Sunday, September 23, 2012

Guest post - through a mother's eyes

My daughter, Melissa, has asked me to write something for her blog. Where do I begin? Do I put all my fears, anger and feelings of inadequacy on paper? I have decided I will, in the hope my words will allow other mothers of children with Crohn’s know they are not alone.

Unless this disease directly impacts them or someone they love, most people are truly ignorant regarding Crohn’s. In most minds it’s, “Oh, Crohn’s, yes…those people poop all the time and have trouble digesting foods. They really should watch what they eat and they wouldn’t get sick.” Anything related to poop is very personal and unless Crohn’s is a part of your life, most people are uncomfortable discussing normal or abnormal body functions. I need to educate these individuals, but how do I when they appear to be so anxious to change the topic of conversation? Frustrating!

No one, be it family or friends, knows the impact this disease has on the mother of a Crohn’s patient. Crohn’s is truly an invisible disease. Most times, outwardly, Melissa has looked as she’s always looked…petite, bubbly and beautiful. But…no one but me and her husband have seen her when Crohn’s has overtaken her body. The mental images I have of her lying helpless in hospital beds never leave me. I see them every day as I wonder how she’s feeling and pray for a good day for her.

Crohn’s has dictated and controlled Melissa’s life for the past 9 years and mine as well. I can’t go to bed at night without my laundry and ironing done and my house in order for fear I’ll get “the call”. “Mom, I’m sick…we need you.” Melissa’s husband is a Navy Chief which has taken them to numerous duty stations, mostly warm climates, Florida, Hawaii and now Texas. I live in Indiana where the seasons change. I’m never comfortable totally changing my closet for winter…I must keep warm weather clothes ready to quickly throw into a suitcase along with jackets or sweaters…hospitals are always cold. I’m hesitant to take vacations, even long week-ends away, for fear she won’t be able to contact me if she needs me.

Why Melissa?? Why can’t I fix this? I’m her mother… I’ve bandaged scrapes and cuts, held her while she cried with a broken heart and nursed her through mono, chicken pox and the common cold. What kind of mother can’t make her child better? I’ve spent many sleepless nights wondering if God is punishing me by making Melissa sick. If He wants my attention, He has it! The past nine years have brought me to my knees praying and begging for her health and life. Am I angry that she has Crohn’s? As we like to say, “Hell to the yes!” But, we believe things happen for a reason. Anyone who knows Melissa knows she is very outspoken and when she believes in something, she becomes the Champion. She is the Champion of Crohn’s awareness, education and the pursuit of a cure. She is my hero and the pride I feel cannot be expressed in words.

During the past weeks I’ve reflected on Melissa’s life, specifically her accomplishments…college graduation, being a strong military wife and giving me my two greatest treasures in life, my grandsons. Her selection as the “Honored Hero” for the San Antonio Take Steps/Be Heard Walk for Crohn’s and Colitis on October 6 will be added to this list. I’m confident this is a result of her unrelenting determination to educate and bring awareness to Crohn’s and Colitis. For everything she’s endured and survived the past 9 years I believe God is saying, “Now, do you understand?”

Monday, September 17, 2012

Dear God - thank you.

If you have known me for any length of time, you know that my motto-my mantra, what gets me through most things is the saying "everything happens for a reason". I've believed that for a long time. I've never had any horrible tragedy strike me - I haven't lost my husband to war. My children are happy and healthy. We lost our home in a hurricane, it was a horrible few days of uncertainty and living at a local elementary school that was serving as a Red Cross shelter. We ate from the fridges and freezers of the school, trying to use everything before it went bad. It was a character builder for sure - did it break me? No. Did it make me stronger? I don't know about that. It did make me appreciate the small stuff, bathing with water we had bottled up and baby wipes on the back porch - that will humble you real quick. Sleeping on the floor with your CHILD amongst throngs of other families - puts things in perspective. The "stuff" can be replaced, what is important cannot.

