How to reduce frequent BMs with Jpouch?

by on Thursday, June 25, 2009 17:05
This entry is filed under: Living with jpouch

Hey Readers,

We just got this email from Tom, and he is new to seeking online support to figure out the complication he is dealing with.  Could you all take a peak at his concern and see if you have any insight.  Also, we encourage our readers to post their questions/concerns at jpouch.org because that is a thriving discussion board that can offer great insight as well.

My J Pouch has been in place since 9/2005.  I immediately started having problems with the number of bowel movements I experienced on a daily basis – sometime numbering 20 – 25.  My Dr. tried a number of drugs to “slow down” my system but nothing helped.  I have seen a nutritionist only to be told after two contacts that she couldn’t help me.  To this day I continue to have 12 – 18 bowel movements a day.  I am currently undergoing a physical exam to see whether or not there are any other contributing factors to my frequency problem.  Needless to say, I am suffering from this problem.

Has someone who “had” a similar problem and beat it or severely reduced the daily number of movements.

These posts might also help out:

You can leave a response, or trackback from your own site.

100 Responses to “How to reduce frequent BMs with Jpouch?”

  1. avatar

    Mark says:

    June 26th, 2009 at 12:17 am

    Hi Tom, I average around 10 BMs a day myself and use immodium and fiber, when I don’t use the combo of those 2 my BMs definately increase to 12 and more a day. Are you on a steady routine of immodium and fiber? And have you tried changing your routine, etc…trial and error helped me figure out what works best for me. And here is a great post where Jan explains in the 3-4th post down How imodium works explained because understanding how the medicine works helps Mark use it better.
    http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/5601080242?r=5601080242#5601080242

    My diet does affect me too, the poorer I eat the more I go, and alcohol and caffeine make it worse for me. Here is a good link for some diet info http://www.j-pouch.org/diet.html .

    Some questions for you: 1) what is your immodium and fiber routine? 2) Have you been treated you for pouchitis? 3) Do you still have your rectal cuff? If so, could you have UC in the cuff?

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  2. avatar

    Olina says:

    June 26th, 2009 at 7:06 am

    I am on Cipro 250 2X daily. This has finally helped settle me down. I still have 6-7 BM’s per day, but I don’t relapse into Pouchitis every time I stopped these meds, because I will not stop them with my Doc’s permission. I also take Align which is the best probiotic I have taken yet, and I’ve taken pretty much all of them. I also take Metamucil twice a day. Hope this helps. Olina

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  3. avatar

    Elizabeth says:

    July 20th, 2009 at 8:16 pm

    I have had a J-pouch for 23 years now…I still go to the bathroom 8-10 times each day. :) I happen to know where every bathroom in Cincinnati is… The best advice I can give is to eat meat – it is a natural constipator. Steak usually works best. I don’t take any extra fiber, metamucil, NOTHING. Also, always go to the bathroom before you eat a meal. That helps you make it through the whole meal without having to excuse yourself. I would love to say that I sleep through the night, but I’ve learned to sleep walk to the bathroom…

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    Hans Honegger Reply:

    Hello Mark
    I have had my J pouch for 12 years. I currently have about 6 bowel movements per day. Average 3 during the night. I take no meds nor do I watch what I eat other than pretzels. For the first 2 weeks of my new configuration I barely got off the toilet. My doctor made some interior adjustments by hand. Apparently the pouch required to be persuaded (streached open) to a grander size.
    I went from 45times per day to 6 same day.

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    Mark Reply:

    Hi Hans, Yes, I have seen my BMs lower as my jpouch gets older. In the beginning I was less able to hold much waste, but now I’ve increased to holding more and more. It has been a great thing to have the pouch get better with time and use. If only everything in life would get better with time!

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  4. avatar

    brian says:

    November 30th, 2009 at 8:34 am

    Hi, Tom i have had a jpouch since 2004. The only thing that i know for sure is that just when you think you have it figured out it changes…. Taking fiber after every meal eating only three times a day has often times been good …other times not so good…sometimes im ok eating alot of junk food sometimes not….However one thing i have never done good with and it has always caused me lots of problems with frequency is lots of sugar. I avoid heavy amounts of sugar ….lots of sugar for me is like a garunteed bad day….hope you get things under control. God Bless

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  5. avatar

    Mary says:

    November 18th, 2010 at 9:17 am

    I just found this site. I have been having 8-13 BM a day. It’s been that way since 2007 since my surgery. The GI doctors I have recently been going to don’t seem to have a clue. None of the others did ether. This doctor says since the J pouch is ‘failing’ I will eventually need a colostomy bag. Something I am not looking forward to. I started wondering if sugar might contribute to number and kind of BM and did a Google search on sugar and J pouch which led to many sites including this one. Besides going so much the other problems are a sore butt and leakage. I’ve tried all kinds of creams even prescription with very little relief. I missed a celebration of my birthday this year since I feel I need to be near a familiar bathroom to deal mostly with the sore butt. The information I’ve read so far on this site is very, very interesting. I am wondering and hoping that someone out there may have a solution to my sore butt. I think if I could conquer that, I might be able to live my life again. Thank you so very much for any information or insight you might have. I really appreciate it. PS. Other than leaving a reply, I don’t know how to sign up for/join this bulletin board.

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    Paula Reply:

    Mary, Try ILEX for your bottom. It’s a skin protectant paste and has been a lifesaver in my life.

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    dina Reply:

    i suggested to my friend the use of baby cream for the diaper area.  he said it helped

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    Rick Reply:

    Mary,  there is an over the counter product called Calmoseptine ( http://www.calmoseptine.org ).  It’s been a lifesaver for me when I have anal irritation.  My surgery was in 2002, and I struggled for many years with the same issues you have complained about.  After a change to a high fiber, plant based diet, I have pretty much eliminated the irritation, though not the frequency.  Some foods just cause a lot of BM.

