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.

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?

Gettin' loaded....

on Humira. Not quite so fun as getting loaded on shots of Patron, sorry. Would have been much cooler pictures and funnier video than what you are about to see too.

I first started Humira way back when we lived in Hawaii so .... probably 2007 or 2008-ish. Even if I looked through my medical records I don't think I would be able to find it. I took it as prescribed and was a good little patient for quite sometime. Then we moved off the rock and did some traveling and I fell off the good patient list. And never quite got back on it.

Whenever I would start feeling good I would decide I didn't need to take it anymore and I'd stop. Then I would start feeling really bad and start up again. The cycle would go on. The key to staying in remission is to take the medicine - no matter if you start feeling better or not. Kind of like antibiotics - take the full 10 days even though you start feeling better after day 4.

Fast forward to no medicine working for me (excluding methotrexate which I haven't tried yet) and the decision to have surgery. For those who don't know, EVEN if you have surgery for Crohn's disease and have something removed you will ALWAYS have Crohn's disease. So, no matter WHAT I do - how many surgeries I have and how much of my GI tract I have removed I will still.have.Crohn's.disease. Which means, I will always have the potential for a flare or some manifestation of the disease - which is what is happening right now. I have peristomal pyoderma gangrenosum. Eww. After several failed attempts with antibiotics and topical steroid treatments my GI doc decided to start the Humira again.

Humira is approved for use in a variety of medical conditions. In Crohn's disease TNF (tumor necrosis factor) can attack the GI tract causing inflammation. Humira is a TNF blocker - so it goes out and says "HEY TNF, knock it off!" While Humira is successful in helping a good percentage of Crohn's patients - it comes with its share of risks.

Decreased effectiveness of the immune system and cancer - like basal cell and squamous cell carcinoma. Check mark that last one for me - I had squamous cell carcinoma on my nostril. It was horrible. Once it was removed I got the all clear. I just had a follow up with dermatology and no signs of anything weird going on anywhere so YAY!

Side effects include - serious infections, allergic reactions, nervous system problems, blood problems, heart failure, immune reactions, liver problems and psoriasis.

Injection reactions, headaches, upper respiratory infections, rash and nausea round out the list. Again, check mark that last one. I am the QUEEN of nausea, because jabbing myself with a needle isn't bad enough - I should puke my guts out too. I combat that one with anti-nausea meds and they work just great. Aside from making me a complete zombie the next day.

SO, I made a little "how to" video on Humira injections. It isn't sanctioned, approved, blessed or anything by the makers of Humira so don't run off yelling at them about anything because they have nothing to do with this - it's all me.

Injections can be in the thigh or the abdomen - I've done both and prefer the abdomen. Which is itself a challenge because of my recent surgery there is much less real estate to work with not to mention that you are supposed to give it in this mapped out area around you belly button and .... well .... I'm not so sure WHERE my belly button is these days. So I just wing it.

No cursing or anything this go 'round

It's my story and I'm stickin' to it

So, I said in the last blog I'd share my surgery story.....tah-dah!

Written March 11, 2012:

I have had a handful of people ask me about my most recent experience in my battle with Crohn’s disease. I have shared an “overview” of my situation with the Facebook world and friends but only the really nitty gritty stuff with family and a VERY FEW close friends who might as well be family. As I get further out from my surgery I feel like sharing the experience – the ups, downs, triumphs and failures – will help me as I continue to heal physically and mentally, but maybe it will help someone else who has experienced something similar or someone who may be considering a similar surgery. Grab a cup of tea, a beer, a snack – whatever you need because I tend to get wordy and winded and you could be here for awhile. Also, please note that some people may find the content upsetting as there are vivid descriptions of actual surgeries, parental discretion is advised.

In August of 2011 I spent my first overnights at BAMC in San Antonio and it was pretty much downhill from there. I was in and out of the hospital about every 6 weeks staying anywhere from 3 to 6 days for complications of my Crohn’s disease. At this point I had been on nearly every medication that is approved in the treatment of Crohn’s disease and a couple that weren’t – shhhh!

