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.
Tuesday, December 28, 2010
Saturday, December 25, 2010
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
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
Tuesday, December 21, 2010
Well, that was fast
They came to get me at about 4:30 pm yesterday to prep me. My mom, her boyfriend and oz followed right behind. I was glad to have them with me while I was being prepped, they were a good distraction. I was so nervous I definitely cried more than once. The last thing I remember was being given a shot of something to knock me out and being wheeled into the operating room.
My poor family...The last thing we were told was the surgery is generally around 4 hours but dr mozia's so good It'll probably be more like 3 3 1/2. It lasted something like 7 1/2. I guess it took so long b/c he did the stitches by hand as opposed to using a machine. I woke up I think pretty easily and not in too much pain. My mom tried to spend the night bless her heart but it's pretty impossible to sleep around here. By about 5 am I was awake and in so much pain. I had my own pain pump but the problem was I had already been receiving so much pain medication that I had built up a pretty good tolerance so the amount I was able to pump for myself wasn't enough. It took a while but the nurses finally figured out a good cocktail that brought my pain down. It's still a pretty good and constant pain but it's sort of more like feeling sore. At first it really just felt like someone kicked me a bunch of times in my uterus ;).
I have so many cords and drains cOming out of me! I've got my picc line in my right upper arm that has my tpn (nutrition) as well as my saline solution and pain meds. I've got my ostemy bag which so far has been drained for me, but I will be taught how to do it myself in the next few days. I've got a tube coming out of my nose that drains the bile from my belly, it basically keeps me from vomiting, it's Pretty gross to look at though, just this green liquid hanging out in front of my face lol. I have to wear these legging type things that inflate and deflate to keep the blood flowing in my legs. I don't mind these so much b/c it almost feels like a massage. I'm on oxygen b/c of the amount of painkillers I'm on the want to keep me breathing :) I also wear a thing on my index finger that measures how many beats per minute and how much oxygen is in my blood. I have a drain coming out of the left side of belly to drain any surgical fluids and an iv in my left hand that is for my antibiotics. Phew!
My poor family...The last thing we were told was the surgery is generally around 4 hours but dr mozia's so good It'll probably be more like 3 3 1/2. It lasted something like 7 1/2. I guess it took so long b/c he did the stitches by hand as opposed to using a machine. I woke up I think pretty easily and not in too much pain. My mom tried to spend the night bless her heart but it's pretty impossible to sleep around here. By about 5 am I was awake and in so much pain. I had my own pain pump but the problem was I had already been receiving so much pain medication that I had built up a pretty good tolerance so the amount I was able to pump for myself wasn't enough. It took a while but the nurses finally figured out a good cocktail that brought my pain down. It's still a pretty good and constant pain but it's sort of more like feeling sore. At first it really just felt like someone kicked me a bunch of times in my uterus ;).
I have so many cords and drains cOming out of me! I've got my picc line in my right upper arm that has my tpn (nutrition) as well as my saline solution and pain meds. I've got my ostemy bag which so far has been drained for me, but I will be taught how to do it myself in the next few days. I've got a tube coming out of my nose that drains the bile from my belly, it basically keeps me from vomiting, it's Pretty gross to look at though, just this green liquid hanging out in front of my face lol. I have to wear these legging type things that inflate and deflate to keep the blood flowing in my legs. I don't mind these so much b/c it almost feels like a massage. I'm on oxygen b/c of the amount of painkillers I'm on the want to keep me breathing :) I also wear a thing on my index finger that measures how many beats per minute and how much oxygen is in my blood. I have a drain coming out of the left side of belly to drain any surgical fluids and an iv in my left hand that is for my antibiotics. Phew!
Monday, December 20, 2010
So thirsty!
They took away my water last night lol. The cna and I had a little ceremony for my last sip of water. I have to admit I am super nervous I've never had any surgery or anything the most has been a colonoscopy. This is the last day i will spend w/my colon. I want to be very zen about this not that I'm really going to miss my colon, I'm actually pretty ready to see it go but this is all new territory for me.