And that brings me to what has been weighing on me for most of last week. I think we all know that the road I have chosen with surgery hasn't been an easy one. I have been second guessing my "motto" and traded it in for something that I thought would prevent me from asking WHY. Silver lining. Always find the silver lining, even in my worst situations. And people say - "you have such a great attitude - always finding the good in the bad things." "I don't understand how you can be so positive in the middle of the shit storm life is throwing your way". I could go on, but you get the idea.

It is a natural progression of hiding my disease. I used to say "I'm fine" when really I was reeling with pain. "I'll be there!" even when I was SO exhausted from the 30 trips to the bathroom the previous day. "I can do it!" as I raised my hand to volunteer for something else, if I kept lying to everyone maybe my reality would change? No, no it didn't. And so here I am, using #silverlining as my new crutch for lack of a better metaphor. I find the silver lining in things because I don't want to be anyone's charity case. I don't want to wallow in my own pity. I don't want anyone to feel sorry for me. I find the silver lining because WHAT ELSE can I do to keep fighting? And then, it started to come to me.

The air started to clear about a week ago. The puzzle pieces started fitting together. All this STUFF was making sense to me. I have always heard that God has a plan, you may not know what it is at the time - but eventually it will show itself to you. Up until now, nothing ever shown itself to me. I never could see through the shit storm.

Last week, a friend shared with me something very personal. A battle that rages inside of her. I never knew, didn't have a clue - wasn't even on my radar. But she shared it with me, telling me it is something she doesn't talk about with anyone. But because of me - BECAUSE of what I have been doing in regards to my disease, she felt like she could finally say something. She isn't ready to shout it from the mountaintops, I don't know if it will ever be a topic of conversation for us again. I touched her. Something that I did made her feel like it was okay to share that part of her with me. Maybe someday she will be ready to share with more, and maybe someday she will even put it on a stage, or in a book or a blog to share with those who need to hear it.

These are some of the comments I have been getting from friends:

"So proud of you - you are so brave and strong, and have such an awesome outlook on life! xo"

" This is matter dear to my heart as well. You are always in our prayers. You're amazing woman!"

"I wish I would have gotten to know you better. By reading your posts on FB, I can tell you're a wonderful mother and wife, but more importantly, you're a SUPER STRONG, independent woman. Plus, you're hilarious! Your journey may not be easy, but you can overcome any obstacle girl! You will be a wonderful advocate for others walking in those same shoes!"

"Cheers to you my friend for being such a fighter and providing inspiration to so many in the way you deal with adversity. I wish you all the success and peace in your journey."

"You have certainly been through enough to last a lifetime. You are such the perfect person to represent and support. I think of you often and wonder just how you do it day after day and how you survived all that you have."

"SO PROUD OF YOU!!! xoxo"

Those people don't know that I spent the better part of a month (give or take) questioning WHY. WHY was this happening to me? WHY was this happening to my family? WHAT did I do to deserve THIS? Questioning God. Having what I can only describe as a complete and total mental breakdown, it all just became too much. I couldn't find the answer and my old "everything happens for a reason" wasn't quite cutting it. I was no fighter. I was not amazing. I wasn't inspiring anyone. I certainly was no one to be proud of. But, I scraped myself up off the bathroom floor and carried on- because what choice did I have? The REASON I had surgery was so I could be a mother and a wife - two things that Crohn's disease had robbed me of for too long. I wasn't going to let surgery pull a double whammy on me.

Wow - I've got a disjointed jumble of thoughts here. That'll happen when you just let your fingers go. What I am trying to say is - I get it. I understand the WHY. At least I think I do. I'm sure there is more that God is waiting to show me - but for now, this is what I am supposed to do. It is happening to me because I can handle it. I can take what is thrown at me and make it my own. I CAN share. I have to share. I am meant to teach, to educate those who don't know and to erase misconceptions. If I can get to just one person....anyone that is afraid to talk about something and show them it is OKAY. They are NOT alone, we are out here!! You don't have to buy a billboard and advertise. You don't even have to wear a shirt that says "ask me about my IBD"(though they are really cute). You just have to do what you can do for YOU - what makes YOU happy and feel fulfilled. For too long I was so busy doing things for others, to make others happy and make sure they were comfortable - I forgot to do that for myself.

