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 much will ADD pain.
[Note from Jini: I would try Burt’s Bees Diaper Cream or Burt’s Bees Res-Q Ointment comfrey salve]
NOTE: Unfortunately, as so often happens, the company Burt’s Bees was bought out once it became successful, and the new owner is now downgrading the ingredients; they greatly reduced the amount of comfrey present and instead of actual leaf and root it now only contains ‘comfrey leaf extract’. So I went searching for something else that was just as good and I believe I found something even better from another company I’ve loved for a long time (still original owner!) called Herb Pharm. That can be found here Herb Pharm Original Salve
2. The real life-saver and pain-reducer is to stop wiping so much and start dabbing and splashing water to clean yourself. Slowly and carefully. Washing your hands afterwards is obviously hygienic and necessary; this small but important process will relieve 90% of the pain from the acidity. Also take things to help reduce the cramping and burning (like probiotics).
[Note from Jini: we’ve found it’s best to use Kleenex 2-ply, white, (nothing else added) tissue to wipe, but flash it under warm water first and then dab/wipe very gently. Use repeatedly until clean. Then apply salve if needed with a q-tip or your finger. For extreme pain around the anus, use a perineal wash bottle to spray warm water over the entire area until clean. Then dab dry gently with Kleenex.]
3. Take Probotics, and anti-acids. They are critical to making you feel better; also, Echinacea is also helpful. The doctor will state what you cannot eat any longer and I have stopped eating raw vegetables and things that might clog up the Pouch.
[Note from Jini: I don’t advise people consume antacids as they cause long-term problems by down-regulating the acids needed for digestion and preventing probiotics from colonizing effectively. Better to use minerals and alkalizing foods like JUICED green veggies and whey protein isolate shakes to calm acidity]
4. Spicy foods and drinking alcohol during the first year is just asking for unnecessary pain and cramping. It will almost feel like you have UC again. But the changes will be slow and you will start to feel the difference.
5. Everyone is different, but here are some items that I still cannot eat unless I want to spend some time in the bathroom: anything with Marinara sauce and some barbecue sauces.
6. Protein drinks and other supplements are still effective and helpful, I still do this and I recommend it highly. Nutrients are essential.
7. Remember, everything you eat now, goes through you in about 4 hours, give or take a few minutes, mileage may vary for others.
8. Do not take anything that is time-release and expect it to work, Time-release medicine will no longer work because of how fast your body processes everything.
If you have a tough time getting an erection, do not wait to see what happens; go to the Urologist and get an assessment of what the problem could be. The main drawback from this operation is that the male nerves for the penis are moved around and it could impact the ability to get an erection, impact the ability to ejaculate or all of the above. I only mention this because males need to know that it is not them, and that this is a REAL possibility and could be traumatic. The male genital is a muscle and as in any muscle, if not used, its recovery will be slower. It can take a YEAR for full use and some males need help to push that effort along.
Dehydration: Drink water all the time!
This is a huge factor on anyone who has a J-Pouch and they really need to monitor their fluid intake at all times. I have been hospitalized several times for dehydration from getting sick and having diarrhea and vomiting can easily go into a point of no return. The symptoms are stiffness and soreness, but your kidneys will hurt and you will start to feel SEVERE cramping in your legs, your calves, and other areas. Since the large intestine is the re-hydrating mechanism for your body, you now have to really be your own police on fluid intake. The items listed below relate to just one night of not taking in a lot of fluids and letting 10 hours go by and being very ill. Everyone will vary, but this is not just an idle scenario.
[Note from Jini: people with J-pouch may want to try the lemon water (filtered water, fresh lemon juice, stevia) we learned about in my teleseminar with pH acid/alkaline expert Maraline Krey. Instead of just drinking regular water, the lemon (which becomes alkaline after ingestion) water helps the body to hold onto the water longer.]
1. If you get sick, and think you need to sleep it off, do not go through a whole night with these conditions and not drink water, in the morning you may not be able to recover and you will be dizzy and could even faint due to the condition.
2. If you are an athlete you can exercise and go for hours if you drink and keep fluids going that contain potassium and salts. I cannot stress this enough about doing this process.
3. Watch the food you intake, avoid food poisoning as this alone can also create a visit to the hospital. At the hospital, and your muscles are in pain and cramping, you need to tell the ER staff immediately that you have a J-Pouch, failure to do so could mean they catheterize you to get a urine sample when in fact that isn’t necessary at all.
In closing, I hope these little tidbits are helpful, I feel much better, but now MY challenge is the hydration game, I fight in medieval armour and I had food poisoning, which put me in the hospital for several days with getting fluids etc. I have managed to gain total remission from using some of your recommended protocols as well as the SCD Diet , and believe that the key to success is to understand the known causes of the IBD problem (your books do this very well) and to address the tested remedies with an awareness consciousness at all times and discipline, especially when eating food.
[Note from Jini: Sports Blend Electrolytes will likely solve your hydration problems. It is recommended by Dr. Carolyn Dean MD ND and many of my readers use it with chronic diarrhea. Because the electrolytes are angstrom-sized (nanoparticles) they are instantly absorbed into your bloodstream – no digestion required.]
Thanks again Roland, for sharing this important information!