Lindsay, I'm glad that maybe I can help. All of my markers were in my descending as well as sigmoid colon. My husband had to give me big bag warm water enamas every 4-5 days, too. I eventually had little balls come out of me and it was extremely painful. It took a long time in the bathroom for me too, and I was exhausted afterwards. I also had to go to the hospital 3 times to be disimpacted, which is terrible. I've been thru all of the meds, too, and they didn't work. I would bloat up and be gassy, but still unable to have any movement. Same with fiber. I went thru this for a year, and felt like it was taking me forever to get help to get me well.
I don't want to sound discouraging, but you have to try and eat and gain some weight. I don't know of many doctors that will do a total colectomy for patients when their weight is already so low. This is serious surgery, and afterwards you'll lose alot of weight just from your colon being removed, and then uncontrollable bowel movements. I went about 15 times a day at first, but I've read that some go up to 25 times per day. My doctors said that you need to drink at least as much as you lose during your bowel movements. What I'm trying to say, is losing weight is uncontrollable and it will happen without trying. You don't have the weight to lose and still be healthy. I have struggled with low iron and low blood pressure since having my surgery. Your whole life changes fast and you'll get to know your body well, but it takes time, and at least a year for everything to be working together. You're right, you have to eat wise after a total colectomy. My stomach has shrank and I have to eat small meals frequently. I was released from the hospital after 4 days and doing great. The next day, I got really nauseous and couldn't eat anything. I had to be readmitted for another 5 days and the doctors made sure that I was eating before they would release me. It was very difficult. Before having this surgery, you have to try and be in the best physical shape that you can be, because alot of your stamina will slow down and it takes alot of energy to get better.
You are so lucky to have a little girl. I have 3 boys but they're older now. My youngest is 15. Anyhow, for six weeks you cannot lift over 10 pounds and it is extremely important that you do this. At first, I couldn't even lift the 4 pound bottle of dishwasher soap and had to work up to it. You also cannot bend at all. Again, I don't want to scare you, but for the first 2 weeks I couldn't even wipe myself. My mother and husband constantly helped me. I was lucky to have them. I've been home for 8 weeks and am finally going back to work. It'll take the first 5 weeks to even start healing and feeling human again. I would really recommend holding off on school for a semester after having surgery. You will also need help with your daughter at first, because there is no way that you'll be able to hold her or lift on her. You won't be able to take care of her on your own. Can I recommend something? I had a nursing student come to my house and help out a few hours each day. She did anything that I needed help with and didn't ask for alot of pay. It's good experience for them, helps them with earning money, and helps you alot. You'll learn to love hugging your pillow to your belly and will be afraid of anything touching it at first. Your doctor will also tell you that having a motility disorder and a total colectomy, you have to walk alot for the rest of your life or everything could stop working again. At first, you have to push yourself to walk so that you won't get gas pains. They hurt and you'll want to walk.
My doctor tried to do my surgery lapro but it didn't work, so I had open surgery. Although lapro scars heal lots faster, you will still go thru the same. Lots of gas, uncontrollable movements, and soreness. The first 3 weeks you might as well figure on going nowhere as you'll have lots of accidents. I had to wear diapers for quite a while. Funny, where my lapro cuts are, are where it hurts at times the worst. Also be aware that total colectomies sometimes end up with permanent or temporary illeostomies, too. Sometimes people end up with a temporary illeostomy and have to have surgery 3 months later to close it. Your surgeon will go over all of the possible outcomes with you. He'll tell you too, that whatever symptoms such as gas, bloating, and cramps that you have pre-surgery could exist after surgery. I have alot of gas yet and cannot help it.
My doctors have told me that I can eventually be able to eat anything, but I'll always have to chew, chew, chew. It's important to chew your food. They told me that after every forkfull of food to put the fork down and chew. Then pick up the fork and start again. The reason for this is that your colon will be gone. If you don't chew properly you could get an obstruction and will cause you to have surgery again.
My total colectomy has been a gift, but it is a lifestyle change. You will eat wise afterwards, but you have to find a way to eat now, too. It's the most precious thing you can do for yourself, your health, and your family right now. Your body can't afford to lose much more weight.