My Life With Crohn's Disease
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Hello! I just thought I'd share MY Crohn's story. For years I had the fastest digestive tract in the East. I was always thin but appeared to be healthy. That is, until I was pregnant with my third child...
During my third pregnancy I was taking my prenatal vitamins, plus 6 iron supplements a day. Now, as you may know, iron will normally cause constipation. Not in MY case....it was the other way around for me.
After Ryan was born in February 1995, I decided to tell my OB/GYN that I was having problems. She did an internal ultrasound and noticed that my bowel looked abnormal. She then referred me to a Gastroenterologist.
Months went by, I had a colonoscopy and upper endoscopy. Both tests were normal. My GI was stumped. He didn't believe that I had Crohn's, so he decided to send me to a General Practitioner. I can't figure out why he never performed a small bowel follow-through (SBFT) before referring me to another doctor.
Starting in November 1995, I started having the WORST pains in my life....worse than labor and childbirth. This went on for 3 months. The pain was so bad it would take my breath away. I had fever and chills. Severe pain. I didn't do anything but lie on the couch after work. I was rapidly losing weight.
On February 7th, 1996, I was in excruciating pain, with fever and chills. I suddenly became nauseous and vomited. That was the straw that broke the camel's back. I woke my husband up and told him to take me to the Emergency Room.
While at the ER, they took lots of tests and an abdominal X-ray. The X-ray showed an obstruction in my small bowel. However, the doctor thought it was my appendix and decided to do an appendectomy with exploratory surgery.
Upon opening me up and removing my appendix, they found 2 feet of perforated bowel. They performed a resection and took out the diseased intestine. My surgeon told me that I obviously had Crohn's for quite some time, and if I hadn't gone to the ER that night, it would have burst within a few days and killed me. That's how badly perforated my bowel was, and it was leaking toxins into my system.
I felt great for a while after the surgery. Then in August 1996, I had a SBFT which showed inflammation again. The problem is that I was seeing a different GI at the time, and he never even told me that there was inflammation, and never put me on any medicine.
In Feburary 1997, I switched GI's again. My third one at this point. When she looked at the results from the SBFT, she had me do another one. Still inflammation was showing....about 8 inches. She put me on the dreaded Prednisone in an attempt to control the inflammation. She also had me have another EDG, which showed some tiny Crohn's ulcerations in my duodenum.
After 8 months of being on Prednisone with no relief, we decided that surgery was the only thing that would take the inflammation away. So, in October 1997 I had another resection. This time they took 8 inches of small bowel.
Now in June 1998, there's a possibility that it has returned already. I'm waiting to see what happens this time.
Update: Well, on July 17, 1998, I had a Small Bowel Enteroview which showed a tooth-like pattern consistent with active Crohn's Disease and a stiffening of the end of my terminal ileum. The stiffening is probably due to adhesions/strictures from my previous surgeries. Since there was no inflammation, I was saved from the dreaded prednimonster this time. I'll just have to wait and see what happens now....
Well.....my nightmare continues....today, August 7, 1998 my gastroenterologist put me on the prednimonster for a short time. I'm not happy about it. I keep having flashbacks to last year when I was on it....my only hope is that it will be for just a short time.......
September 9, 1998......well, my doctor called. She has decided that it's time to try something different. I will start taking 6-MP today and hope it helps. I'll get to start tapering the prednisone next week, but will have to remain at 20 mgs for about 3 months until the 6-MP kicks in. I can't wait to get off the prednisone....
October 23, 1998.....well, another update on my life. I found out last week that I have 2 small kidney stones. Kidney stones are just another wonderful thing that can happen to a person with Crohn's Disease. Mine are very small....approximately 4 mm each, so my urologist will let me pass them. He says I should have minimal pain...
I had my annual colonoscopy yesterday. The results were not what I wanted to hear. My GI said that I have approximately 35 centimeters of inflamed colon starting at the top of my rectum, going up into my colon. This could be Crohn's Colitis. She took several biopsies of my colon. We won't know much until the results come in. This was my 3rd colonoscopy and the first time I have had an abnormal result. I guess the Crohn's just likes me or something...
November 25, 1998.....I received the results from my colonoscopy a couple weeks ago. There was actually 35 to 45 centimeters of inflamed colon. The biopsies came back as "chronic inflammation" and not as CD or UC. My GI believes that I was beginning to flare, but maybe the 6-MP and prednisone kinda stopped it. Shortly after that day, I had one day of passing a lot of blood. It only lasted a day, so I'm not too concerned about it. I'm now prednisone free, for the time being. I went to the Urologist yesterday, November 24th. He performed a cystoscopy and found that the kidney stone in my bladder had passed. I'm having a lot of back pain right now, which COULD be the other stone trying to pass from my kidney. I'm not sure. Right now I'm in the middle of doing a 48 hour urine catch. The urologist wants to find out if the stones are Uric Acid stones or Calcium Oxalate stones. He believes they are Uric Acid, since they didn't show up on a regular x-ray. Uric Acid stones are linked to dehydration, which is a common effect of Crohn's Disease. However, Calcium Oxalate stones are more common in Crohn's Disease patients who have had their terminal ileum removed.....
Living with Crohn's isn't easy. It's tough on my family, but we deal with it. I have a positive attitude most of the time. I've learned to accept the fact that I have a chronic illness that will probably be around for the rest of my life.
My goal in life is to keep my family as happy and healthy as I can, and to help others learn to live with this disease.
If you have Crohn's Disease, or ANY chronic illness, all I can say is.......
Take One Day At A Time.............
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