My colectomy (colon resection) experience (recovery, diet)

“I’m going to have to resect the colon.”

~ pretty much every surgeon on M*A*S*H at some point

In late June, 2018, I had to have a colectomy surgery, which is also known as a colon resection. Here’s a diary of my experience.

Background: Diverticulitis

I had two bouts of diverticulitis in the lower-left portion of my abdomen, once in 2015 and again late in 2017. After the second bout in 2017 the pain never went away completely, and would get significantly worse if I tried to eat normal, high-fiber foods like cereal, wheat bread, broccoli, etc.

For many months I tried to let the area heal by eating soft foods like eggs, peaches, and applesauce, and then a gastroenterologist started me on a prescription named Linzess to help take more of the pressure off the area, but it was all to no avail. In early June I tried to shave the little heads off some broccoli and eat it with some eggs, and when that led to significant pain in the lower-left, I/we decided that I was going to need the colectomy surgery.

The day before colectomy surgery

The day before the colectomy surgery was the dreaded “bowel prep” day. I had a light breakfast of eggs and applesauce, then started drinking the first cleansing drink at 10am. I had only liquids that afternoon, then drank the second half of the bowel prep drink later in the evening.

If you’re reading this article, I assume you’ve been through this process already, so I won’t go into the details. One thing I’ll say is that I recommend taking things a little earlier so you can get some sleep at night.

The morning of the colectomy surgery

Surgery was scheduled to start at 9:45am, but when I got to the hospital at 8:30am they said that there was a cancellation, so they wanted to start my surgery asap. So I was ushered into a small room where four people worked on me at the same time. One woman shaved my lower abdomen while another asked me questions. Just before the shaving another woman put an IV in my left arm, near the wrist. More or less at the same time the anesthesiologist asked me his questions. A fifth person in the room was a friend who came to the hospital with me, and who would help me over the next 2+ weeks.

All I asked for during this time was that they let me pee one last time before the surgery. So the last things I remember were going to the bathroom; seeing the surgeon when I walked back to the little room; saying goodbye to my friend; being wheeled into the surgery room; then the anesthesiologist lying and saying that I should breathe deeply because they were giving me oxygen, at which point I went unconscious.

Immediately after the surgery

The first thing I remember after the surgery was one of the nurses saying the time was 12:12. Then I heard them say that part of the colon was removed because of diverticula, scarring, and something else; I couldn’t remember the third thing they said.

I kinda-sorta checked to see if I had a colostomy bag, but I was still pretty out of it. I eventually asked my friend what happened, and she said the surgeon removed about a foot of the colon. This was a big surprise to me, as I thought he would only remove a few inches near the left hip where I was having pain.

I can’t remember if I asked my friend about the colostomy bag, or if I checked again, but either way, I was relieved that I didn’t have one. To be 100% honest, my thought was that if I was going to end up with a colostomy bag I was going to have to decide if I wanted to continue living that way. As they said in the tv series Eli Stone, I’m okay with living and I’m okay with dying, but it’s the in-between I have a problem with.

During this process I also learned that I had a catheter in me. If you’ve never had a catheter, they are generally very uncomfortable, but I think I had enough meds in me that it wasn’t a problem. Also, my bladder takes about ten hours to restart after surgery, so I actually wanted this, and had suggested it to the anesthesiologist. Whether they did it on my suggestion or as a normal procedure, I don’t know. But I was glad I wouldn’t have to get up to pee for the next 24 hours or so.

The day of the surgery

After some period of time — a few hours, I think — I had a few sips of water, and after that didn’t make me sick I had some apple juice.

The rest of the day involved taking pain medicine on the prescribed schedule. The nurses always say that you don’t want to get behind the pain, so I took the Percocet when the nurses suggested, even though I wasn’t feeling much pain.

I had no desire to walk, and I don’t think they wanted me to walk, so they put the leg pumps on my legs to help prevent blood clots. It was either this day or the next day when they started giving me a shot in my abdomen to further help prevent blood clots. That sounds painful, and it was, but not nearly as painful as I thought it would be.

The biggest thing about the first night is that the nurses wanted me to take Colace, even though I hadn’t eaten anything. I told them this was wrong, there was no reason to take any since I hadn’t eaten, but they said the surgeon prescribed it. This caused a great deal of discomfort that first night, with my digestive tract making extremely loud noises that several nurses could hear from several feet away from me.

