I've been on Remicade for just about 2 years, my weight is up to where I started 20+ years ago, 120lbs wahoooo . Over the last 20+ years I've done just about everything a crohns pt can , it started w an obstruction in my ileum, I was hospitalized for 6 weeks, that was my shortest stay. It then turned into circumferential ulcerations, they placed a feeding tube up my nose. Then I developed it in my esophagus, 12 years later I still have to go in and swallow a scope w a ballooon attached on a yearly basis now....it finally lead to surgery... It seemed to be at it's worst when I was in my 20's, my Aunt called them the "traumatic 20's". so much happened. The Dr's didn't really know what to do but steroid treatments or surgery as a last resort. I'm really happy we've come so far in the last 10 years w biologics or I would have had my second surgery 2 years ago. I'm also very lucky to live in Canada. They get you what you need and my Dr was on it, two weeks after my colonoscopy I was approved for the remicade. Another huge gaping ulceration in my ileum, it ready to perdorate. It was all I could do to get there as 5 days after my colonoscopy I flipped my car and have two compression fractures and a ruptured disc, that was fun!! Darn near killed myself on black ice, pitched the car end over end off a culvert, you can imagine my dismay as I was trying to avoid being hospitalized and there I was on the Neuro Surgery unit and my guts were ready to tear apart. Neuro surgeons know about the brain, they didn't know to much about crohns so I just wouldn't eat anything but yogurt and drink Ensure until I got out of there. I made it to my remicade appointment and it was like instant relief of everything!!!! Back pain decreased, crohns seemed to get better with in a 24 hour period, to bad I couldn't hold myself up on the toilet, I'm lucky my significant other could take time to be with me, he was literally my back bone. I also suffered a stroke at the age of 5, why we don't know? It happened and I lost use of my right hand, arm and foot....the leg is like a peg lol. My foot doesn't move in my shoe except for spasms but I'm getting that taken care of w a round of botox to the right side of my body. I've had distonic movements since I was a child but now they've turned into contractures and have torn my rotator cuff so a parkinsons drug, botox and another injection is coming this Tuesday, YAY!!!!
So that's my medical history, keeping it short. I still have crohns, it's still there but it's being held at bey with the Remicade. So two years ago I felt instant relief I find it's not so instantaneous anymore. It turns out I'm anemic, I need infusions of iron so have been feeling just sick and short of breath and tired all the time. My GI asked if my periods were getting heavy and yes they are. Since Remicade is an anti-inflamatory is this why my periods are heavier? Could this be why I'm anemic? Yes I've been to gyno just last week, no worries about that. Everything checked out fine and they're sending me to ultrasound just to make sure there's nothing in there.
So since the summer, I had an infection which took an awful lot of antibiotics to rid myself of, it was in a saliva duct which made eating all the worse. I had the gland removed November of last year but the ENT couldn't get the stone out of my mouth, he expected it to just disolve and go away, well maybe in a normal body it would have but nono not mine . Instead I had this stone stuck uder my tongue and was scheduled for surgical removal, I didn't make it to surgery. They put me on one antibiotic that didn't work so I wound up in emergency and got a round of another antibiotic via iv to boost start me, w in 20 mins I was spitting puss but the pressure went down so I told him I could hold on as the surgery which was booked 7 days later. On day 4 I felt something hard protruding from underneath my tongue, I had been hard on the popsicles and it moved. It looked like a tooth coming through, so I closed my mouth and eyes and pressed real hard down on my tongue and didn't the rock fly and hit the the back of my teeth like a bullet . It was instant relief and I still have the frigger in a pill bottle, I'll never let that go. It tortured me for years!!!
Since the stone came flying out I had my Remicade infusion w in a week of stopping the antibiotics. I came home and didn't move for a week. Had migraines, vomitting just poison coming out of me. That happened in June, it's been six months. I just had my 3rd treatment of remicade since the nasty infection and I still feel exhausted, nauseous, crampy and joint pain. Not as bad as in the summer or Sept so I assume I'm on the mend but when will I jump off the remicade chair and back into action the next day?? Yes I work, I enjoy distracting myself from all of the above. I'm mainly working for the hospitals now, I used to run a home rental agency for 10 years but after that accident I find it harder driving and climbing through houses so I'm giving it up for the hospitals. I've applied for a couple jobs now as I'm just a casual in a great rural hospital in Musquodoboit Nova Scotia. So I guess I'm asking if my crohns is still on the fritz due to anemia and all those antibiotics in the summer months? I'm tired of being tired and sick feeling. Any words of wisdom would be greatly appreciated...this was written yesterday, I feel better now, almost 100%! Just intime for Christmas and botox on the right side :). Merry Christmas and I hope to hear from those of you that havce the same struggles. I'll never give up, I'm a severe case of "drug resistant" Crohns Disease. The remicade just so happened to do the trick just in time, I remember struggling before but it wasn't until I was filling the toilet w blood, the ulcer was right where they resected me 11 years ago and I was bleeding, I was wide awake sedated but eyes wide open as I wanted to see what I was up against, I saw it. It was a monster, I'm so thankful for my GI :)