Trying to Get Back in a Routine!

How is it April already?

 This month was supposed to be my first month back to work after my surgery!  I had all these grandiose plans of getting back into a routine and just moving forward, we all know how well that has been working! 

 

I went back to work for two weeks and then ended up in the hospital for another week which mentally set me back and we had to keep moving forward at this point.  I went in for another surgery for them to clean the wound and then was discharged thankfully and able to return home.

 

So I decided to start again this week and we were going to get back to a routine.  Luckily I survived this week despite some saddening news at this point in my recovery.  So I have been meeting with my regular surgeon every week and he told me that at this point he is seeing limited healing in the wound, the wound looks good but it is not healing as well as it should be.  Last week he talked to me about meeting with a plastic surgeon.  He said that they were talking about removing muscle from my leg and then filling the wound with that muscle.  This is how it has been described to me thus far.  I am meeting with the plastic surgeon Thursday of this week.  My doctor told me that I would be looking at another 3-4 day hospital say.  As Censie says we all know how my body responds so we will plan a week.  I have mixed emotions about this on one hand it would heal the wound then the other hand it is another surgery and another hospital stay.  You know what is another hospital stay when you have spent 26 days in the hospital over the past four months!!!

 

Luckily this week I got to be home and was able to go to Jude's first soccer practice.  He had a great time and did so well for one of the youngest kids out there.  Now he is not the smallest kid out there but is one of the youngest.  It was nice to be able to get out and play with him, however running for the first time with my ileostomy was a little weird and is going to take some getting used to. 

 

 

Then on Saturday after my daily visit to the nurse, yes those are still going on I have no idea when it is going to ever end!  We went and did Easter Egg Scramble.  Jude had fun even though we only came home with one Twizzler and one empty egg.  He did really good being patient.  This is one of my favorite pictures!

 

 

Then on Sunday we went to church and then hunted for more Easter Eggs.  We had a great time playing and eating candy throughout the day, whoops daddy has a sweet tooth.  Then later in the evening he crashed, I got to cuddle with my little boy, not something that happens very often any more.  It was nice being able to have a day where I didn't have to worry about my ileostomy or having to go the doctor.

 

I am really hoping that I will be able to have more days like this but I will know more on Thursday.  I will make sure to keep everyone up to date on what is going on and if I am going to have to have another surgery.  Thank you all!



The Hospital Must Have Missed Me!

I'M Back In The Hospital!

 

 

As many of you know I have been dealing with the recover from my surgery for the past two months,  This has required me to have a nurse come to my house, and since I have been at work I have had to go into Kaiser every single day to have a wound packed and changed.  There have been ongoing issues.  Most of these issues have been from the nurses not knowing how to pack a wound and doing it incorrectly.

 

My nurse on Saturday packed it wrong and put too much packing in the wound.  With there being too much packing in the wound, the bacteria did not get a chance to come out it just sat there in the wound and they think the bacteria grew into the wound.  So Monday I started to feel very sick and had a fever, chills, and aches.  My doctor then wanted me to come in and we did a CT Scan and blood tests.  After all of those tests he still could not figure out what was going wrong with me exactly so I got admitted to the hospital. 

 

 

When they admitted me they hooked me up to IV antibiotics throughout the day.  Sadly this did not seem to work.  They were pumping the antibiotics but my fever still stuck around and even got worse.  It got all the way up to 102.6 this was not good and I was getting irritated, scared and nervous. 

 

 

Today, Wednesday Morning, my surgeon took me down to surgery and cut the wound open more and then cleaned it out.  Basically he power washed my wound.  He thinks that he was able to find out where the infection was coming from so that is good.  Since I have been back in my room I have feel like my fever was gone but we will just have to wait and see.  I have been here at the hospital since Monday night and looks like I am not going home till Thursday at the earliest.  I think that we are ready to be somewhat normal and not have to deal with all these illnesses.  This one has taken its emotional toll on me and I have had a few breakdowns.  Luckily I have had many people to lean on.  I appreciate every one's support and I will work on keeping up with my blog more and making sure that you all have the most updated information.  Thank you again for everything. 

 



Recovery? This Is Supposed To Be Easy Right?

Recovery?

 

So I am finally getting around to writing this post.  I don't know why but this has been one of the hardest posts to write.  I think that it is because I am having to go through everything again and think about all that I went through in the hospital. 

