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Showing posts from 2011

getting by... life with an ileostomy

So I'm blogging for the first time in... almost a month? Goodness.

I've thought about blogging but I just can't seem to put forth the energy. I think I might be suffering a little depression since the ileostomy surgery...
Of course that's normal, at least that's what the doc and every one else tells me. It sucks though. I put on a good front but it's getting to me. It's harder and harder to hide it. I know I'll be better once my pain is gone and I'm back to a busier schedule. This sitting around recovering business is not good for my head or my soul. 
In my head, I've had several blog posts but just haven't gotten them out. This is frustrating.
Here is the latest update on my progress with the ileostomy: READ AT YOUR OWN RISK-I am very open and frank about what's going on. I had no idea how some of this would go down after surgery because no one really talks about some of  it. When I started experiencing some of these symptoms I thought …

Writer's block and Recovery

I've tried so many times to blog over the last few weeks but just couldn't seem to find the words.  I'm struggling even now. This post may be a bit choppy as I try to find my rhythm again...

It's been 5 weeks since my surgery; I've only been home for 3 of those. The first 2 were pretty rough. Hours were being watched closely until the next dose of pain meds could be taken and sleep took up most of the time. This is, by far, the hardest surgery I've ever gone through. It's taken a toll on my body reducing my strength and endurance to zero percent. I've lost 27 pounds and most of my muscle mass. I am puny. If I stand or walk too long my legs begin to shake. If I walk too far, I'm out of breath. After showering, I need to sit down to recoup for 10-20 minutes. I still can't eat very much after 13 days of not eating in the hospital. To say that I'm frustrated would be an understatement.

Mentally, I am ready to get back to life but my body is just…

FAB FANNIES!

A friend of mine is battling colon/rectal cancer right now. She is a beautiful, smart young mom with a busy family. She was diagnosed a while back and had surgery to remove the cancerous tissue from her colon only to find out later that the cancer was back and showing up in her liver. She is fighting hard to keep the cancer at bay with chemo and then another round of surgery. My heart is broken for her and the fact that she is too young to have to deal with this. I HATE CANCER. I do not know what Wendy's prognosis is but based on attitude alone, I'd say she's already won.

Just 2 weeks ago I had surgery to remove my colon and large intestine due to a disease called Ulcerative Colitis. Had I not done this my chances of colon/rectal cancer would be through the roof. So, you can say that I have a very special place in my heart for people battling this cancer. My Grandfather is also a survivor of this dreadful cancer. He had his colon removed and a very rough surgery to remove …

Honey, I'm Home!

It is so good to be back home!! There is nothing like crawling into your own bed, sitting in your own recliner, using your own toilet...
I could keep going!

For the most part, it's been a fairly smooth transition. Pain management seems to be the trickiest. I have set an alarm on my phone to remind me to take it. My bathroom trips to expel the contents of the ileostomy bag are going better than I expected too. In fact, this morning I even changed the whole contraption by myself with out incident! GLORY BE!

My tummy is still very sore from the surgery and very bruised. I look like a small ninja beat the tar out of me. My strength has a long ways to go before I am close to normal. Just walking from room to room or refilling a drink can make me very shaky.

We are so incredibly blessed by the people in our lives. For the past 2 weeks, someone has brought us dinner every other night. There have been numerous offers of help from taxing the kids to laundry service.  It is unbelievably hum…

Monnie Update from Shannon

Hey friends and family,

Monnie is home!  She has gotten much better over the last few days and has eaten food and kept it down. I think today is the third day for food.

She is a bit overwhelmed by the thought of having this bag from now on and it is a little bigger and a little more problematic than we had thought it would be.

However she is a tough girl and Since she's been home has been sleeping pretty good. I hope she can get her strength back now that she can eat and really rest.

Thank you to everyone for all of the prayers the visits and the meals.

I'm sorry if I haven't kept everyone updated quick enough .

After 13 days Living between the hospital and a few hours to sleep and take care of boys I really have no concept of time or whose done what for us

except I know we have many great friends who have all shown us incredible support and love .

So thank you so much!

i have somebodys crockpot thing here. I think it's gary wells not sure. If anyone wants to claim it …

This is the SHI... Literally.

So I would be totally lying if I said I got this.

Today I hit a wall. I cratered. I cried.

