Coping With Colon Resection

I am a 45 year old female… I have hereditary diverticular disease that has claimed the lives of several of my family members.

I was diagnosed with the disease at the age of 35, but know that I have suffered from this disease for far longer. I can remember having an attack at the age of 21 when I was in college. I had barium enema imaging several times over the years to track the progress of this disease. I should have had this surgery years ago, but just could not wrap my head around it.

I underwent laparoscopic surgery. The surgeon removed half of my transverse and entire descending and sigmoid colon. He then reattached my transverse colon to the partial portion left of the end of my sigmoid colon just before the rectum. The surgeon reattached the two parts of the colon with staples that are permanent. Do or don’t ask about the stapler.

Prior to the surgery, I underwent a battery of tests, colonoscopy, pelvic and abdominal CT scans, and a barium enema with contrast. I also sought a second opinion from another gastric surgeon. The general consensus between my GI doctor, the second opinion and my surgeon was that I have the surgery due to the severity of the disease in someone so young (42) and the frequency of acute diverticulitis attacks. One of which landed me on the floor in front of customers at the Apple Genius Bar where I work. Not good!

The imaging showed 25 diverticula per every 6 inches of 2 feet of my transverse and descending colon. Intense. This was not going to get better and I am not getting younger. The attacks were frequent, horrifically painful and ruined my love of food and cooking. I would spend days creating food that I could not eat! I had to travel with Cipro in my bag in case of an attack. At this point, the risks of the disease far outweighed the risk of the surgery! And I could not live like this anymore!

Pre-surgery:
The day before is the “cleansing” and man does that stuff taste like AWFUL! But it has to be done! Stay home near the restroom.

THE SURGERY:
In my case, the surgeon used a four trocar approach. One just above the pubic bone for air injection, one just above the left hip bone for camera, one at the right hip bone for lights and one larger at the umbilical junction for all the procedure/removal of the colon from my body. They actually move the cameras, lights and air and instruments around to the different trocars depending on where the surgeon is working at the time. LIGHTS! CAMERA! ACTION!

WAKING UP FROM SURGERY:
O.K. this is the really nasty part! You wake up with tubes everywhere! Arms, nose, stomach, catheter, incisions. (Three small incisions and one larger one that are GLUED SHUT. No external staples or sutures.)

DO NOT LET ANYONE VISIT YOU EXCEPT YOUR SPOUSE! YOU DO NOT WANT ANYONE TO SEE YOU LIKE THIS!!!

The whole of your digestive system has been paralyzed for the surgery. Including your stomach. The stomach does still secrete digestive juices. SO there is a gastric tube up/down your nose and into your stomach to extract the juices via a suction device on the wall behind your bed. OMG!!! It totally makes you forget the pain in your belly and is the most freaky sensation. The tube rests on your vocal cords and thus renders you speechless for three days. As well as in your line of sight going past you so you can see the muck that “is you” passing by your face. There is no way to even whisper, and you get so frustrated trying to tell someone something! For example; the bed I was in had a bad wheel much like a shopping cart can have. I tried to tell the “transportation” dude taking me to my room after 12 hours in the recovery room, to be careful and he could not hear me! I used hand motions to have him come close to my face and told him this bed is MESSED UP!!!! He then proceeded (not his fault) to run my bed into every wall, door, railing, elevator bumper etc. Every collision of that bed into the wall caused indescribable pain and I will have nightmares about it for my lifetime! Again, not his fault, he could not hear me, and probably my breath knocked him back from even trying to understand what I was saying! Where’s an Eclipse Gum when you need one? Damn that pesky Gastric Tube Breath!

NEXT:
For the next 5 days, I had only ice chips and lots of morphine/delaudid. You can press your pain button every 6 minutes. You have no hunger because the system is still “shut down.” I must say that food commercials on T.V. did make me crazy even though it was food I would never eat if not in the hospital. It’s a psychological thing. Advertising works!

The nurses and technicians come in hourly for BP, Blood O2, temp readings and to deliver more ice chips. They will give you a blood thinning injection in your stomach or upper thigh everyday. This really burns. PUSH THE BUTTON! They remind you to push your pain button. Everything becomes a blur because you don’t want to see that TUBE from your stomach so you keep pushing the button. You can’t talk, can’t walk, can’t eat…can’t sleep well because you can’t turn over. There is a device on your lower legs that inflates and deflates every few minute to keep circulation going (as if the compression stockings weren’t bad enough!)

