Questions questions questions!

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 !

It's useful to distinguish a successful J-pouch from a not-so-successful one. Most are successful. Many J-pouchers sleep through the night, as I do, and have no urgency at all. 4-6 soft stools daily is typical. The best way to predict success is with a very skilled surgeon.

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!

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!

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!

And I eat absolutely anything I want-no restrictions at all, never have.

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.

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.

So I am 4 weeks out from Takedown!  I was one of those with severe pancolitis that came on very quickly and did not do well with meds. including Remicade infusions.  I had my first of 3 surgeries 7 mos. after being diagnosed.  My first surgery was the most difficult (I was not able to walk into the hospital due to a skin condition Erethyma Nodosum (sp), related to UC that only a small percentage of people get). Lucky me!  We gave my surgeon pictures that he could use with his students!  I have to say that as of now I make 4-5 trips to the bathroom in a 24 hour period.  No urgency and I have been out and about as of my second week home, eating out (mostly breakfast), shopping, and taking walks.  I have occasional loose stools, though mostly not.  I didn't mind either of my ileostomies, had zero skin issues, however, I am much happier with the j-pouch.  I am off low residue diet and introducing foods (especially fruit) back into my diet, so far no issues.  The best part about have an ileostomy is that it wouldn't bother me if I had to go back to it at a future date.  Good luck with your decision.  

@CTB23 thank you for your reply. Good luck with introducing new food. X

Katerina, I'm unsure where you're at but I assume you currently have an end ileostomy and are due to have the J pouch and loop ileostony created on the 21 Sept.

I suggest you aquire ilex Protectant Paste; you may not actually need it but it's better to have it and not need it, than need it and not have it.

ilex is a paste which can be applied around the Stoma of the loop ileostomy to protect or heal the skin should leakage occured.

The ilex can be applied to relieve the discomfort caused by butt burn; butt burn can also occur after takedown as a result of Bowel Movements (BM's).

During my time with the end ileostomy, I never experienced sore or damaged skin around my Stoma; never needed ilex; in fact, never heard of it.

With the Temp Loop ileostomy, I endured leakage around my Stoma, resulting in painful skin damage, luckily, this was relieved within 2/3 days by the ilex paste.

I only became aware of ilex and its healing properties after my skin damage had already occured but I continued to apply it around my Stoma, as a precaution, till takedown.

ilex paste can also be applied to relieve and prevent butt burn but since my takedown, I've never actually had the more traditional diaper rash butt burn.

The rash occurs due to bile acid contact on the skin, frequent BM's and cleansing.n

On occasions I do endure anal fissures, which a tiny cuts in the skin around the anus, kinda like paper cuts; but fear not, ilex paste can also be applied to treat them.

When ilex Paste has been applied, it's best to cleanse by way of wet wipes rather than toilet paper.

To prevent further skin damage or irritation, use pure, none scented wet wipes.

Thank you @Former Member. I'm at the very early stages and on the 21st I'm having my illeostomy. I joined this forum to get the whole picture and look into my options. Thank you for the advice x

It's probably not so important to aquire the ilex paste for the end ileostomy; I never needed it but I couldn't live without when I had my loop ileostomy.

ilex is available on NHS prescription.

I wish you luck.

strange posted:

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 the such an expression.

Just to clarify a bit, the loop ileostomy is upstream from the J-pouch, and doesn't need to get connected to the pouch. The loop is a bypass that (usually) lets the stool out before it can travel the rest of the way to the pouch. The pouch is already connected up at that stage, but generally has no stool to manage. "Takedown" refers to detaching ("taking down") the loop of bowel from the abdominal wall and closing up the hole in the bowel that had formed the stoma.

Earlier in the three-stage process many folks have an *end* ileostomy, and that does subsequently get connected to the rectal stump when the pouch is constructed.

Katerina,

I had a similar history to what you described. Diagnosed with UC at age 9 in 1972. Diagnosed with low grade dyplasia at age 29 in 1992. I had complete colectomy in 1992 and got the J Pouch.

Based on the 3 months I lived with the temporary ileostomy and the 24 years I have lived with an often problematic J pouch, I still am glad I decided to have a J pouch and would do it again if I could do it all over.