So here I am. In your face. Telling it like it is. Letting it all hang out. Strutting with my front butt as a friend says (and put on a t-shirt!). The good, the bad, the ugly and everything in between.

Dear God - thank you. Thank you for giving me this challenge and helping me succeed. Thank you for putting amazing people in my life who help me be a better person each and every day. Thank you for believing in me when I didn't believe in myself. Thank you for not giving up on me when I doubted you. Thank you for loving me unconditionally. Thank you for showing me the plan you have for me - even if it is just a little snippet, you know what I need. Thank you for choosing me, because in choosing me you have kept those that I love safe. It's all so obvious now - I wouldn't wish this disease and what goes along with it on my worst enemy. I certainly wouldn't wish it on my best friend. But, you chose her to walk this road with me just like you chose all the other people out there who are speaking up and out. If I have to have someone on this journey with me - I'm glad it is my best friend.

Wednesday, September 12, 2012

Q&A - what is the process?

Spreading awareness about Crohn's and Ulcerative Colitis is important to me because I feel that it sets the patient free. At least that is how it makes me feel, so that is what I am going with. For me, spreading awareness about IBD now goes hand in hand with spreading awareness about ostomies - specifically ileostomies since that is what I now have.

Right now I want you to click on this link that will take you to a YouTube video explaining the difference between a COLostomy and an ILEostomy. Most people are more familiar with a COLostomy, heck even I wasn't sure what I was doing before I went into surgery! THAT is why I want to share my experiences and educate the population.

And here is a labeled visual of the "guts" in case you need it for reference.
I'll let you in on a secret. Before surgery was an option for me, like - before I started googling and doing internet research on ileostomy this is what I thought...I thought that a small circular hole was cut in the abdomen and then fitted with some sort of anti-bacterial plastic ring to which you attach/adhere/click a bag of some sort on. Clearly my knowledge of advanced medicine is NOT GOOD. Which, is kinda sad considering what my husband does. But seriously - how was I to know what this ileostomy thing was all about? All I knew was - no colon and bag. My mind is strange, what can I say.

As I continued to think about my original idea of an ileostomy - it dawned on me that friends/people who would never have a reason to think about what an ileostomy is might think the same thing I did. Okay, maybe not. But, there were/are probably lots of misconceptions about WHAT an ileostomy looks like or what a day is like with an ileostomy. So guess what? I'm here to tell you! It's probably going to be a 2 or 3 part post because there is a lot to say. Or maybe I am just wordy. Or both. Okay, I just get verbose when discussing things I am passionate about.

If you followed the rules and watched the video and then looked at the little anatomy picture you probably have a BETTER idea of what an ileostomy might look like in real life. For sure a better idea than I had before I did my research. I would love to show you a picture of my little rosebud of a stoma - HOWEVER since I am fighting pyoderma (see previous post) and a staph infection, it isn't exactly the picture of a "normal" stoma so I don't wanna go there.

I have a LOT of people ask me LOTS of different questions about my ileostomy, how it works, when do I "go to the bathroom", can I take a shower, does it get in the way, and on and on and on. I thought I would start answering these type of questions to eliminate some misconceptions people may have.

How do you get it to stay on? Answer, with products designed especially for ileostomies! Here is a picture of my "set up" on a change day. A change day is the day that I take my pouch off and put a new one on. Right now those days are more frequent because of the pyoderma and staph infection. I don't get as much "wear time" as I should from each pouch because the adhesive begins to break down due to the ointments that I have to use on my skin.

Let's take a tour. Starting in the upper right corner we have Stomahesive stoma powder - supposed to be used as a protectant for your skin. You sprikle it on and brush off the excess to create a barrier between the skin and the adhesive you are about to apply. I do NOT use it like that because I find that it actually PREVENTS the adhesive from sticking. You'll find out how I use it at the end of this tour when I describe my "process". Also please note that I am linking to the brand's that I use - there are a LOT of different manufacturer's out there to choose from.