Then they make you walk!!! OH this is fun! Tubes everywhere. Getting you out of bed and ready for this walk takes far longer than you will be able to walk! It’s like taking a drunken bowl of spaghetti for a walk! With bags of sauce on the side, hanging all over your I.V./pain computer-rolling-contraption of heaven and h***, and what a fashion statement you are! You don’t care and everyone looks like you do…dazed and tubed!
Luckily I was still unable to talk so no one heard the expletives that come with walking for the first time after this “gut wrenching” surgery!

It is painful and the gastric tube is something you cannot ignore. It’s just so freaky!!! The gastric tube will be removed by day three. It’s a weird sensation but the doctor will do it fast and early in the morning while you are drugged and half asleep. Thank you! This is the most wonderful relief besides the catheter removal which is day four.

THE WEEK IN THE HOSPITAL:
BLUR! PUSH YOUR BUTTON AS OFTEN AS POSSIBLE. This drug takes time into the Twilight Zone. Minutes pass like hours and hours pass by minutes. Sometimes you will watch the clock to push the button again and you’ll be amazed at how little or how much time has elapsed between pushes of the button.

MAKE SURE TO HAVE A PILLOW OVER YOUR TUMMY TO PUSH DOWN ON WHEN YOU LAUGH, COUGH OR SNEEZE!!! THIS IS A MUST!!!

Remember to use the buttons on your bed to change positions and not your abdominal muscles!!!

Walk as much as possible, especially after you start eating again. This will be painful but will help push the air out of your system. If you eat soup and remain in bed the air will move around and make you very uncomfortable. If you are walking the air will go up to your shoulders and someone can help with that as you pass the nurses station. …And the digestive tract starts waking up!

There are sounds that come from your body that have only, or not, been created for alien monster movies or the X-Files. I am not kidding! People in the room would literally react with big eyes and start moving for the door. It’s a soundtrack that takes getting used to for sure. I did not think the human body could make those sounds! Apparently the stomach is a pissy little monster that does not like prolonged naps or food deprivation and it gets very, very mad!

So 5 days have gone by with nothing to eat but ice chips and popsicles and sherbet and some chicken broth. At this point you really are not hungry anymore, but know you need to feed the awakening, screaming beast.

Now comes the really nasty part. The newly configured colon starting to work again and learning its new job. Or better said, me learning how to deal with it learning its new job!

The first thing that passes through you is dark green/black gastric juice. This “juice” will burn your anus like you have eaten habanero peppers! Though liquid, it will feel like you are passing a watermelon. There is sound and fury and pain signifying nothing!… but a teaspoon of the above mentioned. This is exciting for all. The staff will come look as well as the doctor if present!

WOO HOO now you get to eat mashed potatoes or creamy soup! And tons of jello of all flavors and colors and squiggly shapes (or was that the drugs?) I don’t think they made me green dinosaur shaped jello did they? I’ll ask Amy.

Then gas and liquid food starts passing through. Push the button, push the button!!! Now the pain from your incisions is coupled with the new pain of the colon starting to work. OMG! Just shoot me now!!! Luckily my pain contraption fit through the bathroom door and was with me during these trying times!

Another lovely side affect is AIR! Remember the air they had to pump in during the surgery to be able to see and maneuver? It now is trying to escape from your body with nowhere to go. It’s just in your cavities, your shoulders, your abdomen, pushing on your organs, making your BP go way up. Any recent injury you have sustained, the air will find! Just before the surgery, I tripped over my blind dog and landed on my left shoulder. That shoulder is where the air wanted to go and I was screaming! Push the button! Push the button! Amy had to squeeze my shoulder constantly whenever I got up to walk! And especially after I had eaten even yogurt! This sensation will last for 2 to 3 weeks after the surgery. I took pain killers for the “air pain” more than the actual incision/colon pain once I got home! Gas pain/air pain is what will make you truly uncomfortable in the first few weeks. Most people say they have pain in the armpit so be prepared.

Speaking of air; taking a deep breath or yawning will be painful for a month or so if you have the left colectomy. In order to release the transverse colon from the spleen, (splenic flexure,) the lower left rib cage is also released to float around at will. This will press on your left lung and make any deep breaths or sudden movements evil! My left rib cage sticks out way further than my right now.