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    James Reply:

    Calmoseptine ointment is my choice also. Has saved me from burn many times over the past 20 years

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    Lori Reply:

    Sugar!  Sugar causes fermentation which causes gas which causes pressure. Try to eliminate sugar by using alternative sweeteners like Agave or Stevia.  I still think diet has more to do with these problems than a “failing j-pouch”.  Wow.  I wouldn’t want someone to go back to a bag after having a j-pouch until all options and ideas were considered.  Doctors are not dietitians.  Sad, but true. So many of the ideas in this blog doctors would scoff about, until they had their own j-pouch!

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    Julie Reply:

    I agree absolutely about sugar Lori! Often overgrowth a of unfriendly bacteria like Candida that thrive on sugars in our diet are big players in the development of inflammatory bowel disease in the first place. It can be good to eliminate them completely. Refined (white) grains convert to sugars quickly so eliminating them is a good idea too. Check out FODMAP foods too because these can be a problem for many as well. Personally l use traditional Chinese herbs and find that these treat at the cause. Work brilliantly!!

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    Lesley Reply:

    I find carbs like pasta and bread aproblem. Awkward when out and about though as snack foods tend to be carbs or salads :( and salads are not advisable frequently either! What Chinese herbs do you use?

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    Judith Reply:

    I need some help.
    I’ve had my j pouch 13 years and am very grateful for it.
    The whole thing is a daily challenge though with one thing or another, but I usually manage pretty well.
    Sometimes, like now, the stool doesn’t come out. It’s mushy and gets stuck. So uncomfortable and itching that is awful. That leads me to having to get it manually which leads to horrible inflammation of my anal area to where it is excruciating and swollen so that nothing comes out and I can’t get in.. So horribly sore.
    Soaks help temporarily. If I try to much I get s terrible like diaper rash. I use Triple Paste hoping the whole thing will get better in the mornings but it doesn’t. Any help?

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    same situation Reply:

    have you tried rolling up a few aheets of toilet paper and keeping it between your butcheeks. Changing it every time you go to the bathroom? Also, eating blueberries in rice krispies and skim milk has to be my first meal of the day to avoid acid…

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    David Brickell Reply:

    No more but burn with the following remedies:
    welchol is a prescription bile acid sequestrant and absorbs bile salts etc which deals with BM burn.  Also I use a bidet (powered with heated seat and water) which washes area and then some (all the way up the cuff)

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    Tom Reply:

    Mark, I have been told that taking Immodium regularly will damage kidneys over the long haul. Have you experienced any problems of this nature?

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    Ken Reply:

    I keep a tube of hydrocortisone cream and neosporin in the bathroom.  When I know I’m having a flare up and will spend more time on the toilet, I coat my anus with it as a protective layer.  It helps immensely.

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    Yvette Reply:

    Ive had a j-pouch since February 2015. My diagnosis was UC. I’m doing much better but there are bad days too. I feel like I’m doing better. When I have a flare up and my rear acts up I use Calmoseptine cream. It’s so soothing. You can order online or go to your store pharmacist and have them order it. I’ve also been told to use cornstarch with it if you have bad leakage. Hope this helps someone.

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    Rhonda Blackwell Reply:

    My friend went to a bag from her pouch and says he should have years ago. Says her life is a better quality now. I have had mine 26 years. I keep the orange peanut butter crackers handy. My surgeon had me speak ith a lady close my age(25) at time surgery and she said it helped absorb some acid when not hungry. Acid takes hide and so it feels.

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    Kamran Rassouli Reply:

    Hi Mary,
    I have had j-pouch for about a year. I control my sore butt, by eliminating acid, pepper, and oil in fatty food.
    As soon as I realize I have has food that is causing acid, like meat, I take a teaspoon of baking soda with water, which is once in the morning and once in the afternoon. Lemonade to offset the oil food. I avoid pepper all together, but if I feel that I had some pepper in the food I ate outside, regular Greek yogurt. Lactose free keifer for those who are lactose intaulerant. Coffee bothers me, by making my body lore acidic, therefore more burning on the way out. I am reducing my BM, with half Imodium morning and half in the afternoon. I am a nigh owl, that helps me be out at night and sleep through night, with maybe one BM at night.
    Colmoseptin is the ointment that works for me too. I usually by cotton squares from the cosmetic section to help keep dry, a bit longer to make it to the bathroom, preventing the sore.
    Kamran

    [Reply]

  6. avatar

    JoAnne Forman says:

    February 1st, 2011 at 11:49 am

    My husbands family doctor recommended a mini shower to reduce the sore butt that comes with so many BMs a day: http://www.amazon.com/Mini-Shower-Bidet-Multi-Use-Hand-Sprayer/dp/B001OIVDE4 This has been a the best recommendation he has received from any doctor. We even have one that we travel with if we will be staying in any one place for some time. Easy to connect and remove.
    Hope this helps.

    [Reply]

  7. avatar

    John O. says:

    August 5th, 2013 at 9:28 pm

    I have been researching how to reduce BMs after my take down (October 2012).  I started out with 6-8, and increased to over 25, settling in at 15-25, with over half of these during the night, so I barely sleep most nights.  Percoset works well (but … not a solution) to reducting BMs.

    I have tried maximum dose immodium, 3X daily fiber (psyllium and methyl cellulose) in combination, each by itself.  I was prescribed welchol and then colestipol, both worked for a couple days, then made my symptoms worse (pain, lost of control, diarrhea….).   Another solution is not to eat.  This works only for short periods naturally.

    I’ve been carefully watching what I ingest, and with few exceptions, it seems independent of my diet.  I posted on another website that was supposed to be really helpful, and I got nonsense responses unrelated to my condition.  Open to suggestions.

    [Reply]

  8. avatar

    Lisa Harris says:

    August 6th, 2013 at 10:39 am

    John, have they checked to see if you have Pouchitis? Your symptoms are similar to what I was dealing with. They scoped my pouch and saw infection. I’ve been on Cipro now for a few months, taking one in the morning and one at night and it has made a significant difference!

