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tired2
New Member


Date Joined Oct 2006
Total Posts : 14
   Posted 10/6/2006 6:22 PM (GMT -7)   
Hello,
I have had UC for 13 years.  Currently going through a flare that just won't settle down.  It has calmed some but, not all the way gone.  The Dr. is thinking surgery.  I know that eventually it will have to be done and part of me says go on and do it now while I am still young enough to make a better recovery and enjoy more of life after.  However, the thought of surgery, recovery, a temporary bag, etc. are concerning to me.  I have two young children and the UC is controlling my life.  There are so many things I choose not to do because I am worried about loss of control in a public situation which has happened recently on several occasions.  I guess my question is what is the recovery like?  Painful, long, I have no idea what to expect really.  I would appreciate any help you could give.
 
Thank you,
tired2

Smiley Sim
Regular Member


Date Joined Aug 2006
Total Posts : 49
   Posted 10/7/2006 6:24 AM (GMT -7)   
Hi tired2,

I had my entire colon removed earlier this year. It wasn't necessarily through choice but more through neccessity. I have to say it was well worth it! I felt so much better after my op...but obviously very tired for the first couple of months....you do need to take it easy and regain your strength. The more you walk around though, the better and more active you'll feel. If you lie around I reckon your recovery wil take so much longer.

I had to take painkillers after my operation, and was alittle sore around my stitches. But to be honest for me, the operation wasn't as painful as I'd expected at all, it was a walk in the park compared to the UC pains.

Everyone differs in their recovery, but a positive mental attitude and pro-active behaviour will be your best friend.

Hope all goes well for you, good luck!

Smiles.
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 10/7/2006 7:35 AM (GMT -7)   

Surgery was the best health decision I have ever made.  I am almost 6 years out from a 2-step j-pouch.  The temporary ileostomy (believe me, I dreaded the thought) wasn't so bad as I felt so well for the first time in several years.  It allowed me to go out in public without the fear of losing control of my bowels.  Recovery and adaption to the new plumbing can take a year but as Smiles said, have a positive attitude and be patient with the process.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


tired2
New Member


Date Joined Oct 2006
Total Posts : 14
   Posted 10/7/2006 10:56 AM (GMT -7)   

Thank you for the replies.  I thought it would be worth the surgery but, I am just dreading the recovery.  I have a low pain tolerance and the bag issue.  I hope they give me pain killers like you received.  How often do you know have bowel movements?  Do you have urgency?  How about frequency?  This really helps to get information from people who have been through it.

Thanks again,

tired2


Smiley Sim
Regular Member


Date Joined Aug 2006
Total Posts : 49
   Posted 10/7/2006 11:29 AM (GMT -7)   
Hi tired2,
 
I empty my pouch around 4 times a day, once when I wake up, once later in the morning, in the afternoon and before going to bed. Because the motions are emptied straight into the bag now and not from behind, I do not have any feelings of urgency.
 
I've noticed that the foods that I eat can affect how often I need to empty my bag, but it is not nearly as much as before I had the operation.
 
I am sure your doctors will give you painkillers. I'm pretty useless when it comes to pain threshold, so believe me, if I can handle it - anyone can. Personally, I'd recommend the op, it has really improved my lifestyle.
 
I hope you'll learn to love your pouch and accept it as part of you, once you've done that, everything else should be a whole lot easier. I dress it up so that it can't be noticed, and those that I've told about it often comment on the fact that it seems invisible.
 
Hope this helps.
 
Smiles
 


4WillP
New Member


Date Joined Sep 2006
Total Posts : 14
   Posted 10/8/2006 3:37 PM (GMT -7)   
  I had my ileostomy surgery in june of 06 and it was the best decision of my life.  I suffered from UC for 3 years and just like you my last flare up was the worst.  No matter what treatments the my Dr. tried nothing worked so, I was forced to have the surgery.  They removed my entire colon and rectum.  At 26, I thought my life was over.  But wearing the bag isn't as bad as one would think.  Of course, it takes some adjusting to but before you know it, it is time for the reversal.  The surgery itself was rough for me due to infections, but after a month I was okay.  I just recently had my reversal two weeks ago and I feel better than ever.  Only thing I'm watching for now is my diet and trying to get my energy back.
 
Will
Will

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