This has been an interesting last week I started it thinking I had a plan, i would get on the steroids and imuran and live many years w/a colon that would be healthy again. Even as I was readmitted to the hospital that was still my plan. In my heart honestly I was beyond ready for this operation! I would have had it months ago but I knew in my head i needed to try everything I could, I didn't want to have any second thoughts, plus i mean you need your colon and part of me worries about the whole western medicine approach of just, let's get rid of it, not that alternative therapy really did all that much for me lol. I didn't want to feel pushed into a procedure that is pretty major and might not be necessary.
They gave me another colonoscopy last Monday i think Just to see what was going on in there. The dr who did the procedure is the partner of my normal gi dr and he also suggested one last ditch effort.they've been pumping me full of steroids w/the hopes that I would turn a corner and they could start me on the imuran. I was tired but willing to try. The thing is I am on much stronger medication now w/humira and imuran takes about 3 months to really take effect. I did start to feel better, sort of. Less Bms little more solid but still bloody and pretty painful. I was really looking for one of the Drs to tell me ok thats it we need to operate, but they kept saying it's up to you it's up to you. I was so back and forth b/c I was really seeing improvement but at the same time not enough. I still couldn't get through a meal w/o pain meds. And I say meal In the lightest sense of the word. I really only had 3 solid meals, they have been giving me those ensure nutritional shakes and those don't even go down w/o pain.
What really made the decision clear to me was my camera. I was looking through the pictures a few days ago and in 99% of the pictures I'm asleep. And that's how its been. I have had so little energy b/c I'm not sleeping well at night having to wake up so often to use the bathroom.
It's no way to live.
I have to say that even though I ultimately was the one to say yes lets move forward and have surgery, in no way is this "elective". I NEED
this operation, otherwise I will continue to be anemic and always looking over my shoulder waiting for the other shoe to drop. I have a life to live i can't be going into the hospital every 6 months.
Since I've been in here so much has happened. They were pumping me so full of liquids that my body became so swollen. My ankles are still
pretty swollen
but now that the swelling is down I can tell I'm losing body mass again. The last time i was here I lost like 20 pounds, not really looking forward to that again. My arm is pretty sore where they put the picc line in and I swear when I breathe in really deeply I can feel it in my vein, creepy! I have been poked so much I have some pretty awful bruises.
They take my blood sugar every 4 hrs to make sure the tpn I am getting is giving me the right amount of nutrients or something. An ostemy nurse came in two days ago and "fitted" me for my stoma. This is really going to be so weird. I keep looking at the x she marked on me trying to imagine what this will look like.
They'll come for me in about 3 hours and the rest is the beginning of well a new exciting beginning!
This has been an interesting last week I started it thinking I had a plan, i would get on the steroids and imuran and live many years w/a colon that would be healthy again. Even as I was readmitted to the hospital that was still my plan. In my heart honestly I was beyond ready for this operation! I would have had it months ago but I knew in my head i needed to try everything I could, I didn't want to have any second thoughts, plus i mean you need your colon and part of me worries about the whole western medicine approach of just, let's get rid of it, not that alternative therapy really did all that much for me lol. I didn't want to feel pushed into a procedure that is pretty major and might not be necessary.
They gave me another colonoscopy last Monday i think Just to see what was going on in there. The dr who did the procedure is the partner of my normal gi dr and he also suggested one last ditch effort.they've been pumping me full of steroids w/the hopes that I would turn a corner and they could start me on the imuran. I was tired but willing to try. The thing is I am on much stronger medication now w/humira and imuran takes about 3 months to really take effect. I did start to feel better, sort of. Less Bms little more solid but still bloody and pretty painful. I was really looking for one of the Drs to tell me ok thats it we need to operate, but they kept saying it's up to you it's up to you. I was so back and forth b/c I was really seeing improvement but at the same time not enough. I still couldn't get through a meal w/o pain meds. And I say meal In the lightest sense of the word. I really only had 3 solid meals, they have been giving me those ensure nutritional shakes and those don't even go down w/o pain.