Dr. Larry, the weekend on-call doc, came to see me this morning. Nothing but good news was delivered as he poked at my belly; he felt I could go home today but thought since I was Dr. Holloway's patient, he'd let him do the honors on Monday. After all, Holloway has been with me in this from early August and had more than one look at my insides. I guess we've kinda bonded in a surgical way...

When he left my room, I was overjoyed at the prospect of going home for about 3 minutes. This was the amount of time it took to text the hubby and parents of my upcoming release. 5 minutes later I was a shaking blob of tears and fear beneath the thin hospital sheet on my mechanical bed.

I wonder if Dr. Larry saw the look of bewilderment in my eyes at the mention of going home?

I tried to slow my tears and tell myself how absurd I was being. I mean, I REALLY, REALLY want to go home! But, the thoug…

Life As I Know It

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Wow! I cannot believe my last post was September 9h. Sorry guys, it's been a bit crazy around here so I'll start at the beginning.

August 12, 2011: Dr. Lusby (my GI/cranky colon doc) treated me in his office and determined I was having a flare up of the Ulcerative Colitis. The plan of action--to admit me to the hospital in hopes of calming things down quickly. I had suffered from many symptoms of the on coming flare for several weeks prior to this Friday visit but with the onset of some blood in my stool, it was time to get serious again.

August 12-17, 2011: Days spent in the hospital on IV fluids and pain killers. Blood has disappeared but still having quite a bit of colitis pain. No solid food until evening of Aug 16th and even though it was kept down it was not pleasant by any means. Various blood tests, CT scan, colonoscopy and xrays were performed gathering data in order to meet with a surgeon if needed. Everything was lining up that would make surgery-removal of colon an…

A date has been set.

Ok Tuesday, Sept 13th is the day of surgery!

We finally have a surgery date.  I called to check because we have not heard anything and they said they were actually working on it right then.

They said first opening is 2 weeks out. I told them shes in bad pain and may need to be in the hospital because shes looking pretty bad and her pain level is starting to get like 3 weeks ago when we were last in hospital. They said they would talk to doc and try.

They just called. Said next tuesday at 11. We preadmit Monday and meet with stoma nurse to mark where she wants to wear the ileostomy bag and then surgery tuesday afternoon. probably start around 1-2 and finish around 5-6. 3-5 days in hospital and feel good in about 4-6 weeks.

So we finally know our timetable. The hardest is just not knowing and being in pain but now we just wait and get ready.

Thank you to everyone for all of the thoughts and prayers.

To all my buddies at Dove fest right now have fun and drink a beer for me. Maybe someone…

still waiting

We are still waiting to hear when surgery will be.  The last two days I have been fighting the red tape of medicine.

To make a long story short they called late yesterday and had her scheduled for a counsult with the surgeon next wed then they would set surgery .

I went to their office and pleaded with them to let me talk to the doc. They were nice but said he was gone for the day so I wrote a note and reminded him we had already consulted with him in the hospital. So please let's just get it done since shes in pain 24/7 and taking painkillers.  They called this pm and said the doctor remembered and would get us directly to surgery.

They haven't called with when yet so we r just waiting.

Monnie is a little worse today but still managing pain by pills .

 So my hope is we can stay out of hospital until surgery.


Will post more when date of surgery is scheduled.

A short lived rebound...

Monday, September 5th

It seems that my good response to the Remicade treatment after leaving the hospital was very short lived. Unfortunately, my symptoms seem to be returning. I have spent all of Labor Day weekend in bed with severe cramping and other abdominal issues.

This is very disappointing.

Shannon is searching the Internet for alternate therapies besides a colectomy. I am hiding under the covers watching netflix in complete denial.

When I first woke up this morning, I thought I was feeling pretty good--or at least better than I have over the last few days. Not so. As the day goes by I am slowly sliding back down the hill, or maybe it's a mountain?

I have a follow up appointment with my colon doc tomorrow (Tuesday). We shall see what he has to say.

I am wondering how much more of this I can take before I demand a colectomy. I am missing valuable time with my family.  I HATE being sick like this.

Shannon found a place in the UK where they use whip worms to treat UC and other…

Friends

As I've gotten older and hopefully wiser, I am recognizing the importance and value of good friends and true friendship. I am very blessed to have many friends in my life from all walks of life. You could say that my taste in friends is as eclectic as my taste in animals. Which honestly, minus some rodents, there are not many animals I am unwilling to love...

