Tuesday, October 30, 2012

I don't even LIKE pecans!

But I would have scratched someone's eyes out for the chocolate covered pecans at the check out of Walgreen's tonight. Damn clear liquid diet.

My ridiculous Gatorade jug is mixed with the Miralax and I am drinking. Oh, I'm drinking. I also decided it might be in my best interest to go ahead and change into a 2 piece ostomy pouching system. Reasoning is that I have the larger pouch on NOW since God only knows how this is going to turn out and I'm not interested in setting an alarm clock for every hour overnight to go to the bathroom. Then, when it is all over tomorrow I can switch to the smaller one while I am awake and coherent. Yay for options!

It's just edge of your seat kinda stuff over here tonight.

Mid-day update

Chicken broth hates me. Maybe PTSD from so much of it in the hospital? My cheeks are getting hot just typing about it - can't keep it down. Just Gatorade and coffee so far today, stopping off for Pedialyte on the way home.

See, isn't this fun!?!?

Let the fun begin!

It is -oscopy prep day at my house/work today! I'm feeling pretty lucky that I don't have to endure the whole golytely experience. The last time I had that gunk I ended up squirting it into an NG tube by myself - not how you want to spend an evening!

My totally awesome GI doc agreed to let me use Miralax instead - YAY! So, over the next 24 hours I get to eat...errr drink a clear liquid diet and then down a gawd awful big container of Miralax mixed with Gatorade.

My menu

Most people complete this ritual before a colonoscopy. I don't have a colon to -oscopy anymore so instead I am having a Capsule Endoscopy. The Mayo Clinic does a good job of explaining it so if you are wondering just click over there to check it out!

My body is currently VERY unhappy with me - I've eaten one cup of Jell-O, had 2 cups of coffe and am drinking water. Meh.

Are you a frequent flyer in the "procedure" room? What is your ritual? Any do's or don'ts? I'd love to hear 'em. Leave it in the comments!

Bottoms up LOL!

Monday, October 29, 2012

WEGO 30 in 30

Heads up people! I'm participating in WEGO Health's 30 posts in 30 days for November. You can learn more by clicking

Sunday, October 28, 2012

Life with Crohn's disease

I have been soliciting blog post ideas on Facebook for the past few weeks. Recently this question was posed "How would you briefly describe what living with Crohn's is like?" Let's start off with - I don't do anything briefly. But, I'll give it the old college try.

Crohn's disease is such a difficult disease for people to understand because it can be SO different from person to person. You may meet someone with Crohn's disease who is taking no medication, has never been hospitalized and only experiences signs/symptoms of the disease on a very infrequent basis.

The next person may be on multiple medications, have had several surgeries, spend lots of time in the hospital and/or be unable to work. Crohn's disease is SO.MUCH.MORE than what you do in the bathroom. It is NOT just a "pooping" disease.

I can only share the experience that I have had with Crohn's disease - I hope to have a guest blogger share her experience in the coming days so stay tuned for that.

Living with Crohn's disease is difficult because no one wants to hear about your bowel movements. And let's face it, most people aren't all to anxious to SHARE their bowel movements either. It is difficult because you can go to bed at night and wake up the next morning in debilitating pain....guess what that leads to? People saying "I just saw her last night and she was fine! She's not sick".

I hate the "vicious cycle". For me the vicious cycle is this - I begin not feeling well, start showing signs/symptoms of a "flare up" which usually involves cramping, pain, multiple trips to the bathroom. My mind says, cut back on the eating - the less eating the less pain, etc. there will be to deal with. If there is nothing in the GI system then the bad stuff will stop, right? So, I cut back on the eating. If you don't feed your body it starts to revolt and sustain itself on the stores of energy you have stocked up. This leads to weight loss. It also throws all the systems in your body totally out of whack. Dehydration can be a problem as well as absorption of vitamins and minerals. That can lead to dental, skin and hair issues. In extreme circumstances it can affect organ function as well; kidney failure, liver function problems, heart conditions can develop....you get where I'm going I think?

Those battles are just with the disease. There is a whole other set of potential problems when you introduce medications - they all come with their own set of side effects ranging from weight gain, hair loss, irritability, light sensitivity, increased risk of cancers, insomnia, fatigue, joint pain....again, I think you see where I am going.

