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Hi All,

I had J Pouch Surgery Sept of 2002. It was done is one step thanks to the fact that I keep myself in good shape. Since 2010, I have had 4 small bowel obstructions and been hospitalized each time til they cleared.
These have been getting progressively worse pain wise yet shorter in duration each time. Example is the last one, Dec 19 - 20. When I went to the ER, I was lying on the floor throwing up at a pain level of 12. I was NPO for 24 hours, pooped in 12 and went home the next day.
I have an appt with my surgeon on the 25th of the month to see where the problem is and determine the course of action.
Anyone out there had this kind of surgery?
I HATE the thought of them cutting into my innards again however, I more HATE the idea of another episode in the ER and hospital.
I am hoping it can be done laproscopically for a shorter recovery time.
Thanks all and happy pooping!
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Hi! I hope you're feeling better! I've had my pouch for 13 years & had my first & only obstruction last month. It was awful and something I don't want to experience again!! I think surgery should be a last resort. For me, there was a great deal of inflammation & narrowing high up past the pouch. A gastro-graphic enema study showed no high grade stricture, which is good. Doctors believe inflammation caused the narrowing which may have happened from multiple pouchitis problems close together...perhaps it traveled past the pouch. Anyway, I'm going to start cycling antibiotics for a while, & start taking VSL #3. Prior to this, I was on ZERO medication. I think you need to take 1 step at a time...have them take an in depth look to see what's going on internally...don't jump into surgery too soon! Good Luck!
I have had many obstructions and used to go to the hospital but nw drink 3-4 glasses of red wine while in a very hot tub and that has worked for the last year. Much better than going to er and waiting.
I was just told I had a stricture above the pouch and that I now probably have crohns so am seeing dr Shen at Cleveland clinic next month.
I have had two bowel obstructions after my surgeries. I had a 3 step surgery but also had a emergency surgery 5 days later after step 3 as my J-Pouch had a tiny hole. That ended in 1994.

5 years later I had a major bowel obstruction. I don't want to alarm you but as you know, if you think you may be having an obstruction, yes, you have to go to the ER. My first obstruction is one I will never forget and am lucky I survived it. But that was the worst pain I was ever in, throwing up like you did.

In 2006, I was not feeling very well, went to work, but after an hour or so, I told my boss that I think I am having a obstruction. Drove myself to the ER and sure enough, that is what it was. That time, it was not as bad. I was put on complete bowel rest so I was not allowed to eat or drink anything. I only got my nutrients through an IV.

And I completly understand about the ER. I hate going there myself.

clouseau,

I love red wine. Is that really beneficial for preventing an obstruction? If so, that is the best news I heard all day.

R
I have had a few but they are not always from the same cause...occasionally they are from an ileus (my small bowel falls asleep and does not wake up for a while, like post op or after certain meds like codine) and other times it has been a chronic kink in one area. Those are recurrent and last about 24 very scary hours each time but they have always resolved. I know that I have a narrowing/stricture due to adhesions in 1 zone but as long as I can survive with what I am doing I will not have surgery for it.
Sharon
Hey Diane and other fellow pouchers,

I thought I would also chime in to the conversation as I too have dealt with a few recent obstructions after my surgery. I had severe UC and ended up having the first surgery in December 2011. I had a bad obstruction immediately after the surgery and needed a second laparoscopic procedure to remove adhesions etc. After that, I did very well and had my takedown last May. Anyhow, I luckily adapted pretty quickly to the JPouch throughout the summer and returned to college in the Fall. One might after a long day or classes and labs, I had minor pain that eventually worsened to the point where I knew it was an obstruction. Scar tissue was the cause. I spent 4 days in the hospital, and it luckily cleared up on its own. I returned to class the next day and finished the semester with flying colors.

Then once more, while home a for winter break (about 3 weeks ago) I had another obstruction that felt like the exact same area in my abdomen. Fortunately, it wasn't as bad as the previous one, but I still had to spend 2 days in the hospital. Following my return home, I really was determined to figure out why this happened again, and if I could take any actions to prevent these painful, time-consuming ordeals. My surgeon ordered a small bowel follow through and we talked about what my options were.

Well, my small bowel test was completely normal and didn't show any areas of narrowing in my intestines. So I had and still have the option of choosing an elective surgery to remove some scar tissue, or to just keep fighting and hope it doesn't occur again. My spring semester started this past week. I've already missed a whole year of my studies with the UC and first surgeries, so I decided that if it wasn't an emergency, then I didn't want to undergo the knife again.

