Sunday, March 17, 2013


The past week has probably been one of the hardest weeks for me since my diagnosis. Emotionally I was everywhere. One day I was okay with the idea of having an ileostomy and the next day I was consumed by doubt, frustration and tears. It hasn't been the easiest week at my house.

Whenever I had my colectomy, I had a peace about it. This past week however, not so much. I understand the medical concepts that I had been told and I completely trust my surgeon; the surgical process does not bother me. The idea of having an ileostomy and having to accept where I am in my disease really bothered me. It had crossed my mind numerous times to just put the surgery off and keep cleaning out until I am comfortable with the idea of an ileostomy. (It would most likely never happen. I would never be perfectly comfortable. I am the type when it comes to a band-aid, just rip it off.)

I met with my surgeon Thursday to simply talk about having an ileostomy. I had had a week to think about it and I had a ton of questions. Thankfully as I started asking my questions, I started feeling more comfortable about the idea of having an ileostomy. Don't get me wrong, I am not excited to be wearing a bag on my side but I am learning to except the changes and take it one day at a time.

My surgeon explained that my ileostomy would be reversible. In six months to a year if I wanted it to be reversed due to cleaning out or simply because I did not like it, he would reverse it. He did explain that if I was cleaning out again within that time frame, it would only prove that I would be in GI tract failure. He would refer me to a transplant doctor. I have talked to my GI doctor about this possibility. It is a enormous medical feat, something that requires vast amounts of drug therapy. Thankfully today I am not there and I do not have to make those decisions. As for the ileostomy surgery, it would be somewhat comparable to my colectomy since I have GP. He wasn't able to say for sure that I would get an ileus after surgery because everyone is different. I ask him about nutrition and my history of weight loss after surgery. Normally when an ileostomy is placed, you do not lose weight. Unless my bloodwork comes back with low protein levels, I will not have to have TPN (thank goodness)!

Sometimes when an ileostomy is placed and when the small intestine is cut, some of the the lower small intestine is disconnected and left attached to the colon. The patient will lose some of their ability to absorb the normal amount of nutrition that you would if you had a fully connected small intestine. Case in point, my small intestine is connected to my eight inches of remaining colon. My surgeon is going to make an incision like my colectomy incision and go into my pelvis and disconnect my hookup. He will staple my colon shut and bring my small intestine up and create an ostomy. I am already lacking in nutrition due to my GP. I need all the help that I can get.

Like with my colectomy, we aren't sure if this surgery will work. Most people who get ileostomies, can't stop going to the bathroom. I on the other hand can't start going. They aren't sure how my motility will play into this. I will have to learn how long it takes for food and liquids to travel my tract and go into the bag. The slower I empty, the smaller a bag I can have.

I met with a nurse who only deals only with ostomies. She was extremely nice and informative. She showed me different types of ileostomy bags. I honestly didn't know there were so many different styles and types. She gave me some really good resources. She went ahead and marked me for surgery. (The redness in the picture is from the rash I get when I clean out. This was the morning after the rash went away. The rash will leave an imprint.) The best part is that during my hospitalization,she will be there to help me as I learn how to do this myself. It is one thing to see it, it is another thing to actually do it.

My surgery is April 8th. I was told that I should be in the hospital five to seven days but with my GP maybe more. They are going to give me a different type of pain medication besides morphine. I do not do well with morphine. After talking to both my surgeon and the ostomy nurse, I felt much better about having an ileostomy. I am not excited about having to wear a bag but it is what I need to do and I am going to make the best of it. I just need to take it one day at a time and remember that it is not permanent.

Friday, March 8, 2013

Time For A Detour...

I remember the day that I got my tests results back saying that I had gastroparesis. The nurse was extremely nice and informative. I was just happy to have a diagnosis, an explanation as to why I had been so sick. She explained to me that there was no cure for gastroparesis but with medication, the symptoms could be manageable. It was just a game of trial and error trying to find out what works best for you. At the time I was working as a licensed pharmacy technician. I knew that medication didn't always work for everyone. People are unique individuals, what might make one person have better control of their symptoms might make another person feel miserable with allergic reactions. I asked her what happened when you had went through the list of medications and none of them had helped. She told me that patients with severe cases of GP when medication had failed could/would receive a gastric pacemaker. It seemed so foreign and unreal, a pacemaker for your stomach. There was a long list of medication, I was only allergic to one, I would never need a gastric pacemaker.

