I think you will find plenty of posts on this site similar to yours.  You'd really want a confident diagnosis that it is uc rather than crohns, and if it is you then have a decision to make.  Personally i didn't like having an ostomy bag at all, so i went for the jpouch and it's working out fairly well (I'm about 2 months post op).  5 times a day is fairly common, there no urgency, but i get the feeling i need to go to the toilet a lot, on average 2 or 3 times an hour  I can just squeeze and defer, but it is annoying, especially at night. 

Could be that calms down with time, it could improve if i started taking immodium but i want to try without first.  So things have gone good for me, not perfect but early days.  I would choose this over the ostomy bag every time of I'm honest.

i should add my diet is completely normal, nothing in the avoid list at all, although i won't eat anything really spicy as it burns like heck on the way out.

I can only give you my experience so far with j-pouch.  I had mine completed with 3 steps, first total colectomy, second removal of most of rectum, rectal cuff and j-pouch formed, then takedown.  I had all three surgeries starting Nov. 2015 and ending Aug. 2016.  So far, it has been fine and I am only in the bathroom 3-4 times in 24 hours.  Also, the urgency to run to the bathroom is not there, as with UC.  I am eating mostly what I ate prior to surgeries, just careful with caffeine, salads and raw fruits and vegetables (eating in small amounts). Also chewing everything really well.  I make sure that I am well hydrated all the time. I had 2 types of ileostomies an end for 7 mos. and a loop for 8 weeks.  I did not find either of them difficult to deal with.  I was hiking in the White Mountains of New Hampshire about 6 mos. after my first surgery.  I had my surgeries also when I was able to plan for it and have a choice of who I wanted for a surgeon.  I am planning on returning to hike again in May, just may have to make some adjustments.  If things do not continue to work out as well as they have, I also now know that I could live with a bag and function well.  It's all what works for you.  I  opted for the j-pouch and never looked back.

Keep what you have.  If your happy and can live with it.  Stay put.  I wrote a long story but deleted it.  I have an end ileo after my pouch.  I'm happy.  My pouch was pure misery.  I wanted to try the pouch too.  Big two plus year mistake. 

Richard. 

My  husband had mild UC for 20 years.  They found high grade dysplasia, so no choice but to take the colon out.  He has a jpouch for over 11 years and doing well.  Goes 5-6x per day and 1x per night. No urgency. Eats whatever he wants. 

My son had a fast and furious 3 months of UC, no meds worked.  He had 3 step surgery over the course of 6 months.  He is now 6 months post takedown and doing well.  Goes 4x per day and 1x per night.  No urgency. Eats whatever he wants.

Both of them HATED the ostomy.

I have indeterminate UC, I hated the bag; after years of receiving treatment and medication for UC, once my Colon was removed I was told I more than likely had Crohns and I accepted my fate; although my initial diagnosis was made by an eminent Surgeon, he wasn't actually a specialist in the relavent field.

After a number of years of being drug and treatment free, it was decided I "more than likely"  have UC after all.

I hated having to use a colostomy bag, I especially hated its appearance.

Now I have a functioning J pouch and every time I think of the surgery thats been performed to create it, it feels like a miracle.

It feels fabulous to be able to look at myself in a mirror and not see the horrible plastic bag hanging from my stomach........... Top of the world, Ma !

Within days of my takedown, my BMs were maybe 5 to 6 times per day and by time I left hospital, maybe 3 to 4, sometimes 5, but it varies so much

Within 2/3 months since leaving Hospital, my BMs remained pretty much the same and I rarely experience night time BMs, there's never any leakage or accidents during my sleep and never any urgency.

I've not experienced the diaper rash type butt burn that I was warned to expect.

I eat absolutely anything, always have, there is no foods which I avoid; what I eat has never been a cause for a UC flare up and has never caused any issues with my J pouch.

Currently, my BMs could be only 2 per day, other days maybe 5; it's never less than 2 and rarely more than 6, on average, it's maybe 3 to 4 per day, I don't actually notice my own toilet habits, unless I've had an accident and I'm forced to think about it.

