I'm sorry to hear your girlfriend is struggling. CC is one of the best, and with the diagnostics you note, they probably do have a pretty good chance of getting the diagnosis correct. 85% chance of success sounds pretty good, especially if the alternative is to just give up on the j pouch idea and go to a perm ostomy.

I'm not sure why they would need 3 steps though? I thought step 1 of a 3 step was usually the removed the diseased colon and let your body heal up a bit before proceeding. In this case wouldn't they divert to a temp ileo and try to fix or create a new pouch, and then once that heals successfully, reconnect everything again?

You can always get a second opinion, but you are already at one of the best places for pouch care. I would be leary of a doctor who said they could try to do the repair in 1 step without diverting (although someone might be willing to try), given that she had issues with small leaks and weird healing already with the first one when everything was done in steps the first time.

Many of us who have had the temp ileo know the feeling of dread associated with the idea of going back to it again, but if her current condition is not livable and medication cannot correct a structural issue, the only other alternative seems to be a perm ostomy which would probably be less desirable than a temp ostomy?

I think you have to give yourselves some time to process all this news and permission to grieve, be pissed off, be frustrated, whatever-feel the feelings. I'd be having all those feelings if I were in her shoes. You kind of have to go through the stages of grief-Denial, anger, bargaining, depression, and then get to acceptance.

Then you have to really consider all the alternatives and options and figure out a way to make the choice that feels best to her.

Please be kind and nice and hug your girlfriend and tell her you love her no matter what and you will stick by her through this no matter what(if that is true), because that is the kind of emotional support she could really use right now.

Take care-

quote:

Do we HAVE to do all three stages again, or can this be fixed without going back to a jpouch?

Did you mean to say fixed without going back to an ostomy? That makes more sense than avoiding going back to a j-pouch, since she did not want an ostomy.

85% chance of success is quite good, actually, and the CC is one of the best centers for pouch salvage and/or reconstruction, since they have so much experience. He probably cannot estimate higher odds because of the unknown regarding what is left to find in there. Imaging only tells a partial story.

I believe that Dr. Remzi is suggesting the 3 step because there is so much damage, disease, and inflammation in there. In those cases, they like to just divert for a few months to give time for restoration of health. Pouch reconstruction is a big deal. Bigger than the first time around. This is because with all that inflammation from the leaks, there will be a lot of adhesions and the tissues will be difficult to dissect out. With this amount of dissection and reconstruction, a diverting ileostomy afterwards is pretty much required.

Now, if you really meant that she would rather scrap the pouch, then there is an option of a continent ileostomy (Kock pouch) that CC does perform. Another type is BCIR, but CC surgeons do not do this type.

Jan

Hi there,

I just returned from Cleveland today. 6 weeks ago i had a pouch revision surgery completed. Long story short, i was cleared for take down in 6 weeks. I am choosing to wait until April so my pouch has had a full 6 month healing time.I have been fighting this situation for over 1 year. It has been a monstrous journey to say the least.

Please pm me and i will go over all the details. It might be easier to talk in person if you like.

Dr. Remzi did a redo surgery on me. It was a nine hour surgery. I was in the hospital for a little less than a week and was back to myself in less than 4 weeks.

Dr. Remzi is the best. If he says do it in three surgeries.. he is saying that to ensure success. He is probably the most knowledgeable and talented surgeon to fix broken jpouches in the world. I had similar issues after my jpouch was first connected. I got to Dr. Remzi and he did an immediate disconnect. I then chose between a 3step redo and a pouch removal. I chose the later.
Anyways... point is.. Dr. REmzi really cares for his patients and he will do whatever it takes to ensure success and a better quality of life for his patients. . I love that man! my advice... trust him

Ok so I see your in NY. I Had something similar to your girlfriend. Cleveland recommended pouch removal and a total redo. But my surgeon in NY was able to discount the pouch, clean out the infection, make it straight ( it also strangely moved), and hand sewn it back. This is call pouch advancement. Please contact Dr Milsom at Cornel, NYC for a second opinion. I have been pain free ever since, 15 years and counting.

I am in middle of 3 step pouch redo with Dr Remzi also. Step 1 was in July and he is adamant about waiting 6 months before step 2.

I am curious who your girlfriend's surgeon in NY was. I too was diagnosed with the "sideways" pouch and my initial surgeries were in NY.

Feel free to PM me anytime