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Why Wouldn't You Get a J-Pouch? (w/ video)  

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VeganOstomy
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May 2, 2017 11:00 am  

Have you had a J-Pouch or are you considering one? Leave a comment below and share your experience.

My written article about this topic can be found by clicking on the link below.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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VeganOstomy
 VeganOstomy
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May 2, 2017 12:11 pm  

Have you had a J-Pouch or are you considering one? Leave a comment below and share your experience.


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Cecilia Boggero
 Cecilia Boggero
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May 12, 2017 7:41 pm  

Hi Eric, great video, as always! I've been following you for a while now and your videos have been very useful to me!
I'm Cecilia and this is my experience about j-pouch: I've had UC for 4 years and I wasn't responding to any of the available medications, apart from steroids. So, last year I had total colectomy with a temporary ileostomy. I spoke to my surgeon about risks vs benefits. I was very worried because I'd heard a lot of bad stories, but he's a great doctor and explained me everything. He also told me that if anything went wrong after reversal, I had the option to get back to permanent ileostomy, but it wasn't possible to do the other way round (getting j-pouch after having permanent ileostomy).

I'm Italian, so the cost of ostomy supplies here isn't a problem at all, because we have them for free. I also had great stoma nurses, who gave me a really great assistance and my stoma was working perfectly, but I decided that the reversal was worth a try anyway, because I really trusted my team of surgeons in Milan.
Well, It has been 2 months after reversal and everything is perfectly fine up to now! I never have to rush to the toilet anymore (I have max 4/5 movements in 24 hours, but they're not "urgent", I'm in control and I can decide when to go). I eat almost whatever I want, I don't have to take any medications and my life got back to normal finally! So for me it was a good experience and I'm so happy I didn't go for permanent ileostomy without even trying reversal.
I know we're all different and I also know that it's hard to have another surgery when you already went through a lot, but I'd suggest to try a reversal to anyone who can have this option and if anything goes wrong they can always get back to permanent ileostomy.

Thanks again for helping people like you do, you're a great advocate. Keep up the good work! All the best :)


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VeganOstomy
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May 12, 2017 8:07 pm  

I'm so glad that you're doing well! I think that many people with UC ultimately decide to try the j-pouch knowing that they can go back to an ostomy if they had to. I'm glad those options exist :)


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JM
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May 19, 2017 4:40 am  

I had my pouch made in 2001. My surgery was elective and my options were:
a) proctocolectomy with ileostomy in a single surgery
b) proctoclectomy with pouch formation and loop stoma with takedown to follow later.

Both solutions are imperfect and can come with countless complications so rather than focus on that I chose to look at the positives. That made the decision easy. Having no experience of either it was obvious to me that, if I was healthy and everything else were equal, living without a stoma was much preferable to living with one. If, like many others, I had already had a colectomy and was living with a stoma I suspect the decision would have been much more difficult. Actually, I know that would have been the case because when I was called in to hospital for takedown I considered not going through with it and keeping the stoma. Obviously that didn't happen and here I am 15 years on. It's probably fair to say I am at right at the top end of the success scale, eating and drinking whatever takes my fancy (just as well as I'm a bit of a foodie) and my pouch never gets in the way of anything I want to do. If it were not for the work I do with other patients I probably wouldn't give my pouch a second thought.

Having said all of that, pouch surgery is not for everybody. The decision is highly personal and will be influenced by your own circumstances. It's also important to understand that success (however you define that) is not gauranteed and you do need to be prepared for that irrespective of which route you decide to travel down. Good luck to anybody going through this process, it can be an arduous journey but the end results can make it well worth it.


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JM
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May 19, 2017 4:41 am  

My pouch made in 2001, and put into active service mid 2002. My surgery was elective and my options were:
a) proctocolectomy with ileostomy in a single surgery
b) proctoclectomy with pouch formation and loop stoma with takedown to follow later.

