male-jpouchOne of my readers, Roland Lemus, sent in these excellent tips for dealing with the J-Pouch procedure, or if you are considering it…

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.

THE ILEOSTOMY

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.

Male issues:

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!

Colectomy and J-Pouch Tips
28 Comments

28 thoughts on “Colectomy and J-Pouch Tips

  • Great input! I have found a simple solution to tomato sauce, etc. Just add a little pinch of baking soda to it and you will be fine! Another perk is that my non-j-pouch husband does not get indigestion from the sauces with baking soda.

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  • I’ve had a j-pouch for 25 years and have experienced some serious rectal pain from skin irritation

    I have found that pre-moistened flushable wipes work great in place of toilet paper. (They must be flushable, however, or your sewer system will get plugged up. Also, I have found that moisten toilet paper tends to fall apart and get rather messy) There are many brands out there so look for those sold at Target (called Flushable Moist Wipes) or at Walmart. They are the cheapest. I use them all the time……..even carry a “handfull” in a plastic bag with me when I’m away from home.

    For pain relief I use Sween Creme that helps tremendously as an aid in healing. They also make a moisture barrier product that can be applied over the creme. However, I prefer another product for skin protection that is called Critic-Aid Skin Paste made by Coloplast. It is a thick moisture barrier paste and works wonders with severe skin irritation. However, everything I just mentioned may not be easy to find. You’ll have to ask your pharmacist. Even they may not be familiar and will have to order it for you. Target pharmacy can get both for sure. The biggest draw back is they are expensive

    If you are desperate with severe rectal pain, the wipes with the creme and paste work wonders. A thick, constantly applied coat of the Critic-Aid, applied over clean skin, gives your body the time to heal any and all irritations you are dealing with.

  • I had a colectomy & J-pouch in 2008. After 3 years of dealing with anal itching/pain + creams/ointments/lotions + baby wipes + heat rash, etc… I came across what turns out to be a great solution: a washlet. I happened to see one of these at a bath boutique where is was installed in their restrooms. I thought, “Man, this is too easy”. I bought one on eBay (a Toto s300) for ~$600 and installed it myself. (Requires an outlet.) The “soft rear” spray set at highest heat is ideal. You have to move your butt around to get fully cleaned but in a minute or so you need only pat yourself dry and maybe add a bit of Vasoline. These things also have an air dryer which takes a bit of time but feels great. It also has a fan which pulls air through a filter so there’s practically no odor. My wife loves the seat warmer.

    To be clear: The itching and pain were driving me crazy. I couldn’t sleep and was distracted during the day. I tried every cream I could find on Google. I used baby wipes and lanolin laced tissues. I was almost ready to get a bottle brush. Then I discovered by accident that a hand-held shower head set to “spray” using as much heat as possible solved the problem. Just bend over and spray until you feel better. The effect lasts. But this is not convenient when you go to the john 8-10 times a day. Finding that washlet was like winning the lottery.

    Hope this helps someone out there.

  • I have found irrigating my pouch helps enormously in managing my pouch. I don’t suffer from pouchitis. I use a catheter to assist emptying so I don’t get a sore anus. Warm tepid water will flush out the bad bacteria that lead to pouchitis, and I don’t spend forever on the loo.

    Good point about drinking lots. I use rehydration drinks as you need to keep your electrolyte balance right. Too much water con have the oposit effect and wash out the salts.

    1. Can you be more specific how you irrigate your pouch? I would love to try it. And how often do you do this??

  • I had my j pouch surgery early this year and so far things have been good. i’m still getting used to things but it’s improving everyday. i love to read peoples personal stories about their experience and see just how unique they are. i posted my story online as well at http://www.myjpouchstory.com

    Good Luck!

  • I’m glad I found this site, but still worried about having pain for the rest of my life. My last surgery was 8/20/14 and still have stinging and burning pain. II just started a cream called calmoseptine I hope it works. Cathy

    1. Hi Cathy,

      We’d love to hear how it works out for you. If you haven’t visited already, you might find some useful information at our symptom section here:

      http://www.listentoyourgut.com/heal-your-symptoms.html

      If you ever have any questions about any of Jini’s products or protocols please don’t hesitate to reach out. You can also contact us via email at service@listentoyourgut.com or by phone at 888-866-7745.

