March 2, 2011

I know it's been a while since I blogged. I did get my appointment date from Mayo. The first appointment was with a nurse practitioner to go over my medical history and figure out what testing I needed to do. I spent a couple of days doing blood work, a chest x-ray, and an abdominal CT scan with contrast. After that I met with my surgeon, Dr. Larson. The next day, January 28th, I had surgery. My rectum was removed. My j-pouch did not need any other revisions, which was a blessing. Surgery was on Friday and on Sunday I was discharged from the hospital.

A few days after surgery I spiked a fever. I went back in and did a urine test and more blood work and saw Dr. Larson. We thought it was a UTI so I started on antibiotics. After a week I wasn't getting better and was getting worse. I went back in for another abdominal CT scan where they found an abscess that had formed in the shape of a horseshoe around the outside of my j-pouch. There was a small fissure from my j-pouch leading to the abscess. Right there on the CT scan table they did a procedure where they cut a hole in my butt cheek and inserted a tube that went directly to the abscess. At the end of the tube is a plastic bulb which is squeezed closed to form suction. That is the treatment for the abscess. They also started me on two other antibiotics to keep the infection from entering my blood stream. I was hospitalized for a couple of days after that for observation.

I've had the drain tube in for, hmmmm . . . is it three weeks now? Each week I go in for a sinogram, where they insert contrast into the drain tube and take x-rays so they can see how much the abscess is shrinking (which it is). The first day my drain collected 410 ML of fluid. Today it collected less than 25 ML of fluid. I'm hoping we're close to the end of this as I have not enjoyed having a tube and bulb hanging off my back side. Dr. Larson said once the abscess cavity has collapsed, he may have to reposition the end of the tube so it is directly at the fissure and can help collapse that space too. I'm hoping that happens without having the reposition the tube (as that process is a little painful). Dr. Larson said, "This is recoverable," when he explained the abscess and treatment process. "It's just going to take patience." Okay. I can do patience. He said it could take anywhere from 1-6 weeks for the abscess to heal.

I had to ask him about my worst fear (another surgery). "Is it possible the abscess could get worse and I would need surgery?" In his ever-so matter of fact manner he told me it was, but that it was unlikely that would happen.

Meanwhile, last week, I noticed the skin around my stoma was getting red and felt hot to the touch. Not good, I know. Oh, and it hurt like a son-of-a-gun. Then I noticed a little puss coming out round the edge. Ay-yi-yi. Not good. At my weekly appointment with Dr. Larson, I brought up the issue and he said he would take a look at the stoma when the ostomy nurse changed my bag. He said I probably had a little skin infection that they would put me on another antibiotic for. But then he actually saw the infection. "Oh. We're going to need to open that up," he said sort of under his breath.

I lay on the table with him and the nurses poking at the infection. Tears flowed. I groaned and said, "Oh that hurts! That hurts!" several times. Dr. Larson kept apologizing. "Please can you stop?" I asked in sobs. "Yes. We can stop." He told me they would use lidocaine to numb the area, but the lidocaine would hurt and burn, and then he would slice open the infected area. Couldn't they knock me out to do this? He started with the lidocane. "Oh God, oh God, oh God," I whispered as I focused on the ceiling above me. My hands began to shake uncontrollably. Then I felt my upper body begin to shake. "Are you okay?" Dr. Larson asked, and then frowned at himself and said, "Of course you're not okay." I did have some immediate relief after that, though the pain of the cut started a while later after the lidocaine wore off. Dr. Larson apologized numerous times for the pain. He squeezed my shoulder and said he was sorry that all he seemed to do was torture me when I saw him.

I've gone in to see the ostomy nurses several times since then and the infection has been getting better. They helped find an appropriate bag that would fit my stoma and would allow the infected area to drain. They've all been very concerned that my bag would work and wouldn't leak. I've been grateful that they understand the importance of that.

Jeremy and I both have family within an hour or two drive of the Mayo, so I have been staying close in order to get to my appointments and ensure Dr. Larson can follow my care. I'm so glad I've stayed. Mayo is amazing. I'm sure I will dedicate an entire blog entry to my Mayo experience. Jeremy has gone back and forth between Tucson and the Mayo area. The times he is back home are very hard for me - and for him. We are still on track for having my ostomy take-down surgery the end of April. That time CANNOT come fast enough in my book.

Whether it's the pain, all the medications, or the psychological part of having an ostomy again, I don't know, but my appetite is horrible. It really freaks me out. I know I'm only going to get better if I keep my body fueled and get plenty of protein, but I seriously fight my gag reflex with most meals I'm eating. Jeremy told me tonight I'm thinner than he likes to see me. I'm not skin and bones, but I have lost some weight. I'm trying though. I'm trying . . .

So thems the facts of what's been happening. My emotional journey here has been much more difficult than I was anticipating. I'll be writing more about that soon . . .

I continue to be grateful for the support Jeremy and I have received from our family and friends that have made my journey to a healthier life possible. My heart wells up with love for you all just thinking about it.