Is that how long you have had UC or have you had it longer? What all drugs have you been on and which ones are you on now? Personally I think you should give us the details of your current symptoms. Many here have miserable symptoms and still have their colons.

Thanks for all the responses! Ok, so clearly I wasn't detailed enough in my initial post [I thought my signature was automatically listed... whoops]. I felt bad about "whining" about my symptoms. As one responder mentioned, UC patients are often stoic.

I have been diagnosed with UC since 2005, though reflecting back, I've had it much longer... simply didn't want to see the doctor. It was only after 3 months of heavy bleeding and severe weight loss that I decided I really needed to see what was going on.

Fast forward to 2014... I've been in a pretty bad flare for at least 5 months. Meaning, I finally broke down and went to the doc 5 months ago. I am on Remicade, prednisone (40 mg), Asacol (4800 mg), salofalk (1 per day), and cortifoam 10% (1 per day). I've already had a month of 40 mg prednisone--that has reduced the number of BMs, but the blood and pain are getting much worse. It honestly feels like I've had abdominal surgery... prior to the prednisone, I had about 20 BM/day, now I'm down to ~5. So, that part is good! His concern is that I'm not really going into remission on these drugs. Of course, we are waiting... and seeing if maybe the steroids will take effect. If not, we will switch to Humira. I have better hopes for Humira based on clinical studies I've read where patients who fail Remicade respond to Humira. It's only a percentage of patients, but hopefully I will be one of those patients.

If not... he said he really doesn't think 6-MP or its prodrugs will work for me, but we can try it of course. But, we're running out of drug options. I've turned to holistic approaches and am even going for cupping this weekend to see if it will help with the abdominal pain (I kinda doubt it, but I figure it can't make it worse).

I have been thinking about surgery for a while. Mainly, I want this to be over. My quality of life sucks. I'm having accidents and I'm unable to leave my house. But, from what I've been reading, surgery isn't necessarily a magic fix... it comes with its own potential complications.

My surgeon said that outside of a cancer diagnosis, quality of life should be reason enough for surgery. I lived in a chronic flare for 2.5 years before ultimately having surgery. There were many times in that 2.5 years that I would rather have died than have surgery. I met a nurse that had jpouch surgery and that face to face meeting changed the course of my life. She was my age; she was very physically active, and she was healthy. My mind changed that day and a few months later I received my jpouch. It's been 13 years now with a jpouch. I'm the healthiest I have been since before the UC diagnosis. I eat what I want, take no medication, and travel at will. My life is predictable. My life is fantastic.

Sue

Thanks, Pluot, due bear, and ByeByeUC. You have all helped me realize that I was only looking at one small portion of the equation.

Is everyone a candidate for a j pouch? I realize it is a stepped procedure so the pouch can heal. But just curious if all patients with UC are generally able to have the procedure. I think I will have a surgical consult. There is a fantastic hospital that does clinical research for UC, I am sure they would be well equipped to lop me bits off.

Sorry if this is an odd question, but, can a j-pouch be reversed and the patient go back to an ostomy bag? I've heard of the occasional j poucher who is very unhappy with it, pooping way too much etc. This is what worries me most about the surgery. I think if it were possible to go back to an external pouch it would ease some of the worry about the j pouch being permanent for better or worse. Not that I'm anywhere near surgery, but just thought I'd put it out there, incase others worry about this too. I think I've said it before, but I will say it again... I'm much less afraid of living without a colon than I am of "living" my life in the bathroom.

Just for the record, if you really don't want surgery, then why not try 6mp? I have been on it 4-5 times over the last 20 years. 3 of those times I used it in combination with a biologic (remicade, Humira, Cimzia) and it was able to bring me into a remission when steroids and a biologic alone could not. It's a heavy drug with hard side effects for me- severe exhaustion mainly, and it takes 3 months for it to really kick in, but....I believe it has saved me from surgery and coud possibly help you. Especially if you would like to exhaust all of your pharmaceutical options before deciding on surgery.

toomuchpoopin said...
Sorry if this is an odd question, but, can a j-pouch be reversed and the patient go back to an ostomy bag? I've heard of the occasional j poucher who is very unhappy with it, pooping way too much etc. This is what worries me most about the surgery. I think if it were possible to go back to an external pouch it would ease some of the worry about the j pouch being permanent for better or worse. Not that I'm anywhere near surgery, but just thought I'd put it out there, incase others worry about this too. I think I've said it before, but I will say it again... I'm much less afraid of living without a colon than I am of "living" my life in the bathroom.

Disconnecting the j pouch and going back to an ostomy is a relatively easy procedure. It's having the j pouch removed that is the big, complicated and risky procedure. I have read posts from people who still have their j pouch but it's just disconnected and everything is fine. Then there are the people who need to have the j pouch removed otherwise there will be ongoing issues. Of course this is a small percentage of people but if it happens to be you, that isn't much comfort. I was satisfied hearing from my surgeon about the high success rate of the j pouch. I was so sick at the time that I had nowhere to go but up. The decision is easier for some people than others.