Sari's Story

Sari, Age 45

I have likely had Crohn's since puberty. It was not diagnosed until I was 22. My Crohn's behaves like a Pac Man game in that it eats intestine in a direct line going North! It started in my large intestine and began to destroy my small before surgery was indicated. At age 27, I had my anus, rectum, colon (large intestine) and a foot of small intestine (Terminal Ileum) removed. This is called an Ileostomy. I have a small piece around an inch high and an inch in circumference of intestine brought out to my abdomen (stoma) to which a medical supply appliance (Barrier and pouch bag) is adhered (and changed weekly) to collect stool waste. That was in 1987. Sari

After the surgery I felt 'HEALTHY' for the first time in my life and proceeded to try all kinds of adventures and travel. I got healthy enough to divorce my alcoholic husband. I had been in Alanon for years prior to the surgery and things finally clicked for me in esteem and self growth in my late twenties. At age 31 I was pregnant and had one of those blessed and glowing pregnancies. Labor was no picnic for an ostomate, but I did manage to have a vaginal birth. Many ostomy women patients have to have a C-Section. As it was, I had 100 stitches. My body seemed to recover outwardly from the surgery, but not inside. I was a scar tissue factory from uterus to intestines. Scars were making themselves intertwined in places they should not have. When I was 35, my Crohn's began again, but I was not aware of it because there was no pain involved in may case. Just inner destruction of the small intestine by about a foot!

In 1997, just as I met the love of my life, my husband, I had a year full of hospitalizations again including a second surgery to remove another foot and a half of small intestine and closing the first stoma site on the right to move it to the left side. I started feeling better again and recovering when my menstruation cycle began to become a monthly problem. By the end of 1998, I had a partial hysterectomy removing the uterus. I had keyhole surgery, which was really excellent in recovery time. My uterus had formed scar tissue to the bladder, intestines, the wall of my body and every other thing it could - so it was a good thing to take it out and I do not miss my period or anything to do with it at ALL!

In the last part of 2001 was a very stressful year for our family, and when I am under prolonged stress, I tend to deteriorate in ability to maintain nutrition with higher ostomy output and vomiting. This escalated through spring 2002 and with some IBD diagnostic tests again, a final stoma scope (Ileoscope) was positive on the return of Crohn's Disease exactly where the 1997 surgical splice left off. I have 2 feet of illness attacking the 17 feet I have left. Currently I am on Budesonide with seemingly good effect. I utterly failed Pentasa for the first try at wiping this flare.

All this has also led to applying for Disability from Social Security. Which causes STRESS. I am lucky to have a husband who respects what the disease can do to a person in body and soul. Our son is a good kid who has a broken mom, but knows he's loved in lots of other ways.

I HAD SUCCESS in application for the SSDI. It was hell to go through because of the 'personal inventory' I made myself go through. Talk about 'getting real'! I used more than the allotted space to make my case. Because I was painfully honest about my condition, had a letter from my doctor and did all the things with a vengeance for thoroughness - I made it under the wire without a fight. I had a ton of guiding and caring friends from Sux (www.ibdsucks.org) who'd blazed the trail before me.

More surgery in 2004! I birthed a hernia in late May and got right on the doctor route to do something about it. In the meantime we lived a whole summer, found and moved into a house - and by November I had surgery to repair the hernia which had gotten to the size of a grapefruit. To do this we tried the KISS principal. The surgery to repair the hernia was a success, but because my surgeon had to go in through the stoma (less invasive than a full mid-line cut), the new stoma was not going to work for the long haul. With adhesions and body lay out common sense, we decided to move the ostomy back to the right side. This was done December 7th. I am satisfied with the outcome although am going through a longer recovery period. During surgery, no disease was present! I will stay on maintenance drugs to keep it this way.

Life is STILL good, and with all challenges life has handed us, I can still say that.

In short, IBD SUCKS, but I'm still fighting any where and any way that I can to bring public awareness and compassion to rid the world of Crohn's and Ulcerative Colitis with all the excellent people I know doing the same.

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