Well, some times when you tell a story, you leave out some details until you are ready to share them. And this happens to be one of those times. I've wanted to tell this many times, but didn't have the courage. I've now found the courage to let you know more of my story. After my surgery to remove the cancerous mass and perform a colon resection, my surgeon had to give me an ileostomy to allow time for my colon to heal. I would have an ileostomy until six weeks after completing 12 rounds of adjuvant chemotherapy. Having an ileostomy was very personal, so I only let a few people know that living with an ileostomy had become part of my life.
Read on with caution: If it seems like too much information, consider it an education.
What is an ileostomy you may ask? Click here for more information, but the short answer I tell people is, think of a colostomy, but instead of it being made from your large intestine, it's created from your small intestine. Therefore, I had to wear a pouch to collect my stool, but still had the ability to urinate on my own. This new way of life brought about many changes yet interesting experiences. I also learned a lot about the digestive track that I still use in my life after my ileostomy reversal.
My new appliance took a toll on me mentally, physically and emotionally. Mentally, I had to adjust to the fact that my body wasn't completely healed and God was still working on me. I so badly wanted it to be over after the surgery was done, but I had a daily reminder that it wasn't over just yet. After going through the most horrific experience of radiation and having such an invasive surgery, I was tired and didn't want my frail body to be put through anymore pain and suffering. I wanted to be me again. Physically, just imagine having to wear this device and always wondering if people could see it. This was a part of me, for now. I had to change my sense of style. I could no longer wear certain clothing items because my pouch would show or could open and leak its' contents. I began wearing baggier pants, no skinny jeans; looser fitting tops and blouses, nothing form fitting. I even had to be careful what type of underwear I wore because they had to fit under the adhesive of my pouch. Also, I had to be mindful which colors I wore because the lighter the color, the more one could see my pouch. I didn't purchase all the other products available to conceal the pouch because I had no intentions on having an ileostomy for a long period of time. It was a learning experience and I began to appreciate the simpler things in life and identified with other ostomy wearers. Emotionally, wearing this appliance made me feel less sexy. After losing so much weight I was already self-conscious, and this new way of life made it worse. I knew it was only temporary, but I still had to deal with my day-to-day reality until my ileostomy was reversed.
Nutritionally, because an ileostomy is formed using the small intestine, my body could not absorb many nutrients since it was released into the pouch through what is called 'output'. I could not eat raw fruits and vegetables because they were too fibrous and my doctor recommended a low fiber diet. Therefore I was now eating white rice and pasta, cooked veggies and chicken, fish, and turkey. Since I don't eat red meat and pork anyway, the proteins I ate were not a problem. It was the white rice and pasta along with very limited fruits and veggies. I love salads, but those had to be put aside, for now. I was also afraid of getting a blockage. A blockage, at its worse, meant having emergency surgery to unblock the small intestine. I was not going to have ANY of that. I was advised by the ostomy nurse to chew, chew, chew. I basically chewed my food until it was pureed so it would have no trouble passing through my stoma. I was no longer able to take my horse-pill vitamins because they would definitely block the opening of my stoma. I was supposed to drink at least ten glasses of water each day so that I wouldn't become dehydrated. But like I said, supposed to. I have never been one to drink enough water and this experience didn't change that. I did, however, drink more water when I'd eaten a big meal just to help it pass without any problems.
One would think that living with an ileostomy was the worst thing, but it was actually quite convenient. I would empty my pouch about 5-8 times a day and would change it every 3-5 days. I had to empty it more often right after having my chemotherapy treatment, because chemotherapy can cause diarrhea. Also, since I hydrated for four days after each treatment, this meant more output, so more emptying was necessary. A lot of the liquid ended up in the pouch. I also had the convenience of not being able to pass gas through my anus. It was now expelled through my stoma. My gas went directly into the pouch, made it puffy and easy to see through my clothing.
The people that knew I had an ileostomy had several questions, so I thought I'd continue this post with FAQs.
1. What does your stoma look like?
Click here to see. But I would tell people it looks like a baby's circumcised penis. Mine was a little more narrow than what you see in this first picture. It has a small opening at the end, just like a penis, but the opening is to pass stool, not urine.
2. Does the stoma hurt?
Because there are no nerve endings in your intestine, I could not feel anything when it was touched.
3. How do you empty the pouch?
There are many types of pouch systems one can choose from. I'd chosen the one that closes with a very sturdy velcro closing. I'd have to sit on the toilet with the opening of the pouch pointed inside of the bowl. I'd open the pouch and release the contents. Because I am a germaphobe, I always wore medical examination gloves just in case any of the stool accidentally touched my skin. In addition, I had a water bottle that I would use to pour water into the pouch and clean out any stool that was left behind after emptying. I didn't want any lingering smells or stool to touch the skin around the ileostomy opening. When this did happen occasionally it would irritate and burn my skin. I was not told by anyone to clean the pouch after emptying, but as I've said, I'm a germaphobe.
4. What does the stool look like?
The best description I can give is that it looks like a combination of diarrhea and vomit. Since the large intestine pulls the water from your stool and helps it to harden, this never happened in my case. My large intestine was not being used so my stool was very liquidity.
