The rest of the story...

Hi everyone! Sorry I left you hanging with the happenings at Mayo! I came back home to a hectic week! Things ended well at Mayo. I finally had my MRI and met with Dr. Aggarwal. He was pretty amazed with all of my results. He found no infection, what they thought was a new fistula was not a fistula. He did say that my colon was inflamed, which was not the case at the time of the last surgery...which means that the Crohn's Disease is flaring. He was still thinking a permanent disconnect was the way to go. They want to see me mid to late June for a re-assessment. So, we got the go ahead to leave Wednesday afternoon, and leave we did. Dad and I drove straight through and got in our own beds around 1:30 Thursday morning...totally worth it! Since I came home I've been doing great. My Crohn's symptoms are the best they've been since I was diagnosed...with the exception of the time I had the stoma. Dr. Aggarwal is pleased and I think a bit amazed. Prayer worked for me. What an amazing experience. I have some pretty fantastic people in my life. Many of you know that while I was gone, Robin and Mom hosted our annual mini convention at On the Pot. That awesome group of people put together an $800 gift to help cover our trip to Mayo. I cannot properly express my appreciation for the gift. What an amazing blessing. Thanks to all of you for your wonderful thoughts and prayers. I love you all!

Julie

Good day at Mayo...

Hi everyone! Well, yesterda was a good day all in all. I had to start out peeing in a cup...can I just say...I cannot do it...for real. However, I finally collected my specimen and turned the sucker in. I also had do do a blood draw...which, apparently, clotted, so I got to enjoy that again. Next it was off to the CT Scan. They did a scan of my abdomen to look at the fluid pockets that had formed. They were really concerned about infection. When the doctor did the scan, the deeper of the two pockets was gone...wahoo...prayer so works. The second pocket, which was just below the skin was still there. He drained 60 ccs of fluid and said it looked like post-op fluid with no idication of infection. The only bummer to the whole thing was that the person ahead of me took much longer than expected and I missed my MRI. I talked to Dr. Aggarwal this evening...he called me...how cool is that? He said that since they did not put in a drain, they would not need to do the test in the morning. Sooooo...they currently have my MRI scheduled for 5:00pm...less than convenient. Dr. A wants me to go over first thing in the morning and see if they can get me in earlier in the day. That way, I can try to meet with him tomorrow afternoon to look at results. Our last task will be to see Dr. Dozois...my hot surgeon. He will do an exam under anesthesia to look at a possible fistula...blah. So, keep praying my friends. It is definitely working! I'll keep you posted. Love to you all! Julie

Back at Mayo

Hi Friends! It's Julie writing this time...just Dad and I on this trip. We ended up coming back to the Mayo Clinic yesterday after Dr. Ellis found some abnormal pockets of fluid in my abdomen. Today, we did blood work, urine samples, and a very uncomfortable enema x-ray to examine the issues more thoroughly. Dad and I met with Dr. Aggarwal and Dr. Dozios this afternoon hoping for some good news. Unfortunately, that did not come. I have two abcesses in my abdomen about 3 centimeters each. I also have some fluid build up under my scar from the last surgery. From some of the other indicators, they are certain that my Crohn's Disease is already flaring again. That is not at all what they had hoped to see, especially so soon after the last surgery. So, I will go in Monday to have fluids drained, do an MRI, and possibly have some surgery to insert a seton into another fistula that has formed. We will assess more then. We were also told that, most likely, in a few weeks when the infection is cleared up, they will do a permanent diversion of my colon and I will have a permanent external bag. That was really overwhelming at first...it wasn't even on my radar as a possibility. However, after talking to Robin, Mom, Dad and most importantly, God, I know that this is not the worst possible thing that could happen to me. I know, for a fact, that when I had it before, my quality of life was excellent. I also know that right now, it is not. I have the best doctors and nurses on my side both here and at home, and I trust them very much. I know we can handle whatever this disease throws at us. God is good...all the time and so are all of the amazing friends and family I have supporting me. Dad and I can feel all of your love and prayers. Thanks so much to each of you.

HOME!!!

We met with Dr. Dozis' nurse Julie this morning and she pulled Julie's drain out at about 9:00am, and we walked in our front door at about 9:00pm! We were thinking about breaking up the trip into two days, but Julie was feeling really good and we REALLY wanted to be home in our own beds tonight! Wonderful to be home, see the parents and greet our furry friends. Thanks so much for all the text messages, facebook posts, and phone calls! We have wonderful friends and family!

Sprung

So apparently Julie is a miraculous little healer, and Dr. Dozois gave us the green light to spring her out of the hospital today. So we are back in the hotel just hanging out, waiting for the Top Chef finale. We have to stick around until Friday morning when they will take her drain out, and then we will be headed home! Woot Woot! Can't wait to see all our friends and fam. and of course the furry babies!

Good Morning!

Dr. Dozois' team was just in with our buddy Julie. She's Dr. Dozois' right hand gal. They are very happy with Julie's progress, she's farting by the way, and have told the nurses they can take out Julie's catheter, we can walk as much as she can stand, and she may get sprung from the hospital as early as tomorrow! They will want us to hang around town one more day, but as Julie said, a hotel room is much cheaper than a hospital one! Woot Woot!

advanced recovery...and the ghetto.