My stay in October brought me in contact with the surgical team and I was referred to a colorectal surgeon. I had an initial consultation with her and we decided that surgery was definitely an option for me and it was a matter of figuring out when she could fit me in her schedule. I landed back in the hospital in early December at which time my gastroenterologist scheduled me for a colonoscopy and the surgeon attended to see what she had to work with – which wasn’t much people. I entered the hospital on December 6 and I believe I was discharged on the 11th? When I was discharged I had a surgery date of December 15.

The surgery I had is called a total proctocolectomy with end ileostomy. In regular people words that means that everything from my rectum up to my small intestine was removed/sewn up and then the end of my small intestine was brought through my abdominal wall to create a stoma – affectionately named Stella.

So, I went in for surgery at O dark thirty on December 15 and when I came out I thought all was right with the world. I was hooked up to a PCA – patient controlled access? Pain pump of morphine, I push the button it gives me medicine. Additionally I had a pain ball – I had NEVER heard of or seen one. Basically these 2 teeny tiny catheters were laid just under my skin on my ribs and they released a continuous flow of some pain medication, I don’t even remember what it was. The night of my surgery I asked to get up and walk – I made it to the door of my room and turned around to head back to the bed. The nurses were amazed that I made it to standing; I was set on healing and getting back to my life!

The next day I took a shower – as much as someone who is attached to an IV, a pain pump and a pain ball can take a shower LOL! I was allowed to eat and I had coffee, we thought everything was going very well. After a couple days I became very nauseous and started having severe heartburn like symptoms. My team feared that I was having a back up in my small intestine and inserted an NG tube to drain fluid from my stomach. At this stage either my mom or Raymond was spending the night in the hospital with me – on this specific night Raymond was with me and he noticed the color of the fluid coming out of the tube was changing, and not a GOOD changing. He immediately notified my team that there seemed to be blood coming from the tube – I must have had 8 people in my tiny room fumbling tubes, canisters, medicine, etc. I was moved to a more intensive care floor where I had a dedicated nursing team just to myself.

On December 20 I had emergency surgery; the piece of the small intestine that was used to create the stoma twisted causing an obstruction. My surgeon did a small resection and created a new stoma. I came out of surgery with an NG (naso-gastro) tube – it served to release pressure of any air that was in my stomach as well as pump out any fluid that was hanging around.

On December 21 I spiked a high temperature with an elevated heart rate and bleeding and I moved to CCU (critical care unit). Additionally I had excessive swelling in my right arm and hand. I went down for an ultrasound and x-ray. There was no clot in lungs or arm. My surgeon believed my medi- port could be infected causing the high fever. They drew blood from my port and my peripheral IV to grow cultures and determine source of infection. I also had a blood transfusion.

On December 22 they removed the NG tube after much bitching and complaining from me (well, as much as you can bitch and complain with a tube up your nose and down your throat!). I had an upper gi to see if there was an ulcer and identify source of infection. While they had me all dosed up for that procedure my surgeon worked it out to have me wheeled over to the minor procedures area and she took out my port. Until that point the blood cultures hadn’t produced anything and she didn’t want to wait any longer. My heart rate stayed good as long as fever stayed down with Tylenol. The swelling was decreasing. During a CT scan (one of at least 12 I had I swear!) they found a blood clot in the portal vein of my liver. Because I love needles so much they started me on lovenox shots every 12 hours.

I was moved back to a regular room and for the next few days I slowly improved. I realized I wasn’t going to be home for Christmas. I was going to miss seeing that look in my sons’ eyes that you only see on Christmas morning. I wasn’t going to make Paula Deen’s French toast casserole, I wasn’t going to make Christmas dinner. The only thing I did do that remotely resembled what would have happened at home was to stay in my jammies all day. The family (including my mom) came up to the hospital with gifts and we all opened things and I got to see a version of that look that kids get on Christmas. Ugh that’s depressing – move on to me being discharged on December 27!

