A new light

Because I lost so much weight, I'm very self conscious about how I look. I was very comfortable with my weight before, now I look too skinny. It sucks but I'm slowly just accepting it and knowing that I'll gain it all back...eventually. It does seem to get easier day by day. My bag is a part of me now and I have a routine. It's just become a part of my day and my life. I have my days where I cry and feel sad but I'm learning to not dwell on it or continue to feel sorry for myself..it could be a lot worse.

So I'm just living my life working full time and spending time with my family and close friends. I don't go out really, not that I ever did before I got sick...but I'm definitely a homebody now. I like to read and spend time at home. Doesn't help that I don't have much energy to do anything anyway. I have been out a few times to the movies and out to dinner and things like that but no partying in my near future. Don't mind though :) ...it'll soon get better. 

Let's try this again

Alright...Let's try this one more time. As soon as I woke up from surgery, I could already feel NO pain in my butt. It was amazing. I was pissed I had the bag but happy as a clam I didn't have that pain or any stool coming out either end. This time I was only in the hospital for a few days. Recovery process was still tough once I got home but didn't have to take my pain meds as often which was a blessing in itself. 

I'm trying to remember when I went back to work...June 20th on a part time basis again. Body was still weak and still had my "hunchback"...fun fun. I was already used to the bag and had a routine of emptying it and changing it so it wasn't new to me. That was the only upside to this whole thing. 

Fast forward a little bit, today is July 22 and I just worked my regular 8 hour shift today. I went back full time the second week in July..can't remember the exact date. It was hard again to go back full time and do all that running around but my job was understanding again and told me to go back slow and to let them know if I was having trouble and needed to stop and relax. I'm no longer taking any pain meds and have no pain at all. I take vitamins and Imodium to thicken the output in my bag so I don't have to empty as often. I'm also on anti-anxiety medication that helps me sleep like a log at night :) I wasn't sleeping at all in the hospital or when I got home.

Unfortunately, it's a little scary to be on them because when I ran out about a week ago and went "cold turkey", I felt more anxious than ever. I didn't sleep that night and had horrible nightmares. My doctor said it's not good to just stop anti-anxiety meds, you need to ween off of them. When you just stop taking them, it can have a worse affect on you than how you felt before. It did just that. I felt like I was in a whirlwind. I was so anxious and hyper-feeling. It was a bad feeling and immediately got a re-fill. Now I'm weening off of them and plan to see my physician to see what we can do to make sure I get sleep at night. I never take the pills during the day. I get anxious in the morning but not enough to take them. I'm usually fine at work and don't worry too much. I'm usually too busy to think about the bag or anything else anyway. 

I've only had one bag leaking experience and that was a few days ago. In the summer the adhesive becomes very itchy and I remember scratching the crap out of it that night but I couldn't scratch where I wanted which was right underneath the wafer, the skin next to my stoma. I guess I scratched so hard that I popped the seal because I woke up at 5:30am with shit all over my bed and arm (sorry for the image)...It was disgusting. I shot up out of bed and grabbed a shirt to stop it from leaking everywhere. It was a mess, literally. Clean up wasn't bad though, just threw the clothing in the trash, changed my bag and showered and I was good to go. Not as traumatizing as I thought it would be. If it had happened in public or at someone's house, it would have been a different reaction of course. Now I'm extra careful with scratching and now I have anti-itch powder that should help. 

I see a personal trainer who is helping me get my strength back. We've only been working on stretching because that's really all I can do and we have to start from the bottom up. I have really bad back and neck problems from being in odd surgery positions and laying down so much. I'm still pretty weak and get very tired easily so we're taking baby steps. My posture has been better, I don't hunch over as often. But standing up straight causes me a lot of back pain so that hunch always comes back. She's also trying to help me gain weight by suggesting high calorie foods. I've only gained 5lbs since I was hospitalized in February. I left the hospital at 95lbs and now I weight 100lbs..just hit the triple digits the other day, was pretty exciting. Only 25 more pounds to go!! (with a hint of sarcasm and a sigh...) It's a work in progress. 

Emotionally, I have a hard time some days. I still cry here and there sometimes just for no reason. Was told my anti-anxiety medicine can mess with you that way as well. Great...I've been to a support group and will be going this coming Thursday for my second time. Hopefully, I'll get the support and insight I need. I made an appointment for my second pouch study to see if I still have the fistula..I'm praying it healed so I can get this bag removed but we'll see. I try not to think about it because it stresses me out...even though it's not the end of the world and plenty of people live with an ileostomy for the rest of their lives...but to be honest, I don't want to be one of those people. I hate it and feel restricted.

Waiting Game

I continued to wait for my bottom end to heal. I went back to my doctor every 2 weeks and he would check it. It needed to be healed enough to endure a "pouch study". It's pretty much a colonoscopy but you're wide awake. It doesn't take long. What they do is stick a long tube with liquid in it and a camera attached up your butt and into the inner pouch that they made. They fill it up with the liquid to see if it leaks out of the pouch. If there are leaks, then you have to wait longer, meaning it's not healed yet. Fortunately, mine didn't have any leaks!!! But something else happened, the liquid came out my butt but my female end as well which was an odd sign. If my pouch didn't leak, I could set my date for TAKEDOWN. Just a fancy word for the reconnection of the stoma to my new pouch. Then I would no longer have the bag and that was very exciting. 

May 12th was my date for takedown. I was so anxious and just waiting for it to all be over. The day before my surgery, my surgeon called me and told me that my pouch looked good but I may have a possible fistula (when the liquid came out my female area). He said he wouldn't know for sure until he went in because it looked so small on the x-ray. My parents and I got to the hospital bright and early for my surgery. I was ready with all my butt creams and extra soft toilet paper. Anxiety took over of possibly waking up with the bag still on and the anxiety of being under anesthesia again and just the simple fact of starting the healing process all over again.

