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Hi Guys,

I haven't logged on in a loooong time. I came back to sign in and the page was different--that's how long it's been! So anyway I get pouchitis 2-4 times a year since 2011 and my quality of life has just slowly deteriorated. In 2012 I developed a horrible pain on my lower right quadrant--I explained the type of pain and my doctor said it sounded like a bad adhesion. I have scar tissue from polycystic ovaries as well and their theory is that I'm stuck together. I'm not totally blameless for the lack of recovery, I always bailed on physical therapy and I didn't eat well or exercise enough. But now, I'm still stuck in survival mode. I feel as if I stopped growing or maturing after my surgery. It's been over six years since my first surgery, five since I was fully connected, and I've been in survival mode the whole time. I haven't been able to keep a job for more than eight months since 2010 because I'm nauseated and in pain everyday.

It took three years of complaining and tests to confirm I don't have Crohn's or a fistula for the doctor to bring up lysis of adhesions. Initially they said they didn't like to do it because it can cause more scar tissue. I did not have the laproscopic colectomy, I was cut open, and the surgeon said there might be so much scar tissue that he'd have to open me up, and in that case that might cause scar tissue. So I'm really torn. The surgeon said 90% of his patients feel better, 5% about the same and 5% can make it worse. I'm back in physical therapy and  want to get my life back. Five years of sitting down and lying down and all over inactivity has made me very weak. I just want to be done with college and move on like a real adult, but I can barely make it around campus (huge urban campus with scratchy toilet paper). I'm 27 now but I'm still 22 in my head. I'm surviving, I'm not living. Any experience or words of wisdom? I appreciate it. Thanks

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I too had successful adhesion lysis about 8 years ago. No serious issues since. My lysis was done laproscopically, which helps, but doesn't eliminate the possibility of additional adhesions. Manipulating anything inside your body can trigger the creation of adhesions, and that is why surgeons are remiss to do this surgery. But based on your description of your life, I would say you should go for it. - Steve

I had adhesion lysis four weeks ago when I also had my takedown surgery. I had a kinked bowel and couldn't eat solids for the five weeks between my colectomy and takedown. So far, everything seems to be cleared up--I can eat again! My surgeon was able to do it laparoscopically because he knew where it was and it wasn't attached too strongly to my pelvis. 

 

Good luck with your decision.

I had my surgery on June 5th to remove adhesions.  I was having so many problems with my J pouch and health so I went for the surgery.  When Dr. went in laproscopic she couldn't do it, so opened me up the old fashioned way, and discovered a 6# football size shape ovarian cyst!!!, hernia, and alot of adhesions ( I had 6 abdominal surgeries prior) so with all that being said, I'm glad I did the surgery.  Recovery  however for me this time around has been rough.  I went into surgery very weak and tired so it will take more time to recoup.  Plus I'm not as young as I was when I had other surgeries.  I wish you well and hope you can find something that will make you better.  J pouchers go through alot on a daily basis that many just don't understand, but be strong.  

 

Hi AllyKat...I'm coming along.  Better than I thought for now still having some kind of strange pain on right top side of incision and Dr. "thinks" it may be a blocked nerve.  It will be 8 weeks on the 5th of Aug.  My exhaustion levels are overwhelming at times.  No one really gets it so I don't say too much about it, but there are days that I think I should stay in bed but I don't cause I just won't give in to this crazy illness.  Going not surgery not well for the past 3 years didn't help either, but I am glad the worse appears to be over.  I know it can be worse too...when they found the cyst and removed it I was so scared until the biopsy came back not cancer.  I just read last week of one of our fellow j pouchers whose biopsy came back cancer and it broke my heart...I haven't heard anymore though how he/she are doing??? I am 54 years old and have been struggling with many illnesses so I am just happy when a good day presents itself and I feel like I've achieved another day.  I am a woman too so at times I think what we go through at this age can also fatigue us.  Are you a woman?  I know my dr. want to check me now on a yearly basis for the ovarian cysts don't come back and "squash" my pouch and I am due to have a pouchscopy done in October by Dr. Shen at CCF.  I wish all of you my best for your health.  

Patti

Hi Patti,

Nice to hear that it is all over (for now and forever hopefully)...

Yes, us pouchers hide a lot of crap in our abdomens...it is kind of like cracker jack...you never know what you are going to get and then you always have a new surprise inside!

I had my pouch picked up (kpouch slid off of the wall a few years back and was crushing some rather unhappy organs)..while in there he snipped a few new adhesions, fixed another rip in the abdominal wall and dug out a loop of bowel that had elected residence in my abdominal wall...all in all the 1 hr surgery took 3.5...

I was amazed at how much pain I had post op especially at the site where the scopes went in and the muscle where the loop of bowel was dug out (both hurt for months and took my breath away a few times)...

Yes, we get more tired as the years go by...being women menopause plays a huge role in the healing proceess but so does diet and exercise and the condition that we are in going into it.

My surgeon reminded me that just because it was laporoscopy does not mean that what was inside was any less traumatic...it is just the skin/muscle that suffers less...

I gave myself 2 weeks to recuperate and be back at work full time...way too short for the type of surgery but I had no choice. Still a bit exhausted even now and do not expect to get my mojo back any time soon.

Exercise helps a lot and so does diet...I am sugar binging so that doesn't help...I use sugar as a sleeping aide of sorts...I eat it and fall asleep!

Do not forget to hydrate especially now that we are in full summer.

Take care girls...be strong

Sharon

Patti thank you for your reply.

 

Im 5 weeks behind you. I am so totally pushing myself. I too am so sick of this. At least your cancer free and still have your pouch. Also, I went into this surgery not well too. I can't take sitting around any more but then the fatigue takes over. I guess at 2.5 weeks this is still normal?

 

No one understands. My husband tells me he is tired and. I Try and explain its not the same tiredness. 

Susan

 

 

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