Before I tell my story I have a couple disclaimers.
1. I choose to share my experience so that it would maybe help others who might be experiencing difficult times. I am in no way looking for anyone's pity.
2. This is pretty detailed and long but I really do want to remember every part of this journey as it strengthened my testimony leaps and bounds and was a huge learning experience.
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| This is one of many things I learned through this experience. Faith isn't something we believe, it's something we live!!! |
As June approached I was really excited for summertime and all of the exciting activities and trips we had planned. With the pregnancy I had been feeling pretty good and was finally in the second trimester, so my energy was slowly creeping back up. On Friday, June 5th, I was suddenly awoke about 6am and was in an immense amount of abdominal pain. I knew immediately that the pain was related to my Crohns Disease and not to the baby. I felt strongly at that time that no matter what happened, our baby was going to be okay and that I shouldn't worry (This turned out to be a huge tender mercy). The pain was so bad I was buckled over and yelling for Kevin to wake up because something was wrong. I knew I was having an attack, or what is called a flare, when you have Crohns. It was the same pain I felt during my flare in 2014. Kevin helped me try and relax and after about 20 minutes the pain calmed down enough that I could lay down. Within ten minutes I had another attack of pain, worse this time, and told Kevin I couldn't take this and to get me to the ER right away. I needed help!
Thank goodness we live a few minutes from the ER. I could barely walk because of the intense pain. It was so awful. He wheeled me in the emergency room waiting area and as soon as I said I had Crohns disease, was having a flare, and was 15 weeks pregnant they started rushing around and quickly got me back to a room. Looking back I felt bad because I was rude to the ER nurse but I kept demanding pain meds and they wouldn't give me any. The doctor came in right away and questioned me but the pain was so intense I could hardly lay there and speak. Finally they got some morphine in me and about 30 minutes later another dose, which finally calmed me down enough that I could relax. The on call OB from my doctor's office and on call GI from my doctor's office was contacted and the OB doctor visited right away. He wanted an ultrasound to check on the baby because they couldn't find the heartbeat with their fetal monitors. That wasn't abnormal for me however and so I wasn't concerned at that point. The GI doctor admitted me for pain control because the morphine wasn't strong enough, but he had other patients that were more pressing and said he'd come upstairs to check in. On a scale of 1-10 I was reporting my pain at a 9 or 10 and after 2 doses of morphine it was still at an 8. The pain was almost unbearable and the worst I've ever experienced, or so I thought.
The ER doctor performed an ultrasound and the baby was moving around and had a good heart rate, which made everyone feel a lot better. At that point we started making some phone calls, knowing I was going to be sticking around for awhile. I had Kevin call my work and tell them I wouldn't be in due to the circumstances. They are so understanding and just asked that we keep them updated on my status. I'm so lucky to work with great people and for a wonderful company! He also called his boss who said do what you need to do, but Kevin knew they were really busy that day and felt like he should go in if he could. Then I called my mom and of course I wanted her to come up, (there's just something about having your mom there when you are sick) so she got there right after I was moved upstairs. Kevin called his mom to report in and she offered to help in anyway. At that point we didn't know a whole lot so we were now just playing the waiting game for the GI doctor to come in and tell me what was next. I was really wanting a blessing, so we called my sister who lives about 10 minutes away and she sent my brother in law Adam right away. He is awesome and I am so grateful they live close.
About 630pm the GI doctor finally showed up and basically told me I was having a flare up of my Crohns, no duh, and that they needed to monitor me closely, especially because of the pregnancy. Another thing they were concerned with at that point was my appendix because I was having pretty intense lower right abdominal pain. They were hesitant however to perform any tests that might expose radiation to the baby so they were trying to hold off on doing an MRI if they could. Friday night I stayed alone and it was a long, terrible night. The pain was really bad off and on and the morphine wasn't helping me as much. I remember laying in bed, pleading with my Heavenly Father for Him to take the pain away because I couldn't handle it any longer. I hadn't slept much and I was just miserable. The pain did calm down some, and I was finally able to sleep from about 3-5am, 'til the nurse came in to do labs and get my blood work for the day. After that I dosed off and on all morning until Kevin got there.
