JPouchI had the Jpouch surgery in 2005 in 2 steps. I feel much better and I am getting able to eat more and more foods over time. I still go to the bathroom about 5 times a day (usually once during the night too). I met my amazing wife a year after I had the JPouch surgery.
Me and my wife in Big Sur, 1 year post-op
Me at Alum Rock 4 years post-op
Level of scarring 5 years post-op, not bad at all
Graphic ImagesHere are some graphic images for the curious, not for the faint of heart
Ileostomy surgery attachments
Surgeon removing my colon
Laproscopic surgery with colon removed
My diseased colon open for inspection
EmergencyThis section is for if you are having an immediate problem. I am not a medical doctor, these are just recommendations from my personal experiences.
- Partial blockage - you will usually have waves of pain in your abdomen which will correspond with the peristalsis of your intestines. This may be accompanied by many bowel movements of mostly or entirely liquid as your body tries to remove the blockage. This can become serious if not treated immediately but do not panic because that will make it worse. Take long deep breaths to breath through the pain. Try taking a warm bath or putting hot compress on your abdomen, drink apple or grape juice to try to push things through (do not eat more solid food), also move/twist your body around to try to dislodge it (if you do any yoga this helps here, especially inversion postures). If none of this is working you may need to go to the emergency room. Take note of any foods you have eaten the past few hours as at least one of those is bad for you.
- Pouchitis - having more bowel movements than normal that are more liquid than normal usually with more urgency, may or may not be accompanied by pain, may also have a burning or inflamed sensation around the rectum. Pouchitis can lead to dehydration which will further complicate treatment. You can get antibiotics to treat this from your doctor. Also taking lots of probiotics helps. Mild pouchitis may occasionally just go away on its own.
- Burning sensation when having a bowel movement - usually from eating spicy/acidic food or from irritated skin or could indicate pouchitis
- Having many bowel movements mostly or entirely liquid - either you are drinking too many fluids with no food to absorb them or you have a partial blockage or you have pouchitis
- Charlie Horses - you are dehydrated or low on potassium. Eat bananas and drink plenty of water with electrolytes
- Dehydration - you will have parched lips, dizziness, feeling faint, charlie horses. Dehydration happens easily and can become severe with the jpouch making it difficult to recover from. Make sure to eat something absorbent when you drink fluids so it doesn't go right through you. In the worst case you may need to go to the hospital to get IV fluids.
- Juicing - Juicing allows you to get all of the benefits of your fruits and vegetables without the fiber which irritates the jpouch. Juicing is more effective for absorption as well. A common juice I make (all organic if possible): kale, orange and carrot. Other fruits to try: kiwi, blueberry, strawberry.
- Smoothies - I make smoothies for breakfast and after working out. Ingredients of my smoothie: vanilla greek yogurt, banana, blueberry, (soy/almond/rice) milk. You can also add peanut butter or almond butter for the after workout smoothie.
- Greens First - I take this to replace not being able to eat many vegetables when I can't juice them
- Probiotics - This will maintain the intestinal flora balance which gets unbalanced much more easily with the jpouch. VSL #3 is a good one
- Marijuana (where legal) - In California, UC is a valid diagnosis to obtain a medical marijuana card. This mostly helps with the stress management aspect of the jpouch.
- Fish Oil
- B vitamins - these are normally absorbed in the large intestine so we need more of them
- Potassium - same as B vitamins, that's why I eat a lot of bananas and avocados
- Psyllium husk - thickens the stool up (similar effect to immodium/lomotil), take 30 minutes before meals. The powder is more effective.
- Calmoseptine - I use this when things get irritated down there.
- Bottoms Up Balm - I also use this when it gets irritated down there (make sure the area is clean before applying).
Travelling with a JPouchI have travelled to Turkey, Greece, Italy, Germany and Poland with the JPouch.
- Don't count on busses in other countries having bathrooms onboard, even overnight busses.
- Bring travel detergent with you to wash your underwears in the sink when there is no laundry service available. If you do not have travel detergent (or it has been confiscated by the TSA) hand wash your underwear with soap in the sink then use either a blow dryer to dry or hang to air dry overnight.
- If you develop pouchitis, eat a lot of greek yogurt (probiotics) and relax as much as possible. Also some countries have excellent pharmacies where the pharmacists act more like doctors and you can get many things over the counter for very cheap. When I was in Turkey, I was able to get Loperimid and Spasmomen for $4 USD without a doctor visit or prescription.
- Arrange to not arrive too late in the day at hotels, especially small Bed and Breakfast places because there may be no one around late at night and you will be stuck outside.
- These eastern style squat toilets exist. You can use them with a jpouch but squatting makes things a bit explosive so take extra care to avoid splash damage.
- Bring a pack of wet wipes and a roll of emergency toilet paper, some bathrooms will be out of toilet paper or simply not have it.
- Know the word for bathroom in the local language. Do not count on every person knowing english.
- Get a detachable shower head so that you can keep the area down there clean. Having diarrhea will irritate the area over time if it's not kept clean. If you don't have a detachable shower head you can wet some toilet paper in the sink, use a washcloth or wet-wipes.
- Drinking a lot of water without eating anything to absorb it can cause problems: it will just go right through you and will actually take more water to process it through the intestines thus dehydrating you. That being said, do not drink water at night. It will likely go right through you and make you shit your pants without you even knowing until you wake up :(
- If you go to sleep drunk, you can expect to leak in your underwear overnight so be prepared
- It's much easier to become dehydrated with a J-pouch, make sure to get enough water in the day. When drinking water, make sure you eat something to absorb it (like bread) so it doesn't pass through you.
- Watch out for developing pouchitis; it can creep up out of nowhere. You may experience more frequency, blood, irritation and occasionally more urgency. In this case make sure you relax and destress and stick to a diet you know works.
- I am still unable to flatulate without creating a mess; most cases where I have to go to the bathroom are because I just have to fart. I have been able to fart successfully only 3 times.
- (Men) You may not be able to pee standing up without having to also do a bowel movement. I am getting better at this over time but it takes a lot of control and the bowels need to be mostly empty.
- Occasionally the rectum starts itching when I have to go to the bathroom (After 3 years this stopped)
- I try not to eat anything right before bed or I end up waking up every few hours during the night to go to the bathroom
- In chinese medicine, the large intestine is linked to the lungs so watch out for lung problems down the line. I developed a chronic cough 3 years after the surgery which came and went over time. It has subsided as of 2010.
- Be careful when taking cough syrup with codeine (promethazine) in it during bedtime; the codeine may relax your intestines (and put you out) to the point of you shitting yourself in the middle of the night.
- Working out (whether you do cardio or weight building doesn't matter) is great for stress relief and general overall health, I recommend it. I always say the hardest part about working out is getting to the gym.
- Eating a lot of protein will make your bowl movements very smelly (this also happens with sushi). When working out, many protein mixes will not agree with you, I use TrueProtein's website to make custom protein mixes I can handle. My mix is 70% Whey Protein Isolate Cold-Filtration, 20% Micellar Casein (Instantized), 10% Branch Chain Amino Acids INSTANTIZED (BCAA's)
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