What really made the decision clear to me was my camera. I was looking through the pictures a few days ago and in 99% of the pictures I'm asleep. And that's how its been. I have had so little energy b/c I'm not sleeping well at night having to wake up so often to use the bathroom.
It's no way to live.
I have to say that even though I ultimately was the one to say yes lets move forward and have surgery, in no way is this "elective". I NEED
this operation, otherwise I will continue to be anemic and always looking over my shoulder waiting for the other shoe to drop. I have a life to live i can't be going into the hospital every 6 months.
Since I've been in here so much has happened. They were pumping me so full of liquids that my body became so swollen. My ankles are still
pretty swollen
but now that the swelling is down I can tell I'm losing body mass again. The last time i was here I lost like 20 pounds, not really looking forward to that again. My arm is pretty sore where they put the picc line in and I swear when I breathe in really deeply I can feel it in my vein, creepy! I have been poked so much I have some pretty awful bruises.
They take my blood sugar every 4 hrs to make sure the tpn I am getting is giving me the right amount of nutrients or something. An ostemy nurse came in two days ago and "fitted" me for my stoma. This is really going to be so weird. I keep looking at the x she marked on me trying to imagine what this will look like.
They'll come for me in about 3 hours and the rest is the beginning of well a new exciting beginning!
Sunday, December 19, 2010
well now here we are...
the hard part about this "disease" (i'm not sure what to call it disease, condition, whatever) is that no body knows what causes it, why the flare ups come up or what to do to prevent it. I have done about all that i can think of, of course there is always probably more, but i changed my diet completely with the help of my dad and my bf. we only shop at whole foods or places like that, eat as organic as possible and cut out 99% of processed foods and sugars, don't drink, don't smoke, you know all of that. Didn't work, somewhere in mid september my body fell off that cliff again.
I started feeling symptoms again, more frequent bms, looser, bloodier, waking up at night to use the bathroom, all those old familiar bodily functions were making their presence known and then some. I started losing massive amounts of hair, i mean i know we women lose sometimes a lot of hair in the shower but i can swear i've lost half a head of hair. I grew pale again and the dark circles returned. The dr was pretty awesome and saw me during lunch and before the clinic actually opened. He gave me another colonoscopy (joy! I'll never be able to smell chicken broth again lol) and basically said its time to seriously consider surgery. H e gave me names of the surgeon and a dr who could provide a good second opinion.
I am lucky b/c I have an amazing support system. my mother and bf were at every single dr visit asking questions and it has just been so great to feel that, not to mention other loved ones who were there when i needed them. Always make sure you have a good support system, no matter who you are but especially if you have some sort of chronic anything, you can't do it alone. Even if you need to manufacture it for yourself. there are plenty of support groups that meet and if you don't want to you don't have to leave the comfort of your own house. CCFA has a great on-line community that i have found comfort in many times. Whatever you do make sure you have someone to talk to! especially with something like this its hard for people to understand b/c you look basically healthy to the rest of the world and its hard to talk about a lot of the things that we experience, but it is so important!
ANYWAY....so we talked to a 2nd and 3rd opinion. my goal was not to lose my organ, i wanted to be well but surgery just seemed so extreme to me. The other drs agreed, sort of. they thought that it was appropriate to be thinking about surgery but that there were still other options. They both thought i should try a boost of steriods and Imuran. It eased my mind but I was not looking forward to more steriods. then we saw the surgeon and that really put my mind at ease. 99% of my fears were calmed about the option of undergoing surgery.
Since about the 1st of this month i had been fluctuating between a normal temperature and anywhere between 103 and 105. I knew i would be seeing my regular gi dr in about a week so i figured i'll just wait and we'll talk to him then. But it just kept getting worse. I was taking percocet and dulodid just to get throught the day, not necesarily b/c of pain, though it was def there, but b/c those medications cause constipation and that was the only thing that kept me off the toilet literally every 20 minutes. Finally on the 11th my bf took me to the er b/c he was so nervous about my fever. I figured they'd get my fever down and I would go home and sleep it off. well that was 8 days ago and I haven't left the hospital yet. and tomorrow I will be recieving a colectomy. they will remove my entire colon and leave me with the J pouch and a temporary ileostomy bag. I am not too excited about the bag, BUT i am exstatic about the soon to be reality of being healthy again. My colon has literally been sucking the life out of me for the last year plus and i'm ready to get that life back!