Through Facebook I've reconnected with some long lost friends dating back to elementary school days. This has been so much fun. While I was in the hospital, a sweet friend I've know since kindergarten came to see me. She is as beautiful and fun as she was back then. I really enjoyed catching up with her and appreciated the knowledge she gave me on surgeons and such. It was so great to see you Stef and you'll never know how much it meant to me that you came up. Another friend from high school contacted me via Facebook and sent me a package all the way from Washington state. I have not seen her since graduating but …

How Monnie Got Her Groove Back

I feel like a new person with some sleep finally! I ended up digging an old prescription of Ambien out of the cabinet. I hate using sleeping drugs but I was absolutely desperate!! I think I'm getting back on track now.  What's amazing, with sleep comes energy. Who knew?

Feeling like my old self now with exception of getting tired very quickly. That will change though as I continue to improve. Every day this week I've tried to complete at least one task. Monday, I started on the never ending laundry, it's still going. Tuesday, I had plans to hit the grocery store until we got a call to show the house that evening. It was a pig's sty so I spent ALL day putting crap away. We are such slobs, all 4 of us. I did luck out when my friend, who also happens to clean my house, was available to come  deep clean yesterday. I could not have made it with out you Lizard!!! Today I plan to make it to the grocery store, not my favorite thing to do, but highly important to the 2 teen…

Sleep is highly over rated...

At least, that's what I keep telling myself.

For the 2nd night in a row, I have not slept at all. I just made coffee, finally giving up and giving in to the day that is fast approaching.

This is what my stay in the hospital has done, messed up my sleep pattern. I feel like a newborn who has her days and nights mixed up.

Too bad I'm not writing a book. I could have made great headway over the last 48 hours. The author of the next Great American Novel, perhaps...

I'm slowly recovering from this bout of UC. All my strength is gone. Laying in bed for close to 2 weeks will zap you quicker than anything. It's going to take a while to bounce back to normal life. Frustration is at it's highest level.

I've been asked by several people if I was relieved to leave the hospital with my colon intact. No, I don't believe I am. I know this sounds crazy, but it's been a long 7 years with this damn disease. Removing my colon would cure me.

To be quite honest, I'm act…

Update--Monnie is home!

Dear Friends and Family,

The last two days have been a rollercoaster. As many of you know Monday after meeting with the Doctor we met with a surgeon to discuss removing Monnie's Colon. Then we met with a nice lady that would help Monnie learn how to use the colostamy bag.  The surgeon was going to try and get us in this week.

Monnie and I discussed over and over and after many stressful tearful discussions decided to go through with it.

Then yesterday morning her doc got there early before I could get there and told her that her tests were all coming back more normal than he thought they would be.
He wanted to get her an infusion of remicade and have her try to eat solid food, she had not nbeen able to eat, too much pain, since last thursday.

She was able to hold down a pb&j last night.  I got there extra early this morning as to not miss doc. if he came in early.

I had many questions, thank you Doc for your patience with a stressed out husband.

He had reviewed all the tests …

2nd update per shannon

Dear Friends and Family,

Thank you all for the thoughts and prayers.

Just wanted to update you all on Monnie's latest.

We are still in hospital and we did meet with Monnie's doc who we think a lot of yesterday. We discussed the options of removing the colon or trying to see if the medicine might work in the case that this might be a fluke deal at best case or if the medicine has lost its effectiveness. and removal of colon is necessary.

After discussing our options Monnie said she's ready to take the colon out.  We then met with the surgeon he was here within an hour of the doc calling.
He seemed like a really good guy and talked with us for a quite a while. Explained the surgery and recovery. Monnie was really kinda gung ho to get on with it.

However her doctor came early this morning and wants to give the medicine one more shot. We are waiting to get the treament. WE will just see what happens.

No idea of when or if she'll feel better and avoid surgery or not.

Thank …

Update on Monnie from Shannon

Hey Friends and family,

Monnie is in the hospital and her disease has flared up again.  She has had some rough days. She will not be  eating anything for a few more days probably. She's having a bunch of pain and is pretty nautious.  We will see our doctor tomorrow and learn much more. After meeting with him friday he put her in the hospital and he told us that we should really consider the option of surgery to remove the colon. It is the only cure and this is a horrible painful disease. Most people know very little about this disease and just how debilitating it can be because symptoms can come and go with no warning or rhyme or reason. When the disease is in remission it's almost a normal life except for side affects such as arthritis that strikes monnie every time there is a front come through especially winter time.

