Preparing for Colectomy - Questions on Bag Maintenance, Pain, and Recovery

In a little less than two weeks, I'm having my colon removed because of severe UC. I can't wait; I'm suffering so much.

I have some very basic questions on what to expect:

How often will I need to empty and change the bag?

Is it painful?

What should I expect my first month to be like?

I believe that most people change their pouch (bag) about once a week. This, of course, may vary depending upon how active the person is, etc. I sometimes can go longer than once a week. I am retired and not as active as I was when I was working. While working, I usually changed my pouch on Sunday mornings. A piece of advice: Take your time when changing your appliance. Rather than stand up while changing, I have found it more helpful to sit up in my bed during the changing process. That way, you can relax and take more time while changing, thereby assuring that the whole process will result in a more secure pouch change process. I experience no pain whatsoever related to my ileostomy. You may experience some pain or soreness related to the surgery itself or the incision healing process. The frequency of emptying the pouch is directly related to the amount of food you eat and how often you eat. I strongly suggest you not eat anything after 8 PM. That "rule" will definitely help to prevent leaking accidents while you are sleeping. Hope this is helpful.

Once the surgery-related pain was over (a couple of weeks), I had no pain and have not since (other than minor/temporary blockages discussed below).

As per the other post, emptying depends on amount and frequency of eating and drinking. Changing pouches/bags depends more on level of activity and heat (more in the summer, less in the winter...more when exercising frequently or swimming, less when more sedentary). I usually go through two or three a week, but I'm fairly active and live in central AZ. You'll want to change well after you have eaten or first thing in the morning when your remaining intestines are less active...you'll get to understand your body's rhythm as time goes by.

One really nice thing I re-discovered was being able to eat a broad range of foods again without discomfort. You'll need some time to discover what foods work or don't work, so I would start with easily digestible foods and smaller quantities in the beginning. For example, I can't eat much in the way of raw vegetables and need to chew really well. On the other hand, pasta, potatoes and chicken and seafood all digest easily. Once in a while the remaining pipes might get clogged. I use Senna-based laxatives (or wine) to get things moving again. In 32 years, I've only had one blockage that required a hospital visit for a "GI cocktail"...After that, I always keep some Senna (Sennakot or generic of same...can buy at the grocery store...generic is just as good as Sennakot and a lot less expensive) at home and take with me when I travel.

Waterproof tape (HyTape, Pink Tape or similar) is a must. I get HyTape online in canisters of ten rolls of one-inch width to "frame" the base of your pouch. A nurse should show you how to do that after your surgery.

It's all doable and you'll adapt quickly. Good luck.

We can understand your apprehension, but we can reassure you that you should do fine. The week of surgery will be rough, but they will offer pain medication when needed. They will have you up and walking the 2nd day several times. I had a pain medication pump, so if the pain was bad, I could push a button and get relief, but I rarely used it. I was discharged in a week, but I am almost 78 years old. If you are younger, you might go home sooner. My husband and sons were great taking over all the household chores for me to begin with so I could rest and focus on getting better. Be sure to take advantage of learning everything you can from the hospital's stoma nurses. They can teach you so very much about caring for yourself. Be sure to get the stoma nurse's phone number at the hospital. They are very good about answering any concerns you have after you go home. The doctor should let you know how soon you can go back to work if applicable. I was driving 1 - 2 weeks after the surgery. I was advised to make sure the seat belt was across the thighs and NOT over the stoma.

Emptying the bag is when needed. Stoma nurses told me if it was 1/3 full to empty it. They gave me a peribottle which you can fill with warm water and use it to flush out the contents of the bag. I usually flush mine out about 3 times a day, but this is a personal preference. You only change the bag and wafer about every 3 - 5 days, but some people do it once a week.

The surgery itself is painful, but after about a week, you will be up and about. I was told not to sit too long but get up and walk around when possible. You will learn as you go on and get comfortable with your life with an ostomy in a couple of weeks.

I found that meetanostomate is a fantastic website, and we all can learn from one another. We will be thinking of you when you undergo your surgery. Please be sure to check back here as you recuperate and let us know how you are doing. There are many experts here who have had their ostomy far longer than I, who will be able to help you navigate your way through living with an ostomy.