Crohn's gets into your professional life - missing days of work because of doctor appointments, hospital stays or just plain NOT feeling well. It can affect your personal life - canceling plans frequently with friends, being confined to the house to be near the bathroom.

How would I briefly describe living with Crohn's disease? It's a roller coaster ride for sure. There are ups and downs - at times things seem like they are speeding along at other times it's like time is standing still. It's not glamorous but my goal is that the more WE talk about it, the more people will understand it.

Do you want a shirt with that logo? Do you have someone in your life battling Crohn's or Colitis? Check out all the awesome awareness apparel at The Great Bowel Movement!

Monday, October 22, 2012

What's that you say?

So, I have been opening up my personal Facebook page to questions from my friends about Crohn's, IBD, living with an ostomy and any other related questions. I'm working on what has turned into a VERY lengthy blog post - ugh - but in the meantime I had a question that can be ansswered short and sweet.

"What restrictions do you have now (since surgery) that you didn't have before? Is there anything you can't do?"

Yes, there is something I can't do. I can't poop from my hiney. It is also a good idea to not drink beer/carbonated beverages close to bed time or else you wake up with an ostomy pouch that looks like a puffer fish without the pretty coloring. And spiney things sticking out. And gills. Pretty much just the puffy part.

Thank you and goodnight.

Thursday, October 18, 2012

I've come a long way baby

Today I had an encounter with an ignorant person. Or maybe she was just mean. I'm giving her the benefit of the doubt by going with ignorant. At least you can change ignorant - you can't really change mean. That is part of your inner being.

I had to make a run to the hospital for a few different things, one of which was to pick up new prescriptions from my doctors as a result of Tuesday and all its appointments. There was no line to check-in which is usually a good sign. I waited my turn behind the red line to "protect patient privacy" (you'll see the irony in that statement in a minute!) and walked up to the counter when I was called/motioned over - whatever.

Note - I go to a military treatment facility. I pick up my medication at the pharmacy in said military treatment facility. This facility services active duty and retired military personnel and is one of the largest medical centers caring for our Wounded Warriors. Wounded Warriors have their own special pharmacy window in another part of the facility.

The normal procedure would be to hand your ID card to the person working the desk, they scan it, some information pops up on their computer screen (I have no idea what because you can't see it but I assume it tells them whether you are picking up a NEW prescription or a refill, there are two different sets of numbers for that!), they touch a button and out spits your ticket. If you are in uniform you get an "A" ticket, if you have a memo from your physician requesting expedited service you get a "B" ticket, I believe "C" tickets are new prescriptions and "D" tickets are refills. I could have those last two turned around - my bad.

So, I handed over my ID card AND my doctor's memo. She scanned my card, looked at my memo, looked at the screen and then looked at me. Our visit did not go well from that point on. Apparently I did not look sick "enough" to her. Below is a customer service comment I left in regards to my encounter today:

On 18 October I went to the main pharmacy to pick up new prescriptions from several physicians. I arrived to the check-in counter to receive my number and handed the woman (by the name of *****) behind the desk my dependent ID card and the note from my doctor requesting expedited service due to an open wound(s). When the woman scanned my ID card she announced/exclaimed "you aren't picking up any pain medication?!" I responded with "no, I have that medication at home". She then proceeded to tell me (and I paraphrase) that "there are disabled and sick people waiting for medications, why can't you wait 30-45minutes to get yours?" My response to her was "because I have this letter from my doctor". Before leaving the counter I stated "I wasn't aware the information desk at the pharmacy was passing out medical advice".

As I waited for my number to be called I became VERY agitated with the conversation that had happened. The more I thought about it the more I felt compelled to do something. Just because one does not APPEAR sick (to whomever is qualifying "sickness") does NOT mean that a person isn't sick.

There are a myriad of invisible illnesses that may plague any number of people who visit the pharmacy. As someone who lives with an invisible illness it is VERY frustrating to have these kinds of encounters. It is instances like this that force people who are battling these illnesses to stay in the shadows. After 9 years battling my disease I FINALLY found the courage to talk openly and share my story – this woman’s ignorance frustrates me.

