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Hello my fellow Jpouch people... A little history - I fought UC for 15 years before I had to have surgery - suffered through 3 surgeries to finally get my Jpouch. I have now had a Jpouch for 3 years and I still suffer with but burn. The pain is often horrible; this makes me sometimes wonder if I should have stopped at surgery #1 and gone with a Ileostomy bag. I use a bidet to wash off after every BM, pat dry  and use Calmoseptine.  If I am very careful with my diet - avoiding red sauce, anything spicy  - some days it is not so bad; however this is still a daily struggle. Just wondering if I am missing something; anyone else still in the same But Burn boat?

 

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Hi, jpouchman. 

It could be that the menthol in calmoseptine is not what your skin needs right now. Menthol worked very well for me in the first weeks, cooling and soothing, and creating a barrier against residue, but it became a bit too strong for me. I switched to Zincofax, a bum cream for babies' suffering diaper rash. Baby bums are always wet, covered with pee and poo, and locked against their skin with a thick diaper. Recipe for painful, raw skin. Same as a j poucher. Try Zincofax after every BM. Make sure your skin is 100% dry and clean before applying any cream, otherwise you risk a fungal infection back there. Use a cool hairdryer if you must.

To heal any abrasions hiding inside, or just for some relief from pain and burn, buy a sitz basin and use very warm water, sit in the basin once or twice a day for 10 minutes or until the water cools. You can use the tube that comes with a sitz basin to refil the basin with warm water without getting up from the toilet. The warm water will encourage good blood circulation to that area, and will soothe your burning painful skin. Zincofax is $10 or so at any drugstore's baby section. 

I use sudocrem twice daily and apply it directly with my fingers on the hole. Use low pressure on bidet, dont clean the area with toilet paper just gently put it to dry the area . Also butt burn is a issue when the stool is either too runny or acidic. Try supplementing zinc  and vitamin E if you're not having enough from foods. It increases the healing capacity of skin.

Winterberry posted:

Hi, jpouchman. 

It could be that the menthol in calmoseptine is not what your skin needs right now. Menthol worked very well for me in the first weeks, cooling and soothing, and creating a barrier against residue, but it became a bit too strong for me. I switched to Zincofax, a bum cream for babies' suffering diaper rash. Baby bums are always wet, covered with pee and poo, and locked against their skin with a thick diaper. Recipe for painful, raw skin. Same as a j poucher. Try Zincofax after every BM. Make sure your skin is 100% dry and clean before applying any cream, otherwise you risk a fungal infection back there. Use a cool hairdryer if you must.

To heal any abrasions hiding inside, or just for some relief from pain and burn, buy a sitz basin and use very warm water, sit in the basin once or twice a day for 10 minutes or until the water cools. You can use the tube that comes with a sitz basin to refil the basin with warm water without getting up from the toilet. The warm water will encourage good blood circulation to that area, and will soothe your burning painful skin. Zincofax is $10 or so at any drugstore's baby section. 

Many thanks for the reply, I just ordered a tube of Zincofax. Gonna try sitz bath as well.

Raj posted:

I use sudocrem twice daily and apply it directly with my fingers on the hole. Use low pressure on bidet, dont clean the area with toilet paper just gently put it to dry the area . Also butt burn is a issue when the stool is either too runny or acidic. Try supplementing zinc  and vitamin E if you're not having enough from foods. It increases the healing capacity of skin.

Many thanks, I'm gonna try the vitamin therapy for sure.

I have butt burn problem since I had my JPouch (5 years now).  I tried a number of creams and ointments, from pharmacy, holistic stores, organic, home made, etc., and nothing, nothing works better for me than Petroleum Jelly.  After I use the bidet, tap my butt with soft tissue paper and put a good amount of Petroleum Jelly.  It works so fast I feel relieve in hours.  Did anyone try it before? 