I say that despite being suspected of having Crohn's. I have treated chronic inflammation in and above the pouch with antibiotics and now Remicade for 20 years. The good news is that my inflammation has been treatable and my quality of life very very good compared to when I had UC. My continence is excellent and I don't have a zillion bowel movements. However I am taking a lot of medications and am doing so chronically. I have also had to change my diet, eliminating processed carbs and sugars. 

On the other hand I didn't like the ileostomy for many reasons beyond the cosmetic issues. I had skin issues and yeast infections due to very sensitive skin. My skin never seemed to adapt and the only way I finally got rid of the yeast infection that plagued me was takedown. I simply couldn't keep a seal and the area around the bag dry. It's yeast infection city when leakage happens, just like mold developing in the area of a leaky sink faucet or pipe that isn't washed and scrubbed or repaired and the area kept dry.

In addition I never psychologically adjusted to the odd sensation of stool coming out of the stoma rather than my rectum and anus. It's not natural. The Ostomy nurses all told me it takes a full year to adjust. Well I didn't have a year and my skin never adjusted. I gotta keep my J Pouch or I am dead meat.  

Good luck Katerina.

Just like to add there might be leakage issues when you first get your ileostomy as the stoma will begin to shrink in size.  I use a moldable wafer, which is simply the part that goes over the stoma, and because it is moldable you can open it up and it will simply mold itself to the size of your stoma with a snug fit and not damage the stoma.  There are also wafers that you can cut to the exact size of your stoma and this requires that you measure the stoma.  I'm sure that your nurse will explain all of this to you.

Also, there have been many advancements in the products available to those with ileostomies in the last 20 years.  I've had mine the last couple years and never had any kind of yeast infection, or any skin irritation that I couldn't simply treat with some powder and skin protective.  If you do get a leak it will feel as if the skin around the stoma feels warm, itchy (like really itchy), or stinging feeling.  If you feel any of that you should get ready to change the bag.  You will have a window time of about 30 to 40 minutes 2 hours after your last meal when the stoma is less active.  What I do is take half a tablet of imodium and wait 30 minutes for things to slow down.

There is also an adhesive removal spray, specifically for taking off the bag.  I use it so that I don't have to pull off the dressing.  It helps protect the skin, otherwise its kind of like giving yourself a wax every time you change it, although I've never given myself a wax, lol.  That was something my nurse told me anyway.

Whatever you decide there will be a period of adjustment.  You have to be ready for that.  And you need to look at it as a new chapter in your life.  And I know you mentioned that you don't feel sick now but you need to think of how lucky you are that they are able to detect this issue early.  This time in history that we live in is pretty remarkable when you think about all the medical advancements and ability to extent our lives.  We are living on borrowed time.  Live everyday to the fullest.  And enjoy this time before your surgery.  Go travel with family and friends if you can.

This is a good place to share your thoughts and get some support but if you do feel down in the dumps, don't be hesitant to ask your doctor to speak with a professional.  It took me many years of denial and thinking I would be able to get back to where I was before I went and talked with someone.  And I'm not on medication, I simply go every other month to talk with someone who offers some professional advice and it has helped me a lot to simply adjust and be honest about my situation.

I've only had my pouch for half a year so it's still early days but at the moment I go 5-6 times every 24h (only once during the night), I don't take any drugs, I can eat anything I want, I have almost zero butt burn, I have not had a single leak and I have no issues at all with "urgency" i.e. running to the loo. You will be left with large scars from the operations so even with a pouch, your stomach will not be super-model flawless any more but it's not so bad, they are fading.

The bag was fine - but the Pouch is definitely better!

My advice on whether to have a pouch or not boils down to basically one consideration - how are your sphincter muscles? If they are good, try the pouch. However if you know they are "problematic" then personally I wouldn't want to live with the constant stress/worry of leakage/accidents during the day (but most especially at night when sleeping) and I'd stick with the bag. But that's just how I feel.

I see you're in England. I had my op at Swansea and the surgeon there was excellent. If you are not 100% happy with your own surgeon I would definitely recommend transferring there - but you'd probably have to wait or pay to go private :-(

If it is done laprascopically, there is minimal scarring.  Just a very small bullet size at the stoma site, along with maybe another 1/4 inch as well, and I have another where a drain was taken out.  My scars from my hysterectomy are much worse.  However, I am almost 62, so not worried about that so much!  LOL!   