Opting for the J pouch is the best decision I've ever made, although, like yourself, I had my reservations and I hated the use and appearance of a colostomy bag more than the fear of surgery and the possible complications.

If you don't try a J pouch for yourself, you will never know whether you truely made the right decision.

Getting a J-pouch enabled me to do things that would have been pretty difficult with an ostomy bag (once getting rid of that colon made me feel well enough to do things). I took up scuba diving, as well as martial arts, though I had no idea before the surgery that either one was in my future. 

This paragraph is the problem.  It makes people with a bag feel alienated. 

"It also feels fabulous to be able to look at myself in a mirror and not see the horrible plastic bag stuck to my abdomen and drooping down............ "

It's not a horrible plastic bag.  I don't think it is.  It gave me the control of my body back again.  It's thinking like this on this board that's wrong.  After all it is an ostomy forum also.  And people with permanent end ileo's do read this.  It may be how you feel but it passes the wrong thoughts to people facing this.  

I read similar posts prior to mine and dreaded the thought of having to get it.  And even after I got it.  Puts you into the dumps.  Depression.  

Sorry but we have to put it in a positive light if it's what we end up with.  And some of us do.  It's not that bad.  In fact it's not bad at all!  We have to get past thinking it's a horrible bag.  After all.  You may have to go back to it.  You never know.  It's a horrible disease.  Yes. 

Richard. 

No one with a surgical option to the plumbing they were born with should feel offended by a description written by another poster.  It is the way that poster looks at it for themself and is likely felt by others under similar circumstances. If you read the entire post containing the “offensive” paragraph, you will see that it contains personal information, both “plus and minus” that would be helpful for someone faced with a similar surgical decision.

 A person faced with having one of these procedures is best served by researching the available options and making an informed decision that fits best to his/her lifestyle.  This research includes reading what others write or say about the option they chose, including statements of complications they have had and their personal feelings about the physical aspects of their procedure, such as having an external bag.

It wasn't my intention to offend or to alienate anyone, however, I don't see why I should have to hide my true feelings and pretend my colostomy bag looked wonderful when it didn't........ I absolutely hated it.

I hope I never ever have to have the use of a colostomy bag ever again.

If I'm forced to choose between a better quality of life with a colostomy bag than with a J pouch, then I'll have no choice but to accept my fate and get on with it.

After all, I had to use a colostomy bag for years prior to the creation of my J pouch and there was never a day when I relished the thought of having the colostomy bag stuck to my side, even though the surgery that enabled its use saved my life.

Finding this forum prior to the creation of my j pouch, reading stories, other members experiences and replies to my post is what helped me make the decision to go for J pouch surgery........ the best decision I've ever made.

Some great, honest replies. I really do appreciate it. When checking my email this morning it was flooded with responses  

Going to the toilet 3-4 times a day sounds like a dream, I go more than double that during the night alone.

As someone mentioned, don't decide until you know it's UC which is exactly what Ill be  doing. My colon will be sent off for a biopsy. Both horrible illnesses but it seems UC has more options available but what ever the outcome, I'm sure ill make do and carry on.

Thank you everyone for your comments

Ben

During the day I would have to change the bag roughly every two hours, sometimes 3 and any longer and the bag would replicate an inflated airbag, it was so uncomfortable, due to fear of it bursting, which occured often, especialy during my sleep.

My sleep was disturbed too; either due to waking up to change the bag or because the bag had burst, there was always the apprehension of knowing the bag was slowing filling during my sleep and I must not lay on top of the bag or lay on my side.

Whatever your decision, best of luck!  Just remember you are the only one who can decide what's best for you and your lifestyle.  We can only give our own perspectives, both positive and negative.

Hello, BenB.

Like most patients waiting for their J pouch to heal inside, I had the use of an ostomy bag for three months, then had my reversal. I had almost opted for a permanent ostomy because my surgeon felt that based on where my cancer was I might not be a candidate for a J pouch. In the end, my surgeon did manage to create a J pouch but the understanding as I went under anesthesia was I would not know which one I had until I woke up.

