One week after take down surgery

Well we have so much to be thankful for this Thanksgiving. Mackenzie has completed all three surgeries and is on her way to having this journey all behind her. She has married the love of her life and has given us the most amazing son in law anyone could ask for. We love you Mason! Also we have our grandson Dominic, who not only has brought joy to our lives, but has been a wonderful distraction throughout this journey of surgeries. He has always put a smile on Aunt Kenzie's face. 

We are also so very thankful for the many connections we have made through this blog. So many people out there that we haven't personally met, but have been there for us. 

We are also so thankful for the support of wonderful family and friends. You have gotten us through. ......thank you.

Kenz is doing really well one week past her take down surgery. She is experiencing all normal recovery feelings. Even though some things are uncomfortable, it is all to be expected after take down.  

We said good bye to Colleen (that is what she named her stoma) and officially hello to the jpouch. 

Woohoo.... God is good!

I will be slowing down the blog for now. I may post occasionally for updates for those of you wanting to know how things are progressing.

 If anyone would like to contact myself or Mackenzie please feel free to email us anytime.

Rhonda: rrtuch@gmail.com

Mackenzie: Mackenzie.tuchrelo@gmail.com

These pics were taken just before she went into each surgery. From "moon face" to getting her health back. WOW!

4th day after take down

Kenz is still on the limited bridge diet today.  Tomorrow she can start the low residue diet. She is extremely tired but I think once she can add some chicken into some of her meals she might have more energy.  She got out of the house twice today. But both times really tired her out. I see her improving every single day!!! 

She sure does love snuggling Boosh!

3rd day after take down surgery

Mackenzie came home from the hospital today. She took a shower and got settled in at home. She is doing great.  At about 8:00 tonight the dreaded butt burn set in. She is experiencing intense gas pain but does get some relief with the Gasx. She said the butt burn is so uncomfortable. We ordered special cream called Calmoseptine at the pharmacy. I hope it doesn't last too long. 

So glad she is home and done with surgeries! 

2nd day after take down surgery

Kenz will get to go home tomorrow. She has been able to pass gas and has pooped in the potty!! Lol. Honestly it has been so funny how we are all so excited for the first poop, just like she was just learning to use the potty. Finding humor during this journey has been a saving grace. She said it looked like little rabbit poop!

She has been off her IV today and started the "bridge diet." This consists of cream based soup broth, scrambled eggs, apple sauce and pasta.  

The gas pain does really get intense and taking gas x and some pain meds are getting her through. She is able to get herself up and walk around. She showered and really only complains about how tired she is and the gas pains. Other than that, things are going smoothly.

I think tonight I'm going to post a picture of Kenz on her wedding day. She and Mason had to change their wedding date due to her surgeries. They still wanted to have the wedding in 2014 so they decided to get married after the jpouch construction surgery but before this take down. She had a very rough time during that time with some blockages dealing with extreme stomach pain nausea and vomiting. She was in rough shape even on her wedding day. However she pulled together everything she could to get through the day. This disease truly is a hidden disease. Everyone saying, "You don't look sick."  Well all you fellow UCers know how that is. Here is a picture of my beautiful daughter who looks amazing and pushed through a very rough day on her wedding day. I know I keep saying it but.....she is one determined strong young women walking down the isle with her bag under her dress feeling like shit. I love her to pieces!

1st day after take down surgery

Nov. 22, 2014

Mackenzie slept well last night. Her blood pressure was pretty low during the night, but was higher in the morning when she got up to walk around. Today she started feeling the cramping they said she would get as the gas was passing through the intestine. It got pretty intense during the day. 

Last night she took one walking lap around the hospital wing, and today she took 5 more laps. Her surgeon came to visit her and told us how pleased she was with the surgery. Kenz has been sleepy all day. 

Finally at 8:30 tonight Kenz passed gas for the first time. Yippee we were all so excited!! This is one thing that has to happen in order for her to be discharged. The other thing of course, is to finally poop using the J pouch.  Just like when she first pooped in the potty, we will all be celebrating!!! 

