Making a decision on J pouch surgery

I eat Indian food all the time and have no problems with it! Some of my favorite dishes are onion bhajia, lamb korma, saag paneer, and chicken tikka masala.

Butt burn is a very individual phenomenon.  I only had it 1-2 years after takedown, pretty much regardless of what I ate, and never since.  The reason for butt burn immediately post colectomy is the excessive alkalinity of the stool due to the sudden shortening of the digestive tract.  In many cases your body adjusts the pH levels over time before stool reaches the J Pouch.  With some people, spicy food is a problem, but I eat all kinds of spicy food and do not have any problem with it.

Best case scenario is you will not have butt burn and will be able to enjoy spicy foods.  Worst case is you have to tone it down.

BTW, 29 is the exact age at which I got my J Pouch. I am now 57.  28.5 pretty good years.  I have had to treat pouchitis/Crohn's inflammation, but its been treatable and my quality of life is high.

Best advice I can give you is that everything is trial and error.  Choose a good surgeon, someone experienced with doing J Pouches, and understand that as you heal your experience may have some commonalities with others but may also be unique.  There are no hard and fast rules on what works and does not work well in terms of foods or meds, so your body will become a private laboratory, so to speak.  It will also adjust over time, so that what you could not eat or digest early on you may be able to later. Good luck with your experiments!  One last thing- don't make judgments about things like butt burn based on what you read on this board, which is a support board for those with problem J Pouches.  The posters here do not represent the universe of J Pouches, but mainly the universe of problematic J Pouches.  The people who have great J Pouches do not need support and, for the most part, do not come here.

@GGP Like CT I enjoy very spicy food without restraint. Lamb vindaloo is my go-to Indian food, and I order it *hot*. I might have some experience of it on the way out (leftovers?), but nothing to fuss about. Everyone’s experience is different. Good luck!

Thanks for a very informative and helpful post barrister.

it’s refreshing to see you can enjoy Indian food also. See with my bag I am able to eat pretty much anything and atm eat pretty spicy food also without problem, although I remember worrying about not being able to eat what I wanted to with the bag. I understand that with a pouch the result may not be the same with the bag but I’m confident my body will adjust after the initial period and hopefully I can enjoy my food.

im prepared for initial Butt burn and understand why that occurs so will hopefully be able to brave it. I’m from UK so not sure what cream they will give me, but calmoseptine is commonly spoken for USA ?

28 years that’s incredible! Long may it continue.

yes my surgeon is very experienced in doing this surgery and has done 100+ I believe and is well regarded.your last point is a very good one. I like to be well informed and educated about things and have done a hell of a lot of research about this procedure, even watched the whole surgery! But your right the people with little to no problems will not be posting here. I just worry of all the things I have read I may be that unlucky one!

was your connection done double stapled or hand sown? I believe mine is double stapled which is more safe and less traumatic to the anus region.

apologies if my responses are scatty, I’m just typing out whatever I can remember, lots to think about atm.

@Scott F wow even I don’t eat vindaloo strength! Interesting to hear. It’s crazy how it’s so different for everyone. I wonder if because my body is used to spicy food it will cope well with the j pouch ? Maybe there is no correlation to that though.

in terms of your 2nd and 3rd surgeries anything that stands out? Pain or difficulties etc

GGP,

You have to realize my procedure was done in 1992 which was 28 years ago, so I do not recall all specifics, but my understanding was that "dissolving sutures" were used.  The thing I remember most was that my surgeon (Irwin Gelernt, who back in 1992 worked out of Mount Sina Hospital in New York City and carried the reputation as the best colorectal surgeon in the USA) looked me in the eye and told me that I should consider banking my sperm because I was 29 years old, single and the procedure does carry a risk of permanent and temporary impotence (which I was told were 2% and 10% respectively then-maybe lower now).  That risk never came home to roost on me as I achieved an erection fairly soon after recovering from the surgery, and while still in the hospital.  It was, needless to say, a happy moment in my recovery.

Calmoseptine is highly recommended and widely used to treat butt burn.  Mine was not too bad and I got by with A&D and Desitin zinc oxide ointments.  You have to realize that with any zinc oxide ointment, the higher the % of zinc oxide is, the thicker the ointment, and the thicker cream which will essentially caulk your butt cheeks together.  Original Desitin is the thickest, it is around 40%.  I found 10-15% preparations, which are creamier and less thick, but have to be applied more, worked best for me.  Desitin, A&D and others make variable % zinc oxide ointments.  I would recommend trying Calmoseptine first, based on feedback I have gotten from others.

On the theory that handling spicy foods before surgery meaning you have a good chance to handle after surgery: it depends on how your body will adjust and adapt your pH levels.  Like I said, I had butt burn frequently for around 1-2 years after surgery, and not since.  My body adjusted.

Good luck to you and it sounds like you are taking the proper steps going into surgery.