January 1 – I had enjoyed (or slept through) New Year’s Eve but woke up not feeling so hot. I was having feelings of gastric reflux which was very similar to the way I felt right before I went to the OR the second time for a twisted bowel. Decided to head to the ER just to be safe and of course, they admitted me. It was mostly just monitoring, etc. Released again on January 11. Are you feeling like I should have a dedicated room at this point – because I was!

On January 18 I went in for my weekly Wednesday follow up. I hadn’t been feeling well the day before and contemplated going to the ER, but I figured I had an appointment the next day – why clog up the ER? They took my vital signs when I arrived for my appointment and my heart rate was 163 beats per minute. Normal is 60-100 but the average is 76-80; so I was double the “average” beats per minute. To say my doctor was alarmed would be an understatement. I was severely dehydrated and she admitted me directly to the hospital from the clinic. My blood counts got all wonky because of the dehydration and I started having some pain in my lower abdomen so they sent me for (another) CT scan. The CT showed a small abscess and a small bowel obstruction. They took me to the OR and removed mesh that was supporting my ostomy (it is common to have the mesh as support to prevent hernias in the future) and some scar tissue that had formed. After the surgery, whole pills that had been ingested for at least one week started popping out of my stoma. The intestine was not absorbing the pills and the blockage was not allowing them to pass through. I was set up with intravenous nutrition to make sure I was taking in enough calories and had to keep track of everything I ate/drank so that the calories and protein could be counted.

A couple days later the stitches that were holding my insides together came loose and I basically “fell open”. I’ll spare the details but when I say “fell open” I mean it. I went back to the OR so the surgeon could place new stitches made of a different material (and so far so good, they are still there!). I was put on a 14day course of IV antibiotics, and in true Melissa fashion it was an ultra exclusive antibiotic that required special permission from some important person in the hospital before they could give it to me. Once I was all finished with those antibiotics and the doc was confident that I would continue eating/drinking and we got home health care all set up they let me go on February 7.

I eased back in to life at home – the first week I was here Raymond and the boys basically acted like I wasn’t here. I don’t mean they ignored me, not at all. But they weren’t expecting me to jump right back into mom mode and make dinner, help with homework or go to basketball practice. I did drive myself to my follow up appointment that Wednesday and boy was I exhausted when I got home!

The second week home things began to pick up; I started getting up to put the boys on the bus, cooking dinner and again driving myself to my doctor’s appointment. I even went by my work to check in. But, all good things must come to an end and at my appointment it was discovered that the abscess they had found on that CT scan during my last stay had decided to drain after all. Sooo, the doc had to lance it again b/c it had begun to close up and she packed it. NOT FUN. I had to go back that Friday to have her remove the packing, clean the wound and re-pack it. We’ll be playing that game for awhile and I am ready for it to be over – it hurts! Good thing they sent me home with all that Lortab.

Every day is a little better and every week I am able to do more and more. I get around fine at the house, the stairs continue to be a challenge but they are much more manageable. It is still difficult to bend over b/c of the wound and now the abscess so the boys have been keeping up with the dishes and helping get things out of the dryer.

I have been cleared to return to work with restrictions on March 19 and I feel like a little kid waiting for Santa to come. I am ready to get back to “normal” or what my new normal will be.

I want to be an advocate for people with IBD and other ostomates. I want to try to re-shape the way our population views those of us who will live our lives wearing a pouch. I can do (or will be able to when I am all healed) everything I used to do. It’s not recommended to play contact sports, but I didn’t do that anyway so no love lost there. I can swim, drive, go to the movies – all that stuff. If you didn’t know my story you would NEVER know I have an ostomy – the products available are state of the art and meant to help those affected by these diseases to continue to live their lives with as little interruption as possible. So please – PLEASE if you have any questions or you have “heard” something about ostomies or people with ostomies and you don’t know if it is true or you are just plain curious – PLEASE ask me!!! If I don’t know the answer I will find out. Or if it is more of a personal question about my feelings now that I have “changed” or whatever, I’m happy to answer that too. In order to free people from the misconceptions they may have I have to be open and willing to share my feelings and thoughts about what I went through and I am ready to do that.