    [Reply]

  9. avatar

    John O. says:

    August 6th, 2013 at 1:42 pm

    My surgeon has been unconcerned with my discomfort, and after 3 followups without a hint of concern or action, I went back to my gastroenterlogist.  I suggests cuffitis… based on my reading it could have been but not anymore, it is getting significantly worse.   MY GI doctor is not listening to me when I tell him I am experiencing pain, and urgency.  The scripts he gave me only make that part of it a lot worse.

    Having called both doctors for a visit, they are scheduled 5-6 weeks out for an office visit, so relief is not in sight.   I do have my stash of sulfasalazine from pre-operation, and I have read where it is useful for inflammation where pouchitis is concerned, and it does work but I only have about a 3 week supply.

    I’ll pressure my GI doctor in this direction.  At lest he uses a proper scope, and can take photos.

    [Reply]

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    Be Healthy Reply:

    Hello! My son has a J-pouch. Through much research on my own at first, then sought the assistance of a “Functional Medicine” doctor, we found a combination of supplements has helped tremendously. The doctor ordered an extensive panel of blood work that identified some deficiencies. Omega 3’s were low for one. Omega 3’s (fish oil, flax) are a natural anti-inflammatory and help the energy level. I use Mega Red krill oil for him. It’s small and doesn’t give a fishy aftertaste. I strongly suggest seeing a “Functional Medicine” doctor. They are M.D.s with additional education in nutrition and are open minded!! Eat foods higher in soluble fiber than insoluble. This will aid in slowing BMs. Eating veggies high in soluble fiber will help your body naturally produce fatty acids that IBD patients are often low in. My son is off all medication and is doing exceptionally well after a very bad case of UC. Good luck!

    [Reply]

  10. avatar

    Sheila Whitson says:

    September 18th, 2013 at 6:21 pm

    I’ve had j-pouch since 1996. Still  have lots of bm’s and sore back side. Some days, I can’t leave the house. I have been checked several times. Just do the best I can. I know what I can and cannot eat, because of this, I have gained about 50 pounds trying to figure out what doesn’t hurt. I am 68 years old. Sometimes feel like i’m 90. 

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    John O. Reply:

    Thank Sheila.   What I cannot convey in my brief post is that I am unable to live and function normally, as in unable to go to work sometimes, and unable to get through a day of work without such discomfort I cannot do my job.  After 58 BMs through the Labor Day weekend (evenly spaced, so leaving the house wasn’t happening) I went to my appointment.  

    Xifaxin, and Ciproflaxin were prescribed.  It’s been almost 2 weeks and I’ve had 12 consecutive good night sleeps, which is 12 more than I’ve had since October 2012.  I was diagnosed with pouchitis and inflamation, today I had 3BMS, and each night has been an average of one, with two nights I don’t have to get up, and one night I had to go twice.  This is better than 10-15.

    I tried the diet, food, and other home remedies.  I found out the irritatating food was food iteself.  I can not (could not) eat anything without problems.  Only after a 2-3 day fast did I start feeling better, but then started succumbing to the symptoms of hunger.

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    Rhonda Blackwell Reply:

    I am having he eight issue too. I take 8 lomotil per day and still go a lot and have accidents. Got mine in 90

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  11. avatar

    Sheila Whitson says:

    September 18th, 2013 at 6:37 pm

    Thank you for the reply. I will sure try the 2 medications you mentioned, if I can get the Dr. to prescribe without having to have another scope. I’m glad to find people with the same problems. I don’t think people understand what we go through on a daily basis.

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  12. avatar

    John O. says:

    September 18th, 2013 at 9:10 pm

    Sheila,

    Cipro as it’s commonly called is an absorbable antibiotic, and Xifaxin is a nonabsorbable antibiotic which basically “flushes” the digestive tract of bacteria.   The way it was explained to me, as my J pouch is relatively new and I’ve had the problem almost right after my take down, that the normal flora that is there has grown out of control to a point that eve probiotics would put it into balance (this has gone on for 8 months).   With our new *ahem* plumbing, the system is not self cleaning as before as the flora down in the small intestine usually goes to the large intestine where it either exits the body or is re-digested.   Without the large intestine, our bodies run the risk of the occasional imbalance.     This is in lay-terms, and explained to the best of my understanding. 

    What I do know, is that the antibiotics worked GREAT.   The down side is Xifaxin is terribly expensive and without insurance, there was just no way I could get my hands on it.

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  13. avatar

    Lisa says:

    September 18th, 2013 at 10:10 pm

    Have you tried lomotil? It works pretty well for slowing the system. Marshmallows too!! I currently have pouchitis and cuffitis and started lomotil and cipro for now. Hoping to avoid a temp ileo to let everything rest up. Symptoms for a few months. Flagyl and entocort did nothing for me and I refuse to take prednisone ever again.

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    John O Reply:

    Yes Lisa, I did try Lomotil.  I also tried every over the counter anti-diarrheal, fiber treatment, probiotics, anti-inflammatories, pro-biotics, fasting, selective dieting, abstaining from commonly irritating foods (caffeine, sugar, gluten), I tried prednisone too but at best.   If  my system slowed down at all such as with lomotil then the pouch retains something.  When that happens, the patch of inflamed tissue hurts even more so slowing things down actually made it worse.   The pouchitis and inflamation have to be tended to first before doing anything else.

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  14. avatar

    Sheila Whitson says:

    November 3rd, 2013 at 6:10 am

    I took cipro for about 2 weeks. Worked really well. I still have spells of diahrhea. Seems to stop after emptying out. I learned to eat on a strict schedule of eating about every 3 or 4 hours and watch how much I eat. Strange though, it gets bad in the evening almost everyday. Anyway, I feel  better. I go to Curves everyday. Seems to help alot

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  15. avatar

    Sheila Whitson says:

    January 6th, 2014 at 7:00 am

    After 18 years after surgery, I still have problems. But have learned to live with it. Thank you goodness for the good days. It seems like it totally depends on what eat and how much. Feel hungry all the time, but think it just a lot of gas. Gas is usually a big problem.

