so occasionally ill check the stats on this blog, and it will tell me the most recent terms used to search for my site. today i came across “colitis fml”. i wish i knew who searched using that phrase because i can totally empathize with them. both currently and in the past. sometimes i feel like saying fml because of all that i have been through. i have good days and i have bad days. sure, the good days are starting to outnumber the bad days, but i still wish i could have been born with a “normal” colon and never had to go through the surgeries and pills and doctors and diet changes. things would have been much easier. as i type this, im eating marshmallows in hopes of slowing down my system enough to get to sleep. im still going to the bathroom quite a bit, and i get up at least 2-3 times during the night. i go through about a roll and a half of toilet paper a day. my parents are having trouble keeping all of the bathrooms stocked because im going so much. so for now, all i have to say is colitis fml.
sick… April 2, 2010
so on monday, my brother came home from school sick with the stomach flu. lo and behold, i came down with it the day after. wednesday, i started having sharp pains in my side and they were getting unbearable, so my mom took me to the emergency room. well they misunderstood, and thought i had a broken or bruised rib, so 3 hours and a few xrays after arriving, they finally move me to the right section of the er and give me something for the pain. they did another ct scan, and said that everything looked okay, and there were still some lymph nodes in my stomach that were healing, and that was probably the source of the pain. soooo appx 8 hours later, i was back home and feeling better. they gave me a prescription for ultram for the pain, but it doesnt seem to be strong enough, because last night the pains were back. i decided to take some bentyl (which they also gave me a prescription for) and massaged the area, and it seemed to help. i just dont know if its flu related or surgery related. whatever it is, im hoping it resolves itself soon. the weather has been amazing lately and i havent been able to enjoy it 
feeling really good for a change! March 29, 2010
im happy to report that i am no longer addicted to pain meds!!! the cocktail they gave me at the last er visit really helped a lot. i barely felt the withdrawal symptoms, which leads me to wonder why one of my previous doctors didnt just go that route to begin with. im still taking at least one bath daily, but now that my incision is healing, im allowed to take a real bath (with more than a few inches of water!). things are really improving and im starting to see the light at the end of the tunnel. this has been a long journey for me, and i am excited to start to feel normal again. i went to the park the other day and didnt have to worry about staying close to the bathrooms! thats some major improvement from a year ago!
meds wise, im only taking imodium as needed (maybe one a day) and the occasional tylenol. it feels great not to be dependent on pills!
i was supposed to have a follow-up appt with my surgeon this morning, but i accidentally overslept (oops!). not like it was a major appointment or anything, he was basically going to look at my incision, tell me it looks good (like he always does) and bill me $50. definitely not a crucial appointment.
now that im feeling better, the next thing on my agenda is finding a job. ick. ill let you all know how that goes… 
okie dokie… time for an update March 27, 2010
so originally i had an appointment scheduled for this past thursday for the pain clinic. well by tuesday evening, i ran out of percocet. there was no way i could go another day with withdrawals, so i begged my dad to take me to the emergency room at 5am (since i couldnt sleep) after what seemed like forever, the dr came in and told me she had reviewed my visit history, and i had an awful lot of visits that resulted in a percocet prescription (she basically thought i was med seeking) i told her i just needed something to make me feel better, because i had a pain management appt in a few days. she seemed pretty skeptical that they would be able to help me wean off of the meds, and told me she could give me a few things to ease the symptoms so she loaded me up with adavan, zolfram, and torodol, and gave me a few prescriptions for the next couple of days she basically knocked me out cold, and i remember vaguely running into a few walls here and there (and apparently i said a few humorous things too) but i dont recall much until waking up at 10pm that evening.
so im currently taking tramadol 50mg for pain every 4 hours as needed, lorazepam 2mg for anxiety every 4 hours as needed, and promethazine 25mg for nausea every 6 hours as needed. sofar, i havent really needed the promethazine much, just basically the other two. im barely feeling any withdrawal symptoms which is spectacular. im finally starting to feel “normal” again, and not dependent on a drug. suboxone may be beneficial to some, but for people like me, i think just controlling the withdrawal symptoms are easiest. the only problem is the loraz knocks me out, so i of course slept right through my pain management appointment. the er doc didnt seem too hopeful that they could help me anyway, so as long as this course of treatment is working for me, im fine with it i have another follow-up this monday with my surgeon, and i wanted to ask him about the healing of one of my incisions. the vertical one seems to be doing just fine, but the horizontal one where my stoma was is still oozing and crater-ish.. not sure how else to describe it. ill see if i can get a picture up later for those of you who can stomach it
not as easy as i had thought… March 18, 2010
so post-takedown surgery is not a walk in the park. i was feeling so well after surgery (when i was still in the hospital) that i didnt think i would have such a difficult time. ive been following a few other blogs, and they all say that the few weeks after surgery are hell. i didnt know exactly what they meant until now.
