Wednesday, March 2, 2011

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.

Wednesday, January 12, 2011

Next stop, Canaan

January 12, 2011

Tucson is my home, my community. And while the shooting that occurred on Saturday did not involve me or anyone I know directly, the degrees of separation are few in this little big city. The sadness is palpable as we all go about our daily routines.

The trauma of it all has caused old traumas to resurface, not just for me, but for many of us. For me personally, UMC, the hospital where the shooting victims went, was the hospital where I lost my daughter and my colon. I think of Gabby Giffords and the others, picture them there, hear references to the hospital all day long, and my body almost immediately tightens, every muscle freezing in some sort of deep, primal remembering.

I try to fathom the healing journey the survivors have ahead of them, not just physically, but mentally and emotionally and I cry out to God, Please give them the strength and courage to heal God. Please. Don't let them be discouraged.

I wish I were a better person and could say that my own troubles and worries have fallen by the wayside as the weekend's events put my situation in perspective. But I'm not a better person. My already burdened mind is ever so slowly slipping down the muddy slope of discouragement. But here's the key! I know that's what's happening. I'm getting discouraged and I know it. And I'll be damned if I'm going to be discouraged right now. There's just no room for discouragement right now. None.

Jeremy, as you undoubtedly know, is a musician. The man inhales and exhales music. And while we don't necessarily have the same taste in what we listen to, he knows what I like. He knows what I don't like. He knows what I love. He knows what moves me. His knowledge did not fail him this morning either.

"I picked up the newest Daniel Lanois yesterday. You've gotta hear this song. You're gonna like it," he said as he popped the disc into the player. The music started and I was digging the beat. The first verse, Yeah, okay, I really like this, and then the chorus started and it socked the breath out of me. A wall of voices, crying out in song: "How far am I from Canaan? How far am I from joy, from joy? How far am I from Canaan? How far am I from joy, from joy?"

I was overwhelmed and started crying. "Oh sweetie," he said as he came to sit beside me and held my head against his shoulder, "I knew you'd like it."

I've listened to that song on repeat all day. You can be in Canaan right now Abby. You just have to choose it. With every tragedy that has befallen you, you have been touched by just as much goodness, grace and love. Don't just see the tragedy Abby. See the goodness. See the grace. Feel the love. And so that's the choice I'm making today. That's the choice I'm making right now. To see the beautiful things we do to support and love each other in times of need. To see the courage we give to one another. To see the faith and hope we inspire in one another. That's what I'm choosing.

Canaan is right there in front of you.

Friday, January 7, 2011

Now we wait

January 7, 2011

"So you're ready for the revision surgery Abby?" Dr. T asked. "I'm not going to lie to you, it's going to be difficult. It's an extremely complicated surgery. I would like you to go to the Mayo Clinic in Rochester to have it done. What you need is a team that can follow you for life, because you are going to need lifelong care, and none of those doctors are going anywhere. If you were my sister, that's where I would want you to go." She went on to describe that Mayo has diagnostic equipment that she doesn't have access to here. She told me about the specific surgeon she wanted me to see and said she had already consulted with him about my case and that she would be calling him again this weekend to talk more. She told me the name of one of the world's leading doctors on pouchitis (which I have had) who is at the Mayo. She said they have an excellent GI team and a whole team of ostomy nurses who know their stuff. They have done more j-pouch surgeries than anywhere else. She did her residency there and knows the teams personally which is a bonus.

Relief at her level of concern for me brought me to tears and I sobbed, "Thank you." We talked about the possible complications, incontinence being one of the scarier ones for me. We talked about the possibility of ending up with a permanent ostomy and how one of the surgeons at Mayo would probably try to convince me to choose that route without even trying the revision surgery. "Of course I don't want to end up with a permanent ostomy, but if it happens, I'm prepared for it. People live healthy, active lives with ostomies. I just want to be healthy," I said. She said that was a good place to be mentally going into the surgery.

Mayo is out of network for my insurance. Dr. T said she didn't think she would have any problems getting approval for it though. "I'd be surprised if I even had to talk to your insurance company," she said as she wrote on the referral form Extremely complicated surgery. Refer to Mayo Clinic.