The day after colectomy surgery

The day after surgery my digestive tract continued to make very loud noises, and it was extremely uncomfortable. The nurses wanted me to eat a little bit, but my abdomen was so bloated and was churning so much from the Colace that I had no desire to eat. I ordered some food, including jello and crackers, but had no desire to eat anything. I mostly just drank some fruit juice.

Around the 24-hour mark the nurses wanted to remove the catheter, but I asked them not to. I don’t remember why I asked this, but I think my digestive tract was so upset that it was making it difficult to do anything but try to find a comfortable position to lay in, so I wasn’t even walking yet.

Finally, right before the nurses shift change at 7pm, they insisted on removing the catheter. A female nurse instructed a male nurse in training how to do this.

Shortly after that, a nurse or an assistant told me I should pee into a plastic bottle so they could measure the output. At some point during the night I realized that nobody was really checking that, so I got up and peed in the toilet in the bathroom in my room. That was the first walking I did after the surgery. I checked with the nurses, and they showed me how to disconnect all of my wires so I wouldn’t set off any alarms during this process, and they said it was fine that I did this as long as I wasn’t dizzy.

Getting in and out of bed hurt my abdomen quite a bit. A nurse showed me the best way to get in and out of bed. This involved laying near the right edge of the bed, on my right side. I’d then drop my legs off the edge of the bed while pushing myself up from the bed with only my right arm. This got me into a sitting position while using as little of the abdominal muscles as possible. Getting back into bed was the revere of this process. I eventually got pretty good at this.

A strange thing was that they had me listed as a “fall risk.” I think this was because I went unconscious seven times during the process of finding out that I have Mast Cell Activation Disease (MCAD). Since I know how to treat myself for the MCAD, and I’m otherwise healthy, I was surprised to see that I was listed as a fall risk.

During this evening I started to run a mild fever several times, something like 99.4 at the most, so they just kept an eye on me for that.

Despite my protests, they also insisted that I take Dulcolax this evening. Once again I hadn’t eaten, so this made this night just as uncomfortable as the first night, with loud gurgling sounds all evening. Nurses kept listening to my abdomen for sounds of activity, so they were pleased to hear some of this, but it sure wasn’t making me happy. (Taking Colace and Dulcolax on an empty stomach is a very unpleasant experience.)

Two days after the surgery (Thursday)

I tried to eat some eggs this morning, but only had two small bites, as it was uncomfortable to eat. I ordered some other food, but stuck with decaf black coffee and fruit juice. Later in the day I would eat a few crackers.

I walked a little bit this morning, but not much, maybe 100-200 feet, at most.

Also, because I started running a mild fever during the night they had me start using a device to help improve my breathing. They said that better, deeper breathing had shown to help reduce fevers. When I started using the device I was surprised at how shallow my breathing was. From previous tests I knew my lungs are about five liters, but I could only breathe in about one liter, at best. That was an eye opener, and I realized (a) it was hard to breathe deeper, and (b) it hurt to breathe deeper.

I walked twice more this day, still not very far, even shorter than the first walk. In total I also ate a few peaches, two slices of plain white toast, four crackers, along with my decaf coffee and fruit juices.

Once again they made me take Dulcolax in the evening, and it led to a lot of gurgling sounds, bloating, and discomfort. During the evening I decided that would be the last time I’d take that.

One of the preconditions to leaving the hospital is that you need to be able to pass gas, and some time during this evening I started doing that. Nurses continued to listen to my abdomen, and seemed happy with the noises they were hearing.

One thing that happened during this process is that I couldn’t tell if I had to pass gas or have a bowel movement, so each time I felt the urge for something to happen I walked to the bathroom. Eventually I passed some black liquid, which nurses said was probably dried blood from the surgery. It’s funny how pleased the nurses were that this was happening.

Three days after surgery (Friday)

This morning I was pleasantly surprised that I could walk much further than I did yesterday, and my breathing was also deeper, a little less than two liters at my deepest.

Unfortunately we ran into a problem with the nurses this day, and because they were late/slow/busy I fell behind on my pain medicine, which made my pain significantly worse.

Late in the afternoon I had two more bowel movements, which continued to make the nurses happy. The output was still a black liquid, which concerned me, but not the nurses.

I started sneezing today, and quickly learned that I need to hold my abdomen when this happens. Not holding the abdomen is bad because it hurts, and can also cause damage. I grab a pillow if I have some warning, otherwise I just hold the abdomen with my arms.

