It’s been quite the year, or better yet past 6 months. As the end of the year approaches, I’ve been thinking about everything my body has gone through mentally and physically this year.
After battling a flare that was just getting increasingly worse, my GI and I decided in July (2019) that surgery was my best option. I was referred to see a really good surgeon the following week after I saw my GI, however I had gotten so sick that I was put in the hospital by the surgeon I was supposed to see that day for my consult. He saw me in the hospital and agreed that surgery was the best option and he would do the procedure in 3 separate surgeries.
Surgery #1 would consist of just removing my colon and giving me a temporary end ileostomy (total colectomy). Surgery #2 he would remove my rectum, all but the rectal stump would be left, form my j-pouch with some of my small intestines, and give me a new stoma called a temporary loop ileostomy (total proctocolectomy with ileal pouch-anal anastomosis). Surgery #3 would be the reversal step where he would put the stoma back inside of me and connect everything back up to poo the old way again.
I have had 2 of these 3 steps so far and wanted to explain a little more about them, as most people don’t fully understand what all they are, as well as give a little more in depth on my experiences these last 6 months.
Before I explain more on my experiences with these surgeries so far, I should probably explain a little more on a common question: What exactly is an ileostomy? An ileostomy is similar to a colostomy, except it uses the last part of your small intestines (ileum) instead of your colon. The stoma is created by bringing the end or loop of the small intestines out onto the surface of the skin. Waste is then rerouted out through this opening and collected in a pouch system adhered to the skin.
I was in the hospital for 13 days that first surgery. I was extremely ill. I saw the surgeon on a Wednesday and he wanted to give me through the weekend to see if my colon could calm down a little bit with the medicine they were going to give me. I finally ended up with an NG tube (enemy #1) because I just couldn’t stop throwing up. I was NPO and getting nutrition from a bag hooked to my PICC line, which can give you diarrhea – queue waking up in the middle of the night pooping myself a ton! By Monday, I was so ready for my surgery and to finally get some relief. My surgery unfortunately wasn’t until late afternoon, which was disappointing because I just wanted my colon out of my body. I was nervous but ready when they came to take me back to the pre-surgery area. When it was time, the anesthesiologist gave me a little medication that he called the “don’t care what’s going on meds”. As I was being wheeled to the operating room, I told him I was definitely not caring. I remember being wheeled into the OR room and scooting from my bed to the operating table. Then it was lights out.
In recovery, as I was waking up the nurse would have me rate my pain and give me pain medication as needed. Once my pain level was more manageable I was wheeled off to my room where my parents had been told to meet me. After surgery I pretty much spent that first evening sleeping. My nurses really helped me by adding ice packs to the area where my incisions were. Since it was the evening and I was pretty sleepy, I wasn’t fully aware of how sore and in pain I was until the next morning.
I had never had surgery before this one and let me tell you right now, you do not realize how much you use your core until it’s hella sore and in pain. Every time I needed to get up I tried to get my hospital bed as upright as I could, but then I still had to work my way to the edge of the bed to get up and every movement HURT! My surgeon took my colon out laparoscopically and besides my ileostomy, I had 3 small incisions. Other than the pain just turning my body and taking deep breaths, I was feeling so much better, until two days later when I started throwing up. The pain from throwing up with fresh incisions is pretty unbearable. I had to hold my hand against my ileostomy bag because it felt like it was going to pop out of my stomach from the heaving. My surgeon wasn’t worried though since I had been so sick and he said the small intestines don’t like to be touched and you can get what is called an ileus – where your organs just haven’t fully woken up from surgery. I was having some output in my bag but not nearly enough and essentially my small intestines hadn’t fully woken up to kick in and do their job. The best way to help it was to walk. Walking after surgery is great to gain strength and help prevent things like the ileus from happening and to get the trapped gas from surgery moving, but it’s also very painful. Thankfully after a day I stopped throwing up and was able to start a liquid diet. I was released from the hospital after a few more days of diet increase. Other than feeling very weak and exhausted, I was feeling so much better than when I had gone into the hospital.
I’ll be honest, I had several meltdowns back home after surgery. I felt better, but also was learning to adapt to this new thing on my body. I think the biggest hurdle was my end ileostomy was very long. It made it great for not ever having a leak, but also very uncomfortable having anything press against it. It was summer so I was all good with wearing flowing dresses and if I did want to wear jeans I had bought a pair of maternity jeans so I could roll the waist band down under my bag.