 

Hopefully you have already read my post http://ibddaddyandme.blogspot.com/2013/02/proctocolectomy-whats-that.html about my proctocolectemy surgery.  The surgery was only supposed to last 6-7 hours, but I can never do anything as planned so I went for 9-10 hours.  After the surgery the fun began, well I guess from what I can remember.  They had to place me in ICU right after my surgery because my heart rate was going sky high.  Now this is all information that has been told to me because I DON'T REMEMBER ANY OF IT!!!!

 

So I spent the night in ICU and then the next day as well.  Censie has told me that my mother came in and was talking to me and I asked her what time it was. She told me that it was noon and I told her that People's Court was on, how did I know that and how do I not remember watching People's Court in the ICU.  The only thing that I really remember about ICU was that they finally got me a normal room.  The only problem was I was on an ICU bed so I had to move beds, remember I had only been out of surgery for about 24 hours.  Trust me there were plenty of choice words that were said while we were moving from bed to bed.

 

 

So I finally got up to my normal room and was trying to get going on everything.  The next day I started on clear liquids and was up trying to move and walk  My parents were impressed with how far I was walking right after surgery.  I thought wow we are doing well and we are going to have a smooth road ahead with this recovery, stupid brain!  I did not have that smooth road ahead sadly.  Saturday I was so excited because my kiddos were coming up to see me for the first time, after not seeing them since Wednesday morning this was going to be awesome!  Once again nothing can go as planned.  I had been working on eating clear liquid, Jude had brought me some balloons to make me feel better.  Luckily he was distracted because the clear liquids did not sit well.  I asked for a bucket but sadly no one could find one in time and I vomited all over myself. 

 

So sadly at this point we had to rush Jude out of the room at that point so I could get cleaned up and he had to go home.  Then later in the evening the right side of my face started to swell up.  So they were concerned with an infection or an abscess in my face.  All great things to think about while sitting in the hospital.  So they then had to take me down for a CT Scan on my face.  This was all fine I wanted to see what was going on but again had to change beds, and then when they were bringing me back they took me to the wrong room I had to remind them what room I was in!  So luckily it was not the scary things that we had been talking about but my saliva gland shut down, come on can I catch a break.  So at this point I was running a pretty high fever kept feeling sick to my stomach and felt pretty horrible.  I remember my mom sitting by my bed until almost midnight just holding my hand because I felt so sick.

 

So now we are to Sunday, see what I am talking about I had a great time.  Sunday was a sad day because my parents were leaving to head back home that day.  I continued to try and get up and walk so that I could do as much as possible and hopefully be able to go home as soon as possible.  The problem was that every time that I would eat something I would be sick to my stomach.  The had been giving me antibiotics as well to help with the swelling in my face and trying to get the saliva gland to start working as well.  I was told by my doctor that with these types of surgeries that the small intestine goes to sleep and has to wake up to start processing the fluids into my bag.  They were thinking that mine small intestine was still asleep, so again got up walking trying to make it wake up and start working.

 

Monday then came and I continued to try and eat items and continued to try and walk.  I was trying to be the model patient and was trying to do everything I could to make this work.  The doctors talked to me about putting in an NG tube, which is a tube that goes in through your nose and sucks all the fluid out of your stomach, fun I know but we decided not to do that yet.  However I continued to vomit and get sick to my stomach on Monday.  So then came Tuesday, I had a very small say in it but we decided to put the NG Tube in.  If you have never had an NG Tube placed please pray that you never have to have it done.  This was an experience that I never wanted to have and pray I never have to again.  So while you are awake you have a tube placed down your nose and you have to keep trying to swallow while the keep pushing.  So the problem with this is that I had a ton of fluid built up on my stomach from the prior two days with eating and drinking fluid.  So as you can imagine fluid on your stomach and being gagged does not work out well.  I feel extremely sorry for the two nurses, because I vomited twice all over them!  This was a little embarrassing.  They got it in luckily and started taking the fluid off, I felt a ton better but still shocked that this took place. 

 

So I have never shared this picture I hated it but you can see the fun of the NG tube and also the swelling in my face.