Next up is Arglase powder. Arglaes powder is an antimicrobial that is used in wound healing, specifically ulcers and lesions. I use it for the spots of peristomal pyoderma. Again, I will explain more specifically when I get to the "process" portion of the post.

The taller cannister is skin barrier spray. This is sprayed directly on the peristomal skin (NOT the stoma itself) and is supposed to provide a protective and sticky barrier between your skin and the adhesive on the pouch.

Then there is a roll of paper tape. Pretty high tech. Sometimes I have to tape down my edges. The nature of my wound (due to 4 surgeries in the same place) creates a DEEP crevice right down the middle of my stomach. When I apply my pouch I have to "fold down" part of it into the crevice and try to get it to stick. Occasionally it will start to lift and I will tape it down to get another day or so wear out of that pouch - if it starts to lift off closer to my stoma I removed the pouch and put another one on.

The square flat package with a flap sticking up is a version of this ring just a different brand. I was trying a different brand so that is how it got in the picture. I typically use the one I linked to. This is a mouldable ring that you can manipulate much like silly putty - but it is sticky. So, if I have a little divet somewhere I can tear off a piece and shape it to fit in that divet so that when I apply my pouch the surface is all the same level. I often times will put 1/4 of a ring where my crevice starts to try and get some extra time before I have to tape stuff down. Many people put these rings right around their stomas as an added barrier to the output. Sometimes output can get underneath the adhesive wafer and creep onto your skin- with the use of this ring there is more protection against that.

Next, spray bottle of wound cleanser. It is what it is, a wound cleanser. I use this when I remove my pouch to get off any adhesive residue and give everything in the peristomal a good wipe down before I take a shower.

Then there is my pouch the Coloplast Assura 1 piece with convexity. LOVE. I went through I couldn't tell you how many different pouches by different manufacturers - and NOTHING has worked as well for me as this one. My nurse likes to joke that I have tried all 211 pouches in the supply catalog through our insurance company. Not ALL of them, but most. Recently I received a shipment of pouches from a company in Germany - I haven't tried them yet because they look like I may have a problem with the size of the adhesive barrier due to my crevice. I will hold on to them though because ya never know when you may need to change things up! Anyway, convexity means that the adhesive barrier has a convex shape. This helps my stoma to "stand up" more. She tends to be a little lazy and shy, she (Stella) likes to dip down for some reason which was enabling output to get under my adhesive wafer. With the convexity it is much more difficult for this to happen, especially in conjunction with the other things I use.

Next up is something that you probably won't find in many other ostomates "set up". It is Protopic ointment that is used to fight the pyoderma.

Then the silver tube is Stomahesive paste. I am in LOVE with this product. I have tried other brands and none of them work for me the way this one does. When I first got my ostomy my nurse swore by the paste and always used it on my in the hospital. Well, she made a believer out of me. I use it around the ring on the adhesive barrier so that when I apply my pouch the paste fills in any gaps around my stoma and actually "turtlenecks" up the sides of it almost making a little wall all the way around. This, just like the mouldable rings, helps keep output from getting under the barrier and onto your skin. I have also learned that people who are a little more fluffy in the middle use this to fill in any creases in their skin before applying their pouch - much like you can do with the mouldable wafer.

Moving on there is a stack of gauze pads. Exciting. I use them to wipe away things I don't want on my skin and I will also saturate them with the wound cleanser and wipe around the peristomal area.

The two tiny square packets (that look like towlettes for eating ribs LOL!) are an adhesive remover wipe and another skin barrier. The adhesive remover is just a rectangle of gauze that has been soaked in some solution that helps break the seal of the adhesive to my skin so that the pouch is easier to remove. The skin barrier is a little square of foam that is saturated with a solution of no sting protection for the skin - again it leaves the skin a bit sticky while protecting it from the harshness of the adhesive on the pouch.