Both solutions are imperfect and can come with countless complications so rather than focus on that I chose to look at the positives. That made the decision easy. Having no experience of either it was obvious to me that, if I was healthy and everything else were equal, living without a stoma was much preferable to living with one. If, like many others, I had already had a colectomy and was living with a stoma I suspect the decision would have been much more difficult. Actually, I know that would have been the case because when I was called in to hospital for takedown I considered not going through with it and keeping the stoma. Obviously that didn't happen and here I am 15 years on. It's probably fair to say I am at right at the top end of the success scale, eating and drinking whatever takes my fancy (just as well as I'm a bit of a foodie) and my pouch never gets in the way of anything I want to do. If it were not for the work I do with other patients I probably wouldn't give my pouch a second thought.

Having said all of that, pouch surgery is not for everybody. The decision is highly personal and will be influenced by your own circumstances. It's also important to understand that success (however you define that) is not gauranteed and you do need to be prepared for that irrespective of which route you decide to travel down. Good luck to anybody going through this process, it can be an arduous journey but the end results can make it well worth it.


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VeganOstomy
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May 20, 2017 12:23 am  

Thank you for sharing your story.


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Marcie
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February 3, 2018 4:57 pm  

I know that age is also a factor. Along with your health.. I know one woman that had the J. pouch ands he was determined to do this.. She was 55 years old. She had a bit of a time of training her mussels to hold and to let go of movements. Even tho, she was only into a stoma for 4 months.. But as you stated, she was so wanted this!! She became more of more worries of the bathroom trips with the J-Pouch than before her stoma arrived. -Another fellow, had a J-pouch, worked really hard to make this work. As an sales man and traveling overseas, He just gave up and went back to his stoma. I personally wanted a J-pouch, but due to my health, at the time and then my age? Would have been a wrong move.. The less surgery the better I feel.. Wanting to be normal again some will try anything -- but as you age with a J-Pouch? There are problems of concern to deal with.. And back to the stoma later on in life.. S.O.L. as always.. My best to those that go for it, and these days so much newer advancements / and your Dr. says O.K.? and your mind is go for it? do it.. Youth is best.. Enjoy your life with your J-pouch.. Kindy let us know how everything goes.. Knowledge for everyone here is always welcomed.. We will always support you.. Best. M.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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AnaM
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September 28, 2018 8:48 am  

I had only experienced bouts of colitis which were ended with prednisone for 2.5 yrs with a good deal of “normal” time in between before i was taken to the ER and admitted for what ended up being a month and two surgeries. prior to the full removal of my colon, two doses of remicade were attempted without success, and it was really only once i was told i would likely die that i agreed to allow it to be done.

after the removal, the stitches came loose and started filling my abdominal cavity, so another emergency surgery was required. i lost 25 lbs during this experience and left the hospital at 5’6 weighing 114 lbs, and it’s a struggle to keep weight on.

now i’m home, and completely lost emotionally. i cannot deal with my stoma, this thing i never wanted, never actually thought i’d need. thankfully my boyfriend is not as easily disgusted as i am, as he changes it and deals with my complaining more patiently than a nurse. The skin around my stoma is completely raw and every movement feels like burning and i’m in constant pain. i still have rectal cramping and discharge blood and mucus at least 2x a day, and yes my team knows all about it. i have low iron, feel extremely weak and tired all the time, the bag has failed me the last two nights leaving me to wake up covered in poop.

in my former life, i was a bartender at a nightclub, i wore dresses every day and embraced my femininity. 42 yrs old, but look 30. i worked out, ate healthy, didn’t smoke and generally tried to make good choices for my health. i loved my life.

There is not a single thing that gets me through each indignity, all the pain, the depression, the isolation i feel, than the belief that this is temporary and i will get that life back via J pouch surgery.

Because i was already so sick going into the hospital and had to have a second emergency surgery while i was there, i am being told 6 months before the next of possibly 2 more surgeries to get rid of the bag, but you could say 100 and I’d still sign before the ink dried.