I have the Toto "Washlet" toilet seat which works like a bidet.  The ointments I've tried include Calmoseptine and Zincofax which are similar  The calamine in the Calmoseptine has a mild numbing effect.  Also various diaper rash creams like Desitin and A+D.  My doctor thought she saw fungus in the rash and prescribed Nystatin & Triamcinolone and Halobetasol Propionate Cream.  I can't say that any helped, especially as I wipe them off with the first poop.

I've been living with a painful butt since my second bout of Ulcerative Colitis in 2004.  Surgery in 2005 didn't help the diaper rash but at it least saved my life.  I'm still here 14 years later.

Toni


 

jpouchman123! posted:

Hello my fellow Jpouch people... A little history - I fought UC for 15 years before I had to have surgery - suffered through 3 surgeries to finally get my Jpouch. I have now had a Jpouch for 3 years and I still suffer with but burn. The pain is often horrible; this makes me sometimes wonder if I should have stopped at surgery #1 and gone with a Ileostomy bag. I use a bidet to wash off after every BM, pat dry  and use Calmoseptine.  If I am very careful with my diet - avoiding red sauce, anything spicy  - some days it is not so bad; however this is still a daily struggle. Just wondering if I am missing something; anyone else still in the same But Burn boat?

 

I realise this is an older post, but have you tried taking Metamucil (smooth) right before main meals? I found it provided a cushioning effect, reducing the acidity of BMs and also creating a gel that is less irritating to pass. If you search my posts you will find detailed info on how I used it.

I love this cereal. I put it in yogurt. I try and remember to sprinkle it in soup or for instance, as a topping in a baked potato. I want to make muffins with it after the New Year and bring them to work. https://www.swansonvitamins.co...-oatbran-10-6-oz-pkg  

I buy it at Whole Foods but see one can get it on line.

 

I am experimenting with other foods that help bulk things up... Avacado, pumpkin (from a can.. just heat some up, you can add nutmeg or cinnamon and eat as a side dish!) , sweet potatoes. I'd love to hear from others.

 

I have a very small bathroom that I share with my boyfriend and just can't see where I would even store a sitz bath and it just seems like one more thing to make sure I keep clean (along with my dehumidifier, my essential oil diffuser, etc, etc,) and to me, seems awful time consuming... so I just take tons of showers. Even a quick shower where I wash off my butt area with a mild soap, like an unscented Dr. Bronner's liquid soap or Johnson and Johnson's baby soap... and stand under the hot shower, letting the water go onto my anus area by bending forward and adjusting my butt checks. Then make sure, like everyone says, I dry off carefully. We always have an extra rotating fan in the bedroom and I often stand in front of it, turning it to not rotate and just use it to dry everything off well. My Dr. prescribed me a marvelous creme that is by prescription and is made in a place where where they make compounds and it is the best cream I have found. I only use it when I am cleaned up from a shower.

 

I travel a lot and again, I can't see hauling around a sitz bath and often, I share rooms with people I don't know that well.. so I just keep it simple and take lots of showers. Time consuming, but I would think so is a sitz bath and I just don't see the difference in time or end results.

Hello my fellow Jpouch people... A little history - I fought UC for 15 years before I had to have surgery - suffered through 3 surgeries to finally get my Jpouch. I have now had a Jpouch for 3 years and I still suffer with but burn. The pain is often horrible; this makes me sometimes wonder if I should have stopped at surgery #1 and gone with a Ileostomy bag. I use a bidet to wash off after every BM, pat dry  and use Calmoseptine.  If I am very careful with my diet - avoiding red sauce, anything spicy  - some days it is not so bad; however this is still a daily struggle. Just wondering if I am missing something; anyone else still in the same But Burn boat?

 

Hi JPouchman,

I think that this is probably an issue that most of us have struggled with at one point or another and for many it's an ongoing problem. I tried all of the OTC creams for diaper rash and whatever else they suggested to me, but the best one came from my dermatologist (and I just described to him what the issue was - he didn't actually examine my skin) and he gave me Lotrisone cream, a prescription strength medication used to treat fungal skin infections such as athlete's foot, jock itch, and ringworm. And within a week or two, my skin was much better; however, it's always a struggle to keep the area dry, which is so important for healing no matter what you use! Good luck and take care....