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    Karrine (hermedia) Reply:

    I had my takedown in 2000. 15 years later I have finally learned how to manage the iron, mineral, and vitamin deficiencies. However my immune system is hot and I like everyone else am in a constant state of sleep deprivation. I have not slept more then 4 hours in a row since 2000. 15 years and I am done. I am asking my surgeon to put me on a waitlist to go back to an ileostomy. With an ostomy i can do anything – work study Live. I am done being a slave to the toilet.

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    Rhonda Blackwell Reply:

    I have seriously been considering that. I was completely unctional after surgery so it’s fear of the unknown and the ories of my Dad’s bad experiences. Tired of toilet chasing or bedtime accidents for 26 years. Use to worry about dating with one but geez I’m51 now and been single so long it doesn’t matter

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  16. avatar

    Raymond mckeon says:

    January 6th, 2014 at 1:54 pm

    2 TBs Peanut butter spread on 2 marsh mellows.  slows down the BMs  works for me almost 3 yrs j- pouch 

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  17. avatar

    Sheila Whitson says:

    January 6th, 2014 at 2:18 pm

    Thank you for the remedy of peanut butter and marsh mellows. I certainly will try it.

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  18. avatar

    John O. says:

    January 6th, 2014 at 5:59 pm

    No Spam Please.  Thank you for understanding.

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  19. avatar

    Sheila Whitson says:

    February 17th, 2014 at 11:35 am

    Can anyone recommend a gentle laxative if you happen to have a blockage?

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    Lori Lewis Reply:

    Sheila, my husband doesn’t suffer from blockages anymore, but we always keep small bottles of grape juice on hand just in case. That has been a saving grace in the past. Works fast! We have been dealing with all of the meds, pouchitis, and new diets for over 15 years. As a spouse, it affects my life as well. I find that I jump on new ideas faster than my husband, because frankly he likes to NOT think about it. Be open to new ideas and be body conscious. I believe each person finds the information they need to hear if they are searching. We moved to another state, and a new doctor recommended a foam for vaginitis that has been great for pouchitis. Who would have ever dreamed of that? My husband followed the low residue diet for years, and as soon as he switched to a plant based, whole grain diet, his anal pain vanished in a couple of days never to return. I would say to everyone with a j-pouch or ulcerative colitis, don’t settle, keep trying new things!

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    John O. Reply:

    Hi Lori, 
    I got a notification of a reply, and I wanted to ask what foam you used?  I had this idea in the last six month as I’ve battled with pouchitis since my take down surgery.   Mostly my time has been varying degrees of “Bad” with more days being less bad than others, lately.

    Cutting to the chase, I read accounts of doing red wine vinegar shots to reduce candida floura in the lower digestive tract (this works by the way) as well as various detoxifying supplements you can get at the healthfood stores, also good.  Neither work quite as well as Cipro, and Cipro does not work as well as Xifaxin.  While I don’t want to rely on expensive meds, I have resorted to both three times in the past 9 months.  The idea of being able to eat grain &plant foodstuffs is appealing!  I (used to) love my veggies.  My reading and research led me to believe that Candida (a type of yeast) that is reduced by Vinegar (a waste product of fermentation caused by yeast cells) would respond to certain anti-yeast treatment, perhaps.   ANyway, having been through a lot, I see no harm in trying.

    As you say, everyone is different, and I’m willing to try if you could remember the name or product you used, I can take it from there.

    Thanks, and good luck!
    John

    [Reply]

  20. avatar

    Shana says:

    May 20th, 2014 at 7:25 am

    Had a J-pouch since 1996 and am convinced that the right diet will reduce frequency. I currently go about 6-10 times per 24 hours and take one Imodium tablet per day, but try to skip a day here and there. I also take about 2-3 tablespoons of Psyllium Husk Fiber (which is similar to Metamucil) per day. My biggest problem is leakage! I find that if I don’t eat anything at all, or very little, the leakage is worse! The idea is to eat in moderation, which is my main problem, as I love to eat, and if I really enjoy something I’ll eat more than one portion at a time! In other words, even “safe” low calorie foods, will increase your frequency if you eat a lot of it in one sitting! I find that RAW vegetables, milk, yogurt, too much chocolate or excessively sweet foods, or too much roughage can be real bad. I also think that you need to eat some “fatty” (but healthy) foods too. My best days are when I eat “normally”, that is, not in excess. For example, for breakfast, if I only eat one scrambled egg with olive oil (good fats), 1 slice bread, and cranberry juice with psyllium husk, I’ll do really well for the next several hours. It seems important to eat small meals every 3 – 4 hours. I sometimes go on a binge, and I know I’ll suffer for it later, and I do, but at the time, I’m enjoying myself, heh. I just know that if I had great self-control with food, I could probably even eliminate Imodium. Would love to hear about J-pouchers who can go only 3X a day without any medication whatsoever, and how they do it!

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    John O. Reply:

    I am not a moderator, but no spam please.  Be on topic, there are people trying to get help here.

    [Reply]

  22. avatar

    Sheila Whitson says:

    June 15th, 2014 at 4:48 am

    If I don’t to much I’m fine. Have so much weight from what i’ve been eating. Wish I knew what be a good diet for someone like me. I am also diabetic. I cannot figure out what to eat

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    John O. Reply:

    It sounds like you have a lot of work ahead of you, but your post is off-topic for this thread.  You may look for another thread that deals with dieting, and people with diabetes.

    [Reply]

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    Kris says:

    October 28th, 2014 at 10:47 am

    I am only 3 months post op and am not doing well. the itch and burn and frequency is almost unbearable. I can’t believe the length people have been dealing with these same issues. Once I start going it doesnt stop. Albeit 7-1pm is quiet, but after that once I will feel finished, get off the toilet, then get a sharp pressure coming out and have to go again. I will definitely go back to the bag if this doesn’t get better. With the bag I slept like a baby, ate whatever I wanted. For some reason the awkwardness of the bag was less emotionally draining them constant rectal discomfort and un predictability. I am in my forties only and still I think I would rather have the bag. I will give it longer but not three or twelve years.

