Surgery #3 - ileostomy Reversal

TAKEDOWN SURGERY AKA RECONNECTION!

The purpose of surgery #3 was to get rid of the external ileostomy bag and get hooked up to my own plumbing! Finally they would take down the ileostomy bag! I never thought I’d be so excited to poop!

Here's me one day before surgery with a random dinosaur statue outside my hotel in Rochester, MN. I was taking full advantage of my healed up abs, because the next day, I would be back to sore abs for anther 6-8 weeks!

POUCHOSCOPY

Before they would proceed with the ileostomy reversal, I had to have something called a “pouchoscopy” done. The procedure is similar to a colonoscopy, in the fact that they shove a tube and camera up the butt and take a look around. I must say that its a good thing I have a cute butt, because I've had to show it to waaay too many people. Anywho, surgeons wanted to be sure that my J-pouch would be able to hold waste and not leak. So what did they do to check for leaks? Why, fill my J-pouch uncomfortably full with liquid of course! It was quite a nerve-wracking procedure, not only because I was conscious during it, (ow) but also because I knew that at any moment I might hear the heart-breaking news that it hadn't healed properly. Up until that moment, there was always a chance that I might end up stuck with a permanent ileostomy. All those months I had waited to be reconnected, might have gone to waste. However, the scope showed that my J-pouch had healed nicely, without any leaks and that my small bowel was in “pristine” condition! My butt was ready to be used as a poop chute once again! Hooray!

May 3, 2012

Here's me the morning of the surgery, posing for a photo op with the Mayo statue guys. (They liked the attention!)

ITS GONE??

After my Takedown surgery, I was still in the habit of checking to see how full my ileostomy bag was, which was quite humorous because every time I’d go to feel for it, it was GONE!! Gone? Yes- gone! What a glorious realization!!! My wonderful flat stomach was now free to be flat and free again! I could wear my regular clothes because I didn't have an appliance to cover up anymore. I could wear jeans again without having to worry about my bag becoming untucked in public. Truthfully, living with the ileostomy wasn't the end of the world, but I am happy to be bag free now!

EASY AS PIE?

Due to the fact that this surgery was less invasive, rumor had it that this would be the easiest of the 3. All they would need to do was sew the two split ends of my small bowel together, shove my insides back inside, and stitch the hole up! No reconstructing or stapling this time! Sounded simple enough to me! Easy as pie, right?... Aww shucks, not in my case...

THE BLOCKAGE

I ended up getting an intestinal blockage, which made me more miserable that I'd EVER been. More miserable than the time I almost died from bleeding to death, more miserable than knife butt, more miserable than sleepless weeks, more miserable than Colitis pains. The cramps of an intestinal blockage were worse than anything I'd ever imagined. I've never given birth to a child, but I feel its a safe comparison on a pain scale!! The cramps were gut-wrenching. They felt like giant air bubbles stuck inside me, that ought to make me explode! Like LAVA rolling around, totally trapped. Extreme and humbling, the cramps came and left, leaving me breathless. It took over several days to resolve AKA fart the cramps all out.

WHY IT HAPPENED

Right after surgery the doctors wanted me to start eat food right away to get my guts waking up from the anesthesia.They stressed for me to remember that using my new insides would be similar to living with the ileostomy, but to keep in mind that it would be on the inside now. My guts would function the same as before, just invisible to my eyes. So I proceeded to eat like I had when I had the ileostomy. Lots of “thickening” foods with little liquid. Somehow my food got backed up inside of me. (Probably partially because of the fact that my guts had just been sewn back together and were likely SWOLLEN in certain areas, making it hard for food to pass through.) My swollen intestines got stuffed full of food and the only way for it to come out was by puking, and I puked...for 8 hours straight!

*Ahem* To anyone looking forward to having their Takedown Surgery: Keep in mind...
When you are allowed to eat after surgery, use caution. If you are not careful to chase food with PLENTY of liquid, you'll likely get a blockage and might require the placement of an NG tube to stop your constant vomiting. Granted everyone’s experience is different, but I figure I'd throw my advice out there. My blockage took 4 miserable days to start to pass through and was an experience I cannot forget (in a really terrible sort of way)

PASSING A BLOCKAGE

How do you help a blockage pass?

