Gayla Rye's story
"I hope my story helps someone out there. Life is good! You just have to be patient and strong because it is not easy. I feel if you can overcome this disease and all the surgeries you have done something.!"
My name is Gayla Rye and I am teacher from Southaven,MS (near Memphis, TN).
When I was 26 years old I got diagnosed with Ulcerative Colitis. I had no idea what this was and how it was going to affect the rest of my life. I did a little research, but thought the worst would never happen to me. Little did I know, by January of 2005 I was confined to my house with frequent and painful trips to the bathroom all day and all knight. I was loosing a lot of blood and had become very weak at this point. Still, I never dreamed of being put in the hospital.
I finally went in to see my GI doctor and he gave the option of being admitted into the hospital or just trying some more extensive treatments of steroids (which a month earlier had worked and put me into remission). By the way, my GI doctor was from Columbus, MS.
I was admitted into the hospital and discovered I was 5 weeks pregnant ( I guess this is what set me in an uproar). I elected to try and carry the pregnancy to full term. The doctors told me that if I had a total colectomy I may not be able to conceive in the future.
I stayed in the hospital off and on for three weeks. MY GI doctor kept telling that I was not as sick as I was making out. I was in HORRENDOUS pain. I was vomiting profusely and having VERY painful bloody stools. I kept begging for the surgery and my doctor felt it wasn't necessary since he had other patients way worse than me. So anyway, My mother and mother -in-law drove me two hours way to University of Alabama at Birmingham Hospital to try and see if I could get admitted to the ER. I didn't have any success because they did not run a scope so therefore could not see the seriousness. I guess my white blood count wasn't very high at this point. My hematocrit was also okay so, they sent me home with follow for one of their GI doctors. I had to get thought the weekend and I was terrified, I felt I wasn't getting the medical care I should be given.
I knew something wasn't right. I was sicker than I had ever been. This made the flu feel like a peace of cake. I wasn't eating or drinking, all I was doing was vomiting and having some form of diarrhea. I was VERY scared. Monday 3/07/05 rolled around and we set off for Birmingham, AL again. I woke up that morning so sick I could not muster up the energy to get into the car. My husband was begging and pleading and all I could do was cry ( I was soooo sick at this point). My mom & husband loaded me up on Phenergan & Lortab, hoping that would knock me out until we could get there. He drove 100 mph and I laid in the back of our Jeep Cherokee with the seats laid down like an ambulance. I just prayed to God the whole way. Luckily, we made it and I was wheeled into the waiting room vomiting the whole way. I was admitted as soon as the doc had seen me. He could not do a colonoscopy until that Thursday so they tried to stabilize me by giving me fluids, pain meds, blood transfusion( bc I had lost so much blood at this point), and steroids again (since you have to taper off them).
I started fainting everytime I had to get up to go to the restroom. After the scope, the doctor scheduled emergency surgery for a Total Colectomey with end ileostmy. I had no idea what this meant. I didn't care, I just wanted to be healed. The Ostomy nurse came in and drew on my abdomen and it still didn't really set in. However, the night before surgery I had a miscarriage (by now I was 10 weeks pregnant and this was very painful physically & emotionally). I went in for surgery 3/11/05 at 6:00 am. I was scared half to death. I woke up from surgery, and I was still sick as ever. I was vomiting green stomach bile this time. I was so sore and had been cut all the way from my navel to my pubic bone, and I had an ostomy bag connected. It was the worst experience of my life, I was terrified and still VERY nauseous.
My first GI doctor had said my nausea was from the pregnancy, but now I was not pregnant and was still vomiting. (my guess was it was not the pregnancy). I did well in recovery and then by Sunday night my husband had to fly back out to go back to his new job and all my friends and family had gone home. My sweet mother stayed at my bedside (thank God for her). I started having trouble breathing. Finally, I went into respiratory arrest. Both of my lungs collapsed and I was rushed to ICU for a week. I was not awake for most of it. I had to be strapped down because when I came to I was confused and jerking the ventilator out of my mouth and trying to pull the feeding tubes out. I was so scared. I started having seizures and the doctors didn't know why. My Potassium and Magnesium had bottomed out. I felt so alone in ICU because your family can only visit at certain times. I couldn't talk because of all the tubes connected to me. I started having panic attacks. Those were pretty scary itself. I really didn't know if I would make it alive.
At this point, I weighed 76 lbs, this was down from 115 lbs. I was a skeleton. I had this peach fuzz growing all over my back and stomach. It was really weird and later I found out that sometimes anorexics experience this because your body becomes so thin it goes into survival mode and a fur starts to cover your body and this is what was happening. Sounds weird I know, but it eventually fell off. I was losing hair by the handfuls. I hadn't had a bath or brushed my teeth in I don't know when (I was in HELL). After a week in ICU, I was released back down to the floor. I was still sick and couldn't walk. I had a catheter and chest tubes. The chest tubes were the most painful of everything I experienced. I feel for anyone that knows what I am talking about. I got out of the hospital Easter Weekend. I was still so sick and I told the doctors, but said it would take time. I had to be put back in the hospital 2 weeks later because of dehydration. After a week, I went home still struggling. My mom had to maintain the ostomy bag for me because I was still vomiting and just couldn't do it. I was scared of it. The doctors told me after surgery that my colon was the worst they had ever seen and it should have come out a long time ago.
I felt horrible until right before my J Pouch construction surgery. It took about 3 months to feel well again. I was exercising again. On July 12, 2005 I went back in for surgery. Everything went well, I was released in four days. Sore, but okay. The nausea came back, but I tried to deal with it by taking Zofran. I started having flu like symptoms and called the ER. They advised me to go to the nearest ER and have a CAT Scan since my fever was climbing. Sure enough, I had an abscess. Back to the hospital for a week.
The Interventional Radiologist put a T drain in my butt. It hurt!!!! So, I walked around with a tube out of my butt cheek and one out of my abdomen. It was awful. I kept it in for a month. Back and forth to the hospital for fevers because the abscess wasn't going away.
By this time, it was time for my takedown. Had lots of complications (fistula, no BM's, etc.). I had a NG tube for a week and a half. They had to open right back up after the takedown to repair the fistula. I was in the hospital a month this time. This hospital stay was a bad one. Once my bowels woke up it was the WORST. That lasted even for a while after I got home. I also had to go through physical therapy to learn to walk again basically. I was so weak. Again, I was released still feeling very sick.
It took about 3 months again to start feeling better. I know my story sounds like gloom and doom, but it is now April 1st and am doing great. I still have about 6 - 8 BM's a day and sometimes more, but other than that I can't complain. I am getting used to my system and feel great! I wanted to be detailed in my story because I think It is important that others that may have to go through similar experiences know that they aren't alone.
I felt so alone because everyone I was in contact with that had my surgery experienced no complications and had elected to have this surgery. All I am trying to say is, if I had someone to talk to that had some similar experiences, it would have helped. J Pouch.org has been wonderful to have. I was able to calm down after reading other people's success stories.
If anyone ever need to talk I will always be here if I can help in any way. I thank God everyday that I have my life back. We are now trying to conceive. The doctors are optimistic, but I guess we will see what happens. We don't have children yet and I am approaching 30 so we thought if I do have problems with fertility we better go ahead and find out now. I hope my story helps someone out there. Life is good! You just have to be patient and strong because it is not easy. I feel if you can overcome this disease and all the surgeries you have done something. Be strong and God Bless! I also wanted to say that my surgeon at UAB was wonderful. All of the staff took great care of me there.
Gayla Rye
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