Tuesday, December 8, 2009

Yeah, it's been a while..

So, my life has pretty much gone back to normal. I went back to work at the beginning of November. Got my old job leasing apartments back. Same property and everything. I was pretty stoked about that. My diet is pretty normal. I eat whatever I feel like. Sometimes I pay the price for it later, but nothing all that bad. Still getting shots twice a day, but now I am giving them to myself. It's not so bad, but was hard to bring myself to do it at first.

Ben came to visit me about 2 weeks ago. We had an amazing time. We finally got to spend some time together where I wasn't feeling like crap and in a bitchy mood. It was just like when we first started dating. I knew there was a reason I keep him around! <3

I'm also trying to get myself set up to go back to school next semester. It's currently frustrating me because the most important class I need to take is full, and I can't register for it. We will see how it goes.

Crohns and Colitis Foundation of America had the Rock and Roll Marathon in Las Vegas this last weekend. I got to meet Brevin from the J-pouch site and some of his team members from Team Challenge. That was super awesome! Unfortunately I was unable to participate, but think its really cool of those who did.

Thursday, October 15, 2009

A little bit of normality.

I haven't posted in a while because I've actually been feeling alright and returning back to my social life (a little bit). I went back into the hospital one more time for the same thing. The solution appears to be the steroid medications. SO, right now I have a home nurse who comes to my house 2 times a day to give me injections of a steroid. I have the option to learn how to give them to myself, but I can't seem to bring myself to poke myself with a needle. I was released from the hospital October 1st. 2 weeks hospital free, not too bad. I feel alright. I've managed to get out and see some friends, even made it to the gym the other day. Getting back into exercising isn't exactly exciting, but I need to get back into shape. I thin the next steroid taper is where my face will start going back to normal and maybe even help shed some extra pounds elsewhere. As far as the surgery stuff, I feel great! My incision finally healed and I am doing better than I have in a long time. I seem to be able to eat what I want. There's a couple things I haven't tried quite yet, but I probably will in a couple of weeks.

Sunday, September 20, 2009

Keeping my fingers crossed.

I ended up back in the hospital again, but I think there's a solution this time. The doctor here seems to think I am having adrenal suppression. This is the first diagnosis that has really made sense since I started feeling sick in July. He thinks it's because I've been on prednisone so long that my adrenal glands aren't functioning properly. So, the good news is that it seems to be a relatively easy fix. The other good part is that all of my symptoms fit this diagnosis and my doctor told me that he's pretty confident this is what's wrong. I haven't had a doctor be so sure about what's wrong with me since this all started. I'm feeling much more optimistic that we've got it figured out this time. THAT and isn't not really related to my surgery or ileostomy output. It's all related to the prednisone. My diet is fine, I'm taking in enough fluids, and everything else has been successful. They are going to MRI my liver again and try to get a little more information about the mass on my liver, but that's all unrelated to my UC also.

Wednesday, September 16, 2009

OKAY, sooo here's what happened... and what's currently happening.

I had my takedown surgery early because of my ileostomy output, but they were also supposed to try to take a took at my liver while they were performing the laproscopic surgery. So, while I was in the hospital the GI doctor who was taking care of me contacted my surgeon. They called and told me if I could get on a flight to Phoenix that day then they would operate on me the following day. Well, needless to say I was on a flight that afternoon PICC line still in my arm and all. I flew Reno to Las Vegas and Las Vegas into Phoenix.

When I got to Phoenix I was allowed to eat and drink up until midnight and they wanted me to check in to the hospital through the emergency room when I arrived. I waited until midnight so I could still eat and drink and I wanted to shower that night too. Travelling wore me out and by the time I got to my room at the Mayo Clinic I was just ready for bed. They told me that my surgery would be the following day at 2 PM. So, the thing that sucked was I wasn't allowed to eat or drink anything at all. I was just allowed to use these spongey swabs to moisten my mouth.

The day of the surgery they did a test to see if there is any leaking coming from the J-pouch. That part sucked really bad. They pretty much stick this tube in your bottom and fluid goes inside and they ask you to like roll on to your side while you have this thing coming out your butt. It was REALLY uncomfortable for me. It only lasted a few minutes, but it hurt and was really awkward. I hung out a couple more hours and my surgery was a little bit delayed because my scheduled operating room ended up being used by someone who had an emergency transplant. They prepped me as usual... big Bair Hugger blanket, totally awesome socks that help circulation, medications, pregnancy test (even though they were operating regardless since it was an emergency situation), heparin shot. I don't remember going into the operating room this time. I was out before we got there which actually kind of weirds me out because I don't remember them giving me that medication, but oh well.