I experienced lots of leaks from the side of the bag where I have a permanent slight dip in my stomach, and it was very expensive to buy the bags and all the supplies (sprays, wipes, concave flanges wafers, etc) that go with it because my stoma was retracted (thank heavens for insurance). During those weeks I dreamt and wished for a proper stoma that stuck out 3/4 of an inch so I wouldn't have excoriated, bleeding skin and cry from the pain. In the last two weeks, I finally got the hang of it and never leaked again, and learned to change the entire appliance in five minutes. I came to appreciate my ostomy because it saved my life by allowing my insides to heal so my J pouch could work properly. When I had my reversal / takedown, I looked forward to being bag free but I also was extremely grateful to my little retracted stoma and the bags. I thought it was a miracle of science and surgical skill that my life would be saved from cancer using a small plastic bag, a stoma and my small intestines. While I would not miss the feeling of a full bag against my stomach, or the fear of it leaking while I was out of the house, I did not mind it and did not hate it. It didn't look pretty in the mirror, but if I had to have it permanently I would have got used to it. You can get used to anything. The look of the bag and how others saw me was not important when it comes to a life lived as fully as you make up your mind it will be. If it was a choice of living with an ostomy bag or UC or cancer or death, the choice is simple. People with UC have a very high risk of colon cancer, and if it leaves your colon and goes to the liver or brain, it is a different battle.

An ostomy bag or a J pouch both work well; it is what you are willing to do, or change slightly in your life, to make room for each option. Ostomy bags can leak or fall off, and J pouch can develop pouchitis and you might have more than six BMs a day. Both options will save your life, and if you have a family it will save your family-life too. If you opt for a permanent ostomy, make certain you tell your surgeon to pull the stoma long enough so that it sits above your skin with less chance it will retract and the output comes in contact with your skin creating real problems. Even if he has to place a temporary bar under the stoma to keep it up and out.

Listen to your head and your surgeon, your lifestyle, your ability, your determination, and whatever choice you make will be your own and the right one. I hope for the best for you. Happy holidays.

BillV posted:

No one with a surgical option to the plumbing they were born with should feel offended by a description written by another poster.  It is the way that poster looks at it for themself and is likely felt by others under similar circumstances. If you read the entire post containing the “offensive” paragraph, you will see that it contains personal information, both “plus and minus” that would be helpful for someone faced with a similar surgical decision.

 A person faced with having one of these procedures is best served by researching the available options and making an informed decision that fits best to his/her lifestyle.  This research includes reading what others write or say about the option they chose, including statements of complications they have had and their personal feelings about the physical aspects of their procedure, such as having an external bag.

Strange.

I wasn't offended.   It just makes the option seem so bad.  I thought that way.  Now that I have one permanently I want people facing it to have a positive outlook on it.  It's not the end and it's as easy to adjust to as any other form.  Sometimes the easiest.  To me it was.   I want people to know that.  It's not a disgusting bag.   Something ugly.  My wife thinks it's a beautiful gift.  Yes.  She does.  She sees me again.  The person she married way back. Not a disease.  Because my life was ruled by the disease.   A bag has taken that disease and put it aside.  I will always have the disease.  But I have control of my body with the bag.  No drugs.  No pain.  No anything  added.  

They all have problems.  Bag.  Pouch.  Bcir. K-pouch.   We all live with it.  But the bag gets the worst reputation.  Because you can see it.  And that's what everyone wants to avoid.   Even though you couldn't see my pouch it gave me the worst two plus years of my life.   I don't say horrible pouch.  The bag has a stigma with it.  No matter what you say people shouldn't keep it going in these forums.  For the sake of the people that have them and people that will get them.  It's not ugly.  If you have to have one your gonna have to face it and come on terms.  You won't have a choice.  I have come to terms with it.  I can do anything anyone with a colon can.  Healthy colon.  I couldn't even do that with my pouch.  But I can now.  

I'm not offended.  But those of us with Temps should not possibly offend someone with a permanent or make them feel ugly.  That's what I am getting at.  Of all places it shouldn't  be said here.  My opinion and mine only. 

Richard. 