Thanks for reading and I hope everyone comes away from this little blip learning something new.

It came and went

without a post. World IBD Day that is. It was Saturday, May 19. I was gonna post - I really was. But, I got busy with the little people and just never got around to it. I had a great day reading blogs and watching vlogs from IBD activists all over the interwebs. Sara over at A Girl With Guts had tons of videos on her tumblr page and lots of great discussion on her Facebook page.

Here is a picture from my day

My teeny tiny was mad he didn't have a shirt to wear (he took the picture) so I came home and ordered him a "someone I love has Crohn's disease" or something like that shirt. Got one for husband too - will he wear it? We shall see.

Anyway, as the day progressed I thought I'd like to blog something - so I decided to go through my medical records. At least what I have of them. Oy. It was hard. It was hard because of the sheer volume of papers, then it got REALLY hard as I started to read through things once I had them sorted out by duty station. I had documented symptoms (though slight) as far back as April 2002. Things really started to pick up in March/April 2003 until I finally got A diagnosis in August of 2003. The diagnosis originally was ulcerative colitis. Then it was UC and Crohn's. Then Crohn's. Then back to UC. Then UC and Crohn's again. Lastly, Crohn's. Who knows? Does it REALLY matter in the grand scheme of things? Either way you slice it my body hates my GI system and would like it to get out.

Some things that really stood out for me - when I was brought by ambulance to the ER "pt states if we don't keep her she will die". Let me point out I had been through labor by this point so I knew what pain was and if I was thinking I was gonna die the pain had to be unreal because, hello....contractions effing hurt.

Before I was med-evac'd to Keesler AFB it is noted "Pt notes depression as she has had to send her infant son to live with parents in Indiana as she can no longer care for him." Geebus, ya think? I was in a hospital bed a good hour from my "home", my husband was lucky enough to be able to be with me nearly around the clock - but what do we do with Deegan? He wasn't even a year old. Ugh, my heart is breaking remembering it all. But damn, are we lucky to have the support system that we have - grandparents who just jumped right in and basically started all over raising a grandson. It was a relief for me because I knew he was being taken care of and that Raymond could be with me.

Then came the lab reports - good lord the lab reports. SO.MANY.NUMBERS and letters! ***and this is where I stopped writing*** For 2 weeks I couldn't bring myself back to finish this post. It put me in a funk. Well, maybe I was already falling into a funk and this post just pushed me along quicker. Whatever it was - I couldn't come back.

And then I remembered, people may be walking around naked without me LMAO! Seriously, I didn't think that - but I felt like I needed to come back because as much as I write this for the 4 people who read it, I write it for myself. It is cathartic for me.

So, I won't bore you with all the numbers involved in my lab results - just know they were bad. Very very very bad. Like need 4 blood transfusions bad. Blah blah blah, long story short I finally got released and got to come home. I recovered for a week or so and then I flew to Indiana to get my baby back....and so begins my life with Crohn's disease.

Many hospitalizations, procedures and medicines later it became obvious that I was at the end of the line with my colon and it needed to go. So, I moved forward with making arrangements for surgery - I think my surgeon introduced herself at my first appointment and I said "hi, when can you take it out?" I was ready. As a matter of fact, she said if she would have asked 10 surgery candidates if they would like to have surgery the week before Christmas (the next available opening) 10 of them would have said NO. Not me, let's do this thing!

So, I was scheduled and now I have no colon LOL! I wrote up a big NOTE on Facebook about my surgery and I'll repost it here in another blog so you have a somewhat complete story. It's no cakewalk and you may get grossed out. You have been warned.

I have Crohn's disease

but it doesn't have me.

