Before my surgery I tried to research and educate myself as much as possible so I wouldn't have any horrible surprises. I wanted to read the good and the ugly so if anything weird happened I could rest assured that it had happened before and I will be ok. Nothing can really prepare you for a surgery though, because everyone is so different. I wanted to list a few things...some good and some bad...that came as a surprise to me.
1. I didn't know how emotionally draining this would be. Yes, physically it has been rough, but the emotional healing has been very difficult - if not harder than the physical pain. Not being able to do the things I love, feeling like I am being a bad mom and bad wife. It really takes a toll on you. Seeing myself in the mirror with my scars and ostomy bag is still taking some getting used to. Somedays I couldn't look at myself. But It DOES get better. It just takes time.
2. I didn't know how TIRED I would feel. My doctor said I needed 6-8 weeks. Sure, I thought. That won't be so bad...I thought I would feel better way before that. I thought it would be like after you have a baby. Sure you hurt, but you can still move around and you get your energy back fairly quickly. Not this time. I was unaware of just how exhausted I would be. Somedays I could barely get out of bed. I need to nap quite a bit as well. I am looking forward to getting my energy back someday!
3. I wasn't aware of how nauseaus I would be. I thought once I was given the OK to eat, I would want to. This hasn't been the case. Food has been my enemy and I have had to force it down. I'm not sure why I am so nauseous all the time, but it's no fun.
4. I didn't know I would lose so much weight. I think the whole nausea thing is the blame for this one. Since I have to force myself to eat anything my weight has dropped pretty fast. In 6 weeks I have lost 20 pounds. I can't say I am totally disapointed in this, as I have lost the baby weight and that makes me happy. But feeling sick and that being the cause of it is no fun.
5. My colorectal surgeon should add "plastic surgeon" to her title. I have a really great surgeon. She is very much a perfectionist - which is what you should be when you are a surgeon! My incisions look pretty awesome. They are healing well, they are clean straight perfect lines. She really did a great job putting me back together. :) Luckily I was able to have the surgery lapriscopically. Now with the internal stitches and the skin glue they use, all the marks on my stomach are healing so well. Years from now I don't think they will even show much. I have one large incision at my bikini line (kind of like a c-section) One line on each of my sides, an incision in my belly button, and the hole from my drain, and of course the hole from my ostomy. My stoma/ostomy site is pretty small which is good, so that should not be a large scar after they close it up during my second surgery.
6. I didn't know how painful this would be. I would love to be super positive for anyone who might be about to go through a j pouch surgery and say it wasn't that bad. But sorry, this has been rough. It has been the hardest 6 weeks of my life. I has been very painful. However, it has been getting MUCH better. You just have to be patient with your body. It needs time. And it does get better with time.
7. I didn't know how lonely I would feel. I have wonderful friends, family and co-workers. They have been there for me and have been absolutely amazing. Especially my husband, Phillip. He has taken on the role of not only being my main care-taker. But he works full time, does all the housework and takes care of all of the stuff I can't do for Elise. He lets me sleep in and wakes up with her in the middle of the night. He has been truly amazing and I am so grateful to have such an amazing husband. Even though I know I have people there for me, I still can't express how lonely this process has been. I don't know any new mothers in their early 30's who have had colon cancer and who have gone throught this procedure. Every new pain or strange feeling is scary, I don't know if I'm normal or if something is wrong. I don't know what to wear to cover up the ostomy bag, I don't know what to eat, I don't know if the physical and emontional feelings I am having are normal. I wish sometimes I had someone to talk to who has been through this same situation. Just to have someone to ask questions and to tell me, it's normal and that I am going to be ok.
There are a few more things I am sure I will think of that I can add to this later.