When I wore the ostomy bag, and even now when I have to tell people (pharmacist, lawyer, physiotherapist) that I don't have a colon, I can tell they are working it out in their head how do I go to the bathroom, then they assume I am wearing a bag on my hip because they've heard somewhere about bags. They even feel a bit sorry for me. Not pity, just sorry for me, and I can see it. They have never heard of a J pouch. When I explain what a J pouch is, how it's created, how it works, I have one, and I'm able to use the bathroom sitting down, they almost always have a gut reaction that says, oh! lucky for that! And I tell them, as simply as possible, that a bag on your hip is not a bad, unacceptable thing, that a lot of people live with one, it's not awful, it's not the end of the world, and it saves lives. Whoever first thought of an ileostomy in the 18th century (although it was a crude sponge tied to the patient's waist.....) was a miracle worker. Sure, a bag can be uncomfortable when it's full. It's not always pretty, but there are pretty ostomy bag covers (or solid colours) available on Etsy or specialty shops so you don't have to see the plastic material. Google it. I try to share with anyone who doesn't know, or is appalled at the idea of a bag, that it isn't horrible. I don't want people who don't know about ostomy bags or J pouches or K pouches to think it's horrible. That perpetuates the bad image.

Thank you. 

The bag was fine - but the pouch is better and I'm glad I decided to try it.

I decided to go for it because my surgeon was very experienced, highly recomended and his hospital is the regional "centre of excellence" for gastreoentrology.

Another reason is that apart from the UC I'm in good health so no complications after surgery. I don't have any other medical issues that might affect the pouch or my digestion. I personally would not have chosen to have the pouch if I knew I had a problem with my sphincter muscles for example.

I've only had my pouch for 10 months now but it's great, no urgency or leaks, very minimal butt-burn and emptying 4/5 times every 24h. In the long-term I can imagine problems cropping up but oh well, I'll deal with them when they happen.

Good luck!

Oh my.....BenB, I applaud your surgeon for presenting the ostomy as a viable option. It is certainly a lot easier PHYSICALLY to stop at that surgery than it is to create a jpouch and then surgically remove it. Only you can answer those questions at that time - "Has my body been through enough? Am I ok with this bag? Do I hate it?" Don't let ANYone answer them for you. And they have to be the questions that are relevant to you. We all have our own unique responses. You'll have yours.

Just to add, with no malintent, I don't have that negative visceral reaction when I see my bag in the mirror. I wear a pretty bag cover and go on my merry way. But then that was the number one thing on my "pro" list when I was considering pouch removal: "I can live with the bag." If I couldn't, things would be different.

Life with the bag was great, but I was keen to try for a j-pouch. I've had mine for about 4 months now and love it.

Reasons I wanted to try:

- I'm still relatively young (mid-30s) and wanted to give myself a chance at a life free from stoma supplies, the daily bag changing routine, etc. I also wanted to give myself a chance at a more 'normal' lifestyle in general.

- I didn't like the feeling of my bag getting full (it was heavy when full, and ballooned a lot) and thought a full j-pouch would be more bearable than a full bag (in that it's internal, so even when it's really full, it doesn't show). Because I didn't like the feel of a full bag, I emptied mine a lot - probably 10x a day. I wanted to try a j-pouch as many j-pouchers empty a lot less than that.

- Less risk of hernias with a j-pouch than with a stoma (I like to lift weights, and have four kids which means a lot of lifting in general).

With the j-pouch:

- I empty it 4-5 times every 24 hours.

- I have total control and (apart from in week 1) don't have nighttime leakage issues.

- I haven't been troubled by 'butt burn' so far.

- I don't take any meds (no Imodium etc).

- I do take psyllium husk (a natural dietary supplement that has thickened up my stool a lot).

- I almost always sleep through the night.

- I have found that a full j-pouch (for me at least) feels more comfortable than a full bag did, for all the reasons I expected. Holding on for a couple of hours isn't a problem, and isn't particularly uncomfortable.

- I eat a totally normal diet (spicy food, coffee, alcohol). Thankfully my pouch seems to handle everything well enough.

