Kathie's Story

I am a 63, soon to be 64, year old Mother of 4 grown children and 6 Grandsons. Yes, all boys, ranging from 25 years of age down to 5. I have been so healthy all my life so who would have thought I would get so sick last year? I had one attack of diverticulitis about 5 years ago but that was the only one. My brother had emergency surgery for perforated colon about 10 years ago, had a colostomy and reversal, my Mom had surgery about 6 years ago, with no colostomy, at the age of 88 with no problems. Now a cousin just had surgery, no colostomy but major problems and going back to Mayo Clinic next month.

I started with the diarrhea last March. It was livable for about 3 months. Some problems in the morning but the rest of the day I was OK, just a sore stomach and bum from the morning bout. By about late May it started getting unlivable! I was going to the bathroom non stop, started wearing pads then heavier pads as I wasn't making it to the bathroom 20+ times a day.

By June 19, just before my birthday, I went to the emergency ward in terrible pain. They diagnosed diverticulitis and put me on antibiotics and told me a clear liquid diet for 3 days. The pain got a little better but the diarrhea didn't stop. Then, when I would eat, the pain and diarrhea was bad. This went on and on. I went on Limodil (sp) for diarrhea but it gave me an upset stomach and then in about 3 days, constipation, so would have to not take it and then the diarrhea again.

I had retired the year before and had no insurance so getting help was very difficult. I went to one DR several times who tried to figure out what was wrong with the cheapest tests. Nothing there. She then wanted me to have a colonoscopy. Right! $2,000 with $1,000 up front! Not a chance! So, I tried the local county hospital. Another wasted 2 weeks while the hospital clinic and the DR couldn't seem to get information back and forth. That finally happened, this was in Aug. by then, only to be told they could see me in Nov. OMG I would have been dead by then.

I did the only logical thing I could do at that point and just went into the ER at the county hospital. So, then, we started on the rounds of trying to get me a colonoscopy! I would throw up the junk you have to drink and be so miserable from sitting on the toilet all night and the burning bum. This went on for 2 tries till I finally ended up back in the ER in late Aug. Was hospitalized for 3 days totally dehydrated. No surgery, of course.

Tried another colonoscopy in Sept. and made it through the prep that time only to have them start and have to stop right away as I was still too swollen and inflamed. So, back home, to bed and 20+ trips to the bathroom again!

I was wasting away, eating and drinking less and less. Couldn't even force things down me. Finally, in early Oct. my daughter came over again, and took one look at me, who had been throwing up all night when not on the toilet, and took me back to the ER. I was admitted again, dehydrated again and still the non stop diarrhea. I was at 90 pounds by then. They were still saying no surgery though. Would have to wait another 6-12 weeks! So, I'm lying there thinking that I would only come home to die. I couldn't eat or drink, was losing weight every day and this wasn't going to work.

Fortunately, the best thing that ever happened to me, they found a vaginal fistula and, thank God, that forced them to do surgery on Oct. 14. They removed part of my rectum, repaired the fistula, removed my ovaries and uterus, had to stop surgery twice to call in specialists to sort out tubes or to look through a microscope at the "mass" I had in there to rule out cancer and then gave me "It", my wonderful stoma. You know the ugly cousin who came to visit? The expected 1 1/2 hour surgery lasted 6 1/2 hours.

I spent another week in the hospital with a few real rough days but gradually started feeling better. Came home to a rough month recovering, crying every day, (I have no idea why?) just trying to get better and frustrated that it was taking too long! Even though absolutely everyone told me how fast I was recovering considering what all I had done to me. Oh, then the mucous started from my rectum. Non stop all day and all night. Back to the pads again!

This went on for over 2 months to the point of exasperation but I decided this was not going to keep me down. Just carried pads in my purse and knew where every bathroom in south Seattle was. At least the mucous was clear, didn't smell and didn't burn my bum. It's still there, I still have to wear pads but much less than before. Usually when I cough or go to the bathroom.

I finally got my appetite back and was eating everything in sight. I've gained back all the weight I lost, and then some. By January I was feeling so good that I cleaned every closet, cupboard and drawer in the house - threw out, gave away and shredded lots of things.

I have had no problems with the colostomy. No allergies, no embarrassing moments and none of the other problems I read about so many people having. Change it bout every three days, can't seem to go longer than that.

I am now waiting for my reversal and hoped to have it next week. But, I have developed a kidney fistula. It's causing me no trouble at all but because of it the urologist, surgeon and the colonoscopy having to all coordinate, I can't get the surgery till June 16th. This was disappointing as, again, I will spend my birthday in bed and can see most of the summer being lost again.

I'm half scared as I don't want to go back to what I was last year and would keep this in a heartbeat before I would go back to that. I have heard some, not so good, stories about the reversal and the DR did say I would have diarrhea for a while. I just hope to be able to attend my Grandson's wedding in mid July but as far as going back to South Dakota to see my Mom, family and friends, I'm wondering if that will be possible with diarrhea. I missed two trips back home last year for my High School reunion and Mom's birthday in July then my nephew's wedding in Oct. Dang, I wanted to go this year so hope that will work for me. Just dread thinking about getting on a plane if I have diarrhea.

I know how very fortunate I am as all the web sites tell of horror stories. I thought I had the year from hell only to realize there are so many others who have had years and years of hell. I know that I can get a reversal that many have no hope of ever getting. So, I'm trying to think positive and everything will go great for my reversal.

God bless all you wonderful people from whom I've learned way more than any of the DRs and nurses. And thank you, Shaz, for the web site.

...Kathie

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