I'm so sorry that you lost your husband to pancreatic cancer. My 56 year old grandfather and 44 year old friend both passed away from it, too.
Please don't be scared about all of this. It's your body, and the doctors cannot force you to do something you're not ready for. If you still have UC in your colon, then you're going to continue to have it, if they keep that part in.
I had my entire colon and rectum removed and have a permanent ileostomy. I was not a candidate for a j-pouch, because I had Crohn's in my rectum. If you have a healthy rectum, then they should be able to remove the part of the colon that is diseased, and connect your healthy small intestine to your rectum.
There are several people on here with j-pouches, who will be able to share their experiences with you. Hang in there, and don't do anything you're not ready for.
Anita, I am sorry to hear about all that you have been through. I hope any information I can offer can help you with this seriously tough decision.
I had my first surgery in such a rush due to complications from the UC. My surgeon thought it would be best to leave a small portion of the colon (about 3 cm) in so I would have time to decide if I wanted the j-pouch surgery. I am not sure why your surgeon left two feet of colon but that is neither here nor there. The bad news is one in three UCers get diversion colitis (UC symptoms in what is left) after a colectomy (I was one of them and I guess that is what you have also). The good news is that having diversion colitis really has no impact on the ability to have a completely functioning j-pouch. Also, you would be rid of the UC because you wouldn't have a colon so no flare-ups.
The only reason I can see why your surgeon wants to do this right away is because if you continue to have problems with what is left of your colon they may have to put you on medications that would have an effect on being able to build the pouch. Prednisone causes the tissue to be thin and frail which will make constructing the pouch next to impossible. If I would have chosen the j-pouch it would have been in three surgeries. The first was to get rid of the colon, make an end ileostomy, get off of the high doses of prednisone I was on and give my tissues time to heal so they would be well enough to create the pouch. Creating the pouch would have been surgery two and then the reconnect would have been three.
I chose to keep my ileostomy so I just recently went in and had all that was left removed. I am finally off all medications and no trace of the disease, that is wonderful. Don't take my decision the wrong way, I researched the j-pouch extensively and found no outsde reason why I shouldn't have it. My decision was based on MY inability to get medical attention in a timely matter (I feared I would cause more problems by not seeing a doctor if there were minor issues). In all actuallity the statistics of failure are very low. The numbers I found said the failure rate was less then 8%, of course there was no number for people who chose to reverse the j-pouch because of not being able to adjust to it. So I would guess that the 8% lumps all of these factors in. I have only heard one story of the pouch failing but three or four stories of people who had them reversed because it wasn't quite what they expected. The rate of pouchitis is said to be around 30% of j-pouchers will have it, (of course this means 70% don't get it) as a side note I found a study that indicated only between 5-10% get it within the first 5 years and the longer you have the j-pouch it increases till it reaches the 30% mark. Just like GISGuy31 stated pouchitis is treatable with antibiotics.
The j-pouch, just like having the ileostomy is an adjustment. From what I have read the j-pouch would be very similar to the ileostomy in the fact that it must be emptied 6 or so times a day, the difference being mechanical (ileostomy) and natural (j-pouch). It is also said that emptying the j-pouch is not like a normal bowel movement but more comparable to urinating.
You might want to ask your surgeon why he feels there is a rush but I would also think that you would want to get rid of the colon that is still causing you problems. The one bonus to the j-pouch is if it doesn't work they can always resort back to the ileostomy and you would be rid of your problem causing colon.
As far as your sons go, I would think that they would want you to have this problem fixed so it doesn't cause more problems down the road. I would guess that at their ages, short of the ride to school, they should be more then capable of handling the few situations that you wouldn't be there for. If you decide not to have the j-pouch I would definately schedule to have the remaining part of the colon removed.
Total Colectomy with End Ileostomy May 27th, 2008