Anthony, I am starting remicade this week. My back is against the wall, I am not responding very well to steroids. Just how sick are you? What is your typical day like? When you wake up.. are you in pain? what are you pain levels? do you run fevers? Do you feel 'sick'.. or do you have bloody BM's that maybe hurt while your about
to move your bowels.. but otherwise are fine? you've been flaring for a while now.. does it wax and wane? What have you tried during your flares and for hoow long have you tried them? What foods are you eating? are you eating them consistently and/or at consistent times of the day? How many different times have you been on steroids since you first started colitis way back when? Are you sure its only left sided colitis?
I am sorry if I am repeating some of these questions My mind is racing right now I am and have been on a high doseage of steroids now for the past few weeks. I am just gettin over a 17 day hospital stay(, ill give you my history in a moment and help you to understand how I came to be where I am).
Anyway, heres a run down of my history, and why I am choosing remicade.
My first flare started when I was 24 years old in winter(29 now.. 30 on aug 2). That previous summer, I had a near fatal car accident that was my fault and I almost killed 3 people. While I was goin through the court case that winter, I went through unbelievable stress and I firmly believe thats what started the merry go round. I had never had any other GI problems before that, and my first symptoms were bloody diareha, goin to the bathroom many times a day including being woken up at night by it. I didn't go to the doctor for some stupid reason(thought it was hemroids.. i was very ignorant to health back then) and luckily it seemed to diminish in spring(seems my colitis was cyclical resolving around the seasons until this spring). The colitis started going away in march, but at that point I had made an appt and eventually altho my symptoms were almost gone.. I had a colonoscopy which my GI dr described as 'hamburger meat'. lol. I was diagnosed with left sided UC...altho years later when I educated myself, i got a result of the pathology and saw that my entire colon including terminal iliem was involved. That dr is no longer my dr. My symptoms stopped, and me being a knucklehead, decided i was better and it was just the stress of the accident and I wans't taking 9 colazol(horse pills) per day when I was feeling perfectly fine.
Fast forward to that winter... my brother gets sick with a stomach flu and passes it to me. I didn't realize that my colitis was flaring until it started waking me up at night and i was moving my bowels 45 times per day, had a 103 fever, and felt like i was goin to die. my gi dr gave me prednisone the first time and that knocked it back under contols and within 2 months i was symtpm free as march rolled around. This time I stayed on the colozol. Didn't save me from the next fall. I slowly started rampin up on colits symptoms as september rolled around and we started the pred pretty quickly. I was passin about
20 movements per day tho I hadn't yet started feeling flu like nor running a fever. Pred lowered the symptoms..but once I got to 10 mg.. the symptoms came back. i was introduced to 6 mp. took me over a year to get off the low dosages of steroids but after about
2 months the 6mp had stopped the flare and eventaully once I got off the pred a year later, my health slowly returned and i did well on 6 mp for about
2 years. But, I figured that since i don't get flares in the spring and summer, I could come off it during those months. Well I reinstated too late and sure enough I started another flare in september that hit me so hard and so fast, it landed me in the hospital. this time i didnt' start with many movements leading up to further sickness.. i started being sick first wtih fever and fatigue and gi pain.. but had normal amount of movements. The day I saw blood, that day i passed out and ended up in the hospital for 7 days. reinstated pred and 6 mp.. only this time even tho my colitis flare was knocked down by the 6mp.. i stayed sick. I was running low grade fevers ever day.. and even tho I was on pred for a few months.. i had SEVERE debilitating joint pain. turns out after investigation, i had ragin lyme disease episode as well.. and thats a whole other story which I can elaborate if anyone wants to know more(and further more, it turns out the root of THAT was an underlying INCREDIBLY HIGH MERCURY TOXICITY!!). And I am almost positive this whole mess is all tied togehter.
Anyway back to the colitis portion. I stopped 6mp 2 springs later(I think it was 2 years ago) and my fevers abated until last september. Through a miracle though, I did not get a flare last september for the first time since it started leading me to believe my mercury treatment had finally licked the colitis. Eventually, my health improved so much this past december that I felt normal! no lyme/mercury, or colitis!! my mercury levels were dropping.. and i felt like i had my life back!!
So i finally decide to get a new job earning me a 30 grand per year pay raise that I couldn't get while I struggled to keep my job while I was sick.. well the stress from the new job gave me a flare starting about
2 months ago IN SPRING MIND YOU! I never had it in spring so i was shocked. i wasnt sure it was colits because i just started with fevers(low grade evening running from 99.0-99.8), fatigue(increasing week by week at new job), and some stomach pain. I didn't have any bloody BM's until 5 weeks ago. Basically 1 day... my stomach just started hurtin so bad I never felt pain like that before(and believe me I have felt some pain in my life). The pain lasted a week straight only broken up by anti spasmatics and opiates. I was reinstated on rectal and oral meds. I was afraid to take pred because i didn't want to flare the lyme(lowered immune).
