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Ileostomy vs J-Pouch. Help calm my fears.  

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IanCraft
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September 17, 2019 4:16 pm  

Hi all,

I am brand new to this forum, and I'm sure this topic has been dissected before, but several months ago after years of UC, I perfed in four spots. One fun-filled emergency surgery later, and two months in the hospital I am now happily living with the ileostomy. Comparing my health over my 24 years, this is far and above the best I have ever felt. I'm at a healthy weight, eating normally, working out, running and swimming. I am coming up on the date where I could choose to go ahead with J-Pouch surgery.

Now, after months of being excited to remove the bag from my side, I've read plenty on the side effects and quality of life. The J-pouch seems almost scary. The overwhelming majority seem to think it's 100% worth it to leave the ileostomy. As much as I would love to regain my daily thinking time on the toilet, I could really use some input from those who have made the decision already as I've truly started to worry. Any tips? Suggestions? 


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VeganOstomy
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September 17, 2019 5:18 pm  
Posted by: @iancraft

I've read plenty on the side effects and quality of life. The J-pouch seems almost scary. The overwhelming majority seem to think it's 100% worth it to leave the ileostomy.

Welcome to the forums, Ian.

I should point out that online medical discussion almost always sways towards negative experiences. There's a saying that everyone who's had a successful outcome is likely out enjoying life :-) 

Please don't let what you see online sway you from having the surgery, but i trust that your surgeon has answered any questions you've had.

Some people who have an ostomy do decide to keep it, despite having the opportunity to reverse the surgery and get a j-pouch.  There could be many reasons for this, but one common reason is that they are happy with their ostomy and do everything they with without many complications.  That's not to say that it's always perfect, some people have too many issues with their stoma and a reversal may be the best way to go. 

You likely have no firm date to make a decision, so I would continue to ask questions (especially your surgeon) and connect with other IBD advocates who have a j-pouch. I think you'll find it helpful to have both sides of the experience, not just the negative. 

Best of luck!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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September 17, 2019 5:18 pm  

Hi Ian, Welcome to the forum, Firstly it’s really pleasing to here of your return to health. Yep the reversal question is a difficult decision and one I don’t think any one has the right to call either way. Instead we can give our experience of what as individuals we have experienced, I have lived half my life with a successful ostomy, you seem to be coping well. I don’t have the choice but I see my stoma as just another part of who I am. Other options will flow and I hope this helps 👍

ileostomy 31st August 1994 for Crohns


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Dona
 Dona
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September 17, 2019 10:00 pm  

Hello Ian,

Like john said it great to hear how you have recovered your health. Nice!

And as Erik said, people choose to keep or reverse stomas for a lot of reasons.

In my case, I chose not to have a reversal.

First because I did get a great outcome, and like you have regained my health.

I am also much older than you . I had my surgery when I was 67 and didn't want to go though another one.

I also don't think I have enough plumbing left down there to make it all work well again. Just a rectal stump and no colin.  You probably have many other different things to consider as you decide what to do.

I'm not sure if there is any hard and fast rule about how long you can go and not be reconnected before the probability of a good  outcome changes.  Someone here must know.

I was also told ( before my surgery) that they would wait 4 months  after the first surgery in order to allow my body to recover before they do it. When I told my doctors that I didn't plan on a reconnect, no one tried to talk me out of it...hummm???. 

Good luck and keep asking questions, especially of doctors.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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IleosTony
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September 18, 2019 8:02 am  

Hi Ian,

 

Welcome to the community.  Eric, John, and Dona are absolutely right. One person's negative experiences with a J-pouch could never be a definitive predictor of how it would go for you. Human body configurations and physiology are standard in general but differ enough between individuals to render such prediction impossible to make with certainty. The best thing you can do, if you do receive input from people who have had experience with this, is to take it with a grain of salt and make sure you discuss all the risks and benefits with your doctors and then determine what is best for you based on what information you do acquire.

 

If I had that choice, I wouldn't have the J-pouch done. If it ain't broke, don't fix it, but that's me. Someone else might come on here and give you a different viewpoint. Most of us will probably tell you to keep the ostomy, as this is a site for ostomates, so perhaps someone on a discussion board for J-pouch recipients would be able to communicate a good experience with that. Frankly, too many people, including doctors, tend to stress risks over benefits, pros over cons, so you pretty much have to pull the pros and benefits out of folks to try and make the best informed decision you can about your own health.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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SqueakyandLiza
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September 18, 2019 10:07 am  
Posted by: @iancraft

 I've read plenty on the side effects and quality of life. 

Hi Ian,

I too have been doing research on this topic, as I recently had a scan to see if I was healthy enough to be reconnected. Unlike you, I have had a heck of a time with my ostomy, with leaks and the like, which was making me singularly focused on a jpouch. Also, I was not really suffering before my ostomy, so I don't see it as an improvement in my life. I found some testimonies on line from people who were very happy with theirs. Though, like you, I found there are more people who lean the ostomy way. 

As it turned out, it isn't a choice I have to make right now, as the Humira has not eliminated the Crohns like the doctor was expecting. I don't know if it is a choice I will ever get at this point, but will deal with it if it happens. Why borrow stress worrying about something that might never happen, right? 😀

But my advice to you is keep doing your research, keep asking questions, and try to imagine what your future would be like either way. As far as the thinking time, nothing says you can't just sit on the potty and think. Sometimes my hubby finds me there looking at Facebook on my phone and just laughs at me, but it is a real loss--that "me time"

Stick around here. This is an amazing group of people who can offer support in so many ways. Let us know what you decide!!  All the best to you!!

