permanent ileo advice

If my leak fix on my jpouch does not work, i would like the answers to these questions as well? plus recovery times, in hospital and back to work.

In your post, you state, “the only thing I'm struggling with now is the permanence of it”. If you have reservations about having an ileostomy, I suggest that you use the time between now and fall to research your options (in case you finally decide that your J pouch cannot be saved). Of course, the ileostomy is one option that many people have had good results with. In addition, there are two continent ileostomy procedures (the K pouch and the BCIR) that do not require having the bag. Many people with failed J pouches and problems with conventional ileostomies have converted to one of these procedures and they have a high rating of success and patient satisfaction. I opted for a BCIR last year when my J pouch of 30 years failed, and I have had excellent results with it. My decision was largely influenced by quality of life issues. Lots of information and contact information is available on the internet. Of course, I would have preferred to retain my J pouch, but there were no “magic cures” for it. Please feel free to send me a PM. I wish you the best with whatever procedure you select.
Bill

Hi Lambiepie

I had my jpouch removed 7 month ago after having it for 18 years. I am 34 years old. Feel free to PM me with any/all questions you have.

I had my butt closed as well, and I'm not shy - ask away!

Hey PoucherInTO, I sent you a PM. I'm not sure how to access the ones I get. In case you replied, I didn't want you to think I was ignoring it.

Hi Lambiepie,

Yup, I was just able to reply to PM today! You should see a tab at the top of your screen that says "New PM!" - just click on that and you should see my reply sitting in there

I'm facing losing my jpouch after 22 years right now as well...would love to do the kpouch but they won't do it on a Crohns patient...

Goldie,
I am not 100% sure anymore.
It used to be a deal breaker but I have heard of a few patients with it that have gotten their k pouches done with success. You might want to send out an email to the closes doctor/clinic that does them near you and ask.
If it is limited to a very restrained zone they will consider it (like stomach...). If it is very wide spread then I highly doubt it.
Sharon

I think the rule is that Crohn's colitis may be OK, but not if there is small bowel Crohn's. The reason is that if there is small bowel Crohn's, then there is anassumption of future bowel resections, and they need to preserve as much small bowel as possible. You can live without a colon, but not without a minimum amount of small bowel.

Jan

I have had a j pouch, k pouch, and perm ileo. Feel free to PM me. I felt the same way before my last surgery. I hated my temp ileo and couldn't wrap my head around making it permanent. 3 years later, I have to say it was the best thing I ever did.

Thank you for your advice and support.

Hi, very good post. In March I weighed 165 and had a temp ileo in preparation for possible pouch redo by Dr. Remzi at Cleveland. I now weigh almost 190 and feel very, very good. But I feel well enough to consider going through it all again. One other good option now seems to me and end ileo that is a bit better managed than a loop -- which gives me control problems from time to time.

My question would be, is a pouch redo almost as complicated as pouch removal? Is removal necessary/recommended? Thanks to all!

I had a pretty well behaved loop ileo before my J pouch. I had some mucus with the loop (typical) but it was very manageable. I made an assumption that the end ileo excretions with a J pouch abandoned would be similar and that was a wrong assumption. The excretions from the abandoned J pouch grew and were very difficult to control as they were of thinner consistency and different from when I had the loop. They didn’t burn at all and didn’t have much smell but were more than annoying. Others have had this same issue of diversion pouchitis (but it really isn’t pouchitis in the conventional sense as anti biotics and UC meds had no effect on it. Apparently it is the complete cut off from the fecal stream that causes this. Some people use special enemas that contain fatty acids with ok results. Not everyone seems to have this problem but after 6 months I had the pouch removed. I figured at some point the J would come out but was hoping to get some years before that happened. I am unusual in that I did not get the back side sewn up and this so far has worked out well; not sure why this is done pro forma unless one has crohns but it made recovery very easy. I was recently informed that it is very common in England to leave the abandoned pouch and treat any symptoms that may show up. I was told they go to an end ileo. Not sure this is true as I couldn’t find any other mention of this on line.

PouchInTO, sorry to bug you again, but I sent a PM recently. You are making me so much more comfortable with my decision. Thank you.

Hello! I just had my j-pouch removed on April 25th, so I'm 8 weeks of my new perm. ileo. and Barbie butt. My j-pouch was 15 years old and I so struggled with the decision to have it removed. I was scheduled for this surgery a year and half ago and cancelled it then. It took me this long to get my mind around it also! Feel free to PM me as well.

I'm happy with my decision! I'm healing great!

Laura

Feel free to PM me, too. This is my first time back on the site in a very long time, but I will start being better about checking.

I had perm ileo w/Barbie Butt done just over a year ago after 15+ years of chronic pouchitis and increasingly toxic drugs that didn't work (last was Remicade). Loving life!

feel free to pm me too. i did it 27months ago. And despite complications out the whazoo for over a year afterward... it was by far the best decision I have ever made regarding my medical care. It is sad that this is presented as a last ditch effort to patients when it really should be presented as a way to have a great quality of life.. and not waste your life away.. trying to play the jpouch game. really.. pm me if you would like.

I totally agree with Liz. She was one of my inspirations for doing the surgery!

This is all very comforting to hear. Liz, thank you for saying that this should be presented as a viable option, not a last resort. I've always gotten that impression from my surgeon. I also wish he had finished our initial conversation four years ago with, "BTW, think hard after surgery number one. If you're satisfied, it's a whole lot easier to maintain that end ileo than to remove a j-pouch once it's created." No, he waited until I came back to discuss removing my difficult pouch to tell me how it's no simple surgery. Anyway, it's too late now, but it's nice to hear someone who's gone through this feels the same way.