Saturday was another bad day. I had lots of visitors though and that helped take my mind off the pain. My dad was here for the weekend so him, my step mom and little brother came up for a few hours, my in-laws came up, my parents, my grandparents, and my sister, brother in law and nephew too. I thought I was doing okay, but Saturday afternoon I got a really bad bout of pain and I could hardly stand it. It was worse than the pain Friday morning. That night my mom came up around dinner time so Kevin could take a break and eat. My sister was having my dad over for dinner so he went to their house for a couple hours. While he was gone I was just not doing good and had another, worse, bout of pain. I told my mom I couldn't take this anymore and something had to be done!!! She made the nurse call the doctor twice to get something figured out, and he put me on 2 medications to treat gastritis and ordered an ultrasound to hopefully rule out appendicitis. It was the safest thing for the baby. Gastritis is inflammation or irritation of the lining of the stomach. It can be really painful and the meds he ordered did give me some relief, enough that I could relax easier. Then my mom called Kevin and told him what was going on and asked if he and Adam could come and give me another blessing. My dad was still in town so he came too and actually gave me the blessing. It was so wonderful and I was blessed to be able to endure the pain my body was experiencing, that I would feel at peace, be able to relax easier, and get some rest and sleep at night. The pain was lessened almost immediately and right away I knew that the Lord was near and loved me and hadn't forgotten about me.
While in the hospital I was really hot and the AC in the room just didn't cool me off, so my sister brought me a small fan that I had blowing on me almost constantly the rest of the time I was there. It was s small thing but helped a lot!!
Saturday night the ultrasound tech came in, checked on the baby, but mostly checked on my appendix and lower right abdominal area. He stepped out for a few minutes and came back with his supervisor who then looked at my insides some more. They said my appendix wasn't easy to identify, but that I had some free fluid in my stomach and definitely inflammation going on from the Crohns disease. None of this was an answer, so the GI finally ordered an MRI for the next morning and I was put on an NPO diet, or no food or drink! I didn't have much of an appetite and I had been on a clear liquid diet which isn't appetizing anyway, but I didn't like not being able to drink or have ice chips. I also decided I didn't want to be alone at night anymore, so my mom offered to sleep up there with me. It was really hard to get out of bed by myself because the pain in my abdominal area was so intense. Kevin had been having to lift me out of bed and then I would hobble into the bathroom. My mom couldn't lift me but she could at least help me to sit up and then stand up. That night wasn't as bad as the previous and I was able to get some sleep.
Sunday morning we waited around for me to have my MRI and I was nervous about it because I've had them before and I get claustrophobic. They said they'd be able to give me something to help me relax but even still I was nervous. They finally came and took me downstairs for the test and I was somewhat relaxed but the whole time I just laid in there with a prayer in my heart and my eyes closed tight so I wouldn't be able to see the narrow tube I had been placed in. I did peak right at the end and I wasn't completely engulfed in the tube like my previous MRI's but I had made it through with no freak outs. Whew! The good news was my appendix wasn't inflamed, but I had a bowel perforation, or a hole in my bowel, that was allowing fluid and air to pass into my abdomen. This was not good. The GI had to contact a surgeon because I needed to have surgery to fix the hole. The surgeon came in right away and he wanted to hold off on surgery because of the pregnancy. Instead they ordered a PICC line to be placed in the morning and then they would start me on TPN, meaning a feeding tube, and some other fluids and they were hoping that my body would be able to heal the hole on its own because it was only the size of a pinhole. Being on the TPN allows my stomach to be at complete rest, which is why I was on an NPO diet, and that helps my stomach to heal itself. (A PICC line is a catheter placed in a vein in your arm that can carry fluids, TPN, etc. to your body, like an IV would; they can also take any blood samples they need for tests from the line which meant no more poking me with needles!! I was pretty bruised on both hands and arms at this point.) The surgeon had me transferred to the ISC on the surgical floor, 3rd floor, where I would be monitored more closely by more experienced nurses who only had 2 or 3 patients to monitor. The ISC is a step down from the ICU, which told me I was really sick. This all happened Sunday evening and quickly, so that helped the time to pass. That night my mom stayed with me again because Kevin had to go to work the next day and needed to sleep. He doesn't have PTO at work yet and so it was a huge blessing that my mom was so available to stay with me and to help me as much as she did.
Monday was a long day. I hadn't had anything to drink in a whole day and I had horrible cotton mouth. Talking was difficult at this point because it was so dry. I couldn't handle it! It was pure torture. How did people do this? I hated it. My mom and I figured out a way to cheat...she would ask the nurse for a glass of ice water and then I would take a drink and rinse out my mouth with that nice cold water, then have to spit it out. It did help a lot and my nurse was actually okay with me doing it as long as I didn't swallow any. I had to take 2 pills orally, twice a day, so that was the only time I was allowed to swallow the water, and the smallest amount possible. Monday was kind of a blur to me though. My sweet mother in law came down every afternoon during the week and sat with me for a few hours until Kevin got off work, so that my mom could go home and have a break. I was always so tired in the afternoons and felt bad sleeping every time she came but she didn't mind at all. She's just the sweetest, I sure do love her and Mike, I'm lucky to have such awesome in laws!! My dad was still in town that day so they all came up to visit me again. It was so nice of them to stay another night and go out of their way to visit me again before heading back home to Boise.