It is a good thing that as people, we do not know the future. If you would have told me that within the next five years I would go through having my stomach, small intestines, colon and bladder effected by my gastroparesis. I would have to go through numerous medical testing, some being less pleasant than others. I would consume what seemed to be boatloads of laxatives and hundreds of bottles of magnesium citrate. I would have to learn how to catheterize myself and eventually have a colectomy. If someone would have told me this, I would have laughed and questioned their sanity. At the time of my diagnosis, I wasn't a strong, determined person. I have grown and learned so much from having gastroparesis that I am not sure that I would change it if I could. I wouldn't be the person that I am today. My disease has taught me to strengthen my faith. It has taught me to be a stronger, independent person, someone who doesn't give up when things get hard. I have learned to have more compassion towards others. I am still working on coming out of my shell and holding my own when the circumstance calls for it but we are all a work in progress, continually growing and learning.

In February I went for my second endoscopy to have my pylorus stretched and receive additional Botox injections. I had been talking to Jacob for a while about the idea of having the remaining part of my colon removed. Jacob like always, was supportive of my decision to talk to my GI. Jacob will never know how thankful I am to him in my life and how much I love him. He has been through all of it with me. He is the ultimate trooper if there is such a thing. From when I needed a Coke from the refrigerator to help deal with nausea, to the numerous doctor appointments and testing, and finally when I have been so sick in the hospital that every time I moved, I vomited. Jacob has been there through thick and thin. He has always been there supporting me.

I talked to my GI and asked him if it would be crazy to even entertain the idea of having my colon removed. He talked to me and told me no. This was the next step. He explained the possible surgical options I may have. He sent the referral to my surgeon, the one who did my colectomy and I met with him yesterday.

I was talking to one of the doctors yesterday explaining the past fifteen months. When I got to my clean out regime, he was shocked at how much I take and how often I take it. He said a bottle of magnesium citrate to the small intestines was like taking an elephant gun to a mouse. I am doing that with the additional twenty tablespoons of milk of magnesia and twenty Dulcolax pills every other day. We also talked about the twenty pounds that I had lost since I last saw them.

My surgeon talked about removing my colon. He explained that if he removed my colon and put in a pouch, I could be headed towards some major complications. The pouch could become attached to the surrounding organs and veins. It would not be good and he did not recommend the surgery. His next option was doing an ileostomy. I explained to him that I did not want an ileostomy. What happened if my small intestines slowed down like my colon? Could I even clean out with a bag on my side? He told me that it was rare to see a patient with small bowel motility issues. Here I am with my stomach, small bowel/intestines and colon (for whatever is left of my colon) effected by motility issues and that doesn't include the pelvic floor issues. I am rare and in uncharted waters. There is no guarantee that the surgery will work or that I won't have to clean out again. The ileostomy would be reversible which gave me some comfort. I could go back to how I am now if I needed too. He set up an appointment with the nurses who teach ileostomy care. He felt it would help get me more comfortable to see how things work. I was currently suffering from a case of being close minded, stubborn and simply ignorant. He told me that I didn't have to make my decision today.

I had to ask what would happen if I stayed just like I am today, a girl taking a boatload of laxatives and magnesium citrate. He explained to me that I could stay just like I am cleaning out. I voiced my concern about how long the medication would last since I am already maxed out and can't go up in my dosages. Eventually I will have to increase it or the medicine will stop working. Physically, I can't handle much more when it comes to laxatives and cleaning out. This high of dosage is beating me. I look and feel horrible. My surgeon explained that if I continue to clean out, my medication will eventually stop working. I will start having obstructions/blockages in my small intestines which will make me vomit. I won't be able to clear the blockages because my clean out routine will no longer work. I will become more malnourished and eventually my organs will begin to shut down. I am coming to the end of a cliff and I need to take a detour. The last option was looking into the possibility of a small bowel transplant. He didn't know the criteria but it was something to look into. By this point in the appointment, my head was spinning. How did I get here this quickly? I knew that I have felt weaker and looked worse than I had in the past but I was not expecting this. I just wanted my colon removed. No bag. No transplant talk.

I was pretty taken by the appointment yesterday. I have done a lot of thinking about my future over the past couple of years. I knew that one day I would have to make those crucial life changing decisions. I just didn't think it would be now. I am currently in the process of talking to my GI about the possibility of a transplant. I don't even know if I would meet the criteria. I have decided to go ahead with the ileostomy surgery. I need a break from cleaning out. It doesn't have to be permanent. I just have to take it one day at a time. God has been with me through everything and He will be with me through this.

My health may fail and my spirit grow weak, but God remains the strength of my heart; He is mine forever.   Psalm 73:26