This article I'm including a link to below explains so much about her disease so if you like please read this article and you will have a much better idea …

Room 484

Friday afternoon Dr. Lusby pulled the trigger and told me to head over to the hospital because I am having a stinkin' UC flare. Room 484 at BSA Hospital in Amarillo is not my idea of a weekend getaway, but here I sit. Or should I say lay? I am stuck in a dang hospital bed wearing plastic labels on both wrists and hooked to an IV bag. I've been poked and prodded, squeezed by a blood pressure cuff and now I have to pee in a "hat" to measure my liquid outflow.  Oh, and a nurse comes in to take vitals every 4 hours, or at least every time I fall asleep anyway.

I wish I could say it was a shock but I kinda knew it was coming. I've been having the early signs of a flare for about a month now and this week it jumped up to full fledged flare status.

This is not good. 
Thursday I had a CAT scan to rule out any other problems which it did. This confirmed that what I am dealing with is a flare of UC. What's a flare of Ulcerative Colitis? Well, basically, the mucous lining …

Dang Colon :(

Today has been a yuck day. I'm exhausted and I've done nothing. My colon has been letting me know how unhappy it is at the moment and I can't seem to please it for anything. It's getting old.

Remicade is still a few weeks away so why all the crankiness? Weird fact, UCers have more flares in the fall. Fall is just around the corner... You cannot have my summer UC!

I'm bloated, crampy and running to the bathroom more than usual. My energy level is next to 0. Could it be something I ate? Can't think of anything that might have set me off...

Maybe tomorrow will be better.


@ home

"You feel smaller." This is what my hubby said this morning when hugging me in the kitchen. Nice. Really nice, considering he was barely awake and hadn't had his coffee yet. With out even knowing it, he made my day.

Our day started very early. Son #2 must be ready to walk out the door at 6 am for football practice which requires an adult to physically drag him from his bed. We've tried alarms, hollering at his room from downstairs and turning on his light but none of these seem effective. He must be completely uncovered and made to sit up and even then there's a 75% chance he will still be asleep. Teen boys can sleep through anything.

So back to the early morning-- the hubby is off to work at the ranch and I must get Son #1 up to mow and do other household chores. I'm not up for this battle yet; I need more coffee first. He is a grumpy bear early in the morning or late in the morning. It really doesn't matter, because he would like to sleep until 3 pm. I …

Weighing in on more than just the scales.

On Monday I went to Weight Loss Zone to weigh in. Not having real high expectations, I was shocked to see the scale drop 1.4 pounds! That means since March 18 I have lost 14 pounds total! We haven't measured since April when I lost almost 17 inches but I can tell my body is changing shape. My clothes fit different and I can even tell a difference in the mirror. Can't wait to measure again in the next couple of weeks.

I am fired up to stay on track now. I think it's what I needed too. After all the laziness of summer and food splurging on vacations, I really figured I had gained. Even though my body is showing signs of progress, my mind was not in a good place. I can now understand how people who suffer from anorexia can look in the mirror and see something totally different from reality.

The mind is a powerful weapon, it really can be a battlefield. If your not careful you can listen and believe all sorts of lies from your own head! Fear of failure often keeps me from tryi…

3:33 AM!

I cannot believe that I am up right now! I was so very tired and I just knew I would sleep well, but noooo, I wake up at 1:47 AM and now it is 3:33 AM. Really? I have to be up at 6 AM to make sure Thomas is up and ready for football. Tuesday may not be as productive as Monday...

The only nice thing about being up in the middle of the night is I've had a very nice, uninterrupted conversation with God. It always amazes me how I can find plenty of time for plenty of meaningless stuff but not enough time for Him. At 38 years of age you'd think I'd be better about this.

I love the peace that settles over me when I have this time with God. In this world, we are constantly plugged in and going 90 mph and rarely do we slow down enough to hear what God has to say to us. I am so guilty of prayers on the run, in the car, between commitments and when I'm too tired to focus. Doesn't He deserve more than that? I know He hears those chaotic shout outs too but I don't always h…

Good Gravy!