    [Reply]

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    John O. Reply:

    Hi Kris,

    I feel your pain, rather, I have felt your pain.   To make a long story short, I posted options in this thread already.   Here they are (short form)

    1.  Get your surgeon to pay attention to you, and properly provide you adequate post-op treatment.  This did not happen for me, so don’t push them into a corner.  If it can’t be solved with a scalpel, many surgeons don’t bother. Sad but true

    2.  In this case, return to your gastroenterologist. If they don’t help you, find someone who will.  This will cost, particularly a pouchoscopy (endoscopy of your J Pouch).  There may be another term for this.  A good doctor won’t do anything for you until they identify / verify the problem, this is how.

    3.  You probably have pouchitis.  My GE said “nobody gets pouchitis anymore” and I was found to have a particularly bad case of it.     They take pictures, and may take biopsies.  Since your surgery was fairly recent, they probably won’t take biopsies since the tissue removal will only make ihurt
     more.

    4.  Over the counter treatments (not cures)  An insertable hemhorrhoid cream… this will definitely hurt the first few times, but will reduce swelling and pain and may help you sleep at night after a couple of days of use (use only as directed…seriously, more is not better)  Be careful and only do what you can with it.
             Zinc oxide cream (diaper rash) will help exterior inflammation

    [Reply]

    avatar

    John O. Reply:

    Hi Kris,

    I feel your pain, rather, I have felt your pain.   To make a long story short, I posted options in this thread already.   Here they are 

    1.  Get your surgeon to pay attention to you, and properly provide you adequate post-op treatment.  This did not happen for me, so don’t push them into a corner.  If it can’t be solved with a scalpel, many surgeons don’t bother. Sad but true

    2.  In this case, return to your gastroenterologist. If they don’t help you, find someone who will.  This will cost, particularly a pouchoscopy (endoscopy of your J Pouch).  There may be another term for this.  A good doctor won’t do anything for you until they identify / verify the problem, this is how.

    3.  You probably have pouchitis.  My GE said “nobody gets pouchitis anymore” and I was found to have a particularly bad case of it.     They take pictures, and may take biopsies.  Since your surgery was fairly recent, they probably won’t take biopsies since the tissue removal will only make ihurt
     more.

    4.  Over the counter treatments (not cures)  An insertable hemhorrhoid cream… this will definitely hurt the first few times, but will reduce swelling and pain and may help you sleep at night after a couple of days of use (use only as directed…seriously, more is not better)  Be careful and only do what you can with it.
             Zinc oxide cream (diaper rash) will help exterior inflammation
              Keep taking your fiber, find a fiber that works for you though.  I like Yerba Prima, which is at health food stores like Whole Foods, Sprouts, etc. It is unflavored, and has no sugar.  Sugar can be bad, leading to candida infection (yeast) which is what cases my pouchitis.

    5.  Typical prescriptions include Xifaxin and Ciprofloxacin.  I had to go through four courses of each before my pouchits would stay away.    I don’t need cipro at all anymore, but I have had to refill Xifaxin a couple times as I have a tendency to get candida build up, and this is the one thing that cures it 100%  if you don’t have insurance, Xifaxin is high dollar.

    [Reply]

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  30. avatar

    mary beth says:

    March 14th, 2015 at 2:17 pm

    My daughter had her jpouch takedown surgery 10 days ago. She is having a horrible time going 20 plus times in 24 hours, half at night. Yesterday she went 27. She only goes a little bit at a time, as if she´s not emptying all the way. She also has urgency and quite a few accidents, even during the day. The last few days her stool has been pretty loose as compared to days ago when it was pretty formed. She is on the max Imodium (8 a day) which I don´t think does anything at all. I have tried Metamucil, FiberCon which don´t seem to help, now trying Citrucel. The GI and surgeon seem to pretty surprised by this and she will be getting a scope next week to see whats going on. They suggested starting her on Flaygl but I´m a little hesitant since they don´t know for sure what is going on. They said its very early to have pouchitis which also concerns me. Does this mean she´ll always have problems with it if it is pouchitis?

    Shes on a bland diet like everyone suggests but has been eating quite a bit of cheese which she tested sensitive to when I took her to a Naturopath before her colectomy. Maybe this is causing the loose stools?  

    We are getting pretty frustrated as this has been worse than her UC. I am wondering if anyone else has went from 20 plus stools to a reasonable amount?  Also wondering if her lack of control will always be a problem or will she be able to regain control?

    This is all so scary but it´s nice to have resources like this with people who are experiencing it.  Any advice or insight would be great!  

    Best of luck to all of you.

    [Reply]

    avatar

    Shana Reply:

    I’ve had my J-pouch since 1996, about 20 years ago when I was 41, and I remember that first year very clearly, going to the bathroom about 20 or more times per 24 hours, and the terrible leakage. My greatest source of comfort were internet groups like these that reassured me it WILL get better, and that it can take a year sometimes to see major improvement. There was no way I wanted to go back to the ileostomy bag, so I hung on, trying all sorts suggested remedies. Even though I still suffer from leakage and go about 6-10 times per 24 hours, (on bad days, more like 12 or more times a day!) no one would ever know that I have a problem, as I am extremely active, going biking, hiking, walking, etc. (But of course no one knows that I can only go when my insides feel “right”, and that I can’t travel to places where there won’t be a bathroom!) Every day I would say I have a total of 2-3 bad hours, which is pretty good considering the other 21 are fine. Over the years I have found that 1-3 tablespoons of Psyllium Husk fiber by Yerba Prima and one Imodium a day makes a big difference, as well as figuring out which foods are to be avoided. A big no-no is eating large amounts at once, which unfortunately I have no self-control about. For example, one banana, although healthy and probably OK to eat, will create a lot of output! My problem is that I will eat a banana and more healthy foods at a time. It seems like the intestines can take 2-3 days to totally empty out, as I sometimes see food that I have eaten a day or two before floating around the toilet, lol. Sometimes I am amazed at how much output I have, and it’s not like I’ve had a lot of calories, just foods with high volume like fruits and veggies! When I skip my Imodium for a day or two, I definitely notice that I get worse. Would love to get off of Imodium, but I hear that it’s a very benign drug. I just don’t like to be dependent on anything.
    And yes, there are times when I say that this is worse than the UC I had for about 20 years, but then again, when I was finally feeling great at age 41, I was diagnosed with colorectal cancer and had no choice but to remove my entire colon or else I wouldn’t be here to complain about it! 😉 Mary Beth, I know your daughter will get better. It’s still way too early to lose hope.

