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hi everyone, I am new to the site! It's so good to read everyone's posts and experiences. 

I have had UC for 13 years, been symptom free for 6 years (I'm 29). At a routine check dysplasia was found and I was advised to have surgery to remove my whole bowel and have an illeostomy bag. I need to decide wether I want to have a reversal or not too.

initial thoughts are, yes I do but there are so many things I want to know;

are the chances of getting pregnant the same as with a bag? 

Doc says you need to open your bowels 4x day and twice at night...does that mean when you need to go, you need to run to the loo?  

My operation is on the 21st sept, not long and I am getting more anxious!! 

Xx

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Hi Katerina,

My advice is go into this with your eyes and ears wide open. A pouch is not a given route to endless happiness. I've had mine for 3 years and it's no bargain. Yes, it's better than an ileostomy in many ways, particularly from a lifestyle/ relationship viewpoint if that is important to you but it comes with strings attached. It's NOT a colon and so your hopes of 4 visits to the loo per day and 2 at night are not unrealistic but as many who post on here will attest it could be 2 times a day and once at night or, as is my experience, 8-10 times a day and twice at night. Sometimes the need to go is strong, other times it isn't. Diet is very important but getting good advice on diet is, in my experience, very difficult. In the UK, where I am, you are told that you can eat what you like but when problems arise then the advice changes! No two people are the same. A pouch is, in my opinion , a life changing surgery that will have life long consequences. The option not to have a colectomy probably doesn't feature for you but you need to know what's heading your way..I'm not at all unhappy that I've had the surgery but sometimes, in my experience, surgeons and physicians tend to " sugar coat" the procedure and the outcome. Do .ots of research, ask lots of questions and get it straight in your head what is happening to you.. Good luck !

Is it low or high grade dysplasia?  If low, the research is conflicted on the need to do surgery.  If high, the research supports it.

As a new poucher (2 months since takedown), I am finding it a lot to get used to.  Some things were nice about the ileostomy.  I could pretty much eat what I wanted to as long as I was willing to empty my bag as much as would be required.  With the pouch, I'm much more careful about what I eat since I have to deal much more directly with the consequences of my eating choices. 

Please be aware that when the pouch is new, you will need to void more than 6x per day.

I had my jpouch when I was 20 years old.  There were a few months where I had an ileo ostomy between surgeries and I was able to regain some weight and started to feel healthy again.  The ostomy was difficult at first to get used to but after a while, I came to the realization that it saved my life.  I was excited to have the j-pouch done at that point.  But after having the pouch done and final operation was over I began to have problems from the beginning and been dealing with issues ever since.  There are many that do have the surgery and  have real good results with the j-pouch but the most common issue is pouchitis or an inflammation of the pouch that is similar to UC.  It is treated with antibiotics and there are some that don't get it at all but for about 30% to 40% it becomes a chronic issue.  Some statistics say 20% to 15%.  I think 30% is about right though.  There are also other issues and complications that can occur, and I'm sure you can find on this site simply by scrolling through the posts.  

After 16years I have to decide whether or not to have my pouch removed, which is another major surgery.  20/20 vision, I wish I chose the ostomy but I was afraid.    The body image issue played a major role in me choosing the j-pouch over the ostomy.  Given there are issues with an ostomy as well.  But only after suffering for so many years did I realize the small intestine was never meant to be a reservoir or function as a mini colon.  At least mine wasn't.  Some are able to adapt to the transformation but for those that do I think they are a lucky bunch.  Also, their surgeons most likely where top notch, best at what they do.  It matters a great deal who your surgeon is and his/her experience.  

Its a major life decision.

I hope you choose what is best for you.  

Best of luck!

Last edited by JoelSmith

I always like to say that the majority of pouchers dont have issues, so you wont find them on the forums. That said, I am so glad I have my pouch. My first one failed after 7 years (due to a bad surgeon) and the new one is great. I would say do your research on colorectal surgeons and find one that works well with you.

For the first 6 months, be patient with things. I almost permanently reversed to an ostomy due to my frustration at first. But after that it starts to get better and I'm 2 years out from my last J-Pouch and sleeping through most nights. 4-6x a day. Its not perfect but it works.

