Follow up surgery for Jpouch issues in June

Hi Lindsey, your story similar to mine. I had my surgery in 2004 and no troubles until 2012. I started having what seemed to be blockages but they could never catch anything on the CT scan. They would give me pain medicine and send me home a few hours later. Finally about two years ago they saw a blockage on the scan. I met with a surgeon and they said that it was probably due to adhesions that needed to be removed but I was afraid to have another surgery so I put it off. I was only going to the ER about twice a year and I figured that was better than having another surgery and possibly doing damage to my pouch. Long story short it because emergent this past January and I had to have surgery to remove the adhesions. I'm 12 weeks out and finally starting to feel like myself again. I just wanted to reach out because I know how frustrating it can be when you know something's wrong but they can't pin point it. My dad always told me that I know my body best and that is so true for all of us. I hope that you can get some answers and come to the decision that's best for you.

-Jill

Thanks for your post Jill! It's been like chasing a ghost, I know that something is not right but we can never seen anything on CT. It has been so frustrating, because most of the time I feel great. I am active and have little ones. Ugh! Anyway thanks again, and Happy Healing!! I am crossing my fingers and toes for us both

 

~Lindsey

I completely understand. Your story mirrors mine exactly. One thing to think about- my recovery from this second surgery has been rough. My doctor thinks if I had gone into it healthy, rather than emergently, things would have been smoother. Looking back I should have just done it a year ago when they first confirmed in on the ct scan. Just a thought...

I'm sorry you are dealing with that!  I am worried I will be in the same boat some day, but so far I'm ok.  I can tell you that I definitely also feel slowdowns, and sometimes pain, at my anastomosis site.   I'm a little over a year post op,  and my diet has been pretty restricted so far, but when I venture out , I just keep the volumes down.  Eating more than usual always causes a problem, and I feel it (and hear it) at the anastomosis site.   The better I've reacted to a wider variety of food, the more I've been trying to return to larger meals.   You say that it's not diet related, but have you increased your food intake?    

Over the years, that has happened  to me,at the old stoma site. X rays at the ER could never find the problem. One night quite by accident I was about to go to the ER, but instead,lay down on my left side, kind of in the fetal position. I fell asleep,and 2 hours later awoke to no pain. My wife said she heard a loud gurgle,the blockage clearing I presume. The next time I had a blockage,I tried the same thing,and several gurgles, over half an hour,the blockage cleared. 

  

Thanks for the replies, after speaking with both my surgeon and my local GI doc, they both seem to think that a small open surgery, at my stoma site, will help prevent to these "so called blockages" and is a fairly easy fix.  Even though through out this episodes we have never gotten a good image, all my symptoms are classic for blockages. I am starting to think that they may, no more than me, so I scheduled surgery in June. I am dreading it but hopeful. I have been so happy with my pouch (as I said in my first post) so I am hoping that this will be a fix. I will keep you posted!

Lindsey

Lindsey,

I think that's a wise decision.  Make sure you ask lots and lots of questions.  When I went into it, I was under the impression it would be a quick fix as well.  My recovery has been complicated by C-Diff and SIBO so I think my case is probably different from yours but in talking with a lot of different professionals and people on here after my surgery I have realized that surgery is not an easy fix.  More surgery can lead to more adhesions which can cause more blockages.  It's kind of a vicious cycle.  Surgery might be and probably is your best option right now, but I don't want you to end up blind-sided like I was.  Knowledge is power!  Just be aware before you go into it.

Hello Lindsey, 

I am also scheduled for surgery in June.  I've had my jpouch since 1989...it was 26 years ago last week!  I just started to have complications 6 years ago.  Twice in the local ER hospital for bowel blockage...I know what you mean about ER's.  The group that took over my care for 2 days didn't have a clue what I had (jpouch).  One of the nurses kept lifting up my gown asking where is my appliance!  Frustrating.  But I'm back now at Cleveland Clinic and with the problems I've been having we have decided to go into surgery to remove those nasty adhesions, (even though this will create more).  I've been told that they do "new" things now with adhesion prevention so maybe we will get the pain relief we need.  Keep us posted.  I too am scared.  It took 6 surgeries to get my J pouch right and then I had 4 surgeries after that for other complications so I know my body just doesn't accept this kind of trauma, it kind of shuts down, so to speak.  But I'm not sure of what else to do and I have to put my trust into the docs at the clinic.  They were there for me in 1989 when I didn't think I was going to survive and they brought me back to a healthy state, so I have to have faith that they will again.  Take Care and God Bless to you and your family if you go through this in June.

Patti

Thanks so much Patti for the encouragement! Good luck on your surgery as well. Here's to health, What a crazy ride

 

Lindsey