    [Reply]

    avatar

    jamie Reply:

    Hi .. sorry to hear about your daughters trouble the post was a few months back so hopefully it is better .. I’ve had my j pouch for 21 years and it gets better .. I still have leakage especially at night. I rarely sleep through the night. If I eat before 4 pm I usually don’t get up more than once . Sometimes not at all .. so try to eat light and early .. also I clean my pouch out sometimes to get the bacteria out. Use a fleets enema . Empty the liquid that it comes with and use warm water . This will help empty the pouch and also keep out bacteria which causes pouchitus. .

    [Reply]

  31. avatar

    John O. says:

    March 14th, 2015 at 2:47 pm

    Hi Mary beth.

    Sorry first off for the run-on paragraph, website won’t let me use the return button, or even double space. She probably has pouchitis, but that won’t be said by the Dr. without a proper scope. As far as being surprised, they always are. Fact is that accidents are common at first, the body is learning how to do a new thing. The tissue has been healing for months, and now it’s put to work and that is irritating it. What I take is Yerba Buena fiber (fine grind, psyllium husks, no sugar or falvoring of any kind, pure fiber) it mixes with anything, sometimes I take both that and methylcellulose (Metamucil) water soluble fier. As the doc for topical hydrocortisone, this is different than store bought, that will help with hemmorhoids or any sore tissue from high frequency BM. Don’t forget zinc oxide (diaper rash cream) for the skin surrounding the rectum, avoid butt burn as much as possible. Pouchitis is treatable with Xifaxin, I have been on and off the stuff since my take down October 2012. My first year was hell, and I’m still not fully adjusted but I am doing quite a lot better than pre-surgery. Keep your chin up, and don’t quit.

    [Reply]

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  33. avatar

    Kim says:

    June 20th, 2015 at 5:08 pm

    Hi all! I’m hoping I can find an answer to my problem. My takedown was in August 2012 and since then outside of going to the bathroom quite a bit, dealing with night leakage which has led me to wearing depends to bed just incase and a sore rear I have now come about a whole different issue. I apparently have a stricture (blockage), I don’t see the doctor until Wednesday but given what my symptoms are he is telling me this is what’s going on. Has anyone experienced this and can you tell me what the treatments like and is it done in the doctors office? I appreciate any feedback.

    [Reply]

    avatar

    John O. Reply:

    Asked and answered.

    Forums are helpful because occasionally people post useful information, but it requires reading the forum.

    If you scroll up, your questions were addressed a long time ago (by me).

    [Reply]

  34. avatar

    Miguel says:

    July 21st, 2015 at 6:02 pm

    Hi! My take down was in 2010. I had beetween 12 and 18 bm at first as my jp ouch got use to all the food, but no matter what I ate I still had between 8 and 12 bm then I noticed that when I took my pain medication wich was hydromorphine I had literally no bm for about 4hours I talked to my dr about this and she prescribed tincture of opium and I must say that stuff works miracles I take about 1ml when I go out or or am running around and don’t even get the edge to use the restroom and it helps when I have a flare up or diarrhea even if eat I still don’t get urge to go .. Something to try if your having many bm and nothing seems to help

    [Reply]

  35. avatar

    John O. says:

    July 22nd, 2015 at 9:54 am

    Opium based drugs induce constipation. I included a link to an article from the NIH.
    My leftover pain pills did the trick as you say (Lortabs and Norco) but I prefer avoiding addiction personally.

    [Reply]

  36. avatar

    David Brickell says:

    October 17th, 2015 at 4:42 am

    I recently tried Lomotil (prescription) and was surprised to see that at two doses a day my BM’s went from 10 or more to 1-2 a day.  Immodium at 4 doses a day only dropped BM’s to 8 minimum.  The downside is that Lomotil is a little sedating but over the course of 3 months have dropped dosage to 1 with dinner/ that’s once a day with about 4 BM’s/ a worthwhile tradeoff so I can stay alert and feel totally normal during the day!  Due to Lomotil being a stronger opiate you may feel some withdrawal when skipping a dose or cutting dosage as I have.  Because it is a prescription the opiates will probably trigger a drug test screening so it is best to have proof of prescription to explain why.  Lomotil has also allowed me to get a full 7-8 hours of sleep and I am holding on to water and am actually sweating like a normal person (which is good and shows I have water to spare.  My skin/especially nose have also become close to normal already and my poor pealing nose is cured.  No more dehydration issues.  Yeah!
    BTW…Transferrin has also helped with iron deficiency but I only have to take when things are flaring up which is rare.
    I have also used chia seeds which absorb 25 times their weight in water which still stays inside you in a usable form but is transformed into a much more solid sponge. (take them with 1/4 the recommended water or less/ be careful because it can expand in your esophagus if too dry and swell and choke you)
    When experimenting go slow/ everybody is different and I hope these tips work well for you!