Mason got here from Michigan at around 9:00 tonight. He has been in constant contact with us until he could get here.  He is now on overnight hospital duty.

 So I'm going to end this post with a picture of what her stoma site looks like now. They pack the hole with gauze, no stitches, it will heal from the inside out.

Goodnight, so very tired. 

Final surgery take down!

7:30 am

November 21, 2014 the take down, Mackenzie's last surgery. I can't believe it's finally here. What a long journey it has been. The recovery after her Second surgery in July has been one tough road. So glad we are at the point of take down!


8:55 am

The surgeon called to let us know her surgery was done and she felt it went perfectly.

10:00 am

I finally got to see her in the recovery room. She said her surgery site where the stoma was hurt very bad, but other than that she felt good. She is just groggy and nauseous.

11:00 am

Kenz got to her room and she is in the new wing again! 

Guess who came to visit Aunt Kenzie already!?!? He is a loyal visitor. He even brought the beautiful new Vera blanket.

2nd surgery 1 week post op

Well today marks the one week mark since this second surgery began.  I have to say it has been a much more difficult time than the first surgery.  Mackenzie has been fighting nausea since day one.  Two nights ago she got sick 6 times in the night. Last night was a little better.  Yesterday she had leakage from her ostomy and that caused some skin irritation. She attempted to change the bag on her own with me trying my best to help. It was difficult because of the rod. It was not a very nice experience that I won't go into details with.  Finally we made it happen. The pain all over is more intense.

The visiting nurse came to our house again today and made a call into the doctors office. We ended up going into see the surgeon today.  After checking her over, the doctor said she is starting to get dehydrated. They were able to tell by her heart rate and blood pressure. The good news is everything is healing right on target. She just needs to drink more and take Imodium to slow down her output. The best thing was the doctor took out the JP drain.  Kenz felt much better having that out. 

When we got home she decided to take the prescription pain meds but only half the dose. The doctor said because she is only taking Tylenol the pain she is feeling could be causing some of the nauseous feeling.

Well tonight she seems to be feeling better. I pray we have now turned a corner on this recovery.

Her dog Gala and my two boys are helping take very good care of her. 

2nd surgery day 5 post op Colleen grew up!

9:39 pm

Kenz ended up getting sick once in the night. Her nausea feeling lasted into the morning. 

 She is eating her low residue diet and she is able to keep it down.  So that is great news. Her pain level is staying at a level 5 but she doesn't want to take anything more than Tylenol.  She has to measure her drain and when it is less than 30ml in one day she can get the drain removed.  

The visiting nurse came today and will return again on Friday.  

So this part of the blog is for fellow UCers. It may get kinda gross for everyone else.  

After Mackenzie's first surgery she decided to name her stoma Colleen. The stoma is made from the end of her small intestine.  During this second surgery, they build the Jpouch out of the small intestine. So they use the part that was the stoma for the Jpouch. Her new stoma is higher up on the small intestine and has to be looped out and held out with a rod.  The rod will come out at her first post op appointment with the ileostomy nurse on Monday.  But for now the rod is supporting the loop. 

 I asked Kenz if she would give her stoma a new name since it was a different piece of her intestine. She said, "no I'm looking at it as if Colleen grew up"! Love her sense of humor. 

So here is a look at the loop ileostomy with the rod. Hope this is helpful to anyone heading into Jpouch construction surgery.

2nd surgery day 4 post op

11:12 pm

This is the first time I was able to write today.  We did finally make it home today. We are glad to be home, but over all, today was a tough day.

Mackenzie had extreme nausea in the night and in the morning.  There are two types of nausea with this surgery. The first kind is due to pain meds. That is not a concern. The second is if there is an obstruction in the intestine. So they really were not comfortable releasing us if there was a possibility of an obstruction.  There was no vomiting so that was making them lean towards a reaction to pain meds.