I know what you mean, and I wish for me it ended there.  Mine goes up into my rectum.  It feels as if there is an eight piece of red hot angle iron in my anus and rectum constantly.  It is disabling.  It ruins many things, such as sex, because it completely takes my concentration from whatever I am doing.  It also makes it feel as if all Hell is about to break loose all the time.  Do others have this as well?

hey there...I must be super lucky. Sometimes when I go, the burn is so bad, when I wipe, there are small blood stains on the paper. And when that happens, I use Ilex. This is magic. Just apply a thin layer - seriously, this is not a case of more is better, a lot goes a long way. This was truly made for babies and us! Do not need to dry, and works over anything, always! I recommend it to so many people and to my daughters for the grand babies. Says right on the product, "can be used on moist wounds." NO bidet, no other tools. I sometimes use a flushable wipe, but don't have too. Good Luck!

@Maggie4 posted:

hey there...I must be super lucky. Sometimes when I go, the burn is so bad, when I wipe, there are small blood stains on the paper. And when that happens, I use Ilex. This is magic. Just apply a thin layer - seriously, this is not a case of more is better, a lot goes a long way. This was truly made for babies and us! Do not need to dry, and works over anything, always! I recommend it to so many people and to my daughters for the grand babies. Says right on the product, "can be used on moist wounds." NO bidet, no other tools. I sometimes use a flushable wipe, but don't have too. Good Luck!

Hi Maggie4... what is Ilex and who makes it? Do you like in the United States? I have never heard of it. Do you apply it before you go to the bathroom to make wiping easier/less painful? 

Hi Dancing Girl, google it. I am sure you can get it on Amazon. I used to put it on every other day, but as I changed my diet and my pouch matured, I found it not necessary. Now, if I have an off day, I put it on as soon as I feel the burn. It creates a barrier, that can last a day, if you put on a thin layer. It works really well. During the first two years, due to my diet, I would go so often, that using wipes would create a fungus rash due to so much moisture. That is when someone told me about ilex. 

Brian B Tampa, that used to happen to me all the time. It was awful. I used to have to put numbing cream up there. No sleep for a long time. Thankfully, those days are gone. 

I wish I never had the surgeries.  I would rather suffer with the sick colon than the awful consequences of the pouch. And the ostomy bag?  As a single man, it is a step away from death. It means the end of sex, periodic bag bursts in bed which are horrific, and just a complete diminishment of quality of life. And the pouch life is only a half-step above.

The doctors and nurses told me I would feel so much better after the surgeries. It was 90% effective they said... then afterward, when I was so sick, no control of bowels for months, then not anything close to a solid bowel movement for five years, constant cramping, nausea, urgency, violent diarrhea, basically being housebound, they told me well you must be the fifty percent that does not respond well.  I have zero faith in the medical community in making this any better. They now tell me I am depressed.  Gee, ya think?

I wish I never had the surgeries.  I would rather suffer with the sick colon than the awful consequences of the pouch. And the ostomy bag?  As a single man, it is a step away from death. It means the end of sex, periodic bag bursts in bed which are horrific, and just a complete diminishment of quality of life. And the pouch life is only a half-step above.

I respectfully disagree with that. A lot of people on here have an ostomy  and they have great sex lives. 

When i had a bag, I definitely had many bag bursts but its all about getting the hang of it. I was definitely depressed with a bag but I think overtime I probably would have been okay with it had it not been for the everyday blockages. 

If you ever need a bag again, try being more positive about it and accept things you cannot change- that makes life a lot easier. 

