Posted 1/23/2011 10:09 AM (GMT -6)
I too was diagnosed in 1975. In October to be exact, I had just turned 18 yrs. It started at first with these cramps that came out of no where. I would be walking down the aisle at work (nurse's aide for generic patients) and these cramps would come that would literally almost drop me to floor. Within a short time I started having diarrhea. Even drinking a sip of water would cause me to run to the bathroom. Went to my family doc and he thought at first it was just a bug and gave me Lomitil for the diarrhea. Well things continued to go from bad to worse and the diarrhea was now just bloody mucous, he sent me to my first GI. She did a battery of tests which included a barium enema (will never do another), a upper GI, and tons of sigmoidoscopy and on October 31, 1975 diagnosed me with Crohns Disease. I was immediately put into the hospital as I was emaciated from the diarrhea and lack of food. By the way from start of symptoms to diagnosis was 3 1/2 weeks. I went from 118 lbs to 93 lbs in 3 weeks time.
I was put on IV fluids, prednisone 60 mg. and Azulphadine. They slowly started putting me on a low residue/fiber diet and I could have nothing with milk in it at all. After about 10 days I was discharged home, and kept on this diet and meds for 3 months until my flare ended. Once the flare was over I stopped the Pred and Azulphidine and went back to a more normal diet.
I stayed in remission until about 9 mos after the birth of my second child in 1980. I went to a new GI and he first did a sigmoidoscopy and when things wouldn't quiet down hospitalized me again. There I had my first colonoscopy. I was sedated and loved it as I didn't even know the test had been done, so there cemented the idea that I would refuse any further barium enemas. On this flare I stayed in the hospital nearly a month, till they could get the flare back under control. This really freaked my then husband out, as he had no idea how serious this disease could be. And to be honest, I didn't have a clue either. Got this flare back under control with Azulphadine and Pred and my low res diet again. This one lasted about 3 months too. I stopped all meds once I felt better about 3 mos.
After that I went into remission and stayed there until April 1999. That is when I had my first flare in nearly 20 years. It was a mild flare (in my eyes) with just the usual crampy diarrhea. The put me in the hospital on April 15, 1999, gave me some pain meds to ease my discomfort and did another colonoscopy. This one was not pleasant for me at all, as I had been on demerol for a few days so my pain med tolerance was very low and I felt way more than I should have. Very painful and traumatic. But once again they saw the Crohns and put me back on Pred, low residue diet, and I had my first experience to Pentasa, as I had become allergic to Azulphadine. Samething as in the past, took about 3 months to get rid of this flare. Doc at that time wanted me to stay on Pentasa, but after about 3 months I stopped taking it as it gave me more diarrhea, but it did quiet the flare down.
Also, before this 1999 flare, I had had what I now realize were some hints the Crohns was percolating, although I didn't know it was CD, they thought I had appendicitous and remove it, turns out it was perfectly normal. I think it was actually a partial obstruction, but because I didn't mention CD, they thought it was the appendix.
So went back into remission and enjoyed my stay that way eating whatever I wanted and just went on living my life like I didn't even have the disease. That was until January 2002. I was at work one day and got these bad stomach cramps that came in waves much like labor pains. As the day wore on they got worse and worse. I felt like I had to go poop, but no stool or air would come out. So on my way home from work, I ended up going to the ER. They gave me some pain meds and said I was constipated and had a gastritis attack. Sent me home with some Levsin. I went home and slept that night and woke the next morning feeling a little better, but still kinda sore. Stayed home from work and took it easy. At lunchtime I was hungry and went to Taco Bell and had a bean and cheese burrito. (dumb I know now). Within a short time those crampy waves of pain started again and got so bad I had to call my niece to come get me and take me back to the ER. There they did a battery of blood tests, and another set of adominal xrays, but this time I mentioned CD and they saw the obstruction. I was admitted, had an NG tube inserted to try to drain the gunk from my intestines. They did a SBFT the next and put the barium down my NG tube to get a good look at the obstruction. It was so tight that it was immediately set up for surgery 3 days after admission. I was led to believe it would be done via laproscope, but becuz of a CSection in 1979 I had alot of scar tissue and they had to open me up. They removed 12 in small bowel at TI and another 6 inches of the Cecum and large bowel. When I woke up the pain was SOOOO bad. I was afraid to even breathe deeply as it hurt so much. I spent the first two days in ICU and then moved to a regular hospital room. My roommate was diagnosed with colon cancer, so we were both on the toilet alot and in lots of pain. I was on Demerol every 3 hours for nearly 9 days. about 6 days in after surgery, I developed a infection in my incision. They inserted a Picc line in me because my viens were shot, and reopened my incision and started the the wet/dry packings. Very traumatic for me as it was just raw meat. After 10 days in the hospital I finally got to home. I had a nurse come in 3 times a week to change my dressings and my hubby did it the other days. It took me 8 weeks to recover from all that and go back to work. My gi at the time said since I just had surgery I no longer needed meds, so I didnt take them AGAIN.
about 2 1/2 years (late 2004) later I developed alot of nausea. I thought I had a ulcer or something, but went back to my GI and he said no its not an ulcer, I think its your CD. Over a period of approx 6 months they did a csope and a SBFT and discovered another stricture at the reconnection site. Also, tried Pred and Pentasa without sucess. Was sent back to the surgeon and set up for another resection. That one was done by the same surgeon who did the first almost exactly 3 yrs later in Jan 2005 . It took him 2 hours at the beginning of the surgery to just clean up all the scar tissue that was rampant in my guts before he could remove the 5 inch stricture. Woke up again in alot of pain, and was on a Dilauidid pain pump for about 6 days and then moved to Percoset. Got ANOTHER infection in my incision and had to go thru the whole wet/dry packings again and was out of work for 8 weeks again. This time I said I want meds to control my CD from now on and was put on Asacol and have been on it faithfully since. Later that same year in Sept 2005 I had to have a liver resection becuz of a tumor on my liver. Not sure what caused that. After that surgery my surgeon said that they will not do any more resections unless they are life or death, becuz all the scar tissue and adhesions I have, said it could be dangerous for me.
So since that last surgery I now take my meds religiously, follow a modified low residue diet, learned I am lactose intolerant, and thats also when I first found Healingwell (2005). Its also becuz of my experiences that I am so pro maintenance meds now and always try to keep folks on their meds so they don't have to experience the same trauma I and many others on this forum have had to live thru. I have never had to take a stronger med other than Pentasa or Asacol. I did about a 6 mos stint on 6mp but it always caused some discomfort in my right side and LOTS of hairloss, so I just went back to the Asacol only. And that's where I am at now. By the way I suffer with stricturing type of CD. Hope this helps. Hugs!