Back on Track

Back in February, I posted that I would be adding more content to this blog soon. I am very sorry to those of you who have kept up with this blog, and I thank those of you who messaged me to check on my well-being. I really do have some great readers, followers, friends, and family!

Things lately haven't been well for me, physically: I've lost 7 pounds since last Wednesday, I'm in constant pain (and the painkillers make me feel way too loopy), depression is making me crabby, I can't eat anything besides simple carbs, and I'm just so done with this flare-up!

Here's the latest update on my particular surgery case... if you recall, the surgery was originally supposed to happen in December. Then I got SHINGLES, so it was postponed. A few other things happened in between the last few months that made the surgery get postponed again, one of them being getting a new surgeon. My GI doctor, whom I trust very much, strongly recommended a different surgeon, one who specializes in Inflammatory Bowel Disease surgeries. The previous surgeon was a general surgeon, so I was more than happy to oblige for the second opinion.

I met with the new surgeon today for a consult. She is wonderful! She answered all of the questions that my boyfriend and I asked, and explained/showed us exactly what she's going to do. There's no longer any mystery surrounding this surgery; I am fully aware of what to expect.

The plan is to remove my ileum (the portion of the bowels where the small intestine meets the large intestine), as it is actively diseased. She'll re-sect the small and large bowels back together, but I just won't have that "flap" of the ileum anymore.
She'll also be removing a portion of my Sigmoid colon (the "S" shaped portion of the large bowel, close to the rectum). This particular area has been the source of active Crohn's since I was first diagnosed. I am actually EXCITED to have that part removed!

Finally, she'll detach the fistula that has invaded my bladder, and remove any additional diseased areas. The bladder may need a stitch or two, but should heal up fine on its own after surgery (with proper care, of course).

While the current plan is to re-attach and have full-function of my bowels after the diseased portions are removed, there is a small chance that I may have to have a temporary stoma and colostomy bag. I'll make a post about these appliances soon, as it's fairly common for Crohnie's to have them. This news doesn't bother me at all, but for some people, the thought of having what is essentially a bag of poop hanging off of their body is a bit hard to consume.

The best part of the meeting with the surgeon is when she said what I have wanted to hear for so long: this surgery will most likely afford me LONG-TERM REMISSION!!
With that said, remission requires care and maintenance on my part and my GI doctor's part, but I may just have a period of life ahead of me that is pain-free, bloat-free, bloody stool-free!! It's no secret that Crohn's Disease can and will come back in most patients, sometimes in a different area of the digestive system. But with proper maintenance medication and personal care, I hope to fend off any return of CD!

We're looking at either May 6th or May 14th for dates of surgery; that will be determined by the coordination ability of the scheduler at the hospital. Since a urologist will need to assist with the bladder portion of the surgery, this will be a highly choreographed event. The whole thing should take 3 to 4 hours. Planned hospital stay of 3 to 5 days, if everything goes well. I'll be facing about two months of full recovery time after surgery, but I'm hopeful that it will go quickly.

Not a whole lot of "funny" to write about right now, given my current physical and mental status. But I promise you, my funny bone is still fully intact and will be droppin' fat jokes again soon! In the meantime, check out some of my previous blog posts to learn and laugh!

What's It Like?

One area of research I have had a hard time finding information on is the surgical experience. 75% of people diagnosed with Crohn's Disease will require surgery at some point (source: CCFA). However, when I would search for articles, blogs, or any kind of "user reviews" on Crohn's surgeries, I mostly just found medical journals - no actual user experiences. That's another reason I'm creating this blog.

My healthcare team and I recently decided that surgery is the best option for me right now. I have two fistulas: one enterocolic fistula (connecting my small intestine to my bowel), and the other an enterovesical fistula (connecting my bowel to my bladder). The surgery, called fistulectomy, will be done under general anesthesia, and will be open-abdominal, rather than laporoscopic. This means the healing time will be quite long, and I will spend a minimum of 7 days in the hospital.

That's all I really know at this point, as far as what to expect. But I want to know more - specifically, what will I feel the moment I wake up from surgery? How much pain should I expect and for how long? What kind of tips/tricks will help me heal quickly and safely? What will life at home be like for the first few weeks? These, and many other questions that I have cannot be answered with anything other than "general" answers by my healthcare team. So, I turned to the trusty Internet, where I have always found answers.

I came up empty-handed.

I finally posted my questions to Crohn's support groups on Facebook, and received a few very general answers. "Surgery was the best thing I ever did!" "It was painful, but it was worth it." These weren't the answers I was seeking. I wanted to know about the whole experience. What's it like to go in to surgery? What's it like to wake up after the surgery? What's it like at home?

That's the ultimate reason for this blog - to give future Crohn's patients a place to find out what it's like. From surgery, to medications, to flare stories, to foods we can/can't eat, I want to share it all. And I'd eventually like to have more than just my personal experience; I'd like to have other Crohnies contribute their experiences.

Every Crohn's Disease patient has a story, and every story is a little different. This is my story.