So, there you have it! Whew - I canNOT wait until all these skin things are cleared up so all I have to get out is my pouch, adhesive remover, skin barrier and wound cleanser.

And my process - I use the adhesive remover to break the seal of the barrier to my skin. I run it just under the outside edge all the way around working my way inward towards my stoma. Once I have the pouch off I wipe around the stome with a dry gauze to get off as much excess of the remover as I can. Then I use the wound cleanser to clean the peristomal skin and the pyoderma. I shower everytime I change my pouch. Even if I took a shower in the morning before work and then come home and for some reason need to change - I take a shower again. Anytime I get a chance to shower "naked" I take it! In case you are wondering - yes, I shower on non-change days too! They are waterproof :)

So, I've showered and I'm ready to get my new pouch on. I prefer to do my changes in the morning because that is when my stoma is least active. Meaning, there isn't much output because overnight is the longest period of time I go without eating. If I haven't eaten there isnt' anything to get rid of - so perfect time to take it all off! I take a couple of the gauze squares and pat dry around the peristomal skin. I try not to wipe because it can irritate the skin even more than it is already irritated. It then put a dry gauze right on top of the pyoderma so get it as dry as possible so that when I apply the ointment it sticks instead of sliding all over the place. So, I've put my Protopic on the pyoderma and I need to seal that - adhesive isn't so good at sticking to something with a vaseline viscosity. So, I put a dusting of the Stoma powder on top of the Protopic and use my blow dryer on cool-low setting to get rid of any excess. Here comes the magic

Remember how I said the powder didn't really work for me in helping things to stick - it actually PREVENTED them from sticking? Well, my nurse taught me how to make a "crust" out of the powder using the skin barrier. I take my skin barrier and lightly dab it onto the powder area - NOT saturating it just getting it moist. Then I take the blow dryer again on cool-low and let that dry really well until it forms a crust, man made scab, whatever you want to call it LOL! I use the rest of that same skin barrier for peristomal skin. While I give that a chance to dry/get sticky I put a ring of the stomahesive paste around the opening on my pouch. While I wait for that to set (just a few seconds) I spray my skin with the skin barrier spray - you can never have too much help in the sticking department! Then I use part of that moudable ring to make a more secure seal down in my "crevice". Once all of that is on I center the opening of the pouch over my stoma and stick it on!

Once it is on I keep my hand over the whole thing for heat and pressure to make sure the paste gets spread into any nooks and crannies and to make sure the rest of the adhesive barrier comes in contact with all of my skin and creates a nice seal. I will also take my hair dryer on the warm-low setting and just move it all around the adhesive to really get it to stick!

How often do I change my pouch? As needed right now. The longest I can get anything to stay on is about 48 hours - which is NOT the norm. Most people I have encountered can get 3-5 days. Some even go 7.

How often is it cleaned? I assume this means how often is the pouch cleaned? Well, I empty my pouch whenever I have to potty pretty much. It is dependent on what I have eaten as well. I can always count on needing to hit the bathroom around 1030 because that is when my morning coffee has zipped it's way through my system. If I eat things like applesauce, bananas or rice it slows things down. For the most part it takes things about 4 hours from the time I eat them to the time I empty them.

Are the pouches re-usable, can you clean or wash them? There are some people who do "rinse" their pouches when they empty them. For a 1 piece system like I use it is difficult to re-use because once you break that adhesive seal it cannot be formed again. However, there are 2 piece systems where the adhesive barrier is applied and then you can attach a pouch to that barrier.

