...and now i've come out the other side

i haven't posted anything in a long while, you know when things are good there really isn't much to say, so i suppose that's a good thing ;) its amazing to me that its already been a year since my surgery. It feels like a millions years ago, honestly it really feels like it never happened I can't describe how incredible my body feels. I'm more healthy than I have ever been in my entire life and whats better is I feel so alive. for a very long time, as I'm sure you can relate, I was like a captive to my disease. I could hardly get off the couch, god i could hardly get through a movie without going to the bathroom multiple times, forget anything else. Since the surgery I've hiked Moab twice, gone on a week long road trip across the southern US, hiked a 14er (8 hours w/o a bathroom!)been rock climbing many times and tomorrow I'm boarding a plane to thailand. I never would have done any of this while I was sick I never would have thought I would be able to. but now its not even a second thought. Of course i'm not "normal" so I do have to think about special considerations when i do things but who cares because the point is I can DO things!
at a certain point, after being sick for so long and dealing with it for so long you begin to think going to the bathroom 25 times a day is normal. its not normal! and you know while being sick i feel like i lost myself. like the woman i was 2 years ago, fun, spontaneous, alive, I couldn't be her because there was just energy and plus i was always worried about having to go to the bathroom, no way i could have gone for a walk, much less a hike. now that i don't have to worry about those same things again i have been able to rediscover who i am and what healthy feels like.
Let me tell you healthy feels great. there are still some days where I don't feel amazing, but usually by the next morning I feel back to normal. really as long as you watch what you eat and notice how it makes you feel, you can avoid having really bad days. I'm pretty chicken when it comes to adding new foods to my diet, but really even on a bad day, its really not THAT bad. I have noticed bleeding every now and then, but the dr tells me its perfectly normal, so nothing to worry about there. I have yet to experience pouchitis, though I really thought I did have it once (I discovered the hard way not to eat ice cream!) but i didn't. The studies say taking VSL#3 is supposed to help with pouchitis. I've been taking it since the beginning, twice a day, and haven't had it yet. I'm not religious about it I do forget sometimes but still, no problems with my pouch. That was the one thing I was most afraid of pre surgery, that I would have all of this done to my body only it have it somehow fail just like every other treatment, but that's simply not how it works. Because it isn't a treatment, it really is the cure. Now I'm not advocating surgery over any other method. Believe me, I would rather have a healthy, working colon any day. But this has been what's worked for me and all i can say is i don't regret this decision at all. No matter what my hesitations were, fear, skepticism, everyday i wake up and know i made the right choice for me.
as for the good stuff ;)... I'm in the bathroom about 5-6 times a day and once most nights, but not all. I'm down to just 4 lomotil a day (I could have probably decreased sooner but like i said I'm a chicken.)there was a time where I felt a big plateau and that I would be stuck at about 8times a day but you just gotta keep telling yourself that its a process and a long one at that. Maybe from one day to the next you may not notice any difference but over a week or two, you'll start to notice you feel better. For example, the time between when i finish eating and when i have to use the bathroom is getting greater and greater. This is HUGE. I used eat and have to go to the bathroom as soon as I was done, now its like 3, 4 hours sometimes. 6 times may seem like a lot, of course anyone dealing with UC knows thats nothing!, but 6, even 8 or 9 is manageable you just have to pay attention to your body. I just started grad school and I was worried about being on campus and having to use the bathroom and all of that but I've learned how to accomodate it all, when to eat, how ot time that to fit with the class break. you know you learn how to make it all work together so you can do the things you want to do. and you should do them now that you can!
When I see the dr its just a quick check up, they feel my belly ask how i feel and thats about it. No getting personal if you know what i mean ;)unless they think there may be a problem based on what i said they leave my bum alone. and the need to see the dr has tapered off as well. at a year post surgery I'm down to seeing them once a month. in about 2 years i think I'll have a colonoscopy or something similar so they can see what it all looks like, but other than that the whole recovery at this point is minimally invasive. I rarely think about it and that feels great!

Only 16 months 27 days, but who's counting

i seriously think i'm gonna get like body dismorphic disorder or something. I can't stop examining my body. Its so much smaller than when i started and it happened so fast i definately don't see myself as a small person, which i sort have become. and the fact that i have to keep such an eye on my weight i obsess over every SINGLE pound. I weigh myslef daily to make sure i'm keeping weight on. If i start losing weght it means either i'm eating the wrong things and they're going right through me, or again I'm not absorbing the nutrition, which would be worse, the diet i can fix, the other probably requires more doctors. I'm done with doctors. then too I have to get used to all the scars. my little hole has closed up and today the scab fell off so i guess its officially healed which means i can stop the peroxide cleanings so thats nice, but it didn't heal the way i expected. I thought it would scar over completely insted its like...an indentation, really it almost looks like a second belly button. it bothers me to be honest i think i look wierd, kind of freaky, but i'm sure as time passes I'll get used to it, its just an after effect that will go away with time but i definately find myself more self concious and concerned about my body. its a new and strange feeling.

i saw the surgeon a week after my release from the hospital. they just wanted to check in on how my hole was healing and see how everything was working. I've come to expect that everytime I see him somethings going up there lol. so not my favorite part but if it helps him figure out that everytings as it should i'll deal. this time he wanted to make sure that there was no scar tissue forming, I don't know what that would mean for my recovery but apparently there was none.

When i first started to use the bathroom again I was going about 14 to 15 times a day. Day ten I was able to start taking Lomotil. This is an anti dhiarreal (?) medication, it just slows everything so you aren't living in the bathroom, it takes a few days but its definately nice. I'm now down to about 8 to 9. this is great for the future because i'll just keep seeing that number drop, I'm only waking up once a night sometimes not at all. I'm only a month into this and some people are at 6 times at the end of this, I/m already almost there now! I'm so determined to be at 2 a day by teh time this is all said and done. Fabulous!

eating is no where near as fun as it used to be, its way more functional. I'm super scared to introduce new foods. I don't know why I know its something I need to do but I don't know I guess that I'm scared its going to mess up this diet plan I have going which is working so well and it'll slow my progress. but I have figured out that sugar free candies like werthers and frozen yogurt sit well so at least i can get a little bit of a sweet fix if i need it ;)

I really feel like a normal person again! when I had the bag i just hated to be out in the world, it made me anxious and angry. Now I can't wait to get out there, I'm back to my social butterfly self, flapping those wings!!! I move in with my best friend in 2 weeks and I am too excited I love my family for taking me in when everyone else was leaving me but man I am ready to get out of here lol I suppose that's a good thing though, means I'm healthy again. And man am I! the dark circles are slowly fading away, I've got some pink back in my skin, slowly but surely my body is undoing the damage that was done. we'll see though for sure once I see my primary care physician. She's the one who'll tell me what's really goin on, like if my body is finally producing iron on its own and if the vitamins are sticking. I see the surgeon in about a week and a half. let you know how it goes!

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.