I vaguely remember waking up.. I know I was NOT happy and in a lot of pain. I think I woke up before I made it to the recover room. They were giving me lots of pain medicine in recovery. I hung out there for a while then they eventually took me back to my room. This time I was in a lot more pain than after my first surgery. I think that's because I was feeling pretty good when I went in for my first surgery and this time I was pretty weak and sick. I definitely used the pain button. They still gave me a lot of dilaudid after they took the pain button away. They tried to just give me the vicodin tabs by mouth and torodol, but they did nothing for me. I even ended up leaving the hospital with oral tabs of dilaudid instead. I have used them all to date. I got up and walked around the day after my surgery. My tummy was so bubbly and still is. I was having a lot of gas pain in the hospital. Like I just wanted to pass gas and I couldn't. It was really uncomfortable too and pain killers didn't really help.

I passed stool I think the 2nd day after surgery. It wasn't so bad. It kind of felt like some of the leakage that occured while I had the ileo bag. I just felt like I had to pass gas and couldn't. Passing stool really wasn't so awful, just very liquidy. I didn't have any butt burn or anything up until I got home to Las Vegas. I would say about 3-4 days after I got home the butt burn took over. More about that in a second. I left the hospital on the 4th day after surgery and stayed in Phoenix one extra day. The night in the hotel was nice because I finally got some sleep. Then the next day we took an early flight back to Las Vegas. I was expecting to go into complete panic mode not having access to a bathroom again, but it's surprisingly different. If I have to go to the bathroom, the sense is present, but I don't have to go right away. I know I need to go, but I can wait a little while. I don't panic anymore. It's incredible.

So, I get home and the butt burn begins. It usually only happens when I am sleeping and have to get up in the middle of the night to go. I feel like my ass in on fire. I've used a barrier cream they gave me at the hospital, A&D ointment, and Desitin cream so far. Desitin works the best so far. I'm still experimenting. I've found that watching TV or something when it's happening is a good distraction from it. It's just frustrating for me because it's happening at like 3-4 in the morning and my sleeping pattern is all messed up. I'm not going to the bathroom all that frequently. I would say less than 10 times per day. There's some leakage sometimes so I've been wearing maxipads for the time being just so I'm not having to constantly change clothes.

Other than the butt burn, I'm a little sore still. I accidentally opened my incision a little bit in my sleep, so that sucked. The worst thing for me is that I am freaking exhausted ALL THE TIME. My appetite has decreased and I have been a little nauseous just the in the last few days. I'm right in middle of moving and can't do much of anything. I miss my boyfriend like crazy so I'm an emotional wreck on top of recovering from surgery and drowning in medical bill stress. Still, the surgery has been 100% worth it. Life just sucks right now, but it will get better.

Saturday, September 5, 2009

Takedown.. Earlier than Anticipated...

So, I had my takedown on Thursday. It was kind of a last minute emergency situation because I had such high ileostomy output. They may discharge me out of the Mayo Clinic tomorrow, but I don't know that I'm ready to leave yet. I'm still pretty sore. The pouch is working and everything. I'm not having too much discomfort when using the restroom, just sore from where they closed off the ileostomy. It's nice not having the ileostomy bag anymore, but to be honest it's kind of like trading some crappy things for other crappy things. It will get better, I just don't feel too well and the pain killers aren't helping too much at all. I'm give more details later.

Tuesday, August 25, 2009

Guess what I needed a week before I'm supposed to move....