Every time someone came in Kenz kept saying she needed to go home.  So finally we convinced them to release her.  We got home at 2:00 pm.  Kenz had to come home with the JP drain bulb still draining out of her stomach.  She also made the decision to switch to taking Tylenol for pain because of the nausea.  This desicion makes her feel more pain but she said she will take the trade off.

Her stoma is having a lot more output than usual so she will start Imodium tomorrow to slow things down a bit.  She has to measure all liquids going in and all liquids going out.

Kenz has had a very emotional day. I think it's hard for her to feel the pain and be stuck inside recovering on a hot summer day.  Also she is missing Mason.

She had a therapy dog named Miracle in to visit her today before we left.

Her dog Gala was so excited when she got home and hasnt left her side!

2nd surgery day 3 post op

11:53 am

Mason had to head back to Michigan today. He left at 10:00am. 

Well she isn't going home today.  She is experiencing nausea.  Still very tired so they would like to keep her here another day. So we are hoping to get home tomorrow.  

3:03 pm

Kenz is resting and sleeping a lot today. The nausea is better this afternoon.

5:14 pm

Dr. Hriesik came to visit Kenz today around 4:30. She feels Kenz is doing good. Any concerns that we had she assured us it was all normal stuff going on. Kenz is now allowed to have mashed potatoes at dinner. That was exciting.

8:53pm

Since Mas had to head back to Michigan I will be spending the night with Kenz at the hospital. So we are watching cheesy girl TV.  I have to say this room is huge and very nice. I even have my own bed!

2nd surgery day 2 after surgery

7:19pm

Progress has been made today. Low grade fever gone, catheter out, no more IV. She took a shower today and has been doing a great job walking. Still not sure if she can go home tomorrow.

Mason is a great support and seems to be able to handle " for better or worse, in sickness and in health"!!!!

Tony, Marissa and Dominic do such a great job cheering Kenz up. Tonight they set up the room to play Mario cart.

2nd surgery day 1 after surgery

9:19 pm.

Well Kenz is sleeping well at night and most of the day. After surgery number 1 she didn't sleep at all day or night because of the high dose of prednisone. She is in more pain this time. There was some blood in her urine so they ran a UTI test but it came back negative. She has had a low grade fever all day but they are not concerned. They tell us that is very common. Her stoma is having output, so that is great news. Sometimes it can take awhile to wake back up.  She was told she had to get out of bed and walk three times today. She met that goal of walking, and each time she extended the walk. She is very determined. I admire her strength.

Dominic came to visit Aunt Kenzie!!!

2nd surgery today!

Today is the creation of the Jpouch.  We got to the hospital at 5:45 with surgery starting at 7:30. I was told the surgery was 7 hours however,  everyone that checks in with us is saying she is signed in for a 10 hour surgery. UGHHHHH!

CHECK BACK THROUGH THE DAY......

2:38 - Just spoke with Dr. She is very pleased with how everything went. We wont see Mackenzie for about an hour to two hours.

4:10 - Mason and I were able to peek in on her for a minute. She was sound asleep. She wont be out of recovery for another hour or so.

6:12 - finally in her room. She didnt get one of the new rooms this time. She is very sleepy.

7:06 - So her room is in the older section of the hospital. Last time she was in the brand new suites. After talking with my niece Amanda, who worked on this floor for 5 years, she encouraged me to request a room change and to explain they live in Michigan and this is where Mason will be staying while he is in town. Well.....a room is available and they will be switching her within the hour!!!!! Thank you Amanda!!!

9:55 - Kenz walked at about 9:35. What amazing strength. She is so very groggy still. Much more than the first surgery.  We are wondering if its because she was on prednisone for the last surgery.  Just our guess.

Six weeks after 1st surgery

Well, we are six weeks out from Mackenzie's colon removal.  She has been progressing wonderfully.  She met with the surgeon last week and everything's looks great. It won't be until May 16th that she is completely off prednisone. Therefore, her 2nd surgery won't be until the prednisone is totally out of her system.  She is thinking the end of June or beginning of July is when it will be.  Kenz's dr. is so amazing, she told her that when she decides to have a baby, she would be able to be in the delivery room and help deliver the baby and make sure the J pouch wouldn't get damaged. 