There was some debate about releasing me this day, but I didn’t feel ready to leave, so my surgeon’s assistant decided to keep me in the hospital one more day. I also kept having a mild fever, which was another consideration.

Around 6:30pm I had another bowel movement, and this one was red like blood. This caused some concern by one nurse, who I would later learn wasn’t very experienced. After the shift change at 7pm a more experienced nurse would say that if it was fresh red blood you’d be able to smell it down the hallway, so mine probably wasn’t fresh; it was probably still blood left over from the surgery.

I thought I might have to fight about taking Dulcolax tonight, but the nurse also thought it was a good idea not to take it, so there was no battle, I just didn’t take any.

Around 11pm they woke me up to take x-rays of my abdomen. The surgeon had been told about the bloody stool, and so they decided to look for something (sorry, I don’t remember what).

Four days after the surgery

A weird thing I noticed this morning was how different everything in my lower abdomen felt. I could clearly feel and see that things had been rearranged by the surgeon. It was like having plastic surgery in that area, but it wasn’t really a good plastic surgery.

Nobody ever said anything about the result of the x-rays, so I assumed everything was fine. (I asked a nurse about them the next morning, but I don’t recall that she ever gave me an answer.)

Without the Colace and Dulcolax the gurgling in my abdomen had reduced considerably. About forty-five minutes after eating four crackers for breakfast I had some stomach cramps.

I still had some issues today, but generally felt much better than the previous day, so I had it in my mind that I would leave the hospital today. I could walk much farther, and indeed, it felt a little better to stand than to lay down any longer.

I was discharged from the hospital in the late afternoon. A first surprise was that I didn’t fit in my pants. I intentionally wore a large pair of blue jeans to the hospital, but when I went to zip them up, my abdomen was so swollen, I couldn’t zip them up. In retrospect I should have brought a large pair of sweat pants instead.

I ate a little more this day, so after we got the pain medication from the pharmacy, I decided to take a Dulcolax pill. Mentally I never wanted to see another Colace or Dulcolax pill the rest of my life, but I knew this was necessary. The surgeon and nurses didn’t want me to strain to have a bowel movement at all.

Sleeping this night was very uncomfortable. A nice thing about a hospital bed is that you can adjust it quite a bit, but my bed at home is just flat. I tried to sleep upright with the help of a bean bag chair, but that didn’t feel good, so I laid flat. During the night something about my right side felt really weird, so after a while I slept on my left side. It also hurt my abdomen quite a bit to roll from my right side to my left side.

Five days after the surgery

In the morning I lifted up my shirt and looked in the mirror, and saw that it looked like a golf ball or baseball was sticking out from the right side of my lower abdomen. I knew I felt weird in that area, but when I looked in the mirror it was weird/gross to see that distention. It freaked me out quite a bit.

In the end it turned out that I had a ton of gas, and I couldn’t seem to pass it as fast as it kept reproducing. I was uncomfortable with gas pain most of the day, but by the end of the day the lump in my abdomen had gone down considerably.

Because of the gas I stuck with fluids most of the day, and didn’t take any Dulcolax this day. I walked quite a bit this day in an effort to get rid of the gas.

I slept a little better this night, and decided to sleep on my left side most of the night.

Six days after the surgery

I ate a little bit today, including eggs, bread, applesauce, and crackers. After some debate I decided to take Dulcolax in the evening, and it kept me up most of the night. During the night I decided that if I ever took it again, I would take it in the afternoon instead of the evening.

I walked quite a bit again this day.

Seven days after the surgery

When I woke up this morning and looked in the mirror I found some significant bruising. I asked my friend about it and she said it was probably normal.

The Dulcolax finally wore off late in the afternoon. I sure wasn’t going to take any more today.

Ten days after the surgery

My friend drove me to see the surgeon today. He seemed pleased with everything. He mentioned that the part of the colon he removed had been sent off for a biopsy (or something similar, I don’t remember the term), and there were no signs of cancer or anything. I also asked him what exactly he did, and on a diagram on the wall he showed me the area of the colon he removed. We also asked if I could drive, and he said it was okay as long as I wasn’t taking the narcotics. I had switched to ibuprofen a few days ago, so he said it was okay.

Before going in to see him I requested a copy of his notes from the hospital. Before this I knew that he had removed about one foot of the colon, and I also knew about the diverticula. The nurses mentioned the word “scarring,” and his notes also stated that there was thickening, and also that a portion of the colon had also adhered itself to the left pelvic wall.