    [Reply]

    avatar

    John O. Reply:

    Lomotil is a synthetic, not an opiate and is therefore not addictive as such. More correctly it is a combination of diphenoxylate and atropine. Although chemically related to natural narcotics, Atropine in such small dosages in Lomotil is not enough to cause addiction unless taken in excess.

    Source:www.medicinenet.com/diphenoxylate_and_atropine/

    [Reply]

  37. avatar

    David B says:

    October 17th, 2015 at 4:13 pm

    I am so happy somebody took the time to let me know that lomotil is a synthetic and thus not addictive.  Some people claim withdrawal like symptoms when stopping; I am among them but it might just be a placebo effect.  None the less I am happy about it not being addictive and will not hesitate to take 2 when I feel the need!

    Thanks again.

    [Reply]

    avatar

    John O. Reply:

    You are welcome.  I really like lomotil but I only use it rarely because it doesn’t work for me long term.   I have had pouchitis and repeatedly had it treated, and have worked very hard and don’t have it as good as some.  But, I am happy to say that if you commit yourself to wellness you can do it. “Things will get better” My doctor said, he was right-in.  Take down October 2012 (3 years)

    [Reply]

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  39. avatar

    Susan says:

    December 31st, 2015 at 4:41 pm

    Codeine phosphate soothes as well as slows down my jpouch. I know there’s the danger of addiction with codeine, but I think it’s worth it as I only take 2x30mg per day.

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  41. avatar

    Jim V says:

    January 2nd, 2016 at 11:06 am

    I had my jpouch surgery in 2012. There have been some setbacks along the way, but overall, I feel good about the procedure. One question I have for my fellow jpouchers is this…how many others have experienced complete blockages? In 2015, I had to spend 4 days in the hospital on 2 different occasions due to my intestine looping and becoming blocked. The cramping that ensues is horrible, and then the vomiting is even worse. On both occasions the doctor inserted a nasal tube down into my stomach. After a couple of days of having my stomach pumped, my intestine will unkink and things are back to normal. My doctor cannot give any real good reason this occurs. Perhaps someone else can share some insight. Thanks

    [Reply]

    avatar

    John O Reply:

    While I have not suffered a complete blockage, I do get partial blockages fairly frequently and this has led to several occasions of pouchitis which is no fun.

    Keeping to a strict (that is, a very regular) intake of concentrated fiber, Yerba Prima is my favorite, no sugar added nor flavor, this keeps it at bay. Something else that has helped with partial blockages, such as when I eat too much or if I eat vegtables (still a problem) or raw fruit like apples, is a night time dose of mineral oil for one or two days. Again, it may not solve things but it has worked as a preventative measure. It has all been trial and error for me.

    [Reply]

  42. avatar

    Michael W says:

    January 11th, 2016 at 7:29 am

    My son is 11 years old.  Had total colectomy February 2015 and take down in June 2015.  He continues to have stools in high 20’s to mid 30’s per day.  He was diagnosed with pouchitis in December 2015 and is currently in cipro +  fibercon as well as Imodium, prednisone, etc. We are to try this routine of cipro and fiber for the next 2 weeks and the doc may try a opium tincture to slow things down.  Anyone else have had experiences of frequency of this nature and what worked?   The above post have been very helpful – thanks for all the collective experience.  

    [Reply]

    avatar

    Mary Beth Reply:

    Hi Michael,
    I am so sorry you are dealing with this, I know all too well how you feel. My daughter, now 18, had total colectomy Jan 2015 and takedown March 2015. She too had very high frequency (over 20 per 24 hours) for the first few months. The surgeon said it was not that common and worried that she would never get under 10. 7 times a day is success in his eyes. Well, 10 months post takedown she goes 5-8 times a day. Sometimes more if she ate something she shouldn’t have. She was on Flaygl once for a week because her GI thought she had pouchitis. She also had a rough few weeks recently after she was prescribed Cephalexin for a cyst. It triggered major watery stools and frequency and even a little blood. Scared the hell out of me. Her doctor was worried it was C-diff but thank God it wasn’t. It seemed to clear up on it’s own. So just FYI, be sure in the future to not give your son antiobiotics without consulting his GI. Apparently some antibiotics can cause C-diff which I was not told! 

    As far as things to help slow him down.  Imodium never worked for my daughter even taking up to 8 at a time. Lomotil worked a little but made her drowsy. Fibercon didn’t do much either. Metamucil helped thicken her up and slowed things down a bit. Food is a big factor. EVERYONE told my daughter to keep a food journal but she wouldn’t. Now she’s away at college as a freshman in a dorm so finding food that works for her is difficult. She thankfully can eat raw veggies but it’s better if she has meat or starch along with it. She stays away from sugar and finally accepted that she can’t do dairy. She goes to a functional med doctor as well and he said the harder the dairy the less lactose which is what causes trouble for some with jpouch. So no milk or soft cheese. She can do Parmesan cheese and plain yogurt. 

    The worst part is that she was waking up 3-4 times per night to go and being in college, that’s tough. She has tried every over the counter and prescription sleep med out there and nothing works because her intestines are active and that wakes her up. My sister persuaded me to give her a medical MJ pretzel she had since her husband used it when he had cancer.  THAT did the trick! When she uses it she can sleep the whole night without waking up or she may get up once. That is HUGE. The reason it works besides relaxing her is because it actually slows down the digestive track. I’m not suggesting you give it to your son, he’s very young. But you may want to look into CBD oil. We are in the process of getting her a medical MJ card but in the meantime we found that CBD oil helps. It has all the benefits of canabis without the THC. My daughter thinks it works and it helps her sleep. Again, it slows down the intestines. It also reduces inflammation among many other benefits. I think of it as medicine and it’s go WAY less side effects than some of the stuff the doctors prescribe.

    Does your son take probiotics?  We found out that along with probiotics that it helps to take FLORASTOR (s-boulardi). It’s a probiotic but it’s a yeast, not bacteria that her dr recommended. When she had the issues from the antibiotic I loaded her up on it and it really seemed to calm things down. It is suppose to help with diarrhea. http://www.healthline.com/health/what-yeast-is-good-for-the-gut

    If you’re on Facebook there’s a very helpful group called The J-Pouch Group. Very good information and great support. There’s also another good forum, jpouch.org.