Once I was into a good routine, my daily stoma bag change probably took me 10 mins every morning (with help from my wife to get the barrier ring on properly). That wasn't a major hassle, but morning routines are definitely less complicated with the j-pouch: I get up and use the bathroom like anyone would, and that's it.

I would say that with the j-pouch so far, I now regard myself as living a normal life. I no longer think about bathroom locations all the time (and compared to life with UC, that is a huge change for me!)

Always make me smile when people mention going to the toilet 4-5 times a day, sounds like a walk in the park to me which is where I would love to be.

Like yourself @Albannach I'm young, 23 to be exact. When I'm not completely shattered and my stomach feels "normal" I try to train daily. I try to keep healthy both mentally and physically.

What you and the others have said makes it sound like a dream but I understand there are two sides to the coin. My biggest fear is that it doesn't work, then I'm stuck with it for a few years.

@Lambiepie I actually told the surgeon that's what I wanted. I went into the meeting prepared, explained my situation and said that's what I wanted. To my surprise he felt the same way, which was a relief, thought I was going to have to fight for it 

Bag or Pouch, both sound better than my current situation and I'm sure ill be fine with either 

Thanks for replying

Hi BenB,

I will say that I do take Immodium before bed, Benefiber with breakfast and Pepto-bismol at dinner, some night time leakage, but has gotten much better.  Unlike you, I was diagnosed much later, at 60 years old, with UC and it came on fast and furious (severe pancolitis with dysphasia). 7 months later, I started with my first surgery for the j-pouch.  Even with these meds. I am happy with my j-pouch.  You just get used to it all.

I've had my j pouch for 6 years now. It's worked out great for me. For me the decision was pretty easy because I have two family members with long time j pouches so I got to see how well they have done with theirs all these years.  

I use the bathroom 4-6x a day, no urgency and eat pretty much everything. So far (knock wood) no pouchits. I did NOT have a good time with my temporary ileostomy. I had a lot of skin issues and it was just hard. I'm very happy I don't have to deal with that. The j pouch was the right decision for me. 

Good luck! 

Not everyone gets an ideal outcome from their j-pouch surgery (and my surgeon was very direct about the potential risks), but statistically a high number of people are happy with their outcome even if it's not 'perfect'.

I have two friends with j-pouches. Both have had some issues with pouchitis, but have responded well to antibiotics. I think both go 6-8 times a day, one sleeps through the night, the other gets up once a night. Both are really happy with their pouches, and are glad they had the surgery. One tolerated his ileostomy but was pretty happy to lose it. The other loved having an ileostomy, but is also glad she opted for a j-pouch.

I'm glad you keep in a positive mental state. That makes a huge difference in facing this kind of surgery.

I spent all day in a work meeting - in one room with a group of colleagues from 10.30am - 5pm. I used the bathroom once during the lunch break, and apart from that I honestly didn't even think about it. That is an outcome I am delighted with - what a total turnaround from my UC days.

Albannach posted:

Not everyone gets an ideal outcome from their j-pouch surgery (and my surgeon was very direct about the potential risks), but statistically a high number of people are happy with their outcome even if it's not 'perfect'.

I have two friends with j-pouches. Both have had some issues with pouchitis, but have responded well to antibiotics. I think both go 6-8 times a day, one sleeps through the night, the other gets up once a night. Both are really happy with their pouches, and are glad they had the surgery. One tolerated his ileostomy but was pretty happy to lose it. The other loved having an ileostomy, but is also glad she opted for a j-pouch.

I'm glad you keep in a positive mental state. That makes a huge difference in facing this kind of surgery.

I spent all day in a work meeting - in one room with a group of colleagues from 10.30am - 5pm. I used the bathroom once during the lunch break, and apart from that I honestly didn't even think about it. That is an outcome I am delighted with - what a total turnaround from my UC days.

Yeah I completely understand, it's a case of "one shoe doesn't fit all". Will speak more with my surgeon about it after I have the ileostomy, he did speak about it briefly but because they are not sure if I'm 100% UC, he wants to wait until they take it out, send off for a biopsy and find out the result.