The small square with the hole is the "baseplate" that has an adhesive backing which you apply to the skin. Then the pouch has the opening on the back and that opening connects to the ring on the baseplate. Some 2 pieces attach with a foam adhesive, other's snap like tupperware containers and some have a click n' lock mechanism. I have heard of people re-using pouches when they use a 2 piece system. You can remove the pouch - clean it however you clean it - and then put it back on (changing or not changing the baseplate I suppose?) Typically people re-use pouches because they cannot afford their supplies or have inadequate insurance coverage. I am VERY blessed to have insurance that provides supplies for me as well as a wonderful nurse who is always willing to give me stuff off her shelf to try. I have used 2 piece systems and they are nice because you can use different sizes of pouches. For instance, I have a 2 piece system and one of the pouches is very small - called a mini - and the other is longer and has more capacity. I will wear the mini pouch during the day because it is more discreet under my clothing and then at night I will switch to the larger pouch so that I can sleep through the night without a bathroom break. Other reasons for a 2 piece might be for swimming or athletic events. My Coloplast pouch is in the "midi" category meaning it is between mini and regular. Did I mention that I love it?

So, there you have it. I answered a few questions, gave you a little insight into what it is like to be me in the morning, etc. I promise to continue the question answering in my next post so please - keep reading and keep asking questions!!

Another type of barrier ring (same purpose as the mouldable ring) though this one is supposed to provide convexity. It didn't work for me.

A different manufacturer 2 piece system.

The first pouch that I fell in love with. It doesn't have convexity though so we had to break up.

Saturday, September 8, 2012

It's getting real

It's getting real - real old, real fast. I haven't felt much of anything lately. If you have asked me "how are you feeling" in the past few months you probably got my standard "great!" response or my tried and true "I'm fine!". I lie. I lie. I lie. WHY do I do that? It isn't helpful to anyone, certainly not to me. If I tell people I am fine then a few weeks later I blog something like this and everyone is confused! Just like when I was sick (more sick?) with Crohn's symptoms - instead of telling people I was fine, going ahead with plans because I didn't want to disappoint anyone and making believe that it was all rainbows and unicorns I SHOULD HAVE just said I FEEL LIKE HELL. And if no one "got it" or understood, meh - move on.

So, here I am back in that same horrible cycle. Well, guess what readers. I am NOT fine. There, I said it. I told the truth. Do you know WHY I am not fine? Everything SHOULD be hunky dorey right? I mean, I had surgery, I don't have to run to the bathroom every 45seconds, I made cross country road trip with my kids and there were no major incidents to report. Life is fine. On the outside I suppose it is, but inside these walls it is anything but.

What Crohn's disease did to my insides, surgery has now done to my outsides. I hate my body. I'm pissed. I'm mad. I feel like having a pity party but I KNOW that my "issues" are SO the bottom of the barrel compared to other's lives. Which in turn makes me feel pathetic.

The other day I started watching YouTube videos - I have NO idea why, I guess I was bored. Oh wait, I remember. I was watching little Elijah's videoabout his new ostomy and then I just started clicking videos that popped up along the side of the screen.

And I started to get mad. Jealous. Angry. Depressed. The people I saw had little to no scar on the bellies. Perfectly intact skin around their stomas. Tiny mid-sections. You can go to YouTube and google to see the same things I saw - you know what you WON'T see? You probably won't see anyone with a horrendous malformed abdomen like mine. Yes, I said it. And now I regret it. All I have to do is close my eyes and put myself back at SAMMC that day to see that soldier with burns covering his face and his amputate limbs to realize that my issues are so miniscule. Silver lining, I'm always talking about it....I always need to find it.

I need people to KNOW that I am not "fine". I'm not "okay". Close? Yes. But yet still so far away. It's not that I necessarily care WHAT people think about me and what has been going on with my disease - I can handle the snide comments or the roll of the eyes people so often share. But somewhere out there is someone who doesn't yet have it in them to fend off that kind of ignorance, rudeness or just flat out mean people. I can help those people - if I can stand up and say HEY LOOK AT MY BODY and what Crohn's is doing to it, then maybe someone else will be able to say I HAVE CROHN'S DISEASE. It's a step. And the more steps we take, the more awareness there is. The more awareness means more attention. More attention means more research....and that my friends will hopefully someday mean a cure for this wretched disease.