1 week after the first pain.. i was admitted too the hospital due to a 102(closin in on 103) fever that started 2 days earlier, and excrutiating pain so bad I was screaming almost non stop even when i had no bm's and they had to load me up on enough dilauded( super strong IV pain killer) to knock out an entire herd of elephants. I was admitted for 17 days. I've lost 43 lbs in 5 weeks(put a few back on now cuz of pred but really not much.. just looks like more). a cat scan revealed extensive pancolitis and my GI dr said it was the worst colitis he's seen all year after my colonoscopy. I had a non stop 103 fever for 6 days. tylonal wouldn't knock it down. extemely high doses of pred wouldn't knock it down. and let me tell you, i thought i was going to DIE. When I had hte lyme concurrently with mercury and colits and that ordeal lasted for 3 years... I thought that was bad.. but this was indescribable. the pain, sick, fever, just wow I am amazed that I am breathing air again that tastes like air.. and when i got out of the hospital I cried i was happy to be out(and predded out of my skull :) ). I lost weight so fast that my skin was sagging and it looked like paper bag was covering my hands and it was wrinkly and just looked like i aged so much. lookin in the mirror was shocking, i couldnt belive how i looked from bein slightly chubby to just a skiny man. it was shocking.
now where I am at today. I've been out of the hosptail exactly 2 weeks. I came out on 50 mg of oral pred. We tried to reinstate me on 6 mp.. but I took it 2 days and my fevers returned.. I stopped it and my fevers stopped.. 6 mp is ruled out. I tried to lower my pred 5 mg every 5 days. I got to 35 mg and flare came back. so I am back at 45 mg. I take colozal and rowasa rectals religiously. My bms aren't bloody now, frequency went from about
20 times a day down to about
3-7. my fevers are gone.. my stomach pain is immproved, havnet needed opiates since hospital nor spasmatic in about
6 dyas. however, if i make a mistake food wise, or when i went down to 35 mg of pred.. the flare is right there waiting to come back.. in the past when i was on pred, i could do anything until i got to 10-15 mg of pred which meant eatin food i wanted(tho i wouldnt). This is a dangerous flare for me.. if it goes more then a few days into the flare I will without question be right back into the hospital.
My descision for remicade has not come lightly. I understand there can be a plethora of side effects, cancer, nervous system stuff, yadda yadda. Based on my research though, and i read the clinical trials and all that stuff, seems most of the cancer happens when you combine the 6mp's and that class of drug with remicade and that class of drugs. and lets be honest... pred itself is a very terrible drug and can cause truly horrific long term effects and each time we go on pred.. we run the risk of never being able to come off if our adrenals decide not to kick in. I myself was very close to that but i was able to avoid that through research, planning, and just deeply understanding the nature of my body. 6 mp and Azathioprine also have a fairly high potentially nasty side effect profile and there are also people on these forums who refuse to go on the ASA medications.
For me it came down to... how sick am I currently, how sick have I been in the past, and how bad based on my extensive history... will my colitis and sickness be if I don't take the next step? as you can see from my history.. when I get a flare, i get VERY sick. it is very important to understand in your life what sick has done to change it from when you were a happy normal lucky go person(and when the last time it was you felt that.. and how far you are willing to go to get that back). I am also time constrained.. i am missing work, losing money, losing my life. This flare is so seveere that I am periously close to losing my colon and theres no question about
it. I simply do not have time to wait for things to work and I am so sick that the next flare and I may be having emergency surgery anyway.
Now to tie it in iwth my mercury toxicity issue.. Once i found out that I had mercury issuess, i realized that this was likely the root cause of my colitis. since hten its been a race to see if i can get hte mercury out before i lose my colon or need remicade. my hope now is that the remicade will put me into remission long enough to get the rest of the mercury and at that point hope that the mercury was the root cause and come off remi andd see. will be a big descision but thats for then.
Anyway I am sorry for the long post. I am so screwed up on pred right now my head is racing and im not even sure if this makes any sense(i normally am a pretty good writer!!). its 5:14 am, I've had no sleep(thanks pred). But I wanted to go into my history and that would give you an idea how personal this ordeal really has been, some of the pain i've suffered, and the events that lead me to this point. Everyone will have a different story. The fear i have from remicade is less than the fear of what I just suffered and also of the the fear that if i don't act quick, whats coming. I believe though that if you feel you have more time than I do and if you are not feeling terribly sick, you should(depending on what you've tried already), try some other options(ldn maybe), but maybe not get too radical with some of the whacky alternative stuff that can be out there. Also maybe investigate metal toxicity, or some other poisons or intolerances that may truly be the 'cause' of your colitis becuase you never know. i
if you wnat to chat more off line by all means toss me a message, email me(
[email protected]) and hopefully ill be a b it more legible.
Good luck with your choice!
Vin
Post Edited (Vin) : 7/26/2011 4:29:58 AM (GMT-6)