I Can Never Participate in the Greatest Joke Ever Again!!!

This has to be one of the worst realizations I have had since I became an Ostomate in January 2013.  Due to having a stoma that produces gas and does it whenever it wants.  You know like while you are sitting in a a group of professionals and it is dead silent and Gustav the stoma lets one rip.  I have no control over this any more which means I can never be the father or grandfather that does the "Pull My Finger" joke.  Please allow me a moment of silence while I morn over this.  Thank you!

How Am I Supposed to Go Swimming?

When I was told that I was going to be getting a permanent Ileostomy I had many questions.  One of those questions was how am I going to go swimming?

I mean really think about it I have a "Bag" attached to my stomach with just adhesive and lets not even go into what it is full of:)  I was so nervous about how am I going to go swimming again.  This was a big thing for me I love swimming and my parents live in Arizona so we go swimming every time we are down there.  Lets be honest who wants to be in Arizona in July and not be in a pool, not this guy!

When I was first told about my Ileostomy I began doing some research on different types of wraps and things that people use to have what they call a "normal" life.  I do wear a wrap every day to keep my Ileostomy closer to my stomach so it doesn't show as much and also makes it easier to wear dress pants but think of this wrap as a tube top that I wear on my stomach.  It more or less holds it there but doesn't do much else from there.  

This is when I stumbled upon an AWESOME company called Stealth Belt (www.stealthbelt.com).  This belt is amazing.  It holds my Ileostomy in a little pouch that is held very tightly against me by Velcro straps.  So it doesn't just cover my Ileostomy it actually holds it while I am doing active things.  Also it is made from the same material as swim suits so I can wear it to go swimming.  How awesome is that.  The other thing that I love about this wrap is that it is much smaller than my day in and day out wrap so when I do have my shirt off for swimming it is not as big of a deal.  

They do make the Stealth Belt in a variety of different styles and also patterns so one can wear it no matter the occasion.  The other thing that I love about my stealth belt, especially as I am now hoping to get back to working out, is that because of its design it also is a hernia support.  This is a huge deal when you have an ostomy.  The Stealth Belt can be found at www.stealthbelt.com and it is easy to measure yourself for it and get it ordered right away.

 

Here is a picture me wearing the Stealth Belt prior to going swimming with Teagan for her swim lessons.  This is an amazing belt and it has made me feel comfortable enough to go swimming again.  I cannot wait to put it to good use this summer when we go to Glenwood Springs with my family and Jude and I go down the water slide together.  

Please pass this information on to anyone you know that has an ostomy or my be facing a future with one.  The more we know the more comfortable we are.  I know this was something that scared me at first when thinking about having a permanent Ileostomy.  

Disclosure:  I was provided with a FREE Stealth Belt in exchange for a product review. However, all the opinions expressed here are my own.

Daddy why do you have a bag?

Dad you have a bag?  This is a question that I hear pretty frequently now a day from my son Jude!  He knows that I have an ileostomy and that I now wear a bag on my stomach.  He always asks why do you have a bag?  I have to explain to him that daddy was sick in his tummy but that this has made daddy feel better.  He then goes into to explain to me that I have poop in my bag.  I am glad he at least knows what is going on with itJ

 

These are the things that you have to deal with sometimes when you are an ostomate and a parent.  It has been a pretty large life change for the past 6 months.  I went in to the hospital on January 9^th for my surgery and I have been living with my "bag" ever since, and will be living with it for the rest of my life. 

 

Physically I have been feeling better up until recently.  My wound had healed to the point that I didn't have to go to the doctor daily anymore on May 16^th, but then in the first week of June I had problems with it. They just thought that it was something minor but I went in on the 12^th of July and the wound has reopened.  We are not sure why but I have to go in daily again to have a nurse pack the wound with dressing.  Let me tell you it is a BLAST!  Not only did this take a hit on my physically but I would say more so emotionally and mentally.  It is hard dealing with this wound that does not appear to be healing.  Overall though physically I am much better.  I am able to go out and do things with everyone without having to worry about being sick.  I do have to worry about bags coming off or leaking oh and the fun alien noises it makes but so far those have been far less common then when I was really sick and in a flair.  It is nice being able to plan to use the bathroom besides having to run to the bathroom while squeezing your butt cheeks together praying to all that is holy that you make it in time!

 

I am able to wrestle around with Jude but he knows that he has to be careful of my tummy because I have a bag.  It is an experience trying to potty train a little boy and living with an ostomy because things are done so much differently than how he does things.  He is just very curious about it but is not shy about telling people about my bag or wanting to see my bag in public, yeah that’s a fun one!