That night my uncle Todd, who is a chiropractor, came and rubbed my back and neck. After laying in bed for 4 days straight my back was really starting to hurt. The hard part was that I couldn't hardly move without being in much pain so I just laid on my back all of the time. Uncle Todd was another huge blessing to me that week. He brought me so much relief and made it so that I could sleep better at night.
Early Tuesday morning things took a sudden turn for the worse and fast! That night I woke up around midnight and I was really uncomfortable and just kind of miserable. I started to worry so I woke up my mom and told her and she got the nurse who gave me pain meds and said she'd keep a close eye on me. About 3 hours later I woke up and was even worse. Something was really wrong! Once again I woke up mom and she got the nurse. We discovered that my stomach was very distended. It looked as if my little pregnant belly had grown a couple months bigger in a matter of hours. The nurse immediately called the surgeon and got the ball rolling. She was worried. My nurse that night was truly a life saver. She was always one step ahead and always thinking. We loved her! I had had her as my nurse for a couple nights now so she was very familiar with me, which was another blessing at the time. The surgeon I had been originally assigned to had to be in Boise for the day Tuesday and had left me in the hands of Dr. Olaveson. I had never met him but when he heard from the nurse, he said he'd be in shortly. This was not looking good. At this point we just waited, tried to sleep, and waited some more til the surgeon showed up around 6am. He was very familiar with my case, asked a few questions, explained that I had fluid in my stomach, causing it to "grow" and that I needed surgery right away! The hole wasn't healing and was getting worse since it was allowing more fluid into my abdomen. It was the only answer at this point and it was serious. He said that there was a 50% chance of losing the baby, but that my health was most important. Of course I know that but I didn't want to lose this sweet baby. Immediately I was overcome again with that feeling that the baby would be okay. It was still scary, but I just knew. The surgeon said we'd be going to surgery as soon as he could get a room and team together. It was about 630am and I called Kevin, told him what was going on and he got up there within about 20 minutes. I told him what the surgeon said about the baby and it was so hard when he walked through that door. Neither of us could talk we just held onto each other and cried. This was serious and we were both scared. My brother in law Adam came up and helped Kevin administer a priesthood blessing. It was a very emotional morning for us but I just knew that no matter what everything was going to be okay. I was ready to get some relief and I was having faith that surgery was going to bring that to me.
The surgeon came back within 30 minutes and said we were going to have to wait a couple hours and so we decided that Kevin should go to work for a little bit and then he would come back before surgery. He left and about 45 minutes later transport showed up and said I'm here to take you to surgery. What?? They said a couple hours and my husband is at work and I need to see him before I go into surgery!! They let me call Kevin before taking me and it was hard to talk to him but hearing his voice helped. He said he would get there asap! They took me down to holding for surgery and they allowed my mom to come down with me. Miraculously Kevin got there in time and they allowed him to come back to holding too. It was a happy moment when I saw him walk through that curtain. At this point I was feeling good. I wasn't scared or nervous, I was ready. I was going to be okay!
As I mentioned earlier, I got hot really easy and without my fan in holding my face was bright red and people kept asking me if I was okay. I was just hot. I finally got a cold wash cloth for my face which helped for the time being.
When the surgeon got me opened up it was a lot worse than they anticipated. I had an additional perforation or hole that was in my small intestine and a lot bigger and that's what was allowing so much fluid into my abdomen. My bowel was really diseased due to the Crohns Disease and I had the 2 holes that needed fixed, so the surgeon decided to remove 108cm of my bowel. I had my entire Ileum (part of the small intestine) removed, other portions of the small intestine, and the ascending colon (part of the large intestine) removed, including my appendix. It totals to be about 1/3 of my colon that was removed. The 2 holes were included in the parts that were removed. This means that I still have Crohns Disease and at this point we are just making sure I don't have anymore active symptoms. I was previously taking Cimzia but having to have a bowel resection means that I am classified as a "Cimzia failure" and have to change medications. The baby did great and had no problems during surgery. Surgery was about 3 hours and then awhile in recovery before going back to my room. I came out of surgery with 3 tubes. An NG tube (a tube coming out of my nose that went down to my stomach), a catheter which was nice but not the most comfortable, and a wound vac. The surgeon said that they loosely closed up my abdomen, they had to cut me open, and so the wound vac was placed to helped close the wound and drain anything out of my abdomen. I was pretty miserable and so confused. Everyone was crying and worried and I wasn't sure what to think or say when my mom told me what they had ended up doing. It was such a weird feeling. I was required to get up and walk once that day after surgery which I thought would be impossible. The most walking I had done in 5 days was from my bed to the bathroom and back. That evening I finally got up and it was hard but it felt good. It was hard to drag all of tubes and the IV pole everywhere I went but I could only walk down about 2 rooms before I needed to go back. They also switched me to oral pain meds, Percocet, which worked a lot better than the morphine had. I don't remember much of Tuesday really, it's just a blur and this is just what I have been told for the most part.