GB2014 posted:

I've only had my pouch for half a year so it's still early days but at the moment I go 5-6 times every 24h (only once during the night), I don't take any drugs, I can eat anything I want, I have almost zero butt burn, I have not had a single leak and I have no issues at all with "urgency" i.e. running to the loo. You will be left with large scars from the operations so even with a pouch, your stomach will not be super-model flawless any more but it's not so bad, they are fading.

 

The bag was fine - but the Pouch is definitely better!

 

My advice on whether to have a pouch or not boils down to basically one consideration - how are your sphincter muscles? If they are good, try the pouch. However if you know they are "problematic" then personally I wouldn't want to live with the constant stress/worry of leakage/accidents during the day (but most especially at night when sleeping) and I'd stick with the bag. But that's just how I feel.

 

I see you're in England. I had my op at Swansea and the surgeon there was excellent. If you are not 100% happy with your own surgeon I would definitely recommend transferring there - but you'd probably have to wait or pay to go private :-(

To be honest since my UC has been under control I'm lucky if I open my bowels once a week, as far as I know my sphincter muscles are fine! I've researched my surgeon online and he seems to be the best in the field and specialises in colorectal surgery along side UC and crohns. I can deal with going to the toilet often as long as it's not like I used to be, I was scared to leave the house and if I did I needed to locate every single toilet before I could relax! Xx

CTB23 posted:

If it is done laprascopically, there is minimal scarring.  Just a very small bullet size at the stoma site, along with maybe another 1/4 inch as well, and I have another where a drain was taken out.  My scars from my hysterectomy are much worse.  However, I am almost 62, so not worried about that so much!  LOL!   

Hi. Thanks for your reply. My surgery is going to laparoscopic as long as there are no complications x 

Hello all. 

When going into getting a pouch as from my experience you must be dedicated from the start to keep track of everything.  Food.  Problems. Everything. 

I was not.  You are doing the right thing by getting yourself well informed on the subject and what to expect. 

Me.  I didn't  I skimmed information.  Thought everything will just work out.  It didn't.  But that ok. 

As for the surgeon.  I had a very experienced surgeon.  Even a good.  Great surgeon cannot make a pouch work that just won't work as mine did. I went into it with at least knowing that. 

Your well informed.  Young.  You will be ok.  

I wish you the best.  And anyone going through this.  It's not easy.  Don't think it will be at the beginning.  But your young.  And just because of that I think you will do good.  Me.  I think I was too old to go through all that.  I should have just went straight to the ileo at my age but we all think of that being the worst.  It's not.  But at being 29 I would pouch it first.  Jeez.  I was healthier at 29. 

Again.  We are all thinking of you. 

Keep us updated of your progress. 

You'll be ok. 

Richard. 

I would just like to thank you all so much for the advice and sharing your experiences. I will let you all know how it all goes as soon as I feel upto it. I am having my laparoscopic illeoanal pouch and proctectomy on the 21st September xx

Katerina posted:

I can deal with going to the toilet often as long as it's not like I used to be, I was scared to leave the house and if I did I needed to locate every single toilet before I could relax!

I was the same and my pouch is nothing like that. I have firm control over it. No more urgent rushing to the loo. When I leave the house I don't even think about it any more

I had no idea that colon removal could be done laparscopically. I guess I was too much of an emergency at that point and so it was quicker to just slit me open. My ileo scar from the takedown is 3 inches wide. I find Bio oil very effective in reducing the scarring. 

Good luck to you Katerina!  You'll be ready for the adjustment and struggles that are inherent in this type of surgery. I'm sure you'll do great, like so many, and if not, you can always revert to permanent IIleo. Come back and let us know how you're doing ask questions  here and to your team if you have any difficulty with your pouch.

ljz

Hi everyone. surgery was yesterday morning, by 6.30pm I was on the ward. All went to plan! I feel fine just an achy back! I had some toast yesterday too. I thought I wasn't allowed to eat for a few days but I'm allowed whatever I want! I still have my morphine button so a little drowsy! Thanks for all your support 

Katerina xx

Glad to hear you are doing well!

good luck Katerina, glad to read your recent post. I'm here in the UK too and had a 2 stage process j pouch in 2012. Anything you want to know, I've probably been there, so please feel free to ask/share! I think most people on here are based in the US.

Onwards and Upwards.

Congratulations! Sleep whenever you feel like it.  It takes awhile to get back to feeling awake all day!