So, it is a about to get real up in this piece - as my husband likes to say. You are warned. I am going to share pictures that only a handful of people have seen of my body being ravaged by extra-intestinal Crohn's disease in the form of pyoderma gangrenosum. Yeah, it even SOUNDS bad doesn't it? Ick. I'm not posting this picture to garner attention for myself or have people shower me with condolences and whatnots. I am sharing it because I want to spread awareness - Crohn's disease does NOT leave you alone! It is always with you and it WILL raise its ugly head whenever it damn well feels like it. I would take this pyoderma problem ANY DAY OF THE WEEK over the Crohn's related problems I was having just a year ago.

I repeat, you have been warned - graphic picture to follow of peristomal pyoderma.

Seriously, click away now if you are not prepared.

Last chance.

Taken June 12, 2012. In case you are slow on the math like me - that is almost 3 months ago. That wasn't the first picture of it. It started way back in April - so this photo is 2 months into it. That's 5 emm effing months I have been dealing with this BS. Can ya tell I am mad!? Those are open lesions on my skin that I have to (attempt) to apply an adhesive barrier over. Try putting the sticky part of a bandaid on your just out of the shower skin - before you dry off. Doesn't work too well does it? Same principle here. I just want to be my new normal. I want to wear my ostomy pouch like a normal ostomate. I want the process to take 5 minutes not 15 or 20 like it does now. This isn't even the end of the fun with my skin either. I'll share what has evolved in my next post.

30 things you may not know about my invisible illness

I took the idea from WEGO Health's facebook page, it is from Lisa and you can read her story here.

And here we go:

1.The illness I live with is: Crohn’s disease

2.I was diagnosed with it in the year: 2003

3.But I had symptoms since: earlier that same year that I remember, perhaps in early 2002 though.

4.The biggest adjustment I’ve had to make is: before my recent surgery, every attempt to leave the house was like a well thought out military maneuver.

5.Most people assume: if you change your diet Crohn’s disease is cured

6.The hardest part about mornings are: finding motivation. The symptoms of Crohn’s disease suck every last ounce of it out of you – there have been times I have lain on the bathroom floor unable to make it back to my bed.

7.My favorite medical TV show is: House

8.A gadget I couldn’t live without is: My Keurig, does that count as a gadget?

9.The hardest part about nights are: actually sleeping. Your guts don’t stop once you fall asleep, it is a 24/7 thing

10.Each day I take about 20ish pills at the height of my illness and during a flare – add in an infusion or injection too

11.Regarding alternative treatments : I have been battling this for 9 years, I’ve tried damn near everything to feel “better” but people forget Crohn’s doesn’t go away! I prefer to do my own research not get advice

12.If I had to choose between an invisible illness or visible I would choose: invisible, because only I know how weak I really am

13.Regarding working and career: it was very difficult to hold a job with frequent doctor’s appointments and lengthy intermittent hospital stays.

14.People would be surprised to know: I am a non-compliant patient. Meaning, when I start to feel better I stop taking my medication. I USED TO BE THAT WAY - I learned my lesson the hard way and follow doctor’s orders to a “T” now.

15.The hardest thing to accept about my new reality has been: watching every single part of my body, come down around me – colon, immune system, skin, gynecological, hair, weight

16.Something I never thought I could do with my illness that I did was travel alone with my kids. They are boys – I need to go to the bathroom A LOT, as they got older it got harder to coax them into the ladies room to wait for me!

17.The commercials about my illness: are nothing like reality. They are very deceiving about most illnesses I think.

18.Something I really miss doing since I was diagnosed is: eating whatever I want.

19.It was really hard to have to give up: food! I love to eat.

20.A new hobby I have taken up since my diagnosis is: since surgery it is blogging for sure.

21.If I could have one day of feeling normal again I would: do P90x or workout really hard. That would mean I was fully nourished and rested.

22.My illness has taught me: to always live in the moment b/c you never know when your moment will be over.

23.Want to know a secret? One thing people say that gets under my skin is: You eat all the time!! I eat throughout the day small snacks b/c I don’t have a COLON!

