Wow. This has been a really long day. My appointment was at 9:30 this mrning, but I was supposed to check in at admissions in the main building here at Mayo at 8:45. At the Mayo Clinic, everything is connected by a series of skywalks and subway tunnels. It’s really an impressive system and there are a bajillion people scurrying all over the place. It’s initially very overwhelming, but once I had checked in at admissions, it was like I was a small cog being carried in a a well-oiled machine. Up to the ninth floor, to the digestive diseases department, and there we checked in and were given a pager, as well as a stocked packet of all of my medical records that had been sent from home.
I was beginning to feel really nervous. What if I had forgotten something? It was almost like stage fright – like I would forget my lines. We were ushered into an exam room, finally, but a lady named Patty who looks just like my Aunt Cheryl, but with a Minnesotan accent. She was super nice – she was also our scheduling coordinator. The room itself was large, and offered a long banquette for us to sit on. There was a window that looked out over the impressive Mayo campus on a pretty fall day.
Dr. Pardi was tall and straightforward. He sat down and reviewed my records and we discussed the past three and a half years of my disease. He was concerned some over the two episodes of pancreatitis I had experienced, and wants to further investigate that. However, when it comes down to treating the ulcerative colitis, I have three options left:
- Option 1. He believes that Remicade (the infusions I’ve been receiving every 4 weeks) will eventually start to fail me as it won’t work forever. The body starts to get used to it and it’s efficacy is diminished. So what does that leave me with? I can’t stay on prednisone forever, and I certainly do not want to. I hate the stuff. And I’ve exhausted nearly every other drug for ulcerative colitis. So Humira is my very last option, and it is an injection that I can give myself.
- Option 2. Sign up for a clinical trial of a new investigational drug that might be held in Oklahoma City. The clinical trial is 50/50 in many ways. You may or may not respond to the treatment; the caveat is that you may or may not actually be given the drug. It could be that you are the recipient of a placebo. So that’s essentially a crapshoot.
- Option 3. Have surgery to remove the entire diseased colon, effectively curing me of ulcerative colitis forever. This surgery is done in two parts. The first part, they remove the colon and give you a temporary ostomy bag (so, basically, you poop into a bag). Everything has to heal, and 3 months later, you go back for round 2 of the surgery, and you are able to poop naturally and the ostomy is sewn up. You don’t ever have to take medicines for UC ever again, and you are essentially cured of the disease. (NO MORE STEROIDS?!? WHERE DO I SIGN UP?)
When the doctor told me that the Remicade was eventually going to fail me, it was as if I felt like he told me that my husband was going to meet another woman and leave me. I felt incredulous, unbelieving. What about all those promises that Remicade made to me? Wasn’t it going to be there forever, in sickness to bring me to health? I mean, c’mon — you were pretty expensive there, Remi. Was I not keeping up my end of the bargain? And that’s when I started sobbing like a baby in the doctor’s office and went into total shock. He was a straightforward doctor, like I said, and he just laid it all out there, unemotionally, in black and white. Thank God Dad and Simon were there to hold me together and to fill in the blanks on things because I was completely unable to form a sentence. I wanted the Aunt Cheryl lady to come back and hold my hand. Before I knew it, we were scheduling a consultation with the surgeon for the afternoon, and I was being handed a packet of information on educating yourself about J-pouch ileoanal surgeries.
To be fair, none of this was really all that earth-shattering to me. I’ve been prepared for this. I’m a smart cookie – I also like to know my worst-case scenario, so you better believe that I probably could’ve given the doctor the presentation on how they do the 2-stage surgery and then what to expect afterwards. I could tell him the exact URL of UC patients’ blogs that have experienced it. I know it all. But now the rubber hits the road, and I am mulling a decision and that changes everything.
I think I came here hoping beyond hope that there would be just something else. Anything else. Anything other than pooping in a bag or steroids. Like maybe my doctors in Oklahoma just don’t have a clue, and the Mayo people have been hoarding all the great UC secrets for the Chosen Few that manage to make the haul up to the Frozen Tundra. But the facts are these: I cannot — I will not – be on steroids the rest of my life. It’s not physically possible. And Lord only knows what other damage it’s caused (hence a bone density scan I’m getting later this week). Prednisone is the devil.
So what else is there to consider? Fertility, for one. If I go through with it, it could seriously mess with my chance to have another baby. Which sucks. But it’s not a completely done deal – plenty of people go on to have babies and they’re fine. And then there’s also the whole living-with-the-j-pouch thing, which has its complications.
But in my mind, it all comes back to the whole no-drugs thing. No more drugs. No more getting up every day and taking 15 different pills that mess with my brain and my body and my gut. I cannot even imagine that. For three and a half years, my life has been controlled by my gut, and if I could have the opportunity to not have it rule my life, that might be totally awesome.
So all this to say, it’s been a hugely emotional day. They’re going to look at my pancreas later in the week because previous CT scans from previous hospitalizations show that there’s a spot on there, which could be nothing but could be something. It was also at this point that I started boohooing all over again in the doctor’s office. Where in the heck is the Aunt Cheryl lady?!
Afterwards, we all went to a restaurant and ate Walleyed fish. And I was amazed at how calm my parents were. I am a complete mess and will remain a mess the rest of the day, although I manage to hold it together when I meet with the surgeon, an Asian woman that draws comparison to Christina Yang on Grey’s Anatomy. She enters the exam room with two men in black suits, her assistants. She is straightforward, matter of fact, but is able to answer my questions about reproductive concerns. I am calmed by this.
So then we decide to rent a car, and drive around. Rochester is a really gorgeous little town with lots of pretty little houses. The leaves are all changing, and it really is just so pretty. And then I start up Waterworks Round 17 of the day. I don’t know why. I’m just crying and overwhelmed. So we decide that now is the optimal time to take Bridget’s advice and get ourselves to the Canadian Honker because quite frankly, we need a pick me up and any place named Canadian Honker (or Canadian Hooter, if you’re like us and can’t remember names right) is bound to perk us up.
And it did. We ate lots of yummy buttery garlic toasts, and I had broiled walleye and then there was this incredible coconut cake that made our day. And as we were leaving, we highly considered purchasing some of this:
Because let’s face it – this is a trip all about poop.
Well, so now we’re back in our room for some downtime. Tomorrow morning I will go get some blood tests, and then I will get that bone density scan. Who knows – we might even get in a trip to the Mall of America before this thing is all said and done.
So there you have it. If you’ve made it this far, reading about poop and doctors and surgeries, you are truly awesome. I know it’s heavy stuff, but like I’ve said before, I’m all about being real and transparent, and I guess this is about as real as it can get.
Thanks everybody for all of your comments, love, prayers, and support. It has made a difficult day a little easier to get through.