Saw the local colorectal surgeon on Tuesday (the one I saw about my hemorrhoids back in February) and saw current GI on Wednesday. Both appointments went better than expected.
Colorectal surgeon asked me questions, including “Are you sure you have a fistula?” and “Are you sure you have Ulcerative Colitis and not Crohn’s?” The answer to both questions is emphatically–YES–but with hesitation about the UC vs. Crohn’s diagnosis because I need a colonoscopy and biopsies to confirm a diagnosis. So far all tests (and my 13 year disease history) point to UC. But people with UC only rarely develop fistulas–that’s a characteristic of Crohn’s–so I see why all my docs are skeptical.
The Surgeon had me drop my pants and lay face down on her table. She commenced poking and prodding and the *highlight* was when she performed a “digital rectal examination” (finger in the butt).
But the good news is my fistula is superficial (only in the skin) and Surgeon only needs to “lance it and lay it open” (fistulotomy) and it will heal. This is great news, because many fistulas require more complex surgery, sometimes multiple surgeries, and can take months or even years to heal. I got super lucky to have an uncomplicated fistula, and I’m grateful to have caught a break on this one. I’m scheduled to have the procedure under anesthesia on May 10th. I could have it done outpatient but that’s not how I roll–prefer to be KO’d and blissfully unaware for procedures.
Saw current GI on Wednesday. To my surprise he actually suggested that I have a second opinion and told me he’s like to refer me to an IBD specialist in his city. I thanked him and said I’d be happy to follow his recommendation. I then asked if he’d mind if I saw my old GI in the midwest while I’m back home in May, and current GI was all for it! What a relief!!! I thought I would have to be the one to bring up getting a second opinion and I was dreading it.
I was so flabberghasted by the way the conversation went that I neglected to press current GI about my medication options to help me wean off the prednisone. But I honestly don’t think he wants to discuss it until after I get a second opinion. So for now I’m stuck at 25mg prednisone. Hating it (prednisone) because I have “moonface” and look chubby even though I’ve lost weight. Had hoped to be back to my old self soon. I really have to let go of my expectations.
Current GI examined me and again (2 days in a row) I received a “digital rectal examination”. He was going to stick a scope in my anus but I requested he not do that and he obliged.
So I need a colonoscopy and current GI said he *can* do it but indicated that one of the second opinion docs would be a better choice. I was surprised he said that. Initially I thought to have the procedure done by my midwestern GI when I see him during my trip home. But talked to his nurse and he is booked that week. Which is actually better because I’ll need someone to take me/pick me up and look after BG because I’ll have to be under anesthesia.
I decided to see if the local Surgeon can “supersize” my order and add a colonoscopy onto my fistulotomy, since I’ll already be under anesthesia and this way Mr. MLACS would only have to take one day off work. I called today and spoke with Surgeon’s nurse, who informed me that Surgeon prefers not to combine the procedures, but she will ask Surgeon and get back to me. Fingers crossed that Surgeon agrees to do both procedures on May 10th.
As for me, my symptoms are still the same, haven’t worsened or improved. Urgency, tenesmus, toilet bowl red with blood, passing very little stool, 5-6x per day. I’m fatigued but still managing quite well. However, I think I need to be checked for anemia. Been bruising easily and today felt winded walking through CVS. I really do not feel like messaging current GI to ask for lab orders and kick myself for not requesting them yesterday, although to my credit, I did inform the MA of my concerns when she was taking vitals and information–so GI ought to have mentioned it.
I started exercising again–tried my first pilates class using the reformers and LOVED it! It’s the perfect activity for me right now and I thought it was fun! The teacher is lovely and I did so well that she asked if I should consider becoming certified to teach. This made me feel good and also has inspired me to find my way back to the fitness industry. I love helping people reach their fitness goals (coaching) and I want to do something outside the home. I’m not prepared to seek certification or teach just yet, but I will start looking into it and find an opportunity when the time is right. Oh! I bet most of you don’t know that I was a fitness competitor and personal trainer for years. Love it but my UC started flaring in 2011 and I never fully recovered–it’s been a rocky few years–and sometimes I don’t see the inside of a gym for weeks or months. So I just do what I can, when I can. And I hardly feel qualified to motivate other people when I’m not in shape. Hopefully that will change soon via meds or surgery, because I miss my super active lifestyle. I’m a “jock” at heart.
We dyed Easter eggs with BG tonight and she was a riot! Threw the biggest fit until we were done coloring the eggs and then greedily shoved them in her Easter basket and clutched them to her chest. Then commenced playing with them–Mr. MLACS was a gorgeous blue “daddy” egg, BG was a radiant pink “baby” egg, and me… I was a cracked yellow “mommy” egg. Mr. MLACS teased me because his “daddy” egg was shining bright like a diamond and my “mommy” egg was plain and beat up. None of these eggs will last until Easter but c’est la vie–just hope BG doesn’t hide them where we can’t find them!
For Easter I bought BG a bunch of trinkets, like a slinky, silly putty, bubbles, stickers, etc. But no candy because refined sugar turns her from a mogwai into a gremlin–seriously, she loses her mind. Plus her idea of a treat is organic fruit snacks and chocolate graham crackers, so why ruin a good thing by showering her with candy?!
Hope you all have a lovely Easter weekend. We will be spending it just the three of us ❤