My situation is a bit different than most as i am finding out; i was given no time to prepare for this, and ultimately felt i had no real choice, so perhaps that’s why my attitude is so poor about the stoma and so pro J pouch. i don’t know, but i am living for the day all the clothes that i cried and boxed up labeled “cute stuff i may never wear again” are again unpacked and i can be who i am again.

thanks for listening


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VeganOstomy
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September 28, 2018 9:59 am  

Hi AnaM,

I'm so sorry that you've been through all that. It's certainly a lot to process given the urgency of it all, so I can imagine how you must feel.

Do you have a qualified stoma nurse who can help you out? At least to tackle the raw skin? Getting that sorted out will go a long way in preventing any leaks you might have, and will improve your quality of life considerably! I experienced burning, raw skin in the beginning too - had many leaks. Many people do until they find something that works for them. The good news is that once your nurse has come up with a solution, your skin will heal very quickly and things will stabilize for you.

I also hope that your healthcare team is helping you sort out the underline health problems you've had. Anemia is terrible - I've lived through it, but it can be corrected and you will start to feel energetic again.

Please don't feel as if you're alone through any of this. If you can't find local support in your community, please consider joining my Community forums (www.veganostomy.ca/community) to ask questions.

Take care,

Eric

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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September 28, 2018 11:46 am  

Hi AnaM, Its no wonder you are feeling like this after all you have been through. you have been given life changing surgery and it like being walked to the deep end and thrown in. No one can have peace with an ostomy with burning skin and leaks, but I can tell you these can be sorted with help from the stoma nurse and help on here. The normal life you enjoyed you can and will get back. The road back starts with the current issues. Please take Eric up on his offer and join the forums which you can use in conjunction with help at home. Ostomy or J-pouch is will be of use. Best Wishes.

ileostomy 31st August 1994 for Crohns


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LK
 LK
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September 29, 2018 3:25 am  

After what I have been through, I think I would still take the J-pouch,as it had been my first and only option at the time. Knowing what I know now, If an Ileostomy had been a choice, I would have taken that instead. A stoma travels well most of the time. Once you get the process figured out, it is easy enough to deal with. Though,the timing of the stoma is not always spot on, it has made my life more livable. I have a better confidence now then I ever had because of it. There is so much I do not miss from the J-pouch. Painful rectal spasms, burning and rashes, and knowing I may not make it to the nearest washroom without a huge embarrassing situation. Especially that deep inner fire when it becomes inflamed...nope, do not miss it and will take the Ostomy on a dime. Neither would I have the surgery to reverse one. If things are working out, and my health is good, and there are only little issues, I would not go thru another surgery. That is not to say that I would not encourage someone to try it. I think that would all depend on what there disease does on average. The old pros and cons thing comes in here strongly and you have to weigh all your options. People talk to people on this sight. Questions are asked and experiences are heard and taken into consideration. That is all important to anyone facing a possible surgery.

Linda


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Valerie
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September 29, 2018 10:15 pm  

My surgery at age 23 was supposed to be two-part with a J-pouch as the end result. I had been on so many steriods that the surgeon said trying to hook up my small intestine to my rectum in preparation for the J-pouch was like trying to sew cheese. He stripped the membranes from my rectum (saving me from the possibility of colon cancer later), but left the muscles intact, giving me the option to wait 6 months to convert to a J-pouch, but set-up for a permanent ileostomy if I chose that. I had been very sick with UC before surgery- couldn't work and was told not to get pregnant. The surgery was the first surgery I had ever had, was 9 hours long, left me stapled from ribs to my pubic bone and in the hospital 3 weeks. When I finally recovered, I was SOOOO happy not to be running to the bathroom in pain all day, and certainly didn't want another surgery, so I kept my ileostomy, and never looked back! 

UC at age 18, 1981. Diagnosed at 20, proctocolectomy with permanent ileostomy at age 23, 1986.