Just some friendly advice

Hey Brian... I wanted to write yesterday but I had a ton of errands to do and I kept thinking I didn't know the right words. Well, I still don't know the right words but I know you are going through a hard time and I at least, want to acknowledge that. All of it is hard.. being sick for so long, having operations, getting used to a new system in one's body, having things not work the way you had hoped, and yeah, looking at ourselves in a new light and going.. WTF??? I remember coming across an old photo of me in a bikini and crying my eyes out because of my new scars from surgery and knowing those bikini days were never going to come to fruition again. I remember lots of bad things like bag bursts (I had a temp. loop ostomy for a very long time before take down and reversal) and bag leaks from the original ostomy and return trips to the ER etc etc etc. Oh there were so many other medical horrible things too cause my body was just pissed off at me from years of a very diseased colon inside of me. Ultimately, I could not have lived that way.. I would have died... so, my end result was LIFE.. with.. umm.. a few compromises.  And I'm reminded of this all the time.. I wake up every day, still not feeling all that well, but I do my routine to get myself up and going and clean and organized and many a day I go to the pool or meet a friend for a long hike, or pre covid, wound up going dancing three to four times a week. I found/find things that work for me and find joy within them. Yes, ,of course, I am in pain a lot, I still go to the bathroom a lot, I take a zillion showers and lose sleep etc. etc. but as my best girlfriend reminded me just the other day when I told her I needed another hour before I could meet her.. at least, i didn't cancel. Many a time pre operations, I would just cancel and lay in bed. I don't have a magic solution to help you feel better.. but I wanted to say, you are not alone in your thinking at this time... I don't want to say anything trite, like take it one day at a time, or things will get better... or stay positive.. yet, all those things are things that you could say to yourself. Maybe just think of it as >> hey, I am alive and I am going to make the best out of what I have now... My aunt would always say, "it beats the alternative" and I knew full well what she meant.. her husband, my beloved favorite Uncle died of lung cancer at age 51,   Anyhow, I don't know if I am helping or not but just to say, yeah, it's a very hard time of things for you right now... try different things. I know I also started going to synagogue once a week. Years later, I don't go very often, but at the time in between about five operations, I went and it helped me. It helped me to have something once a week to go to. Try and get out of your head and try new things. I realize some things are very limited due to covid. but get creative and you'll figure things out. Do you have any childhood or school friends? You could meet and play cards on a picnic table, etc. etc. The sky is the limit. Carry a bag of items you need to go to the bathroom and emergencies.. throw it in a knapsack. No one needs to know you carry around extra clothes, toilet paper, hand sanitizer etc etc. Take a hike in the woods, duck behind a tree and do your business if you have to. Heck, that'/s what I did on Saturday. I wish you much luck and much strength and much health and feel free to write again if any of this was of any help. 

Brian, I had a J pouch for 30 years and can relate to the problems that you are experiencing.  I developed techniques that helped me to live a somewhat normal life.  During this time, I held a full-time job, traveled internationally, had a horse breeding business and competed in equestrian competitions.  I was also single during part of that time and had a good sex life.

When recurrent high grade dysplasia and a malignant polyp in the anal canal made it necessary to have my J pouch removed, I got a BCIR (similar to a K pouch) since I strongly did not want a conventional ileostomy with its associated issues.  I have now had a BCIR for 7 years and it has given me a very good quality of life.  Please feel free to contact me wit a PM if you would like to talk.  

Bill

 

 

Sorry Brian you are suffering so much! I am 6 years out from getting my j pouch and my best advice is using Ilex Paste. I buy it direct from their website, keeping tub size in bathroom and carry tube with me, along with Vaseline to clean after BM. I will tell you it may burn a but at first try, but by morning, so much better, I recommend light layer around anus for awhile, and a larger amount at night. It actually blocks leakage for me. I do use a bidet now ,though before that I used squirt bottles ( Amazon ) to rinse with warm water following BM. I use Vaseline ( Costco at pharmacy ) every time I go to bathroom to clean area and it is very useful to get off Ilex paste after BM. Good toilet paper also  a must! 
Other things that help is psysillium husk capsules to bulk up stool and I also take prescription Colestipol to reduce acid in output. I also take pepto bismol capsule if I’m having bad day with leakage. So, many things can help, and I wish I didn’t have to do all, but I couldn’t handle the bag so will do whatever it takes to keep this pouch. I hope you can get some ilex paste, because that is my single best can’t live without way to stop butt burn and  leakage. Good luck! hang in there, as it does take time for your body and you to adjust!

