Two words.....BUTT BURN!!!

Oh my WORD! THIS! Just....THIS! Okay, so when you start pooping like a regular human being for the first time in forever, its like liquid. Diarrhea. And you are going to the toilet OFTEN! I think I was going 10-12 times a day and then 5 times a night. As a result of this, your anus gets what is beautifully called butt burn. Remember that terrible, painful, burning rash I was talking about around my stoma? This is basically the same thing but around your anus and my GOSH does it hurt. This is pain is the worst pain I had ever felt in my entire life. Honestly, it got so bad that I considered marching into the hospital and having my surgeon put the gross bag back in, permanently. That's right, a single, 25 year old mom would rather life her life with a bag of poop on her stomach than deal with this...butt burn. The worst part is that there isn't anything the doctors can really do about it. Mine gave me a prescription for a numbing, lidocain ointment to put on my anus and that helped quite a bit. But if you want it to heal (and trust me you do) you want to go after this stuff called Calmoseptine. Now, this requires some balls because its not a prescription but you have to get it from the pharmacy. Also, they generally don't stock it so you have to have them special order it. Also also, you usually have to spell it out because no one knows what the Hell it is, so you basically need to tell them to order some butt rash cream. But it works and it works well, SO GET IT! It takes 3-6 months for your anus to scar over and not burn anymore, so sit back and prepare for a long and difficult healing process.

ITS THE FINAL COUNTDOWN!! Or....surgery

FINALLY! This was going to be over. My father drive me to the hospital to have this stupid bag of poop removed from my stomach forever. Over a year had passed and I was so ready to show off my belly again and wear tight clothes and.....JEANS! Oh jeans....I had been wearing yoga pants and PJs since the bag was put in and I was ready to jump back into my old wardrobe. Oh yeah, and I would be able to poop out of my butt. I know, it's weird seeing someone so damn excited over being able to poop but seriously, you will never understand what this process is like until you actually experience it. Being excited for something as strange as poop is normal for us colitis sufferers (am I right?).

This surgery was just like the others. Small, cold room, strange people, IV, revealing hospital gown. When I woke up though things were very different. If you read my last posts you know about me not having pain meds when I woke up (it was bad). I didn't get them this time either but it wasn't as bad and I could understand a little better why. You see, pain medications like morphine block your bowels and make you constipated. When you're trying to use your newly built bowels for the first time in over a year constipation is bad news, so I could understand why they kept me off them. However, I was groggy for a lot longer than usual when I woke up, it was strange. It's also strange since after you wake up, all the doctors and nurses eagerly await your fart. That's right, they want you to fart (takes about a day or so). When you do they allow you to eat. I spent another 5 days in the hospital and went home, finally able to poop and use my newly built colon, but this isn't the end of the story. It takes months to feel better and I ran into way more bumps in the road than I had in my previous surgeries.

Is this over yet?

No....no it's not. After my second surgery I was given a new type of illeostomy bag, one that had a thicker wax seal but wasn't much different than the last one. After the infection was dealt with things were fine. I was dealing with one problem though that I could not find a solution too....the skin rash! Oh...my....gosh this was terrible. You see, when you have a bag on your stomach and your intestine is constantly pumping out diarrhea into it, you're going to get skin contact, this is normal. However, when the new stoma was made, the whole where the feces came out of was on the side rather than on the top (this was probably due to the rude doctor I had to deal with and who really needs to lose her job....*cough cough*) Anyway, because of this the feces that was coming into my bag was getting under the wax seal of the bag and not only did this lead to the occasional leak and terrible midnight wake up call, but it also led to a horrible, burning, rash type of something around my stoma. I could not for the life of me get it to go away. It burned and hurt and nothing helped. There were nights when I would pop extra pain pills and lay down in tears because the pain was so bad.

I did however (eventually) discover that changing my bag daily helped a little. The only problem to this was I had to order supplies and extra bags ALL THE TIME! One bag should typically last 3 to 4 days, but I was changing them daily. So I had to call and tell the guy that I needed more every few weeks and had to tell him I needed illeostomy bags and it was embarrassing but I did it. I also had the thought that the final surgery was coming up and after that everything would be BETTER! Right?! Right? Please tell me I'm right.....(Hint.....it doesn't get better for a while.)