 

Mentally I feel that it has been harder than anything else.  If you have spent much time with me you know that I can be a little obsessive compulsive but I am constantly checking my back to make sure it is not leaking.  It can get annoying for others and for myself.  I also have not been dealing well with the self-esteem pieces. This will come and I know it and I am working with a counselor for it but it is a hard thing to deal with having a "shit bag" attached to your stomach every day.  There are days that I am angry at having to have it but I am trying to remain positive and remember that I am healthier with a bag than I was without one.  Overall the past six months have been an up and down roller coaster at times but I am glad that I can smile with Jude when he walks up and wants to see my bag or says why do you have a bag?  I want a bag too daddy! And I can smile at him and say I hope he doesn't but knowing that love makes it worth it!

A Quick Look Into My Brain! (Buckle up!)

“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.”
― Henry Wadsworth Longfellow

The definition of Depression is as follows:

1. Severe despondency and dejection, accompanied by feelings of hopelessness and inadequacy.

2. A condition of mental disturbance, typically with lack of energy and difficulty in maintaining concentration or interest in life.

I however would describe it as a nasty snake that can creep in and wrap itself around you and it will easily consume you before you even know it is there.  This snake as I like to call it has had a major impact on my life for quite some time, now whether or not I want to admit it is a whole different story.

              Growing up mental health was not something that was talked about or even I feel accepted in my family.  If you were felt different you didn’t talk about it you didn’t go see someone you just dealt with it.  Now this may have been only my perceived impression of how it was handled, but then again this is my blog and that is how I felt!

              I think that there are many people who have a negative view of depression and that they feel that all I do is sit around my house in a robe eating and crying.  I can let you know that is not the case.  I get up I go to work everyday and I come home and spend time playing with my family but mentally I do struggle with this.  It is a challenge that I fight every day that no one sees, I wish I could let people see it because then I think that it would be understood more but sadly I can’t put a projector on my brain and let you see what is going on in there.

              It's funny in many ways how many people will say things negatively about depression without knowing that they are talking to someone who is dealing with the same illness they are talking poorly about.  It took me a while and a lot of encouragement from my wonderful wife Censie but I started seeing a therapist and it has helped.  Now it's not like walking in having an epiphany and then I am all done but it is an ongoing battle of ups and downs where there are days that I feel great and then days that I feel like total shit.  I think that having my surgery has been hard for me mentally even though I feel healthy I am still adjusting to having a bag on my stomach for the rest of my life.  So this is something that I will continually look in the face and know that it is a part of me but it is not something that will consume me for the rest of my life.  I need to be present for my children and for my family!

“Man is not worried by real problems so much as by his imagined anxieties about real problems”
― Epictetus

The definition of Anxiety is as follows:

1   A feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome.

2.  Desire to do something, typically accompanied by unease.

              Now I compared depression to a snake that wraps itself around you where now I will compare Anxiety a little pesky worm inside your brain hopped up on speed making sure that you worry about everything.  In my case I worry about pretty much everything at all times.  So lets recap I have a snake holding me down and a worm making sure that I worry about every small detail about everything.

              If you have known me for any part of my life you could probably easily see me as being a pretty anxious person.  I get really bad social anxiety at this point as well.  Some of my anxiety stems from IBD.  I would always worry about what if eat something that makes me sick, where is the bathroom, are people counting how many times I go to the bathroom, and do people think I am making myself sick?  Now I worry about is my bag going to pop off, do people think that I smell, what are people thinking about me? 

              I also have a strong desire to make everyone like me and I cannot handle thinking that people are mad at me.  My coworkers know this now about me and it has become a joke that someone is just going to come up and say they are mad at me because they know I will not be able to let it go.  I worry about how people look at me and if they are judging me or if I did something to make them upset.  I worry about what people think about how me, how I look how I act.  It's like running a sprint all the time in my brain and it can be exhausting at times. 

              Luckily Censie has stood by me through all of these challenges because my Depression and my Anxiety were exasperated these last three years in dealing with my Ulcerative Colitis. 

              I am writing this post not to get people to feel sorry for me but to make mental health more normal and show an insight into my world.  I constantly hear bad things about people with mental health or that we must be weak if we go to counseling.  I would say the opposite.  I think that it takes a ton of strength to go to someone and admit that you need help and that you need support.  I want to make sure that neither of my children ever feels bad about being down on themselves or being nervous but if it becomes a huge issue in your life then you need to go and seek out support. 

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. 

 



World Meet Gustav, Gustav Meet the World!