i feel like i have colitis again. i know this is temporary until my body figures out my new system, but its an extremely slow process that seems never ending. not only do i feel like i have colitis, but i feel like i did just before i had my colon removed. so, essentially the worst colitis ever. the only difference is i just have to wait it out, and no medicine will help the process. i can only take pain meds and imodium and hope for quick recovery. as of a couple days ago, i was going to the bathroom close to 30 times a day, but thankfully today and yesterday that seems to be cut in about half. i took a total of 5 baths yesterday, since that seems to be the only relief.
my doctor took my staples out on monday, and that did seem to lessen the pain some, but only from the incision site. he told me everything was looking great, so he wasnt sure why i was in so much pain and referred me to a pain management clinic. the clinic requires referrals, so it took a few days to have them call me. by the time i got the message, they were closed so i had to wait till today to call.
i was also hoping i could wean myself off of the percocet, but i ran out last night and withdrawals were coming back with a vengeance. i was able to get ahold of the pain clinic and made an appt for next week, and my dr gave me a refill to tide me over until then.
so until then, im taking my pain meds and hoping my body clues in soon… thanks for all of the well wishes everyone!
pain! March 15, 2010
so yesterday i ended up back in the emergency room because i was having pain, and lots of it. i couldnt sleep because of it, and the only thing that made me feel better temporarily was sitting in a shallow bath. since you cant sleep in a bathtub, i was very uncomfortable. it started the night i was released from the hospital…
that night i didnt eat dinner and went straight to bed. woke up a bunch of times, and tried to sleep as best i could. the solid food was starting to wreak havoc on my body, and without the iv pain meds, i didnt want to eat anything. i tried to stay hydrated with juice, jello, and chicken broth (im starting to really love chicken broth btw) but i was feeling weaker and weaker, and the pain meds werent helping much. i was going to the bathroom at least once an hour, even though i had nothing in me. imodium wasnt doing anything at all either. i attempted some toast friday night, and some scrambled eggs saturday, but i wasnt feeling any better. i had my mom call my surgeon on sat. and he told me to try the baths. after a day of that and minimal relief, we called back and he said if i couldnt wait until my follow up appointment today that i could just go to the er. there was no way id be able to make it one more day, plus i was starting to feel dehydrated and feverish so i decided to go to the hospital.
after a half a day and a ct scan later, they determined that everything looked fine, shot me up with some drugs, and sent me home. i was feeling great last night so i begged my mom for some macaroni and cheese and chicken from boston market (my first real food in a while) and i knew as soon as i finished eating that it would be a bad choice. spent most of last night in the bathroom again, getting an hour or two of sleep here and there… and i have my follow up appt today with my dr. im hoping he can recommend something else to help with the healing process because i dont know how much more of this i can handle. i used to think i had a pretty high pain tolerance, but not anymore… im almost wishing the ostomy back… not a good sign. but ive heard that this is typical after take-down surgery and things get better, so im hoping that they get better sooner than later. ive already been to the bathroom 2x since i started this post, and im thinking of running another hot bath. ughhhhh anyone have a cure for me???
//edit// take a look at the new widget on the right hand side of the screen —-> you can help me help kids in the hospital cope with their illnesses by clicking on the icon and giving literally 2 seconds of your time… it is completely free and you can do as many of the “activities” as you wish to donate as much as you wish. look at the totals sofar!!!
four days post-op! March 9, 2010
ok so i know, i know, ive been slacking… a lot… but things have been so good lately that i havent felt like leaving reality for a few minutes to write…
okay so lets start from my last update…
surgery was friday, it was pretty uneventful. it wasnt until 2:30pm, so of course by the time rolled around, i felt like i was going to pass out from not eating anything. i get to the pre-op room, and theres a guy in the curtain next to me playing the harmonica. odd, but whatever you need to do before surgery to relax i suppose… so a few hours later, i wake up in recovery to the sound of harmonica. well under typical circumstances i can tolerate it, but not when im waking up from surgery in intense pain. so i pretty much yell at the guy that he needs to stop and he does.
