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4 years out from the j-pouch procedure, living happily ever after. I thought.

Last CT scan showed a lesion on the pouch. PET showed no activity. Phew. Pouchoscopy followed. Found polyps and one large lesion on the upper part of the pouch, potentially inside and outside, of course on the underside where they can't get to laparascopically with the pelvis in the way. Biopsies taken, MRI ordered.

MRI results:
IMPRESSION:
1. Two complex, multiloculated lesions closely associated with the 
J-pouch anastomosis and surgical scar. These correspond to non-FDG avid 
foci on prior PET/CT. Appearance is most concerning for implantation of 
indolent, mucinous tumor. Correlation with histology is recommended. 
Chronic postoperative collections are also considered in the 
differential. Fluid/tissue sampling should be considered.

Biopsies come back negative but possibly precancerous adenoma structures visible. Surgeon recommends to take the pouch out and leave me with a perm ileo as "you seem to grow these polyps out of nowhere". So I asked him what the chances were they would come back even without a pouch but with the perm ileo as that is the same tissue. He didn't have the answer. I had been tested neg. for FAP and Lynch a while back.

So here is the 64.000$ question. What to do. After my hesitance to the pouch removal, he suggested to try to scrape the mass out from the inside with another scope and hope to get as much as he can. Then keep MRI'ing the outside of the pouch on a 3 month basis to 'see' if it grows outside.  And if needed keep scoping... (Drill baby Drill !!!)

To throw some more drama into the equation... I have to make a decision -literally today- whether I stay with my current employer where I have a ridiculously stressful 24/7 on call job but that employer stood by me 6 years ago during my cancer. Or move to a new employer that gave me a job offer for a non-on-call job that will reduce my stress and anxiety by 80% in the first week and pay more but that I don't know what the employer would do if I have another "C" scare. Health insurance is covered by both. 

What to do ??? Sorry to vent...

Original Post

It certainly is rough to have two major issues arising at the same time.  The last thing you need is to have the rug pulled out from under you job wise when faced with a significant medical issue.  That happened to me, and getting back on my feet was rough.  At least with your present employer, there is a history of tolerance relative to your medical history.  This tolerance may not be present with the prospective employer.  Having been in management for almost all of my career, I know what can happen and how it is done.  I am hesitant to make any specific recommendations for your situation.

Medical wise, I would definitely get a second opinion since your surgeon has been unable to advise you about possible occurrence of lesions in the small intestine if you were to get an ileostomy.  Have you been tested for Crohns?  I would want to keep my j pouch if at all possible, but that will undoubtedly require frequent scope and other exams.  I have FAP, and regular scope exams have been a necessary part of my life.  If it is determined that your j pouch must be removed, there are two surgical options that do not require having an external bag: the K pouch and the BCIR.  There is a lot of information for both procedures on the internet.  Please feel free to send me a PM with any questions you have.

Bill

Thank you for the reply Bill. While you are right about the history with the current employer, that was 6 years ago and the company culture has changed dramatically - and not for the better. As much as I agree with you, I also have to look at the toxic environment that I am in and how it runs me into the ground healthwise. I can't continue being the last one on call for an international company's IT business without any backup or support. 24/7 without a break - ever. Even vacations are painful. 
That said, I appreciate your opinion for sure ! I am thinking about the second opinion, but I am already in very good Cleveland Clinic hands and this surgeon is one of the top guys in this field. So I do trust him when he tells me that I am an odd case with these type of growths that he hadn't seen before. I was tested for Crohns but it was determined a long time ago that it was UC that I dealt with before my Cancer. 

I think an end ileo is simple. They pull a bit of small intestine through the abdominal wall.  I'd ask if they had ever had a case of leisions on or under a permanent ileo.  It sounds like your pouch is failing. I know how upsetting that news is as I had my j-pouch removed a 16 months ago.  But it was a great decision. My quality of life is much better without my sick j-pouch. 

Sorry to hear all the trouble u face.  It's so frustrating to k what to do.  I k I pray a lot and ask GOD to direct me.  I also k that stress is a big part of keeping this disease under control.  I k because I worked in the medical field under much pressure managing a private practice.  I could no longer  work due t stress; it will make me sick even to the point of vomiting.  Leading a stress free life is hardly possible but u need to put yourself in a better environment for your health sake.  

I see now that after what I have been through that stress is definitely a factor.  Because now that I have an end ileo I feel no stress in my gut at all. None.  I don't know where it goes now. But my gut area is always relaxed now. No tension.  For the first time for as far back as I can remember (decades) I feel nothing but relaxed there. 

Before. Even just going to work I felt stress there. 

Good luck. 

Richard. 

Thank you for your support Guys !
I have made my decision and have resigned my current position to start working 'normal' hours and 'normal' stress levels without having to permanently have to worry about it IT systems on 9 cruiseships and 7 global offices in all possible timezones during all days of the year. Being the last one to call if something brakes had put me into a state where I always expected that call to happen. Always. No matter if the phone actually rung or not, the anxiety was always there. No more. Away from global support, away from production responsibility. I had asked for help for the last 3 years and it fell on deaf ears. Now the bosses are freaking out. Oh well.  

Now in a few months, lets see how my pouch is reacting to this change....

All the best of health to all y'all from South Florida,

 Toddi

I know that it has been a while since you posted this, but have you been tested for the MUTYH mutation? I was diagnosed after a colonoscopy for rectal bleeding. I had hundreds of polyps and an adenocarcinoma. Genetic testing for this showed lifetime risk of colorectal cancer was 80%. It is similar to FAP in that you can produce 100s of polyps. I actually had 2 of the mutations and was diagnosed with rectal cancer last year. It increases your risk for small bowel and gastric cancers as well and surveillance is required with an EGD periodically. Could his be contributing to your polyp formation? Prayers your way! 

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