hi saff, I have a stricture mid pouch and a less onerous one above pouch entry. I do not experience pain unless I am presumably beginning to obstruct. something we try to stay ahead of by having quarterly balloon dilations. I have been doing this for a few years now and that along with medication Humira weekly and small dose of methotrexate has largely kept me out of the ER and the obstruction path. when I had my cholesystectomy (gallbladder removed) my surgeon spent twice the amount of time during lapro surgery because of the multiplicity of adhesions. that said adhesions otherwise haven't clearly been implicated in my pain or other problems.

if you look on Maddie's first post about myofascial release you will see my friend Jilly who has had a long history of adhesion issues including pain. perhaps her experience might shed some light on yours? maybe pm her.

I am curious as to why if your pouch has been diverted for 5 years, why you still have it? are you hoping to reconnect it?

I still have a narrow anal canal due to my stricture. My surgeon did a pouch scope 2 months after I was diverted like you are 4.5 months ago. I find that the normal mucus sluffing requires a little straining to get thru at times. I am assuming your surgeon has done a pouch scope recently.  IMO you should have one done before deciding on surgery. If it is just to narrow couldn't he dilate it under anesthesia ? 

DEWYJ,

SAFF and I  had surgeries to divert from using our j-pouches to permanent ileostomies and leaving the j-pouches intact.  In my case I wasn't up to having the big surgery to have it removed. My surgeon suggested removing it then but said it's a big surgery and recuperating would take longer. Hopefully I will never need it excised. If I do need to I will. I won't be trying to use it again.

HI Dewyj and Te Marie, sorry I didn't respond earlier - I've been away but thanks for your responses.

Yes DEWJY it is a long time to have diverted pouch, I'm really just postponing the surgery to have it removed. I had hoped I wouldn't need to do it, but my surgeon thinks it may be better to take it out. He did release the stricture recently when he did a scope (which I think involves cutting it). I am just trying to understand what could be causing the ongoingy pain. But its interesting to know you haven't had pain with yours. Its a possibility the pain may not be related to my pouch. I wish I knew!

SAFF and all,

I am going to contact my surgeon to have my j-pouch removed.  She suggested it before the diversion surgery but I was hoping to avoid that.  I have had 5-6 rounds of antibiotics for UTI's since my surgery 8/31.  I kept attributing my abdominal pain to them and not my j-pouch.  Now I know my j-pouch is causing the pain as the UTI appears to be finally gone and I'm still in pain.  It's like I still am using my j-pouch, except I don't have to give myself enemas. 

I have been taking narcotic pain medication for over 5 years. It just takes the edge off of the pain. Probably because my body is so use to taking it.  I refuse to up the dosage so am in pain all the time.  When it gets too bad I take 800 mg of ibuprofen.  Just one dose and probably just twice a month.  If I take it too often I will get use to it plus it's not good for autoimmune diseases if we take too many NSAIDs.  

I was delighted to cancel 4 prescriptions when I was diverted to a permanent ileostomy.  I'm ready to have it removed.  The fluid coming through it, when cramping, has changed to a chocolate milk like color and consistency.  In the beginning it was a whitish thicker output.  It just wasn't for me. I need to get rid of this pain.  It wears me down, wakes me up, prevents me from going to sleep in the first place.  I have sleeping pills but don't like taking them as I am on so many other medications. As my husband says, "I own Walgreens"  

My skin isn't a fan of my ileostomy.  It is much better but my Ostomy nurse has me changing the wafer every other day.  I have tried leaving it on longer and then have to deal with the raw skin again.  I've tried many brands and styles and have one that is working pretty well.

Hey Te Marie, I think I am not far behind you. But I can see from your new post that you have scheduled a date for the surgery so you are a step ahead. After so much surgery already, its not easy electing for more is it! I hope it goes as well as possible for you and I will follow your post to hear how you are going.