Oh happy day!

Aw yeah feeling good. I got home just in time for the super bowl, and it was my mama's birthday so it was really the perfect day to be released from the hospital. My hospital stay wasn't as traumatic as I thought it would be. They pretty much left me alone the only time the nurses were in my room was to clean out my wound and give me benadryl. Mostly i was super bored and I slept a lot. I have this weird reaction to pain pills, especially the intravenous stuff and it makes me super itchy so i was getting a lot of benadryl along with the pain meds. I was mostly afraid the hospital would be the worst part as far as being able to keep control of my bowls, I pictured messing a lot of bed sheets, but that never happened. In fact I haven't had any control issues so far, so that makes me feel Really good about the future!

I'm really pretty impressed at how good I feel. Compared to the first surgery I'm in no where near as much pain. I am sleeping a ton though, lots of naps. My life pretty much revolves around eating and going to the bathroom, it's about 14 times a day right now which is so much and feels annoying, but it also feels great because I know that number is only going to get smaller and smaller.

My little hole was so freaky at first. I mean there's literally a hole in my belly! You have to clean it out twice a day with one part peroxide three parts water, or you can take a shower and let the soap run over it and then just clean it out once. The first shower I took really freaked me out I was so nervous to let the water touch it, but it didn't hurt in fact i could hardly feel anything. My mom cleans it out for me b/c it's easier to be laying down while it's being cleaned so it's hard to do yourself. I can't even feel a thing while she's doing it.

I just really can't believe I feel this good. I had my doubts while I had the bag but now I'm just like why didn't I do this sooner! The first few days home my little bum was not happy I will admit. Its basically the same thing as a leak in your bag. The stool coming out is still very liquidy and that liquid is acidic so the skin on your bum gets irritated. You have to use desitin or some other zinc oxide cream/gel. It does help but sometimes you just have to be prepared to feel like you're on fire. I imagine this too will become less of an issue as time goes on.

Woo hoo!

Done and done! The take down was yesterday and it was amazing! Thid time around the surgery was super fast, only took an hour, as opposed to 7 for the last one. And. I was up and coherent pretty quickly this time around too, part of that might be attributed to the fact that this was a. Morning surgery, and not in the middle of the night ;). So i started walking later that day, still npo but I have all the ice chips and Popsicles my little heart desires.

So like i said they put the stoma back inside my body but turns out they didn't actually sew me up. Well not really anyway. They did sew up the muscles, but the skin layer is still an open wound and it will just have to heal and close on it's own. The nurse explained it's because stool was passing through there, and even though the stoma was stitched in place it's just asking for an infection if they were to sew it up. So right now it's packed with a sponge and covered with gauze.

Other than that i really feel pretty great. This is the first time I've been in the hospital and I'm not sick. It's almost like I'm just here for observation, for them to see how my body does. Once i pass gas i can start eating food, once i start eating and if I'm handling food well, then i get to go home. Oh man I am happy!

Tomorrow, Tomorrow I love You Tomorrow!

tomorrow morning is my take down woo hoo. in not even 12 hours I'll be done with the worst of this (At least for me). See the way I figure it if i have to go to the bathroom at first 12+ times a day, whatever, thats nothing, I've been there and then some. To me just about anything is better than this bag. Let you know how it goes! PS I finally got around to posting those pictures.

Bring it on!