As of now, I'm feeling pretty good and taking it one day at a time. To me Diane, if you absolutely don't have to undergo the knife, I would try to find alternative ways of dealing with the obstructions. Although there isn't much we can do when they randomly decide to ruin our day, the best advice I can give you is what I tell myself everyday: fully embrace the pain of uncertainty and keep moving forward.

We can't let the fears of another obstruction keep us from enjoying our lives. While your body may falter at times, if you keep your mind strong, no obstacle will ever be too hard for you to conquer.

Also, I'm reading this fantastic book about keeping strong through any type of hardship. It's by a respectable physician named Dr. Alex Lickerman who currently practices at the University of Chicago Medical School. He mentions techniques from Nichiren Buddhism which are truly beneficial in helping to alleviate suffering. Anyway, I think many patients like us should read the book as it makes you start to think about how these painful experiences affect us all and can be overcome with practice. The book is called: The Undefeated Mind, On the Science of Constructing an Indestructable Self.

Good luck, and I seriously hope you find the strength and will power to keep on keeping on!

That answers that question as well. DON'T LET THEM OPERATE! I've undergone 4 emergency surgeries and am I screwed up now. A slow morphine drip was used the last time and worked. I can't believe what some surgeons have done to me in order to make their hospitals money. I am having a endometrian (sp.?)next week. If there is cancer present, I am not a candidate for a hysterectomy. Seems the 2 knucklehead docs in Newport Beach tacked my J Pouch to my uterine wall. My beloved doc in San Francisco told me some years ago, these "practioners" had done me great harm. And then some.

I am actually having this surgery next month. I can't say that I am looking forward to it. I too have had regular obstructions (every 6ish months) since 2011. Its draining, becuase in general I feel great! I eat a regular diet and lead a very active life, except for when I get am obstruction. I feel at this point I am kind of out of options.  The last time I was in the ER the doc, was encouarging me to have the surgery. All the Xrays, CTs, and drugs that I need for obstructions are not good for me in the long run either. I also live in a small town and if I have a big obstruction and need surgery, they don't have anyone familar with Jpouch's and who knows what kind of outcome I might have. My surgeon who did my orginal surgery, I fully trust. I also will have a quick scope this week to check my pouch, prior to the upcoming surgery. Hoping for the best! Good luck to all who are on this same journey, what a ride~

Results may vary As you know, we are all different, and the amount of adhesion development is different for all of us. I did have laproscopic adhesion lysis surgery after a year of issues with obstructions. My surgeon said she removed 2 or 3 obstructions from me (saw the pictures and better understood why I was having issue - my small bowel was squeezed so small). However, she told me she had just done surgery on a woman the day before who had 20-30 adhesions she removed.

 

I can tell you that my surgery was VERY successful. I may have had a few partial obstructions since the surgery, but no complete obstructions or incidents like I had in that first year. My opinion is it is worth a shot to relieve your symptoms. Ask yourself if it can be worse after surgery than it is now and then decide if you want to move forward.

 

Steve

hi , have you had the surgery yet? How are you doing?  I just had a mr of the pelvis & abdomen , ,y dr. Reccomends to remove a piece of the small bowel where my ostomy hookup was, due to obstruction, want to do it, for I'm uncomfortable every time I eat. & drink , but nervous of having surgery again & ruining what I have. Any advice? Originally Posted by Lyndse:

I am actually having this surgery next month. I can't say that I am looking forward to it. I too have had regular obstructions (every 6ish months) since 2011. Its draining, becuase in general I feel great! I eat a regular diet and lead a very active life, except for when I get am obstruction. I feel at this point I am kind of out of options.  The last time I was in the ER the doc, was encouarging me to have the surgery. All the Xrays, CTs, and drugs that I need for obstructions are not good for me in the long run either. I also live in a small town and if I have a big obstruction and need surgery, they don't have anyone familar with Jpouch's and who knows what kind of outcome I might have. My surgeon who did my orginal surgery, I fully trust. I also will have a quick scope this week to check my pouch, prior to the upcoming surgery. Hoping for the best! Good luck to all who are on this same journey, what a ride~

 

Originally Posted by Peti:
hi , have you had the surgery yet? How are you doing?  I just had a mr of the pelvis & abdomen , ,y dr. Reccomends to remove a piece of the small bowel where my ostomy hookup was, due to obstruction, want to do it, for I'm uncomfortable every time I eat. & drink , but nervous of having surgery again & ruining what I have. Any advice? Originally Posted by Lyndse:

