These are the things I learned firsthand having just recently come out of a total proctocolectomy. Remember, I’m not a doctor. :-)
1. Don’t be surprised if you’re an anxious mess--your emotions will likely be all over the place. You will second guess your decision to have surgery multiple times a day. You will allow your mind to go to those worst-case scenarios. It is normal, and I found that the more I tried to fight these emotions, the worse they got. If you are having a difficult time coping, let your medical team know--they can’t help you if they aren’t aware of what you’re dealing with.
2. Therapy is amazing. I highly recommend it. I am lucky to have a gastroenterologist whose office staffs a therapist that treats IBD patients. Ask your gastroenterologist if his/her office also staffs a therapist--you may be surprised to find out that they do. If not, there are other therapists out there that can help, or perhaps even a pastor/priest. It is nice to vent to family & friends, but having a professional to help you work through your emotions is super helpful.
3. Be patient with yourself. You are about to embark on a surgical journey that will alter your body. It is normal to want to do a lot of research, but be careful that you aren’t making the mistake I did & researching every single thing that could possibly go wrong. I do recommend researching what a stoma looks like & how to empty & change an ostomy bag, however. I am glad that I looked these things up so that I had a general idea of what to expect. Also, it helps to do a little research on what things you should & shouldn’t eat after surgery while your stoma is still healing & changing in size.
4. If you are working, preparing for a leave adds an extra layer of stress. Just roll with the punches on this one--I stressed myself to the max regarding my leave & for no reason, as I was notified that my leave was finally approved one day after my surgery. You will feel guilt about leaving your job duties behind while you’re gone, but you can’t let that rule you. If your co-workers were in the same boat, they would likely elect to put their health first, too.
5. Rally the troops. I mean it. ASK FOR HELP. If you have friends & family nearby, allow them to help you. Often times they want to help, but don’t know how, so kindly ask for whatever it is that you feel you will most need help with while you’re in the hospital recovering--housework, errands, caring for kiddos or pets, etc. I promise, you will be super surprised at the amount of support you will get if you just ask for it. If there are people that would like to provide you with meals, there is an awesome website called MealTrain.
6. If you smoke, stop as soon as you can. Smokers are at higher risk for blood clots. Full disclosure: before my surgery, I was a smoker. Smoking was a terrible habit that I used as a stress reliever. Trying to quit during such a stressful time was very difficult, but I managed to finally do it eight days before my surgery. My co-worker was also quitting with me, and he bought me a bag of Dum Dum lollipops. Every time I craved a cigarette I instead ate a Dum Dum. Sounds silly, but it worked. I also met with an ostomy nurse before my surgery & she gave me something called an Airlife Volumetric Incentive Spirometer to begin practicing breathing with. If you aren’t able to meet with a doctor or nurse before surgery to obtain one of these, you can purchase them online & they are rather inexpensive. It also helps to know how to use it, as they will push you to utilize one several times a day while you are recovering in the hospital post-surgery.
7. Pack well for the hospital. Bring lots of things to entertain yourself with while you’re recovering, such as books, magazines, puzzle books (crosswords, sudoku, etc.). I also brought my laptop & DVDs that I could watch on it, as my hospital room didn’t have many TV channels. I don’t recommend bringing a lot of clothing--just some comfy socks, an outfit to go home in, and if you want to bring PJs, I recommend forgoing two piece PJ sets & instead bringing a few nightgowns--make sure they are nightgowns you don’t mind parting with if you get anything on them. I also brought my toothbrush & toothpaste, my own shampoo & conditioner & my cell phone charger, as well as a pillow from home just for comfort.
8. Bring your own cheering section. The morning of my surgery I asked my parents & a few close family members to come to the hospital to be in the waiting room. Even if you cannot see them during surgery, just knowing that they are there pulling for you will bring you a lot of comfort. Also, if you are religious, ask your pastor/priest to come & pray with you before you go in. This also brought me a great amount of comfort during such a scary time.
