Hello Everyone,
MALE 55, J-Pouch 85' Dr John Pemberton (Retired) Mayo Clinic
I am praying that I can get some support because I feel like I'm going to have a breakdown. I am a patient of Dr Shen now at Columbia and previously at C.Clinic.
Saw Dr Shen about 4 years ago and diagnosed with mild Afferent Limb Syndrome. (Told to monitor it with him).
Jan 24' Extreme gas and bloating and extreme pain when passing stool. So bad I thought I was obstructed. Defography as per radiologist at Columbia is normal. Shen states it is not normal and I am not emptying properly. Recommends pelvic floor excersies/ biofeedback and possible banding procedure. I am having severe pain when passing stool. I describe it as 'passing glass' and I am MISERABLE. Typically courses of Flagyl or low dose Tinizadole relieve this pain and discomfort both inside and out and keep in manageable but now that's not happening.
Feb 24' SHEN POUCHOSCOPY RESULTS: - Angulaton at the inlet, "At the pouch outlet, there is a prolapse posterior". Pouch mucosa was normal. Tells me my anus is very tight. So the "floppy pouch' angulation is a bit worse than 4 years ago but not horrible. The prolapse is new and should be addressed. We decide to fix the 'structural portion" first through banding and then down the line do the biofeedback/ pelvic floor therapy.
Mid May 24" Dr Shen installs 14 of the 'newest' clips / bands. Advised to do biofeedback in Edgewater/ Fort Lee NJ in the future after healing to help the procedure. I am now 2 months post procedure and I am still in unbearable pain when trying to poop. Nurse tells me she suspects a 'fissure' 2 weeks ago and recommends that I have an anal exam. I go to my local GI in Morristown NJ (he is excellent). NP feels around with a glove / rectal exam and I see stars. Tells me that I most likely have a fissure and to use psyllium and insert Calmoseptine inside the anus and pouch. Dr Shens nurse sends in a compounded Rx called Diltiazem 2% ointment and I am to insert a pea sized amount 3x daily. I start using the ointment despite it being very painful and I actually feel one of the 'pins' from the banding procedure in my anus pinching me and the pain is excruciating! I actually feel it move from the pouch to my anus and then back again and my anus is is spasm - clearly from the pain. I email Dr Shen and his nurse and inform them what's happening and tell them I can't handle the pain begging them and asking for a follow up pouchoscopy. Shen responds and says clips can be "passed." I tell them I know my body and that I have only passed about 3 clips since the procedure and the ones I passed were within the first month. I ask if this one could be stuck and need to be removed though pouchoscopy?? I get no response but to be told to use UCERIS FOAM. Last week my ass was on such FIRE that I TOLD my local GI to prescribe CIPRO to see if I could get some relief. Local GI said they would scope me or reach out to Shen. I am still waiting to hear back. I'm now 4 days into a week of CIPRO and the external 'burn" is definitely improved but still not acceptable. Still having the same 'passing glass' pain and difficulty pooping. Going in small amounts and having to wipe out the stool because it oozes out. I don't get that feeling of passing gas like I used to with my noisy pouch and pooping. Tried pepto bismol chews, Gas-x ,- everything you could think of (mostly on my own) with marginal improvement. Every barrier ointment imaginable! No wiping - just dabbing. Hypoallergenic baby wipes to dab with. It's a literal 'SHIT SHOW'!! 
(I also do probiotics RENEW LIFE and RISAQUAD). Both have helped over the years for sure.
My experience with Columbia has been a nightmare. Neither Dr. Shen or his staff even informed me post banding procedure that I could poop out these 'pins' and that I could have bloody stools afterwards etc. Even my General Practitioner was on a Zoom call with him and never told of any expectations post procedurally. I suffered through the post procedure process with HUGE anxiety and it was SO UNNECESSARY. And to this day, it's very unclear. I'm told 'you call poop out all 14 pins or you can poop none". It's SO EVASIVE. Response time is UNACCEPTABLE. I never had this with C.Clinic or Mayo Clinic. I would put a call into Dr. Pemberton in any type of distress and get a call back in 10 minutes.
I am BEYOND depressed and don't know where to turn to. Dr. Pemberton is retired and not reachable and I am in bed daily sleeping. Can't cope. Any advice would be so much appreciated. I feel like I'm dying a slow torturous death. I am sick since I'm 8 years old and I'm tough but this is beyond challenging.
Sincerely,
Mike
it’s been very rough. I hope that Jan responds to me on here with some advice too 🤞 🙏