Thursday, May 5, 2011

To Share or Not to Share...

That is the eternal blogging question, isn't it? I have debated for more than a couple of days as to whether or not I should share the part of my experience I am about to write about. There are a couple of reasons why I hesitated. First of all, it freaked me out and I wasn't sure how I felt about it, let alone how to write about it. Secondly (and maybe more importantly) I didn't know if I wanted all of the parties who might stumble upon this to know about it. There are a few people (who shall remain nameless) out there who seem like they are just waiting for something to go even sort of wrong with this whole thing so that they can swoop in with their proclamations of, "I knew you shouldn't go through with this crazy surgery thing!" I was holding back out of not wanting to deal with those people or give fuel to their fire. Well, the reason I started this whole thing was as a record for myself and also as a tool for people who will go through this process after me (or maybe even are going through it now). I wanted to let people who are about to go down this road have a view into what they might be able to expect. I also wanted to let those who are already on this path know they are not alone out there. So the naysayers can just move along and the rest of you are welcome to stay here and read on.

I realized I had to write about this because it would now be item #1 on my list of "Things I Wish I Knew Before Surgery but Nobody Told Me!" Heck, I probably would put it in bold print with lots of asterisks and blinking lights all around it. Are you ready for this? When they take your colon out--if you still have your rectum--at some point stuff is probably going to come out of your butt. Even if that rectum is not actually attached to anything (which mine currently isn't). There are a few of reasons why/how this happens. The most straightforward one is that your rectal stump is still producing mucus. In a normally plumbed person, this helps stool move through the rectum and out of your body. For the colon-free, that function is no longer needed, but the tissues don't know that so the mucus factory keeps on doing its thing. At a certain point, enough will accumulate that it has to come out. Pretty straightforward.

A slightly more complex version of this comes into play if you, like me, have your colon removed due to UC. Almost two weeks ago I was minding my own business when I felt the urge to go to the bathroom the old fashioned way. This was rather puzzling as I know for a fact nothing is hooked up in there so there shouldn't have been anything processing in there (that I knew of at least!). Out of an abundance of caution, I decided to have a seat on my old friend the toilet and just see what was up. A few minutes later I was quite puzzled to have two small lumps and a few drops of blood pass. I pondered the weirdness of it for a few minutes (healthy people: trust me...UC'ers spend plenty of time gazing upon the contents of the toilet bowl...this is not as unusual as it sounds) and then went on about my business. A few days later the urge came again only this time there was more, and bigger, stuff coming out and a bit more blood. I was really starting to wonder what was going on so when the same thing happened again in a couple more days I freaked out and placed a call to my doctor. I had no idea what to think beyond the idea that the UC was flaring up in my rectum or something. I was freaking out thinking this was going to just keep getting worse until I was back where I was before surgery except now I had this ostomy bag hanging off of me and I'd been through six long weeks of recovery for nothing. The idea of this pissed me off beyond belief. It also got me to wondering if it meant I wouldn't be able to have a j-pouch after all. I was a mess! When I got the call back from my surgeon's nurse, she explained to me that the rectal stump was still involved with the colitis but it's completely normal to have this happening and I didn't need to worry unless I somehow started losing a lot of blood. It wasn't going to cause any problems for the future surgeries and I could relax. Whew! Relief. So why doesn't anyone mention this in the patient education materials???? You tell me. I am still trying to figure that out.

The third possibility for how this can happen occurs when your intestine has been hooked back up to the rectum, but you're still by-passing things with a loop ileostomy (this is where I'll be at after Step 2). The loop ileostomy has a second tiny opening that leads to the lower part of the small intestine where the pouch is located. Stool can actually seep into this tiny opening and down the small intestine, eventually needing to exit through the rectum.

So yes, these things can happen. No, you are not broken or going to die---though if you are bleeding a lot you should talk to your doctor right away. I really wish I would have known about this because it really threw me for a loop when it started happening repeatedly. It reminded me of my UC days in a bad way and that was pretty traumatic after going through all the rigors of surgery to get rid of that stupid disease. Happily, this seems to only be happening once every 2-3 days and there is no pain or urgency with it so I can deal with it until we move along in the process.

Before I wrap things up, I just want to give a shout out to a reader and online support group buddy of mine, elddiremsiht. She is working on kicking butt against some complications right now and is definitely in my thoughts, along with her wonderfully supportive mom. I hope you both are well and things are progressing as they should.


  1. I can completely relate to how hard it is to decide to make your story public on a blog. I just created one tonight: ( and posted a link to it on a Facebook page. I realize that all my friends, coworkers etc. are going to know about my UC bowel woes and surgery specifics, as I am fairly candid in my videos and posts. Oh well. With great risks come great rewards. I want this disease and these surgeries to not be so hidden so people are comfortable talking about them and getting the help and support they need.

  2. Awww, thanks so much for your healing thoughts! I sure was glad to get out of the hospital on Saturday, although I had been excited about the idea of getting to meet you if I had still been around on Monday! How was your checkup?

    I hope I haven't completely scared you about the second step - for some odd reason, it was way harder than the first one for me, but I don't think my reaction was the norm. The diagnosis on my discharge paperwork said "failure to thrive after surgery." Who knows why it happened, but it just took me a couple of weeks to get going again. There was no real physical reason for my symptoms. But I'm starting to do really well now, yay!

  3. The biggest problem that people have in the initial phases is confusion and lack of information. I have been recently diagnosed with UC and i am finding it difficult to cope up with it. I found your blogs very informative. Would it be ok if we can chat on Gtalk to share our experiences. Can you please provide your gmail id.

    Thanks a lot.

  4. Heidi: Go, you! I will head over and check your blog out. So happy to have one more voice out there sharing what we go through.

    Elddi: Who me? I'm not scared of anything! Ok, well spiders and stuff. I'm so glad you were able to get out of there even though it meant missing out on a meetup. :-)