5. Does the stool smell when you empty it?
It has the most pungent scent I've ever smelled. It is indescribable and has its own unique scent. The scent could also be affected by what I ate. Seafood made it worse. No matter how I tried to disguise the scent, it didn't work when I had eaten seafood.
6. How would you empty the pouch in public?
If I knew I was going out, I would place drops of deodorizer inside the pouch. Ostomy companies make a special deodorizer solution for ostomy wearers. Many times it would cover the scent when emptying. However, I had a routine. As I emptied my pouch, I would flush the toilet before the scent had time to escape. I always carried air freshener made for ostomy wearers that would neutralize the scent. I'd spray this in the bathroom stall before I exited.
7. Were you embarrassed to empty the pouch in public?
In the beginning I was, but I had to accept this as a temporary way of life. So I would just tell myself that it was ok because I'd never see these people again anyway. If I was in someone's home, I'd forewarn them about the scent and said that if they were really a friend, they'd understand. After some months, that was the least of my worries.
8. Did the pouch ever open accidentally?
Yes. The first time it opened I was grocery shopping. I had no idea why I had a wet spot on the front of my pants. I went into the bathroom and quickly realized what was going on. I cleaned myself up, exited the bathroom, paid for my groceries and headed home. It was such an experience. It happened a few more times after that. When I was getting close to having my reversal, it would open more frequently. I could not figure out why, but wasn't really concerned because I knew the ending was near. I would always carry an extra set of clothes and pouch supplies in the trunk of my car in case it was really bad.
9. Did having an ileostomy limit you in any way?
It did not limit my physical activity. I was still able to walk around, exercise and sleep. However, I could no longer sleep on my stomach. I purchased a bed wedge to relieve the pressure off my abdominal area and help me to sleep diagonally while laying on my back. Although I wasn't supposed to eat raw fruits and veggies, I knew I needed them to help me heal from the chemotherapy. I purchased a Vitamix and began making smoothies with added protein powder to get body healing nutrients and to help add pounds to my small body. My cousin also purchased a Nutribullet for me so that I could make juices with all the fruit's nutrients. I was determined to get healthy against what the doctor had ordered.
On October 22, 2013 I had my ileostomy reversal. This meant that my stoma would now be placed back inside my body and that part of my life would now be over. I was looking forward to this surgery because I wanted things to be almost back to normal by Thanksgiving. I wanted to be able to eat the foods that my family traditionally prepared at that time of year. The recovery time is 4-8 weeks and now I know why. My colon specialist performed the surgery that Tuesday afternoon. The surgery was supposed to last an hour, but mine lasted two hours because she found scar tissue that had formed and needed to be removed. I was happy to hear afterwards that everything else went well. I was in the hospital for 3 days following my surgery. If you've had abdominal surgery in the past, you'd know that passing gas is a formality before being discharged. I was so excited to pass gas because it had been almost a year since I was able to do it the normal way. I was placed on a liquid diet because the large intestine had to now begin working. It took about two days for this to happen. Once my large intestine began working I was switched to a soft foods diet to see how my system would tolerate solid foods. I did ok with this but had to be switched back and forth from liquid to soft foods because it didn't happen easily. I was in some pain, of course. I had my pain button, which dispensed Diladid, to help me manage the pain. This stuff works GREAT!!! It would put me out after several doses. I tried not to take too much because pain medication can make you constipated and that was just the opposite of what I wanted. I remember one night I was in so much pain and the Diladid was not working. If you are ever in the hospital and crying out in pain, ask for some Toradol. It can't be used continuously, is injected via IV, and it did exactly what I needed it to do. After two doses, 5 hours apart, I felt SO much better. Now I just wanted to go home. Eventually I was discharged, given my instructions and prescriptions, and ready for the next part of the recovery.
Since being home it has not been easy. Remember that one foot of my large intestine has been removed and since I had rectal cancer, a portion of my rectum was also removed. The reconnection was successful in that I did not have to have a permanent ileostomy or colostomy, my sphincter muscles are intact and the cancer was removed, but all of my body's functions are not back to normal. I am adjusting to my new way of living, trying to figure out how my body responds to different foods. The doctor says it may take up to a year before I have a regular and predictable bowel regimen. I'm still not able to eat salads, but I do try every now and then. Eventually my body will be able to handle it. Daily, I take over the counter medications to help control my bowel movements, but it's still hard sometimes, and painful might I add. Sometimes I even wish that I still had my ileostomy. According to the doctor my bowels will never get back to how it was before this experience, I just have to learn how to manage it and make it work for me.
Some things I've learned and still continue to practice:
1. Although I've known this from my nutritional classes: Chew, chew, chew. It helps with digestion and makes it easier on the body.
2. Corn wrecks havoc on the intestines. After seeing that little hole our digested foods travel through, I see why people with intestinal problems are told to stay away from corn, as well as, popcorn.
3. Our bodies are amazing machines. Take care of it and it will take care of you.
4. Our bodies need water. Drink 1/2 your body weight in ounces each day to be sure you are getting enough liquids.
5. Our digestion system works 24 hours a day, 7 days a week, 52 weeks a year.
All in all, I'm happy to still be alive to live out God's purpose for my life.
If you have additional questions, please feel free to post them.
