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Permanent Ileostomy vs. J-Pouch  

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CWilliams97
(@cwilliams97)
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18/07/2019 10:34 pm  

Hey guys, back again. I just had a follow up with my gastro doctor the other day and i've noticed that she (my gastro doctor), my primary care doctor, and my colorectal surgeon have all told me that the permanent ileostomy is a "perfectly great option" when comparing it and the J-Pouch but yet they all 3 have been trying to convince me to pick the J-Pouch. I've got to choose one or the other in Novemeber when i finish my colon removal and after having my Ileostomy for almost 9 months i absolutely love this lifestyle and i'm pretty conviced i want to choose this over the J-Pouch. My question is does anyone know why so many doctors are trying to convince me to go J-Pouch? I'm 22 years old with more college to go and my doctors keep talking about getting me "back to as close to normal as i can get" by picking the J-Pouch but honestly the J-Pouch sounds like such a downgrade from the freedom the Ileostomy has given me which i absolutely love. Thanks for the input!


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LLNorth
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19/07/2019 1:18 am  

  A big decision to make - I have no experience with iliostomies or j-pouches but I know you will do your research! What are you going to be studying in college? Do you have a major?

I love the smell of coffee in the morning. It smells like .... victory.


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john68
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19/07/2019 4:27 am  

Hi cwilliams, The interesting quote is “back to normal” what is “normally” well I think it’s something that works and leads to a normal full life.You seem to be doing that. I had my ostomy at 25 and it has served me well. All that said it is a personal decision and all we can do is give u our thoughts. 

ileostomy 31st August 1994 for Crohns


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SqueakyandLiza
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19/07/2019 9:10 am  

Hi Cwilliams, I think if the ileostomy makes you happy, you should keep it. From my perspective, I wasn't having any problems except for a couple months before my surgery, and I've had my share of problems with leaks from the ileostomy, so for me the jpouch is something I would want to try, because I would see it as an improvement in lifestyle for me. I should find out in a month or so if that is an option, but I'm suspecting and preparing myself that I won't have the option for a jpouch. 

Not trying to influence you at all, but one thought is, if you do the jpouch, you can always go back and get the ileostomy back, but once you make that ileostomy permanent, you no longer have the jpouch option. 

Whatever you decide, the support of the people here will help immensely. At least it has for me. 🙂


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VeganOstomy
(@veganostomy)
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19/07/2019 10:37 am  
Posted by: @cwilliams97

My question is does anyone know why so many doctors are trying to convince me to go J-Pouch? I'm 22 years old

Without knowing these doctors or the content of your conversations with them, I can only guess that they believe you would prefer a j-pouch over an ostomy, perhaps due to your age.

Posted by: @cwilliams97

my doctors keep talking about getting me "back to as close to normal as i can get" by picking the J-Pouch

Many patients believe that a j-pouch is the holy grail of surgery because it gives more of an external appearance of "normal" to them.  I wouldn't blame any doctor for making the assumption that their patients would prefer a j-pouch (at least on paper), but do wish that more patients who are faced with this decision are given as much information as possible on both ostomy and j-pouch surgery before making a choice. 

My flowchart for this problem would likely look like this (had I been given a choice):

-> Has my ostomy been problem-free, easy to manage, and allows for the freedom I want?

If yes, then I'd likely stick to it.

If no, then I would look further into getting a j-pouch, keeping in mind that things may stay the same, get better, or maybe even get worse. Those risks should be discussed with your surgeon.

It's not an easy choice, unfortunately, but I hope you find some clarity and aren't rushed either way. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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CWilliams97
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19/07/2019 10:53 am  

Thank you guys again for the input. I plan to finish college with a Microbiology major mostly because i love doing labwork and studying diseases and such on smaller scales like that. But about my ileostomy i have absolutely loved having it. In my 9 months or so of having one i have yet to have a leak or any major problems that i haven't been able to solve with a simple change or a product change/addition. My guess as well for the J-Pouch suggestions was also that the doctors assume that the majority of people do not like having an ileostomy and that most would want to be back to a typical bowel function for vanity reasons or what not, but so far i'm quite inclined to stick with the ileostomy. I ended up with quite bad anxiety about incontinence when i was dealing with my ulcerative colitis over the past 3 years and my biggest concern with the J-Pouch is going right back to being anxiety ridden and just causing myself to be back to square one whereas with the ileostomy i just don't even have to think about it.