 

So the problem with an NG Tube is that you do not get to eat or drink anything while it is in.  So from Tuesday to Saturday it was pretty much the same thing. Sitting around, napping, visiting, trying to walk as much as possible, and not thinking about eating or drinking.  I was lucky though the did give me a wet washcloth to wipe the inside of my mouth out because it was so dry but they would take it away right away so that I didn't suck the water out of it.  So with having this NG Tube put in I had a PICC Line put in which is an IV but goes into a Large Vein in my chest.  The reason that this was put in was because they then gave me what they call TPN, which as my nurses tried to tell me is steak in bag.  It gave me all the nutrition that I needed. 

 

Luckily they then did allow me to start eating lemon drops so that the sour would hopefully help my saliva gland would hopefully start working.  So then they turned off the NG tube and I was allowed to start drinking items again and the best part was that my stoma started producing and my Ostomy was working!  This was awesome news because finally the whole reason we did the surgery was beginning to work!  So then on Saturday they took the NG Tube out, this was not fun either.  I got very little warning they just took the tape off and then pulled, I could not believe what just happened to me but was so thankful to have it out.  I then started eating food and then by Monday I was getting discharged from the hospital.  I am amazed at how much the NG Tube helped my healing and if I had known it was going to do that then I would have done it sooner.    So this is my story of my hospital stay but in the end it worked out well and I was able to come home with "Gustav" the stoma.  Thank you for taking the time to read this as well as every one's ongoing support!

Proctocolectomy What's That?

PROCTOCOLECTOMY?!?!?!

 

So I know that I have been gone for a while but I am still trying to heal and get going on my feet again.  So I thought that I would try and get this post going through.  Many people have asked what exactly I had done.  I had a total proctocolectomy, that probably doesn't mean much to you but here is the description from www.webmd.com

 

 

In proctocolectomy, the large intestine and rectum are removed, leaving the lower end of the small intestine (the ileum). The doctor sews the anus closed and makes a small opening called a stoma in the skin of the lower abdomen. The surgical procedure to create the stoma (or any other artificial opening) is called an ostomy.

 

The ileum is connected to the stoma, creating an opening to the outside of the body. The surgery that creates the opening to the intestine is called an ileostomy.

Stool empties into a small plastic pouch called an ostomy bag that is applied to the skin around the stoma. You have to empty the bag several times a day.

So as you can tell they attacked me from both my stomach and also my bottom in a polite way to say it.  It has been a major change for my family and I and I am still trying to recover, yes even over a month post surgery I am still having to heal.  I will talk more about my hospital stay and all the excitement that came with that in another post.  I hope to get back into posting on a more regular basis.  Thanks for reading!

I Am Scared!!!

I must admit at this point I am scared! 

 

 

 

Today is Monday January 7th, and on Wednesday January 9th I will be going in for a total proctocolectomy.  This is a major surgery, I have been told that the surgery will last about 6 to 7 hours. 

 

I am very excited to be able to get my life back and no longer deal with Ulcerative Colitis.  I am ready to start healing and moving forward but I am scared about the surgery.  This is going to be a major life change and I know it is going to be a difficult road ahead but I just need to get through the surgery.

 

I will be keeping everyone up to date from the hospital after I am done, they are telling me that I am going to be in the hospital for 7-10 days.  I will have my computer there with me because I am going to need some connection to the outside world.  I will be providing all of my IBD companions about the surgery and the recover from beginning to end so that if someone else is going through the surgery hopefully I can answer some questions.  I know that all the information that I have read on line helped me so much, so I am hoping to return the favor to someone else. 

 

Thank you again for everyone who has supported IBD, Daddy and Me! as we have gone through this journey together.  Thank you again!

Jeremy

Seriously?!?!?!?!?!

DAMN YOU ULCERATIVE COLITIS!!!!

 

So I made it out of the hospital through Christmas!  I was able to be there in the morning and see Jude's face as he opened his presents and then the awe and wonder of Santa and his fish tank.  I am thankful for that moment.  Sadly though I didn't make it long past that.

 

We were able to go get more fish for his fish tank last night, you know Santa told me he could go get more fish, and we got them all set up and they are doing well.  However 20 days after being discharged from the hospital I am back here again.  I had been struggling off and on since being discharged but was looking forward to having my surgery consult on the 2nd.  I started bleeding again and having a lot of urgency, which led to me having two accidents.  Yes that is where we are at, I have no control of my body which sucks ass literally! 