I started feeling pretty crappy on Saturday, so I went to the emergency room to try to fix the problem before it got as bad as it did before. I learned that making that move was completely pointless because apparently all of the weekend crew in the ER (we like to call them the B Squad) cares about is getting patients comfortable and making sure there are no appendix or gallbladder problems. Awesome. Came back on Sunday... same shit. They said my labs looked fine and I wasn't dehydrated. I kept telling them that this was exactly how I was feeling before I ended up being admitted as an in-patient last time. SO, I called my GI doctor Monday (which I was advised to do by the ER nurse) and he told me to go back to the ER while he attempted to get in touch with my surgeon. I got to the ER and my heartrate was out of control again.. like 188 bpm. The EMT that was working on admitting me and the triage nurse was looking at me like I shouldn't even be conscious. They rushed me back to a room and hooked me up to and EKG machine. Much to my dismay the same freaking doctor who gave me nausea, pain meds, and IV fluids the 2 days prior (which obviously wasn't working) walked in.. they finally admitted me though. Hopefully I am not here too long because I'm supposed to be leaving in 5-6 days and my dad is arriving in Reno from Las Vegas tomorrow evening. I just really wish that I could sleep. I am so tired, but my day consists of having blood drawn for labs between 5-6 AM, shift change at 7 AM, nutrition between 8-9 AM, doctors intermittently coming by all afternoon, Lunch between 12-1 PM, dinner between 4-5 PM, Shift change for nurses at 7 PM, I usually don't see a nurse until about 9 PM, Vitals somewhere between 9 and midnight, vitals around 3 AM.. REPEAT. I'm so tired. The doctor approved sleeping pills for me this time too, so hopefully that works tonight. I am BEAT. Having MRI's done is not something I would recommend for anyone who is even remotely claustrophobic, FYI. I spent about 20 minute in a tube about as spacious as a coffin today and can't believe I didn't have a panic attack.

Friday, August 21, 2009


My 2nd (and hopefully final) surgery is scheduled for September 30th. I'll probably be arriving in Phoenix on September 27th for appointments at The Mayo Clinic on the 28th and 29th. I'm excited and nervous. Tired of to ileostomy bag, but have been enjoying the freedom of not having to run like hell for a toilet. I have about 10 more days left in Reno. Slowly working on packing little bits at a time.

Monday, August 17, 2009

As I Add More Music To My iTunes...

Well, I have learned a couple of things about my body since my surgery. 1. My cramps from my period are worse. I don't know if it has to do with not having a colon, being on a different type of birth control, or simply just getting older. That sucks. 2. When I drink, I get buzzed MUCH faster. 3. I've been oddly able to eat salad with no problems. The only foods that have made me sick since I had surgery are biscuits and gravy from Burger King and Cream of Chicken Soup. 4. My scarring is pretty minimal, the stretch marks (that I got prior to surgery due to prednisone) are much worse.

Some stupid bitch that I worked with came up to me to talk to me today. She ran her hand over my ileostomy bag and asked if I was pregnant. I'm not. Then she said "Oh, you're just fat!". Fucking awesome. I said, "Actually, I've lost about 15 pounds since my surgery, but thanks for letting me know I'm fat and look pregnant." God, I can't wait to get away from Reno people. I cut my hair and it looks awesome. I was finally starting to gain some of my confidence back about my body, so that didn't help. Whatever, she's a dumb hag. I get to taper down some more off of the prednisone in 4 days. YAY!

I have been slowly packing and getting my stuff ready to go back to Las Vegas. I've already donated 5 bags of clothes which, might I add, didn't put a dent into my wardrobe. I'm pretty excited about the new place my parents and I are moving into. It has an awesome gym and the pool is on the roof, so I won't be super self-conscious about my body if I decide I want to go swimming. Plus, the place just opened recently, so like less than 20 people live there so far. I kind of want to get on with the moving process. Being here everyday is just a constant reminder that I'm totally leaving my boyfriend high and dry and being kind of shitty about it.

I called The Mayo Clinic today to get the ball rolling on my takedown surgery. I'm hoping to have it done at the end of September or beginning of October. I would love to be feeling relatively normal by Thanksgiving. I can't get into the classes that I need to take for Fall '09 semester anyway, so now is probably the best time to have it done so I can work on healing for a few months and get back in the Spring time. I just want to finish college and have a career. It's driving me nuts that I should have my Bachelor's degree by now and I don't. LAME!

So, over the next few months I am shooting for having my second surgery, healing, getting back into school (Hoping to enter the nursing program by Fall '10, Spring '11 at the latest), losing some weight (preferably all the weight I've gained since the UC started about 30-50 more pounds), getting out of debt (with a little help from my dad). That's about it.

Tuesday, August 11, 2009

Round 2 at the Hospital/Update 2 Weeks After.