Drum roll please..............................

 

 

Ladies and Gentleman..........................

 

 

I am pleased to introduce to you my Ileostomy and Stoma that I have named Gustav!

 

As many of you know I had to go in for a proctocolectemy in January and at this point I have a permanent Ileostomy. 

 

This is something that I am still coming to terms with but I have named it and Gustav just seemed to fit.  A long time ago I had a kid introduce me to his Gerbil who's name was Gustav Thomas.  So when I thought of a name Gustav just came to the front of my mind. 

 

I think that the hard part for me has been the healing, sad to hear huh?  I am still healing and we are almost two months past surgery, and to be honest I was not really prepared for all the healing that I am dealing with but we are almost there.

 

Since having my Ileostomy I have joined many groups on facebook and it seems as though one big step for people is to post a picture of them with their bag.  I get it, we are no longer hiding and we want people to know that this is who we are, and in my case will be for the rest of my life. 

 

My Ileostomy has saved my life and has given my life back to me as well.  I am trying to make sure that I never become ashamed of it.  I will do everything I can from here on out to wear my bag with pride and honor because the scars show the fight that I gave for so long before having this surgery.  So without further ado I present to you Gustav!

 

 



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!

Does Anyone Have a Map?

There are many times in life that I wish that it came with a Map on which to go.  This time is no different than others and I wish that I had a map more now than ever.  These last six weeks have been crazy busy and a lot has gone on, you can read about those in my other Update Post.  I am still in the hospital, this is only day three but if you have ever been in the hospital it feels like forever.  I hate when I don't look sick and start to feel better just have to stay in my room because I need to have Prednisone administered through IV so that I can feel better.

 

I have been in the hospital for a Ulcerative Colitis Flair.  I was having 18 bowel movements a day with quite a bit of bleeding.  I was trying to stay healthy so that I could take care of Censie after she had her surgery, but my body decided that it didn't want to allow that.  This has been something that has been a concern for my family the entire time that I have been dealing with this illness.  I finally got the call from my doctor that I needed to come into the hospital. 

 

After I came in they did another colonoscopy, this is number 11 in three years.  That is a lot but it could be worse but it is not something that I look forward to doing.  I had a flexible sigmoidoscopy in September, this is a colonoscopy but not as invasive, and it showed that I was healing.  During this check up it showed that I have moderate to severe Ulcerative Colitis throughout 2/3rds of my colon.  This shows that the medicine that I was on was not working and that it was not keeping my body out of a flair, which it should be.

 

So why do I want a map?  Censie, my family and I are going to be faced with a huge decision that is going to affect our family for the rest of our lives.  We have the possibility of trying one more medication.  This medication also comes with the possibility for a lot of negative side effects and my doctor has described it as a "Hail Mary" attempt at stopping my Ulcerative Colitis.  The other option which would cure my Ulcerative Colitis would be surgery.

There are two different options for surgery to take care of Ulcerative Colitis.  The first one would be a total colectomy which would remove my entire Colon and then they would give me a stoma with an ileostomy bag for the rest of my life.  If we go with this option it is not reversible.  This would be difficult as I would have to get use to having a bag for the rest of my life but would also cure all and I could move forward.

The second option would be to have them construct a J-Pouch which would be an internal pouch but would require two surgeries.  They have stated that I am younger and that I don't want to have an ostomy bag for the rest of my life but it is something to consider.  If I do the J-Pouch there is the possibility of developing Pouchitis and having to have that treated. There is also the possibility that it will fail and then they would have to do the ileostomy anyways.  Also if they do the J-Pouch you still have to go to the restroom 4-8 times per day, I know that is an improvement but still it would be difficult to have to deal with. 

I was going to post images but I figured that would be going to far.  So as you can see there are a lot of things that we have to think about and then hopefully make the right choice.  Please continue to keep my family in your thoughts and prayers as we make these decisions and I hope that the Map we decide to follow leads us to a great place!

UPDATE!
So I wrote this while I was in the hospital and was waiting trying to figure out what direction I was going to go with my health.  I met with my doctor and she felt that the medicine that we had discussed was not going to be an option for me.  She has recommended the surgery  She has stated that the J-Pouch Surgery was not an option for myself.  My body is just to severely infected, especially my rectum, yes I said rectum :)  I also have had issues even when my colon is doing well so at this point I will be meeting with a surgeon to have a total colectomy and having a permanent Ileostomy with a bag for the rest of my life.  I am nervous about this and know that this is just the beginning of this journey but I will keep everyone updated and share my thoughts as we travel on this road together.  Thank