After suffering with UC for 4.5 years and Remicade doing nothing for me, I decided it was time to go through with surgery. I met with a surgeon at the Cleveland Clinic and was told I could have a j-pouch, but it would take three stages because of how bad I was. It's now been 3 weeks since that first stage and I feel better than I have in probably two and a half years. I'm not quite back to a full diet yet, but for the most part I am eating whatever I want. For reference, the last two weeks before the surgery all I could eat was white rice, applesauce, chicken, and a few other "safe" items.
When making the decision to have surgery, I read a lot of posts on here from people who had also considered it. I also read a lot of posts from people who have gone through with it. This helped with coming to terms with all of it and put some of my concerns to rest as well. I wanted to add my experience with the first stage for anyone who might be interested. I hope it can help someone who is in a similar situation to where I was this past summer. It's a long read, but I wanted to include as much detail as I could. This is an edited repost of what I sent to all of my friends and family who wanted to know about it...
"It began with me going into the hospital a day earlier than scheduled when my symptoms got to a point where I was seriously concerned about my overall health. The biggest issue was that I was supposed to stop consumption of all fluids at midnight. I could hardly keep myself hydrated as it was, so I knew I wouldn't make it those 6-7 hours. Add to it that the pain had reached a level that was making me nauseous/shakey and it just seemed right to check myself in. I spent Monday basically resting up for the surgery.
I was informed that I was the first surgery of the day and they would be coming to get me around 6:30. An emergency came up that morning, though, and it was more like 7:30 by the time I was wheeled over to the surgery center.
(side note: I know the Cleveland Clinic is big, but seeing a hallway lined with at least 15 very well-equipped surgery rooms on each side was still an amazing sight! It was almost like being on some futuristic spaceship or something with all the doctors running around everywhere and it being so bright.)
The anesthesiologist's assistant came out into the hall and asked me a few questions about my medical history. Then the gas doc showed up and asked me a few more before giving me an oxygen tube. The next thing I remember is being back in my actual hospital room. No gas mask. No counting back from 10. Not even the surgery room itself. The procedure typically takes between three and four hours, but apparently mine was finished in just over two and a half. They were unable to perform the colon removal laparoscopically (due to how much mine had deteriorated), but I got away with only one incision running from my bellybutton straight down about 5 inches.
I have no memories of the recovery room. I have no real memories of the rest of Tuesday. In fact, my first solid thoughts are of trying to stay awake while visiting with my parents on Thursday. I spent a good deal of time sleeping during those first few days. To control the post-surgery pain, they gave me a pump that allowed me to get shots of morphine at controlled intervals. It helped, but also kept me pretty out of it as well.
Thursday's lunch is when I ate my first meal of clear liquids (soup broth, jello, and tea) and by Friday morning I was up to soft solids. I don't think I'll ever forget eating that ham and cheese omelette, oatmeal, and banana! Lunch and dinner also went down well and my Ileostomy was beginning to function properly. Everything progressed as it should through Saturday morning and so the doctors felt I was ready to go home after lunch.
I spent Saturday and Sunday at my parents' house with Jeanine. We ate real food and I began to remember what it was like to look forward to meals again. Instead of drinking a bunch of liquids to prevent being up in pain all night as I would in the past, I made a snack when I got hungry at ten o'clock at night. I even found myself laying in bed Sunday morning trying to decide what I wanted for breakfast. Eating was no longer a necessary chore, but rather something to enjoy and get excited about.
Things took a quick turn for the worse on Monday morning, however. After seeing Jeanine off bright and early, I went back to bed and woke up at 8am with some pain across the top of my abdomen. It continued to grow worse and by the time the home healthcare nurse showed up at 8:30 I was in serious trouble. She was scheduled to come and get me started on my in-home training sessions for taking care of my ileostomy, but instead spent her time calling the Clinic and getting me admitted to the emergency room. My mom and I headed back downtown and by 9:45 I was settling into an ER room.
The ER experience lasted about 11 hours and was absolutely horrible. It consisted of waiting forever to get the results from my CAT scan, having to deal with being crammed in a room originally meant for one bed with two other patients, and basically getting crapty service from most workers due to obvious understaffing. Luckily we had an amazing nurse who stayed on top of my case's progress and worked with me to find a pain medication that actually worked (morphine was doing nothing for what was honestly the worst pain I have ever experienced in my life). Once I had some Dilaudid in me I could actually calm down and rest a little bit.
Eventually the results came back (four hours after the scan) that there was a small pocket of fluid that had developed near my bellybutton. The colorectal surgeon who came and met with me felt that it wasn't large enough to justify draining, nor was it necessarily the cause of the pain. My white blood cell count was also elevated slightly, which pointed at the possibility of an infection. Without a fever or other symptoms, however, this wasn't her first concern. She wanted me admitted and monitored overnight as there was a possibility that a partial blockage had developed. It apparently happens to a lot of people and is the reason why I must follow a restricted diet for the first six weeks.
So I waited another three hours for a bed to open up and be cleaned on the floor where I had recovered from surgery. The ER had gotten so slammed by the time I finally left that they literally did not have enough beds for all the ambulances coming in--let alone rooms to put them in. I ended up waiting in a wheelchair in the middle of the ER hallway for the last half hour!
Ironically, my new room was right next door to where I stayed the first time. They tucked me in, gave me another morphine pump, and left me to sleep. Early Tuesday I was visited by my surgeon's resident and surgical nurse. They said the white cell count was down to normal and that a blockage still seemed like the most logical answer. The plan was to let me try soft solids again and control the pain as the issue hopefully resolved itself. Things improved slowly throughout the day and by last night most of the pain I still had was at the incision site.
They came back this morning with what they could come up with as an answer to the whole problem. They feel that there was, in fact, a partial blockage that worked itself out. What compounded the problem was that pocket of fluid that some people develop when the surgery is preformed through an abdominal incision like mine. That amount of fluid is enough to put pressure on my intestines when food passes through. It's not enough, however, to justify the amount of work that would go into draining it. They would have to re-open the incision (which is apparently healing perfectly), drain the fluid, pack it, close it temporarily, and repeat the whole process a couple of times.
So we decided to let me eat breakfast and lunch and see how it went. I experience a good amount of pain after eating, but this should go away as the fluid is slowly reabsorbed by my body. They sent me home with the Vicodin I had from before, as well as some oxycodone. The meds seem to be taking care of most of the pain and so all I can do at this point is give it time. They're only concern is that the fluid collection has the potential to become infected. The good news is that the risk of this is low and I know what symptoms to be on the lookout for.
So apparently I have experienced one or two of the most common complications that can develop with this type of surgery. It sucks a lot, but I was warned about the risks beforehand and it's in no way representative of the quality of work done by the surgeon. I still have great confidence in him and look forward to the next two stages. Hopefully this will be the last of it and soon it will all be in the past."
As I said above it's now been three weeks since the surgery and other than the partial blockage, everything has gone extremely well. I'm back at work and don't even need to take the pain medication anymore. Nuts, lettuce/spinach, raw fruits, and some vegetables are the only things I can't eat yet. However, in three more weeks I will be able to start trying them again. Dealing with the ileostomy bag did take some getting used to, but it already seems routine for the most part now. I've only completed the first stage, but I can already tell I made what was the right decision for me. The positive effect it has had on my personality and attitude has been noticed by everyone around me (and by me). I knew the UC was bringing me down, but I had no idea just how much. If you are considering having the surgery yourself, my advice is GO FOR IT.
26-year-old diagnosed with UC in 2004
Underwent stage one of J-Pouch surgery on September 16, 2008
Now living symptom-free