I was in exactly your position about a year and a half ago. My surgery and recovery went very smoothly. I had surgery on a Tuesday, and went home from the hospital that Friday afternoon. There was a little pain involved in the recovery, but it wasn't too bad, about two weeks most of that was gone. As far as bag changes go, my WOCN said I should be changing twice per week. It varies from person to person somewhat, I've had reps from ostomy companies tell me it's not unusual to only get two days out of a bag, I hear of people getting over a week. Normally I change about every three days. I normally empty about 8 times per day. This too varies somewhat between people, depending on diet, how fast your system processes food, activity level among other things. I tend to empty based on what I am doing, if I'm going to drive, or do work that'll require me to bend or squat a lot, I'll empty whether it's full or not. If I'm less active, I'm more likely to wait until it gets to the 1/3 to 1/2 full mark. It'll take you the first month to get moving well again, myself, I was back to work about 4 weeks after surgery. I wasn't full speed yet, but able to function pretty well. You'll be plenty busy that first month, figuring out what routines work for you, what appliances you like best, and how to go about getting those. If I can offer one piece of advice, try to get some starter kits from ostomy companies, and all the samples you can. This will help steer you to the ostomy system that works for you. There will always be someone here on this site to help if you need it. Good luck, if all goes well you'll be feeling much better soon.

Words of Encouragement from Ostomy Advocates I Hollister

Rozanskyism,

These are all wonderful answers to your questions. But as stated, each person will have a different experience. I apologize for the long post in advance.

How often will I need to empty and change the bag? -

Depending on if you're using a 1 or 2 piece system and depending on your diet as stated, will determine how often you have to empty/change the pouch. I have an ileostomy due to Crohn's disease and I'm assuming that since your colon is being removed, that's the type of ostomy you'll have. I use a 1 piece drainable pouch and I change it every 3-4 days. I empty the pouch anywhere from 5-8 times a day. A lot of members here prefer a 2 piece system where the wafer and pouch are separate and snap together. From what I've read, the wafer can last as long as a week before needing a change and you can alternate between drainable and closed pouches.

You will acquire your own method that works best for you on changing your pouches. There are several videos on YouTube on how to drain/change them and you can always ask here what works best for other members.

Is it painful? -

After my surgery, I was just sore. I had a morphine pump but the doc said the sooner I was off of it, the sooner I could go home. And with that type of surgery, a lot of air gets trapped in your body cavity. It takes time to dissipate through your skin and can be uncomfortable. It's kind of like a dull ache. The stitches for me start at mid chest and end just above my groin. I felt hunched over because I didn't want to rip the stitches and it will take time to get back to a normal posture.

What should I expect my first month to be like? -

Immediately after surgery, you will probably have a tube down your nose into your stomach and ice chips will probably be your diet for the first week. The second week, they will take the tube out and you will probably be allowed clear liquids or surgical soft food. When the doctor allows you to have solid food, chew your food up very, very well to avoid getting an obstruction or blockage. I learned the hard way by eating peanuts without chewing them up well. I had an obstruction and it was like rolling gas pains. You'll want to avoid any naturally fibrous foods like raw fruit/veggies for a while until your body heals and adjusts. I had surgery 23 years ago in the month of October and I was able to eat everything around Thanksgiving with no issue.

Allow your body to heal. Don't do any heavy lifting for a while. You'll be able to strengthen your stomach muscles slowly and carefully to avoid getting a hernia. You'll learn what foods agree/disagree with you and after a while, you'll see your output will slow down depending on what you're eating/drinking. Average meals go through me after about 5 hours now. Orange juice or beer goes through me after about 2 hours. But I love both so there's no way around that....lol

You might go through some depression and have a warped body image. I was in a slight funk for the first couple of weeks but I realized that I was no longer running to the bathroom with any sense of urgency where as before the surgery, it was every hour on the hour. I no longer have to take medication for my Crohn's and I am completely pain free. I was able to go back to work 2 months after surgery and that job required me to be on my feet 8-12 hours a day.

Please let us know if you have any other questions. Hope this helps.

Bain

Thank you so much for such a detailed answer!!!

I meet my ostomy nurse next Thursday!!!