      Kind regards,
      Justin
      Customer Care

  • I had my J-Pouch (?) 2002 but my doctor didn’t put me on an ostomy. So within a week I was back in the hospital with an infected hematoma. So another surgery, and more staples where the J-pouch is sewn to the anus.

    I would like to know if anyone out there has experienced it to be very hard to get stool past the opening. My gut has been telling me that it’s to tight and it’s not able to stretch and that is why I experience so many problems.
    Barb

    1. Hi Barb,

      I wish I had a better answer for you but I’m afraid that we haven’t heard from anyone with a similar issue. Perhaps one of Jini’s readers will chime in.

      Kind regards,
      Justin
      Customer Care

    2. Hello Barb! You may want to ask your doctor to check for inflammation around the rectum stump (or where it was if you have had it removed like me). I had inflammation on the scar tissue and had to have some surgeries because I was having the same issue. It even got to the point where they couldn’t do a colonoscopy because the hole was to small and my bowel came out in a long string like consistancy.

  • I’m 32 year’s old and had a j pouch done when I was 20. I take a prescription called Diphen/Atropine Tab .. I take 3 tablets, 3 times a day before meals. It really relaxes my stomach and cuts down my bowel movements tremendously!! I go to the bathroom about 4 times daily. I definitely would recommend this to everyone…

  • I had my pouch for 24 yrs. I did have pouchtis and have been on 2 rounds of antibiotics. i still seem to have lose stools .
    i was wondering if this is normal. its not all the time but since i had pouchis i have not returned to normal stools for the most part.

    1. Hi Angela,

      I wish I had an answer for you but we do not have any first hand experience with a J-pouch so that would be a question that your doctor would be able to help you with.

      Kind regards,
      Justin
      Customer Care

    2. I have been living with a jpouch 8yrs. Never not once have I had a formed stool. I had much rather have the jpouch than a bag on my side for many reasons. I have found out my do’s and don’ts. My limits. Respect the belly!

      1. What I have found through trial and error (Mom always said I was hard headed) 1. Try to eat 5 small meals. Low residue diet. NO raw fruits EXCEPT melons and bananas, peaches. Most canned fruits. (Apples tear me up) Avoid any red sauces, spaghetti, marinara at least 4hrs before bedtime.

  • Just had m j pouch put in two weeks ago so I’m very new .although I had my ileostomy bag for 11 months before the j pouch . I’d just would like HELP going in to this life with the j pouch…..Love to be on this sight? please let me know how I can get on it.

    1. Hi Salvador,

      Thank you for your question. We do not have too much more information on the j pouch at this time. You can either use the search bar on the left hand side on our main page at http://www.listentoyourgut.com or on the symptom page at http://listentoyourgut.com/heal-your-symptoms.html if you would like to research anything else.

      If you have any other questions you can also contact us at these options: http://listentoyourgut.com/contact.html As well as the chat window on the bottom of the right hand side of the website.

      Kind Regards,
      Rachel
      Customer Care

    2. I’ve had my j pouch connected for 3 yrs now. I have learned a lot along the way. You must install a bidet in your toliet. Its $25 on Amazon. Will cut down on toilet paper & rashes. Then you can buy a nasal wash bottle for when you aren’t at home. You just fill with warm water and squirt away. I call it my traveling bidet. I use circular cotton pads in between cheeks all day long. This captures any leaks to prevent acid rash. I highly recommend diaper cream with the highest % of zinc oxide. Best advice I got just recently, “if you can recognize any food in the toilet then don’t eat it again” Your body is not digesting it and your not gaining any nutrients from it. Start to love soups with pureed veggies in it. Take all supplements in liquid or powder form. We can’t break down capsules. You will be wasting a lot of money. Look into vitamist spray vitamins they are awesome.
      Hope this all helps.

