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aka KNKLHEAD
I was close to doing a revision of my pouch for the second time or going back to a stoma (my preference.) This forum helped me reach out to Dr. Bo Shen for an opinion. He saw that I had a sinus or leak in my pouch, recommended his needle-knife sinusotomy outpatient procedure. He acknowledge there was air/inflammation in the area between my pouch and my tailbone. For those of you who have had *really" bad tailbone pain, this could be the cause! It's not IN your butt, but really does feel between your butt and your tailbone. It amazed me that this leakage could cause so much pain!

Further proof that I had a leak, when I did the 64oz Gatorade/Myralax Monday night there was lots of new leakage and boy, was I hurting.

I had the "first" procedure yesterday and he told me it might take several procedures to resolve the issue. I was SHOCKED when I awoke from anesthesia and he told me he took care of my issue in ONE VISIT! I was floored! He also provided pictures of how he opened up the hole and opened the cavity. My butt was a bit sore this morning, but feeling pretty normal now.

If he solved my "sorry butt" problem with this one outpatient "pouchoscopy" visit I will be beside myself! I am so happy, but also nervous that my problems might not be resolved. He assured me the problem was corrected. Wonderful, wonderful news!

My surgeon reviewed this procedure before I had it done and he was almost as excited as I was and felt the sinusotomy is a very viable option.

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J jeaneMember
YEAH!!! Great news for you!!! How lucky for us we have someone willing to think outside the box to try and spare us from more surgeries.

At my pouchoscopy today, my GI mentioned his name again in the event I opt to have the needle knife procedure to open up my stricture at the anastomosis versus opting for pouch advancement surgery. He likes the idea of my going there as if the procedure failed while performing it (e.g pouch perforation), Shen and Remzi are on board
at that time to do the advancement (as long as it is possible?). Not certain on that one.

I hope this solves your issues as I know how bad that tailbone pain can be!!
J
aka KNKLHEADaka KNKLHEADMember
Thanks, all. Dr. Shen responded to my email questions:

He mentioned that it is possible the leak can reoccur, that I shouldn't be lifting heavy objects and try to not gain weight. (I'm 175 lbs). He also said my butt pain is normal and will go away. (I believe this is just from the tools he used and the "access point" through which he used them Smiler )

I'll try to update, good news or bad.
aka KNKLHEAD
aka KNKLHEADaka KNKLHEADMember
TDR16 and others who have had this NK procedure. I was under the impression that I'd feel 100% normal after the anesthesia wore off, but I have some continued butt pain a week later. It is not the same pain I had when I had a leak (OUCH!) but more like the pain I had after takedown, soreness.

As TDR16 put it, the "cavity" needs to heal ... can I assume that the "cavity" is just healing for now and the pain will slowly subside?

Thank you. TDR16, best wishes, let's hope this works for us! H
aka KNKLHEAD
T TroyMember
I still have some pain 3 days out. It is much like you describe, soreness. i have noticed that i am not passing blood anymore, but still am experiencing mucus, which is probably due to pouchitis. Shen has me on augmentin and cortifoam. He took me off entocort and tindamax right after procedure. I have my fingers crossed. I have tried everything for my condition. flagyl, cipro, humira, remicade,short fatty acid enemas and of course prednisone. No success yet
T
Last edited by Troy
J jeaneMember
Hi tdr
What is cre ? How long were your symptoms and how long fid they sppear after takedown? I had a dilation Wednesday under anesthesia and my pain and emptying issues are worse. I feel like I have the bowling ball stuck in my rectsl area. I really do need to make a decision about next steps to try and resolve the issues I am having. I may talk to my Gi about the pelvic MRI as all this anal pain is just not normal and no rectal meds even touch it. They just make things worse.

Ate you feeling any better?
J
T TroyMember
Jeane,

never had a takedown. one step done in 1999. had sporadic pouchitis every couple of years but this past spring had worst pouchitis ever. i am guessing that the sinus tract may have had something to do with it. not sure what CRE is but it was a balloon dilation that was done. i am feeling much better. still not there though. When i first saw Dr Shen last month he said there were two examinations that he would perform to see pouch. the first was a barium enema with photos. he called this the chevrolet. the second was the pelvic mri. he called this the cadillac. you have to love a dr with s sense of humor.
T
J jeaneMember
Good for you. Please keep us posted of your progress. I really hope this helps. I never had the barium...only the MRI which showed nothing but my symptoms have been pretty unbearable since day one. I have had several manual dilations with chronic cuffitus... Always pain in my back end. I have gotten used to it unfortunately but I know it's not the way it should be
J

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