In August of 2003 I was diagnosed with Crohn's disease. Crohn's disease is a form of inflammatory bowel disease (IBD) that usually affects the intestines but can occur anywhere from the mouth through the end of the rectum (anus). Sounds fantastic doesn't it? The exact cause of Crohn's disease is unknown *which is why you should support CCFA Take Steps Be Heard! but your genes, environmental factors and the body over-reacting to normal bacteria in the intestines. As an autoimmune disorder, the body's immune system mistakenly attacks and destroys healthy body tissue. It just keeps getting better huh? Crohn's can occur at any age but is most likely to rear it's head between the ages of 15 and 35. Some people are more likely to have Crohn's disease including those with a family history, the Jewish population and smokers. I'll let you guess which of those categories I fall in to.

The delightful symptoms of Crohn's disease can be all of or a combination of crampy abdominal pain, fatigue, fever, diarrhea, constipation, loss of appetite, pain with passing stool, fistulas, mouth ulcers, bloody stools, rectal bleeding and swollen gums. Some people can have very mild and infrequent symptoms while others can have them all at the same time and VERY severe. From reading the above you can imagine that you probably wouldn't recognize someone with Crohn's diasease walking down the street. Heck, you might not even know one of your friends has Crohn's disease - except for the weight loss part which a lot of Crohn's patients would pass off as "dieting" to friends instead of going into the details of their romance with the toilet. Bowel movements aren't an appropriate topic of conversation for most people - unless you are a GI doc, a colo-rectal surgeon, a new parent or an IBD patient. How many times have I heard "but you don't look sick"? More than I can count.

As an IBD patient you get to undergo all kinds of super invasive tests - as if I didn't lose enough modesty having 2 children, it is definitely gone from having Crohn's disease. Colonoscopy, endoscopy, CT with IV and oral contrast, MRI, sigmoidoscopy, upper GI series, barium enemas, etc.

I don't want to bore you with each flare-up of my disease and all my numerous hospital visits because honestly, I don't think I could remember them all without my voluminous medical record. I'll just give you my last stop. In December 2011 I had a total proctocolectomy with end ileostomy - from my colon to my rectum was removed and my hiney was sewn shut. Funny sidenote, the night before surgery I announced I was wiping my butt for the last time....only to arrive at the hospital the next morning to 2 fleet enemas before surgery. So my last butt wiping was actually at the hospital - oh well! Anywho, an ileostomy is a surgical opening constructed by bringing the end of the small intestine (ileum) through the abdominal wall and onto the skin. Intestinal waste passes through the ileostomy into a pouch that I wear on my abdomen and I empty whenever I feel the need, it starts to get full, I am leaving the house, before bed, etc. If I am home all day sometimes I will only empty it twice - depending on what I eat! Mine is located on the right side of my abdomen just to the right of my belly button (or where my belly button used to be!).

So, why did I start this blog? Well - because I want to share that you can still be fashionable with your ileostomy! For the first several weeks after surgery I lived in pajama pants, yoga pants, basically anything with a loose elastic waistband. I was still trying to figure out how this stoma (the part of the small intestine that sticks out of my skin) was going to work and fit into my life. Overtime I eventually wore my first pair of jeans! I combed the internet looking for ostomy apparel - I found LOTS of websites Ostomy Secrets, Vanilla Blush, White Rose Collection Fun Ostomy Belts to name a few, but I was hesitant to spend big bucks on something I wasn't sure was going to work for me. Plus, most of what is out there is focused on undergarments, lingerie and similar things. I wanted to wear what I already had in my closet but I knew I was probably going to have to wear it in a different way - and so Detoured Fashion was born.

So, I look forward to sharing what I find with you! The fashion I share will work for ostomates and non-ostomates alike so be sure to check in and see what I have found and PLEASE PLEASE PLEASE, leave ideas, suggestions and/or questions in the comments!!! In addition to helping my fellow "osto-mates" (a tip of the hat to my new Aussie friend) I want to help erase the stigma or taboo of the ostomy. I want to make sure the right information is out there for people - no question is too personal and if it is I will let you know!

Under construction

I am so excited to start this new blog adventure! Please stay tuned and bear with me as I tweak and fine tune things just the way I like them. Next up - an intro for those who don't know me or my journey with Crohn's disease. Please share this link with friends and family!!