(We recommend caretakers have a journal/notebook with them during any hospital stay. We underestimated how much we would remember, I was out of it for days, and Tim was very sleep deprived and details slipped away quickly. We had to talk a lot of this out and write notes afterwards. Tim even mis-remembered when my second surgery was for a couple of days. He did not sleep well in the hospital room and it really affected his memory!)
----------------------------------------------------------------------------------------------------------------------- Wednesday (day of surgery)- The surgeon said it went well- she took out about a foot of bowel and everything was less complicated than she thought it would be and the rest of the bowel all looked great and normal. There were no fistulas and the surgeon could understand from looking at the MRI why everyone thought there were fistulas (the bowel that was diseased was all kinked up and just a mess.)
Thursday- This was a great day. They had already started me on solid foods. I seemed to be tolerating them very well. I was up and taking walks. We were in good spirits. We were even thinking about a trip to celebrate all of the stuff I have been through over the year and now getting past it. We were so optimistic about how things were going.
Friday- Thursday night, I began to experience a lot of pain and I was having diarrhea and incontinence. From Tim- She is also really down about it. They are trying to get her pain under control so she can eat better and move more. Since she's been off the IV pain meds, her pain is keeping her from progressing as much as she'd like. They have said this isn't uncommon to have a good day and then digress.
Saturday- Dr. Barry (Dr. Birnbaum's resident doctor) did his morning morning rounds early Saturday morning and was not pleased with the pain and distention in my belly area. He ordered x-rays to see what might be going on. The x-ray revealed a lot of free air in my body indicating a leak. I was taken back to surgery almost immediately.
Dr. Birnbaum consulted with Tim that I had leaked on a cross-section of a staple which was uncommon to happen. She told him that in all of her years, she had never seen a leak happen in that way. Dr. Birnbaum was confident that they were able to repair it and that we would go a lot slower with this recovery then after the first one. Although the repair surgery went well, I continued to have issues from my body fighting infection from what had leaked into my body. They had so much trouble keeping my fever down. I was being given suppositories for the fever, anti-viral and antibiotic meds.
I was very out of it on Saturday. I don't have any recollection of going in for the second surgery. Tim filled me in later that they had been preparing him that I would have a stoma for at least 6 months from the second surgery. Praise Jesus, that did not end up happening. Tim was so worried about me during this time that he had even asked the doctors a couple of times if I was going to die. They always said, "absolutely not."
Sunday- I was still in tremendous pain, despair & barely spoke. At some point during the day I began to have high fever that they could not get under control. Some of the nurses had even made indications that I may need to be moved to the ICU. An ICU nurse did come in one point and rallied everyone because he said that I did not look good. They were contemplating moving me to the ICU. I was on the brink of being septic (sepsis.) Thankfully, I was being cared for by really great doctors. My doctor was adamant that I did not need to go to the ICU and began me on a NG tube. The purpose was to get everything out of my stomach that was making me nauseous so I could get up and walk around and that would help wake my bowels up. I wasn't going to get better until my bowels began to wake up.
Tuesday- I began to return from the dark side. One of my brothers surprised me by driving 6+ hours to see me. From the day of the second surgery, Saturday through Monday, I was only allowed to have ice chips. I was given the go for clear liquids on Tuesday. It was a rough go during this time. I'm so thankful that my brother came to visit because it really refreshed my spirit. Friends had been on standby to bring the kids to see me, but Tim never felt like they "needed" to see me (i.e. I wasn't going to die) and he was afraid that they would be scared to see me in the hospital like I was.
Wednesday- My brother spent all afternoon/evening Tuesday and left around 3 pm on Wednesday. I was finally allowed to have full liquids on Wednesday. It was so good to have broth and anything I wanted to drink.