So, about 4 days after I was released from the hospital I ended up going back. I was still having problems retaining fluids. They put me on a dose of Imodium 2 pills 4 times per day. I have an adult dose of Pepto Bismol 3 times per day. (I do not suggest the cherry flavor. . gross). They recommended I drink pedialyte. I'm back on prednisone. That's pretty much it for medications, I think. I was there for about 4 days this time. I went home and flew to Las Vegas the next day to see my mom. Over the last couple of weeks I have made the decision to move back to Las Vegas. I can't go back to work and even if I could, my takedown is right around the corner and I'll have to take another leave of absence. I can't afford to pay my bills and feel bad having my dad do so. So, it's time to move back in with the parents. I have been being pretty careful about what I eat, but not 100% good all the time. So far nothing has bothered me too bad. I've found that starting the day with a bagel is usually a good idea. I drank a ton of fluids while I was there and took it easy, but I also went with my mom to find new places for us to move into. I went and saw some friends and despite the heat felt pretty good. I've been home for almost a week and I am still feeling pretty good. I haven't gotten fatigued the way I was when I ended up in the hospital. I guess my heartrate was out of control. SOOOO, I'll be back in Las Vegas at the end of August. I've been up and active cleaning and starting to pack and find things to donate before I move. I even managed to go out for a couple of drinks (with a ton of water) and felt fine. Still no regrets on the surgery. Also, my takedown is still up in the air.. It kind of depends on what kind of college classes I can squeeze into.

Saturday, July 25, 2009

Out of the Hospital

I was discharged from St. Mary's Regional Medical Center on July 23rd. So, apparently my diagnosis was gastroenteritis and dehydration. The doctors pretty much just kept me there to monitor my kidney function. They wanted to make sure I'd be okay leaving the hospital with oral medications and still be okay without IV fluids. After the first couple of days in the hospital the main problems I was having were abdominal pain, nausea every 8 hours or so, insomnia, and getting fatigued quickly. I'm still experiencing these, but I've been feeling better since being home other than the fact that it's a million freaking degrees outside. The doctors put me back on prednisone, so I get to taper off of that again. That's probably what's bothering me the most. Prednisone is definitely taking it's toll on me. I've also got antibiotics, potassium, vitamin D, sleeping, pain and anxiety medications. There are probably more, but just can't think of them right now. I was getting IV iron also which was weird because they were pretty much injecting solid black into my IV. I got up and about to go to Wal-Mart today and did okay. I just had to take it really easy and almost felt like I was going to pass out a couple of times, but I think that was more from the weather than medical problems. My ileostomy output has been pretty liquidy today which I'm frustrated about. I've been taking the Imodium and being pretty good about my diet for the last 2 weeks or so. That is probably what I'm most concerned about right now. The output hasn't been even the slightest bit formed since I left the hospital. I ate some rice a little bit ago and it appears to be slightly helping, so I'm crossing my fingers that it's just a fluke or something. I've been drinking an unbelievable amount of water and I hate it, but I have to. I'm hoping to go back to work on Tuesday. My work has been so amazing and understanding of my situation, I am so appreciative of that. I'm stuck on a low residue, low fat, low lactose diet. I haven't really been following the low lactose exactly because they pretty much put me on it after they served me 2 meals of pretty much all dairy. I haven't had problems with dairy before, nor have I since the surgery. I think 2 meals they gave me were just a bad idea since I never have a lot of dairy products anyway. I'm going to cut the dairy out tomorrow and see if that helps at all. My normal GI doctor has been unavailable for the last 2 weeks or so and I have an appointment to see him on August 7th. I'm hoping nothing goes wrong before then. I'm really anxious to see him as I haven't seen him since before my surgery and this latest episode really scared the hell out of me. That, and he's pretty much in charge of my latest prednisone taper. That's pretty much all I've got to say about the hospital visit other than the fact that I would like to thank all the nurses and staff that took care of me while I was there. If I think of anything else I'll add it.