I have an avenue to voice my concerns through the ICE system as do all patrons of the pharmacy service. NOT all patrons will use the service; someone else in my shoes may have accepted these remarks and felt like maybe they weren’t sick “enough” and gone on about their day.

It is not the place of anyone working in the pharmacy to judge who does and who does not "deserve" to receive an expedited ticket to the counter; I believe my physicians are the only qualified people to make that decision. END COMMENT

I actually wrote quite a bit more than that but I had to go back in and edit myself. I didn't want to make this about MY disease. I wanted to keep the focus on the inappropriate comments made by this woman. I did get up on my soapbox a couple of times but I got back down quickly.

This is what I was wearing today

Some people like to be in their yoga pants and hoodies when they aren't feeling well. Others like to dress up, put on make up and do their hair to make it not seem SO bad. Then there is me - I like to do both depending on what level of shit I feel like. Today was a "I don't want anything even touching my ostomy site that may cause pressure or rub on it awkward. No zippers, no buttons and no snaps today." The only thing meetings those criteria is A DRESS. I don't know that this individual based her judgement of me from what I was wearing today. I have no idea WHAT her problem was.

WARNING - below this paragraph I'm dropping the F-bomb. WARNED. I do know that the old me would have completely lost it on her. I would have given her a "what for" like you wouldn't believe. I would have demanded a supervisor. It would have gotten ugly. I didn't do that today. I did make a snippy comment at the end and I was kicking myself later for that. What I WANTED to do was educate her. I wanted to tell her that you cannot discern a person's level of sickness based on their clothing choice, amount of make-up applied or style of hair. I wanted to tell her about Crohn's disease and other invisible illnesses. I WANTED to show her pyoderma gangrenosum. I wanted to show her that I AM sick. Not to prove anything to her for my sake, but to instill in her that you cannot judge a book by its cover. Man, how many times have you heard that one. I want her to remember that for the next person she starts to question (she better not because that is NOT her job!) because the next person may not be well enough to stand up for themselves. They may not have the confidence to speak up. They may be embarrassed about their medical condition and rather than share their issues to PROVE their illness, instead they say nothing and wait in pain unnecessarily. I rambled - you get the point. Right?

that is along the lines of what I would have said this time last year.

Do me a favor - when you go to the store next time and you see someone riding on one of those scooter things and they LOOK fine, don't jump to a conclusion on your own. Why do you care first of all? Unless you need the scooter - which is perfectly fine! Only that person knows their pain, condition or battle being fought. When you see someone pull into a handicap spot and they get out and with pep in their step walk to the building - remember they may be on medications that are helping them be that way and by the end of their visit to that building they will be hobbling back to that handicap space.

*mad props to all the "pinners" out there who put all kinds of cool stuff on Pinterest. All the quotes/pictures (except for the one of me) came from there.

Monday, October 15, 2012

Things ending in -ostomy for $1,000 Alex!

I feel like I need to write a refresher post. I *hope* I have some new followers here and maybe not everyone went back and read from the beginning. Also, many people don't head over to google and spend hours upon hours researching all the lingo I use regarding ostomies, crohn's disease, IBD and ulcerative colitis. What better way to help them than to put it right here - nice, neat and hopefully concise. I'm not so good at the concise part.

There are a LOT of words ending in -ostomy. IleOSTOMY, colOSTOMY and urOSTOMY are the one's I hear about the most. There are others - but for the intent and purpose here I'm talking about ILEOSSTOMY and COLOSTOMY. If you want to learn about other -ostomies you can google "types of ostomies" and read for hours.

An ostomy is a surgically created opening in the body for the discharge of wastes. Tah-dah. It is my opinion, and I get to have one and share it because this is my blog, that the majority of people are more familiar with the term "COLOSTOMY". *raises hand* before I REALLY started researching having surgery and what it would entail, I assumed that I would have a colostomy. Wrong-o.