Surgery #2, Rectum removal and colon re-build plus an infection, just for fun

It was about August when I decided to go in for my second surgery. This one would involve the removal of my rectum. It would also involve the building of what's called a J-pouch and re-attachment of my small intestine to my anus. A J-pouch is when they take some of your small intestine and make an internal bag where your feces will be stored in between trips to the bathroom (once you're all put back together of course). This surgery is the most invasive of the 3 so be prepared. Also, for some UNKNOWN reason when I woke up they decided to keep me off pain meds. Did you hear that? NO PAIN MEDS! I had Tylenol. Want to know how that went? A little something like this;

When you're asleep, they pump you with pain meds so you're okay when you first wake up. So for a while I was good. I asked what I would be getting for pain and they told me Tylenol. Right there I just saw bad times coming in. I asked why and they had the nerve to tell me that I had agreed to it! Now, if anyone knows me, you would know that when it comes to things like this, the more out of it I am, the better. I would NEVER agree to something like that, and I had to call my sister, who was there, so she could tell them I never agreed. Still, they stuck to their guns. So that night when  pain started to roll in, I lost it. I told them I needed "the pain button" (they usually give this to you when you wake up, it's morphine injected into your IV with a button so you can control how much you're getting). They finally said they would give it to me and I was relieved, but no one came. After an hour I started to shake, sweat, cry, and scream in pain. I threw anything I could get my hands onto, why I still don't know, it's not like it made me feel any better. Another hour passed and finally the doctor came in a hooked up my pain button, I felt better within 10 minutes. It was awful...

Things were fine after that party. I spent 5 days in the hospital, laying in bed watching TV and getting free food (which was surprisingly delicious). I felt better and went home feeling fine. That lasted about a week. Slowly, I started feeling weaker and weaker, and then dizzy. It was bearable at first, but got to the point to where I couldn't walk to my bathroom without being afraid that I would fall over. It got so bad, I handled it for 5 weeks before having to go back to the hospital for another week. Apparently, during my second surgery my doctor missed a stitch and all kinds of nasty things were leaking out and collecting into an abscess next to my spine, pushing against my tail bone and causing incredible pain in my back. This was fixed too, and all was well, once again. I never felt 100 percent healthy after this surgery. I always felt dehydrated and just, kind of bad. This was a rough time for me.

Surgery #1, colon removal

I was driven to the ER by my boyfriend and they brought me back immediately. The first thing they did was give me fluids, lots of them. The shots and IVs quickly got to me and I became very angry very quickly. So they gave me what was called a PICC line, or super IV in my arm above my elbow. To anyone who hates shots, if this offered, take it. It looks horrifying and painful but it really isn't. This is a picture of mine. It's an IV line in your artery that has 3 lines so you can get 2 IV medications and have your blood drawn without being poked. It saved me a lot of stress.

A felt better in a few days after they had pumped me with blood, fluids, and a bag filled with IV "food" which was basically just vitamins and calories to replenish what I had lost. Once I felt better I met with my doctor Zilla, and another man I had never met, Dr. Ivatury. They gave me two options, I could continue trying medications, or I could get surgery and remove my colon, the only cure for colitis. Of course, there were serious side effects to surgery, but I had been fighting a losing battle with the medications for over a year. They tried to get me to stay on the medications but I just couldn't do it anymore, I had a daughter, I needed to get better. I told them to cut the damn thing out, and that's what they did. On the plus side, my sister managed to find me a colon stuffie that I love and the doctors found absolutely hilarious (only she could managed to find something like that).

I felt a million times better after the surgery. However, the surgery would have to be done in three different parts, spanning over about a year. During that time, I would need to wear a colostomy bag. Meaning, because my colon was gone and there was no way for my food to leave my body, I would have to have my small intestine sticking out of my stomach slightly, covered with a bag for my feces to be collected. This bag would have to be emptied several times a day and the bag itself needed to be changed a few times a week. Some things to consider if you're looking at this option; It usually is temporary, however, you can choose to have the bag in place permanently. Also, you will have ZERO control as to when poop will come flying out of the thing. So when you're changing the bag chances are, you're going to poop all over yourself, especially when you're first starting out. If you're squeamish, you may want to re-consider.