  • hi

    i had the opperatatiin done too, its niw been 4years. for 3years i have been ill as i strugled to keep nutients in ect but this year it got better(yay). i have been reading all the comments that yiu guys placed. i have followed a diet fron dietician, diets from googlw. ect but i am more comfused in eating . can some one maybe in what your diets is that you follow? today was actually one if the days that was horrible reg. pain. itchy. iritated skin and nine of the products that i use helped. felt like getting worse. i just said to my mom. i wondered how i pouch on the stomach wouldive been… then i came accross this site tonight . i just feel more comfused and iritated, because some family members may not kniw how we feel or how to handle it. sometimes i would just get really frustrated and geting angry as the burns, pains ititatiin si so much that i cant bare it sometimes.

    id like to hear some coments please. i have take note if some of the things mentiined of advice. i dont knoe if i would find them in pharmacies.. but i will try my best.

    1. Hello T.K,

      The best diet we recommend is the elemental diet. Here is some information on what it is:
      http://blog.listentoyourgut.com/what-is-an-elemental-diet/
      http://blog.listentoyourgut.com/elemental-vs-semi-elemental-vs-polymeric-diets/
      http://blog.listentoyourgut.com/?s=elemental+diet

      The IBD Remission Diet book is the best information we have concerning it. You can see more information on it here: http://listentoyourgut.com/healing-resources/5/the-ibd-remission-diet-achieving-long-term-health-with-an-elemental-diet-and-natural-supplementation-plan.html

      You could also search on the symptoms page for more recommendations we may have on different symptoms you are dealing with:
      http://listentoyourgut.com/heal-your-symptoms.html

      Please let us know if you have any other questions.

      Kind Regards,
      Rachel
      Customer Care

      1. Hi. ? thank you so much! i will have a look to the links you gave and follow some.. i apreciate it allot. looking forward in improving in this… i will have a look tomorow morning .;-)

        x

  • Have tried basically every medication out there and currently on Entyvio and Xeljanz. I got my 4th infusion of Entyvio a couple days ago and been on the Xeljanz for about 2 weeks. At my appointment where i received my infusion my doctor told me and my parents that if things didn’t get better this week, that surgery is looking like the next option. I am very scared, but if it is what is best then its what im going to have to do. I am only 17 years old. My mom is very against it and wants to try every possible thing before surgery because she doesn’t want us to regret it. Does anyone have any advice or words of wisdom for me. UC has definitely taken over my life and i just want my life back.

    1. Hi Ryan,

      Thank you for sharing your story with us. I wanted to let you know that none of us (including Jini!) here at LTYG are legally allowed to give out personal health advice to anyone. The only help Jini can give is to remind you (this is also in The IBD Remission Diet) that for severe cases (ie intestinal bleeding), some gastroenterologists recommend at least 6 weeks on an elemental diet. This is the reason Jini went on it for 7 weeks when she healed the hemorrhaging and went from 99 to 135 lbs.

      Jini also encourage you to address the mind/body aspect of your dis-ease. This is the section of Jini’s blog with all her articles on this topic (maybe read/action 1 per day):
      http://blog.listentoyourgut.com/category/musings/

      In 1989, Jini was skeletally thin, malnourished, weak and wracked with pain – unable to eat almost anything without suffering intestinal bleeding and cramping. Despite their best efforts, the medical profession was unable to help her. She was taking 13 pills a day, and her doctors told her that she would never be able to work, have children, or live a normal life. and after three years of feeling tortured by the illness, Jini decided to heal herself, or to die trying. Refusing surgery, Jini began a seven-year mission, researching and experimenting with alternative and indigenous (native) healing therapies. Years of research and experimentation led her to discover eight key steps that nearly everyone with a bowel syndrome such as Ulcerative Colitis, Crohn’s disease or enteritis needs to take in order to heal their gastrointestinal illness quickly:

      https://www.youtube.com/watch?v=5qk1ow0z520

      In developing and following the methods and therapies outlined in Jini’s program, Jini has improved her own health to the point where she has been drug and surgery-free for over 20 years; Living a full and active life, having children, and her own business. In fact, she no longer has Crohn’s Disease. However, she eats mostly organic, unprocessed food, lives in a toxin-free home, takes supplements when needed, utilizes EFT when needed, does yoga and spends lots of time outdoors with her horses. She no longer experiences intestinal disturbances and the spectre of “disease” and all its accouterments (drugs, surgery, hospital visits, exploratory tests, etc.) is no longer a part of her life, and she wishes for each of everyone this same freedom.

      Wishing you all the best in your Healing Journey,

      Cris B,
      Customer Care

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