Since last check in, they have moved Julie to her own room, and she is doing really well. She sat up in a chair tonight, had a little bit of dinner, and was even about to go for a short stroll with the nurses as I was leaving the hospital. I'm sure I'll hear all about that in the morning.
Julie was happy to learn that she and Dr. Dozois could still be besties, since he did in fact do her ileostomy take down, but was less than impressed with her very small but private room. Last time we were here, her room was in the newly renovated part of the floor. This time we are in one of the older areas of the hospital and not quite as swank. No sofa, no shower in the room. So Julie has decided we are staying in the ghetto.
Also, they have a new plan for post surgery patients call "advanced recovery". They have found that it is better to try to avoid narcotics and have patients begin to eat regular foods as soon as they can tolerate them after surgery. So while, Julie was very happy to get a little baked mac and cheese and a chocolate shake for dinner, she was a little bummed that there was no morphine pump in her future. That's my sister, the post surgical drug seeker! But since the pain has been under control with oral and regular iv pain meds, she will just have to miss out on the narcotic buzz. :)
More in the A.M. friends, I'm headed for bed.

Surgery... Check!

Just went down to the first floor to meet with the hunky Dr. Dozois. Surgery went well! He saw no evidence of a fistula which is great because that made it possible for him to go ahead and do the ileostomy take down. Soon and very soon, Julie will be able to poo like the rest of us again! She had a hernia because of the ileostomy and they repaired it with her own tissue instead of having to use mesh. Being typical Dr. Dozois, he said that it wasn't the healthiest bowel he had ever seen, but he thought it was as good as it could get with all the current treatments. So we are calling that success and even victory!!
Julie will be in recovery for a couple more hours, and then we will have a real room and maybe soon have some idea how long we will be here.

Surgery on 3-29

We called the magic Mayo number and Julie is scheduled to check in at 8:30 in the AM. We had good dinner tonight, after fasting all day Julie was more than ready for some munching! Say a prayer for her in the morning will you?

A day of tests ends well!

Well today was a fun and crazy adventure! Julie spent most of the day in various parts of the hospital getting poked, prodded, scanned, and checked, while I hung out in waiting rooms watching the sea of people who come to the Mayo clinic.

Okay, Julie's stuff first, and then I'll tell you about the fun I saw... She did blood work, an MRI with contrast, a colonoscopy and then had appointments with the goofy Dr. Agerwall, and the fabulously beautiful Dr. Dozois (DOHS-WA). Dr. Agerwall told us that ALL the tests looked really good and he was happy with Julie's steady weight loss. Dr. Dozois was also happy with the tests and was ready to go ahead and schedule surgery for tomorrow. He as always was gaurded and told Julie that it is possible she will wake up from surgery and still have a stoma, if he feels like everything hasn't healed properly, but most likely he will do the takedown tomorrow. Julie told him, that if she still had a stoma when she woke up, they wouldn't be as good of friends anymore. He told her, if she still had a stoma, he would send a member of his team to tell her! We love Dr. Dozois, and even though he tends to be gaurdedly opptomistic about everything, it's kind of good because he prepares us for all the options. We have to call tonight after 8:30 to find out when surgery will be, I'll let you know when we know.

Okay, now about the waiting rooms. Waiting rooms here are awesome. Every little table has plug ins for your laptop and there is free WIFI through out the building. I checked e-mail, facebook, and watched a whole movie while Julie was in her colonoscopy. Mostly, though, I watched people. Here are some of my favorites:
1. A nurse came out and paged a man named Ronald Dickmeyer. pffffftttt.... I couldn't help it, I had to laugh, and so did others in the waiting room.
2. Saw a woman in a burqa with a full veil complete with eye holes go in for a colonoscopy. I was trying to picture in my mind just how violating that must seem to her. I think it would be more so, than for someone dressed like me. If you never show your face in public, can you imagine?
3. A woman who was probably 75 years old, dressed head to toe in Harley Davidson wear. Literally every piece of clothing had the logo and was skin tight! Fabulous.

We are now back in the hotel room, chillin' out. We're going to watch some tv, and maybe work on a puzzle. Once we know surgery time, I'll post it! Thanks for all the prayers friends!

traveling, a giant spatula, and spam

Well today was a pretty low key day. We stopped in Austin, MN to check out the SPAM museum. Praise Jesus we did not have to eat any SPAM but we did enjoy the I heart SPAM movie and all the fun kitchy displays. We were absolutely planning to buy a snow globe in the SPAM store, but we thought $16 was a little steep for our cheap snowglobe collection. Instead we took pictures! Enjoy!

Tomorrow morning we start bright and early at 7:10 with blood work, and will have tests and appointments pretty much all day. We should know if surgery is in Julie's future by late afternoon, so I will update when we know more! Sleep well friends and I'll catch you on the flipside.

Next adventure

Hello Friends-
Long time no chat huh? Well we're heading back to Mayo today. Julie and I have decided to make it a two day trip, since she has a billion appointments on Monday. Our biggest excitement for the drive up, is a planned stop at the SPAM Museum. We have driven past it a couple of times, and Julie has decided it's a must see!

Once we get to Rochester, Julie will have appointments and tests all day Monday, and by 4:30 or 5:00 we should know if they will do her Ileostomy take down surgery on Tuesday. If they say yes, we will be in Rochester for 3 to 5 more days. If they say let's wait, we will head back home. No matter what they decide, Julie knows it will be the right choice, but we are keeping our fingers crossed that they say yes! I'll keep you posted.