Heather's Story

My name is Heather, I am 25 years old, and I am from Peabody, Massachusetts,USA.

The first time I noticed any signs that there was something not quite right with my stool, was when I was 23 in 2000. There was a small amount of blood. At my next visit at the doctors, I had mentioned it to my nurse. She responded "well, as long as the bowl isn't full of blood, I'm not concerned." So I had figured it was nothing.

But as time went on, I would see more and more episodes of blood on my stool. Again I had mentioned it to my nurse. Her response "well, sometimes when you go, if there is some straining you can tear the skin a bit in you anus, still, I'm not concerned unless the bowl is full of blood." Ok then.

A year had gone by, with more blood, then blood and mucus. Everytime I went. Enough was enough. Now I was scared. This wasn't normal. I called my doctor and insisted on seeing a specialist. They told me I couldn't get an appointment for another 2 months, but if I really needed to see someone I could call up Burlington Hospital in Massachusetts, and ask to see one of the gastroenterologists up there. So that is what I did.

I got an appointment w/a doctor to see him in a week. That day I was so scared to find out what was really going on in my bowel. Unfortunately he had to take a "looksy" inside without any meds to make it easier, How embarassed was I?

He told me it looked like I had Imflammatory Bowel Disease and I was put on Asacol. I was on that for awhile, but not much had changed. I had a follow up w/the gastroenterologist, and he had me make an appointment to get a colonoscopy for the next day. He wanted to see if it had spread farther. This time I would get some nice meds. to make it bareable.

I was sent home with that Go Lytely. It wasn't only coming out the bottom, I kept throwing up too. The colonoscopy showed that it had spread another 6". He then had me try Cortifoam enemas. Those helped a little. Then it went back to what it was before. Again I saw him, and he had me use Rowasa enemas. This is where things started to go down hill. I was going to the bathroom like 10 times a day, and I didn't see much improvement with the Rowasa.

Then one day I had come back home one from doing the Cancer walk, then had lunch with some friends. It was June. That night my stomach started killing me. Thought maybe it was something I ate. I was running to the bathroom, and just making it at this point. Thought I had the bug. Was out of work for two days. I had called my doctor's office, and they just prescribed a Tagament pill. Since I had a history of heartburn they just "assumed" that is why my stomach was KILLING! Lets just say, I changed primary doctors after that, and plan to sue. Went back to work, running to the bathroom, and slumped at my chair.

Back to the gastroenterologist a week later, and came to find out I had lost about 7 lbs. He had me go back to the Cortifoam, and see him in another week. When I saw him again, I had lost 7 more pounds, now weighing 117 at 5', 5'. Not good. He had me hopitalized that day. I had to have a pic line put in, and tried to eat a liquid diet. But my stomach hurt more when I ate, and still running to the bathroom. Only now I had to drag the IV with me. I stopped eating, and let the TPN nourish me. They had me continue with the Cortifoam while I was in there, and put on Predisone steroids. Then after a week, I was home w/a diet plan, Predisone, and still using Cortifoam. I drank so much water and Gatoraid it wasn't funny. I was wicked dehydrated, and ate what I could. Didn't sleep at night, because I was running to the bathroom every 20 minutes, and felt like I was being stabbed in my gut.

The next week I had a follow up again with my Gastroenterologist, and I had lost 7 more pounds now weighing 110. Again I was hopitalized. They did more colonoscopies and it was undetermined if I had CD or UC. But medications were not working. I was back on the TPN. And after a week they said it looked more like UC, and surgery looked like the last option. At that point I didn't care what they did, I was in so much pain, so weak and tiered, I gave them the O.K. to do the surgery. And on August 9th 2001 I had my colon removed. 6 hours of surgery and a blood transfusion later, I ended up with my stoma "Mildred". It was determined that I did indeed have UC. Now it was gone.

Waking up from surgery I was in a lot of pain, but that pain in my gut was gone!!! It took some getting used to my new friend, and went home in a week. Recovered 3 more weeks at home and went back to work. I ended up being anemic and had to take iron. My strength and weight eventually came back. And then on Feb 7th 2002, just 3 weeks ago, I had my J-pouch surgery, and have a new loop stoma "loopy". I am back at work now. Sometime in May, I will have the takedown, and be able to go the bathroom as normal again. No more stoma, no more bag. It has been a very hard 2 years. But I have gotten through it all so far some how. You just have to keep your spirits high. If anyone has questions, feel free to contact me. I know how scary it can be.

Thanks for listening to my story.

UPDATE:

Here is an update on what has happened since my last entry. On Feb. 7th 2002, I had my J-Pouch surgery. I woke up in some discomfort, but it wasn't nearly as bad as my first surgery. I had a new Loop Ileostomy, that was much smaller then my first. I decided to name him "Loopy". This stoma seemed to produce a lot of output, therefore I was told I had to drink A LOT of fluids. I came home on Feb. 12, and went back to work within a week. I gradually went back to the gym, and felt pretty good.

I hadn't expected to go in for my last surgery (the reconnection) until around May or June. But I got a call from the hospital on April 6th, that my surgery was scheduled for April 23rd. It didn't give me much time to worry, or plan. But I was glad it was sooner then later. I did worry about how things would work after. I had gone to the bathroom that way in so long. I didn't know what to expect, and just hoped everything would go ok.

The day of my surgery I was very anxious. I just wanted to be rid of this bag, once and for all. Once me and my fiancé go to the hospital, I was very nervous. They called my name fairly quickly, and next thing I knew, I was being wheeled into the OR. They started putting in the medication, and put on the mask, and told me to take deep breaths. I think I only breathed in twice, and all of a sudden I was waking up in Recovery. It was over?

I had some stomach cramping when I woke up, and felt nauseas. This was different from the other times. I hadn't felt nauseas before. I put my hand on my belly to see if "Loopy" was gone. And all I felt was some gauze. I was hoping he wasn't hiding under it. My fiancé said "It's gone." I felt relieved. I got up into a room, and I was still feeling nauseas. The nurse said that if I didn't pee, they would have to put in a catheter. So when I finally felt like I had to, I got up. Mind you this is only about 2 hours after the surgery. As I walked to the bathroom, I started getting dry-heaves. How painful was that with a sore belly? I tried to pee, with not much luck. And sure enough, they had to put in a catheter. Yow!! They gave me anti-nausea medicine that night, but the next day, again I got dry-heaves once I started walking. But each day, I walked those hospital hallways 3-4 times. I was determined to heal quickly, and get out of that too familiar hospital. I was only allowed water until I could "pas gas". But the first few days, I didn't feel like I had to do anything. I started to worry. My bowels just took its time waking up. Then one afternoon it finally happened. It shocked me. It was something that hadn't happened in a long time.

After I could eat solids, I was released from the hospital, and went home. But I had a lot of stomach cramping and gas. Especially when I ate. I got so bored at home, I went back to work just 7 days after surgery.

I am still having a lot of gas and stomach pains. I can only eat small meals. And I am on a Low Residue diet for 3 weeks, and can gradually introduce foods. I can't tell yet when I have to "pas gas", or go #2. So I just go to the bathroom, as I am not going to take the chance of having an accident. I had my stitches taken out this past Monday, and all I have now on my belly is a 2 inch scar where "Mildred" and "Loopy" lived at one time. My stomach is still very bloated. And my nurse says in time the cramping will get better. I guess where I was connected inside the intestine is real narrow. So that is where the cramping comes from. It has gotten a little better.

I am just happy to feel a little more normal again. It has been such a hard journey for me, and I finally made it to the end.

If anyone had questions, feel free to contact me. I'm here to help.

Heather

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