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Joe
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October 9, 2018 10:55 pm  

I have a question for those who had an ileostomy bag and decided to have the J pouch procedure that failed. From my understanding, if the pouch fails and you go back to the bag.... you lose those 12 inches of small intestine that has to be cut off to remake the new stoma for the permanent bag. Are there any new side effects or do you continue to live the way you initially did when you had the bag? Has anyone noticed or had any nerve damage from the many surgeries?


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VeganOstomy
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October 10, 2018 2:23 pm  

Hi Joe,

I can't answer through experience, since I've never had a j-pouch, but many times a failed j-pouch can be redone or recreated. Success rates drop with every surgery and each surgery presents new risks.

Any surgery in or around the rectum may lead to nerve damage in that area, but each surgeon is presented with new variables every time a new patient comes in. 

Here's a really, really great video on failed j-pouches, which was given during AIBD2017 (I was there but missed this presentation!).  NOTE: Some graphic content and lots of doctor- speak. Still insightful: 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Perkling
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October 21, 2018 12:33 pm  

I had my jpouch created in '93 due to ulcerative colitis.  A year ago I had it disconnected due to a large - 10 cm. - abscess that fistulized and became septic - this was just the last straw, on top of the pouchitis and cuffitis and strictures and a previous RV fistula, and a new Crohn's diagnosis.  So, for a year now, I've had the jpouch inside me, but totally disconnected with an end ileostomy.   I am actually scheduled to have the pouch removed on Oct. 29th .  But in response to the question, I haven't noticed any problem with missing those small intestines that were part of the jpouch but which are now not in use.  My ileo was "high output" for maybe the first few weeks, but settled down and in my opinion seems to be fairly "normal".   Of course, I can't really compare my output to others but for me if seems normalish.   As for nerve damage, there was none in the jpouch creation, or in the recent disconnection and ileo creation, which was done laparoscopically.  Hopefully I won't have to update this after the 10/29 pouch removal - that one will be done open through the abdomen and through the anal area.  For reference, I'm a female, 62, and in pretty good shape otherwise.  

 


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VeganOstomy
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October 22, 2018 1:50 pm  

Thanks for sharing that, Perkling. Best of luck for your upcoming surgery!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Peter Charles Warren
 Peter Charles Warren
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April 27, 2019 7:10 pm  

I have a JPouch & am not too sure if I am happy with it. When I had the stoma between surgeries it was great & easy to handle. The jpouch is always busy & I find myself going to toilet up to 15 times a day some days. Sometimes I go & immediately after want to go again. I am meeting with a surgeon this week as I want to consider going back to a stoma. Has anyone been through this process & are you pleased with the result.


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VeganOstomy
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April 29, 2019 9:33 am  
Posted by: Peter Charles Warren

 I am meeting with a surgeon this week as I want to consider going back to a stoma. Has anyone been through this process & are you pleased with the result.

Hi Peter, I hope that your surgeon has a few options for you. Your experience is not uncommon, but there are several variables that might be at play here. 

How long have you had your jpouch? What brought you to needing surgery? What is your diet like? These answers may lead to clues about why you're using the bathroom as often as you have. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Peter Charles Warren
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April 29, 2019 10:27 pm  

Have had the jpouch since 2013 as I had UC for 10 yrs previous & bowel was removed. During ops I felt the stoma was great but the jpouch has never really been what I was told I would get. For example I was told to expect toileting up to 6 times daily. Never had that!! Basically tried different diets but generally just eat basic food. No grains, seeded fruits, pork, spicey foods etc. Just meat & veg really. When I took Ciprofloxacin I was great.
Most days I probably toilet up to 12 times & have had nights with that many as well. My jpouch doesnt seem to be able to store very much & I have to position most days near a toilet.Sometimes I experience a lot of pain before toileting & such a relief when I go, actually that happens most days. Very Frustrating


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