I started feeling symptoms again, more frequent bms, looser, bloodier, waking up at night to use the bathroom, all those old familiar bodily functions were making their presence known and then some. I started losing massive amounts of hair, i mean i know we women lose sometimes a lot of hair in the shower but i can swear i've lost half a head of hair. I grew pale again and the dark circles returned. The dr was pretty awesome and saw me during lunch and before the clinic actually opened. He gave me another colonoscopy (joy! I'll never be able to smell chicken broth again lol) and basically said its time to seriously consider surgery. H e gave me names of the surgeon and a dr who could provide a good second opinion.
I am lucky b/c I have an amazing support system. my mother and bf were at every single dr visit asking questions and it has just been so great to feel that, not to mention other loved ones who were there when i needed them. Always make sure you have a good support system, no matter who you are but especially if you have some sort of chronic anything, you can't do it alone. Even if you need to manufacture it for yourself. there are plenty of support groups that meet and if you don't want to you don't have to leave the comfort of your own house. CCFA has a great on-line community that i have found comfort in many times. Whatever you do make sure you have someone to talk to! especially with something like this its hard for people to understand b/c you look basically healthy to the rest of the world and its hard to talk about a lot of the things that we experience, but it is so important!
ANYWAY....so we talked to a 2nd and 3rd opinion. my goal was not to lose my organ, i wanted to be well but surgery just seemed so extreme to me. The other drs agreed, sort of. they thought that it was appropriate to be thinking about surgery but that there were still other options. They both thought i should try a boost of steriods and Imuran. It eased my mind but I was not looking forward to more steriods. then we saw the surgeon and that really put my mind at ease. 99% of my fears were calmed about the option of undergoing surgery.
Since about the 1st of this month i had been fluctuating between a normal temperature and anywhere between 103 and 105. I knew i would be seeing my regular gi dr in about a week so i figured i'll just wait and we'll talk to him then. But it just kept getting worse. I was taking percocet and dulodid just to get throught the day, not necesarily b/c of pain, though it was def there, but b/c those medications cause constipation and that was the only thing that kept me off the toilet literally every 20 minutes. Finally on the 11th my bf took me to the er b/c he was so nervous about my fever. I figured they'd get my fever down and I would go home and sleep it off. well that was 8 days ago and I haven't left the hospital yet. and tomorrow I will be recieving a colectomy. they will remove my entire colon and leave me with the J pouch and a temporary ileostomy bag. I am not too excited about the bag, BUT i am exstatic about the soon to be reality of being healthy again. My colon has literally been sucking the life out of me for the last year plus and i'm ready to get that life back!
Hospital stay #1
my boyfriend and I were preparing to set sail on a huge adventure and go teach English in S Korea with some of my friends. the jobs were basically ours minus a little bit of paperwork and a BIG note from my dr. The people in S Korea wanted to know that I was ok to work etc as long as i was in continued treatment. At the time I needed the note I had just had a colonoscopy b/c i had changed insurance and therfore drs.
After that colonoscopy the Dr put me on steroids and told me to expect to see positive results soon. Well, I didn't really know what soon meant and so I waited and waited and figured i just needed to keep waiting. I had never been on steriods before so i figured well the doc says i'll see the results so I'll just wait until i do. So back to this note, I call to get the note written and they said well how are your bms looking. Loose, bloody, very frequent (see i told you, graphic lol) and that basically grounded us from going anywhere, literally.
I had been feeling bad for months and really didn't even notice it. 10 pounds sort of just melted off of me and I had no idea until someone said something. I was growing some pretty dark circles under my eyes and was so pale it was almost scary. I was going to the bathroom about 6 times during the day and about that much at night.
