I am new to Crohns, actually found out 2 years ago. I'm 43. Even though it may have been going for 10-15 years. I read one thing, I had my appendix out when I was in my early 20s that can make crohns take longer to start. Regardless, I didn't have any symptoms till I had back surgery. I had back problems for years and my doctor was going to fuse L5-S1. We'll he did it. everything was going great, I was back at work. then this happened. It was 3 months after the surgery, I participated in a fire drill, I went down 21 stories. My doctor had that on the list, but it one of those things you miss. Anyway after that to this day. I have had tingling down my left leg gets really bad in my left foot. Standing in one place for a long time kills me. Surgery 1
MRIs and cat scans nothing, except at the same time period, suddenly I start having bathroom issues lots of the Big D. I then had a bad problem, I went to bed one night and woke up, just didn't feel right, could not go to the bathroom. But my stomach felt full, so I decided, I will throw up and get it out. Wrong move, I couldn't stop, I kept throwing up like crazy, ended up at the hospital found out about Zofran, which is a miracle drug, but I had a blocked intestine. Also I learned do not trust nurses, I had to drink all this crap for a cat scan, I get the cat scan over with, sitting in the waiting room. I feel like crap again, I throw it up, I figured their done. We'll this nurse, thought, I was starting it up again, her and couple others decide to NG tube me, that is painful as can be. When they left the room. I took it out, lol, ticked them off, but I made a deal if I started getting sick again, they could do it. But they literally ambushed me, and I thought it was unfair. I had to drink a bunch of stuff then hold it down, when I was already throwing up. It was stupid for them to do it. I find out and in the hospital for 2 days eventually everything started going.
I went to this gastro doctor that I ended up firing, mainly because he left me hanging in pain for 6 months. He did a colonoscopy and, i'm not a doctor, I was like, it doesn't look right. But he made me wait till he went to a doctors conference, came back didn't know. But they were about positive that my gallbladder was having problems. So they removed it. Later on I talked to the surgeon and sent him the colonoscopy and he said, if I would have known this, I wouldn't have done the surgery. Surgery 2
By this point I was done with this Gastro doctor, still Bad D, and he wants to do another colonoscopy, that's when I fired him. I talked to some friends and found this colorectal surgeon, that's famous in Atlanta. He took one look at my colonoscopy and MRI and was like you got Crohns and bad. There are no meds that will help you, you have to have surgery. THe thing is he thought, I already knew and I was like no, this is the first time I have found out. I asked him like my past gastro doctor, do you need to do a colonoscopy to make sure? He was like do you want to go thru another? I was like Hell no. And he was like me either if I can help it, Ive been doing this for 20 years, you got Crohns.
So I had the surgery and he removed some of my ileum and some of my large intestine. He was getting married and it was a hellish surgery to me, After 5 days in the hospital they said I could go home. They said your going to get drainage, we'll after 3 days, I was still in massive pain, eating very little. My sister is a nurse anesthetist and she took a look at my drainage and she was like that's not drainage that's poo. We'll back to the hospital, my doctor got back. For 13 days I was in the hospital and they got all the crap out, and everything sealed. I thought I was going to die from going septic. Surgery 3
Also in those 13 days, everything was thru the tube.
So I finally got released then my wound looked good then one day, I started bleeding then bile came out. I had a fistuala
We waited 3 months to see if the Fistula would close and one time, my temp shot to 102, I was hospitalized, they did a cat scan while I was there.
My doc told me this happens like 1 in 4 people, you have a fistuala, I cannot do a fistualitectomy, the only way to fix this, I have to take more out. So I had another surgery. He removed more small and large intestine. Surgery 4
All in all I lost about a foot and 4 inches of intestine. but I still have problems, I mean, I can understand occasional Big D, especially since I don't have a Gallbladder, but I have these pains in my leg since. I have had MRIs done and cat scans, everything shows good. I take B12 once a month injection and take it by mouth too.
The meds I'm on are below, This tingling is about to drive me nuts, A back surgery started all this, my doctor has checked multi-times to check B12 and I go to him he's a GP and his father whose a gastro doctor. A new one.
I was on Flagyl once. But not long and the tingling was before that.
I have to go to a pain doctor because the pain in my leg and would like to get off the pain drugs. Any info would be great. Its been a BAD 2 years.
Also I have had new things, like eye problems, and I had pneumonia and bronchitis.
