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

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Marcie
(@shulmjs)
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Joined: 3 years ago
Posts: 1510
April 30, 2019 10:29 am  

Peter, my friend has/had a j-pouch--she experanced -sp- the same..  Got rid of it, and happier now with just the stoma pouching.  This was suggested to me also-but I refused once I got educated VERY WELL of this procedure. This works well for a younger person-- and that I am not-69 yrs. 

Once again as you know by now--This procedure is a whole learning of your training your mussels in that area.  For some it is great-for others, it was like before they received their stoma and pouching system.  so, they went back to being an ostomate.  Either way-we r looking for the toilet... :-)

Wishing you the best !! m.

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


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Zippy83
 Zippy83
(@Zippy83)
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Joined: 1 year ago
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September 6, 2019 4:33 pm  

I've had my temporary ileostomy for just about 7 years. Couldn't have been happier with it, especially compared with UC. But about a month ago I started having trouble getting the bags to stay on, the are falling off just about every night. I guess because my stoma is falling in on it's self. So now I am thinking of getting the j-pouch surgery. After reading this article, it's got me questioning the j-pouch. Should I maybe try to get my stoma fixed instead? Has anyone else had this problem?


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VeganOstomy
(@veganostomy)
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Joined: 6 years ago
Posts: 2978
September 6, 2019 4:42 pm  

The first thing before you consider additional surgery is to have a stoma nurse take a look at your ostomy and appliance. It's better to correct a potentially minor problem, rather than risk major complications. If step one fails, you always have step two. Best of luck!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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LK
 LK
(@dlkfiretruck)
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Joined: 3 years ago
Posts: 836
September 8, 2019 4:26 am  

@veganostomy

Hello Sir Eric...I watched that video on J-Pouches tonight for the first time.  It was excellent and full of information.  I have to say, that I was very impressed with the care and advice, that this surgeon gives to respecting and listening to the patient. Thank you for providing all the incredible information you make available to us all.   

Zippy83...hold the bus here...before you consider J-Pouch after 7 years you have to be sure that your rectal muscles and those further up can take the stress of stool once again. Incontinence from a weakness there is horribly time consuming and  embarrassing and it can happen even in your sleep. Knowing a J-Pouch has all its own issues, this is not to be considered lightly.   The muscles may never be strong enough again to work the may you think they should.  There are tests that can be done to find out if they are viable or not, and ofcourse exercises, but they are not 100% fool proof. A stoma can change for many reasons right down to weight loss or weight gain.  Have you noticed anything else going on with your intestine that may have got you to your stoma in the first place...re-occurrence of disease, blood in stool, stool changes, or?  Food changes?  Schedule changes and such?  I think it is wonderful you have had 7 years with your stoma,  and adjusted and accepted it, please, as Eric says, try and discover why your stoma is recessing first and solve the skin issues too.  It would be wise to check with your GP and he should send you to a Gastroenterologist for a review of your digestive system if you report any change there.  Yes, it would be nice to go back to somewhat normal bowel movements, but based on your acceptance of your pouch I think your normal is  right in front of you.  All the best, and be well! 

Linda

Linda


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Mike B
 Mike B
(@Mike B)
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Joined: 1 month ago
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August 21, 2020 12:23 pm  

Hello. I have UC and had my whole colon removed. Im scheduled for j pouch surgeries 2 and 3, but the end ileo osto honestly is not terrible. I have an “outie” and it’s high enough to clear my typical pants and 1 1/2” belt. (Right of Navel)
I want to leave it after 6 mos of no pain and not having diahrea in random places!

I hate having “elmo” stickig out of my stomach, but NO PAIN. With a extended wear bag and osto shield, I bike and swim whenever i want.

Buy extended wear 1 pc bags, nu hope rubber cement, q tips for touch ups, Ease Strips, eakin rings or barrier paste, and bulk removed wipes.


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maralee
 maralee
(@maralee)
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Joined: 4 weeks ago
Posts: 1
August 31, 2020 11:54 am  

Hey there all who have bowel issues:

I had to choose to either live with an Ostomy or have another surgery and get a J-pouch due to a rectum removal caused by Stage 4 Colon cancer.

I’m writing to share my comments & experience thus far because prior to my own colostomy and ileostomy and finally J-Pouch, I hadn’t read very positive things about the J-Pouch. I have Very Positive Comments from my successful reversal... so far😊👍😊

Today, 2 1/2 months after my reversal surgery, I am cancer free, Love my J-pouch basically from day one and am getting back into being active!

...post surgery I’ve played tennis twice, swam in the ocean twice, walked 3 1/2 miles 4+ times, snorkeled in the FL Keys (1 1/2 hour away from home w/o having to stop for a bathroom except once to just pee... So basically that was a five hour trip w/o having a bathroom emergency which was my fear) and I just bought a bike to get regular exercise.