Thursday- They finally removed the NG tube. I was so happy to see it go. It is the third time in life that I have had to have one and it is super unpleasant and sorta painful when they put it in and take it out. Putting it in is hard, but usually you are ready for it do it's job and when it comes out, you know it is going to hurt, but you also know the relief you will feel once it is out. Once it was out, they started me on solid food. I started by eating half of a hospital burger. I remember it being really tasty. Tim had began to fill me in on everything that had happened from Friday through Monday. It took days for it all to sink in. I also had to come to terms with having a mid-line incision that I had not expected to have when first going in for surgery. I was taking walks again and able to use the restroom. They also removed me from the IV medications.
Friday- If I had lived closer to the hospital, they would have discharged me, but since we live over 5 hours away, Friday was spent pretending as if I was at home. I was to get around and do what I felt like and try to not rely much on the hospital care. I knew I needed another day in the hospital, but it was so hard not being able to go home. Twelve days away from your home and children when you had not been planning that, is so very hard.
We had wonderful nurses that took care of us at Barnes-Jewish. We did have one day that we had a nurse that we did not care for and that did not really check on me. We still aren't sure what was up with that.
Saturday- I was discharged early (10 am) so we could make the drive home. It was a tough ride for me. I was so, so, so sore. I dreaded getting in and out of the van to use the restroom. We made it though, and my family was so sweet and had made signs and had decorated a welcome home party for me. I was SO HAPPY to see my family!!!! They are my most favorite people. I'm so thankful for all they have done to help us.
The kids were very emotional the first few days that we were home. I think the stress of everything hit them when they finally had us back home again. I think they didn't sleep very well while we were gone and they just aren't good with things being off schedule. They were kept busy while we were gone, which was good, but I think it finally caught up with them.
We were so taken care of by our village. My SIL stayed with our kids for 12 days. She never even acted like it was a burden at all. I can never repay how much she loves us and did for us. Another SIL came to stay with us two weekends in a row after I came home. We had friends bring us meals and take the kids to school. Friends have taken the kids to do fun things and family have done the same and spoiled our kids with things. People have still been bringing us dinner since we have been home. The staff at Tim's school have showered us with love and we just can barely wrap our minds around how much people have done for us. It has stretched my heart and made me want to do more and find ways to reach out to people and love & bless them.
I had a rough first week home. I was in a lot of pain and could not bend over or do much of anything. Tim even has to help me into bed every night. I will say that I have improved a little bit every day. I had a yearly physical about a week after I got home. They removed most of my staples that day, but 4 were not ready to come out then. I have had to give myself Lovenox shots the entire time I've been home to help prevent blood clots. This week, I watched a YouTube video on how to remove staples and I removed the last 4 myself!!! It's crazy, but it was really easy and did not hurt at all. The nurse had put steri strips on my incision and they ended up practically burning my skin. I was allergic to something in the adhesive.
The last couple of days, I've noticed a big difference in how I'm getting around. Once I removed the steri strips, that removed a ton of discomfort and pain. I still cannot do very much without being in pain and very tired. It's going to take a long time before I fully recover from the surgery. I really haven't asked "why" too many times. I've just been struck at how quickly life can flip on you. I've also been overwhelmed by the love from others during this time. It has really stretched my heart. You hear about generosity a lot, but it is so different when you are the one on the receiving end.
I'm forever thankful for my amazing husband who never left my side throughout the entire ordeal. He is still waiting on me hand and foot and doing all of the work around here. The kids are helping where they can and people have been so kind to bring us meals every other night or so.
We have had so many people praying for us and we are so thankful for all of the love and prayers. I just want to share my praise to God for all of the blessings we have experienced. I had some days of deep despair, but I never once felt without hope. If we had not received any blessings, I still would not have felt alone. I have my life and my family and everything else is icing on the cake. I'm not more special than anyone else. I'm simply thankful that I was fixed and I can be here at home healing. I do feel so very blessed to have wonderful family and friends- not everyone is blessed in that way. It has challenged me to be better and maybe you reading this will have the same thoughts. Small gestures can have a big impact.
I probably should stop writing now. I am still on pain medication so I really hope that this all makes sense and I don't read it later and wonder, what in the world?!
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Please reach out by email if you ever have any questions about Crohn's - firstname.lastname@example.org