Help - will this stuff ever end.??  My son is in need of surgery because they believe his intestines are twisting from scar tissue related to past surgeries to get a J-pouch.  He had UC.  I just don't understand  - will this keep happening?  Surgery will create more scar tissue so that scares me plus how much intestine do you have left to mess with after all these surgeries.  

Is this going to continue for the rest of his life in and out of surgery and hospitals?  I am at a loss - I feel like the picture is always painted as positive - like get j-pouch and all will be great but that hasn't been the case.  He's had chronic pouchitis (takes daily Cipro) and now this.  

Any advice and insight would be helpful.  

Thanks

 

Original Post

Hi. Very sorry that your son is going through this. I was told that blockages occur sometimes and that if it cannot work itself out within 24 hours, that surgery is necessary. My surgeon said that it is a standard rule not to "let the sun rise and set" on a blockage -- that if you need the surgery, it should be done quickly. I just mention this in case this came up very suddenly and you feel rushed. It's normal to rush into the surgery.

I think that the blockage risk is always there with anyone who has had abdominal surgery. It's just luck of the draw, I think, whether it happens. I was told that sometimes you can feel it coming on and if it's mild, you switch to liquids or just don't eat or drink for a while and it can work itself out. 

I don't think that if it happens once it means it will happen again. This could very likely be a one-time thing. There should be statistics on this that the surgeon should be able to provide you.

Sending good wishes for the surgery. 

Have been dealing with blockages for a few years since December was hospitalised four times vomiting and extream pain needing a GI tube they checked pouch with a scope all good then had another attack so went in and had surgery he was very surprised with the amount of adhesions I had and is hopeful this will resolve just three small cuts just have to wait and see if it works other than that he feels it could be machanical problem time will tell feeling good though at the moment 

I had my 3 step surgery in July 2008 and was hospitalized 3 times with blockages in the last few years, the last one 11 months ago requiring surgery to remove scar tissue.  I was in the hospital for 9 days.  But I don't think I lost any intestines in the process.  My wonderful surgeon told me that she'd probably see me again in a few years due to the continuing nature of scar tissue formation.   I hope that isn't in the cards for your son but if it is, there's really not any choice that I know of.    I'm so stubborn that I initially refuse to go to ER, certain that I will be able to manage the pain.   I finally give up, and acknowledge that denial doesn't work.     Best wishes to him for a speedy recovery, and to you as an obviously caring parent.  

Update - they thought it was a blockage went in laproscopically and found out it wasn't.  They basically said no scar tissue and not twist.  They suspect that his "modality" before the pouch isn't working correctly and is hold food.  There is no surgical fix and are going to experiment with chewing better and a pill to take if he feels like things are "stucK'  before vomiting and diarrhea.   Has anyone ever heard of this?  Any suggestions on foods or things to do to keep things moving?  

Thanks for the note.  I meant that the area before the pouch has poor motility.  They did not indicate any need for surgery.  I guess we just go back to regular lives and hope it doesn't continue to happen.  Thanks for the notes for all that replied.  He is home, eating (ever so slowly) and starting to heal.  

feirs1 posted:

Help - will this stuff ever end.??  My son is in need of surgery because they believe his intestines are twisting from scar tissue related to past surgeries to get a J-pouch.  He had UC.  I just don't understand  - will this keep happening?  Surgery will create more scar tissue so that scares me plus how much intestine do you have left to mess with after all these surgeries.  

Is this going to continue for the rest of his life in and out of surgery and hospitals?  I am at a loss - I feel like the picture is always painted as positive - like get j-pouch and all will be great but that hasn't been the case.  He's had chronic pouchitis (takes daily Cipro) and now this.  

Any advice and insight would be helpful.  

Thanks

 

Had over 50 blockages in 33 years. I found Phenagen and morphine usually works. 95 per cent.  Bad thing about Cipro- I took it for 20 years. Got neuropathy in my legs. Am a coach and teacher so it changed me. Be careful with Cipro!!  They took scar tissue out once. Took five years and it's back and more. But gotta do it soon. Hope this helps. 

Sorry to say it but my understanding is that some of us develop scar tissue more readily than do others.  Five years after my colectomy and j-pouch, I started having blockages.  Over the next two or so years, two hospitalizations of two days with IVs successfully cleared out my system.  At about year 7.5, I went to ER expecting to be there for the same treatment.  But my surgeon told me she had to operate, and I  spent the next 9 days in the hospital recovering.  She said it will likely happen again ... but hopefully not for several more years.  There's nothing to prevent it that I know of.   The good news is that I felt fine within a few weeks and continue to lead a normal, happy and productive life.  I laugh a lot and refer to my body as one of those exotic cars that runs great until it doesn't, spends more time than most in the shop, and thanks to a decent warranty, re-emerges ready to roll on for a few thousand more miles, then to do it all over again.  My good wishes to your son.  Please let us know how he's doing.  And you might take him a model car - his favorite - and tell him what I said.  I am grateful forexcellent medical care,  a highly supportive family and knowing that my problems are just mechanical and not something worse.  I remind my doting wife that there is always someone who has it worse,  and that I am a lucky guy to have issues that are fixable.  Oh, and when I said exotic, in reality I'm closer to resembling a HUM-V than a Jaguar.

Cheers.

 

Sunflower70 posted:

Hi. Very sorry that your son is going through this. I was told that blockages occur sometimes and that if it cannot work itself out within 24 hours, that surgery is necessary. My surgeon said that it is a standard rule not to "let the sun rise and set" on a blockage -- that if you need the surgery, it should be done quickly. I just mention this in case this came up very suddenly and you feel rushed. It's normal to rush into the surgery.

I think that the blockage risk is always there with anyone who has had abdominal surgery. It's just luck of the draw, I think, whether it happens. I was told that sometimes you can feel it coming on and if it's mild, you switch to liquids or just don't eat or drink for a while and it can work itself out. 

I don't think that if it happens once it means it will happen again. This could very likely be a one-time thing. There should be statistics on this that the surgeon should be able to provide you.

Sending good wishes for the surgery. 

 

Sorry about surgery! But I have had jpouch 34 years. Have had 80 blockages. In hospital 50 times. Anyway I was in for 3 days once and no surgery was done. 2-3 days about 5 times. Finagren and Morphine plus lots of fluids and I go upside down on a couch along with massage helps get rid of it. Good luck. I had scar tissue taken out 15 years ago. Now getting bad again!

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