Types of ostomies...

For several years now, I have wanted to write about the various types of ostomies. There seems to be a lot of confusion and misconceptions out there regarding ostomies. Generally speaking, there are three types of ostomies.

Colostomy: A colostomy is where the colon is surgically diverted through the wall of the abdomen to create a stoma.

Ileostomy: An ileostomy is where the ileum, which is the lowest part of the small intestines, is surgically diverted through the wall of the abdomen to create a stoma.

Urostomy: A urostomy is where a stoma is created to help divert the drainage of the bladder and urethra.

There are different "subcategories" within the realm of ostomies such as J-pouches but today we are just talking about generalized ostomies. The reasons as to why a patient may need an ostomy vary. A patient may have a blockage or obstruction, cancer, GI conditions such as Crohn's, Diverticulitis and Irritable Bowel Disease (IBD), infection, an injury that resulted in the need for an ostomy or motility issues. The reasons are vast. Some ostomies are temporary while others are permanent. It just depends on the patient and the medical situation.

Looking back...

As human beings, when we mature and grow older, our outlook and perspectives change. Next month is my thirtieth birthday. As I look back over my twenties, I can see how I have grown and changed as a person. If someone would have told me what my twenties would entail, I would have never believed them and possibly questioned their sanity. This time of year always make me reflect on what I have been through with my gastroparesis. I am so thankful to be where I am today in life.

Years ago when I was in the process of preparing to have my colon removed, it took about six months for everything to fall into place. I had to have further GI testing, additional GI consults and opinions and a procedure done to rule out the diagnosis of Hirschsprung's Disease. During one of my GI appointments at Temple University Hospital in Philadelphia, I was seeing one of the nation's best GI doctors who specialized in motility disorders just like my local GI doctor. I remember conveying my wishes to him to have my colon removed and asking his opinion on the surgery. I explained to him that my local GI doctor recommended the surgery. Without the surgery, he didn't expect me to live to see my thirtieth birthday. Shockingly this GI doctor disagreed. He thought that the surgery was too big of a risk. The outcome would not justify the risk. I remember thinking that yes, medically he is qualified to tell me his opinion. He had devoted his life to medicine and studying how this disease "works" but he didn't know on a personal level what it was like to live with my disease every day. I wanted to live a long and full life.

Fast forward a couple of years and I was in the same situation again, needing an additional surgery to save my life, an ileostomy surgery. The day I met with my surgeon is a day that will I remember for the rest of my life. Originally I had went to my surgeon that day to see if he would remove the remaining eight inches of my colon that was a left as a hookup for my small intestines. He explained that by removing the remaining colon, he would be putting me at risk for obstructions and the possibility of my intestines "falling" which would cause a whole list of complications that could not be fixed. An ileostomy was my only surgical option at this point. My GI tract was delayed from the gastroparesis. There was no guarantee that an ileostomy would work. If this surgery failed then my GI tract would be considered to be "in failure" and a transplant would be my last option. The cleaning out regimes eventually would stop working. Transplants are not a fix all, end all solution. They come with their own set of complications.

After leaving that appointment, I realized how short life could really be. Things that I had wanted for years to have and be in life may not actually be possible or happen. The following few weeks were really hard for me. People my age were out pursuing their careers, getting married and having babies. I was at home cleaning out and picking out ostomy supplies. I honestly didn't think I'd ever get to be a parent.

As with all things, time does wonders to one's perspective. Over next few years, I grew as a person. I accepted my new "normal" and way of life. I grew to like and even appreciate my ileostomy. It had saved my life. The night before my ileostomy surgery, my body began shutting down. It was horrible. I have never been or felt so sick in my life nor wish to do so again. My parents explained to me later that their prayer was that I survived the night. Now as a parent myself, I can't imagine how hard that must have been on my parents to see their child in such a state. I can't imagine how hard it was for Jacob, my husband. I never would have imagined that four years post ileostomy, I would be married and have a nineteen month old daughter. My gastroparesis is still "there" and it still affects my daily life, nothing has changed. I still have to do my clean out regimes and watch what I eat. I am so thankful and appreciative to be here living the life that I do.

breastfeeding and gastroparesis...

I haven't talked much about my pregnancy and how my gastroparesis was affected. In this post, I want to focus on one aspect of motherhood, breastfeeding or nursing (whichever you may call it). Whenever we found out that we were expecting, I knew from the beginning that I wanted to nurse my baby. There wasn't much information out there pertaining to nursing a baby while having gastroparesis. I thought that I would share my experience and thoughts. However please keep in mind that I am not a medical professional and everyone is different. What works for me may not work for you. You have to decide what works best for you and your family.

Whenever I gave birth to our daughter, my medicine was still limited from the pregnancy. I had stopped taking my migraine preventative, muscle relaxers for when I had a migraine as well as some of my nausea medications. My doctors explained that as long as I nursed my baby, I could not take those medications because my daughter may be susceptible to receive some of the medication through her milk or simply because there wasn't enough medical research.

We had a lactation consultant come to our hospital room for several visits to make sure that our daugther was getting enough milk at each feeding. She was having trouble with her latch so for the first couple of days, she had to be feed with a spoon. The lactation consult recommended that I use a shield to help her figure out her latch. They also reminded me that I needed to remain relaxed. The baby could sense if I was stressing out or tensing up while nursing.

After we came home from the hospital, our daughter would nurse every hour and a half to two hours. We both became more knowledgeable and experienced with nursing so our feedings went smoother. The key for me was to relax. If I remained calm, she had no trouble feeding.

During those first few months, I had enough supply to pump off the remaining milk and supplement her during feeding times with a bottle if we were away from home. As she grew, she started nursing for longer periods so I noticed that I wasn't having as much extra milk. Something that the lactation consultant and pediatrician remind me of was to drink a glass of water every time I nursed. I knew then that this would be where I would have trouble. With my gastroparesis, I have trouble holding and digesting my liquids. It sounds odd, I know. Since I simply couldn't sit down and drink a glass of water, I started sipping and drinking all throughout the day. Some days, I would have less milk than normal which posed a problem at night. There were a few nights where I actually ran out of milk and had a very upset baby. We tried supplementing her with formula on those nights but she did not like it. I tried drinking a tea that was suppose to help with increasing the amount of milk but I never noticed a difference. It just tasted bad. Over time, I finally figured out a plan that worked for me as well as our baby. The day before I would clean out, I would drink Gatorade to help give my body some extra hydration. On the days when I would clean out, I had to constantly be sipping on something. I also had to monitor my output to make sure that I wasn't loosing too much fluid from my medications.

Whenever you nurse a baby, it takes calories. Some nursing mothers lose weight while others maintain their weight. I was unable to eat multiple meals and snacks throughout the day because it would stop my medications from working. Dinner was usually my only meal for the day. At night I learned that if I would snack on something throughout the evening, I could sneak in some extra calories to make up for the nursing. I would go to bed feeling bloated and full but I would sleep through the majority of those feelings.

During my pregnancy, I was extremely blessed to have benefited from those prolactin hormones. It really helped curb my nausea and make it manageable and easier to deal with. Since I was able to nurse my baby, I would still have those hormones which would help with my nausea. My daughter is almost fifteen months old and she still nurses up to three times a day. I have noticed that my nausea isn't as controlled as it once was when I was pregnant and first nursing but it isn't full blown.

Over the months, I have grown to love our feeding times together. It helped establish a bond between the two of us. As with any medical decision, it should be discussed with your doctor. Nursing is a personal choice.