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Originally Posted by Olive Oil:

       
I have had a J-pouch for 16 years and so wish I had an ostomy and now actually advise against the J-pouch surgery. As I tell people, 15 years from now you won't regret having an ostomy but you might regret having a J-pouch and you'll be stuck.



I recently had surgery number 13 to remove scar tissue because I had such a horrible obstruction and I asked if I could have a permanent ostomy while they were going to open me up anyway. I'm tired of living chained to a toilet. But they told me that now if they removed my J-pouch they worried I would lose too much of my intestines, be left with short bowel syndrome and possibly die from lack of nutrients.



So now I feel like my back up plan of getting an perm ostomy when I couldn't take it anymore has been taken away. I wish I would have forgone the J-pouch and gotten a perm ostomy 16 years ago.



Sorry to be another downer but I've had this a long time and I've had some good years with it but mostly it's been like having another form of IBD always active. And I've just now come to the decision that I'll advise against the J-pouch surgery if people ask me.



Some people do have great J-pouch experiences but even those great experiences can turn out badly later on.

       

I have had only 3 I Italian surgeries.  All pretty close together with the removal of my colon. 

I feel the same way that I have I BD Or IBS.  I feel constant  cramping... Urges to go.... It's just continuous.  No let up.
Exhausting.  When I do have a day where my abdomen is relaxed it feels so good.  But it is rare.
I cannot imagine 13 surgeries.
After my third open surgery I didn't want to be here anymore.  It was terrible.
Richard.

I got my pouch back 2009. After my surgeries. I had 1 surgery to correct my intestine  being in a knot. It took a long time for me to learn what I can eat and drink. I thought I was going to die. It was the worst thing I had ever had to go through. But after about 6 months of healing and learning what I can handle. I started to feel good, was back to work having some fun. Still was nervous to go out to places, going to the rest room 10x a day. At this time I was taking lomotil and Tylenol#3 3x a day. Then I really got myself on a good diet. At my one year mark I started going 7x a day and had more of a solid stool. Feeling more confident to venture out, not constantly thinking where is the rest room. Started to take less tylenol. 2 years in I was on and still taking 2lomotil 3x a day. I can eat and drink most anything now.  I no this is not proper grammar and probably spelling mistakes, but to me this is a success story.  I used this site when I was having a hard time and got allot of great info and tip's. I just want you all to know there are allot of us out their that have had great success with a j-pouch.  So thank's to all of you're help and support I have made it!! Thank's Chuck S.

Originally Posted by powder:
Originally Posted by Ronald:
I am having the surgery in 1 week.I come to this forum to find success storys but never seem to find any.Is it really that bad or all the people that are visiting this forum looking for answers to problem s? I'm beginning to have 2nd thought s now.

3 years ago i continually read all the forums about Jpouches it was always terrible, i begged my husband to keep his ileostomy ,due to my research and the forums he said he did not want to die wondering. He had the pouch it was 8months of sheer hell he almost died, the second Ileostomy has been a huge success we have been overseas, he eats everything he chops food up small, he even has nuts, sure its never going to be back to normal but he now has a life. before he could not eat hardly anything ,he was constantly in but pain ,in and out of hospital on that many meds, he now takes the occasional panadol, 

 

I have had a functioning J-pouch since June 2014.  I will admit that I had many days and nights when I questioned whether I made the right decision and wished I could just go to sleep and not wake up.  It was hell, no doubt about it and to top it all off, I had 2 bouts of pouchitis back-to-back.  However, once I made it past the first year and got the pouchitis cleared up, life has been grand.  I can honestly say that I feel perfectly normal for the first time in many years.  I am still learning what foods to avoid and I take 16 Immodium per day as well as one dose of Metamucil.  This keeps my BR rate at 4-5/day and thick enough to avoid any burning.  Although it's only been 4 months that I have felt really well, I am confident that it will continue.  I am very glad for my J-pouch now but only time will tell if things continue to stay well.

I hated the ileostomy so much that there was no question about the J-pouch surgery in the beginning.

