Hi again. I had my removal of j pouch performed on the 16th of April with permanent ileostomy and can at last sleep through the night, and am eating for Britain! Already feeling better 3 weeks post op (walked 5 miles today!) than I have done for the last year with my J pouch, so am really glad I had the surgery.

However, I do have one question that I don't know if anyone can help me with. Before the surgery I had an abcess in the rectal area that eventually burst and drained vaginaly, but the surgeon had difficulties removing the pouch because of this (he said the whole right side of the pouch had adhered to the organs around it and it was set like concrete - yuk) , and whilst trying to unattach it, he severed a ureter. The urologist was called in to repair it and insert a shunt, which I have removed at the end of June. Thankfully, I was of course blissfully unaware of this complication due to the anaesthetic, but now I am home and walking around etc, I am getting a burning pain that is really quite bad at times. I did have a urine infection (which I put the pain down to) but that cleared up with antibiotics, and have also tried over the counter products for cystitis, but am now wondering if the pain is down to the shunt. It occurs mainly when walking around, and there was blood in my urine this morning. Anyone have any ideas? It really hurts!

I am just about to have my J-Pouch takedown operation and as such I am interested to learn why you had your J-Pouch removed. Are there any lessons I learn?

Manh thanks

I wouldn't be surprised if you are trying to pass a small kidney stone. Call your doctor. In the meantime, drink lots and lots of water.

Jan

Jan, if there is a stone, is there a chance that has been caused by the damaged ureter? I am so frustrated because if it wasn't for this, I would be feeling terrific. Still, like you say, this too will pass (I hope). Going to get a drink of water now!

Fenners, I only had my pouch for one year so some people would say I didn't give it enough time to see if it would work.

However, having suffered from UC for 17 years, then finally giving in and having a temp ileostomoy and j pouch formation, I found life with my stoma so different. I could eat anything, go anywhere, do anything anytime. I had always tried to stay fit anywhere, running, walking, training in the gym, but my quality of life with my bag improved dramatically. I was unsure whether to go ahead with the takedown, I was so happy with my life, and was on no medication for the first time in 17 years, but decided to give it a go for one year, and one year only, so as not to waste any more of my life.

After takedown, I found I just couldn't eat anything without it causing pain on the way out, was constantly going to the loo (30 times plus a day), and only very occasionally slept through the night. I just generally felt so ill - far worse than with UC. There didn't seem to be any reason for it, a scope showed my pouch was perfectly healthy, but it got to the point where I couldn't empty it without straining and straining, which in itself caused problems for me. After reading messages from others who had reverted to a permanent ileostomy, most of them said that they wished they hadn't struggled for so long before doing so, so I pushed my surgeon to give me the op. I had lost so much weight anyway that he didn't want me to become to weak to operate on.

I suppose in a way I am glad I tried it, other wise I would always have wondered, but I also didn't realise how complicated the surgery would be to remove the pouch. I just assumed it would be as easy as the takedown. I suppose I should have researched it more thoroughly. Had I done so, I honestly don't think I would have gone ahead with the takedown, and would have been happy just to keep my loop ileo.

There are plenty of people on here though that are happy with their pouch, and many more that are so happy with it they don't visit the site. I just wasn't one of the fortunate ones I guess.

Good luck with your takedown, and I really hope everything works out great for you. When do you go in for it? Let me know how you get on and feel free to email me with any questions etc anytime!

good luck - Jan

I would not think that the damaged ureter would cause a stone, since stones are formed in the kidney, which is "upstream" from the ureter. However, it could make it more difficult for small stones to pass, perhaps even with the stent.

Jan

I have heard of some people having a lot of spasms with the stent that can be painful. I wonder if your infection might be back?
Jennifer

The more I try and determine what is causing the pain, the more convinced i am it is spasms because of the stent. I have sent another msu test in though just to make sure that the infection isn't back. Today it hasn't been too bad (touch wood!), so hopefully its all settling down.