-Liza
“May your day be bright and your bag be light.”


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IanCraft
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September 18, 2019 11:30 am  

Thank you all for the encouraging responses. This forum seems like a great place and it's incredibly calming to be able to talk about the bizarre life and habits that we as ostomates now see as commonplace. 

 

I have another visit scheduled with my doctor to discuss the pros and cons here soon, but I am currently leaning heavily toward keeping the ileostomy. A few leaks every now and then and not sleeping on my stomach seem like a small price to pay for feeling this great. I was diagnosed so young that this year of no pain after the healing process ended has been incredible and it's hard to for me to give this up. I will definitely keep you all updated. 


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LK
 LK
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September 18, 2019 11:38 am  

Welcome IanCraft...so happy your doing well after all that time.  No matter whether it is a dissected topic or not, this is yours and now, and much easier to start your own forum pertaining to you then have to try and read all the other forums and see if they apply...time is important when you need to figure something out.  I am 61, 50 yrs with bowel disease.  In 1996, a total colectomy, Ileorectal anastomses with a J-Pouch changed my life for a little while.  Some JPs fail earlier some just keep on giving the energizer bunny a run for its energy!  Mine failed with incontinence in 2009 giving me the Ileostomy,  10 years in with the ostomy.  I had issues with the JP but got thru them anyways.  Still dealing with active bowel disease.  I have adjusted well with the ostomy!  A few things to consider to help you decide....are you able to do everything you did before the stoma, now?  Disease is unpredictable, so you may want to  consider progression time.   How big of an inconvenience is the pouching system for you?  How well did you tolerate surgery and surgical recovery?  Your age may be a factor?  Do you have auto immune issues? How active do you like to be and would you be more active without  it?  Are you well enough to be more active?  Does the system interfere with your lifes work?  Expences?  What has the system kept you from doing that you would do on a regular basis if you did not have it now? Scuba diving? Leaping from an airplane? Has the system been a bothersome issue for you, the thorn in your side kind of thing?  I know you said your health improved but, what was the reason for the improvement? Is this an embarrassing issue for you?  What about a fashion change, did it cause issues for you there? If your married or not, how does this affect your daily life with relationships?  How much do you enjoy crossword puzzles and magazines?  Okay, I am joking on that one. Lol.  Not that you haven't but think some of these things thru.  The list of pros and cons can be scoffed at,  but it is a worthwhile thing to do.  Some of us had to do this a few times and it can be tiring, but all the same, it gives you a chance to examine all your concerns and issues.  This is your choice, you have to live with it, and only you can sign that paper in the end.  Are the risks worth it to you?  Science can do so much these days and we are blessed to have access to it and the doctors and surgeons.  Also consider how well you tolerate medications and foods.  All the best IanCraft, do not be a strange! Ask anything you need to ask. Your decision  is respected no matter what you decide.

Linda  

Linda


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zhtfreak
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September 18, 2019 11:56 am  

Hi Ian,

 

The thing that struck me about your post is how happy you are with your regained health, and what that has done for your life. It sounds like you are able to do a lot more now, and that is worth more than it's weight in gold. I would agree with others here and say that if you're happy with the way things are, you should seriously consider just keeping the ileostomy.

 

Having said that, I am one of those that the J-pouch has worked out well for. I will share some of my experience, but as has already been said, I am only one person.

 

My situation was a little different than most here as I had my ileostomy done at birth as I had some complications from being a premie. Therefore, I have no memory of preostomy life to compare the J-pouch to. I had my stoma reversed in mid 1995 just after I turned 13. It took me a good year or more to be able to get things to a manageable level, although I don't know if that's because I had no prior control of my muscles, so they had to learn to contain things, just like a two-year-old being potty trained. I don't know if that time would be signifficantly shortened if you had used your bowels before having the ostomy.

 

I still have some minor issues, but looking at it now, I think the trade off ended up about even. I still occasionally have problems at night where I don't quite wake up in time to make it to the bathroom, but that's better than the huge leaks from the ostomy. I have also had a really noisy stomach ever since my reversal, and I'm still trying to figure out why it happens, since it's the thing I hate most that came along with the reversal. It's really embarrassing when people comment on it and sometimes offer me food. Even so, I'd rather have that than people noticing and asking questions when my bag would balloon or I'd get a leak.

 

I usually have between 4-7 BM's in a day, which I would think would line up with how often most people need to empty their bag. I did mine between 2-3 times a day, but that's mostly because I wasn't taught to care for my ileostomy on my own, so I had to wait for someone who knew how to empty to do it for me. Same thing with changing around once a week.

 

I didn't really have a choice in my reversal since I was a young teen and was totally dependent on other people. Had I been able to care for my ostomy on my own and had online resources like they do now, I don't know if I would've gone ahead with the reversal. There was a point when my parents were thinking the reversal wasn't going to work, and they almost set up a time to have the ileostomy made permanent. Now though, I think I am glad that I did it. I am not dependent on supplies, which I have heard can be pretty pricy, and the inconveniences I have now are preferable to the ones that would've come with keeping the ostomy. I'm sure in time that would've also worked out though.

 

Hope this was helpful. As others have said, keep asking questions and talking with your doctors. This community is a wonderful resource.

 

Brian


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SqueakyandLiza
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September 18, 2019 12:39 pm  

Thanks for sharing your story, Brian. It is nice to know someone a reversal has worked out for!!

Liza

-Liza
“May your day be bright and your bag be light.”


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