an important life lesson...

It is hard to believe that the end of the year is here. Honestly, where does time go? This upcoming May, it will be eight years since my diagnosis of gastroparesis. Looking back, I never thought that I would go through and experience the things that I have experienced over the past eight years. I feel that my experiences have made me grow as a person. Several years ago when I was really struggling with my gastroparesis, I often wondered what would happen to me as a person based on what the doctors told me. I never imagined that I would be at peace with my health condition, be happily married and be a mom.

On Christmas Eve, our daughter will be four months old. It simply blows my mind. She has been such a blessing to us. Motherhood is amazing. Over the years, I had doubted and worried what life would be like if we were to have children. Would I be able to physically do it? What kind of life would we/I be able to give our child because of my disease?

Several weeks ago, I noticed that my GP was acting up. I began experiencing stomach spasms. Almost immediately, I knew that it was time for another round of Botox. I had always wondered what would my child think about seeing me in the hospital. Would it bother them? Would it effect our relationship? What would they think? I went last week to have the Botox administered into my stomach. As I was being taken back into the procedure room, I thought about how my disease was taking me away from my family. Instead of spending time at home making memories, we were at the hospital. I have always feared that I would miss out on some of our child's life because of my disease. Whenever I woke up, I was greeted by my husband and daughter. After I woke up and got my bearings, I asked to hold our daughter. I was a mess physically, but I learned a really important lesson. Regardless to how I feel or look, whether I'm at home or in the hospital, I will be my child's mother. My disease does not affect or change that.

My Pregnancy with GP...

I honestly do not know where or how to begin this blog. It has been so long since I last posted anything. This year has been an amazing as well as an eventful year for my family. My husband and I celebrated our second year of marriage and as well as had a baby. We truly have been blessed this year.

Over the years, medically I had heard it all when it came to the possibility of me having children biologically. Adoption has always been close to my heart so over time, the idea of not being able to conceive bothered me less and less. Around Thanksgiving, I noticed that my gastroparesis was either changing or I had just entered probably one of the worst flare-ups in my life. As always with any flare up, it just takes time and eventually, you'll get through it. By Christmas, I hadn't noticed any changes in my GP, the flare-up was not getting better. I had gone to my GI and had another endoscopy with Botox to see if that would help. I remember countless mornings even days where the only thing that would stay comfortably on my stomach was salt and vinegar potato chips with salt sprinkled on them. By the end of December, things weren't adding up or making sense. Out of the blue one day, I decided to take a pregnancy test. I was pretty sure that the test would come back negative after all of the "medical opinions" that I had heard. On New Year's Day, we found out that we were pregnant.

Over the next few weeks, we met with my doctors to establish a care plan. We didn't announce our pregnancy for quite some time just in case the worst happened. Slowly towards the end of the first trimester, I noticed that my GP was changing for the better. Days of laying around on the couch feeling nauseous, tired and weak were coming to an end. I spoke with my GI about the changes that I was experiencing and he simply said that people with GP can either feel horrible during a pregnancy and some thrive. It all had to do with the pregnancy hormones and no, they could not mass produce those hormones for the GP patient.

At first, it seemed like time was dragging by but the further along we got in the pregnancy, the quicker time passed. At one of our OBGYN appointments towards the end of our pregnancy, the doctor explained that due to my GI conditions and issues which classified the pregnancy as high risk, we could expect to go into labor early. I had always figured that I would either have our baby too early or I'd go over the forty weeks.

I woke up Friday morning, August 21st with some pretty significant abdominal pain. As the morning progressed into the afternoon, the pain began to subside. I decided it had to be something that I had eaten or my body just hurt due to being right at 38 weeks pregnant. It was a cramped area and the baby was simply running out of room. Later that afternoon, I decided to change my ostomy wafer and bag due to the abdominal pain returning and there it was. I had a bulge under and beside my stoma that was visible. This had to be the culprit. We decided to call my OB to see what needed to be done. They advised us to go to the hospital where we would give birth at verses the hospital where my GI and surgeon were located. At the hospital that evening, they discovered that I was having contractions every three to five minutes (I had always wondered how to tell the difference between GP pain and contractions) and also being one centimeter dilated. They were unsure as to if the pain was coming from the contractions or if the pain was associated with an intestinal blockage. Being right at 38 weeks, they didn't feel comfortable doing a CT scan nor administering any pain medications due to the possibility of making my GI tract slower. They released us to go home late Friday night. Needless to say, it was a really rough night and we were back at the hospital the following morning. Jacob had spoken with the surgeon who was more than happy to see me at my usual hospital but if I was in labor, they might not be able to get me to the hospital where I was supposed to give birth and we could be separated. The baby would go to one hospital and I'd stay at another. Luckily my surgeon spoke with the OB department at the hospital where we planned on giving birth and everything was resolved. They would be waiting for us. My husband was amazing at orchestrating all of the phone calls between doctors and hospitals. I honestly could not have done it without him. By the time we had arrived at the hospital, I had began vomiting so I knew that there was a blockage somewhere. After being assessed seeing no further dilation, they admitted me to the hospital. After what seemed like forever, I was finally given some pain medication and something for nausea.