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SqueakyandLiza
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19/07/2019 11:47 am  

Sounds like you have thought it through and come to the decision that is best for you. All the best to you!!


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Bill Bell
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19/07/2019 6:22 pm  

I have had an ileostomy for three years and have no problems with it.  I had ulcerative colitis as the reason for the stoma.  I still have ulcerative proctitis in the rectal stump and a colo-rectal surgeon wanted to give me a j-pouch.  I don't think so.  My next procedure would be to remove the rectal stump and not try to use it. 

Best of luck with your decision on what to do.

Bill
Ulcerative Colitis... Ileostomy June 2016


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sjlovestosing
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20/07/2019 4:47 pm  

Hi CW, 

I think you've made the best decision for yourself. I was in a position where I had a choice between chemo and radiation or having my anus and rectum totally removed and living my life as a permanent colostomate. I chose the latter. I made the decision that was right for me - I have no regrets with it. I am living a much fuller, happier life.  Are there moments where I wished things had worked out differently? Of course, but then the reality that I am still alive and kicking makes me grateful to God for this second chance that He has given me!

God bless,

Stella


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UCtoOstomy
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23/07/2019 2:37 am  

I thought I'd share my current experience on this topic. I have been 'living' almost 3 years with an ostomy after 'suffering' with Ulcerative Colitis for nearly 10 years.  I am a candidate for a J-pouch, but am also aware that the window of opportunity is about 7 years due to the function of the muscles that keep your butt closed.  My surgeon also encouraged me to try a J-pouch but I fear the devil I don't know vs the one I do.  My ostomy gives me freedoms that I'd lost due to UC and I am getting more comfortable everyday.  There are many pros and cons to living with an ostomy and a person needs to evaluate their situation.  Supplies can be expensive, leaks can happen and life goes on.   Good luck with whatever decision you make!  


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Dona
 Dona
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23/07/2019 1:24 pm  

I have had a very similar experience and outcome as UCtoOstomy. After nearly four years of total incontinence I had my colectomy and got my new stoma. My life changed so much for the better at that point that I never wanted to revisit that time of my life ( illness, surgery, incontinence) ever again. I was in my late sixties at the time, and further surgery just seemed like a bad idea.  It works and I am healthy.

 

Another issue for younger women like CW was how further surgery might add to abdominal scaring, especially near the ovaries. This, I think can lead to issues with fertility and should also be discussed.

 

I also have had doctors wondering why I didn't want the J pouch and to be 'fixed'....I am NOT BROKEN!

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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LK
 LK
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31/07/2019 11:13 am  

@cwilliams97

Hello and welcome again! I had the j-pouch, before my ileostomy about 12 yrs. I truly felt it put off the ostomy outcome in a bad way. The urgency and proverbial ring of fire, painful burning sores that prevented me from doing so many things and activities I loved.  After looking back on the years I rushed frantically to the throne, removed my young children off the pot so I could use it, and all the tins of baby rash cream, Penetin, I had to buy, to treat watery, acidic poop burns, was not only  expensive, but my social life suffered badly, I had to cancel so many outings for myself while my family went anyways (on my encouragenent). The few intermittent years it worked didn't make the difference for me to say it is something I would recommend. Lost sleep, incontinence, worry, not being believed by doctors, critism, insinuations, accusations, countless painful scopes, embarassement, and always having to explain myself...nope, never again.  I still had the same symptoms as before. If your eventually up for an ostomy, or are thinking a reversal, and a j-pouch is suggested, ask why put off the inevitable? One more surgery is one more surgery! The risk of retraining muscles to work with the amount of pressure behind explosive bowel movements, of the j-pouch, so not worth it to me. Tho a personal choice, and not one I was given, I know that if I could have avoided the years of pain, and anxiety, I certainly would have. You have already had the stoma get along with it, know the life style, why throw an internal pouch in the mix? I think you have to ask yourself, the difference between an ostomy by way of an accident and injury, verses  a disease. Disease is likely there for life. Your young, your smart, your active, why retrace your steps? This is your choice in the end, your life, don't crumble under the pressure from anyone who has never been there, done that, and likely never will. I wish you all the best. Being well comes in many forms.

Linda


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