I'm new to the forum. I was diagnosed with Crohn's disease 4 years ago, but Dr's said I may have had it for 5-7 years before being diagnosed. According to my Dr. I have a severe form of it. My story began with noticing that things I would eat would suddenly appear in record time as trip to the bathroom. I lost weight and finally went to my family dr. and he treated me with flagyl - thinking that maybe I had a parasite. This did not work. After some months of just living with this problem I started having a pain in my right hip and lower back. Thinking that I had some sort of bursitis the dr. gave me a Kenalog injection into the hip area. This did not help at all. So this went on for a couple of years back and forth. It would subside and then suddenly appear again. I would lose weight and then gain it back when I was feeling better. Up and down!! Looking back and with what I know now I was under a lot of stress at my job and this was actually putting me into a flare. I switched jobs and actually didn't have symptoms for several months. But, the hip pain came back and I was taking an Aleve or two every night. The pain was like a toothache. Always in my hip and back, never in my side. I finally switched my family dr. since my old one was retiring. Guess what? He found it odd and sent me to my gynecologist to have a ultrasound of my ovaries. They found an ovarian cyst. So I thought that's what the pain was from. Still had tons of trips to the bathroom but didn't really worry about that too much since I was losing weight( which I have never been skinny and thought it was an excellent side effect). Well basically I just decided to live with it until... December 24, 2007. We always spent Christmas eve at my parents house and then went to see the lights after dinner. I never and I mean never eat nuts the way I did that night. They were there and I ate a lot of them. Well we piled in the SUV and went for a 2 hour Christmas light drive. By the time we got back I was in a lot of pain. So I took 2 Tylenol and went to bed. Didn't feel well for the next 2 weeks. Felt like I had the flu - high fever, shakes, cold sweats, pain in my side(not my hip). So finally I could take no more and went to the dr. He ordered a CT Scan and told me he would call me with the results. I went back to work and got a frantic call from him a couple hours later asking me why I was at work and not home:/ Well didn't know I was suppose to be home since I had worked 2 1/2 weeks already feeling this way. He told me to go home, lay on the couch, don't move and wait for his call. He even gave me his cell phone number and said if I got worse go immediately to the ER and call him so he could meet me there. I freaked! He suspected that my appendix or ovary may be what was causing all this pain. He called me a couple hours later with a time to be at my gynecologist in the morning - he actually made the call himself to set the appointment. Wow I was really freaking now.
So the next day I go to the appointment and as soon as he examines my abdomen I almost faint. He sets an exploratory for a couple hours later at the hospital to my amazement. I called in the family and away I went to surgery
Well my gynecologist found that it wasn't my ovary but he found a mass that he could not identify. Later he told me he thought I had cancer - he was very disturbed by it. He called in my family dr., a surgeon and a gastro dr. Well after reviewing my video and pictures they determined that I had an abscess resulting from a stricture and all those nuts had gotten stuck in there from Christmas So I was in the hospital for a week while they tried to cool down the inflammation without it bursting and spilling into my abdominal cavity. They put me on prednisone, pentasa and pain meds. I did have a colonoscopy and samples were taken and sent off - later a report from California confirmed my Crohn's diagnosis. Never ever thought I would have it - I knew some people that had it - but never me.
So instead of crying - like the rest of my family - I had my husband go to the library that week and I read everything I could about it while sitting in my hospital bed. I decided to change my diet and went dairy, wheat, gluten, and sugar free. I went extreme! I decided if I was going to take all this man-made medication, I was going to take some natural supplements also. So I was taking about 28 pills a day( this included my meds plus fish oil, probiotics, digestive enzymes, iron and B12). I was hospitalized a month later for an ulcer due to the prednisone. Only in for 3 days.
I was doing fairly well until July when I started getting urinary tract infections and they just wouldn't go away. Saw a urologist and he determined that I had food matter in my urine. This is when I found out about fistulas and how I may have one. I gradually got worse and finally went to a surgeon who I was not impressed with. I pushed my gastro dr. for a referral to the Cleveland Clinic and was really pleased. I waited till December to have my surgery and was in until December 24th ( year to the date this all started). They took out 13 1/2 inches of my small intestines, my appendix, part of my colon, and 3 fistulas (2 in the bladder & 1 to my rectum). I have been in remission for 3 1/2 years now and just had a tiny flare last month. I was put back on prednisone and pentasa, but now off both and on Imuran for life. Not happy about that but can't really do a thing about it. Thinking of going back on my "Crohns diet" again and I'm taking my supplements again too. I now know what to do. I am also starting an area support group and have my own online newpaper, blog and facebook group. I am really lucky to have the health I have and I know that my journey with Crohns has not been that bad compared to others. I am determined to help as many people as I can with all the support I can give. The advice I can give to all the crohnies out there: keep your head up, take control of your own health and never give up!
So the next day I go to the appointment and as soon as he examines my abdomen I almost faint. He sets an exploratory for a couple hours later at the hospital to my amazement. I called in the family and away I went to surgery
Well my gynecologist found that it wasn't my ovary but he found a mass that he could not identify. Later he told me he thought I had cancer - he was very disturbed by it. He called in my family dr., a surgeon and a gastro dr. Well after reviewing my video and pictures they determined that I had an abscess resulting from a stricture and all those nuts had gotten stuck in there from Christmas So I was in the hospital for a week while they tried to cool down the inflammation without it bursting and spilling into my abdominal cavity. They put me on prednisone, pentasa and pain meds. I did have a colonoscopy and samples were taken and sent off - later a report from California confirmed my Crohn's diagnosis. Never ever thought I would have it - I knew some people that had it - but never me.
So instead of crying - like the rest of my family - I had my husband go to the library that week and I read everything I could about it while sitting in my hospital bed. I decided to change my diet and went dairy, wheat, gluten, and sugar free. I went extreme! I decided if I was going to take all this man-made medication, I was going to take some natural supplements also. So I was taking about 28 pills a day( this included my meds plus fish oil, probiotics, digestive enzymes, iron and B12). I was hospitalized a month later for an ulcer due to the prednisone. Only in for 3 days.
I was doing fairly well until July when I started getting urinary tract infections and they just wouldn't go away. Saw a urologist and he determined that I had food matter in my urine. This is when I found out about fistulas and how I may have one. I gradually got worse and finally went to a surgeon who I was not impressed with. I pushed my gastro dr. for a referral to the Cleveland Clinic and was really pleased. I waited till December to have my surgery and was in until December 24th ( year to the date this all started). They took out 13 1/2 inches of my small intestines, my appendix, part of my colon, and 3 fistulas (2 in the bladder & 1 to my rectum). I have been in remission for 3 1/2 years now and just had a tiny flare last month. I was put back on prednisone and pentasa, but now off both and on Imuran for life. Not happy about that but can't really do a thing about it. Thinking of going back on my "Crohns diet" again and I'm taking my supplements again too. I now know what to do. I am also starting an area support group and have my own online newpaper, blog and facebook group. I am really lucky to have the health I have and I know that my journey with Crohns has not been that bad compared to others. I am determined to help as many people as I can with all the support I can give. The advice I can give to all the crohnies out there: keep your head up, take control of your own health and never give up!