Posted 9/25/2012 5:23 PM (GMT 0)
By January you should be fine. My reversal was June 26 and I started training for a half marathon in August even though I had been in bed for 1-1/2 years. There will be a roller coaster of ups and downs for the three months but nothing that should prevent you from going to school. My 20-year-old son has uc. This is what I would want him to know before the reversal:
There are exercises you can do before the reversal to prevent or decrease any leakage or incontinence. By January this won't be an issue but these exercises will help shorten your recovery time. Pretend there is a stone in the upper part of your rectum. Squeeze around it as hard and as long as you can. Release and repeat as many times as you can stand it. I got a little fanatical about this because I did not want to end up incontinent. I did between 30 and 90 of these a day before takedown. I learned about this from someone here and then my colorectal surgeon also suggested it.
Kegel exercises are also priceless to strengthen your pelvic floor muscles and make sure you do not develop urine leakage right after the surgery or 20 to 30 years down the road. Pretend you are holding your urine in for about 10 seconds and release. Before the surgery this exercise will be easy to do. After the surgery, it will take about a week before the pelvic floor muscles respond the way the way they use to.
The first week you may want to wear Depends just to feel safe. Sometimes being continent just means how fast you can race to the bathroom.
After that period is over, you may want to wear a panty liner until you feel confident about your control. As time goes on there may be bumps in the road when you resort to a Depends for a day or two, mainly for confidence after eating a food that sped up your system too much. Some people will wear panty liners for months just to feel safe or to take care of small leaks. This goes for guys too. I only use the bathroom four to six times day which is a little less than most people.
If you time your eating, you should be fine in classes. If I eat an hour before I go to work or to run, then my bowels are empty before I leave. I like liquid protein smoothies when I am in a hurry. My body processes it in about 30 minutes so I don't have to worry about needing a bathroom later. My son is rarely embarrassed and he had no problem telling professors why he needed bathroom breaks during class. He said he received support from all of his professors. If you want to be more discreet you can have the student Office of Disability send an e-mail alert to your profs. Some people have absolutely no problem with not going to the bathroom for hours regardless of what they eat. Each of us is different so you will have to experiment to find the right timing. Believe me dealing with the j-pouch may sound complicated at first but it is truly wonderful to be uc free.
Walk as much as possible. I was up and walking four hours after the reversal. I walked after every meal and before bed. Walking helps your bowels wake up and stay healthy.
Many doctors tell you to eat anything you want after the reversal but that definitely did not work for me. Stick to as gentle a diet as possible for at least the first month. I used the Mayo Clinic Low Residue Diet as a guideline. Any time I strayed I had major problems. For me mushrooms and anything with a lot of animal fat or sugar caused problems by creating blockages or speeding up my system too much. Cream, butter and fatty cheeses are included in the animal fats. Pizza can be very painful during the first month or two. Raw fruits and vegetables should be avoided. Nuts and seeds can also cause problems in the beginning weeks. After a few months, your body adjusts and you can start adding in foods that were previously a problem.
Alcohol speeds up your digestive system so partying is possible but there may be a price to pay with extra bathroom runs and loose bowels. I was told by a more experienced j-poucher that your j-pouch's alcohol tolerance will increase over a period of two years. Edible marijuana (brownies, cookies, marijuana butter, etc.) apparently does not negatively effect your digestive system according to my son. I am very anti-marijuana but I have read three reputable marijuana studies that found a correlation between light use of marijuanna and decrease of intestinal inflammation. I am still skeptical but many people with uc and crohn's swear it works and slows down the digestive system.
Sex-For men, swelling around the nerves of the penis may cause temporary changes in having an erection. It may take a few months before erections are as firm as they used to be. If you experience any other sort of sexual problem ask your surgeon for a referral to a specialist. There are new treatments for sexual dysfunction that are very effective for j-pouchers. This is rare so do not be worried, just be informed.
The dreaded butt burn or monkey butt-Some people never get this which just amazes me. I know one j-poucher that does not even believe it is real! My second week, I developed terrible butt burn. I have extremely acidic output anyway so I started taking prescription Questran that binds up the extra acids. Other priceless tools were prescription topical Lidocaine, and over-the-counter Calmoseptine and Balneol. I bought a bidet because many recommended it to soothe butt burn. It did not help me at all. A little Balneol on toilet paper cleans better than flushable wipes and soothes the pain. Calmoseptine prevents acids from causing more damage and also soothes. Both products are available at pharmacies. During the worst times, I would place a small gauze pad with Calmoseptine on the effected area and leave it there. I would also use a panty liner just to keep my underwear from getting embedded with Calmoseptine. It is hard to get out of clothing. A bath with 2 cups of Epsom Salts dissolved in it can give you heavenly relief.
Medicines and vitamins-Some of us have malabsorption issues because our system is too fast to absorb some vitamins, minerals and solid meds. I take a liquid vitamin/mineral supplement. If you ever experience unusual fatigue, have your primary care physician check your vitamin and mineral levels, especially Vitamin D. I had to experiment a little to find the right supplements. The first one I tried made me close to incontinent. I used medicinal patches for prescriptions until my system slowed down enough to handle the regular pill. Any enteric-coated pills or extended release medicines may not be fully absorbed.
Steroids-Tapering off of steroids after surgery may make you feel depressed or not in control of your emotions. Expect some irrationality to happen and warn your family about this possibility so they do not take your behavior personally.
Coping with the emotional rollercoaster-There are days that will be absolutely wonderful and there are days that will be very discouraging. Try and focus on the fact that the bad times are temporary. Come here and share for support. Some guys have a tough time venting, but the guys who are here are extremely supportive and non-judgemental so feel free to share any frustration or worry. There are many j-pouchers in the ostomy forum. There are also a lot of guys your age at j-pouch.org. There are guys there that do karate, competitive sports, and even handle very tough construction equipment. Their success stories are fabulous.
Post-surgery depression and posttraumatic stress syndrome-Some people will experience this on and off for a few months. If this does become an issue you want to address, your colorectal surgeon should have a list of doctors who specialize in post-surgical depression and PTSD. This does not mean you are crazy or that you will automatically be put on anti-depressant or anti-anxiety drugs. Most people seem to be given coping exercises that help them recover faster. For many people, the anti-depressant and anti-anxiety medicines helped them return to a much happier and fulfilling life.
Individual recovery rates and experiences vary wildly. It is best to measure your improvements in months, not days or weeks. It is very important to get out of the house and be active physically and socially.
This may be more information than you really wanted but if you were my son I would want you to be prepared for anything so that you feel in control and can have the best recovery possible!