If you took etymology from Doc Shorter at Noblesville you should be able to identify the different -ostomies based on their root words. GO! Just kidding. That being said - a COLostomy uses the COLon. I bet you just learned something. I bet you thought that if someone had a COLostomy they didn't have a COLon at all, right? Ok, maybe you didn't think that - but that's what I thought. A COLostomy is created when a portion of the colon or rectum is removed and the remaining colon is brought through the abdominal wall to form a stoma. There can be different kinds of COLostomies depending on what part of the COLon is used and whether the -ostomy is to be permanent or temporary. YES, there are temporary -ostomies. Far more common than you probably realize.

Why would anyone have a temporary -ostomy? Lots of reasons, so many that I am not going into crazy detail for any of them but here are some general ideas : traumatic colon surgery where the doc decides your gut needs time to rest and heal. Instead of hooking everything back up, you get a temporary -ostomy. When the time has passed for healing the doc can go back in "take down" the ostomy and reconnect everything. Tah-dah! Think of our Wounded Warriors returning from the battlefield. There could also be an instance of someone having an internal pouch formed - Jpouch, Spouch, KockPouch, Wpouch...there are a LOT of internal pouches. I don't know squat about any of them except the JPouch and I don't really know THAT much about it. If you'd like more info on that you can check out Jackie's Blog, Sara's Blog or Charis' Blog. Or you could just google J-pouch.

What I have is called an ileOSTOMY. ILE coming from the portion of the small intestine that is used to form the stoma called the ILEUM. In my case my colon, rectum and anus (I said anus!) were all removed, my behind was SEWN SHUT and then the ileum was brought through my abdominal wall to create a stoma. I know you are having a mental picture of how that works when I eat. So, I eat - down the esophagus into the stomach, does whatever it does there and starts its way through my small intestine. Y'all the small intestine is not small at all. It is LOOOOOONG. I still have ALL my small intestine too so it is definitely long. The food makes its way through there and then comes out my stoma.

You can read up on all the mechanics of the difference between the COL and ILE -ostomies but I will tell you one tidbit. The COLON is where the majority of your fluids are absorbed, which would explain why a healthy poop is formed and not mushy or watery - all the water has been taken from it. I don't have a colon. Soooo, my poop tends to be more pudding/applesauce consistency depending on what I eat. If I hog down on breads, crackers, rice, etc. things get REALLY thick and can turn into a BIG problem. I have learned to eat certain things at certain times of the day through trial and error.

This is one of the best explanations I have seen/heard!

Colostomy vs. Ileostomy Video I hope that helps explain a little more for those who may have been confused or didn't know at all. If there are still questions or you have one of the "I wonder if...." questions please share it! I'm happy to answer and if it is something I don't know much about I'll find someone who can help me explain!

What do you have to look forward to? Well, tomorrow I have my second round of steroid injections into the skin directly surrounding my stoma (aka peristomal skin) and I plan to video it for a blog post. In conjunction with that I've been asked to share what my life is like living with Crohn's disease. Every person's experience is different so what I will share is in no way and comprehensive review of Crohn's disease, it is only MY experience.

Thanks y'all for all the support and questions! Keep 'em coming.

Saturday, October 13, 2012

Awestomy! product review!!

Once upon a time there was this guy and this girl. Then one day the guy had surgery and came out with an ostomy - and Awestomy! was born. Or something like that!

A few weeks ago I got a Facebook message asking if I'd like to "wear test" a product from their new line of clothing. Take a look over the items, it said, then message us what you'd like and what size. Umm, seriously? Y'all - I know my non-ostomate friends don't understand how major this is, but these products are EXPENSIVE to purchase from the "big dogs" of ostomy fashion. I was VERY excited - to say the least - to have been asked to try this new product, from a new start up and give my opinion.

Behold the boy short.

It is your "classic" boy short with an ostomate twist. The waistband comes a little higher than your traditional boy short AND it comes equipped with a pocket on BOTH sides to accommodate different ostomies.

The panty material is stretchy, soft and comfy. It is very much like swimsuit material in my opinion. It kept its shape well when I wore it, not getting stretched out anywhere. That says a lot because I have got some junk in the trunk - and it can take its toll on the seams of undies. Badonky-donk.

I REALLY like the waistband on these shorts. It is pretty and has just enough lycra for stretch AND hold to keep my pouch close to my body. It also has a neato silicone like strip around the inside of the waistband that made it "stick" for lack of a better term - no sliding around or potentially rolling over. It wasn't going anywhere.