24.But I love it when people: research my disease on their own and send me links to different things, fashion – awareness items, etc. Or when they call and talk to me in medical words I know they care b/c they went out and sought information on their own.

25.My favorite motto, scripture, quote that gets me through tough times is Everything happens for a reason. The last 9 years have no been easy ones – but had I not been through them I wouldn’t be the advocate I am striving to be and I probably wouldn’t have my bestie.

26.When someone is diagnosed I’d like to tell them: You are NOT alone! Seek the information you desire and then soak it up. Ask questions, ask for referrals, get on the internet!

27.Something that has surprised me about living with an illness is: I’m not sure how to answer this. I wasn’t expecting to have an illness so I didn’t have any expectations of living with it.

28.The nicest thing someone did for me when I wasn’t feeling well was: There are too many to list b/c I have some of the most amazing people around me – taking my kids for an afternoon so I could sleep, sending me a “sockgram”, sending handmade cards, cooking for my family….

29.I’m involved with Invisible Illness Week because I want to raise awareness for IBD.

30.The fact that you read this list makes me feel hopeful that I have reached one more person. One more person may google IBD and have new knowledge. One person may share this post, and then that person shares, and that person shares…and it’s a big awareness bonanza!

So there you have it. I'd love to hear comments - or better yet, I'd love to hear that you googled and learned something you didn't know about IBD, whether it is Crohn's or Ulcerative Colitis. If you are so touched that you want to help find a cure for Crohn's and Colitis, you can hop on over to the Take Steps San Antonio-Colliers' Crohnies page and pledge one of our walkers on October 6. Every.single.penny.counts in finding cures and treatments as well as resources for peeople with IBD!

Thursday, September 6, 2012

Haven't felt fashionable lately

Haven't really felt good about much, to be honest. I'm still battling this stupid skin condition and I have gained back the majority of my weight - both of these things make me UNhappy!

There are however a couple things that make me very happy. I've had two more friends come to visit me, that I hadn't seen in more than 3 years. It was nice to be with them and not feel sick! Going out to eat and not worrying if I would have to immediately go home or going to new places and not freaking out about where the bathroom was or how clean it may or may not be. Refreshing. It's the weirdest stuff that gets us IBDers excited I tell ya.

While I am talking about eating - up there I did, see 'going out to eat...' - I wanted to dispel any myths my non-ostomy non-IBD friends may have about my current ability to eat certain foods. All ostomates and IBDers are different when it comes to diet. I always assumed that other IBDers had the same problems with certain food that I did, but that is not the case. And, getting used to my ostomy I learned that each person handles food differently that way too. To clear the record - and let me just point out I am not a doctor, I do however know a lot about Crohn's disease and specifically how it affects MY body - foods that used to bother me like popcorn, fresh fruits, nuts, seeds and salads DO NOT cause me problems anymore the way they did when I had a colon. The issues now are TOTALLY different - I have to be sure to chew things to death so that they can make there way through my small intestine and out the stoma. I have to make sure I drink LOTS of water to move things through. I've also developed some tricks and taken tips from others with ostomies. For instance, no rice for dinner. If I am going to have rice it has to be at lunch because I NEED the time after lunch to drink enough water to move that rice. 3 handfuls of popcorn is about all I can handle. If I don't really grind up almonds with my teeth they HURT coming out no matter how much water I have drank. Anytime I think something might not be "working out" for me - I drink hot tea, coffee or hot chocolate. Hot things "melt" for lack of a better term, what is inside and help it go through.

Another happy thing is I think we have finally found a church that feels right. The boys enjoyed VBS there a couple weeks ago and we have attended 2 Sunday services and I really feel at home. Which is huge. I'm SUPER picky - most people who know me wouldn't think I'm a traditional service kinda gal, but I am. I want the Sunday best, a hymnal and a luncheon in the afternoon. I can't get into the jeans and rock music at church. To each their own.

And I wrote this on 7/22 and am posting it just as I left it on that day.