One day I had enough, I couldn't eat without this very sharp pain in my belly and I got so scared that I asked my girlfriend to take me to the er. They ran some tests and gave me percocet and sent me home telling me to make sure to see my GI dr w/in the next few days. My mom was living in NY at the time and as soon as i told her I was in the ER she was on the next plane to Denver, thank god.
We got in to see my GI Dr the next day at at his suggestion checked myself into the hospital. We were told I would e there 2-3 days just to be on belly rest (no solid foods) basically. Well I ended up being there for 10 days instead. I was so malnurished that I needed TPN so i could get some weight on. I was so anemic that i needed 2 maybe even 3 i can't remember, units of blood and 2 units of iron. While I was there the drs decided i needed a new form of treatment so they decided to see how i would handle Remicade. i was finally well enough to start eating solid food, that was an amazing day! and fianlly let me go home. I went home still with the picc line and tpn with the thought i would continue tpn for a week more or so b/c i still needed the nutrition.
that night i was sleeping soundly just so glad to be home and cuddle w/my bf after months of having to sleep on a couch pillow and not move, movement meant movement in my bowels as well. I started to feel a tinglingin my legs and it would not go away. i took some percocets and tried to sleep but couldn't. I thought maybe my legs were just getting used to moving again after being stuck in a bed for so long so my bf and i got up and started walking around the apartment. I can only imagine the sight, there i am in my underwear marching around the apartment with the tpn backpack on my back, if it wasn't so awful it would have been pretty funny.
We woke up my mom who was staying with us and then we woke up everyone lol. We called my dr at 4 am and he called right back (one of the many proof that he really wanted to see me well). we finally found somethung that would let me sleep and thought that was it. I woke up and tried to eat but threw it up i was in so much pain, i couldn't even use the bathroom b/c i couldn't relax enough, and the pain in my knees kept getting worse. finally my bf and my moma piled me into the car and we went right back to the er. I was screaming so loud and my GI Dr came rushing into my room to check on me (example #2). turns out i was having an allergic reactin to the remicade. I was heartbroken b/c i thought well thats it we're out of options. Thankfully we weren't and they placed me on Humira. I was glad to know we weren't out of options but the problem with these drugs is they are so new and quite strong, its all the more important to educate yourself on things like possible side effects, things like that. I mean if you're going to have a reaction, you're gonna have one you can't plan on it but its just so important to know. thats the hard thing w/UC, there really aren't that many options and the ones that are, are very new so its all the more important to have the knowledge base.
So i finally went home "for good" feeling a million times better and proudly proclaiming (in i'm sure what was a very sexy move to my bf) "solid poop" when i had my first few solid bms. It was very exciting and for 2 months the Humira had me feeling like a normal healthy 25 years old. i was happy, but things quickly slipped back....
After that colonoscopy the Dr put me on steroids and told me to expect to see positive results soon. Well, I didn't really know what soon meant and so I waited and waited and figured i just needed to keep waiting. I had never been on steriods before so i figured well the doc says i'll see the results so I'll just wait until i do. So back to this note, I call to get the note written and they said well how are your bms looking. Loose, bloody, very frequent (see i told you, graphic lol) and that basically grounded us from going anywhere, literally.
I had been feeling bad for months and really didn't even notice it. 10 pounds sort of just melted off of me and I had no idea until someone said something. I was growing some pretty dark circles under my eyes and was so pale it was almost scary. I was going to the bathroom about 6 times during the day and about that much at night.
One day I had enough, I couldn't eat without this very sharp pain in my belly and I got so scared that I asked my girlfriend to take me to the er. They ran some tests and gave me percocet and sent me home telling me to make sure to see my GI dr w/in the next few days. My mom was living in NY at the time and as soon as i told her I was in the ER she was on the next plane to Denver, thank god.