Today i had my final dr apt before the take down surgery. Well actually it wasn't really a dr apt so much as a pre op procedure, my surgeon wasn't there for it. This was the enema/xray. There 's a specific name for this enema but hell if i remember. It was an outpatient procedure at the hospital. Apparently you're supposed to be npo for this but no one told me that, I was gonna be so pissed if they made me reschedule! So they put this little tube up your little bum and the liquid goes up there then the tab,e i was laying on had a cat scan like apparatus that pulled out and then an x Ray that came over me. They have me turn over on all sides while the contrast is inside me and take x rays. The point of the enema is to look for leaks in the pouch. If there are none then I'll be good to go for the take down. I'll find out in a few days, the pa said it takes about 2-3 days to get the results back. While i was laying on the table the most amazing feeling came over me and i couldn't resist a smile. I just felt like this was right. I've been a little nervous that this test would reveal leaks and I would have to keep the bag, which even though i said its getting easier to deal with doesn't mean I want to have it one second longer Than I have to. But I'm not afraid anymore I'm not worried that I shouldn't have gotten this surgery, i know this needed to happen and i am on my way to a blissful existence without pills or shots! I can't tell you how excited i am to have this surgery in less Than even one week. It's such a weird thing to say because who looks forward to a surgery, but this is going to give me my life back and how is that not the most exciting thing. I mean my descent into sickness was so fast I really can't believe that I would have miraculously gotten better. From may to december I was on steroids, then remicade which I had a severe allergy to, then humira, there wasn't really anywhere else to turn. And you know that disease had taken enough from me. During my hospitalization I lost my job, my apartment, my relationship, not to mention a major organ. But I suppose that contributes to the excitement b/c I have absolutely nothing holding me back. I can do anything, anywhere in the world, and i plan to.

To admit i am so over dealing with this ostomy bag. I try leaving the house and going to do "normal" things like going to target, out the the movies things like that but i just get so anxious I kind of turn into a bitch. The bag fills up and it's just like pulling on me, it hurts something awful and it scares me that I'll have a leak out in public and I just sort of freak out. It doesn't help that none of my clothes fit, I'm down 20 pounds I weigh 130 now, went from a size10 to a 4 and i worry that the weight loss will continue as my pouch heals. I know the more often you use the bathroom the more likely you are to loss weight.

But at the end of the day i consider myself immensely lucky. You hsve to. The fact that this is even possible, that while its a huge thing and quite intrusive, there is an option to end the suffering and gain a healthy active life is beyond amazing.

Less than a week until my stoma is gone for good. I am so excited.

so this is a picture of the bag and kind of what it looks like on your (my) body, they make ostomy pouches that help make it a little more discreet in clothing but I figured it will be gone soon enough why bother


then this is what my stoma looks like without anything on it.




******I've been meaning to post pictures b/c i know some of this stuff is hard to visualize, i just haven't had the time, actually I've had nothing but time lol I just haven't done ti yet. I promise I will. I've debated whether or not to pit up pictures of my stoma, do i really want to be that vulnerable? But i think it's the best idea to show the reality of what this is.

Let's get scientific!

T minus 2 weeks and 5 days until my little friend the stoma goes back inside my body. That is if everything goes right at my next dr appointment, still, I'm counting the days.

One reason I started this blog was to give people considering a surgical option as detailed an account as i could. Going into this i had almost no idea what to expect. Dr's can only tell you so much, they can't tell you what it's going to FEEL like physically or emotionally. And I'll tell you at times it is hard! Like I've said before i,m pretty sensitive to bodily functions and i get grossed out easily so there have been times where I have been thisclose to throwing up just looking at my bag, but on the other side of it, I've gotten used to it and it's a breeze to deal with now, so in the beginning its hard, but you get used to it.

You know when my gi doctor suggested surgery I did as much research I could but all of that can only prepare you so much so I'll go through what I've learned and experienced as much as I can so far. Remember though every body is different what i have experienced might not necessarily happen to you, but all i can talk about is what I've lived.

So the surgery itself, at least what received, was a colectomy (the removal of the entire colon) and a partial loop ileostomy (thats my good friend the stoma)and they took out myappendix just as an added bonus lol. This is all done laproscopically(?) which means they make small incisions in you stomach and use lasers to cut the connective tissue Of the colon. I have one in my belly button, one directly above it and then one on my right side. Then they make an incision kind of around the bikini line and thats where the colon comes out. Its a pretty good scar but I've already noticed mine getting smaller. The only other scar I'll have is on my left side where the jb drain was, oh well that and when they put my stoma back in.