I was told the healing time would be less, approximately 2 weeks. I had taken off work for about 3 weeks just in case and had that all taken care of. Round 2 surgery and a few hours later I woke up. NO BAG!!! I remember being in a lot of pain in my butt. My pouch was working right away and I was pooping normally again. Lol. So that was good news. I got home and it went downhill from there. 

I can't describe the type of pain I was having once home from the hospital. It hurt so bad to take a normal bowel movement. It was sharp excruciating pain right around my butt hole. The skin around it was red and very irritated. I really can't describe the pain. I couldn't sit, stand, walk, poop, anything. Laying down on my side was about all and that hurt like hell too. I had no idea what was going on or why I was in so much pain. It wasn't making sense. On top of that, I had stool coming out of my female part, which was the fistula my surgeon had told me about. He said it was so small, he figured it would heal on its own. That was extremely painful to that area too. I wanted to shoot myself (not literally) but I was beside myself. 

I thought about going to the ER a few nights because the pain was so bad and my pain meds weren't working which was a surprise. So surgery was May 12th and I went and saw my doctor May 23rd for a check up. I told them how much pain I was in and I was practically in tears. My surgeon took one look at my bottom and told me I need to have surgery to put the bag back on asap. So I had surgery May 24th and had the bag put back on. I was crying while waiting because I was in so much pain and then pissed that I was in pain and pissed that I had to have the bag back on..ughhhhh. It sucked so bad.   

Slowly but surely

Day by day things seemed to get better according to my family. To me, things still seemed on hold. March 30th I went to work on a part time basis. No more than 4 hours a day. I was limited to lifting no more than 5lbs, not that my job required much lifting anyway. We have an office within the building that someone always has to be in in case of a crisis or whatnot. Luckily, I was given office time for those 4 hours because getting around was still very difficult. I was exhausted after 4 hours. I did part time for a few weeks then finally went back full time which was a slap in the face. I hadn't been to work since the beginning of February and now it's April and I'm just starting to do 8 hour days. It was tough but got easier.

Work was very accommodating and definitely made the adjustment back a lot easier than I had expected. I stopped the visiting nurse once I went back to work and saw my surgeon every 2 weeks. Doctor visits were routine. I would see the APRN first. She helped me through all the adjustments of the bag and helped me through the whole process. She is the sweetest woman ever and I appreciate everything she has done for me. I would see her and she would change my bag for me herself and check all my stitches...checking I mean, sticking a long cotton swab in my incision and cleaning it out...made me nauseous and hurt like hell! But it had to be done. I could never watch her do it...ick!! Then I would see my surgeon who is just as great. He would check my incisions as well and check how I was eating and feeling and all that. 

They would check my butthole where they closed me up so nothing would be coming out. It was very sore and they were waiting for that to heal before they attempted to "hook" me back up again. The body is a weird thing let me tell you. Even though I had stool coming out my stomach, I still had some liquid coming out of my bottom end, just clear. Doctor said it was normal, so okay. At first, it would leak on its own and it sucked but then it got easier and would only happen when I went to use the bathroom. Now I just had to wait. 

Still Recovering

The recovery process after my first surgery was nothing I had ever expected. Here I am at 24 years old not being able to dress myself or take a shower without someone checking in every few minutes. My mom borrowed a shower chair from the senior center so that I could sit in the shower. I was too weak to hold myself up and the heat would make me dizzy sometimes. I looked like I was on the verge of death when I came home. I was just bones, my face was sunken in and my eyes looked huge. 

Walking around my house was a chore in itself. I walked very slow and even needed help getting from room to room. It was hard to sit as well because the stitches hurt so bad. My mom would help me get dressed most of the time because I could barely bend to put pants on or socks or shoes. I felt like a zombie because I was on pain medicine at all times. Doctors told me to take one as soon as I could to beat the pain, so I was taking them every few hours. I was on a million antibiotics as well which sucked considering I am a horrible pill taker and these pills were gigantic! 

Getting used to having a "poop bag" hanging from your stomach is not easy. Don't get me wrong, I am very grateful because it saved my life but it was hard to get used to. Everything I ate came out exactly how it went down. Didn't help that my bag was clear so I could see everything and it became somewhat of an obsession. I was amazed with it and hated it at the same time. It took over my life. It was all I talked about with my parents, constantly telling them and showing them which I'm sure they hated.

Sleeping became almost impossible at night. I was used to being up every hour in the hospital that once I was home, I couldn't fall asleep or would wake up every hour or so. My pain pills took away the pain but made me feel funny and I wasn't a fan. I was so out of it and loopy half the time. I wasn't allowed to drive for obvious reasons so my parents drove me around if I had a doctor appointment or just to take a scenic drive to get my ass out of the house. God Bless them because I don't know what I would do without them. 

Emotionally, I was a mess. Physically, I was a mess. Mornings seemed to be the worst time of day for me because I'd wake up completely out of it and in pain. Then to top it off, I cried for about an hour or more every morning. I cried because of pain, because I felt sorry for myself, because I hated the bag, because life sucked at that moment. Let's just say I cried A LOT. I was miserable. 

I would try and take a small walk, as recommended by my doctor, and it wasn't a pretty site. I made it to my driveway pretty much and felt like I was going to collapse. My lungs felt so tight and I was breathing heavily. I had what I call "the hunchback". It was very hard for me stand up straight and still is because I was laying down so much in the hospital that my lungs were constricted and my body was pretty much caving in to itself. Once a week or so, I'd try to go a little further on my walks each time and eventually made it halfway down the street. Not too shabby.