Thursday, June 21, 2012

Too much

It's been two weeks. I haven't been in a good place. There have been a LOT of things going on - not just with my health, but in other parts of my life. I'm trying to get back to a good place, it is a slow process and a learning curve - but I will get there. Just give me time okay?

I am still battling the pyoderma around my stoma and we have moved on to Tacrolimus ointment (Protopic), after one day I already see improvement so cross your fingers that the progress continues.

With pyoderma comes some pretty intense pain. You may be able to imagine that applying my pouch to an area that is riddled with ulcers is painful - but them putting clothing on top of that can be even MORE painful. So, lately I have been leaning towards my knits and things that fit a bit more losely or ride lower on my hips.

My favorite pants of the moment - actually, they have been my favorite pants since I came home from the hospital. Now I have 3 pair instead of 1 :) Anyway, they are

Lands End women's fold-over waist stretch pants

Now don't freak out about the "stretch pants" part of that. They don't have stirrups and honestly, I don't think they are anything like stretch pants - whatever that even means. When I hear stretch pants I think of leggings, something that is tight fitting and "stretching" over my body.

They also have a cropped pant that is VERY similar that I plan to try out - I will let you know how they are compared to these. I totally meant to take a picture of me wearing them yesterday and got home so late I just wanted OUT of my work clothes and into sleep clothes. Next time, I promise.

Find your silver lining.

Thursday, June 7, 2012

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

Tuesday, June 5, 2012

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.

Saturday, June 2, 2012

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.