so my pain level is about a9, and the nurses tell me that theres no reason that it should be so high because they had the meds flowing through me. fast forward to about two hours later, and i cant talk and im having trouble breathing (since breathing requires moving my stomach, which was just sliced open.) im trying to page the nurses, with no response, and trying to call my mom who ran home really quick to get my brother situated. a nurse finally responds, and somehow i utter out that im in so much pain i cant breathe. fast forward about an hour of suffering, and they finally realize that the tiny tiny hose hooked up to the pca pump is kinked, and i havent been getting any pain meds thusfar. so they give me a huge shot of it, but i dont feel any difference, and im starting to hyperventilate. my poor mom walks in on this situation and has no clue whats going on. so they decide to give me some anxiety meds to calm me down, and i essentially pass out. my parents said that the whole time i was asleep i was pretty much crying and whimpering in pain. i slept for about 5 hours, and when i woke up, the meds had sorta kicked in and i was feeling slightly better, but not a whole lot. i remember begging them to give me something stronger, but they wouldnt due to my drug history. so the next few days, i deal with the intense pain while only receiving fentanyl (i know what youre thinking, fentanyl is plenty strong… well not when im used to dilaudid essentially rendering me pain free…).
yesterday, day three post op, i was feeling great. they took me off of the pca, and off of my iv completely. they left the needle in me just in case i needed an iv mediation, but im no longer tethered to a pole! and they tell me that the dr has prescribed percocet every 6 hours, and dilaudid for breakthrough pain. seriously?! they wont give me dilaudid when i actually need it, but when im recovering and the most vulnerable to relapse they prescribe it. way to go.
so in case youre wondering, i ended up letting the pain et so bad before i took pain meds that the only thing i could do was take dilaudid. so i guess im back in the vicious cycle.
so thats pretty much where im at right now. im still in the hospital, and not sure when they are letting me out, but im kind of scared to leave too early (i want to make sure everything is excellent before they discharge me so i dont have a repeat of last time)…
i feel like im forgetting something, so ill be back to update if i remember anything. and ill let ya know if the dr says anything new… oh and ive recently been spending some time with someone… that i really enjoy spending time with… enough on that for now though 
surgery is tomorrow! March 4, 2010
im sooooooooo excited! last night i had my “farewell ostomy” dinner with my mom and brother, and ran into some old family friends. it was nice to get out and catch up. ive been trying to catch up on things i need to do before i go to the hospital tomorrow, and i feel like i dont have enough time. oh well, its not like i have to have everything done by tomorrow
so surgery is at 2:30 and i have to be there at 12:30. ive been on nothing but clear liquids since midnight last night (about 13 hours) and im already starving. another 24 hours of this to go! i am so pumped for this, its incredible. im finally going to be able to function like a *normal* human being (i say *normal*, because whos normal anyway?)!!!!
so ive been trying to stretch my last few ostomy bags for the past week, and im on my very last one. its cutting it seriously close. i really should have a new one on at this point. i went to the pharmacy to see if they had any samples or would sell me just one, and it was a no go. words of advice: if you ever find yourself in this situation, contact the supply company a couple weeks in advance if youre gonna run short.
anyway, two weeks ago my psychiatrist decided he didnt want to deal with my insurance issues anymore and cut me off. so i ran out of suboxone about a week and a half ago. the withdrawals got so bad i had to go to the er. so there, they decided that there was no sense in me suffering through the withdrawals if i was just going to be put back on pain meds in a week. so they gave me some percocet to take in the meantime. well they didnt give me quite enough, so i ran out yesterday. with 2 days to go. i called my surgeon to see if he could just get me a couple pills and since he was out of the office, the nurse told me to just take some motrin. SERIOUSLY?! yes, motrin takes care of withdrawal symptoms. geez. (note the heavy sarcasm). so i ended up going in to the office today and they gave me pills. yay! so now im not withdrawing and im feeling sooo much better. it was getting hard to get things done when i couldnt focus or function.
soooo thats my current update. not sure when im going to be able to write next, so text me or come visit! ill be in the same hospital as last time. ill have my phone on the whole time, but once again i ask that you dont call me. just a personal preference.
and the family friend we ran into last night reminded me that im having my surgery on a friday during lent, and i should offer it up. so here is my formal offering. please keep me in your prayers and thoughts that i will have a speedy and uneventful recovery. ive been through plenty in the past 6 months, and i just want this operation to go smoothly. even if youre not catholic, send me some positive vibes
lots to update! February 22, 2010
ok so i admit ive been slacking, but this past week or so has been sort of busy for me (for being unemployed and out of school, “busy” means having at least one thing to do each day lol) and i havent really had the time or energy to write. im having some withdrawal symptoms (more on that later), which means anxiety like crazy, so i figured i might use some of my energy here.
