Dr. Dozois has decided to do a small out-patient procedure on Julie tomorrow morning, even though they are not going to do takedown surgery. One of the big issues that Julie had when we came to Mayo the first time were fistulas. She has had a drain in the biggest one since the last surgery, and Dr. Dozois wants to go in and check on that drain and fistula. He may take it out, he may replace it with something smaller, and he may do something else which I can't quite remember. Based on the results of this procedure, we will know when we head home. My guess is that we will head sometime tomorrow, but I will keep you posted.
A couple of people have said they weren't able to post comments on the blog. I tried to change some settings so that you can post. I hope it works. Love you all, and thanks for the prayers!
Tuesday, October 12, 2010
Good but slightly sucky news.
Well here's the poop. We met with Dr. Aggarwal this morning. He had all the test results and gave us good but not totally perfect news. He said that the treatments Julie has been doing are working, but have not totally healed up the inflammation. Soooo... they will not be doing surgery this week. We will come back home, they will double Julie's dosage of Remicade and we will wait 6 more months for her colon to heal. The good part: things ARE healing and Julie is responding to drug therapy. The sucky part: 6 more months of illeostomy fun. But hey, it could be a lot worse. We have one more appointment at 4:00 today with the surgeon, (he may take out a drain. woo hoo) and will spend the night tonight and then as long as the surgeon doesn't tell us something different will head home tomorrow. I'll keep you posted if anything changes.
Monday, October 11, 2010
A Pooscopy and grape flavored MRI
Well today was a day of tests for Julie. She started bright and early with blood work at 6:30 am and then moved on to a colonoscopy (we've renamed it a poooscopy). Then we were home for a short nap, and off to an MRI. Julie had to drink some stuff that she said was about the consistency of whole milk and tasted a liitle like grape Kool-Aid. Then she spent about two hours in a little tube. When she was done, she was very excited to get to eat food, and we were off for dinner and scouting around our home away from home.
We have a two bedroom, two bathroom apartment with a kitchen this time around. It's really nice to have plenty of space, and the option of cooking a few meals. We are just a block from the Mayo buildings and are connected by skyways to just about everything in Rochester. Right next door is a mall and Barnes and Noble, and downstairs is a lovely little shoe store. Could our location be any better? I think not!
Dad has been taking lots of pictures and we will try to get some of them posted in the next couple of days. We spent yesterday with our buddy Marti and her family in Wausau, WI. She took us to the Dells and then to visit her studio in its brand new location. It looks fabulous and we got to spend a little time painting in her store. Such fun to be the customer in someone else's place. I will say though, it's difficult not to check on customers, even in someone else's shop! Thanks Marti, Mark, Max, and Liam for showing us a good time!
Tomorrow, Julie has X-rays in the morning and then appoinments with her doctors in the afternoon. Please pray hard for good news from the doctors. As we get closer and closer, it's nerve wracking to wonder if they are in fact going to do the take down surgery on Wednesday. We really hope all test results are good, and we can just get on with it! Thanks for all the prayers and support. You guys are fabulous. Also, a big thanks to the girls taking care of the pottery studio while we are gone. Par for the course, we had a little computer drama on Sunday, thanks to Amy, Taylor and Envision computers we are back up and running and ready for Tuesday. woo Hoo!
We have a two bedroom, two bathroom apartment with a kitchen this time around. It's really nice to have plenty of space, and the option of cooking a few meals. We are just a block from the Mayo buildings and are connected by skyways to just about everything in Rochester. Right next door is a mall and Barnes and Noble, and downstairs is a lovely little shoe store. Could our location be any better? I think not!
Dad has been taking lots of pictures and we will try to get some of them posted in the next couple of days. We spent yesterday with our buddy Marti and her family in Wausau, WI. She took us to the Dells and then to visit her studio in its brand new location. It looks fabulous and we got to spend a little time painting in her store. Such fun to be the customer in someone else's place. I will say though, it's difficult not to check on customers, even in someone else's shop! Thanks Marti, Mark, Max, and Liam for showing us a good time!
Tomorrow, Julie has X-rays in the morning and then appoinments with her doctors in the afternoon. Please pray hard for good news from the doctors. As we get closer and closer, it's nerve wracking to wonder if they are in fact going to do the take down surgery on Wednesday. We really hope all test results are good, and we can just get on with it! Thanks for all the prayers and support. You guys are fabulous. Also, a big thanks to the girls taking care of the pottery studio while we are gone. Par for the course, we had a little computer drama on Sunday, thanks to Amy, Taylor and Envision computers we are back up and running and ready for Tuesday. woo Hoo!
