First, I am so sorry that this procedure has made things worse, even if it is temporary. Knowing that you are part of a minority with a problematic pouch does not help at all. In fact, it can make you feel even worse for drawing the "short straw" in success lottery.

Sometimes even a simple endoscopy can cause a flare, and this was not simple. So what do you do? You have gone to the best GI out there in regard to pouchitis. I don't know what Dr. Shen's success rate is with the needle-knife procedure, but it can be a good option before opting for major surgery. Sometimes it takes multiple procedures to open the sinus fully. A few patients here wound up with pouch redo surgery eventually.

In regard to the pain you felt during the procedure, it was all due to the air instilled to improve visualization. There are no pain receptors in the intestines, so you can cut and take biopsies painlessly. But, there are stretch receptors that send pain signals to the brain in response to the air. There are pain receptors in the anal canal, and if your sinus was near the anal verge, that certainly could trigger pain during the procedure and afterwards. This should improve. If not, get a prescription from your primary doc or Dr. Shen.

Ischemia is where there is a reduced blood supply to the tissues. It can be tricky and persistent. Dr. Shen has been treating some patients with hyperbaric oxygen with some success. But, it is very time consuming. 

Hopefully, this flare turns around and things improve with your sinus.

Jan

It's ok to vent.  

That's what we are here for.  I will listen.  No good at advice.  But I know when it's not working.  It's painful.  More painful than the Dr's realize.  

Basically.  A useless word.  Basically. 

It SUCKS! 

I hope you feel and get better.  That's young to be going through this.  I cannot imagine at that age..Gotta be bad for your social life as you say.  Me.  My social life is pretty well done.  So I wear a bag.  Couldn't take what you are going through any longer.  But you being so young I would only hope it starts behaving itself. 

Richard. 

Ischemia is tough. It means the blood supply to the pouch is inadequate. Sometimes the blood supply gets stretched excessively during surgery (especially in tall men) to reach the pouch deep in the pelvis. If that's confirmed you might need to get the thing repaired. As miserable a prospect as that is, it's probably better than a poorly functioning pouch.  I hope it turns out to clear up on its own!

Scott. 

How do they determine this? Just wondering.  I'm tall and lanky and may have been part of my problem and want to ask but need to be informed before I do ask. 

Thanks. 

Richard. 

Thanks for the feedback, everybody.

Jan,
How can I explain my symptoms? Shen has reported no adverse events from N-K therapy. If they perf'ed me then I would be dead by now, so that's not it. I can see in the video that there was definitely a good bit of dissection done, but they certainly were not expecting ANYTHING like what I'm experiencing (no pain meds???). I too can't help but think that the scope/op caused a big flare up, rather than mere post-op pain.

They wanted me to start Budesonide, but I want to wait on some intestinal wound healing before I take corticosteroids. They were fine with me going on cipro flagyl, which I'm on (although also offered tindazole). Now I'm thinking that this really could be a flare, and maybe I need antibiotics AND budesonide, and that this isn't about wound healing. Your thoughts? Also, should I try to advance diet despite the pain?

Scott,

I am fairly tall and thin (my brother even more so tall). Shen said 70% of ischemia issues are with male patients. That said, if I ever have another major J-pouch surgery, it's to remove that sack of troubles. I'm not afraid of a bag.

Richard,
If I had a bag, I wouldn't be embarrassed in the least. I was proud of my temporary stoma and showed it to my friends. Some thought it was awesome, all respected me for how I dealt with it. People who said "yuck"... yeah that hurts but they aren't worth my time. If I didn't have a GF, I still wouldn't care.

My social life is much more affected by my professional success, personal happiness, and ability to engage in physical fitness and hobbies. The bag only allowed me to do those things for the short time I had one. I also hang out with religious people a lot, who judge people by their values and compassion, not their appearance.

Your posts are great for me. I know that going "back" to a stoma will never be as good as choosing one in the first place. But your posts give me hope that if I go back to the bag that it will be almost as good.

Well, your actual height is less of an issue than having a long trunk and narrow pelvis. Most males have a narrow, deep pelvis, while the female pelvis is more wide and shallow (for childbirth, obviously). This only matters if there is a problem with getting the blood supply to reach and they have to do special surgical "tricks" to add length.

From what I've read, ischemia is defined as inflammation in a sharply defined segment, as opposed to random areas. Treatment is the same, except that you are more likely to need anti-inflammatory meds and/or immune modulators, meaning that antibiotics are less successful. Of course, like anything else, no treatment is 100% successful, regardless of the diagnosis.

http://www.ncbi.nlm.nih.gov/pubmed/19998461

Here is more about ischemc pouchitis and treatment with hyperbaric oxygen.

http://gastro.oxfordjournals.o...8/gastro.gov038.full

Jan

Solomonseal.  

Your post was inspiring.  You sound very confident.  I'm not embarrassed by mine either.  All at work know I have one but they forget about it.  I work outside in the TX heat.  When it get sweat on it I lift my shirt a bit and stand in front of a fan to dry it some.  Of course I don't do it in front of everyone.  I do it off to the side.  I just don't like the wafer getting wet and then drying time after time.  Kinda makes it a little stiff.  Otherwise I have no problems with it.  

Lol.... I'm pretty anal about keeping it empty and flat.  Doesn't take much to feel it when it gets to a point.  But I am just more comfortable when it's empty.  Empty and flat.  

I wish you the best!  You will get where you want to be.  I can tell in your posts. 

Richard. 

It seems to me like the procedure initiated a flare up. Cipro/Flagyl brought me back to about where I was before the scope after a week of treatment. I am on Budesonide. Sleep is very rough and I'm not able to rest much without percocet. Things are back to "not great," and I'm back on my feet, eating, exercising, and functioning sufficiently.

Talked to multiple surgeons who give a very different perspective to Shen, including regarding pouch excision. I will speak again with Shen and two more surgeons about some of the points of difference. In any case all of them have a much more optimistic view of it, although to varying degrees.

Nobody but Shen thinks ischemia is a likely cause. The surgeons all look at it and say some combination of a possible anastamotic/septic issue and plain old chronic pouchitis. They won't rule out Crohn's but think it's unlikely (I guess that's the same as Shen).

I'm pretty much done with the Jpouch.