Jenna's Story

From the time I was about 18 years old I had attacks of bowel pain and had no official diagnosis until the bleeding began when I was 25 (before that I was told I had IBD.) I had a colonoscopy and was diagnosed with Ulcerative Colitis and subsequently put on Mesalimine capsules. It was pretty mild, just loose bloody stools, not a lot of pain at first. As time went on I never really saw any remission, the symptoms always remained in varying degrees. My stools never were solid again and always bloody and full of mucus. I had several bouts of what felt like partial bowel obstruction but no one ever did anything about it, I just suffered through it until it went away.

I became pregnant with my second child at 29 and was on Aasacol and Mesalimine enemas, the pregnancy seemed healthier than my first had been seven years before. Towards the last part of my eighth month I was unable to hold the nightly enemas and was having a lot of rectal pain and bleeding.

The doctor decided to induce at 34 weeks (March 13, 1998) and I was excited to deliver vaginally after I had a cesarean with my first child. The labor went fine but when I delivered, my vagina ruptured from the urethra all the way to the cervix. The baby was only 5lbs.4oz. and the doctor didn't even realize I was in trouble until he couldn't control the bleeding. I began to loose consciousness and was rushed from the LDRP room into emergency surgery. I was sewn up, drains were put in and I had several transfusions. I remained in maternal ICU for two days.

The doctor said he had never seen anything like the rupture I had experienced except for someone who had a forceps delivery of old - or an enormous baby. He consulted with several other doctors and the general consensus seemed to be that because of my UC history I had "brittle tissues." I missed those first two days of bonding with my little girl, but finally went home after a week with stitches and drains. My UC was really bad, the bleeding heavy, but I couldn't correctly use the enemas the doctors told me to. I was in too much pain, but I tried anyway, I was only able to hold them for a few minutes, which wasn't really effective.

One week later, just days after I had the drains removed my baby had a bout of apnea and we took her to the hospital. She was admitted for observation and had a bunch of tests. I never left her. I slept in a chair beside her crib and ate Tylenol and Aasacol until the fourth day (March 31, 1998) when I began to bleed profusely. It was vaginal and I was immediately rushed to the ER two floors below. By the time I got there I was losing consciousness and there was blood all over. All I remember was people trying to get IV lines in both my arms and the nurses slipping on all the blood. They tried everything from packing to pressure and nothing was working, I couldn't breathe even with an oxygen bag on. It was horrible. Within moments I was rushed from the ER to the OR.

That is all I remember until I woke up in the Cardiac ICU six hours later. I was hooked up to every imaginable tube and wire. My chest felt like a weight was crushing it and I couldn't breath. I lost consciousness again until the next day when I woke up and was told I had bled out and had suffered a cardiac arrest. I had received 10 units of blood, pretty much had my entire blood supply had been replaced. They had found I had shed three large chunks of retained placenta which caused the hemorrhage. Cautery and a D&C had stopped the bleeding. Luckily, I had been in the hospital when it happened, otherwise I would not have survived. Because I had been young and in shape, I had suffered no permanent hard muscle damage in the heart, that they could see.

I was transferred from CICU to the Antepartum unit and remained there for two weeks with unexplained fevers and painful pleurisy in my right lung. My UC was really bad and I was bleeding a lot, but the doctors just kept telling me when my body settled down after having such a trauma and when my postpartum hormones regulated, I would be better.

I went home and never did get better. I was put on oral steroids in increasing doses in addition to the oral Aasacol and the enemas. By the time the baby was six months old I was steroid dependent, had a moon face, joint pain and had so much edema you couldn't even recognize me, and still I couldn't stop the bloody diarrhea. I had began to become incontinent. I wore a diaper because I would spontaneously pass bloody mucus. Finally, when I began to bruise easily, I was put into the hospital and taken off all food (November 7, 1998.) When five days of that didn't work, A PICC line was put in and I went on TPN. I remained on that all through November. I missed my baby's first Thanksgiving. A few days after that I had another colonoscopy. Nothing had changed. I was on IV steroids and all kinds of medicine and had not eaten anything by mouth for three weeks and still I was passing blood and mucus. My weight had dropped from 130 to 110.

I was told that I needed a colectomy and on December 2, 1998, at midnight (after waiting for seven hours for an OR to open) I had the six and half hour operation that removed my colon. I woke up with an ileostomy and a ton of pain. My epidural didn't work and the anesthesiologist wouldn't believe me for hours until they tried to remove it the next morning and found it had sub-Q'd. Idiots!

Anyway, I had a lot of emotional issues - the steroid dependency didn't help and neither did the fact that it was the middle of the holiday season and Ihad a new baby at home that I could not see. I didn't seem to be getting well either, I developed a bladder infection, and was feeling really ill. Finally they said I was ok to go home, but I didn't think so. I hurt so bad and felt so sick. I was discharged anyway on December 20, 1998, that night I woke up at home with a raging fever (104) and chills.

My husband drove me to the hospital and by the time I got there I had to urinate but couldn't. No one believed me with that either. They put me in the hallway and told me the feeling was all in my mind. In desperation I grabbed an orderly and begged him to get a different nurse to take me to the bathroom and he did, but I still couldn't go. Skeptical but willing, the nurse finally catheterized me and got about 850cc's of urine out! I had a catscan soon after and they found a huge pelvic abscess, which was pressing on the nerve that runs to the bladder and had stopped my ability to urinate.

I was rushed into emergency surgery that night to have the abscess removed and the area flushed and drained. Again, I had lost blood and was transfused with two units. I woke up with a horribly large tube up my rectum attached to a Foley bag (I had two inches of rectum left, it had been stapled closed at the top, how convenient for the doctors to have easy access to the abscess area!) I drug around that drain like a tail for over a week. It was one of the most painful things I have ever had! When they removed it I saw they actually had a toggle bolt on the end of it which had been pushed up beyond the rectal stump and the pressure alone was what held it in place. Yukk!!!!

Well, I kept a fever and had periodic catscans for weeks. I was on four different IV antibiotics and had horrible reaction to Vancomycin. I developed sores in my mouth from a yeast infection (from the antibiotics). I was down to 102 lbs (I am 5'8!) I missed Christmas and New Years. I finally left the hospital on January 6, 1999. I was weaned off the steroids throughout the following months and coped with my ileostomy as best I could. I just felt numb. I wasn't bonding with the baby - or feeling much of anything.

As the steroid doses decreased the problems with my rectal stump did too. I was constantly passing blood and mucus. I passed all the staples they had put in and finally pain began to set in. By the summer I was having horribly painful periods and crippling chronic pain to the point of losing my ability to urinate. I sat on a heating pad all the time. I had to catheterize myself to urinate. Finally, that fall the doctor decided to go back in and remove the diseased rectal stump and check my uterus and bladder for adhesions.

On October 7, 1999, I had a complete proctolectomy. The doctor found my uterus had tipped back into the rectal area and was being squeezed by adhesions he removed it as well, again I bled a lot and the cervix had to be removed to stop the bleeding. I was transfused again. Two units this time. I have to say I recovered pretty quickly from that surgery (physically at least)!

For the last four years I have had only one problem; a bowel obstruction caused by peanuts! I was in the hospital a week and I will never eat another peanut in my life! I can say that the quality of my life is better because I am not sick and I can go anywhere and do anything. But I can't say I am doing wonderfully in the emotional area. I have had marriage problems. I still feel distant at times from the world - from my dreams. I have body image issues. But, I am here and moving forward. Doing the best I can. Thanks for allowing me to give you my story, I have never shared it with anyone except my family.

...Jenna

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