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Hey Gang,

I just made my first ever YouTube clip about life with UC, I even show my shiny new stoma, tell me if you think anyone would actually listen to it?

Be Kind, I know I'm no model, and I tend to mumble, I only hope I get the message accross, thanks,

Eric Eeker

PS - if you honestly like it, pass it around, my goal is to get as many people as I can to watch it, maybe, if I can help even just one, then it's worth it Big Grin
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Eric!!! It's been way too long, honey. It's great to see AND hear you. You look fantastic. I'm so sorry your j-pouch didn't work out and that you've been through so much more pain and suffering. I have everything crossed that this K pouch is a success. I absolutely love that you haven't lost your amazing sense of humor and that your attitude is still terrific.

I think the video is great! It's certainly a true testament to the kind, sweet, always-thinking-about-others, type of guy you are. It's informative and will help many.

I look forward to catching up, bud.

Huge hugs!
Not at all, I'm actually thrilled with my K pouch, the agony I had with my j pouch is completely gone. It's weird at first pooping through a catheter, but you get use to it, but so far, despite the surgical post operative pain, it's been worth it. I won't lie, the surgery, at least for me, was pretty rough, but after the first few weeks I was already noticing a huge difference. For the first time in 23 years I can sleep through the night without waking up to poop, trust me, it's worth it!

Eric Big Grin
It's very similar to the usual sensations, I can feel a gentle pressure that lets me know its time to empty it. As a rule of thumb, I try to empty every 4-5 hours. If I let the pressure build up too much, it's difficult to open the valve as the gas puts pressure on it. The valve is merely a flap of skin on the inside of the pouch, it's prevents any stool from leaking out, but can be really stubborn if too much pressure builds up.
Hi Eric,
I took a look at your video & envy you. Your stoma is so small & tiny, just like photos I've seen of BCIR stomas. I don't understand why my stoma is about an inch wide & sticks out about half an inch - looks just like the stoma I had when I had my ileostomy. We both had the same surgeon but our stomas look entirely different. - Dixie

I'm curious about this too. I thought it was a difference of the surgeon's technique but if you had the same surgeon then I'm not sure. I also originally thought they were all tiny and different looking than ileostomy stomas. I'm looking into the k-pouch and my surgeon told me it's flush so you can't use a bag if the valve leaks. Some stomas look like you could though, worse case scenario.
Dixie honey, I've heard this before. I asked Dr Cohen why, according to him, there are several factors. Some people have larger bowels, some have major adhesions, we all have different musculature, we all react differently to surgery, body size can be an issue too. I guess there's a ton a factors. Dr Cohen told me my small bowel is exceptionally narrow (he claims often, GI patients, as they grow internally, can be drastically effected by flaring as a child, and I flared a lot). Apparently, I also had a ton of adhesions both inside and outside at the end of my bowel where it once attached to my j pouch, probably from the multiple surgeries and the constant pouchitis. He actually removed about another foot of small bowel because of it. If there's one thing I've learned, when it comes to GI issues, we are all so very different, identical outcomes seem rare. Look at us, 99% of all j pouchers live their entire life problem free, leaving only the 1% of us to endure chronic pouchitis. Better still, according the the Harvard Medical School stats, only a mere 1% of that 1% need to have the j pouch removed, you and I are just that special! I pray you're feeling good honey,

Big hugs,
Eric Big Grin
Thanks, Eric! I'm feeling just fine - glad that my Kock pouch is working again for me. So glad to hear that everything is going well for you as well, after your rocky start. I feel fortunate to have been able to have had the Kock pouch surgery as an alternative to having an ileostomy. You've had your Kock pouch for a much shorter period of time than I have & have provided me with information that has done a lot to make me feel less anxious about some of the concerns I have had lately, i.e. a stoma that moves around occasionally. Thank-you!!
I have had 6 different stomas (5 from Dr C and one from a French surgeon) and none looked identical...mine is now lower on my abdomen(in the pubic hair) and sticks out a tiny bit, kind of like sticking its tounge out at is wider than the original ones but cute...I had 2 that sunk deep into the canal, one that sunk half way and a couple that kept closing up over 2 are exactly don't worry!
Thanks, Sharon for letting me know this. I just kind of wondered why my stoma would look different. Now I completely feel at ease & understand completely. Eric, I meant to say a valve, not stoma, that moves around occasionally. I'm so glad I discovered this forum site - it's so good to get input from others who are going through the same thing & feelings involved. Thanks, everyone!
My 1st, 2nd and 3rd k pouch valves were stationary and never moved around...28yrs worth of valves...since 2007 my newest valve is mobile and can rotate in any direction so I go slowly when intubating and allow the valve to guide the tube and not the other way around...otherwise I 'hit a wall' so to speak and it hurts...(kind of like pushing the tube into the side of the valve...not good for the valve at all!!!)....
Dr C has seen it and was very surprised the first time that he checked it out...had never seen it happen before but there you have is more common than we does Not cause any problems other than the obvious of finding the right direction to intubate into...I find that if I intubate a bit more often when I know that I am going to be full and avoid overfullness then it is not a problem at all.
So don't worry...Even the abnormal is normal with us!

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