My Goal/My Journey From 9 to Now

So, after laying here and thinking about it, I decided I should make a blog account following my journey with Crohn's Disease..
I hope a lot of good comes out of this decision..

My Goal
My goal is to help share my stories of triumph and discouragement over the years so I can look back years down the road and see all I've been through and accomplished.
I also want to encourage others with Crohn's Disease and show them that they don't fight their everyday battles alone because regardless of if you are a newly diagnosed Crohn's patient, or you've had the disease for years, we all (me included) go through days where we feel like we have no help and have to carry this load all on our own. I will be posting on here weekly (for sure), and there will be some extra posts if something totally awesome or totally ridiculous happens during the week, or I am just in the mood to write.

About My Disease 
My name is MaKenzie Breann Craft, I was diagnosed with Crohn's Disease when I was 9 years old.
From age 9 to 17 I have had about 10 surgeries, 3 PICC lines, 4 central lines, 2 NG tubes, 1 GTube, 4+ blood transfusions, and 2 Ostomies due to Crohn's. I have tried EVERY (yes, I do mean EVERY, no exaggeration) drug available as an attempt to put my Crohn's in remission.. None of these have been successful... yet (trying to sound hopeful..). I am allergic to countless medicines that most people use to put their Crohn's in remission.

Age 9
I started losing a lot of weight and I was super tired all the time and didn't have much of an appetite.. My local pediatrician was doing weekly labs, and begun testing me for Leukemia.. After months with no answers, we loaded up and traveled to a bigger hospital that was 1 hour and 45 minutes away and after doing a colonoscopy and an endoscopy that night, we found out I had Crohn's Disease. When I was first diagnosed, I was on Cipro, Flagyl and many others of that sort, which all ended in a horrible rash due to allergic reaction.

Age 10
The closest I had ever been to remission was when I was 10.. I started Remicaide, which is a monthly IV infusion.. The drug worked wonders for me..

Age 11
Then at age 11 I had an allergic reaction which resulted in anaflaxis. After the Remicaide "fail" I was then put on Humira which is an injection you take at home weekly, or every other week (varying on the extremity of your disease). I took Humira (every other week) until I was 12.

Age 12
Then I decided I couldn't handle the pain anymore (the shots burned so bad, I would be in tears) and I was also developing a stricture. Also, during all of this I have been on a very high dose of Predizone which only succeeds in ruining my veins and making them what IV teams refer to as "spider veins." So, at age 12, I stopped the Humira and went on a 14 week all liquid diet (just boost, and poweraid) as an attempt to give my gut a rest and prevent myself from having my first surgery.

Age 13
I am now 13 and I am going back for a CT scan to look at the stricture to see if it has gotten better or worse. Over the course of my 14 week all liquid diet, the part of my intestine where the stricture was had completely closed off to the point that no food could get through. So at age 13, I had my first bowel resection with successful re-hook. I went back on Humira (every other week) temporarily until we could work something else out.

Age 14
Age 14 (almost 15), I am back in the surgeons office with ANOTHER stricture (he said I shouldn't be back before 20 years...).. So, I went back to the operating room and had another stricture removed with a successful re-hook. Also not too long after the surgery, I catch Parvo (yes, "the dog virus") I am in the hospital for about 2 months.. I was given a very high dose of Toridal and Vancamicen which ended in acute kidney failure. Thankfully, I was able to avoid dialysis by going on antibiotics (this is where PICC number 1 comes into play) and managing my diet. I was sent home on antibiotics that ran over night and in about three months I was back to "normal."

Age 15
By age 15, I am back on Humira (every other week) and drinking can after can of Vital.. It is miserable, but I'm just trying to make it at this point.

Age 16
At age 16, I get blood work done to see if my body has developed anti-bodies to my Humira injection (I am taking Humira weekly at this point), and it has (of course). So, we have officially ran out of treatment options.. A medicine called Entivyo (an IV infusion similar to Remicaide that is given every eight weeks) is in the works, but isn't approved yet. My GI Specialist then sends me to a different children's hospital for a second opinion. While I was there visiting this hospital, I decided I would get an ostomy in order to give my gut a rest and start Entivyo as soon as it was approved. So, in August, I had my very first ostomy placed.. During this surgery I had a central line placed so I could get TPN and lipids through it.. After 3 weeks, the central line was pulled and I was sent home. A month later (September) I started passing out due to dehydration and malnutrition, so I was hospitalized.. I was dumping out over a liter a day from my ostomy (very bad) and I could keep my ins equal to my outs (REALLY bad). So I got my second PICC line placed and started fluids and TPN and Lipids also while I was on lots of medicine as an attempt to slow my ostomy output. During this stay I had 2 bags of blood too. I also have a blood clot in my groin, so I am doing two Lovanox shots a day at 8AM and 8PM. After 5 weeks, I get my first dose of Entivyo and go home.