On another note.. All of these medical speedbumps are really starting to take a toll on me. I'm constantly being complimented on my positive demeanor considering what I've been through. I try so hard to stay optimistic, but it can be truly trying at times. I'm getting to the point where I ask my self, "At what point do I just say 'F$#% it!'?" I should be graduating college this year and I'm not. I'm not even close. I worked so hard in school growing up so that I would be able to have a great career and really do something with myself. The drive that I used to have is fading all the time. It's so frustrating because I see so many people that are doing absolutely nothing with their lives and are completely capable of it. Yet, here I am... wanting to do something and can't. I've been known to completely break down in front of doctors and nurses because sometimes something will just strike the wrong nerve at the wrong time. I'll probably attribute some of the to being medicated. Thanks a lot, prednisone! I'm pretty sure prednisone causes people to lose any sense of having a filter before they say/do some things. Anyway, that's all for now. I'll keep you posted on my health and sanity. :) And FYI, still no regrets as far as having the surgery done. It's still the best decision I've made I just wish I could have known this before starting the steroids.

Thursday, July 16, 2009

Admitted to the Hospital

Saturday July 11 was the last day of my prednisone taper. I started feeling a little nauseous on the Friday night before that. I spent all the Saturday pretty sick and made the decision that if I wasn't feeling any better by Sunday that I would go to the emergency room. Well, I bet you can guess what I spent my Sunday doing. The took me into triage, gave me IV fluids, nausea medication, ran some bloode and urine tests and pretty much sent me on my way home. I felt alright for a couple of hours then spent the entire night sick as all hell again.

SO, I went to a different emergency room on Monday with the same symptoms (nausea, vomiting, light headed, dehydration, dizzy, no appetite, can't keep any fluids down, heart rate through the roof). They did the same thing... IV fluids, nausea and pain medication. They did a cat scan which didn't give them much infomation. I hung out in their ER for about 7 hours and they discharged me even though I really wasn't feeling too much better.

Tuesday afternoon was the worst. Every time I ate or drank something I would throw it back up, making me more dehydrated and giving me abdominal pain. I was really starting to get worried because I knew something was definitely wrong, but the hospitals kept sending me home. Well I go back to the original emergency room that I went to and the admitted me within 10 minutes of getting there. Started running a whole bunch more tests. Some blood and urine labs and cultures, x-rays, pumping me full of IV fluids. I told them that my surgeon's PAC recommended I be admitted for no less than 24 hours. So, after about 7-8 hours in triage, they admitted me to stay over night in the hospital until they can figure out what's wrong because they finally started taking me a little more seriously *lol* I finally had someone tell me that there is definitely something wrong and we're working on finding out what it is. Got some pain medicine, clear liquids, nausea medication, antibiotics, IV steroids and went to bed.

Today I woke up and they drew some blood. A doctor came and spoke with me and told me that my labs showed some abnormalities in my kidneys (no good). He also told me that a GI doctor from my regular GI doctor's office would be coming by to check up on me along with a kidney specialist. Well the kidney specialist told me that on Sunday my kidneys were find, yesterday they started showing signs of failure and today started showing signs of improvement. So, they are monitoring my kidneys. I've had abdominal x-rays and ultrasounds of them. My GI doctors thinks I may have tapered off prednisone too quickly. I'm here at least until tomorrow afternoon, so we'll see what happens. FYI: don't dehydrated yourself after j-pouch surgey. Bad things happen. =)

Sunday, July 5, 2009

My current list of annoyances.

I can't sleep through the night.
I can't get comfortable when I'm trying to sleep.
I'm losing weight, but not in my face yet. (1 more week of Prednisone)
My butt is sore.
I can't be up and about for more than a little while without getting tired.
Most of my wardobe is unwearable.
I'm so bored and want to go back to work.
I'm broke because I'm not working.
I want to get back into school.
It's driving me crazy that I was supposed to graduate with a Bachelor's Degree this year.
I miss spicy foods.
All the foods I like to eat are foods I'm not really supposed to eat.
Walking up 3 flights of stairs to get to my apartment.
My cats deciding to use their litter box within 5 minutes of me being nearby it.
The fact that I probably shouldn't be drinking soda, but can't stop.
Huge stretchmarks, everywhere.
It's summer and I am nowhere near the bikini body I used to have.

Wednesday, July 1, 2009

Post Script

My older blogs are on my myspace page.


FYI: My myspace blogs are a lot more vulgar.

It's great to start feeling normal again.