    My daughter is doing better and keeps improving even with a very tough schedule at college. She takes several supplements and her probiotics which I truly believe is helping her heal. No meds. Your son will improve too. One good thing is that he’s still under your roof so you have some control on what he eats etc. Good food choices are key in my opinion. Like I tell my daughter, there’s not a lot of time for nutrients to be absorbed so make sure you put mostly good stuff in.

    Good luck and try to stay positive. I know it’s so tough. They say at least a year or two before the pouch functions properly. I still get depressed thinking of my daughter having to deal with this but it does get better. There’s more good days than bad now that she’s 10 months out. You’re son will get there!

    [Reply]

  43. avatar

    Mary Beth says:

    January 12th, 2016 at 6:41 am

    Hi again Michael,
    One thing I forgot to mention is that my daughter had Bio Feedback Therapy which her surgeon prescribed. I think it really helped reduce her frequency. After the first session her frequency went from 12 (ish) to 8 (ish) a day. They put sensors (not sure exactly what they’re called) right but the anus and hook up to a monitor and then have them do specific “exercises” which helps them be able to control things. Basically kegal exercises but the visual on the monitor helps too. Sometimes my daughter feels the urge to “push” and when she does she said afterwards its like opening up the flood gate and she’ll have more urgency/frequency. When she does the kegal exercises it helps tighten things up again. I would highly recommend asking your sons surgeon or GI to prescribe bio-feedback. Good luck!

    [Reply]

    avatar

    Michael W. Reply:

    Mary Beth – 

    Thanks soooo much for taking the time to reply to my post and providing some great suggestions!  I am glad to hear that you daughter is figuring out how to live and manage her jpouch.  

    Your suggestion on MJ is very intriguing as Georgia just passed a medical MJ law for a select set of ailments. Chrons was one of them, so not sure if my son would qualify, but I am looking into it.  I would much rather have a natural substances than all the synthetic pharmaceuticals and awful side effects and increases in cancer risk that he has been on since 6 years old.   The only problem with the State law is it makes it legal to possess the beneficial oil, but it is still illegal (federal levels) to import it.  Hopefully they are working on a fix this legislative session.  

    Until then, I will try your suggestions in diet and probiotics.  Once again – I sincerely appreciate you kind reply and wish you and your daughter the fullness of life!  

    [Reply]

  44. avatar

    Mary Beth says:

    January 12th, 2016 at 12:29 pm

    Michael,
    Your welcome, it is so hard to see our kids suffer so I’m thankful for all of the great support I’ve gotten and happy to pass along anything we’ve found helpful. You may want to stop by a MJ dispensary, that is where I bought the CBD oil. We are from Michigan and the laws are similar to yours I think but somehow it’s legal for the dispensary to sell it, at least thats what they told me. I just stopped in there today because the paperwork for the card is confusing. I asked him the same thing, that it’s approved for Crohns but not UC which my daughter has (had?). He said her doctor can explain why she needs it. Also one of the accepted things is nausea which my daughter does have from time to time. It’s crazy to me that I can easily get strong and dangerous narcotic drugs for my daughter just by calling her surgeon or GI but to get something natural without horrible side effects is so hard! She was given Ambien for sleep and not only did she still wake up several times to go to the bathroom but she had blackouts, would say crazy things and not remember and got VERY depressed to the point she didn’t want to be alone! Very frustrating.

    Also look into Manuka Honey, its a natural antibacterial. There’s a lady on the FB page that had chronic pouchitis and cuffitis for years and her Dr wanted her to go back to a permanent bag. She started using the honey for strep throat and noticed her pouch started to get better. She is now antibiotic and med free, just using the honey for maintenance!  It’s very expensive but to me worth it. I ordered mine as our health food store doesn’t carry the stongest kind. My daughter loves the taste but forgets to take it. But with your son being at home it might be worth a try. You can search “manuka honey” on the FB page and you’ll find more info. Her name is Corina Roche and I know she’d be happy to talk to you. Others use it as well. Anyways, just something else to look into. The J-Pouch Group literally has thousands of members, some that have their pouches for 30+ years and it’s always up to date so you get quick replies to questions. Its been a blessing to me. Sorry for the long posts!

    [Reply]

    avatar

    Lesley Reply:

    Searched Facebook but cannot find the group. I’ve had a pouch since 1981 and still sometimes wake up 3 times a night. Generally it’s 1-2. I’m ok with 1 but if it’s 2 or more I’m tired the next day. I’ll try the Metamucil. I haven’t used anything up til now.

    [Reply]

  45. avatar

    Mary Beth says:

    January 12th, 2016 at 12:45 pm

    Michael, FYI I was just on the FB page and someone recently posted about the honey! I’ve found that doctors don’t know nearly as much about the pouch as some of the people on the page as they live with it. I’ve about given up on medical doctors, we have to educate ourselves on options other than antibiotics etc. :)

    [Reply]

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  50. avatar

    Michelle murray says:

    January 2nd, 2017 at 5:36 pm

    I had my takedown on Sept 2016 due to FAP (familiar adenomatous polyposis) so I have no nerves as rectum had to be taken. I have had nothing but bother since been hospitalised twice. Ive been on many creams and ointments my bum has been ulcerated twice and seems now i have a pile hanging outside of my bum. My BMs can be between 7-15 times sometimes my output is ok and other times it just sits there just recently ive had to strain( im thinking constipation)? To get it out as i get really irritated just starting to get worse another problem I have is it gets really itchy and that’s when I know i need to go to the toilet and itchy after is this normal. Ive only had 4 good weeks where everything settled then back to sore bum. Also does eating a lot of meat make you constipated. I was much more happier and content with stoma I knew what I could n couldn’t eat any help would be great

    [Reply]

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