This may not sound like a lot of exercise, but for two years I’ve had 7 surgical procedures, one to remove a small section of cancer in my liver, one lifesaving surgery due to a blockage and my 6+ hours rectum/colon/uterus/ovary removal surgery Jan 2020 to get rid of my cancer.

My final surgery and hopefully my last was my Ostomy reversal June 3rd 2020.

For 4 years I’ve been fairly sedentary
first because for two years (2016-2018) I lost a ton of weight & couldn’t walk far w/o diarrhea accidents (down from 140 to 106 lbs at my lowest weight) due to some type of IBS or IBD (undiagnosed due to lack of insurance), followed by excellent & successful intensive chemo & radiation & surgical cancer treatments at the Cleveland Clinic FL... (October 2018-Present) and in a few weeks I turn 67 y/o!

I used to be a runner and as much as I’d like to resume running, I haven’t wanted to press my luck with the pounding and have leakage accidents. My surgeon says I can do anything except power lifting (and that becuse I lost so much internal support organs)

I mention the Cleveland Clinic because they are renowned for their Digestive treatments and cancer treatments specifically Colon Cancer. They have at least two of the top Colon Cancer Treatment surgeons in the world & I feel blessed. The J-Pouch is their specialty. People come from all over the world to have these fabulous Doctors repair or fix botched or not working J-Pouches. My terrific surgeon (Dr. Eric Weiss, My terrific Oncologist, Dr. Nagarajan (who I credit with saving my life because he oversees my overall care) and my great Radiologist, Dr. Greskovitch... these 3 doctors saved my life so I’m still here for my nearly 23 y/o daughter who’s in college.

Make sure you get the best medical care you can ... Cleveland Clinic FL & Shands both Teaching hospitals are the only two hospitals with better than avg survival rates for stage 4 colon cancer and I’m proof. Many Doctors won’t recommend the Cleveland Clinic because they have a team-approach and you end up having everything you need done in one place instead of running all around the region to see various specialists.

Regarding my Ostomy (which I had from Sept 2019 to June 3rd, 2020) it was hit & miss / trial and error. From Sept. 1 to January 14, I had a colostomy & it worked quite well w/ some major blow out and leakages caused mostly by my inexperience and the wrond type/ size flange.

From January 2020 to June 3rd 2020 with my ileostomy, I had gained about 10 pounds which was very good really to be more robust going through my final surgery but due to a no longer flat tummy, I had regular frustrating ostomy leakages...

ileostomies are mostly all liquid (mine was) and until I want back to a Convex flange from Coloplast, I had almost daily leakages ugh ... very inconvenient and embarassing. The convex pressing around my stoma stopped my leakages but I didn’t discover the solution until about 4 frustrating months later...almost by reversal surgery time... June 3rd... my Ostomy was great & of course life-saving but I didn’t hesitate with the reversal and am sooo glad I did it (it had to be rescheduled due to covid-19 but I slipped into a window when elective surgeries were resumed.

Now post reversal I have “two belly buttons”...( not really... my Ostomy hole will probably flatten out as I continue to lose the weight I purposely gained to handle my surgeries). The only problem I had with my J-pouch so far was after the first week... I didn’t have a BM for 4 days and was feeling very bloated etc., Fortunately the nurse told me to switch to a complete liquid diet which got things going and at my 1 wk checkup, my doctor told me to forget the J-pouch diet w/o roughage they sent me home with and to go back to eating anything & everything I ate before & that’s what I did & I’ve been regular *(for me) ever since

... regular meaning 3 or more normal BM’s in quick succession every other day specifically... my BM’s aren’t I spaced out for some reason though sometimes I will have 4-5 BMs but usually 2-3 BMs all in close succession within about 30 min -1 hr. total and maybe another 1-2 BMs about 12 hours later. Then I skip a day or two depending on how much and what I eat. I’ve only had a few liquid-like BM’s when Diarrhea was most normal for me for 3 1/2 years before... And for me, they’ve mostly occurred early morning 6-8:30 am & between 7-midnight at night... every other day and sometimes I skip two days.

So far so good, no running to the ladies room yet. I can feel the urge (where I couldn’t “feel the urge to go” too well for about 1 month now I can... oh and I had very mild bladder incontinence for about 1 month and wore depends for about a month just to be safe. Now no depends and just the lightest panty liners for bladder drips.

I love my J-Pouch and am so grateful for my specialists and all the terrific staff at the CCFL which I would recommend to anyone... they took such great care of me and I would recommend them to everyone with bowel / cancer issues.

Feel free to email me @ [email redacted by moderator. Sorry, it becomes a spam magnet] for addl info.

Have a healthy happy Grateful Day

Maralee


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