Well, I am about 3 weeks out of surgery. I just got back home to Reno a couple of days ago. I'm already starting to feel like myself again. The idea of leaving my house isn't something causing my extreme amounts of anxiety. Take away the fact that I can't wear my form fitting clothing for the time being and I couldn't be happier right now. I'll be off of the prednisone in about 1 1/2 weeks. I can't wait for that, my body and face will start shrinking again. I bought some new clothes to assist in hiding my ileo bag. I also found a maternity band to go around my waist which helps conceal the bag, but I'm finding that I have to be really careful with it so as to not cause leaks.
In other news. I went and saw some of my friends in Las Vegas and was able to not flake out of them due to not feeling well. It was awesome. I went grocery shopping with my dad which felt good because that's something I've always done with my dad since I was a little girl and over the last couple of years I haven't been able to go. It would crush me every time he would see if I was feeling up to going and I would tell him "no". So, that was really awesome that I could go and show him that I wasn't going because I really wasn't feeling well enough to go.
I'm still pretty sore, but nothing a little Tylenol can't help. I can't really walk around for too long because I get worn out pretty easily. My walking speed is slightly faster than a turtle. I'm mainly sore like inside my bottom where they put the pouch and around my stoma. These past couple of days are the first days I've managed to get sleep that felt restful. I definitely recommend following the low residue diet.
I'm hoping to go back to work in the next couple of weeks. I feel up to going back now, but I need to wait until I'm 6 weeks out of surgery because my job won't let me come back from a leave of absence with any restricitons. I'm also learning that gravity is not my friend. I feel like the more I'm standing, the more sore I get. I've had a couple of leaks on my ileo bag, but nothing too bad so far. It just sucks when it happens.
Some good news. I was able to travel from Phoenix to Las Vegas in a car for 6 hours about a week after my surgery. Then I hung out in Las Vegas for a week or so. I flew from Las Vegas to Denver to visit family and rode in a car from Denver about 3 hours away for a family reunion. It feels amazing to be able to travel and not panic about not making it to a bathroom. I still have to make sure the ileo bag doesn't get too full, but it's better than worrying about not making it to a bathroom at all. It is absolutely a huge step up from buying Depends at 22 years old. Then when I was flying back to Reno I stood in a HUGE security line, which I would have never been able to do before my surgery. I also managed to have a couple of cocktails on my little vacation. =)