This bag took a lot of getting used too, especially since I was a young woman with a nice flat stomach who loved dressing up and wearing her bikini by the pool. Not anymore. A few days after the surgery I also got a big infection, which basically involved my stomach exploding and covering the bathroom in blood and pus, and a trip to the ER. They had to open the incision and leave it open, making for an additional 2 months of recovery. I also opted to put off the second surgery for a few months so that I could have the summer to enjoy. Yes, I had the bag, but I felt like myself. I could eat and sleep and run, play with my daughter, I even started teaching her how to swim that summer. The first surgery was probably the easiest although it required the longest recovery time. A random side note, I got my two kittens during this process, these are them in the photo. They are so quick to cuddle when I'm sore and recovering and helped a lot to reduce my stress. My babies <3

Colonoscopy day and a dramatic dip in my health

Boy was I nervous. Would it hurt? How much would I feel? How much would I remember? How long would it take? All of these people are going to see my butt. But even worse than that, I need an IV. OH GOD DO I HATE SHOTS! Especially IVs, those needles are HUGE! But, I got through the IV, was wheeled into the room, they asked me to roll over onto my side in the fetal position. All I could think was "Here it goes, this is it, I'm going to...." Then nothing. I was asleep, dead as a door-nail. When I woke up I was back in the room with my boyfriend sitting next to me playing his DS. I asked him what happened and he said that they had brought me back in about 15 minutes ago. That was it? It was over? All that hype for that? Let me tell you, if a colonoscopy is something you're afraid of because they tell you things like you will be awake, blah blah, don't let it get to you. You're either dead asleep or you don't remember much of anything.

Now, I know anesthesia works differently for different people, so maybe other people will have a different experience than I did. But honestly, it wasn't bad at all. In fact, since then, I've had to have 3 more colonoscopies and now they're nothing (except those damn IVs). After the colonoscopy I was officially diagnosed with Ulcertive Colitis, a disease where your colon becomes inflamed and irritated. I was glad to know what it was and even happier when she gave me medication. I thought, finally, this pain is over. I started taking the pills three times a day like I was supposed too and for a while, they worked. I felt no pain, no cramping. I was no longer having to go to the bathroom several times a day and for once, I felt better. Sadly, that did not last. After being on the initial medication for about 3 months and having great success with it, the symptoms did come back and they came back worse than ever. So I was put on another medication in addition the first one, to no avail. After the pills stopped working, we moved onto the next step, IV medications (I just could not escape these damn IVs). This is when things started to roll downhill quickly.

You probably could have guessed that the IV medication did not work....of course. So I was put back onto the pills. I was bleeding so much that my hemoglobin level became dangerously low (it was at a 7 and should have been at 14). So I needed to get a blood transfusion (guess what THAT required? Yup, an IV.) So I did that, which took about an hour. When I got home, I threw up and knew that this process was far from over.

On Thanksgiving Day was when shit hit the fan basically. I was still bleeding, still cramping, having a hard time eating and sleeping, weak from blood loss. On this day is when the vomiting started. It started to happen daily, usually after dinner. I could feel the strength just being ripped from my body and the doctor could do nothing but give me more pills. In no time, I was vomiting after everything I ingested, including water. VERY quickly, I became dehydrated, malnourished, my hemoglobin level continued to drop, I was dying. Never in my life had I been so afraid of dying. Three days after Christmas, I was rushed into the emergency room at DHMC.

An embarrassing trip to the hospital

Want to know the biggest reason I put off going to the hospital? Having to explain to a doctor, in great detail, that my rectum had been bleeding and I've been pooping several times a day, ugh. But I did, he asked a lot of questions that I did not want to answer but THANKFULLY he didn't want to look at my butt. He referred to me a Gastroenterologist at a bigger hospital, and sent me home. One thing he did say that worried me though, they would do a colonoscopy.

Don't know what that is? Neither did I, so when I got home I looked it up. Apparently they give you medicine that doesn't put you to sleep, but makes you 'loopy'. Then, they stick a camera in your butt and look all the way up through your digestive tract. Well that wasn't going to happen, so I never went. Strangely, my symptoms began to get better, so I didn't think much about skipping on the referral. However, the symptoms did return and I once again went to the hospital in Rutland. Once again I was given the same referral and this time, I went.

The hospital was Dartmouth Hitchcock Medical Center (DHMC) in Lebanon NH. I met a doctor there named Zilla Hussein, the nicest woman I've ever met. She made me much more comfortable, even drew me a pretty picture of my digestive tract! She told me I had Irritable Bowel Syndrome (IBS) and that, of course, I would need a colonoscopy to obtain a more accurate diagnosis. Now, it wasn't the procedure itself that worried me. I have this TERRIBLE fear of people looking at my....under carriage. Even my boyfriend, I don't like people seeing my butt or anything, let alone sticking a camera in it, WHILE I WAS AWAKE! Or, mostly awake as they would say. So I cried, I cried a lot. I waited the 2 weeks until the procedure and drove back to the hospital to get it done.