@GGP I have no experience with the 2nd and 3rd surgeries, since my whole thing was done with one (stapled) procedure. Most people do better with stapled procedures, but some folks do get inflammation in the rectal cuff (“cuffitis”) that must be left intact for that technique. There seems to be significant variation in how the recovery from each surgery goes.

I do not have experience eating Indian food but I definitely cannot have spicy food. I will say this, both surgeries have risks but I think if you can live with an ostomy and be compltely happy with it, I would say keep it. If you are one of those people that has to try a J-pouch and does not want to wonder, "what if", then I say try the J-pouch.

I had a 2 step surgery and I am at 6 years now. I have had no major complications with my pouch, I get constipated if I overeat 2 days in a row but I am monitoring that now. I never had pouchitis either. I go 14-20x a day and I am happy, no regrets

**I sent you a personal message**

I'm 6 weeks out from takedown with a jpouch,it's not easy but wild horses couldn't drag me back to the bag.Im in abit of pain where the ileostomy was stitched together.

@Former Member fair play, how did you find the 2nd surgery? You mean where the loop ileostomy was created? How many weeks since your pouch surgery and how is the recovery going? Do you feel it was a bigger op than having your colon removed?

I had 3 step surgeries, and had my loop for 8 weeks.  I personally did not have any big issues with the loop.  The only thing I remember was having some difficulty with changing the bags because the loop was more active than the end ileo.  But it was short lived so not so bad!   Good luck!

Also I have a stapeled pouch.  I haven’t had any issues with it so far.  I did use Calmoseptine for the first 6 months or so for butt burn.  I started right after takedown at the hospital, after each bm.

I had the 3 step procedure due to quick onset uc at age 40.my first surgery was hard as I was very unwell.7months later I had the jpouch created,it was a huge surgery with a drain coming out my jpouch area plus a bum and penis cafaters ,iv line in my arm and a ng tube was placed later down my nose.which was the worst part .

The whole area was swollen and bloated which made the bag leak 3 or four times a day as the swelling went down which is very annoying but a convex dansac with a belt helped.i didn't have much pain and my stoma stuck out well so there was no skin irritation.

Then 6months later I had the takedown which was just went in on the friday afternoon and they sent me home on the monday.the wound is left open and tightly stitched like a drawstring which feels sore and was healed after 4 weeks .i had multiple near blockages but peppermint tea cleared them.I

I'm 6 weeks out now and it's been hard ,I used a bidet bottle, dab of toilet paper then,sudocrem or calmoseptine and a hairdryer for butt burn .the gas pains have decreased and I can fart lying down and the nighttime accidents seem to have been from farting while asleep which I havent done for 2weeks now.

It's a hard road but if you have a good experienced surgical team and positive mindset you will be ok.

Twenty years since 1st of two step surgeries.  No problems.  I eat and drink whatever I want.  Having had to deprive myself of raw veggies and especially salads for years prior to J-pouch surgery, large salads are my favorite food!  Early on I learned to apply Calmoseptine or a creamy baby butt cream PRIOR to eating spicy foods.  Be prepared was my motto!  Haven't had to use anything for years and years.  Love my J-pouch!

Hey GGP go for the jpouch.as long as you have experienced surgeons.I live in New Zealand that has free healthcare but it's a very stingey system and they wouldn't do it unless it had a higher rate of quality of life.its a $100000 surgeries so they wouldn't do it unless it's worth it and 6 weeks out I wouldn't be happier,Long Live the Jpouch!!!!!!

Great replies and insights guys! I am indeed going for the pouch, I know it’s going to be tough, but at 29 I feel there’s more to life for me, and god willing I get that extra get of freedom many speak of after having the pouch.

@GGP posted:

Great replies and insights guys! I am indeed going for the pouch, I know it’s going to be tough, but at 29 I feel there’s more to life for me, and god willing I get that extra get of freedom many speak of after having the pouch.

You are welcome and Good Luck! PM anytime you have personal questions! I get PMS all the time and I always respond if its nice

Well guys I thought i would provide an update on my situation.

after all the delays with COVID I finally have my surgery date of 24th may for my j pouch operation.

scared but finally glad iv got a date and can plan for the future. Any tips to prepare for the upcoming op? I need to get a bidet bottle and some cream for butt burn, anything else?

@GGP posted:

Well guys I thought i would provide an update on my situation.

after all the delays with COVID I finally have my surgery date of 24th may for my j pouch operation.

scared but finally glad iv got a date and can plan for the future. Any tips to prepare for the upcoming op? I need to get a bidet bottle and some cream for butt burn, anything else?

Good luck dear

Right so I managed to get through the second surgery! It was a tough week especially not being able to have visitors but am grateful the operation has gone well and I am now home.

the operation was on Monday and I was out by Saturday.

since then Iv slowly been recovering, initially I was getting some bleeding from the backside, this has since calmed down but I still have things passing through the back end. My surgeon says this is normal as some stool can passs down into the rectum now the pouch has been formed.

otherwise in good spirits and will have a pouchagram in around 4 weeks to check for leaks.

im very relieved this big part of the surgery has gone well and no complications as yet. In addition the surgeons did not need to make a vertical cut on me just went in on the same horizontal cut made from first surgery so was very happy about that.