Mackenzie is officially moving to Michigan tomorrow and will only come home for Dr. Appointments and surgeries now. Oh, and of course for her wedding in September. Originally her wedding was set for July 11th, but because of the decision to remove her colon, she and Mason changed the date to September 19th. This will be after the second surgery but before her third take down surgery. 

I have mixed feelings about seeing her go. Of course I will miss her, but her leaving means she is on her way to getting her life back. She can finally officially live in her new home. I'm so thankful for how well she is doing. I admire her strength. 

One week after 1st surgery

I really can't believe one week ago today was surgery day. This past week has really flown by. When I look at how wonderful Kenz is doing today, it's hard to imagine where we were last week at this time. God has answered so many prayers. Thank you to everyone who has given us support through this phase. We couldn't have done it without family, friends, co-workers, and now, new social network friends.

I don't plan on posting again until after our post op with the surgeon.  Before I close tonight's post, I wanted to show you how far she has come in one week.  Just 7 days..............absolutely amazed,  one determined girl right there!!! I love you Mackenzie...........my Goo xoxoxo

 Thank you so very much, Rhonda

Day 6 after surgery! Words from Mackenzie

Hi everyone! This is Mackenzie posting today! 

First of all I want to send out a huge thank you to everyone for all of the love/support/prayers/calls/texts/visits/cards/flowers/care packages/etc. I can't tell you how much I appreciate it and how much it has helped me get through the start of this journey. I am truly blessed to have such wonderful people in my life <3

Today marks the 6th day since I had my colon removed and got to meet Colleen! I have to be honest and say that I feel GREAT! I still have a lot of soreness from the incisions but I can already feel my health improving by having this ulcerative colitis removed from my body! Like my Doctor said, "your colon is like a boyfriend who isn't treating you right and you need to dump him." This made me laugh, but dumping my colon was one of the best decisions I have ever made.

Every day since surgery I am getting better and feeling stronger. Also, Colleen and I are getting a lot more comfortable with each other (I might even miss her a little when she is gone, because she is taking very good care of me). Starting yesterday, my goal is to get out of the house at least once a day, even if it's just something quick.  Today mom took me to target to pick up a few things. Other than having to walk really slow, it was great!  It actually did tire me out a bit, but I'm glad I did it! 

I am on a mission to be myself again as soon as possible! To my fellow UCers who are going through this surgery or considering it.......if I can do it, I know you can too!

Again, thank you all so much for for helping me through this!

All the best, 

Mackenzie 

P.S. I want to thank my mom for creating this blog. It's been a great experience to share this story through her eyes for family/friends/fellow UCers. She truly is the best and I am so lucky to have her.

Day 5 after first surgery

9:15pm 

 Today Mackenzie and Mason went out, yes I said "out" to breakfast! I, being the nervous mom that I am, was afraid that she was going out too soon. When your child is 26, you can't really make them stay home, ugh!!! I have to say, she looked wonderful and so excited to get dressed and put on some make up and get out. She even had on jeans!  She looked amazing. 

When she got home it was time for Mason to head back to their new home in Michigan. Kenz was sad to see him leave.  She has a visiting nurse service that comes to check on her every few days. The nurse will come again tomorrow. She also has a couple post op appointments with  the ileostomy nurse and her surgeon. So for all those appointments she will be living here with mom and dad for awhile. Her goal is to get to Michigan to set up the house before she comes back here for the next surgery. The soonest she could have the second surgery is the beginning of June. 

Today Dominic came to visit Aunt Mackenzie.

Stomach + Stoma = Meet Colleen

When we originally started this blog, it was to give back to the people who have questions about Ulcerative Colitis. Maybe someone newly diagnosed or trying to get insight on J-pouch surgery. We found many answers from real people going through this. The connections we have made through social media is just amazing.  I have moms that are going through the same thing and we now have found each other and can support each other. Mackenzie has also found someone who is only 5 days ahead of her surgery. They are supporting eachother and going through recovery together.  What an amazing thing networking is.

