This past summer has been anything but boring. In May I was hospitalized for my small intestines becoming enlarged and inflamed. I had been experiencing some intestinal pain during a clean out but I didn't think anything about it. Clean outs are crazy and unpredictable. I may be bloated, fatigued, experience flu like symptoms, deal with nausea and vomiting as well as break out in a rash. It just varies per clean out. Abdominal pain is just part of my gastroparesis as well as my cleaning outs. I woke up the morning after a clean out experiencing a lot of abdominal pain as well as nausea. After several hours of not being able to physically get off the couch due to the intense pain and my nausea medications not working, I knew something was wrong. My clean out had literally stopped and that wasn't suppose to happen. I went to the emergency room thinking that I had an intestinal blockage. Compared to all of the surgeries that I have had in the past and their pain, this hurt the worst. As I was registering and making sure my insurance was correct, I just about collapsed. It was a horrible feeling. Luckily they had assessed my case while checking in and I would be one of the first patients called back as soon as a bed opened up. After the CT scan was read, a surgeon came by and confirmed that it was a blockage. I would need to be admitted and have an NG tube placed in my nose to possibly clear the blockage. If not, surgery would be the next option. I of course was so sick and miserable, I did not connect the dots. I didn't realize that if the blockage did not clear, I would have to deal with another intestinal surgery and the recovery process. I was only concerned about having that NG tube placed. The next morning my surgeon who performed my colectomy and ileostomy came by. He explained to me that to someone who didn't know my medical case, it would appear that I had an intestinal blockage but however I didn't. My gastroparesis had made my intestines become enlarged and inflamed. This was just another thing that I would have to learn to deal with. He explained to me what symptoms to look for so I would know when my intestines started to become inflamed again. Lucky for me that he was at the hospital when this happened. If not, I would have been having surgery for an intestinal blockage. I stayed in the hospital for five days and came home weighing eighty-one pounds. All the weight that I had gained since my ileostomy surgery was gone.
I came home pretty shaken up. How in the world was I suppose to plan or do anything with the possibility of something like this happening again? I didn't want to live in the hospital because you can't physically live outside of the hospital in that kind of condition. It wasn't possible. I was just getting comfortable with my ileostomy and the inflammation sent all of that out the window. My stoma size changed so it was like starting all over again.
In late May, Jacob kept asking me when we were going to go hiking. Before my GP diagnosis and advancement, Jacob and I use to hike a lot and do a lot of outdoor things. For the longest time, we had been talking about taking a hike. It was kind of a goal and reward to get me through the ileostomy surgery. My personal goal was to be able to be strong enough to hike for a little while. I didn't care about the distance or location, I just wanted to be able to be back out in nature for a little while. I was just wanting to be able to hike once. Since I knew deep down that the ileostomy surgery was just a break from cleaning out, I knew that I had limited time. It wasn't until after surgery that I realized how bad of shape that I truly was in from the magnesium citrate clean outs, malnourishment and gastroparesis. I wanted to hike just once. Can you tell I was determined? We finally went hiking one day on one my favorite trails. It was wonderful! We took our time and took a break at the top. We just sat there for a while talking and just enjoying the view. Jacob asked me if I wanted a gift. Our anniversary was coming up so I just attributed it to an early gift. It was concert tickets to The Piano Guys, one of our favorite musical groups. I was so excited! I had been asking to see them in concert. He asked me if I wanted another gift and told me to close my eyes just as before. When I opened my eyes, he held in his hand a ring asking me to marry him. It was perfect, a complete surprise. I never saw it coming.
We decided to have a quick engagement and get married in August. I wanted to go on a honeymoon and not have to clean out multiple times, maybe not even have to clean out at all if I was careful. Whenever I started cleaning out years ago, I realized that our wedding would not be "normal". My GP and cleaning out would effect our plans. Our rehearsal dinner would most likely fall on day two of me doing a back to back clean out. I would most likely be exhausted from that forget all of the additional wedding stresses. When it came to our wedding, I wouldn't be able to enjoy the cake. I know that is vain and childish but cake is one of my favorite foods and I have had to learn to give that up. For as long as I can remember I have been "planning" what type cake I wanted at my wedding. I am a girl after all who likes to plan. Finally, there was the honeymoon aspect. I knew about a month after my ileostomy surgery that the surgery wasn't successful when I had to start cleaning out again. I knew I was on borrowed time before I would have to start cleaning out with larger amounts of laxatives and combinations of colonoscopy preps such as magnesium citrate. I didn't want to go on a honeymoon with my husband where I had to clean out several times that week and feel miserable and weak from it. It wasn't fair to him. He had been there through thick and thin with me and he deserved as much of a "normal" honeymoon as possible.
As we began planning our wedding, I noticed that my clean outs were not being as effective sometimes barely working. At the rate, I would be drinking the magnesium citrate before the wedding. I needed help. I didn't want to completely max myself out again on the milk of magnesia and dulcolax. I met with my GI and discussed my options. He agreeded that something needed to be done to slow things down and buy time. He prescribed a new medication that I would take daily to help with the clean outs. He also scheduled another EGG and gastric emptying scan to see how my gastroparesis has effected my stomach. I showed him this 'dent' or hole that had formed since my ileostomy surgery. He referred me to my surgeon thinking that it might be where my abdominal wall muscles have separated. I met with my surgeon later that month showing him the hole. It is right above my belly button. It is four fingers tips long and three finger tips across. He accessed the site and claimed that it was just abnormal surgical scarring. I have had four surgeries at that one site which have caused some abnormal scar tissue. There was nothing he could do, it wasn't harmful just odd looking.