Age 17
In October (I am now 17) I have a PE, so my blood clot went to my lungs. Thank God I have the "lungs of a bull," as the doctor said (don't smoke, kids!) and my lungs filtered the clot with minimal problems. At the end of October, I have to have my PICC pulled due to a possible line infection, which turned out to not be anything at all (better safe than sorry). In November, I am back in the hospital due to dehydration (here we go again). We have all decided that we tried this whole "ostomy thing" and it isn't working, so we take it down! I am now recovering from surgery.. I have a NG tube placed into my nose and down to my stomach so I can start getting Peptamin through it as an attempt to keep my nutrition up. I am also getting TPN and Lipids through my 2nd central line. After two weeks I started spiking REALLY high fevers, they pulled the central line and but me on antibiotics, and the fever went away. After being in the hospital for 3 weeks, I start having a bit of pain in my left side, I figured it was just muscle pain since I haven't really been "going to the bathroom" in awhile, so I shake it off and after a four week stay, I go home with just the NG.. After 8 days at home, I have no appetite what so ever, and the pain in my left side has gotten MUCH worse. On the morning of my 9th day at home, I decided I would try to eat a chocolate chip muffin, so my mom makes them for me and after I swallowed my first bite, I threw it right back up. That night I started spiking fevers again, so my mom called my GI to let her know what was going on and to tell her I was going to see my local pediatrician in the morning. My GI told her to bring me straight to the hospital there because she believed that I may have a leak.. So that night at 9PM a CT Scan confirmed that I had a HUGE leak in my intestine. By 10PM I was having emergency surgery. After 4 hours of nothing but wash outs I went to ICU on a vent and central line number 3. Over the course of two weeks I was on the vent, had 6 surgeries in 10 days (nothing but wash outs) and I had my GTube placed. During this time I have had 2 or more bags of blood (4+ bags of blood in total) My stomach was cut open from my left side all the way to my right side (right where my first ostomy was). On Christmas Eve I had my second ostomy placed (this ostomy is literally flat to my skin, so it leaks... A LOT). On Christmas Day, I was taken off the vent and didn't have to go back on. A week from Christmas (January) I am celebrating New Years in PICU with my 2nd ostomy, my 1st GTube, my 4th central line (in my neck), and a massive hole in my stomach that had a wound vac in it. Twice a week I was (Monday and Wednesday) put to sleep for them to change my wound vac and my dressing. During one of my wound vac changes, they pulled my 4th central line and placed my 3rd PICC line. After 2 weeks I was moved to the floor (GTube, 3rd PICC line, 2nd ostomy, and wound vac), where I was next door to one of my "heroes," who I may write about in another blog soon. Things were going okay, considering all I had been through, I was still having my wound vac changed (now on Tuesdays and Thursdays) and averaging on about 4 to 6 leaks a day (awesome). After 71 days in the hospital I had my very last wound vac change (my wound had gotten so small that at that point, I didn't need it anymore). I had another infusion of Entivyo and on Friday, February the 13th (after 72 days) I WENT HOME. I was at home with my 2nd ostomy, my 3rd PICC line, my 1st GTube, and a very small wound in the middle of my stomach that was being packed with Aquaseal. I was doing TPN and Lipids for 16 hours a day (through my PICC), getting medicine to help slow down ostomy output every 4 hours (through my GTube) and I has hooked up to tube feeds running Peptamin Jr. for 8 hours a day (through my GTube). In March, my PICC became infected (for real this time) and I had it pulled.

Now
Now, I am doing oral re-hydration through my gtube every four hours, I still have my flat ostomy, which is averaging at about 4 leaks on a good day, I am doing Peptamin Jr. through my GTube for 8 hours, and I am packing a very small area (where my belly button should be) with Aquaseal. I had a follow up appointment last week and things went well. I go for an infusion for Entivyo tomorrow. I continue to pray this drug works for me because if it fails, we will have to travel to another state for me to begin a stem cell transplant.

I know this post wasn't all "sunshine and rainbows" but I can assure you, that along with the really sad blogs, amazing blogs will follow..

"Just another day in the life."