Twelve days after the surgery

Over the next few days things seemed a little better, a little more consistent, so I was happy. On Day 12 following the surgery my friend and I went out for a little while when I suddenly had a severe pain in my lower-right abdomen. We canceled our plans and she got me home quickly.

I felt stiff and constipated across the front of my abdomen, but I couldn’t have a bowel movement. Between the constipation and sharp pain in the abdomen I decided to have one enema. When that didn’t do much I had another one. Things were better, but I was very uncomfortable. I tried walking to relieve the discomfort, but in the end, time was the only thing that made me feel better.

Days 13-22

Somewhere around Day 14 I drove my car for the first time, and on Day 18 I drove my friend to the airport so she could go home. (I should say that I live in a low-traffic area, so this isn’t like trying to drive in rush hour traffic in Chicago.) She was a great help during this time, and I couldn’t have done it without her.

Through Day #22 (today) the rest of the recovery process has been more of the same. The biggest issues are that I’m not supposed to lift anything over twenty pounds, and I’m also not supposed to strain at all to have a bowel movement. For this second condition I take Miralax every day, which is much more gentle than Colace or Dulcolax, but still leaves me in the bathroom 8-12 times a day. (That’s not a misprint.) This makes it hard to leave the house.

I can eat much more now, but I’m trying to stay with soft foods. Some doctors tell you to stay on a Low Residue Diet for 6-8 weeks, while others say that you can go back to eating a high-fiber diet, but I feel more comfortable with soft foods. Most of my diet has been eggs, peaches, applesauce, simple cookies, and those little sugar-covered “donettes.” I figure that if I’m going to eat soft foods, I might as well eat a few that I enjoy. :)

Over the last few days I started adding in small quantities of things like potato and tortilla chips along with small doses of fiber pills. So far I haven’t had any problems, but I don’t want to push it, so I mostly stick with the soft foods.

I still have some pain in the abdomen, mostly when I’m sleeping. I’ve learned to sleep on my back most of the night, and then put a pillow under my abdomen when I sleep on my sides.

Getting back to work

Because I work behind a desk as a writer and programmer, I was able to start working part-time again somewhere around Day 14. I took it slow at first, and now on Day 22 I can work a mostly-normal schedule, aside from the frequent bathroom trips.

Because I’m not supposed to lift anything over twenty pounds for at least the next four weeks, there are many physical jobs I wouldn’t be able to work now. I suspect that people who work physical jobs wouldn’t be able to return to work for at least eight weeks, maybe more.

Four weeks after surgery

It’s now four weeks after the colectomy surgery, and I have to say, out of the seven surgeries I’ve had so far, this has been the most difficult to recover from. Three nights ago I started running a fever and had pain in the lower-left abdomen, and fortunately it died down after 6-8 hours. Then last night I had significant pain the mid to lower right portion of the abdomen after I tried to some white bread with my usual diet of soft foods. I constantly have pain in different areas of the colon and abdomen.

Part of this is because my surgeon suggest that I try to eat some “regular” food with large doses of fiber (Metamucil). That was a painful disaster, so I’ve gone back to eating only soft foods like eggs, peaches, cheap rice (which is easier to digest than good rice), applesauce, jello, and sugar cookies.

I had an infection that lasted ten days after I had my gallbladder removed, and that was a miserable experience, but this surgery is harder because even after four weeks I still have to be very careful about what I eat, and I get pain in the lower abdomen both from eating and from weird things, like turning sideways to reach for something. I can imagine that there are much worse surgeries, but this one is difficult.

Lessons learned

One thing I want to say under the “Lessons Learned” category is that I told doctors for many years that I couldn’t poop. Typical conversations went like this:

Me: I can’t poop.

Doctor: Take more Metamucil.

Me: It’s physically impossible for me to take more Metamucil. I take something like eight doses a day.

some time later i have the same conversation with a different doctor

Doctor: Okay, take some Miralax on top of that.

Unfortunately, by the time things got to a manageable point, I had already developed diverticula, and then had the two bouts of diverticulitis.

So my advice here is that if you don’t want to have a colon resection surgery — and you don’t — take care of this problem much faster than I did. I let it linger for a long time because I thought it was just a part of the aging process, when in fact it was probably related to the mast cell activation disease (MCAD).

The end?

Well, I sure hope this is the end of these type of experiences. As the surgeon said on Day 10, I’m still not out of the woods, but hopefully each day and week will continue to get better until I can finally get back to a normal life.