So the stoma is a portion of the small intestine that they have kind of re routed through your abdomen, so now its outside of your body and thats how you produce waste, at least that's how understand it. They make kind of a slit in it so the waste can exit, and in my case there are
2 one on each side. All of this is done in your first surgery and they also create your j pouch at this time, but in most cases you won't actually use it right away. My surgeon said if a person has Been on steroids within the last 2 years They need time to let the pouch heal, steriods aren't especially conducive to healing. If you haven't been on steroids then you can start using the pouch right away, the healing time for this first surgery is 6 weeks. Your surgeon will probably want to see you sometime during the recovey. I went to mine one week after i got out of the hospital and then I'll see him again at the 5 week mark. At this next appointment it's actually an outpatient procedure where they give you a contrast enema, which will be super exciting, and then they will take x rays to see if there are any holes in your pouch, if the contrast only shows up in your guts then everything is dandy and you're surgery should be a week later, if there are holes then you just have to wait a little longer. The take down surgery is just that, they put your stoma back in and sew you up, as far as I know that's all they really do for this one so it sounds like the physical recover as far as pain is a lot less intense, but getting used to the pouch can be a whole nother story.

I sort of don't know what to expect with this next part of this ordeal. I'm a little nervous because the word incontinence has come up a few times in relation to getting used to using the pouch. I guess at first because it's so much smaller than your colon and really not built for the purpose of actually holding any waste the first little while it doesn't want to really hold anything and you have to learn to control it, basically you have to re learn how to use the bathroom. There is a diet I was given that if you are very strict with it it should be able to cut your healing time in half. You basically start with the basics and add one food at a time and see how you take it. A food diary is super important so you can keep track of this and really its better to keep one from the beginning that way as you eat things you can chronicle how your bms look, foods that make it thicker, keep special track of and eat lots of it while you are recovering from the second surgery. A lot of people notice that corn chips and other corn products really thicken I've also noticed pita bread really works wonders. Anyway my suggestion is indulge now before you have the take down b/c you really can't eat sugar, milk, soda things like that for quite a while afterwards. And it takes about 18 months before your pouch is fully healed.

The ostomy bag is pretty easy to use, but it does have it's own complications. I say find a way to empty it that you are comfortable with. The pamphlets I got say to empty in the toilet, sitting on it or kneeling beside it. I'm not down with that so we got some containers form the hospital and I just empty into those and then empty that into the toilet and wash the container out, but find a way that works for you. The first
few weeks are the hardest, especially the first couple of times you change it. You have to be really careful with your skin, its hard, but leaks will probably happen and the problem is the waste is very acidic so when its on your skin for a long time the skin just gets raw and very painful. The products you put on the skin to help the bag adhere can really just make it worse and the problem is when skin is raw like that it's moist so it can mess with the adhesive and you get more leaks. I've gone through 3 bags in 24 hours. Not only is it frustrating but it's pretty painful. They make something called stoma powder, it really helps with this. You can also get a blockage, so stay away from nuts, seeds, and really most fruits and veggies especially Chinese vegetables. B/c you're supposed to stay away from fruits and veggies, vitamins are really important, but talk to your dr.

There were a lot of myths in my mind before I actually decided to go through with this. Every gi dr i spoke to told me there was a good chance of infertility, one advised me to take some eggs out and freeze them. This is not really true it turns out. The possibility is there, because the uterus kind of sits on top of all of this and scar tissue can form, but there are plenty of women who have had this very same surgery and had children naturally. My surgeon suggests that you have a c section b/c the important thing is to keep the sphincter intact, but not all drs advise that. I was also worried about the j pouch failing, I had failed every single treatment I was afraid that this would fail on me too somehow and I would be stuck with a bag forever. The nurse told me very simply that this is not a treatment, it's a cure, there is no failure. Your body gets used to its new equipment and even as you age your body doesn't change how it works, it's not like as you get up there in age it won't work just as well, so tahts comforting. There is such a thing as which happens to everyone. Its just an irritation of the j pouch which is basically diarrhea, blood, more frequent trips to the bathroom, but you get antibiotics and it's gone right away, and as time goes on the instances of pouchitis basically fade away. I've heard that your diet can have a huge affect on that as well

There's a lot of stuff Going on with my new "plumbing" and honestly sometimes i still wonder if i made the right choice, I mean in my heart of hearts i know i did but still its a little scary to think maybe I could have held on just a little longer and could have kept my colon. It's funny the whole time I had uc I felt so alone, I felt like I was the absolute only person within a hundred mile radius dealing with this but now I have met at least 2 people, one right next door who have the same issues. But sometimes meeting them makes me more doubtful, they've been living with it for 20+years and I'm just thinking damn, was I too hasty? What if this doesn't work. The what ifs definitely fill my mind especially as I get closer to my take down surgery.