Hello, Brian B Tampa.  

I hope you're still visiting this site to see the support that you have after members have read your last post. I hope you haven't given up on this site because here you will find words of support, help, suggestions. Maybe you've tried everything, but there just might be one person who reads your anxious note and has tips or a solution you could try, or someone you can contact through. Private message. You don't have to be alone in this, okay?

I won't write breezy words or tell you something you already know. That's like telling a desperate, sad person hanging off a ledge to just cheer up. I work in peer support for cancer patients and I know that is not helpful.

You have bad days. Some days are dark and depressing. You might not see how your days can get better, maybe you think you will always be alone. Come back to this site and write how you're feeling, and see how there are more people to help you, than not. Try to give yourself half a day in the week, just half a day, where you refuse to think about your situation. If the thoughts come, push, or shove those thoughts aside, and do something else, just for that half day. Or half an hour, to start. When that break is up, go back to whatever you were doing or thinking. Next week, extend that break time by five minutes. Give your mind a short time to rest and gather your strength. This exercise doesn't cancel your J pouch, but it can give you an emotional rest which is just as important as a physical one. Don't give up on yourself or this site. Please.

 

The doctors and nurses told me I would feel so much better after the surgeries. It was 90% effective they said... then afterward, when I was so sick, no control of bowels for months, then not anything close to a solid bowel movement for five years, constant cramping, nausea, urgency, violent diarrhea, basically being housebound, they told me well you must be the fifty percent that does not respond well.  I have zero faith in the medical community in making this any better. They now tell me I am depressed.  Gee, ya think?

Sorry to hear about your suffering too Brian. I hope things get better!

10 years and a bunch of surgeries later. I use a paste from Cleveland Clinic. Just had pouch exam and major inflammation. Dr wants me on biomedicine which is what I was trying to avoid. Surgeon told me to use Desitin. Push it up into rectum. Can’t get very far unless you can collapse your body for position. The J-Pouch was a mistake, they sell a good idea! Not sure if was for the money or if they are really trying to  help people. Now I have an open ab muscle wall from surgery. Lot of good advice on this sight.

Hi. I’m new to this forum but have had my J pouch for 30 years. In reference to the butt burn, I could not survive without Critic Aid Thick Barrier Paste. It’s a cream I apply before I use the restroom. It coats and protects my skin and keeps it from breaking down. It has absolutely been my life line all these years. My pharmacy keeps it in stock for me.
DPB

@DPB posted:

Hi. I’m new to this forum but have had my J pouch for 30 years. In reference to the butt burn, I could not survive without Critic Aid Thick Barrier Paste. It’s a cream I apply before I use the restroom. It coats and protects my skin and keeps it from breaking down. It has absolutely been my life line all these years. My pharmacy keeps it in stock for me.
DPB

Welcome to the forum! And wow that is amazing!!! Be careful on the forum, some people are mean on here lol. Have you had any complications during the 30 years???

It is amazing to hear about success for THIRTY YEARS. To be honest, I didn't even think about how long my J pouch could last.. I knock on wood that it's been about 13 years or so now. I am knocking right now!!!! Long live J pouches. Welcome to this site.. I don't use it that often but from time to time, it's been helpful for me to pose a question or two. I don't find that people are mean, but I have found that sometimes people give advice and then when you think about it and then question them, they don't REALLY have the surgical procedure I have (which is a J pouch) but rather are giving advice from based on having a different procedure and there really are differences in the aftermath. . It's just like other places in life.. some folks just feel superior due to their circumstances. I'll leave it at that.  But again, Welcome!!

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