Saturday, October 9, 2010
On the Road Again
Well kids it's been 5 months and it's time to go back to Mayo Clinic to check in with doctors, and hopefully do take down surgery and get rid of Julie's illeostomy. Here's a quick recap of what's been going on since the last blog post.
When we left Mayo they had done a temporary illeostomy that would let Julie's colon rest for several months in hope that it would repair the problems and put Julie's Crohns into remission. The illeostomy required Julie to wear an ostomy bag that was adhesive to her skin. If you know Julie, you know that she has about the most sensitive skin in the whole world and she if very jealous of anyone who gets to be sporty fresh, or have clothes that smell like spring rain or anything else for that matter. Sooooo... her skin was not a big fan of the combination of an adhesive patch and 100+ degree days. She ended up with an infection around her stoma and some skin breakdown, which landed her with a twice daily trip to infusion therapy at the hospital so take IV antibiotics. Since she's on Remicade which messes with your immune system, they wanted to attack with the big guns just to be safe. Once the infection was cleared up and our friends the stoma nurses at Mayo came up with a non-adhesive plan, things have been pretty smooth sailing. She has had no symptoms and all blood work has been excellent. So right at the moment we are feeling like the chances of take down surgery on Wednesday are pretty promising.
They will do a colonoscopy and a few zillion other test on Monday and Tuesday just to make sure that we are ready, and if all looks good they will do surgery on Wednesday. Julie has an appointment with her surgeon and gastro guy late Tuesday afternoon and we will get the yay or ney then. If they do the surgery she will be in the hospital for between 3 and 7 days, just depending on when she poos. So for now, we would appreciate prayers that surgery is a go, and then later pray for poo. Boy, aren't you glad you are friends with our family. You get to pray for all kinds of fun stuff!
In the meantime, we have been doing a little sight seeing today. Checked out the bridges of Madison County in Iowa. Dad of course took lots of pictures, we'll post later. Tonight we are headed to Wausau, WI to see our buddy Marti. She owns a pottery studio called Clay Corner Studio. We are excited to see her and her shop. Will spend the day tomorrow in Wausau and then head to Rochester in the evening. Julie's first appointment is for blood work at 6:40am. Woo! Nothing like getting your blood drawn first thing in the morning!
I'll keep you posted as stuff happens here.
Love to all,
Robin
When we left Mayo they had done a temporary illeostomy that would let Julie's colon rest for several months in hope that it would repair the problems and put Julie's Crohns into remission. The illeostomy required Julie to wear an ostomy bag that was adhesive to her skin. If you know Julie, you know that she has about the most sensitive skin in the whole world and she if very jealous of anyone who gets to be sporty fresh, or have clothes that smell like spring rain or anything else for that matter. Sooooo... her skin was not a big fan of the combination of an adhesive patch and 100+ degree days. She ended up with an infection around her stoma and some skin breakdown, which landed her with a twice daily trip to infusion therapy at the hospital so take IV antibiotics. Since she's on Remicade which messes with your immune system, they wanted to attack with the big guns just to be safe. Once the infection was cleared up and our friends the stoma nurses at Mayo came up with a non-adhesive plan, things have been pretty smooth sailing. She has had no symptoms and all blood work has been excellent. So right at the moment we are feeling like the chances of take down surgery on Wednesday are pretty promising.
They will do a colonoscopy and a few zillion other test on Monday and Tuesday just to make sure that we are ready, and if all looks good they will do surgery on Wednesday. Julie has an appointment with her surgeon and gastro guy late Tuesday afternoon and we will get the yay or ney then. If they do the surgery she will be in the hospital for between 3 and 7 days, just depending on when she poos. So for now, we would appreciate prayers that surgery is a go, and then later pray for poo. Boy, aren't you glad you are friends with our family. You get to pray for all kinds of fun stuff!
In the meantime, we have been doing a little sight seeing today. Checked out the bridges of Madison County in Iowa. Dad of course took lots of pictures, we'll post later. Tonight we are headed to Wausau, WI to see our buddy Marti. She owns a pottery studio called Clay Corner Studio. We are excited to see her and her shop. Will spend the day tomorrow in Wausau and then head to Rochester in the evening. Julie's first appointment is for blood work at 6:40am. Woo! Nothing like getting your blood drawn first thing in the morning!
I'll keep you posted as stuff happens here.
Love to all,
Robin
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