We got in to see my GI Dr the next day at at his suggestion checked myself into the hospital. We were told I would e there 2-3 days just to be on belly rest (no solid foods) basically. Well I ended up being there for 10 days instead. I was so malnurished that I needed TPN so i could get some weight on. I was so anemic that i needed 2 maybe even 3 i can't remember, units of blood and 2 units of iron. While I was there the drs decided i needed a new form of treatment so they decided to see how i would handle Remicade. i was finally well enough to start eating solid food, that was an amazing day! and fianlly let me go home. I went home still with the picc line and tpn with the thought i would continue tpn for a week more or so b/c i still needed the nutrition.
that night i was sleeping soundly just so glad to be home and cuddle w/my bf after months of having to sleep on a couch pillow and not move, movement meant movement in my bowels as well. I started to feel a tinglingin my legs and it would not go away. i took some percocets and tried to sleep but couldn't. I thought maybe my legs were just getting used to moving again after being stuck in a bed for so long so my bf and i got up and started walking around the apartment. I can only imagine the sight, there i am in my underwear marching around the apartment with the tpn backpack on my back, if it wasn't so awful it would have been pretty funny.
We woke up my mom who was staying with us and then we woke up everyone lol. We called my dr at 4 am and he called right back (one of the many proof that he really wanted to see me well). we finally found somethung that would let me sleep and thought that was it. I woke up and tried to eat but threw it up i was in so much pain, i couldn't even use the bathroom b/c i couldn't relax enough, and the pain in my knees kept getting worse. finally my bf and my moma piled me into the car and we went right back to the er. I was screaming so loud and my GI Dr came rushing into my room to check on me (example #2). turns out i was having an allergic reactin to the remicade. I was heartbroken b/c i thought well thats it we're out of options. Thankfully we weren't and they placed me on Humira. I was glad to know we weren't out of options but the problem with these drugs is they are so new and quite strong, its all the more important to educate yourself on things like possible side effects, things like that. I mean if you're going to have a reaction, you're gonna have one you can't plan on it but its just so important to know. thats the hard thing w/UC, there really aren't that many options and the ones that are, are very new so its all the more important to have the knowledge base.
So i finally went home "for good" feeling a million times better and proudly proclaiming (in i'm sure what was a very sexy move to my bf) "solid poop" when i had my first few solid bms. It was very exciting and for 2 months the Humira had me feeling like a normal healthy 25 years old. i was happy, but things quickly slipped back....
Saturday, December 18, 2010
From the beginning
So i'm writing this blog b/c i feel like when i was told the words "surgery" there was nothing at least that i could find that was a first person account and that was from a woman's perspective. so i thought that a play by play of what has happened up to this point and what will happen over the next few months might be helpful to the next person who's dr tells them you have failed treatment and its time to consider surgery. I know that word really freaked me out, but its not that scary, hopefully this will help. so lets start from the beginning:
ps i have horrible grammer etc., it is what it is ;) and 2 I will probably be pretty graphic so if you don't feel like knowing what my bowel movememnts (bms) look like feel free to skip!
I was diagnosed w/Ulcerative Colitis at 21 about 4 years ago. I had no idea what was going on for the first few months and I have always been of the mindset that "I'm young and healthy, it'll take care of itself" (never a good way to think!) Finally after embarrassingly confessing my symptoms to my mom i started seeing a series of drs and undergoing blood and other tests to figure out what was going on down there we discovered i had UC. I don' know if i can adequately express how embarrassing and hard this whole diagnoses process was for me. I have always thought I was too cute for this disease. What i mean by that is i am super modest and easily embarrassed talking about "bathroom" issues. there are probably certain people in the world who would disagree with that but they are the far minority ;). and so here i am having to discuss my bodily functions, what they look like, how frequent etc w/complete strangers, it was really tough and i probably did myself a real disservice in the beginning b/c it was hard to get over, but thats the reality of it.
To make a 4 year long story short I had a great dr and went into remission basically right away w/the help of Asacol and mesalamine (sp) enemas. I was in remission and also probably denial. I was a senior in college and continued the lifestyle that went along w/that, at least for many people. I basically acted as though nothing was wrong and I just had to take these pesky pills. I continued living this way for about a year, year and a half and then i was hit with another flare up and thats pretty much the flare up to end all flare ups. It never really went away.
