Just got finished with the Bo Shen Two Day Special at the Cleveland clinic. I have had difficulty with my pouch FOR YEARS (probably from the get go) and my follow up care was crap (no pun intended). I've had spotty insurance coverage on and off but I also believed what I was going through was as good as a pouch gets considering I'd read this board and would thank my lucky stars that I didn't have a lot of the difficulties that people here suffer.
Anyway, I had some anal skin tags surgically removed in 2013 and that's when everything went downhill. Constant bloating, nausea, constipation, pouch always feeling half full and difficulty emptying. I went from having the runs 20 or more times a day to being clogged. I never thought I'd miss having diarrhea! To make a long, miserable story short, I went to two different gastros in two years and both said my pouch looked just fine. I switched to the gold standard of insurance this year and of course I had access to all sorts of top doctors which led me to Dr Shen.
Before I disclose the diagnosis, let me say there were things I learned during my consult with Dr Shen that I wish I had known years ago (I've had my pouch since '99 and surgery was done by Dr Thomas Stahl of Washington Hospital Center in DC). One, I wasn't supposed to take Advil or aspirin, and two, I wasn't supposed to lift more than 20 lbs. Well, I used to be a bodybuilder so to hear this piece of info was jarring - and depressing considering I wanted to lift weights again and felt like an invalid after hearing that bit of news. Also, here's something surprising - he claims that probiotics do not help. I am not sure if he meant my current condition, however, he had yet to perform any tests so I assume he meant in general.
The diagnosis was normal pouch, afferent limb and cuff mucosa. 4 cm long cuff. A circumferential distal pouch prolapse almost blocking the pouch outlet and another anterior fold prolapse above.
Now, can anyone put this in layman's terms? Dr Shen put me under for the scope and when I awoke, he spoke a few words to my boyfriend and said I needed to take care of this ASAP but that's pretty much all he said because he was in a rush and tied up with other patients. I mean, I have no idea what this means, only the implications, which are either laparoscopic surgery or a whole new pouch with takedown again.
Dr Shen referred me to Dr Ashburn at the Cleveland Clinic. Does anyone have any experience or intel on her? I also scheduled an appointment with a Dr. Eric Haas of Houston who does robotic laparoscopic surgery. So here are my questions.
- Opinions on either Dr Ashburn and/or Dr Haas.
- Is there a huge difference or what is the degree of difference between robotic and non robotic assisted laparoscopic surgery?
- What is the downtime for either surgery, laparoscopic (robotic and non robotic) and new pouch? I cannot recall my experience with the current pouch and no one has given me ANY information on what to expect. I am so in the dark with the lack of info!
A few more words...I am so grateful that I went to Dr Shen. He truly is the J Pouch Jesus. I just knew I wasn't crazy and imagining all the symptoms I had no matter what previous doctors had said! And I would love to know why the two previous gastros did not see the prolapses.
My advice? Never give up no matter what anyone says because you know your body the best!
Thanks for listening!