I'm bumping my previous post up again since there were no replies and I have some new information.  MRI results quote:  "there is a posterior rectal wall fistula suggested extending to a presacral/posterior rectal fluid collection/abscess. This appears chronic or recurrent, seen on the prior MRI examination images from 2012."

My GI and the surgeon who did my j-pouch have suggested that I see Dr's Shen/Remzi at CC. (a 6 hour drive for me).  I find this frustrating since my doctor is giving me little information about what the problem is and why it's important that I go to CC to deal with it. (I suspect they don't like to give free information to me through their online service).  At this point my pouch seems to be functioning fairly well and I'm not sure what to do about this. I suspect my doctors are concerned about liability if they don't refer me to CC. 

Any advice?

It doesn't sound to me like liability concern, nor does it sound like withholding knowledge. A referral was suggested because the finding is outside their areas of expertise, and the right folks are a (long) car ride away. It's reasonable to ask them if it's okay to put it off as long as your pouch is functioning well. Docs do vary regarding how much of their workday they are willing to spend on email, phone calls, or other electronic communications, and that is partly a financial decision. For example, Kaiser docs get paid for email time, but most others don't. 

Good luck! I hope this fistula and abscess/collection never give you significant trouble. If it were my pouch, though, I'd make an appointment with Shen. Dr. Remzi is reportedly not making appointments at this time.

Thanks Scott, I'm frustrated since I'm getting little information about what the problem actually is (other than what I can discern from the pouch endoscopy and MRI results). I also don't know what the risks are though I've apparently had the problem for a while since it showed up in a previous MRI.

It was a surprise to me when my doctor said that she had already talked with Dr. Shen and that she is suggesting that I see him. Do you know if it's possible to do an online or phone consult? I'm not thrilled about driving to Cleveland for a consult.

Richard

Shen probably does remote consultations- others here may know for sure, or just call his office. If it matters, I wish Shen were only 6 hours from me. I'd schedule an early Monday appointment and stay in a Motel Sunday night. We've heard from many Shen patients here, and very rarely has anyone regretted the travel (often by air).

It's not the 6 hour drive that's the problem but not understanding what the problem is and how serious it is.

Cleveland clinic does do remote second opinions. Essentially, they review your medical records and make recommendations based on that. Insurance probably will not cover it and would cost $500-800. In the long run, you'd need to see him in person.

This is better described as a pouch sinus to a presacral collection/abscess. I had a presacral abscess and it wound up sending me to the hospital for 12 days with a fever of 105. It was a dicey fix with a drain inserted through my butt cheek for a month, and I didn't have a sinus. If I were you, I'd get this sorted out before things escalate.

It is unclear to me why your doc will not explain things for you, particularly what Dr. Shen said.

Jan

Thank-you Jan, that helps.  I had an infected abscess after my first surgery. I was wearing a portable unit getting antibiotics for 8 weeks. I wonder if this is a remnant of that. It showed up on an MRI that I had several years ago. I am trying to get more info from my doc.

Richard

It probably is related to that incident.

Jan