Sunday, June 21, 2009

J-Pouch Surgery

Well, I suppose I'll start out with a short, but sweet introduction. I'm Erin and I was diagnosed with ulcerative colitis in March 2007. I wouldn't say I tried every medication out there for colitis, but I tried quite a few. Asacol, Colazol, Lialda, and Sulfasalazine just to name a few. It basically got to the point where I couldn't be below 20 mg of Prednisone without having problems. I've watched my body inflate like a balloon and cause a lot of frustration for me. I mean, I'm 22 and my body looks like a freaking road map, every time I started to go back to my normal size, my UC would flare and I'd be back on the steroids. Not to mention, buying Depends has got to be the most humiliating thing besides the reason behind having to buy them in the first place. I'm 2 1/2 years behind in college after getting straight A's in high school. My attendance at work sucks. Needless to say, I decided it was time for surgery. I'm not one to wait around to see if the next treatment will work, I figured I'd get rid of the problem entirely.
After much convincing, my parents got me to have a consultation at The Mayo Clinic in Scottsdale, AZ. If I didn't think that the surgeon was such an amazing woman, I probably would have gone elsewhere. Her confidence just blew me away, I just thought she was awesome. So, I scheduled the surgery. I had to be in Phoenix 2 days early. So, I got there Monday June 8th. I had appointments scheduled all day Tuesday to make sure I was okay to have surgery and be under anesthesia. Then, I checked into surgery on Wednesday at 7 AM. They started prepping me around 7:45. For the ladies out there, they do pregnancy test you before the surgery... like right when they are prepping you. I was so fortunate (not) as to start my period about 15 minutes before they wheeled me into surgery. Awesome. They just gave me a pad and this pair of completely awesome stretchy underwear since you can't use tampons when they are operating. They got my IV ready warmed me up with an inflatable blanket called a Bair Hugger and gave meThe a shot of Heparin in the back of my arm (Oww). My parents came in to see me before they took me in, then they wheeled me into the operating room. All I remember from that is there was people all around, it was bright and smelled weird. The surgeon told me not to be nervous and that I'd be alright. Then I was out. I think it was around 9:15 AM when they started.
All I really remember about the recovery room was that it seemed very dim. It's all pretty much a blur. I just know that I was bored and was wondering when I'd be out of there. My mouth was SO dry. I got to my room around 4:15 PM.
When they took me to my room both of my parents were there. They asked me if I wanted to try to move myself to the hospital bed or if I wanted them to lift me with this machine they have. I opted to move myself. I actually wasn't feeling too bad, granted I had a lot of pain medication. They gave me these sponge things that looked like lollipops and said I could dip them in water to help with my dry mouth since I wasn't allowed to drink anything. I used them a lot. The pain medication that I had a button to was Dilaudid. The pain wasn't too bad, but the medication was making me itchy. They gave me benadryl for the itchiness. I kept dozing off and having conversations with people in my head. I kept asking my mom if I was having them out loud. Then I pretty much just slept. The night nurse came in to give me Heparin shots (lame). I opted to get them in the outer upper thigh because it seemed like the lesser of the evils. I did have some awesome leg wraps that I'm pretty sure help the blood flow, but it was like having a constant calf massage.
The next day they let me have water and clear liquids. Later in the evening the nurse asked me if I wanted to try to walk. I took a couple of laps around the hallway. I finally got to see the scarring. The surgeon did a laproscopic surgery. I have 5 small incisions, about 1 cm each. One of those is from the JP drain. The incision that they removed my colon (6 ft) and my appendix from is vertical along the side of my belly button and about 1 1/2" long. Then theres the stoma, of course. I sat in a chair for a while which felt alright. I actually was feeling better walking around and sitting in chairs than I was being in the hospital bed. I did a little more walking, then went to bed. That JP drain leaked all over me the entire time I was in the hospital. That sucked because I was constantly having to change the dressing on it and change the hospital underwear.
Day 3 they took away my pain button, I was very sad. They also pulled out the catheter. I think that's probably much worse for guys than it is for girls. It just felt weird. I had a little trouble emptying my bladder, but I eventually got that under control. I didn't really do much walking because I was getting up and down from my hospital bed trying to go pee so many times. That night they gave me solid food for dinner. I was happy because that was when I started getting hungry for something more than clear liquids. I had an ostomy nurse come show me how to change the appliance and how to empty it. After that I was comfortable emptying the ileostomy bag by myself, so I would empty it and write down how much there was for the nurses.
Day 4 was kind of the same thing. 1 Heparin shot in the late morning/early afternoon, 2 from the night shift nurse. Around 5 AM they came to draw my blood every morning. They checked my vitals every few hours, came and gave me pain medicine. I was unhooked from everything but the JP drain. The doctors told me I would probably be discharged the next day. That night I went down to the hospital cafeteria with my mom. That was fun. Everyone seemed pretty impressed with how quickly I was recovering.
Day 5 they came and did the same routine stuff. A doctor came by to take out the JP drain. That felt weird, kind of uncomfortable. They told me I was going to be discharged, so I was excited. I was out of there by about 11 AM. My parents and I went to our hotel and I changed clothes. I was feeling good enough to go to Wal-Mart with my dad to get some things for me to eat on the low residue diet. I felt good enough to be up and about, but ran out of steam pretty quickly. I had to stay in Phoenix for 3 days after they released me. I pretty much just relaxed, but went out a couple of times. I went shopping with my mom for some ileo bag friendly clothes and went to dinner at Dave & Buster's with my parents. For the most part my back and butt were hurting worse than the surgery pains. My stoma has been sore especially from the adhesive stuff that the appliances have on them. I can sort of localize where the pains from the surgery are. Every day since I've been out of the hospital I've had a hard time getting comfortable enough to sleep. I am a stomach and side sleeper, so it's been kind of annoying. I'm currently 11 days out of surgery and it's the first day my back hasn't been too sore. I'm still taking the Vicodin they prescribed me. I feel better when I'm up doing something. My surgeon laughed about how active I was 1 week out of surgery, but I definitely get worn out fast. I am so happy I went ahead and had surgery. The ileo bag has leaked a couple of times, butI haven't felt this good in 2 years. This is the first time in so long that I haven't been afraid to go anywhere for fear of not making it to a bathroom. I only wish I had made this decision sooner. Now I'm just waiting for the 2nd surgery, which should come around late September or early October.