10:30 - 5. Better than most people without IBD  

The mechanics and nuisances of a J-pouch vs. an external ileostomy are pretty straightforward when they work well, which both usually do. Either can become miserable if they aren't working as intended, though J-pouches are more complex, with more ways to disappoint. The most fundamental difference for many is the appearance. Body image is enormously personal, and no one's body image applies to anyone else. If someone finds the appearance unimportant, that's appropriate sharing of their experience. If someone else finds it unpleasant or even monstrous, that's equally true for that person, and pretending it's better isn't, I think, the purpose here. Someone reporting that they can't bear the idea of an external ileostomy has essentially nothing to do with *your* ileostomy. The great news is that unlike unpredictable complications, most people have a pretty good sense of their own body image, and what's okay for them. If they ask, though, they're entitled to an honest perspective, IMO.

Well said Scott.  

You said what I couldn't come up with. 

I apologize if I offended anyone. 

It true.  It's all a personal choice if you have the choice.   Go for it.  I certainly did.  I would have regretted it have I not.  Probably always would have thought why didn't I at least try it.  

And either one can have many many problems.  

But when either one works.  It's wonderful.  

Richard. 

Living with Colitis before surgery was hell.  I was in and out the hospital too much.  I tried so many different medications and different diets.  I put in so much effort to get myself better but nothing seemed to work.

During my last flare up, I was taking about 20 pills a day that included multiple doses of Asacol, Predisone, Percosets, and some other drugs. I was also getting Remicade infusions for about 5 months.  

The Predisone gave me severe mood swings and I was diagnosed with Induced Steroid Psychosis.

I had enough of the pain, blood, and the meds that were literally driving me crazy. So, when my doctor offered the option of surgery, I took that option. 

I knew I would have great support from my family and I wouldn't be doing this alone. So I went for the J-Pouch surgery.

Now, five years later, I am very happy I had the surgery.

Without sidetracking BenB's thread, I do want to say that I understood where Richard was coming from with his original post. Truthfully, it was my gut (no pun intended) reaction, too. We hear things all the time - on The View, where apparently it was mentioned that it would be horrible to sit next to someone with a colostomy bag - and all the misconceptions about what life with a bag is like. We are constantly having to explain to people that, no, it's not like that. I practice a pretty challenging form of yoga, I'm on my belly, I'm having sex, I'm swimming, I dress well and, honestly, you'd be lucky to sit next to me on a plane because no smells come out of me. So please understand our initial reaction. Having said that, it's also true that everyone absolutely should post his or her true experience, no censoring, especially if it's requested of the original poster. We're here to rant, rave and help!

I also have a long story, but here's the short version.  I had colon cancer, needed to have my colon removed - and now I consider myself "perfectly healthy" with a J-pouch.

Now the longer:

I have had 3 different ileostomies and this will be my second (redo) j-pouch.  The thought that I maintained was that I was very lucky to even have an ileostomy as a way to "feel normal!"  I went through about 5 or 6 surgeries, two two-steps and others in between over five years.  My final decision to go back under the knife was when Dr. Remzi (formerly of Cleveland Clinic and now NYU) simply said, "I can fix you."  Prior surgeries left me with some internal small leaks, leading to abscesses, etc.

I used to come to the board very often for advice from the great people here that understand what problems I (and others!) go through.  But I come less, just to try to give my story, since my theory is that many people who have successful J-pouch surgeries simply don't spend time going back to the forum, except to offer input from time to time!  Of course we have our regular experts -- without whom those of us with these issues would have no real place to turn!  And thanks very, very much for the regulars!

I literally do not think I have a problem.   As a J-Poucher, yes, I go to the bathroom more than most, as little as four times a day, I think -- and I usually go "on command" before I go play basketball, or go shopping, etc.!   about 50% of the nighttime I have to go, but almost always attributed to late night eating -- ice-cream or sweets -- I'm bad!

Attitude can do absolute wonders.  If a person always feels like they got a raw deal, woe is me - you get the picture -- then it's easy to fall into depression and maybe even reliance on pain meds when you are just sore, etc.   Trust me, too many people become addicts from surgeries - and that's a great way to ruin your life -- I've seen it with LOST family members, sadly.  It's an important enough message to mention it at the risk of making readers uncomfortable.  Forgive me.