I had honestly a not so great drand I had no idea how to navigate the health care system. I thought the drs would have my best interests at heart and doeverything they could to get me healthy, i was pretty wrong, at least in this case. I felt that i was a burden to my dr and everytime I called they were like oh you again, so i stopped seeing him, completely. I still took my pills but i really felt this particular team of drs and nurses could care less if i got better or not. I once got a colonoscopy from him (which was like pulling teeth) and he said oh you'll be in remission soon, just wait, well that was 2 years ago and never happened!
I searched out my own "alternative" medical therapies, I was willing to try anything to get better and just be a normal twenty-something. I went to a curandero, I started going to a chiropractor who i actually suggest if you are in the Denver/Boulder area, she made me feel great for awhile my body had just had enough i think by the time I got to her. Until i finally found a dr who I feel actually gavea damn, and he proved it along w/his partners and his nurses. Anyway I say all that to say that there is NOTHING more important than being your own "health advocate" as my mom puts it. You have to really take an active role in your treatment and if you don't like your dr, get a new one!!!!!! and educate yourself, those are the 2 things i should have done much much earlier. the more yo know about your condition the better armed you are to overcome it!
ps i have horrible grammer etc., it is what it is ;) and 2 I will probably be pretty graphic so if you don't feel like knowing what my bowel movememnts (bms) look like feel free to skip!
I was diagnosed w/Ulcerative Colitis at 21 about 4 years ago. I had no idea what was going on for the first few months and I have always been of the mindset that "I'm young and healthy, it'll take care of itself" (never a good way to think!) Finally after embarrassingly confessing my symptoms to my mom i started seeing a series of drs and undergoing blood and other tests to figure out what was going on down there we discovered i had UC. I don' know if i can adequately express how embarrassing and hard this whole diagnoses process was for me. I have always thought I was too cute for this disease. What i mean by that is i am super modest and easily embarrassed talking about "bathroom" issues. there are probably certain people in the world who would disagree with that but they are the far minority ;). and so here i am having to discuss my bodily functions, what they look like, how frequent etc w/complete strangers, it was really tough and i probably did myself a real disservice in the beginning b/c it was hard to get over, but thats the reality of it.
To make a 4 year long story short I had a great dr and went into remission basically right away w/the help of Asacol and mesalamine (sp) enemas. I was in remission and also probably denial. I was a senior in college and continued the lifestyle that went along w/that, at least for many people. I basically acted as though nothing was wrong and I just had to take these pesky pills. I continued living this way for about a year, year and a half and then i was hit with another flare up and thats pretty much the flare up to end all flare ups. It never really went away.
I had honestly a not so great drand I had no idea how to navigate the health care system. I thought the drs would have my best interests at heart and doeverything they could to get me healthy, i was pretty wrong, at least in this case. I felt that i was a burden to my dr and everytime I called they were like oh you again, so i stopped seeing him, completely. I still took my pills but i really felt this particular team of drs and nurses could care less if i got better or not. I once got a colonoscopy from him (which was like pulling teeth) and he said oh you'll be in remission soon, just wait, well that was 2 years ago and never happened!
I searched out my own "alternative" medical therapies, I was willing to try anything to get better and just be a normal twenty-something. I went to a curandero, I started going to a chiropractor who i actually suggest if you are in the Denver/Boulder area, she made me feel great for awhile my body had just had enough i think by the time I got to her. Until i finally found a dr who I feel actually gavea damn, and he proved it along w/his partners and his nurses. Anyway I say all that to say that there is NOTHING more important than being your own "health advocate" as my mom puts it. You have to really take an active role in your treatment and if you don't like your dr, get a new one!!!!!! and educate yourself, those are the 2 things i should have done much much earlier. the more yo know about your condition the better armed you are to overcome it!
Subscribe to:
Posts (Atom)