I am actually having this surgery next month. I can't say that I am looking forward to it. I too have had regular obstructions (every 6ish months) since 2011. Its draining, becuase in general I feel great! I eat a regular diet and lead a very active life, except for when I get am obstruction. I feel at this point I am kind of out of options.  The last time I was in the ER the doc, was encouarging me to have the surgery. All the Xrays, CTs, and drugs that I need for obstructions are not good for me in the long run either. I also live in a small town and if I have a big obstruction and need surgery, they don't have anyone familar with Jpouch's and who knows what kind of outcome I might have. My surgeon who did my orginal surgery, I fully trust. I also will have a quick scope this week to check my pouch, prior to the upcoming surgery. Hoping for the best! Good luck to all who are on this same journey, what a ride~

 Hi Peti, 

Sorry I did not see this question until now. I am having a small bowel resection on monday where my ostomy site was. I am super nervous but so tired of trips to the ER, and blockages. I am still very happy with my choice to go through with my Jpouch surgery, this has really been my only hiccup! Here's to the future, I will be in touch.  Lyndse

 

Ok all,  haev had so many blockages I lost count. I was too stubborn for surgery. I death for 10 years. Spent every 3 months at least in ER. Finally could no longer eat. Had surgery removed about 25 although surgeon said it was not too bad. Had a few minor ones since then, only one hospital visit. But now something is happening again as my system last week started shutting down. Had this 5 years ago, different from the other blockages but could not eat! nauseau, distended, major gas, etc. So, now I'm back at NYP and they r trying to figure out what is the cause. The surgeon took a scope today but just found pouchitis, now wants GI to do a endoscope. Had a MRI enter gran? Spelling? Everything looks fine. Surgeon does not think pouch is causing this, maybe adhesions again? I'm tired of the same tests, same things, over and over and over. So far I held down food yesterday but still on IV drip which opened everything up. Looks like a long visit, G says something has to be done if they can figure out what. Adhesions don't show on tests Most of the time.

hi, thanks for replying, I am scheduled to have surgery on Aug 4, to remove part of the small bowel, at the old ostomy site. I'm very nervous, but feel if I do nothing, nothing will change. Otherwise I love my jpouch, it's been great. My recent problems started a year and half ago with developing a small bowel bowel bacterial overgrowth, due to dilation of bowel at ostomy site. Hasn't gotten better, so my Doc recommends the SX.   Please let me know how you do on Monday with your SX, my Doc told me , 3 to 5 days in hospital, 4 weeks to recover , what were you told to expect?  Also, curious what your prep for this sx is?  I've also been scheduled to visit my primary physician to be cleared for SX.  Where are you having the SX?   I'll be traveling 3 hours to Cleveland clinic to the Dr. That performed my jpouch. I wish you luck, and prayers! Hope not as much pain post SX as our big SX, I fear that��.  I'll wait to hear from you after your SX , to let me know what to expect.  I'll be thinking of you, I'm sure your in good hands. please be well!  Peti Originally Posted by Lyndse:
Originally Posted by Peti:
hi , have you had the surgery yet? How are you doing?  I just had a mr of the pelvis & abdomen , ,y dr. Reccomends to remove a piece of the small bowel where my ostomy hookup was, due to obstruction, want to do it, for I'm uncomfortable every time I eat. & drink , but nervous of having surgery again & ruining what I have. Any advice? Originally Posted by Lyndse:

I am actually having this surgery next month. I can't say that I am looking forward to it. I too have had regular obstructions (every 6ish months) since 2011. Its draining, becuase in general I feel great! I eat a regular diet and lead a very active life, except for when I get am obstruction. I feel at this point I am kind of out of options.  The last time I was in the ER the doc, was encouarging me to have the surgery. All the Xrays, CTs, and drugs that I need for obstructions are not good for me in the long run either. I also live in a small town and if I have a big obstruction and need surgery, they don't have anyone familar with Jpouch's and who knows what kind of outcome I might have. My surgeon who did my orginal surgery, I fully trust. I also will have a quick scope this week to check my pouch, prior to the upcoming surgery. Hoping for the best! Good luck to all who are on this same journey, what a ride~

 Hi Peti, 

Sorry I did not see this question until now. I am having a small bowel resection on monday where my ostomy site was. I am super nervous but so tired of trips to the ER, and blockages. I am still very happy with my choice to go through with my Jpouch surgery, this has really been my only hiccup! Here's to the future, I will be in touch.  Lyndse

 

 

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