After my two week check up with my surgeon he said we could schedule the next part of surgery as soon as 8 weeks after the first one. I was all for it, mainly because I knew I would be getting a new stoma and it would most definitely be smaller than the current one since it would be a loop vs an end ileostomy. My surgeon said that the surgery would be extensive like the last surgery, since he would be removing my rectum and forming my j-pouch, but I’d be feeling better going into surgery, unlike with the last one, so it would be better recovery wise.
Two months later, I was ready for surgery #2. This time though, I did have to do a little prep. The day before surgery was a liquid only diet, followed by downing a bottle of magnesium citrate that evening. It was very interesting having what usually I’ve experienced with colonoscopy prep coming out into my bag instead of sitting on a toilet all night.
Surgery when you’re feeling better going into it is a much better experience than when you’re sick as a dog going into it. I was only in the hospital 5 days with this surgery. I was surprised how great I felt after! Sure, I was sore and in pain, but not nearly like with the first surgery. My mom and I made a point to do a lot of walking around the nurses station as soon as I had my catheter removed, to prevent the dreaded ileus from happening again. I had a drain tube that was draining fluid around my pouch. The drain tube was probably the most uncomfortable piece of this surgery. Every time the nurses came to empty it they would pull on the tube coming out of my hip to make sure nothing was getting stuck and it would suction inside my body which made me a little woozy. The day I was going to be discharged my surgeon did a scope on my j-pouch called a flexible sigmoidoscopy. It’s very similar to a colonoscopy except he didn’t go in far, just checking out the pouch he created. He said it all looked great and he was also able to remove my drain tube while I was under the light anesthesia since the fluid had lightened up considerably.
I really couldn’t believe how great I felt. My stoma was smaller and I was loving it, other than sort of starting over again with it and getting used to it. The week of my two week check up with my surgeon though I started experiencing abdominal pain. I associated with gas pain since my stoma would usually pass gas or output would come out after the pain subsided. I let my surgeon know and he told me of some gas medications to try to help, but said it would probably go away after a while. However the pain started to increase and become almost constant throughout the day. Two days after I saw my surgeon I experienced what a blockage would feel like, however it wasn’t really a blockage.
It was just a few hours after I had had dinner and my stomach bloated up and hurt really bad. I drank a little hot tea to see if that would help, but ended up throwing up everything from dinner. I felt better and thought maybe it was just a bug. Unfortunately I couldn’t stop throwing up once I had started and my mom took me to the ER. They quickly rushed me back into a room for testing, knowing that I was throwing up and not having any output in my bag was a clear indication of some kind of obstruction.
A CT scan showed there was something right behind my stoma, unfortunately they had to do the scan without contrast since I couldn’t drink anything without throwing up. In went the NG tube (my nemesis) and my surgeon came by to say that they would try to do a small bowel prep follow through to get a better picture the next day. He said that sometimes the small intestines can get kinked or there could be scar tissue from the past surgeries.
I was admitted into a room and the next day we attempted to do a small bowel prep follow through. I say attempt because I ended up throwing up all the contrast they fed through my NG tube. A small bowel prep follow through is where x-rays are taken about every 15 minutes to watch as the contrast you drink goes through your body. They got a few x-rays completed before it all came up. They kept doing to the x-rays since some contrast was still in my system, but it didn’t provide a very clear picture. My surgeon decided he would do surgery on me the next day to see what exactly was going on. He wasn’t sure what he’d see, it could be anything from a bowel resection to redoing my stoma.
After I woke up from surgery the next day he told me I had adhesions right behind my stoma. Adhesions can come from the scar tissue from surgery and have to be removed by surgery (kinda ironic huh). He told me he started out laparoscopically but was afraid of tearing my small intestines and ended up having to cut me open. He removed the adhesions and did redo my stoma to form a little bigger opening than before. I ended up staying in the hospital for 9 days with this surgery. I was thankful that on discharge day he said my middle wound looked ok, just a little fluid leaking but overall ok, to remove the staples I had so I wouldn’t go home with them.
I’ve had some ups and downs since that last emergency surgery, especially around my wound through my belly button near my stoma. Learning to take care of that for a while was a little bit of a challenge and work my bag around it. Thankfully though things are much better and I’m finally feeling like myself again. Just trying to gain my strength back, as well as some weight back.
I hope that I can help anyone going through a rough time or recovering from surgery that feels like there’s no light at the end of the tunnel. Please know that there is! It might take some time, but there is!
I’m looking forward to what the new year has in store for me, and after this past year I feel like I can accomplish anything!
Happy New Year friends!
Until next time,