Thank you all so much.  I have a lot to think about and appreciate everyone has a different experience. If I'm honest it's the appearance thing with an illeostomy that puts me off, and with a pouch it's the toileting that puts me off! Plus I don't know the effects on pregnancy and fertility with the pouch! Lots of questions to ask at my pre op! Thank you all xx

quakergarden posted:

Is it low or high grade dysplasia?  If low, the research is conflicted on the need to do surgery.  If high, the research supports it.

As a new poucher (2 months since takedown), I am finding it a lot to get used to.  Some things were nice about the ileostomy.  I could pretty much eat what I wanted to as long as I was willing to empty my bag as much as would be required.  With the pouch, I'm much more careful about what I eat since I have to deal much more directly with the consequences of my eating choices. 

Please be aware that when the pouch is new, you will need to void more than 6x per day.

It was low grade dysplasia they found in my rectum, they then removed the cells. Then on a follow up colonoscopy they looked around more and found some more, so they said I need to have the op! The whole bowel will be removed x

Katerina posted:

Thank you all so much.  I have a lot to think about and appreciate everyone has a different experience. If I'm honest it's the appearance thing with an illeostomy that puts me off, and with a pouch it's the toileting that puts me off! Plus I don't know the effects on pregnancy and fertility with the pouch! Lots of questions to ask at my pre op! Thank you all xx

I wear an appliance and you or no one else can tell.  And I wear tight clothing and am skinny.  Now it took a few months of seeing it on my body.  But now about 10 months later it's just part of me.  You get used to it. 

Richard. 

My husband has had his j-pouch for 22 years.  He was sicker on the meds (and of course, the UC). It was a 2 part operation --while he healed he had the bag.  He adapted well to it and if he didn't get the pouch he'd be happy with the bag, since he felt 80% better than being on the meds and UC. Of course, he has had some issues (blockages, pouchitis etc), but he is so much healthier.  Research it all and good luck.  You will find great advise here and the people are fantastic. Good luck! :-()

Get the pouch! Most who get it love it! Got mine at 19-adjusted quickly. Ate anything I wanted from the get go. Drank alcohol and generally took terrible care of myself as young people are prone to do I almost never went to the bathroom at night and just did double duty when I went to the loo. Had occasional pouchitis that would clear in a week or 2 with antibiotics or enemas. I ran into other issues later, with incontinence following bad surgery on a fistula, so learned other ways to manage. Many years later I now have chronic pouchitis and am taking IBD Meds that weren't around 30 years ago. Despite all that, I still prefer my pouch over ostomy.

I hated the ostomy-body image, leaks, skin breakdown, carrying supplies, etc.

Why not get the pouch built and get an ostomy. If you love the ostomy you don't  have to hook up the pouch. If you hook up the pouch and it is problematic (low odds on this-high odds it will be a success and you will love it) you can go back to the bag.

I think some may recommend getting pregnant before hooking up the pouch, but many just proceed to pouch and do pregnancy/fertility stuff after.

Just remember that most of us on on this board because we have "issues" of some kind, so this is a skewed sample. Heck-I have issues and I'd still go for the pouch again and aim to keep it-problems and all-as long as possible.

 

JJA posted:

Get the pouch! Most who get it love it! Got mine at 19-adjusted quickly. Ate anything I wanted from the get go. Drank alcohol and generally took terrible care of myself as young people are prone to do I almost never went to the bathroom at night and just did double duty when I went to the loo. Had occasional pouchitis that would clear in a week or 2 with antibiotics or enemas. I ran into other issues later, with incontinence following bad surgery on a fistula, so learned other ways to manage. Many years later I now have chronic pouchitis and am taking IBD Meds that weren't around 30 years ago. Despite all that, I still prefer my pouch over ostomy.

I hated the ostomy-body image, leaks, skin breakdown, carrying supplies, etc.

Why not get the pouch built and get an ostomy. If you love the ostomy you don't  have to hook up the pouch. If you hook up the pouch and it is problematic (low odds on this-high odds it will be a success and you will love it) you can go back to the bag.

