going in for ostomy surgery - need help and advice

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CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/13/2006 5:41 PM (GMT -7)   
i could have sworn i had colonic inertia. my gastro put me on zelnorm and it worked some what, allowed me to go to work but that was all. this has been going on since november 2005.  i am so miserable and fed up so i saw the surgeon today about solutions.  he did a sigmoidoscopy and said my problem probably isnt colonic inertia, it is sever perianal disease in the rectum and anus due to crohn's disease and that is why i cant have a proper bowel movement. he said i need a colectomy, ending up with a permant extermal bag. no possibility for a reversal.  yikes.
 
so my question is, what can i expect?  how will my life change?  what are some problems to be aware of and some tips and tricks of dealing with an ostomy?  any advice?  words of encouragement?  do i need to get rubber sheets?  will i be able to tuck my clothes in?
 
to be honest, i've just been numb since he told me this afternoon.  on the brighter side of things, besides the perianal part, i am not having any problems with CD.  That seems to be under control from a surgery in july 2005 that took my sigmoid and 2 inches at the ileum.  the doc said this will be good for me cos i'll start eating again, put my weight back on and feel healthy and be able to do stuff again and not feeling run down and miserable.  so i am looking forward to that.
 
crazy harry
 
 

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/13/2006 7:15 PM (GMT -7)   

Harry,

You might want to seek a second opinion.  I have never heard of Crohn's being diagnosed by just "looking".  How does he know it's not ulcerative colitis, the other inflammatory bowel disease?  If you have UC you could opt for a j-pouch or a Kock or BCIR pouch.  I think you might want to see a GI who is experienced in IBD and get a firm diagnosis before resorting to surgery.  I had severe rectal disease, mine was UC.

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
 


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/13/2006 9:39 PM (GMT -7)   

Hi Sue.  I was diagnosed with crohn's in 1993.  first it was at the ileum and then jumped down to the rectum/lower colon a few months later.  since the inflammation/perianal disease is in the rectum and anus, they cant save it, hence no pull through/temporary ileostomy.  they dont want to do an internal pouch since they dont have a lot of success with that for crohn's patients for one reason or another, so you end up with a permanent ileostomy and an external bag.

what exactly is the j-pouch?  is that an internal ileostomy? (forgive my ignorance, this whole type of surgery was scary for me on day one back in 1993 that i never educated myself in it. now i have to crash course).

harry.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/14/2006 6:06 AM (GMT -7)   

Harry,

A j-pouch is a false rectum that is made from the small intestine.  You are right, this is not recommended surgery for one with Crohn's unless the Crohn's is limited to the colon. 

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
 


earthgirl
Regular Member


Date Joined Feb 2006
Total Posts : 51
   Posted 7/14/2006 2:36 PM (GMT -7)   

Harry,

It is a scary thought to have a permanent ostomy, but I think after the initial shock of the surgery wears off and you are on the road to recovery you will realize how much better your quality of life is.  The first month of recovery will be the toughest and after that you will notice that with every week you will feel better and better! 

 I have UC and although my ileostomy is not permanent, at 24 it was a huge decision to have the surgery as I am not married (or even dating) and was worried about how it would affect my appearance.  I had the surgery in March and even though I had some fairly serious complications I do not regret having the operation.  And I have to live with my ostomy for a lot longer than most people who get reversals because of a blood clot that I developed about one month post-op.  So in total I will likely have mine for around 9 months where most people only have theirs for about 3 months before getting a j-pouch.

You cannot see the bag through clothing, and yes you will be able to tuck in your shirts!  I can wear clothing that is quite fitted (more so than I think a man would ever wear) and the only reason a person would know I have an ostomy is if I had told them so!  It really is no big deal to maintain it either.  Once your stoma has stopped shrinking (it can change size for about the first three months) you really only have to change it once a week and without the hassle of measuring it etc....  Do not hesitate to ask your ostomy nurse any questions, they are there to make this process as easy as possible for you.  There are no stupid questions.

If you have any questions that you don't wish to ask here, please do not hesitate to email me and I will do my best to answer them for you.

Earthgirl :)


E.Streit
New Member


Date Joined Jul 2006
Total Posts : 1
   Posted 7/22/2006 2:08 PM (GMT -7)   
Hi Harry, With a open positive mind , you won't have any problem with a permanent bag. I missed your age, but at 50 I received a permanent colostomy and I was a mess for a while, being atheletic and always concious about keeping slim . Even though I developed a very pronounced perestomal hernia , with help of a belt , still wear nice clothes. More importantly, I still play ice hockey in a very competitive setting.
Good luck , your going love being pain free!!!

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/23/2006 6:07 PM (GMT -7)   
thanks a lot for the advice. i feel a lot more comfortable now. from talking to my docs and what i have read here on this website, the upside after i adapt seems phenomenal. my problem is just overcoming the mental aspect, but we all must walk through the fire in our lives to get better.

i am gonna postpone the surgery for a bit here and try some chinese/probiotic therapy and radically change my diet to see if that helps at all. i know i'd just kick myself and always think "what if?" if i didnt give this a fair chance. right now i can go to work but i dont do much beyond that. technically it is elective surgery but radical permanent elective surgery.

i'll let you all know now the diet works out for me and if i decide surgery really is the right thing for me, i'll be picking all of your brains!

crazy harry
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