Yes, that is a tattoo on my leg. It is the planet Saturn with my astrological symbols inside.

Because of my ample backside I often have trouble with undies covering my cheeks. Like I said the elastic in the leg holes can get stretched out and that can turn into a hot mess real quick. While these didn't stretch out I do wish they would have had the same silicone or whatever it is strip around the inside of the leg hole - at least on the backside to connect with my cheek - that way it would stay put once I have my clothes on. I found it difficult to get a smooth look in my pants because of it. Remember - I have an abnomrally big butt so you may not encounter the same problem!

That being said - there was never at any time a wedgie. Even with my gigantic butt and nothing to help the undies grip my cheeks - the fabric held fast and did not disappear into the barbie butt.

Yes, that is another tattoo coming around the side from my back. It is a cherry blossom tree with Kanji lettering representing "mother, wife, daughter, sister".

I definitely think Awestomy! should look into using the tops of these undies as a wrap!! I'll do that wear test for ya!

P.s.I got a medium which is what I normall wear in undies. I don't think I could have gone smaller and I think going bigger would have not been a good idea either. The sizing is spot on.

Yes, I like tattoos. Yes, I have more. Yes, I plan to get more once I get the all clear from a certain someone we all know as Dr. Pottymouth.

Disclaimer*I was not compensated financially for my review of this product. My review is my own and I was not asked to alter my review in exchange for receiving said product as part of the review process.*

Tuesday, October 9, 2012

Where I am coming from

I'd lik to take it back to fashion for a minute. I've been reading posts on several of the IBD/Ostomy sites that I frequent from new ostomates wondering "how to dress". Right after surgery life is overwhelming and the last battle you want to fight is with clothes. Many think that after surgery you are destined for a life of elastic waist pants, mu-mu's or tunics. Not.true!

Let me show you what I have to work with.

This is a side view of my abdomen - standing normally, not slouching, leaning or anything of the sort. This is just what it looks like for now. FOR NOW I say! From what I gather, this is NOT what the majority of ostomates look like 9 months post surgery.

And here I am holding the camera flat against my chest with the lens pointed straight down - this is what I see everytime I look down. Yes, that is a deep "divet" for lack of a better term. This is a result of multiple abdominal surgeries in a VERY short amount of time. My upper layers of skin became so traumatized that they wouldn't hold a stitch. So nifty internal stitches were placed. Those stitches "came loose" (without having to explain the whole story) and I "dehisced". Dehiscence is a surgical complication (tah-dah!) in which a wound breaks open along a surgical suture. What I'm trying to tell you is my guts spilled out. Seriously. The wound opened up and my insides were there for all to see. Welllll, that was not good. So, I had nylon stitches - I swear they were like fishing line! - placed and those suckers held tight and I guess the last of them were absorbed or fell out or something, I don't really remember anymore.

So, I was supposed to heal up and out. The dehisce was so bad that it left me divided down the middle. Dressing with an ostomy can be a challenge of its own in the days/weeks post op. THIS definitely threw a wrench in any plans I was thinking of! BUT, I wasn't going to let it get in the way of my style so I began searching for things to help push things together. The rest of my body is a 4-6 but in order to get things around my waist I have to get an 8 because there is extra "space" that shouldn't really be there.

Here is an example of how I erase that space:

Jeans with pouch tucked into my undies.

Victoria's Secret bandeau top turned upside down and worn on my hips. It has a good bit of lycra which pulls everything together and just enough to keep my pouch close to my body.

Jeans zipped up with bandeau top on the INSIDE not over the top of the waistband. These particular jeans are a bit loose in the waist so trying to get the bandeau top OVER the waistband is futile. HOWEVER, I do have some skinny jeans that are more fitted in the waist and putting the bandeau top on the inside of those is a bad idea - definitely on the outside over the waistband!

Ready to go! Other people probably don't notice at all, but I can see the very top of my pouch sticking out a little - a simple "blousing" of the tank top took care of that. Just a little adjustment.

Is this what you think a "bag lady" looks like? What ostomy pouch?