Another crazy week last week!  Sorry I am a bit late with this information, but I wanted to tell you what all happened.

10/6/2016 – Today I woke up in a lot of pain from my stomach area. It wasn’t a blockage pain, but like an all-over type of Crohn’s pain. I knew when I got up that it wasn’t going to be a good day and will become a bread and water type of day. In the morning, I didn’t eat any breakfast but I did drink some red grape juice. I sipped on a couple of glasses of the juice and by 1:30ish I decided I should try and eat a little something. I went downstairs to the pantry and as I was getting my Chicken Noodle soup, I had that I’ve got to puke feeling. I had to run all the way back upstairs and I barely made it to the bathroom before I vomited. I had been under a lot of stress this past week and Thursday was the day when it all caught up to me. I played it safe for the rest of the day and just nibbled on soft foods.

10/12/2016 – Today I had my first appointment with my new G.I. doctor.  I really enjoyed talking with her.  She actually listened to me instead of talking 20 mph over my head and telling me what I was going to do.  I told her what happened this past summer with my old doctor, the steroids and my hospital stay from my flare up.  She told me that my type of Crohn’s Disease may be the kind that responds more to steroids and not much of anything else.  She didn’t see a reason why I shouldn’t stay on the Entecort if it would keep me out of surgery for another 1 -5 years.  I think I actually told her that I loved her!  That means if everything goes okay, I will not be having the surgery my other doctor told me that I needed, at least not in the near future.  Whoo-hoo!

10/13-14/2016 – I’m not sure why, but the fatigue has really gotten to me these days.  I don’t feel bad but I absolutely have no energy.  The things that I had no problem doing a few days ago, I cannot muster the energy to do them now.  My fingernails are also very brittle and are constantly breaking off.  I have a feeling something is going to go down, I just don’t know when or what yet..

I do have a couple of questions for those of you reading this post.  How do you cope with stress?  What are some things that you do to de-stress yourself?  I am curious as to how others deal with this. Sometimes stress gets the best of me even though I try my best not to let it. I know I say just take one day at a time, but sometimes even I have to be reminded to do as I say!

Chow for now!

Hi everyone!  I just wanted to tell you about my whirlwind of a week last week…

Monday I had a day from hell, or a typical day for me.  I got up and changed my bag first thing in the morning.  Afterwards, I decided to vacuum.  During the vacuuming, I noticed that not much was actually being sucked up in the vacuum.  I decided that a good cleaning of the underneath rollers would be a good thing so I sit down Indian style on the floor and still had to bend over to clean the rollers out.  Just then, I felt a warmth on my stomach that could only lead up to no good.  I stood up and the poop was flowing out of my bag from the side into my jeans!  I put everything down and went running into the bathroom to gather my ostomy supplies to prepare for another change.  Since the first paste hadn’t had a chance to cure yet, it was a very sticky mess to get the adhesive completely off.  It takes forever when the adhesive doesn’t have a chance to cure.  So, an hour later I had my second bag on and continued to mess with the vacuum to get it to work properly.  It seemed like it took most of my day just to vacuum!  Finally around 1:00ish I got a chance to eat me a bite for lunch.  During that time, The Talk was on and they were talking about obese people on an airplane and how they didn’t like to sit by them because they overlapped onto their seat.  It was then that I heard Sharon Osbourne say she didn’t like to sit by someone who was snoring or had a colostomy bag!  It threw me for a second before I realized what she just said.  I was angry and confused as to why she said that, she didn’t mention why earlier.  The more I thought about it, the more I felt hurt and sad that someone like her, having had cancer herself, would think something like that.  So, me being me took to the network feedback and told them just what I thought and I also took to social media, as many of you already know, and let my fb and Instagram friends know exactly what I thought, especially after the day I just had!  WHAT A DAY!

Tuesday was full of hope and excitement!  I had a couple of friends send me an article about Crohn’s Disease – experts think they found a cure for it, or at least closer to finding a cure.  That gives me so much hope for the future.  If not for me, for the people who will be diagnosed in the future.  Here is the link to the article Click here.  It makes sense.

My home health nurse came Wednesday to change my dressing and draw blood.  It wasn’t until Thursday that my catheter started aching and itching.  I think it is about time to talk to my doctor and ask her when, if at all, I can get this catheter out.  It was meant to be a temporary thing and at this time, it feels more like a permanent thing.  My stitches that are keeping it in place are getting loose and therefore my catheter is moving to and fro and making it itch like crazy!  On another note, I wake up Thursday morning to my dog thrusting her paw right on top of my catheter on my chest.  Talk about jumping up out of bed!  OUCH!

This was my week in a nutshell dealing with Crohn’s Disease/ostomy issues.  I did learn how to sit and how not to sit with my colostomy.  I am constantly learning new things in that department – unfortunately, I learn by trial and error!  It could have been worse I guess – I could have been out and about or at someone’s house when it happened! Thing is, I didn’t even realize I was sitting incorrectly, I was focused on troubleshooting my vacuum!

We will get through this disease together one day at a time.  If you have friends and/or family who think they are the only ones going through something like this, please share my post with them; maybe it will brighten their day knowing there are other people going through the same thing!

Chow for now!

Good day everyone!  Well, I received some not-so-great news today…Looks as if another surgery is somewhere in my near future.  I have some scar tissue from the last surgery wrapped around my intestine that needs to be removed and 12 more centimeters of my small intestine that needs to be removed because it is thickening and closing up.

The surgeon also told me that I would be on TPN for the rest of my life after this surgery because my short bowel is going to get even shorter (SBS – short bowel syndrome).  That means I will not be able to absorb even more nutrients so I will be receiving them through a central line.

I am still getting a second, maybe third opinion before I say yes to anything.  I’ve got til the end of October to make a decision –that’s when my doctor cuts me off my Entecort!  I’m going to do my best to stay away from surgery, however, I don’t want it to turn into an emergency situation either.

I will be okay, it is just a lot to take in right now.  I have so much planned but now it looks like I may have to put my life on hold again.  I hate doing this to myself let alone my family.  They have to put their life on hold as well to arrange their schedule to fit my recovery. I am very thankful I have them, but I also feel guilty that everyone’s life has to be put on hold as well.  Please keep me in your prayers while I am trying to make the best decision for me.  It is going to be difficult, but in the meantime I am going to keep a positive attitude about this whole situation by taking one day at a time!

Chow for now!