So when family and friends were all asking if we would keep them posted, we thought maybe we should just invite everyone to our blog to keep everyone informed on how things are going.

Going through all of this has made us immune to a lot of sights and sounds. So some of you may not want to view these pics but they are for fellow UCer's who could really find them helpful. 

Day 3 after first surgery

10:40 am

We got the word today that Kenz will be going home this afternoon! She has an appointment with Marybeth the ileostomy nurse here at the hospital at 11:30 this morning. This will be the first time she actually takes off the bag and meets Colleen uncovered face to face. They will find what style fits her tummy best, this could take a few tries over the next few weeks.

Mason found a site that shows the da Vinci surgery robot. This is how Dr. Claudia Hriesik did Mackenzie's surgery. What amazing technology. Here is a link for anyone who is interested.

https://www.youtube.com/watch?v=VJ_3GJNz4fg

2:26 pm

We met Colleen. Nurse Marybeth came in and showed us how to care for her. She said Kenz has a beautiful stoma. I don't know what to think about that, kinda weird to hear. Anyway, we learned a lot and feel comfortable with everything. The visiting nurse will come to the house tomorrow. We are sitting in the room waiting for the discharge nurse.

7:11pm

Home at 4:30 and so excited. Mackenzie's dog Gala was so wonderful and gentle welcoming her home. Hopefully she can get a full nights sleep. Last night she slept from 9:30 - 3:00am and that was with a sleep medication. 

Mackenzie is so fortunate to have such a wonderful fiancé.  Mason has been by her side and so incredibly supportive. I have to say, after watching these two together, they truly are an amazing couple. I have watched them support each other through many obstacles but this one takes the cake!

So happy to be home. We are blessed

Day 2 after first surgery

4:46 pm

I arrived at the hospital at 1:45 today. Kenz had her grandma, aunt, dad and Mason at the hospital for her. So she was in good hands while I was gone. I was able to spend time with the dogs before I left. Her dog, Gala misses her so much. Mackenzie took her first shower at 3:00 and I was able to do her hair. 

I was able to sleep from 11-6 last night but unfortunately Kenz hasn't really slept for any great length of time yet. They say it's because of the prednisone. They may give her something tonight to help her sleep.  

10:46 pm

Kenz had a great afternoon and evening. Her first shower took place today. She ate meatloaf, mashed potatoes, cooked carrots, and Apple pie. She did all her walking she needed to do and seems to be moving at a faster pace. The nurse came in at 9:30 pm and gave her sleep medication so hopefully she will get a good nights sleep. I left her in Mason's care again tonight. It's hard leaving the hospital but I know He will take good care of her.

As I was leaving the hospital tonight, I saw this sign hanging on the wall stating that RGH is number one in the US for the robotic colon rectal surgeons. That made me smile!

ttfn

First day after 1st surgery

7:30am

 Last night Kenz did get up and walk. She did great! The nurses came in throughout the night to check in on her. They said things are going good. Her stoma is already doing its job and that is great they tell us. Sometimes it takes a while to get started. We have decided to name her stoma Colleen. It just feels like naming her makes us more excited to meet her.

3:15pm

Kenz has gotten up and walked twice today so far. She has to get up and walk 3 more times today.  Each time we see improvement.  She is following all the rules regardless of how hard it is. She is so determined to get her strength back and I feel I see her strength coming back every hour!  The OR nurse has visited twice and the nutrition specialist stopped by to talk about her diet while healing and with the ileostomy. She will be on a low residue diet, which she is very used to.

9:49pm

Just got home for the first time since we arrived at the hospital for surgery. It was hard to leave Kenz, but she is in good hands with Mason. She finished up her last walk tonight just before 9:00 and then I headed out. Each time she walks she adds a lap around the nurses station. So freakin proud of this girl. Tomorrow she gets drain tube and catheter out. She was able to eat creamy soup broth and pudding for dinner. 