1. Drink lots of liquids to help push the trapped foods through. (Hot tea especially is a friend)

2. Walk to encourage movement.
3. Wait it out.

4. If severe, NG tube goes in...
Sometimes a blockage gets really bad and even the liquids you drink get backed up. I mean, there's only so much room in a person's stomach, right? Eventually you vomit up food, along with the liquids you've been drinking to try and help it pass.... Plus stomach acid; that stomach acid is super tasty to vomit up! =P (I swore it would take weeks to brush my tongue clean!)
So anyways, the vomiting won't stop until the blockage is able to move through the other end. I kept vomiting every half hour and ended up having to get an NG (nasal-gastro) tube placed in my throat. Having a tube shoved down one's throat while awake is very traumatic, period.

NG TUBE

Here's how the experience went...They shoved a plastic tube up my nose, down my throat and into my stomach. This tube then sucked up the stomach acid up and stopped the puking (at least in theory). I gagged so bad when they put the tube in! I threw up like 5 gallons (not kidding) all over myself, my fiancee and the nurse. At least when it was over, it was in. Oh how I wish that was the worst part of it, but it quite possibly was not... I had the NG tube in for 3 days and was miserable. Every time I looked in the mirror at myself I almost puked - grossed me out! They didn't allow me to eat (obviously), so I was hungry. Only water or liquids were allowed IF I could tolerate any without puking. That stupid tube made my throat sooo sore. It was constantly rubbing on the side of my throat. When I would swallow my spit, I could feel it there. It hurt to talk, so I would either whisper what I needed or I would use hand motions. I established a pretty ridiculous, made-up sign language with Jim and my mom during this time. My ear also became sore from the tube's presence. The only thing the nurses could offer me was some numbing throat spray. It temporarily eased the ache, but I was only allowed to use it about every couple of hours. The throat spray tasted like cherry, and now I forever associate cherry flavor with having a tube in my throat. I'd never wanted anything out of my body so badly before! When they finally did take it out, it was equally traumatic as when they put it in. Apparently I've tried to block this experience out of my memory as best I could, but I oh I cried and cried during this trauma.

5-5-2012
This was my original wedding date, chosen before I got sick from UC again and before I ever decided to have surgery. How ironic that what was supposed to have been the happiest day of my life turned out to be the most miserable! Instead of wearing a white gown and carrying flowers down an aisle, I was wearing a blue gown covered in vomit and having a tube shoved down my throat in a hospital. Instead of celebrating with friends, family and my husband, I was hungry, sore, drugged and frustrated. I was feeling so low, and struggled to believe things would get better. Fact: sometimes it is hard to have faith.

MEET AVALANCHE!

(My giant penguin!) Jim had originally planned on giving Avalanche to me on May 5, so I wouldn't be so bummed that we weren't getting hitched that day. However Jim soon realized that he was way too massive to take as carry-on on an airplane! So I got to meet my penguin love ahead of time, so he could be waiting for my return home... Is he not the cutest penguin EVER???? I think so. For the record, Avalanche is even cuter in person!

POOPING! YAY!

The Mayo Clinic told me to expect to be using the toilet 10-20 times a day right after my Takedown surgery. After 4 days of blockage, my bowels finally kicked in, and stuff started moving through. Thank God that I started pooping! (well sort of...) I pooped blood, 1700 ml of it in 12 hours (that's A LOT!) It was very frightening to poop blood for an entire day. The nurses thought something might be wrong and I got RE-marked for surgery, in case they'd have to operate. I'd just gotten rid of my ileostomy bag, and now I was being marked to potentially get it back?? It was a pretty depressing night to get through. In the morning my surgeon visited me and reassued me that it was just old blood from surgery. Apparently it can be normal to pass that crazy amount of blood. Odd. 

BUTT BURN? 

Looking back at the blockage, I think I was trying to spare myself from the impending doom and gloom of something called “butt burn”. You see, when you don't have large intestines to go through, all your food is a lot more acidic and harsh. No colon + no rectum + stool = butt burn. Remember “ eroded skin” issues from the ileostomy on my tummy? Its equivalent is now a chemical burn on the anus. My butt became raw and sore from liquid stool passing through there. The itching and burning was infuriating! My 3 hour flight home after I got out of the hospital was awful. I literally cried during the entire flight. I felt sorry for the people sitting near me on the airplane. It must have looked like I was having an emotional breakdown about about flying or something. I just covered my head with my coat and wept, waited and sobbed.

I wanted to CRAWL OUT OF MY SKIN, for the next 3 months. I tried different creams, bathing techniques, etc, but nothing would soothe the burn! I couldn't sleep at night and the only sleep I did get was from all the Benadryl I was taking to knock me out. Even so, the itch would wake me up at night and drive me INSANE. Every time I would use the toilet it burned like hell. Chemical burn on anus = not fun. Showers and ointments were my new best buddies. Butt burn was and sometimes still is maddening! It sucks too because you can tell your physician all about how terrible it is, but unless your doctor has also had their rectum removed, they just can't understand the agony.

