Huge Dilemma, Please help. J-pouch/rectum removal/neither?!

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mazey
New Member


Date Joined Mar 2010
Total Posts : 16
   Posted 10/8/2010 10:47 AM (GMT -6)   
Hi there,

Just to give you a bit of history before i ask my question, I'm 22 and had surgery 10 years ago to form an ileostomy as a result of a lifetime of Crohn's Disease. Things have been very up and down since with numerous other surgeries and a temporary jejunostomy for a while.

These days I'm frequently needing to rush to the toilet to pass either mucus or a bit of blood from my back passage (left intact when they did the surgery).

So now I've reached a point of huge dilemma. Do they remove the retum and anus entirely and be done with it, risking a lot of healing problems that go with that kind of surgery? Or alternatively they are thinking about reversing the ileostomy and creating a j-pouch.. which means I will be going to the toilet probably as much as I am now anyway.
Therefore neither of these options seems too promising. So should I just do nothing and live with a bit anal bleeding and toilet rushing..

On a seperate note they may also need to remover more of the very small amount of small intestine that I have left due to adhesions etc.. which may not leave me with enough to live without a substantial number of hours spent on TPN a day.

AAAAH.
Everything seems very confusing and difficult at the moment and it seems like whatever I chose I'm going to be left in a worse position than I am now.. but it also seems like I need to do something and can't stay in this state.

Any help or experience or advice would be greatly appreciated.
:(

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 10/8/2010 11:01 AM (GMT -6)   
If you have Crohn's a jpouch won't be an option so you can eliminate that scenario.

From those whom I have met that had similar problems, they were much happier when they had the rectum removed and the anus sewn shut. It doesn't appear that you want more surgery but if you want to be done with the hassle of still using your rectum you will need to schedule surgery.

Sue

mazey
New Member


Date Joined Mar 2010
Total Posts : 16
   Posted 10/8/2010 11:08 AM (GMT -6)   
hmm that's confusing as they said another option was to reverse the ileostomy and create an internal pouch.. which I presumed to be a J-pouch.
I must have gotten mixed up somewhere along the line.

It's hard to feel confident about having everything removed and sewn up when there seem to be many more stories online of ongoing healing and recovery problems than there are of success!

Thank you for responding though x
CD for 15 Years, Ileostomy for 9.
7 Re-sections since then and just started on Methotrexate!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 10/8/2010 11:11 AM (GMT -6)   
Well there in lies the problem. You hear a lot of complaints online as that's where people go to complain. The vast majority of ostomates are doing exceptionally well and are out living life.

Sue

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/8/2010 11:48 AM (GMT -6)   
sue is right, people come online to get help for a problem, most dont come on just to say, im great have a nice day,lol.
Some of us stay who are doing great stay around to help and give support.
I had mine removed when i had my ileo surgery, and its a weird thought, and yeah it does hurt, but it doesnt last long. The worst thing, honestly, was the itching, but there is some cream that helps, and there are other things you can do to help some.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 10/8/2010 3:19 PM (GMT -6)   
some get k-pouches for Crohn's...could they be talking about that? Have you ever had fistulas? If you have, don't even consider an internal pouch...it's not a matter of if you'll get one, it's when:(

I'd be concerned that if you are that close to SBS you wouldn't have enough small bowel for an internal pouch...have you considered a second opinion by another CR Surgeon?

Personally, I was much older than you when I had my proctocolectomy, and I had my share of complications, but it really wasn't that bad considering the quality of life I have now. It did take a year to get through it but I wasn't house bound during that time either!

I am one that comes back to help...my life now is 100 times better than when I had that diseased lower portion!!!
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 10/8/2010 3:30 PM (GMT -6)   
Hi!
I have Crohn's also and now a permanent ileo. I would never have opted for the J pouch--too much risk of developing Crohn's there. I had my rectum removed when I had my original surgery, and I don't regret it at all. There are possible complications, but all can be taken care of, unlike the constant mucus situation you have. I had mine done 7 months ago now and it was fine. Uncomfortable for the first month or so but then it was fine.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/8/2010 9:40 PM (GMT -6)   
Welcome, Mazey. I'm sorry you've had to deal with Crohn's all of your life and at such a young age. I was 28 when I was diagnosed with Crohn's and had ileostomy and proctocolectomy surgery at age 35.

Thankfully, I'm another success story. :-) The disease was in my rectum and large intestine, and I had them removed 4 years ago. The surgery wasn't nearly as bad as I was expecting, and I was surprised to go home from the hospital 4 days after surgery! I was even out driving and grocery shopping two weeks later. There was some pain, but nothing that pain meds didn't take care of. I feel great, have no regrets, and wish I would have done it years sooner.

Good luck with your decision, and please keep us posted!

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 10/9/2010 8:38 PM (GMT -6)   
mazey

I think you need to find out why you are passing the mucus and especially blood before you decide on more surgery. I had my ileostomy 3 years ago. I still have my rectum and anus. At first I would pass some thin yellowy fluid every few days. Surgeon said it would go away and it did. Now I might pass some fluid once a month. But there is no urgency. Have you discussed your problem with your GI or surgeon?

Dan

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 456
   Posted 10/10/2010 10:33 AM (GMT -6)   
Keep in mind some people have no problems when they have their rectum shut and some people have to wait for it to heal. I had my surgery on June 11th and in july I had to have my rectum area packed every day. It was 5cm deep and it wasn't healing so a month ago they hooked up a wound vac to me. It is now 2.5cm.
The doctors never told me that could happen,.
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