I knew with the wedding approaching fast and my clean outs not working like they should that for me to physically pull of the wedding as the bride, it was going to be a miracle. I honestly had no clue as to how I was going to do it. I did a trial run of two back to back clean outs to see how it would work and how I would feel after it on the weekend of one of our wedding showers at Jacob's church. It wasn't good timing but I was running out of time. I woke up on the last day, the day of the shower hardly able move from being so weak. I felt like I did before my ileostomy. My parents were trying to motivate me to drink something but I was so nauseous. I knew if I wasn't careful, it wasn't going to stay down. At one point, I honestly didn't think I was physically going to be able to go to the shower. However my mom was great and helped me get ready and got me there. I really didn't want to leave Jacob there by himself but he would have been fine. He knew what was going on. At the shower, I felt so rude not hardly talking to anyone but I was doing all I could to just sit in the chair. I did get up once and walked across the room to speak to someone and I felt it coming. I started sweating, my hearing started going as well as my vision. I knew I was going to pass out if I didn't sit down. That was all I needed - "Bride passes out at her shower!" When we left and went home, it wasn't long before I was vomiting. My parents were convinced that I needed to go to the emergency room. I however as usual had to be stubborn and refuse. If this was how two back to back clean outs went for me with an ostomy, is this how my wedding was going to go?
Jacob and I had went back on forth on whether to elope or not. We had thought about eloping somewhere and having our parents go with us so they could be at the ceremony. However we both wanted our siblings to be there so we decided to have a small intimate ceremony at his parents' home. It worked out just right. Our siblings (along with my god sisters who are basically my sisters) and my best friend Melissa were in the wedding. The wedding was on August 10th. Melissa flew in a couple of days before and helped keep me grounded. I honestly don't know what I would have done without her. She gets and understands GP. At one point during the rehearsal, we were going over the order of the ceremony. At that point, I did not care anymore about details, order or anything that had to do with the wedding. My clean outs had caught up with me. It was all I could do to not vomit all over the walk way during the ceremony. I felt so bad, I forgot how many grandparents I had. Isn't that horrible?! However Melissa just stepped right in whenever and just filled in. I just love her for that. She will never know how much I appreciate her for that.
The wedding was beautiful yet quick. We didn't have a long ceremony. It was short and simple. Our rehearsal was the same. Things like that don't matter in the long run, it is the marriage not the wedding and the reception. We did however have cheesecake and I took a couple of bites. We went to North Myrtle Beach for our honeymoon, somewhere close. We didn't want to waste a day of me not having to clean out flying or traveling. We enjoyed our time in North Myrtle. It was the first time that I had been in water with an ostomy. Jacob's parents' have a pool but I hadn't had a chance to swim. It wasn't bad wearing my ostomy, it was just awkward. I made sure I wore my swim wrap under my bathing suit to keep it close to my body. I was in the pool once and almost got kicked in my stoma by accident. It almost made me sick just at the thought of what could have happened. It wasn't their fault and they didn't know. It just made me more aware while being in the water.
It wasn't long after coming back home that I started cleaning out with a combination of magnesium citrate, dulcolax and milk of magnesia. Jacob and I have discussed the pros and cons of cleaning out this way. The dulcolax and milk of magnesia alone are simply not enough anymore. I had even double the prescription that my GI doctor gave me and take it daily along with these laxatives and preps. My GI tract's motility is simply slowing down and I am okay with that. I realize that eventually I may end up maxing myself out with these medications before my ileostomy surgery but I will cross that bridge when I get there. I am currently talking back and forth with my GI about several other tests that need to be done so it is one thing at a time. I am content and happy with my life. I never thought that I would find that by cleaning out twice a week again after my ileostomy surgery but God gives me what I need to get through the day to day stuff.
Jennifer, Congratulations!!! You have really been on my mind, I've checked here on your blog a couple of times to see what you have been doing, but you haven't been writing so I was a little worried. As you can see it is 4:00 a.m. I've been up doing my clean out! Yep, twice a week like always. Hate it, like being sick everyday isn't enough, lets do clean outs on top of it!!ReplyDelete
Your pictures are beautiful. I'm glad your day went fine for you. I'd love to talk one day, I don't think you live that far from me. I live right on the N.C. boarder. Would you have your surgery again if you could do it over, since you have to do clean outs anyway? Who did your surgery?
Well enough for this morning, hope you still have my email. Or facebook me.
Happy Honeymooning to you and your Hubby! Jeannie Wager
Thank you so much! I was thinking about you recently wondering how you were doing? Are you still doing the same type of clean outs? Yes! We should get together sometime. I would love to meet up with you. I had my surgery at Wake Forest University Baptist Medical Center. I LOVE that hospital. I just feel at home there. That is a very good question, one that I have thought about countless times. I would do it all over again. It was a high price to pay for a break from cleaning out, but it nice.
P.S. I don't think I have your email anymore. :(