I think some may recommend getting pregnant before hooking up the pouch, but many just proceed to pouch and do pregnancy/fertility stuff after.

Just remember that most of us on on this board because we have "issues" of some kind, so this is a skewed sample. Heck-I have issues and I'd still go for the pouch again and aim to keep it-problems and all-as long as possible.

 

@JJA thanks so much for your reply. You haven't definitely given me more hope in regards to the pouch. I have a lot to think about but first I will have my illeostomy and see if that all goes to plan and a pouch is an option!! X

I think it's also important to understand that this site is mainly all j-pouchers.  People that chose the pouch over the bag and therefore are anti-bag.  It would be a good idea to google other forums of people who have an ileostomy and what their stories are.  You should get an unbiased view of all the pros and cons.  How much of your life are you willing to dedicate to retraining yourself to use your bowels (8 to 10xs a day in the beginning and later 4 to 6 times)?  Go through 3 surgeries?  2 of which are major and with 4 to 8 week recovery?  Also, how skilled is your surgeon?  How many of these operations has he/she done?  Patients should not only ask what the success rate is of having a j-pouch but what the success rate is of those having had the surgery by that surgeon.  It matters a lot.  

I can honestly say that I hated the thought of an ileostomy when I was 20 years old.  I couldn't imagine myself with a bag on the side of my stomach and when I got it in the first stage I did not like it one bit, but what I did like was that I was finally starting to feel better.  There was finally some normalcy back in my life.  And I figured that the j-pouch would be the same.  But again the thing I did not know or realize at the time was that the small intestine was never meant to be a reservoir.  By design it is meant to expel waste.  And when you have scar tissue, which all of us have from the construction of the pouch, you develop strictures and narrowing of the GI, which makes it more difficult to empty the pouch, bacteria begins to build and inflammation can result.  That is what is believed to be the cause of pouchitis.

I have suffered for the past 16 years trying to understand why I continuously became sick, anemic, on medication, bottles of antibiotics... I think when we have UC we would take just about any other scenario other than that pain.  And when you are sick for such a long time your body learns to adjust and the pain of things like pouchitis and other complications seem manageable.  

But I realized I don't have to continue on suffering because of some body image that I want to uphold.  At least for me that was the reason why I chose the pouch.  I was scared of the not having the body I recognized looking back at me in the mirror.  And what my friends might say.  How it would effect my relationships, etc.  I was scared.  That's why I choose the pouch.  

And I know now that if I had chosen the ileostomy my life would be completely different, in a positive way.  I would have had my health back in 4 to 8 weeks and it would have taken a few month to get used to it but I know that I would have.  When you feel healthy, body image becomes secondary.  And places like this helps with being able to share thoughts and fears and whatever kind of issues.

It would have been 1 surgery, and I would've been able to get back to my life.  

But don't listen to just me, and don't just listen to someone who says, "get the pouch!".  This is a life decision.  Research as much as you can about this.  The great thing is you have an incredible amount of information to make an educated decision on what is best for you.  

Again, best of luck!

 

Last edited by JoelSmith

Thanks Joel. I am on illeostomy forums and joined this forum just to get the whole picture and compare everyone's experiences of pouch and bag. There are so many things to consider, so many pros and cons of both. The hardest thing for me to get my head round is that I am not sick at the moment or in any pain/suffering. It's really hard to think that for 6 years I have hardly been on any meds, no loose stools, no running to the bathroom 10x day and my colitis to me feels like it disappeared. It feels like I don't need the op, I don't need it to stop any pain or to make my life easier, I got my life back once steroids got everything under control after are very hard 6 years at the age of 16.  It's a kick in the stomach to hear I need it now, but I totally understand that I'm practically facing bowel cancer if I don't get everything removed. It's just hard! I appreciate everything you say, and I feel like I'm not ready to watch what I eat again, or re train myself to run to the loos or spot where the toilets are everywhere I go. I'm just going to take one step at a time xx

Agree to research and get lots of opinions.

Just wanted to clarify that for most, whose pouch is working well, life with a pouch is not "running all over the place to find a toilet 10x/day" like a UC flare. The urgency is gone. My favorite memories right after reconnection were feeling like I needed to "go" but not going. I could get the urge and easily "hold it" for an hour.