Dr. T told me Mayo would call me with an appointment time. At that appointment I would meet with the surgeon. They would do some tests (probably a pouchogram) that day and then most likely would do the surgery the very next day. For sure they will remove the remainder of my rectum. Whatever other revisions they do or if they need to make a whole new pouch will be determined upon the results of the tests they do. She said typically people are hospitalized for five to seven days after the surgery, but it may be a little longer for me. I was hospitalized for 13 days after my original j-pouch was created as I had a few complications. She said they like you to stay around the area for a while before flying back home after the surgery too, though I wasn't completely sure what that timeline would look like and I'm sure will depend on how I'm feeling and if there are complications or not.

I will have a temporary/diverted ostomy after the surgery so the area can heal. I asked if the quality of my temporary ostomy would be better because I had so many problems with the previous one. She practically scoffed when she told me it would be better quality. After about three months, if all goes well, the ostomy can be taken down. She said she could do the takedown surgery for me, but she would prefer I have the same surgeon do it so that I have that continuity of care. She said she would want me to have my annual scoping done at the Mayo too.

She spent plenty of time talking about the possible complications. "You understand the rectal sphincter is going to be traumatized again, which compromises it?" Yes. I told her I understood. I showed her the research articles I had read. She seemed to get excited as she looked at the articles because she personally knew the surgeons who had written one of them.

She asked us about plans to get pregnant. We told her we had none. She said chances of getting pregnant the old-fashioned way decrease with each surgery. She said she would want me to talk with a fertility specialist anyway while we were at Mayo.

After talking about all the risks, Dr. T told me the surgeon she wants me to see would be much more optimistic about things. All that being said, she said she was glad I'm doing this and thinks it's a good choice.

I'm still processing everything we talked about. But I'm ready. And so now we wait to hear from the Mayo.

Wednesday, January 5, 2011

Here we go!

January 5, 2011

I’ve been reading. Trying to educate myself for my appointment with Dr. T today. Articles like Ileal Pouch-Anal Anastomosis: Reoperation for Pouch-related Complications and Reconstruction for Chronic Dysfunction of Ileoanal Pouches. I feel like I have a good grasp on the complications that can occur (and there are many) and on what the chances of improving my quality of life with this revision surgery are. Each article mentioned that no one in their research died from resulting complications. Okay. That’s good. I’m not risking my life here . . . just my quality of life.

I had an emotional reaction when I read about the average improvements in frequency of bowel movements after revision/reconstruction surgery (both daytime and nighttime improvements in frequency). I also realized that I have more symptoms that are not what is expected after having a j-pouch surgery than just rectal pain. Please understand, I have never expected my life to be what it was before UC. Never. But there has been plenty of research describing what life for the average j-poucher is. So it's been hard for me to know what is just something I should live with and what is something that can improve. From reading these articles though, I’m hopeful that my functioning will improve in more ways than just not being in pain any more, not to mention the UC will be completely removed from my body. That thought is actually exciting to me. And I realized too that I am the only person who can decide what I am willing to risk to improve my quality of life. I'm the only one living in this body. I am not satisfied with my quality of life right now.

So I feel confident going into this appointment that I will ask educated questions and hopefully my emotions will be under control enough that I can actually hear and understand what Dr. T is telling me. I’m glad Jeremy will be there for that reason too. It’s always good to have an extra pair of ears at these appointments. I can’t tell you how many times we’ve debriefed only to find one or the other of us had picked up on significant information that the other missed. It’s good to have a life-partner who is so willing to be there in that way. I’m a blessed woman. So here we go!

Sunday, December 19, 2010


December 19, 2010

I've been feeling some relief the last few days. I think my UC flare has been dying down. Whew! So not only does that mean my rectal pain has (for the most part) subsided, it also means my bowel movements are no longer like a faucet has been turned on every time I go. Hydration is so hard when things get like that, which means I feel faint and completely exhausted too. When I'm not flaring, I actually have bowel movements that are pretty close to solid and so I'm able to stay hydrated fairly easily. My frequency of bowel movements has gone down now that my flare has subsided too. Instead of getting up every hour and a half to two hours at night when flaring, I am able to get up once or twice a night. I can live with that.

I'm very much looking forward to my January 5th surgery consultation so I can move forward with having the rest of the UC removed from me. I'm also ever so grateful for the reprieve from pain. Thank you God.