I'm 17 and about to start college in the fall. I am a girl. I'm having the j pouch surgery on june 19 because my colon is basically dead and Im always bloated and sick and I vomit all the time. I was really constipated but i have an appendicostomy so my colon is mostly decompressed. anyways I am so scared and I dont know what to expect. Will I lose a lot of weight? what will the scar look like? how many times can I expect to go to the bathroom? will I need to wear diapers? Is there any chance that a year from now Ill only need to go two or three times per day? how long does it take to recover? what is it like to have a temporary ileostomy? what are the chances Ill be incontinent? how about having babies? will that be harder? will sex (in the future) be painful? thanks for any and all info

Diana, You are right to have so many questions before surgery. I have to start out by saying every perso is different. We can only speak from our own experiences and I would encourage you to ask these questions to your colorectal surgeon, Gi doctor or sometimes you have to go through their nursing staff. That bein said, I will answer what I can answer and maybe someone else can pick up the ball. Yes I did lose some weight after surgery. After surgery, it is like your gut has been sedated, so you have to wait for it to wake up before you can start on liquids and then progress to soft food and then back to solid foods. In the meantime, I got my nutients from the IV. Honestly, I did not experience any hunger pangs. Of course I had my surgery 16 years ago and for different reasons than you. I have polyposis which is genetic and means I was destined to get coloncancer. So to prevent that they take your colon out. Works for me. Bein that I was 38 at the time, I can not address your future preganancy questions or being able to have babies. I can say that I have a normal sex life. You can expect to be weak after surgery. When I had my surgery 16 years ago, they admitted you the night before. You had an education class. They told you exactly what to expect. They showed you the tubing you would have coming out of your body after surgery. You got to touch it an feel it. When I woke up after surgery, I knew exactly what to expect. When my son had his surgery at age 21, he checked in on the day of his surgery. No education classes anymore. My husband was by my side after surgery. They had me up and walking 24 hours after surgery. I was as weak as a kitten. On the frequent bm front, there is good news there. There is medicine that you can take that slows the number of bm's and other tings that thicken the stool . Your Jpouch will learn it's function and learn to function like your colon did. It just takes time. You are wise to have your surgery at the beginning of summmer. That gives your body as much time to heal as possible before school starts. I have never been incontinent. I do have more bm's than the normal person but I don't have colon cancer. I would encourage you to have family that can be with you in the hospital. They can be such help phyically and mentally. Oh I was working at the time and when I went back to work I started out part time and worked my way back to full time. You know what one of my questions before surgery was to my doc? Would I still have a belly button. They tole me I would and I I do. Ther are no silly questions. It helped me tow rite my questions down befoe I met with the surgeon. So when you think of questions write them down. Thinkof you and your doctors and nurses as a team. You are all working toward the goal of you being healthy and not having to feel so bad. So bye for now. JJ

Diana,

Sorry things have been so rough for you. It sounds like you need to take some sort of action - bloating and vomiting all the time is no way to live, huh?

As for your questions:
- Will I lose a lot of weight?
You will lose weight, but how much depends upon how sick you are around surgery time. I think those of us who lost the most weight were really sick prior to surgery. 10 pounds is probably a good guess. But after a month or so with the ostomy you will probably gain some back

- what will the scar look like?
That totally depends upon your surgeon. You should ask him/her. A lot of people end up with a long vertical scar - not the best scar for sure. Those who have laproscopic surgery end up with about 5 small incisions - one of which is an inch or two long. Some people here have had scar revision done by a plastic surgeon after the fact
- how many times can I expect to go to the bathroom?
After your j-pouch is reconnected (the ostomy is "taken down"), you can expect to go a lot for several weeks (10+ times/day and several times at night). After a period of time - usually 3 months or so - that will decrease and average out to 3-5 times / day and once at night
- will I need to wear diapers?
Hopefully you won't need anything like diapers at all. A lot of people have some incontinence in the hospital or for a couple weeks after the takedown. It is rare, but some people have to use protection all the time
- Is there any chance that a year from now Ill only need to go two or three times per day?
If you are having a traditional ileal-anal j-pouch (ilium to anus), you can expect 3-5 as an average. Colonic j-pouches (for those who keep part of their colon and rectum) and ileal-rectal j-pouch averages are a little different. I think colonic j-pouches average less times/day and the ileal-rectal is slightly higher
- how long does it take to recover?
I think most people take off work for 4 weeks. I was off for 2 weeks or so and worked at home for a week prior to going back in. So, it varies
- what is it like to have a temporary ileostomy?
The ostomy isn't that bad. Just educate yourself and be prepared. Make sure you have some good ostomy resources available to you (nurses). The worst thing about it is the peri-stomal skin that can get very irritated. At the first sign of a problem, make sure and seek help. Once you know how to care for it and what works easiest to change the applicance, it's not really that bad
- what are the chances Ill be incontinent?
I'm not sure the specific odds, but they are very low
- how about having babies? will that be harder?
You can aske the ladies, but there are quite a few who have had successful pregnancies and birth. I think there are some complications from the surgery that can make things harder
- will sex (in the future) be painful?
Can't answer that one for you :-) I think I did read a recent post where some of the ladies said it was a bit more painful initially.

You are choosing the very best time to have your surgery. I am a teacher and had mine in July (both the 1st step and a year later, the takedown). I waited a year in order to have it done in the summer. Think of all of this as a trip. You will be experiencing things very new to you and will be learning so very much about your wonderful body and how it can do things in a number of ways....not just one way! The ileostomy is different, to be sure, but has its really strong points! No more urgency! Now, you will be able to eat and drink just about everything you like.....as long as you CHEW!!!! You will learn a whole new skill...how to apply a wafer/baggie so that it lasts as many days as it is meant to last. This is trial and error for all of us. By the time you go back to school you should be well on your way to knowing what works best for you. Keep laughing! Things happen which seem just horrible.....looking back, they were hilarious! Keep a journal everyday. Be honest when you write. You will read it years from now and realize how far you have come. You are about to become really healthy again. Things will work differently, but efficiently and well. Keep sharing!

you might have to try several different styles/brands of ostomy appliances to find the perfect one for you,i had a lot of trouble with leaking flanges that would not seal up properly.i discovered early on that the stomahesive powder,if used regularly,will prevent any skin irritation problems.it will also help you get rid of any irritation if it develops before you use the powder,it is a wonderful product.