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Been doing so good. I had some weird episodes over the past couple of years that felt like my pouch would twist and cramp like a charlie horse just INSANELY painful. Well it happened a couple times then would stop after 15 minutes. Nobody could figure out why and thought maybe gas. 

 

Fast forward to two weeks ago. I got one in my lower left side of my bowel so not in my pouch. It was the worst ever! Felt like my bowel had an alien twist it and it popped. It lasted about an hour, no idea what labor feels or sounds like but I would think this was worse. By the time my ride to the ER go to me it mellowed out. days later I had acute pain in the super low part of my abdomen. I thought maybe it could be a hernia. Well nobody is certain what is going on, still feels like it wants to happen and I hold my left side tight when I go to the bathroom with a lot of anxiety.

 

Got a CT done and my lymph nodes have nodules in my mesentery  so I am going for a PET scan and biopsies. They think it is desmoids but either way it is not good. My fear is I would lose my pouch, but guess I can't jump to the worst case scenario just yet. My GI isn't sure it is cancer since my blood work is good across the board but is still thinking it looks bad. My Oncologist didn't tell me it was in my mesentery. Read through this interesting article 

 

I honestly rather die than live with an ostomy bag so I hope this thing can not be an issue and mess up my pouch! 

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Vanessa, I’m so sorry to hear of your latest complications and can relate to your concerns about desmoid tumors since I have FAP and desmoids were found when I had my original j pouch surgery.  High grade dysplasia made removal of the j pouch necessary 30 years later and Dr. Rehnke did my BCIR surgery and mentioned nothing about desmoid complications observed during surgery.  Hopefully, the PET scan comes out negative for cancer.  I do not know where you are having your medical workup done, but I suggest that you contact Dr. Rehnke for his input in this matter.  My thoughts for a positive outcome are with you.

Bill

Sorry about this development, Vanessa. Desmoids sure would explain your symptoms. Hopefully there is no pouch involvement, but one step at a time. My understanding of desmoids is that you want to avoid surgery if possible, because surgery can stimulate new desmoid growth. The good news is that desmoids have a low cancer potential.

http://www.hindawi.com/journals/sarcoma/2012/726537/

 

Fingers crossed for you!

 

Jan

 

Last edited by Jan Dollar

So sorry Vanessa,

Have they considered the fact that it may be none of the above but adhesions? 

You have had a whole lot of surgery in the poor little abdomen of yours and it would not be surprising if you had your share of them.

They can give you pouch-twisty feelings, migroating pains, sudo-blockages and a whole lot of other nasty pains and none of it shows up on scans, x-rays etc...

I understand how frightening it is to feel like the world is collapsing beneath you with the nightmare that this new problem but please don't panic (yet)...

Please keep us posted

Sharon

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