Even now, with my sphincter issues, I often don't go #2 all day at work. I go in the morning, after work, in the evening, and before bed. Not at night.  I go to amusement parks, exercise classes, all day walking around Washington DC. I am no more on the hunt for a bathroom with a pouch than anyone with a bladder.

Good luck!

 

The best time to have this surgery is when you are feeling well!  Sounds like you are there!  The entire procedure is fascinating to me.....amazing, really........and you will be the new you when finished!  It is a journey and each of us experiences what may seem like the same itinerary somewhat differently!  I felt so good having the ileostomy that I kept it for a full year and had a difficult time giving it up.  My son convinced me to go ahead and do so because I could always ask for a reversal if I wasn't happy with a functioning J-pouch. That was 14 years ago!  I still have my J-pouch and it is just fine!  Best wishes for a positive outcome.

 Hello Katerina

This link will be of interested and will probably answer the vast majority of your concerns:

https://ihaveulcerativecolitis...ships-and-pregnancy/

 
I had my colon removed during 2005 on the proviso the ileostomy would be temporary, however it was then decided I was in fact suffering from Crohn's rather than UC, therefore, for roughly 9 years I had an end ileostomy/Stoma and had to use colostomy bags.

However, due to my persistence and after being flare up and drug free for nearly 9 years, I had my J pouch created during 2014, followed by my takedown in January 2015.

Due to the bullet hole type wound of the old Stoma site; it took 5 or 6 month to completely recover from takedown surgery, however, from day one my Bowel Movements have been an average of 3 to 4 per day: never less than two and very rarely more than 5.
I can go for hours and hours in between BM's, 5, 6, 7, 10, 11, 15 hours, although it does vary from day to day; only yesterday, I had a total of 3 BM's all day and from 8am upon till 11pm, I did not have open my bowels at all. 

I very rarely have to awake from my sleep to use the toilet, if I do it's because I've arrived home at 2 or 3am and ate before I go to bed. There's never any accidents during my sleep, never any urgency either, in fact I don't even think about Bowel Movements until I need to use the toilet or when I'm writing about it on this forum.

I also eat what I want when I want; even when I was being treated for UC all those years ago and, during the 9 years with the ileostomy, what I ate made no difference.

Last edited by Former Member
strange posted:

 Hello Katerina

This link will be of interested and will probably answer the vast majority of your concerns:

https://ihaveulcerativecolitis...ships-and-pregnancy/

 
I had my colon removed during 2005 on the proviso the ileostomy would be temporary, however it was then decided I was in fact suffering from Crohn's rather than UC, therefore, for roughly 9 years I had an end ileostomy/Stoma and had to use colostomy bags.

However, due to my persistence and after being flare up and drug free for nearly 9 years, I had my J pouch created during 2014, followed by my takedown in January 2015.

Due to the bullet hole type wound of the old Stoma site; it took 5 or 6 month to completely recover from takedown surgery, however, from day one my Bowel Movements have been an average of 3 to 4 per day: never less than two and very rarely more than 5.
I can go for hours and hours in between BM's, 5, 6, 7, 10, 11, 15 hours, although it does vary from day to day; only yesterday, I had a total of 3 BM's all day and from 8am upon till 11pm, I did not have open my bowels at all. 

I very rarely have to awake from my sleep to use the toilet, if I do it's because I've arrived home at 2 or 3am and ate before I go to bed. There's never any accidents during my sleep, never any urgency either, in fact I don't even think about Bowel Movements until I need to use the toilet or when I'm writing about it on this forum.

I also eat what I want when I want; even when I was being treated for UC all those years ago and, during the 9 years with the ileostomy, what I ate made no difference.

Thanks so much. The link was just what I needed. Your experience also sounds encouraging. What is a takedown? Xx

I'm sorry; takedown means: connecting the temp loop ileostomy of the small intestine to the newly created J pouch and doing away with the Stoma and no longer requiring the use of colostomy bags,

Takedown is a term I picked up via this forum, otherwise, like yourself, prior to using this forum I'd never heard of such an expression.

Last edited by Former Member

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