More than a month after the surgery, my daily activities are this: Wake up. Water plants. Go back to bed. Wake up. Eat Cheerios. Go back to bed. In 45 minutes you will be on the toilet. Liquid BMs and pain radiating from your anastomosis to your knees will make you shake and almost cry. Wiping your anus will stimulate it to relax and then produce more liquid. You will spend 10 to 15 minutes on the john at a time and it will be very painful. Make sure you have lots of toilet paper!!! But you must try to get up from the toilet as fast as you can and not sit there due to irritating the levetor muscle. This muscle will spasm and cause more sciatic pain.

Eat mashed potatoes, rice, eat scrambled eggs, yogurt, jello.

For 6 weeks you really have to be careful. Fiber will cause awful gas pain, stay with the mashers. Don’t even sneak a bite of chicken or meat, or you will suffer. Fish and rice is the easiest to start with. Even one of Amy’s fabulous veggie omelets kicked my ass at first.

Everyday is different. I am on my 6th week since surgery and have just this weekend left the house for the first time! We went on a road trip to Austin. It was so great to get out! We had a fabulous time!

But! You need to plan rest stops. Wear a depends under garment just in case. Remember to rest. AND MAP OUT THE RESTROOMS EVERYWHERE YOU GO!

The more you introduce normal food, the more the colon has to relearn and then train you on how it will react to the food. You are a slave to your colon still. This is a recovery that cannot be rushed and I cannot stress that enough! Any feeling down there can mean a run to the bathroom. Your brain cannot differentiate between passing gas or a bm so you just need to get to the restroom. You may have nothing happen sometimes. This however is better than the other way around!

Always go when you feel something. Sometimes you will deliver “jelly-fish,” a very thick mucus, which is clear. This is normal. Unnerving, but normal. After a while you will learn to know the difference between what is a real need to go and what is not, but it will take 6 to 8 weeks! I thought I had everything under control at 6 weeks and then had a horrible accident right here in my house. I almost had one at a friend’s going away party. Don’t be surprised if you don’t ever want to leave your house! This is normal until you get control.

Another thing is driving in a car. The seat belt and every bump in the road will hurt your incisions like hell. Clothes hurt. Just stay home and stay naked is what I did.

I am a type-A personality with an incredibly active job and was physically in great shape going into this surgery, but it will still take a while to recover, so be a very patient patient!

If you have a desk job, you’ll be okay to return to work in 6 weeks, if you stand all day and lift big computers, 8 - 9 weeks is more in order.

Take vitamins, drink water all the time! When you introduce fiber to your diet at week 6, be prepared for gas pain. Take Gas-X or Beano and save yourself lots of pain! The fiber will help your bms become more solid…or not. This is a delicate balance. Your first solid bm will make you jump for joy and call your spouse to come look and she will. She’s been with you this whole time and wants to see all the progress too.

There are times when you will feel fine.
There are times when you feel bad and need to sleep for days.
There are times that you have strange pains in different places.
Just listen to what your body needs!

My problem is that since my recovery wasn’t about having something like a broken leg or arm with a big, visible cast, I thought I was fine. I tried too much too fast. Then my body said F–K you! I started listening, sleeping and healing. Everything that has been in place in my body for 45 years has been cut apart and rearranged!!!

I can’t stress this enough. BE GOOD TO YOURSELF, LISTEN TO YOUR BODY, IT WILL BE LOUD AT TIMES AND BE PATIENT!!!

Lessons:
Push the “Bliss” button in the hospital and walk a lot. Sleep whenever your body tells you to. Get to the bathroom when you feel anything. Don’t eat fiber or red meat for 6 weeks. Don’t smack your belly against any counters. Don’t lift anything you can’t throw. Drink lots of water and more water. Sleep and more sleep. Do read great books. Talk to friends you have lost touch with. Write thank you letters by hand to the hospital staff and friends and family who have been keeping in touch or sent flowers or cards. You have time for this for once. Take time to smell the roses in your yard. Pet your pets who are wondering why you are on their bed! And thank your spouse who has taken such wonderful care of you for weeks! And never trust a fart!!!

Week 8:
Have had three accidents this week. Could not make it to the bathroom in time!!! And we have three! No waiting!!! This is horrible! A terrible mess and has made me cry. I am just unconsolable and have to go back to work in a few days! I ate a big juicy steak for the first time in six months and that was a mis-”steak”! Don’t do too much fiber, digestive enzymes or red meat too soon. Pork ribs and chicken and bacon seem to be fine. ( I am a BBQ chef) Chew everything 30 times before swallowing for sure! Or go back to yogurt and mashers and scrambled eggs if need be… Wait a little longer for red meat!

The Doc said six months to a year before really getting form and function under control. I did not believe him! Now I do!
(excuse the pun)