for what it's worth

 No, I'm not going to throw fowl language around although, I could probably string a line of curse words together that would make a sailor blush. This seems to be a talent I am fairly good at unfortunately. One I'm not very proud of... Moving on-- I wanna talk about poop. Yep, I said poop. Bowel movements, laying logs, crap, pooh, number 2, dump, dung, feces, toilet oysters, the dirty, stinky, and of course,  shit. (check out these: poop names ) Whatever you call it, I wanna talk about it. We all do it. Don't pretend like you don't! If you really, really don't--go see a doc, now! Everyone should be well acquainted with how their body rids it's self of waste. I am often asked how I knew I had Ulcerative Colitis. Well, this is not a simple question for me to answer. I think I had symptoms of the ugly monster long before a diagnosis was ever made. As far back as I can remember, my bowels have been a source of irritation and discomfort at various times. It w...

A few of my "personalized" ostomy bags.  Life is better when you live it out loud! Tomorrow is World Ostomy Day and in honor of that I am going to be loud and proud of my ostomy and the quality of life it has given me. So get ready-- A year ago last fall I was in the middle of a horrible flare, the one that said Remicade (my drug of choice) was no longer doing it's job. Time for the colon to leave the body forever. Now--it's fall time again and I am truckin' right along. Do you know what I did yesterday? I played tennis. Yes, I realize you may thinking "SO?" but, let me set the scene for you:          It's early morning, the wind is howling at 30 mph from the north. The sky is overcast with thick grey clouds. The temperature reads somewhere in the 50's but the actual feel is more like the 30's due to the constant wind.      After a great night's sleep, I get up, out of bed and stumble to the kitchen for coffee. Looking over m...

When I opted for my permanent ileostomy in September 2011, I really had very little knowledge about what this journey would entail. I found all sorts of clinical explanations but nothing from a personal and intimate view point. I have since come across various personal blogs and Facebook pages of other people dealing with many of the same issues I do. This has inspired me to make an ostomy support group page on Facebook because the Amarillo/Texas Panhandle area does not currently have one. West Texas Ostomy Support Group If you would take a few minutes to check out the link above and maybe "Like" and share it with a friend or two who might be interested, it would make my day! It's not strictly for people in the Texas Panhandle, I just wanted to reach out directly to those of us in this area since I don't know many ostomates in my own area. The focus of this page is to give people a place to share their stories of life with an ostomy, j-pouch, bowel disease and ...

One year ago today I began my ostomy journey. The Ulcerative Colitis reared it's ugly head in July of 2011 which signaled the Remicade therapy was no longer effective. My doc decided hospitalization was needed for strong IV steroids and pain management. Remicade was my last resort before surgery became a must, and now we had to start shopping for a surgeon. After a week in the hospital, my doc wanted to do one last round of Remicade just to see if it would be effective. I normally went 6 weeks between infusions and this would make 4 weeks between my last one. My leash was shortening slowly. I was released from the hospital and went straight to my doc's for Remicade. It only helped for about 10 days. It was defiantly time for a new plan. We opted for a permanent ileostomy. Long story short (more about it in posts starting in August 2011), I now have a little opening in my abdomen to attach a bag which collects poo. Some would see this as the end of the world as they know i...

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...

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...

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 tee...

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 reviewe...

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...

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 ...