So tired.......goodnight

Surgery Day

12:15pm

We got here at 5:45am, they took her back into the OR at 7:30am. We were told surgery will take 7and a half hours and then 2hours in recovery. At 8:49 a nurse came to tell me surgery actually started. Do I start counting the 7and a half hours from 7:30 or 8:49????? This waiting stinks:(

6:19pm

Long day. We finally got to be with her in the recovery room a little after 3:00pm. She then made it to her hospital room around 4:30. The wing of the hospital we are in just opened last Monday. It is beautiful!  

Mackenzie had her colon removed and her stoma made today. She did not have the j-pouch created because the tissue was too thick and bloated. The thickness and bloat was due to being on prednisone. Also being on a high dose of prednisone for a long time slows the healing process. The surgeon felt she would have better results with the j-pouch if it was done separately from the colon removal. They feel she is in great shape for a successful j-pouch construction. So that means she has 2 more surgeries to go. Mackenzie said " I want this done right, so if it takes longer, that's okay."

They tell me they will get her up to walk tonight!! Right now she is sleeping peacefully. 

 

Getting ready to go kick some UC butt!

Today has been long. We started out with an appointment to meet the ileostomy nurse. Kenz and the nurse decided where the best placement for the stoma would be. She had her lay down, stand, sit, and raise her knee up high. She then placed an "x" on the spot, put a clear piece of waterproof tape over it, and that was done. She was very helpful answering last minute questions we had. 

Mackenzie was only allowed to have clear liquids all day. At 6:00 she began prep as if she was going to have a colonoscopy.  She is a pro at prepping for that, so it was no big deal.

Last night was the first real anxiety filled night for Kenz. She was up at 2:00 am and ended up not able to sleep. I told her she should have come and got me because I was tossing and turning all night. The waiting for this surgery is really getting to us. 

Well we stopped at Grandma Tuch's house for a bit and then came home and shortly after, Tony, Marissa and Dominic came over and visited with us for the evening. Dominic is such a great distraction. Actually last night, Tony cooked Kenz a feast!!! He wanted her to eat like a queen since it was going to be the last time she could eat in awhile. He brought over and cooked 250 clams, Alaskan king crab legs, lobster tails, and filet mignon. It was unbelievable. It's awesome having a chef in the family.

Going to try and get some sleep tonight. We have to be at RGH at 5:45 am. Surgery should start around 7:30. 

Goodnight

One week before surgery

Well today marks the one week countdown until Mackenzie's surgery. I think the waiting is so hard. I feel like I just want to move on and get this done. Mackenzie's attitude has been amazing. Seeing her positive attitude has really given me strength. 

Today she took the 7 hour trip to Michigan to make it to two appointments tomorrow. One appointment is a two hour session she has to attend in order to sub in Michigan . The other is the closing of their new house!  She and Mason will be busy moving in, only to leave in separate directions on Sunday. Mason headed on a business trip and Kenzie heading back home to get ready for surgery. Mason will arrive on surgery day after his trip. It will be awhile before Kenzie can actually start living in their new home, but we plan on working hard to get her up and well enough to get her there for the next few months before her next surgery. 

I probably won't post again until next Monday ( day before surgery). She has appointments with the ileostomy nurse that day. 

Rhonda

Getting close to surgery

Hello, my name is Rhonda and two weeks ago we found out my daughter Mackenzie would have a colectomy due to severe ulcerative colitis. She was first diagnosed with UC in the fall of 2008 at age 21. Now at age of 26 she will take the journey to have her colon completely removed. The surgery will take place on March 4th at Rochester General Hospital. The colectomy takes place in 2 to 3 surgeries and anywhere from 6 to 12 months to complete. Once it is all over, she will no longer have ulcerative colitis. I wanted to take this opportunity to share this journey from a mom's perspective. After searching and reading all kinds of blogs, I haven't found one through the eyes of a mom. I'm sure there is one out there, I just haven't found it yet.