2 steps forward 1step back

The last few days passed pretty normally just up and walking trying to Get healthy etc. On Sunday night (the26th) that was a pretty tough day. They took out my jb drain which is in your side and collects surgical fluids that was the most awful feeling oh my god i can't even explain it,and afterwards it just hurt so bad to breathe, like the wound would just open up, still feels like that to some extent. That night was a hard night. I kept feeling so much pain, I mean incredible pain. And I spiked a fever of 103. My nurse who was wonderful tried everything she could think of to get my fever down and figure out why it was happening, I got a chest xray at about 5am and many different samples were taken. I eventually slept...and slept...and slept. My surgeon came in mid morning and told me I would get to go home. I would have been dancing if I wasn't so exhausted. I kept sleeping through the afternoon and eventually around 4:30 on the 27th My mom took me to her house where they had prepared a place for my man and my puppy to stay with me while my mom and her boyfriend watch over me.

I hadn't eaten much just half a bagel w/cream cheese so the first thin I did was eat and then I promptly fell asleep again. I felt so weak and fatigued, I Wally should have listened to my body but I was just so happy to be out of the hospital. My mom tried to get me to go to bed, so did my boyfriend but I didn't want to budge, my mom took my temp and it was 102. She called my surgeon and he told us to come right back to the hospital. Ugh it's so frustrating it's like I'll never be able to leave this place. We were in the er forever. I felt so nauseous and they kept giving me meds but i threw up anyway. I had a ct scan and another round of samples.

Long story short I was readmitted turns out i have a uti which if you have a folley catheter I guess is pretty common, so thats fun. I'm on some major antibiotics and won't be here much longer but I have hit a wall. I'm going on my 20th day in this damn place. I slept maybe 2 hours last night. There's so many lights and noises and people coming in and out it's so hard to close my eyes and relax. But the good news is nothing went wrong with the surgery and I will be home very soon.

Merry Xmas!

Happy holidays everyone. I'm feeling a little festive today, if only I could stay awake longer than an hour lol. The days following the surgery have been a roller coaster in many ways. The most important thing to do after this operation is to keep your body moving? You don't want to because the pain can be incredible if not unbearable but its the only way you will recover quickly. I can't tell you how motivated i am to get well, not to just to be out of the hospital, but so that I can Get on with my life. I am so ready to go on road trips and long vacations, to go camping and not be always looking out for the bathroom.

The day immediately following the operation I was in so much pain but I knew i had to get up and move. The surgeon says its not as important how long you are exercising but rather how often. So i don't so much need to be doing laps around the 3rd floor of the hospital, but I should focus on short walks around 6 times a day. He also said its very important to breathe deeply and really work those Ab muscles! Again you're really not gonna feel like doing it at all but it is so important. I've been walking at least 3 times a day since Tuesday. It hurts quite a bit to get up out of the bed but the nurses and cna's are so helpful, they waited and let me take my time. Standing up is a whole other story. At first it felt like my organs were like...readjusting, sort of like gravity was pulling them down, it was the oddest feeling and pretty painful. The first few days i couldn't make it very far and I cried more than once b/c the pain was so great. It takes a lot out of me to walk. Usually after a walk a nap isn't too far behind.

Yesterday Was a pretty awesome day, they took my catheter out so I got one less tube coming out of me. Its good b/c now i get to use the bathroom but now i have to GET UP to use the bathroom which is chore when I have help, i was a little worried about getting up by myself in the middle of the night but so far no issues, plus if I ever needed help the nurses are close. I also got my NG tube taken out of my nose. This tube has been one of the most annoying things ever in my life! The tube goes up your nose and down into your stomach. This is so any
bile can come up, the tube is connected to a cup that at least in my case was on the wall behind me. Getting that taken out was the
strangest feeling ever and. I swear It still feels like it's in my nose. The good thing about tubes and stuff coming out is that I'm that. Much closer to going home!

A