Sometime during the day Sunday, the OB, GI and surgical teams decided that an induction was possible. I had expressed concerns that I didn't want to put any additional stress on the baby, continue to feel like this for up to two more weeks as well as face a possible intestinal surgery on top of giving birth. Due to the size of the baby, my uterus growing and not knowing exactly where my intestines were due to the colectomy and ileostomy, it was possible that the uterus had blocked off my intestines. They explained that since this was my first child as well as GI issues, it would probably be a long labor. We should expect to have our baby late Monday afternoon or evening.

I woke up Monday morning feeling different. I had refused an NG tube, a tube that was placed up my nose and into my stomach so the vomiting had increased. NG tubes are horrible. After being checked, we were informed that I had dilated to six centimeters. The labor was moving quicker than expected. Everything happened so fast and I was exhausted from the events of the weekend, it all began to blur together and I don't remember everything. On Monday, August 24th at 11:41 am, our daughter Chaselyn was born. I do remember seeing her briefly before they took her to the NICU for observation. When she was born, she was having trouble with her breathing. When Jacob and I got to see her in the NICU, it was such a surreal yet terrifying moment. The doctors assured us that she would be fine. She was on the smaller side weighing six pounds twelve ounces. Later that day, they moved Chaselyn from the NICU to our room where she stayed with us until we went home on Wednesday afternoon. Since delivering her, the abdominal pain had decreased and things began to work properly again. Today my GI tract is still "off" and not back to normal but it is so much better than what it had been.

Chaselyn has been such a blessing and joy to our lives. She is a wonderful baby. We knew not long after we found out that we were pregnant with her, that her immune system could be compromised like mine. Until we know exactly how her immune system is, it is recommended as well as asked that we have no visitors. We want the best for Chaselyn and her health. After she is two months old, we will reassess where she is at physically. In the meantime, it will give us time to deepen our bond with Chaselyn as well as get back to a new normal. We appreciate everyone's encouragement, kind words, and prayers. They truly mean a lot to us!

recent appointments...

It is absolutely crazy to think that it has been three years since my colectomy. In a sense, it seems like it was yesterday then in another sense it seems much longer; so much happened since then. Thinking back to how I was functioning and living then compared to now, it just makes me appreciate and see things differently.

My appointment with my GI doctor went well. As usual, we discussed my clean out routine. I expressed how I am burnt out from doing so many clean outs. Forget the fact that I have drank over five hundred bottles of magnesium citrate, my body is just tired from doing it. However my GP can't just take a break so we adjusted and tweaked some of my medications in order to hopefully help things. We also discussed my pulse rates. After a clean out, it is normal for me to see my pulse rate anywhere between 140 to as high as 152. Needless to say, I don't feel the best when it's that high but I just deal with it. Anything between 90 - 125 is normal for me, I don't think a thing of it and just keep going. My GI doctor commented that a pulse rate of 152 was getting pretty high. My clean outs are causing me to become dehydrated which are resulting in a higher pulse rate. When you also add to the issue that I had an ostomy (people with ostomies tend to be dehydrated more due to having an ostomy), it's just stacking issues on top of each other. He recommended increasing my fluid intake on the days when I clean out. Normally I'd have no issue with that because it makes perfect sense. However when I clean out, the more that goes in, the more that has to come out which results in making me even weaker. If I have a really good clean out, I have to stop taking in fluids sometime that evening or night depending on how things are going because there is a pretty good chance that I will pass out during the night when I wake up. There is nothing worse than getting to the bathroom and not being able to make it back.

Overall I was content with my GI appointment. He wasn't thrilled with my weight. He explained that weight gain would be hard for me as long I has I had to clean out. Since the beginning of all of this, I have lost around thirty-five pounds. I have an appointment to see him again in November to follow up and see how things are progressing.

In September I met with my surgeon. I had went back and forth with the idea of whether to see him or not. We had spoken over the phone several times and I finally made the call and set up an appointment. Last fall, I had started experiencing some spasming in my remaining eight inches of colon that I no longer use. Since then the spasming had worsened causing me to become experience a lot of pain, nausea almost to the point of passing out when it would take place. Some days I would have multiple spasms and then I would go several days without. It was always sporadic.

I met with my surgeon and explained how bad the situation had become. I explained that I was interested in having him remove the rest of my colon in an attempt to stop the pain and spasming that I had been enduring. It wasn't like I was using or going to use that organ again anyway. He explain to me that a surgery such as that, one where the colon and rectum are removed would be fairly difficult, more than the colectomy I had. The downfall would be that I don't have a colon, just a small intestines with motility issues. There would be a hole in my body where my colon and rectum were and should be. Because those organs aren't there, my small intestines could literally fall into this hole, kink and form obstructions (compliments to my motility issues). This in itself would be something to add on top of my GP. If and when it happened, it would be bad.

He also commented on my motility issues as a whole. Considering where my motility issues are currently and the amount of medication it takes, were the surgeries even beneficial? I quickly corrected him. Yes! They have given me time. So I still have to clean out but when you look at the big picture, who truly cares?! I'm alive and happy and that is what matters. I explained to him that with the colectomy, I have been able to sleep about three more hours during my clean out than I use to be able too. The surgery in itself was worth it for that because I was exhausted from not sleeping. As for my ileostomy, I love it most days and plan on keeping it. He doesn't need to doubt doing the surgeries, I'm more than happy with them even though they considered them as failed surgeries.

I have some decisions to make regarding a port for hydration as well as what to do about surgery. Is it something I want to deal with and just push through or do I want to "risk" my chances at getting an obstruction or kink? With motility issues, it's something you have a chance of dealing with anyway.