While there are many Dr. related medical items to follow when dealing with the J-Pouch recovery, here are the nitty-gritty personal-experience things I wish I’d known ahead of time:
I can only speak from a male’s perspective as well, because there are some very sensitive items related to the male’s libido and the genital area that the J-Pouch operation impacts. The J-Pouch operation is a two-step process, where the time on having an Ileostomy (see picture at left) differs from person to person. Mine was a 2 month transition from the initial operation and I only had to wear the bag for two months. They call the reconnection a “take down process” in the terminology used.
1. You will still have mucus coming out your anus, even though the doctor will tell you that nothing is going to come out there, you still have to check and wipe as necessary, residual fluid will find it’s way out, so don’t be alarmed.
2. The pain medication right after the first operation is wing dinger, it hurts to move around. If you have relatives or a loved one to help you, that is so important.
3. More important than anything else is the fact that you have to have the replacement bags and the fittings ordered and figured out on who is paying for them, whether your health insurance covers them or not. The J-Pouch surgeon should have nurses assigned to help transition the process of changing the bag and getting in touch with the re-supply. When you are on pain-killers, all of this is a blur and fuzzy and this info is critical to ensure you change the bag in a timely fashion.
4. Ileostomy bag irritation is inevitable at the point where the bag connects to the stoma; there is a powder that is used to help shave the excess stomach hair that helps calm the irritation. However, the patient will soon realize that they can eat things that they could NOT eat before, like hot wings, etc. Do not go crazy and start eating past foods with high ACIDITY content. The fluid that comes out of the stoma during a bag change can STING so bad that it will make you yelp in pain. I learned this the hard way. You should powder the area around the stoma and the connection, dry shave and change the bag as quickly as possible. Having a lot of wet towels and keeping the changing process clean is a must. If you do not shave you can have skin literally ripping off when you change the portal area and the bag. I had to go to the doctor about this because the acid from the bile was burning my skin.
5. Wearing clothes that are baggy doesn’t hurt; however, anything that is see-through can be uncomfortable.
6. Noise from the bag filling up with gas and liquid will happen. You will have to let out the gas once in a while when you feel the balloon effect happening. Could be embarrassing for some, but not really a big deal.
7. THIS IS VERY IMPORTANT: When emptying the bag in the toilet, if you are a male, at the toilet, do yourself a favor and place a good cushion of toilet paper in the toilet bowl BEFORE you empty the bag into the water, because splashing will occur and you could STAIN your shirt or clothing and a bile stain doesn’t come out easy. Placing toilet paper on top of the water first, greatly reduces the splashing of the bag contents. I learned this the hard way.
AFTER THE CHANGE AND TAKE DOWN
Here is where the REAL potential pain starts, because now you are really using your new J-Pouch. Critical pain management is mandatory if you do not want to go back to the doctor pleading for help. I am not kidding about this. I won’t go into pain management, but it is really something important, and that is why I’m bringing it up. Visits to the bathroom will increase three-fold. The amount of wiping on your rear makes everything feel like pins and needles, like glass being raked against your skin. The acidity from just regular eating will also increase the pain level. There are many products that you can use but here is what worked for me:
1. Calmodine is a good lotion to use, and has a thick consistency like a cream. I helps in small portions, however, it will not take away the pain and using too mu