Good to hear your surgery went well! I hope your recovery goes smoothly.

morning all,

Recovery is still on track but just wanted to ask if anyone else has experienced continued discharge from back passage after 2nd surgery?

with me when I go for wee or empty my bag I will have the urge to release the discharge from back passage , which I do. But also sometimes I get a bit of leakage unknowingly in the day or overnight. Is this normal or any indication of anything?

Yes I had that some days worse than others.they said it was from the UC in the remaining part of the colon.i was told that even after the takedown there is a small part of the colon left that can develop polyps but only in a handful of people world wide.

@GGP posted:

morning all,

Recovery is still on track but just wanted to ask if anyone else has experienced continued discharge from back passage after 2nd surgery?

with me when I go for wee or empty my bag I will have the urge to release the discharge from back passage , which I do. But also sometimes I get a bit of leakage unknowingly in the day or overnight. Is this normal or any indication of anything?

Sometimes I had leakage back in the day, hope it gets better for you.

It seems on and off for me. Some days not much discharge and others a bit more. I think it’s quite normal and nothing to worry about.
next step is pouchagram 30th July.

I have bidet bottle and soudo cream ready!

@GGP posted:

It seems on and off for me. Some days not much discharge and others a bit more. I think it’s quite normal and nothing to worry about.
next step is pouchagram 30th July.

I have bidet bottle and soudo cream ready!

Sounds great! Enemas help with leakage just incase your leakage gets out of hand. I do the enema thing on my dad and it keeps away his leakage very good!

Just incase sudo cream does not work, would definitely recommend Calmoseptine cream or the generic brand at Walgreens right next to it in the incontinece section. That is the best stuff I have ever used

Good luck on surgery hon

Yes, rectal drainage is expected and normal when you are diverted. Some stool can slip by the loop ileostomy (not a sign of anything wrong). Plus, the diverted bowel will still produce mucous that is shed. This is particularly difficult to maintain continence with. Frustrating, to be sure, but normal!

Jan

Sudocreme is more for when you have no butt burn ,calmoseptine is a must have for butt burn.my first two months I used a bidet bottle , calmoseptine and a hair dryer.butt now I just put sudocreme on each morning after my shower and go to the toilet normally .I think the trick is after takedown don't wait for the butt burn to start but put a cream on.good luck and it's great to be prepared.

Well explained Jan, exactly how my surgeon described to me.
I am in the UK so not so sure how easy it is to get hold of calmoseptine il check it out though as people swear by it on here.

I could only buy calmoseptine off amazon.they sell sudocreme in the baby isle.

Evening all,

just wanted to provide an update on my journey. My takedown was done 23rd august and today I’m currently in a very good position. The initial months were undeniably tough but each week I have seen improvements.

currently I am going around 8-10 times a day with one visit at night. Overall I am super happy with how things have gone and have recently started some light exercise. It’s great to be living life without a bag!

so at 3 months along from my takedown I’m just wondering whether I will see further improvements in my pouch function as time goes on? What was your experience of this? Did you see further improvements after the 3 month mark?

You should see further improvements as the pouch is still expanding and will continue doing so as long as you resist the urge to evacuate as long as you reasonably can.

Sure, I do try hold on a bit but sometimes the urge is quite strong. May experiment holding on a little longer, without pushing it too much of course lol

GGP,

Just hold it until the urge to evacuate is not possible to resist. Don't go at the slightest urge though.

Yh that’s pretty much what I do. Like sometimes you’ll get urges that are caused by gas build up, I sit through that for a bit until it gets too much, then evacuate.

I’m eating pretty much what I like within reason. Do get quite a bit of gas. Does the pouch learn to deal with the gas better over time or is that always an issue with pouchers

Are you getting gas after eating all food? You may want to track that or keep a good diary. I normally don't get gas unless I consume a lot of dairy. But I think when my pouch was new I may have had a bit more gas. It's been 30 years so it's not so easy to remember. Anyway see if you can isolate particular gas triggers.

Finally, if you have really bad gas, Pepto Bismol is your friend and I would suggest keeping a bottle on standby. There is no need to tolerate it.

Urm certain foods are worse than others, eg if I have a lot of veggies.

I do take perpermint tea when I can which seems to help a bit, may try what you recommended also

Gald you are doing well.  My surgeon said I'd keep improving for a year or more,  which was true. 

Thanks! Good to know, how far out from takedown are you? How did things improve for you ? If I could manage the night without a toilet visit that would be perfect! Only had that about 3 times so far. But regardless very happy.

Couple years now.  Part of the process is you learn how what and when you eat impacts your schedule,  and you just start managing better.  Say eat vegetables at midday, less at supper.