However, with an ileostomy or a happy JPouch, you have the rest of your life to enjoy!  Compared to colitis; having bloody stools, always racing to the bathroom (or trying to find one!) stopping at the side of the road, gut-wrenching cramps -- I would take an ileostomy ANY DAY!  

I would say, put a smile on and go get 'em.  Do what is necessary and calculated to get your life back.  It might take a while .. but take each step with a deep breath.  I am happy to know that if all else fails again for me at least I have an ileostomy alternative.  Do I want it?  Nope.  I love my Jpouch.  But I am happy we have options to being miserable and withering away. 

Best wishes!   Thank God for this forum and the wonderful group of people that helped me through 5 years of surgeries!

Merry Christmas/Happy Holidays!

Had a few more questions regarding the J-pouch.

1: What is this "buttburn" people speak off? Sounds like quite a pain in the ass (ba dum tss)

2: I was wondering if after surgery you're told to do any exercises, perhaps even before to help strengthen the backside muscles? I remember speaking to someone a few months ago and they mentioned it's like learning to use your bottom again until the muscles are strong and used to working again.

3: I know it varies from person to person but how long do you have to stay in hospital until they are able to release you?

@aka KNKLHEAD Can't argue with that. Some very knowledgeable and helpful members on here, glad I found the forum. You all have helped me a lot, it's great hearing from people who have actually had a stoma/J-pouch during their life, for better or worse.

Doctors/Surgeons are great but I think it's one of those things that unless you have experienced it yourself, you can really fully understand what it's like.

When friends/family ask are you worried, I mean I have concerns like any normal person but overall, I'm looking forward to it. I'm excited for the future

Merry Christmas to you all!

Butt burn refers to a couple of things, but the most common meaning is irritation of the skin near the anus from ileal output. The poop is irritating and the skin takes a while to adjust. In this simple case, a barrier cream like zinc oxide or Calmoseptine kept on the area at all times will prevent the irritation from causing much trouble. 

Kegels are very useful, many times daily, and best started well before surgery.

They'll keep you until you're eating and pooping reliably, with no signs of infection. That can vary a lot.

Lambiepie's post: here's a thought to those "ladies" of The View who said it would be horrible to sit next to someone with a colostomy bag and the women who sat by and said nothing or laughed at the witty remark, I think when they are older and might end up incontinent wearing a diaper, or might become ill and need an ostomy, they will think back to that show episode. I bet their poop doesn't stink. They probably have sat next to someone wearing a bag and never knew it because there was no odour or sign!

I had a jpouch created when they thought I had UC...turns out I have Crohns and now I'm looking to get it removed.  If it wasn't for the Crohns, it would be great.  I only had UC / Crohn's for a couple of years before it had to come out, so maybe with more time, I would have had a better idea about the Crohn's.

Also, it seems like there are a lot of surgeons willing to do the j-pouch surgery, but not many are quick to do a j-pouch excision.  

I had the same thoughts about the comments of those "ladies" of The View.

Hope you all had a great Christmas

I'm back with another question

This one is for the blokes regarding a catherer. The idea of something going up my penis worries me more than the actually operation. Is it done when you're awake or knocked out by the anesthetic? & if it's done when you're awake, does it hurt either going in or out? Gives me goose bumps just thinking about it 

Haha you'll wake up with the catheter in place. Pulling it out hurts so request an Iv injection of pain meds right before they do it and the. Push your pain pump button a few times before you try to piss after they've taken it out Bc it's gonna burn the first couple times. 

J moons posted:

Haha you'll wake up with the catheter in place. Pulling it out hurts so request an Iv injection of pain meds right before they do it and the. Push your pain pump button a few times before you try to piss after they've taken it out Bc it's gonna burn the first couple times. 

Great, so I got all that to look forward too 

It does hurt when they pull that catheter out. But trust me you want it out as soon as possible. It's not a cool feeling having it in place. So, once they take it out, you're like "Ah, finally, some freedom.  That's one less tube out of my body."