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| This is an amateur drawing of your intestines and anything with a line through it was removed. |
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| My wound after surgery with the wound vac in. I had no idea what it would look like when they pulled off that bandage. |
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This is the only picture of me with the NG tube still in. Wayne called it my trunk haha. I hated that thing and hope to never have ever again!
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Wednesday was a pretty good day. The surgeon told me I had to walk 3-4 times a day and that I could have ICE CHIPS and SIPS OF WATER!!!!!!!!! That was great news. The better news was that my catheter and NG Tube could be removed as well. I was really scared to get my NG tube removed, but it really didn't hurt and was over in a few seconds. I hated that thing. I could feel the tube in my throat every time I swallowed and talked, and the nasty green stuff coming out of my stomach was stinky! I never want to have one of those things again! The rest of the day was so much better and it made it a lot easier to get up and walk. I still had the wound vac but that wasn't a bother to me. That afternoon I received two beautiful bouquets of flowers, one from my co-workers and the other from Kevin's company. They were so fragrant and really brightened up the room. It made me feel so loved and so grateful for the little things. (I had pics of all the flowers I received but they were on my old phone I destroyed...that story is still to come.)
Thursday was finally a good day. I was eating food and drinking and starting to feel hungry even. I didn't look that great but I was feeling better than I had in a week and I got to "clean up" finally! No showers yet but clean hair and freshly shaved legs was a huge improvement haha! It's the little things that really get you through those tough times and you have to look for them and then let me make you happy! The surgeon was hopeful I would go home the next day! I couldn't believe it but I wasn't going to argue if he thought I would be ready the next day. That was really motivating to me and helped my spirits to lift. Uncle Todd came up for the 4th night in a row and rubbed my back and neck again. My back was still pretty sore but being able to get up and walk, and sit in a chair for short amounts of time was helping too. The surgeon also took me off IV antibiotics and switched me to oral Augmentin. I hate that stuff but it was the best thing so I took it...
Friday morning, basically the middle of the night, I woke up sick. I started vomiting...yuck! I was so mad and worried. I was throwing up a lot and having other post surgical problems that I will leave out. After a few hours of that I realized that it was probably the Augmentin that was making me throw up, the other stuff I had no idea why that was happening. After a rough night and little to no sleep I really just wasn't feeling well and I was really disappointed about what happened. I had my heart set on going home that day and I figured I would be here another few days. I was really down and mom could tell. She was thinking maybe I should have another blessing but hadn't said anything to me yet. Next thing we knew Wayne was walking in my room and we didn't even know he was coming, he just showed up. A little bit later mom asked if I wanted a blessing and so Wayne administered a priesthood blessing and it really lifted my spirits, I immediately started feeling better and felt that it was all going to be okay. Apparently Wayne had been at home, getting ready to do yard work, when he had a feeling that he needed to come to the hospital. It was so cool how it all happened but I really needed a blessing and I hadn't even thought about it until mom asked me. It was amazing and another testimony strengthening experience. The surgeon came in around lunch time and apparently it's normal after bowel surgery to have those "other problems" so that made me feel better. The vomiting had stopped and we had to learn to eat, take a Zofran, and then 30 minutes later take the Augmentin. That was the only way I didn't get sick with it and the doctor wasn't going to switch my prescription. He was still good with sending me home that day as long as my OB and GI would discharge me too. He then removed my bandage and would vac and this is what I saw.
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| Excuse the nasty looking wound and skin. I had 14 staples and 6 open holes. WHAT?!?! |
Weirdest thing ever. I had no idea of what to expect but I'm not sure it was that exactly.. Anyway, it was looking good he said, so he put steristrips over each hole to pull it together and covered me back up with another bandage; gave me instructions about changing it and said to come to his office in 7-10 days to have the staples removed. Then he wrote discharge orders and that was that. One doctor down, 2 to go.
Read part 2 for the rest of the story.