ok so first of all, i had my flex sig, and everything went as expected. i felt like i was there forever, but in reality it was only a few hours. that morning, i had to give myself an enema (graphic, sorry) to clean myself out at 4am, and since i had been having trouble sleeping lately, i ended up not even going to bed the night before. sooo extremely tired and anxious, i arrived a little after 7am (the roads werent that great) and expected them to be busy. i was the only one there (when i went for my previous 4 tests there were at least 4 other patients in) which was convenient. they had most of my info from my previous stay(s) there, so registration was quick and painless. i ended up having to wait like 20 minutes for the doctor to arrive (like i said, the roads were bad and he got stuck on the expressway due to an accident) so i chatted with the nurses about the job market. apparently they arent hiring any counselors, but i already knew that.
the doc finally showed up and decided to give me fentanyl and versed (for pain and sedation) and i was worried they may counteract with the suboxone. they gave me a note for my psychiatrist in case the fentanyl showed up on the drug test i had to do this week, and told me they would give me a very small dose. apparently a small dose is still enough to make you loopy, because i remember saying some incoherent things afterwards. it was actually pretty cool though, because i was awake for most of the procedure but didnt feel a thing. i got to watch what was happening on the tv screen in front of me. they took a couple biopsies but said that overall everything looked okay. there was a little inflammation but that could have been due to the enema from earlier.
so after the test, i took my chauffeur out to breakfast (molly’s diner, yum!) and slept the rest of the day away. i had to call the office to schedule a follow up appointment, and since it was late friday when i woke up, i had to wait until tuesday (they were closed monday for presidents day) to call. i ended up being able to schedule for that coming friday.
in the meantime, i had a suboxone group that tuesday in which i had to sit in a room for 2 hours while everyone talked about their using habits. i felt more out of place than when i did at rehab. it was super awkward, but i endured it. we all had to have drug tests too which sort of made me feel like a criminal. so after the 2 hour meeting, i had to wait an additional half hour to even see the doctor to get my prescription. suboxone is a controlled substance, so you cant just have the pharmacy call to get a refill, and only certain doctors have a license to prescribe it. i go in to his office, and he essentially contradicts what he said at my last appointment (which was that he would let me do self pay and cut me a rate because of my insurance situation) and that i can just go off the suboxone cold turkey and ill be fine. easier said than done. i knew i was about to cry right there in his office so i was quiet and let him tell me to just suck it up. he wished me good luck and i bolted out of there. he was calling after me to get me to sign a paper that said he was releasing me from treatment, but i wouldnt have any of that so i left. i ended up breaking down in my car. withdrawals are not fun, and i knew that i would have a hell of a time cutting myself off. even though i dont have any pain meds left, i knew i would have a hard time. i had enough pills for three more days, so i stretched them as much as i could. last night i started having withdrawals, and today they are not pretty. so im basically just waiting until my next surgery and hoping i dont have to go back to rehab afterwards.
ok so friday comes and i go to my follow up appointment (which was another $50 that i dont have) and the doctor told me the pros and cons of each surgical option. i decided to go for the direct surgery, which means leaving the rectum in place, forgoing the jpouch, and reconnecting my small intestine. the benefits to that option to me outweighed the benefits to the other. there will still be a chance for rectal cancer (especially given my family history) so i need to be regularly checked for that, and there is a chance that the disease could still flare up (but that could be controlled by meds like before). so technically i still have ulcerative colitis, but without a colon. my infertility rates dont increase as much as they would with the other surgeries, and id have the same control and frequency with the jpouch. plus, i can always opt for the jpouch down the road, but if i went with that surgery first, i could never go back. if the jpouch didnt work, i could be stuck with a permanent ileostomy. after the surgery, ill be in the hospital about a week, so once again, visitors are always welcome!
i wanted to schedule that day, but the girl who does it wasnt in, so they told me to call back on monday. im currently waiting for her to call me back and let me know when its scheduled for. im so excited. i cant wait to finally be rid of this ostomy! its not terrible, but im so over it.
so thats where im at right now… ill update later once i find out when im going under the knife again!
//edit// my surgery is scheduled for march 5, and ill be going in for testing this wednesday! super excited! it will be exactly 6 months and one day since my first surgery!
february appointment update February 7, 2010
i had another follow-up appt on friday, and first of all, was informed that as of december my “free” follow-ups had expired… so i now owe $100… great. anyway, i have an appt for a flex sig on friday morning, and depending on the results ill know if i need one or two more surgeries, and exactly how the doc wants to proceed… so not much to update on until then, ive got a lot of questions for him either way!
today is super bowl sunday, and i really could care less. im not feeling so hot today so i think im just gonna have a low key day. maybe clean my room?
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