MAGIC CREAM?

For anyone else out there searching for a “magic cream” to rid yourself of butt burn- It doesn't exist. I probably wasted at least 50 bucks testing stuff out. The issue is that once there is such a bad chemical burn, no soothing creams are going to help. Be patient though; I know it seems like the torment will never end...but it DOES get better- I promise. Okay, as far as that magic cream, I sort of did find one: Cortizone 10 cooling relief gel. I found it at Target or Walmart. The directions specifically say not to use inside the anus. I disobeyed, and got some relief. I am gunna warn you though, it burns super bad for like 15 seconds, and you will be screaming... but then the cooling relief sets in and the agony takes a break. I asked my doctor about using it. She explained that the chemicals in that stuff can actually break down your skin tissue and make it super thin, so she cautioned me to only use it when necessary. I was dependent on the “burny cream” as I called it, for 3 months straight. I was then able to ween myself to using it less and less and finally, I rarely need it anymore. 

**Update** 
2 years post Takedown I have a solution! My best advice in dealing with butt burn is combination of several things...

1. VASALINE - Apply to anus skin before stooling, not afterwards. It sort of puts a protective film over the skin. Think about it...why would it do any good to apply it after the acid poo flies on by??
2. WIPES - Make sure whatever brand you buy is alcohol free. I prefer the flushable type because well duh, gross.
3. CALMOSEPTINE - This stuff can be found at local drugstores, such as Walgreens, CVS and sometimes even Walmart. Its OTC, but for some reason its often stored behind the pharmacy counter. Which means you get to ask the pharmacy tech for it and its such a weird name that you have to literally spell it out on a piece of paper for them. I buy like 6 tubes at a time and stock up. That beats having to repeatedly explain that its for rectal surgery patients. Haha. Anyway....BEST. STUFF. EVER. 
   
   This paste has menthol it in, so it soothes. It stains underpants white though, so wear a liner if you can. I felt so jipped when I first learned about this stuff. Do you know how many colonoscopies I endured without knowing about this amazing stuff??!!!? I always have a small tube in my purse for rough days. 

OVERALL

Surgery #3 was not as easy as I'd expected it to be. Apparently waking up bag-free is not equivalent to problem-free. The typical hospital stay after Takedown is 2-3 days. I was in there for 7 days, since the blockage put me back a few. Healing up from this surgery was very different than my other 2 surgeries. Although I wasn't as cut up or sore, the healing process came with a completely different set of problems afterward. In a sense it felt a little like I went backwards to when I had Colitis, because I was going to the bathroom so much at first. It took 2 months of stretching my J-pouch to its full capacity. Another downside (from the blockage) was that I lost all that healthy weight I'd worked so hard to gain. Thanks, not eating/constant puking! Oh well, I figure I have the rest of my life to attempt to get fat. Maybe someday I will actually reach and be able to maintain the 120 lbs that it says I weigh on my driver's license... 

Here's a picture of Jim and I napping on my hospital bed, waiting for me to be discharged from the hospital. (The discharge process can take literally hours...to get prescriptions arranged and legal paperwork signed, etc...)

I remember feeling so exhausted, yet victorious. I got my butt back and that was something to celebrate! Also that Kleenex on my right side was directly where my ileostomy bag used to be. Way to ruin the picture, Kleenex! Haha.

THE ADVENTURE

There is a song by Angels & Airwaves, which I connected deeply with after my final surgery. I didn't know what was just around the bend, but I knew that life felt like it was finally beginning. All those months of recovery, of waiting, of being “on hold” were over. 

http://www.youtube.com/watch?v=JMl8cQjBfqk

I particularly love the lyrics that say, “I wanna have the same last dream again, the one where I wake up and I'm alive. Just as the four walls close me within, my eyes are opened up with pure sunlight. I'm the first to know, my dearest friends, even if your hope has burned with time, anything that's dead shall be re-grown, and your vicious pain, your warning sign, You will be fine.”

“LIFE'S WAITING TO BEGIN..."

I don't know what the future has in store, and at times, I'm honestly kind of afraid to find out. I sure didn't think I'd end up re-diagnosed with stupid Crohn's Disease after all of my surgery drama! The mystery of life doesn't take the adventure out of it though. Likewise, the surprises in life don't detract from the sovereignty of the Lord. Just because things aren't panning out how I'd hoped, doesn't mean its not how its meant to be. Jesus sure knew what He was talking about when He said, “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” -Matthew 6:34 

One day at a time folks, that's how we gotta live. One step at a time, by faith.