In 2008 I had a total colectomy following my colon cancer diagnosis. They removed my colon and about 4 inches of my ileum, but were able to leave about 3 inches of my rectum. The procedure was called an ileo-anal anastomosis. These are questions that I wish I had asked my doctor before having my total colectomy. Not that any of them would have changed my mind about the procedure, but I would have liked to have been more prepared for the after-effects. (Keep in mind I already knew the possibility/ probability of higher frequency and urgency after the surgery).
In no particular order:
1. How can I avoid dehydration?
-I still have doctors tell me that I shouldn't be dehydrated. But then I go to get blood work and they can barely hit a vein because, in their words, I am too dehydrated. Not to mention I have symptoms of dehydration such as extreme thirst, fatigue, and headaches. Dehydration is a risk after a total colectomy and needs to be discussed with your doctor. It is good to know how much water you should be drinking daily (which might be more than the general public) and if it is necessary to also include an electrolyte drink in your daily regime.
2. Will I need more fiber or less?
-I have had a hard time getting a good answer for this one... some doctors have told me to avoid fiber, others have told me to increase my fiber. So this is something to really discuss with your doctor. I think most would say more fiber (sometimes 25-35g a day), but again, something to ask your doc.
3. How can I avoid blockages?
-Intestinal blockages can be a serious issue after surgery. They can lead to more surgery and removal of more intestine, but worse, can result in ruptures and infections if not treated. Since your small intestine is now trying to take on the role of the large intestine, it is holding more waste that it was meant to. If you are dehydrated you will be at a higher risk for blockages. Fiber can also play a role.
4. When can I start exercising again?
-Exercise is very important after an abdominal surgery, however exercising too soon can cause hernias or incision tears, so asking your doctor about when you can start is important. Also, always listen to your body... if it hurts, stop and consult your doctor.
5. Is there a certain diet I should follow?
-Certain foods can cause an excess of air bubbles in the gut that can be very painful. Things like onions, raw veggies, beans, and dairy sometimes need to be avoided in your diet. But everyone is different and some can tolerate those foods while others can not. It is best to gradually try new foods and test how they affect you. I had to avoid certain foods at first but now I can eat mostly anything (though raw veggies still tend to give me problems).
6. Will I have a hard time absorbing vitamins and minerals?
-Vitamin B12 absorption occurs primarily in the ileum, so if any of your ileum was removed this level could be low. It is important to ask your doctor about checking your levels. Also, depending on whether or not you are dehydrated, you may also develop low levels of magnesium and potassium, among other things. Vitamin D is especially important for preventing bowel cancer, so having enough in your body is extremely important if you have already received a colon cancer diagnosis; Vitamin D can become low after a colectomy. I personally have been told to take 10,00IU of VitD a day based on my levels, as well as weekly Vitamin B12 shots.
7. Will I need to take any supplements?
-This really goes with the above question. If your doctor tests your vitamin and mineral levels and they are low you will need to discuss possible supplements with him/her. If the levels are low enough they may suggest an IV, but for most this will not be necessary. There are many capsules and even liquid vitamins that you can look into taking.
8. What is the possibility of ending up with an ostomy?
-Going into a colectomy surgery the goal is to resect and reconnect, not place an ostomy, but it can happen; it did in my case (I had a temporary ileostomy). In the same way, after a colectomy you don't expect an ostomy, but it can happen, such as in the case of a blockage or recurrence. Discuss this with your doctor and ask any questions you may have.
9. How will this effect my energy level and how can I help that?
-This might not be an issue for everyone but it has definitely been an issue for me. I sleep more than I should and my daily energy level is low. I wish I had discussed this with my doctor so that maybe I could have avoided it. It is something I would suggest asking about. Low energy can sometimes be contributed to low Vitamin B12 levels.
10. Are there organizations that offer support for people with colectomies?
-There are! It took me a couple of years to find them but they have been so helpful. The Colon Club is the main one, their forum and Colondar have been so helpful since my surgery. I would suggest asking your doctor as well... he may know of local groups in your area. Also, there is always Google :)
There are also certain guide books online that are helpful, such as THIS ONE.
*Obviously I'm not a doctor, so this is not to be taken as medical advice.