I am post takedown now a little over 5 months. I have never had any trouble with UC symptoms. I was admitted into the hospital from the ER and spent 2 weeks in the hospital. After 1 week of being treated for inflammation and did not work I had to have my colon removed, therefore the operation was not elective. To make a long story short, I am averaging 3-7 BM. This is a dramatic improvement because 1-2 weeks after surgery, I was going sometimes 23 times a day. My doctor said it takes up to a year before you get back to 'normal'. I am confident after a year it will only be better! I stayed active this past summer with swimming, walking and I finally am back to riding my 4 wheeler which is great!!

Good luck with your surgery.

Twenty six years ago I was bleeding to death and needed surgery to live.

I suffered with horrible UC since an eight year old child.

My j-pouch is still holding up after 26 years.

Yes, I had some uncomfortable moments, along with two obstructions back to back in 2007 & 2008, but I worked for 20 years in an executive position and did traveling to several areas in my work.

I thank God, for my surgeon saving my life and I  can only hope for your success with the same surgery.

Good luck again,

Testy

Originally Posted by powder:
Originally Posted by powder:
Originally Posted by Ronald:
I am having the surgery in 1 week.I come to this forum to find success storys but never seem to find any.Is it really that bad or all the people that are visiting this forum looking for answers to problem s? I'm beginning to have 2nd thought s now.

3 years ago i continually read all the forums about Jpouches it was always terrible, i begged my husband to keep his ileostomy ,due to my research and the forums he said he did not want to die wondering. He had the pouch it was 8months of sheer hell he almost died, the second Ileostomy has been a huge success we have been overseas, he eats everything he chops food up small, he even has nuts, sure its never going to be back to normal but he now has a life. before he could not eat hardly anything ,he was constantly in but pain ,in and out of hospital on that many meds, he now takes the occasional panadol, 

 

My J-pouch surgery was not because of UC or inflammatory bowel disease, although I did have that in about 10 inches of my bowel. I had colon cancer along with Lynch syndrome, which is a genetic mutation that makes colon cancer much more likely. I have had a J-pouch for 4 years and have not had many problems. Yes, things are not like they were, but I pretty much eat whatever I want and just deal with the embarrassing parts of public bathrooms. I may have had pouchitis once or twice, but have not taken antibiotics. Basically, I am doing fine and I know everyone is different, but I have several friends who are doing fine, too. I just had my first obstruction, which makes life not too fun for a short while.  The truth is, everyone has some challenge in their life, so I think a good attitude will help get us through hard times. No one can say do it or not do it. You have to decide that for yourself, but there are success stories out there. Some people have very, very few problems. Some people have a LOT of problems, and I suspect most people are somewhere in-between. 

Originally Posted by Muddygirl:

I am post takedown now a little over 5 months. I have never had any trouble with UC symptoms. I was admitted into the hospital from the ER and spent 2 weeks in the hospital. After 1 week of being treated for inflammation and did not work I had to have my colon removed, therefore the operation was not elective. To make a long story short, I am averaging 3-7 BM. This is a dramatic improvement because 1-2 weeks after surgery, I was going sometimes 23 times a day. My doctor said it takes up to a year before you get back to 'normal'. I am confident after a year it will only be better! I stayed active this past summer with swimming, walking and I finally am back to riding my 4 wheeler which is great!!

I hope that you have nothing but a successful Jpouch,

 

I would definitely consider myself a success story.  I've had my j-pouch for 5 years and have had no major issues.  I eat and drink whatever I want, with some minor rumbles or loose stool occasionally depending on what I've eaten.  I have to agree with those who have said it already:  most people who come to the forums with questions are  having issues.  Before my surgeries I came to this site and others to find out exactly what it was that was going to be done to me.  You can come away in a daze, I understand!  The next time I visited my doctor I started asking both her and the stoma nurse all kinds of questions.  They both told me the same thing:  to remember that most people visit the forums when they are having trouble and are looking for advice. The folks that aren't having any issues aren't sitting on the computer looking for answers, they're either at work or out living their lives.  I find this very much to be true.  I only come here occasionally just to see what's new, but most of the time now the fact that I have a j-pouch doesn't even enter my mind.  Good luck!

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