And we are up, but not happy about it! Thomas is a bit cranky for two-a-days so watch out Coach Flowers...

I'm up after a crappy night's sleep. Every joint and muscle in my body is on fire. One of the perks of not sleeping well.

I had plans to hit the gym this morning but now I'm thinking it might be this afternoon. I'll make that decision after coffee.

Yesterday, my sister had her 3rd baby! A little girl, Rachel Jane. Rachel joins big sis Kate (16 mo) and big bro Elias (3 yrs).  Can you say sleep deprived? I guess I shouldn't complain. I cannot wait to meet this little girl. It's so fun having nieces after my two stinky boys. We now have 3 nieces and 3 nephews between our two families. It makes Christmas so fun!

I'm really wanting our house to sell so we can go back to our slobby ways. This having to keep it nice and pretty all the time is killing me! I am, however, enjoying the pool with this heat. It's the only moisture around...

My 20th high school …

Snapshots

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My friend, Katy Ely (the X Factor girl & katyely.com), was needing some photos to update her website with so I volunteered to try my hand at it. I have a decent camera so, we loaded up one day last week and headed out to get a few snapshots.This was SO MUCH fun! Maybe I was a photographer in a former life? Maybe it's just the camera, but, dang if these didn't turn out spectacular!  Katy is an awesome subject to work with. She's like this natural poser so all I did was point and shoot! Talk about photogenic too, her big blue eyes and beautiful smile just pop in photos. Her inner Diva came to life and that girl worked the camera around her little finger! To prove it, I'm posting a few of my favorite shots here.



I love being creative and these really sparked that in me. I'm thinking I need to break out the camera more often. In exchange for the photos, Katy is giving me some voice lessons. I think she got the short end of the stick on this deal! I love to sing and m…

Day One

Today marks the first day of our detox from summer. Next week starts two-a-days for football and the end of our care free, schedule free, lazy days. I am not sad to see the summer coming to an end. We, as a family, function much better with the routine of school.
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Don't know what will happen to us when the boys go off to college...
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So up and exercising was our first goal. CHECK, done by 8:40. Goal 2: whip this house and the boys back in shape. This may be the hardest challenge yet so it is the only other goal for today. Oh, except for me to cook dinner...yep, it may be a hamburger helper type night.
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Depression symptoms seem to be less over the last few days. Maybe because I spent more time outside. I really need to soak up the sun. Wednesday we went to the lake with some friends, this was so wonderful! It did amazing things for me. Nothing like good friends, good sun and good fun.
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Last week I picked up Experiencing God to do as a family this fall. It's been almost 20 ye…

Dry and Dusty

I must be in a funk. I cannot, for anything, get motivated.
Part of me wonders, is it the dry and dusty landscape or am I dry and dusty inside?
It's true that we are in a terrible drought right now. No significant rainfall for months has left our big open spaces brown and tired looking. Aside from lawns that are watered there isn't any green. It's quite depressing to see. Farmers who don't irrigate can't grow, those who do have mangy looking crops. Yards that are watered still have dry and patchy spots. Where is the rain?
This is how I feel inside too, dry and patchy. Why isn't my sprinkler system working? I think I need a thunderstorm both physically and spiritually.
Spiritually speaking, I am in a self-induced drought. I haven't been dedicated to the Word. I've been lazy. No excuses, just lazy. Oh, I've read plenty of books, just nothing worth anything to my soul. Thanks to a friend of mine who texted me to see if I had read or knew of any good Bi…

Antibiotics: Friend or Foe?

Avalox. This is an antibiotic that I took a couple of weeks ago for 5 days to clear up a nasty sinus infection. It is one of the very few antibiotics that I am not allergic to. While it worked wonders on my sinuses it wreaked havoc in my gut. Every time I must take an antibiotic I also take probiotics to help keep my colon happy. When I feel myself getting sick, I try everything in my power to get over it with out the help of antibiotics, but sometimes, you just need a round to kill infection. Even though I was only on the Avalox for 5 days, it was enough to cause some serious cramping and put me in bed for several days. I won't share the gory details of all that antibiotics do to me, lets just say that I must stay close to a bathroom.

It's been 10 days since my last dose and I am still feeling the effects of the antibiotic. I have had to change my diet to include more carbs than normal because veggies don't do me any good when my system is off kilter. They actually make …