 

They told me that they felt that it was the best idea for me to come in to the Emergency Room so I did and now am admitted to the hospital again.  We are talking in the morning about the surgery and what we are going to do.  The scary things for me is I am afraid to be discharged again because I don't know how long I am going to make it through.  I just don't know but hopefully we can come up with a plan because I cannot live like this.  Thank you for your thoughts and prayers!  I will keep everyone updated!

Waiting Sucks!

I Hate Waiting!

 

As I am writing this I am sitting here in my hospital bed waiting to be taken down for a Wonderful event.  They are doing another colonoscopy this morning.  This will make number 11 for me in three years.  They say that you do not have to do these until your 50 but I guess I should just consider myself lucky that I get to so many.

 

I am hoping that after doing this colonoscopy we will have some answers.  They are hoping to get in and see if my Ulcerative Colitis has become severely inflamed again.  If you have never had the pleasure of doing a Colonoscopy let me break it down for you! 

 

 

IT SUCKS!!!!!

 

Starting at 4pm yesterday I had to take two laxative pills, now this normally would be difficult for anyone but prior coming to the hospital I was in the bathroom 18 times a day so this just escalates everything so it is a joyous time.  Then you get to drink this wonderful  GoLYTELY and it is a salty solution that you have to drink 8 ounces every ten minutes.  I like to describe it as drinking the stomach flu because once it hits you are in trouble.  It is funny talking to people who have never had one done before and explaining it to them and then hearing their reactions afterwards.  I know that this is a necessary evil when dealing with IBD but I never imagined that at 31 this is where I would be.

Censie and I are going to have some serious decisions to make after this colonoscopy on if we should proceed with me having surgery or try a new medication that sounds pretty scary to me.  I was really hoping to get in and get this done with today early but I still have another two hours till I go down.  I have only had broth, lemon ice, and jello since yesterday at 10:30. So in about three hours if you are out there and want to sneak me in some good food I will be waiting! :)

I Have a "Boo Boo" in my Tummy

I have a "Boo Boo" in My Tummy!

Today is one of the days that it is so fun living with Ulcerative Colitis.  I had been having issues with my gut, it could be a little bit of stress, who would have thought that but I had to call my GI doctor.  I am trying to make sure that my body doesn't go into a full flair, that is not something that I need to put on my family right now or my own mental health.  This morning Jude kept asking me to eat breakfast with him but I had to tell him that I couldn't, something that is impossible to explain fully to a two year old.  The best way to explain it was that I had a "boo boo" in my tummy and that I had to go see a doctor.  He continues to lift up my shirt and check my "boo boo."

Three months after Jude was born I ended up spending seven days in the hospital due to an Ulcerative Colitis flair.  Luckily my doctor knows me super well so when I call her and tell her that I am having problems she gets me in right away.  I called her yesterday and she told me to come in for a Flexible Sigmoidoscopy.  Yeah if you haven't had one or a colonoscopy they are as much fun as they sound.  

Here I am sitting in the waiting room waiting to go in.  I had not eaten anything since 9pm on Monday so I was hungry by this point, and some lady was eating in the waiting room but oh well what can you do.  So they then took me back and got my IV all hooked up.  While they were talking to me they were asking when my last procedure done was.  I couldn't remember so we pulled up the history.  I had a colonoscopy in February and one in September of 2011.  It was kind of saddening knowing that I had three procedures done within a year.  I couldn't help but think of when my father called me asking me for advice on what to do during a colonoscopy prep, something that I shouldn't have to tell me dad about.  The Dr. completed the flexible sigmoidoscopy and we did get good news.  My colon is still showing mild signs of Colitis but definitely saw signs of healing.  I did get a talking to about my enemas, I am having to get over the mental block of having to do one every night but it is the best for me and my family so I have to get through it.  

Here I am recovering after the procedure.  It is always tiring even though I don't have to do much.  I am so thankful for my doctor for always providing me with support and help when it is needed.  She is aware of my family and she always helps us get through this illness as a unit.  I am thankful that we got the good news that we did so that I do not have to consider the surgical options that there are.  I know that this is a possibility eventually but my mind and my body are not there at this point.  I am thankful for my wife for taking me and always being there by my side and supporting me.  I am also thankful for my son who is always there with a smile and a hug!  We will beat this illness together!