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Anita I
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/11/2008 6:59 PM (GMT -6)   
Hi I had my surgery for the illeostomy on August 5, 2008 and I am now scheduled for the JPouch surgery on November 5, 2008.  I am so scared.  the doctors told me that I have two feet of colon left and I am in an ulcerative colitis flare with just that two feet.  I am bleeding heavly from the rectum.  What happens when I have the J-Pouch surgery can I still flare up.  Iwanted to wait until June to get the J-Pouch surgery but my doctor said no it has to be done right away.  Why I don't know.  I get very intimitated by these doctors.  They talk so fast and half the time I don't understand what they are saying.  I am having second thoughts about the surgery for the J-Pouch.  It seems like people are having such problems with them.  I am getting used to the external pouch but I don't want to have it all the time.  Can anyone give me any suggestions about the flare up with the two feet of colon and if I should attempt the J-Pouch surgery. I am 50 years old with two boys 18 and 16.  My husband passed away in February, 2008 from Pancreatic Cancer so when I make the decision about the J-Pouch surgery I have to make sure I have someone around the house to drive the 16 year old to school everyday and pick him up.  My boys tell me not to have it.  I think they might not want to be inconvenience again with the hospital stay and being alone.  I am a very confused person.  Any suggestions from anyone would be greatly appreciated.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/11/2008 7:16 PM (GMT -6)   

Anita,

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. sad

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.

Cecilia


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 10/12/2008 2:16 AM (GMT -6)   
I'm sorry about your situation.

I was back to 100% normal after they took all of my colon out and I'm med free and can eat whatever I want. I have my j-pouch surgery on November 25th, and my ileostomy reversal sometime in February.

They can remove your colon and anus even if it is in a full flare and bleeding, that's how mine was when they removed all of mine, so that shouldn't be something to worry about. If you have UC and not Crohn's, your small intestine should be completely normal, and not inflamed, so therefore, when they make the j-pouch out of the small intestine, it should not be inflamed or get inflamed, and they'll just remove your diseased colon and anus.

The surgeons will not make the j-pouch if your small intestine is inflamed during surgery, that would indicate to them that you have Crohn's and not UC. So if you would go into the operation and they found that, they wouldn't make the j-pouch, and more likely they would remove the remaining colon, and you'll have an end ileostomy instead.

Either way you'll feel much better...but you still have to decide what you want to do.

I have no colon and an end ileostomy now and feel 100% normal again...living the "worst case" j-pouch scenario now and I don't have any regrets.

Also, don't forget, the successful j-pouch people are living their lives, they are not all on here explaining how good their life is. Your seeing the small percentage that are having j-pouch complications on here. At the Cleveland Clinic, they report only a 5% chance of total j-pouch failure --> permanent ileostomy. Pouchitis is up to 30% chance but treatable with antibiotics.

Hope this helps.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
8/05/2008 - Unexpected surgery to remove blockage caused by scar tissue
Jan. 2009 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 10/12/2008 2:21 AM (GMT -6)   
Sorry, I meant rectum instead of anus in my earlier post. It's getting late.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
8/05/2008 - Unexpected surgery to remove blockage caused by scar tissue
Jan. 2009 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 10/12/2008 1:57 PM (GMT -6)   

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.

John

 


Total Colectomy with End Ileostomy May 27th, 2008

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