Thanks
Drugs, Neurontin, Oxycontin, Oxycodone for breakthrough, Losarten, aetenol, zanaflex, asacol B12 once a month, vitamins and Benadryi
Surgeries
L5-S1 fusion surgery 2010
Gallbladder removed 2010
ileum removed resection 2011
Another resection 2011
MRIs and cat scans nothing, except at the same time period, suddenly I start having bathroom issues lots of the Big D. I then had a bad problem, I went to bed one night and woke up, just didn't feel right, could not go to the bathroom. But my stomach felt full, so I decided, I will throw up and get it out. Wrong move, I couldn't stop, I kept throwing up like crazy, ended up at the hospital found out about Zofran, which is a miracle drug, but I had a blocked intestine. Also I learned do not trust nurses, I had to drink all this crap for a cat scan, I get the cat scan over with, sitting in the waiting room. I feel like crap again, I throw it up, I figured their done. We'll this nurse, thought, I was starting it up again, her and couple others decide to NG tube me, that is painful as can be. When they left the room. I took it out, lol, ticked them off, but I made a deal if I started getting sick again, they could do it. But they literally ambushed me, and I thought it was unfair. I had to drink a bunch of stuff then hold it down, when I was already throwing up. It was stupid for them to do it. I find out and in the hospital for 2 days eventually everything started going.
I went to this gastro doctor that I ended up firing, mainly because he left me hanging in pain for 6 months. He did a colonoscopy and, i'm not a doctor, I was like, it doesn't look right. But he made me wait till he went to a doctors conference, came back didn't know. But they were about positive that my gallbladder was having problems. So they removed it. Later on I talked to the surgeon and sent him the colonoscopy and he said, if I would have known this, I wouldn't have done the surgery. Surgery 2
By this point I was done with this Gastro doctor, still Bad D, and he wants to do another colonoscopy, that's when I fired him. I talked to some friends and found this colorectal surgeon, that's famous in Atlanta. He took one look at my colonoscopy and MRI and was like you got Crohns and bad. There are no meds that will help you, you have to have surgery. THe thing is he thought, I already knew and I was like no, this is the first time I have found out. I asked him like my past gastro doctor, do you need to do a colonoscopy to make sure? He was like do you want to go thru another? I was like Hell no. And he was like me either if I can help it, Ive been doing this for 20 years, you got Crohns.
So I had the surgery and he removed some of my ileum and some of my large intestine. He was getting married and it was a hellish surgery to me, After 5 days in the hospital they said I could go home. They said your going to get drainage, we'll after 3 days, I was still in massive pain, eating very little. My sister is a nurse anesthetist and she took a look at my drainage and she was like that's not drainage that's poo. We'll back to the hospital, my doctor got back. For 13 days I was in the hospital and they got all the crap out, and everything sealed. I thought I was going to die from going septic. Surgery 3
Also in those 13 days, everything was thru the tube.
So I finally got released then my wound looked good then one day, I started bleeding then bile came out. I had a fistuala
We waited 3 months to see if the Fistula would close and one time, my temp shot to 102, I was hospitalized, they did a cat scan while I was there.
My doc told me this happens like 1 in 4 people, you have a fistuala, I cannot do a fistualitectomy, the only way to fix this, I have to take more out. So I had another surgery. He removed more small and large intestine. Surgery 4
All in all I lost about a foot and 4 inches of intestine. but I still have problems, I mean, I can understand occasional Big D, especially since I don't have a Gallbladder, but I have these pains in my leg since. I have had MRIs done and cat scans, everything shows good. I take B12 once a month injection and take it by mouth too.
The meds I'm on are below, This tingling is about to drive me nuts, A back surgery started all this, my doctor has checked multi-times to check B12 and I go to him he's a GP and his father whose a gastro doctor. A new one.
I was on Flagyl once. But not long and the tingling was before that.
I have to go to a pain doctor because the pain in my leg and would like to get off the pain drugs. Any info would be great. Its been a BAD 2 years.
Also I have had new things, like eye problems, and I had pneumonia and bronchitis. Thanks
Drugs, Neurontin, Oxycontin, Oxycodone for breakthrough, Losarten, aetenol, zanaflex, asacol B12 once a month, vitamins and Benadryi
Surgeries
L5-S1 fusion surgery 2010
Gallbladder removed 2010
ileum removed resection 2011
Another resection 2011
