Wanting a reversal of my Ileostomy

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lostmyself
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/26/2009 1:51 AM (GMT -6)   
Three years ago, after going through four years of being misdiagnosed with Chrons, I was told I had colonic motility disorder and needed to have a subtotal colectomy. After a terrible stay in the hospital I was finally "better". For a year and a half. I started having problems again and a few instances of incontinence. I went to a specialist and after numerous tests he couldn't figure out what was wrong. By this time I never left my house. I was afraid to be away from a bathroom. Finally, he told me in order to improve my "quality of life" I should have the ileostomy surgery. Of course, I agreed. I was miserable. The only problem is now I think he was way wrong. I am in more pain than I ever was. I have a constant burning under the wafer. I don't want to go anywhere or talk to anyone. I have become a recluse. After he did the surgery he commented to my family about how full of adhesions I was. The doctor that did the subtotal colectomy also said that. Two months ago I had to have my left ovary removed because there were multiple cysts and a tumor. Afterwards, the doctor told me the adhesions were so bad she couldn't even see the right ovary to asses it. She said my insides were a complete mess. I know now that every symptom I have had over the past 20 years can be attributed to adhesive disease. My body grows adhesions on it's own. Don't ask my why. All of this could have started when I had my first C-section 20 years ago. I think the ileostomy could have been avoided. I don't think I need it. Now I just need to know how to go about finding a doctor that will actuall do a reversal.
 
cry  Please help with any information you may have. I am desperate to get my life back. I know I am not emotionally or mentally able to live this way. I desperatley need someone to help me.
 
Thank you!!!!

mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 7/26/2009 2:14 AM (GMT -6)   
hmm...interesting story. my quality of life has certainly improved even with the occassional wafer burning and the image of the poop bag hanging off my stomach that is sometimes frustrating. but here is the thing for me, its better than the life i was living before with most of my time on the toilet watching my colon deteriorate before my very eyes. there is no need to be a prisoner in your own home. i took my kids fishing today...you should do something outdoors that you find peaceful and relaxing. you shouldnt regret the ileostomy. it sounded like the surgery was necessary.
as far as the adhesions, did you or do you need to go back for surgery? a reversal in my opinion would boost your self esteem but some people cant have the reversal because of too many risks. not sure what those risks would be for someone who develops scarring like you do but it doesnt hurt to talk to a surgeon and ask if it can be done.
Age:31 Married with children.
--
Ulcerative Colitis cause: In 2003 I took Accutane for about 4 months, strong side effects of abdominal cramping and bloody stools.
May 2004: Diagnosed with Left sided UC -should have understood the IBD warning and should've never taken the dangerous drug
known as Accutane.
May 2004- May 2009: Prednisone, Asacol and many other med's that did not work well-Remicade was great for 16 months then suddenly stopped working.
---
May -June 2009: Pancolitis- chronic 2 month flare up that put me out of work and made me seriously think about surgery.
June 24th 2009: elective colectomy/ileostomy at Barnes/Washington University.
August 2009: planned rectum removal and j-pouch construction.
October-November 2009: planned Reversal.
----
Summary: Suffered 5 long years with severe Ulcerative Colitis, Anxiety and depression.
No more diseased colon. No more running to the bathroom 20+ times a day. No more cramping and bleeding. Satisfied with first surgery.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 7/26/2009 7:36 AM (GMT -6)   

Adhesions can be a real problem and I'm not sure what you can do at this point.  For some people with adhesions they have found that  myofacial therapy helps reduce the pain.  As for reversing your ostomy, was it a loop ostomy?  If so you can get that reversed.  Just know that reversing your ostomy, although it might help with your skin condition, will not help with your pain.  It's a difficult choice.

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


lostmyself
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/27/2009 3:10 AM (GMT -6)   
Thank you for your help. My real problem is that I was never given a real medical reason for the ostomy. Only that it could improve my quality of life. I feel if adhesions had been researched then they may have found the answer, I still have all the same symptoms and some are worse. None are better. Yes, the procedure was done with a loop. I just want someone to go in and reverse the ileostomy and remove all of the adhesions. They have grown into my abdominal wall and onto my intestines and completely enclose my right ovary. There are ways and materials used to inhibit the regrowth of adhesions. So maybe I will find someone that can do that.
 
Thank you for you help and support. I really appreciate.
:-)
 
Sherri


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 7/27/2009 7:07 AM (GMT -6)   
If you're prone to adhesions and had your current ones removed and seprafilm added, that's still not a guarantee that you will be adhesion free. I don't mean to sound negative but for those with severe adhesion formation tendencies, which it sounds like you are, there is no real fix. You can have your ostomy reveresed, it sounds like you need to make an appt. with a CR surgeon.

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


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 8/1/2009 8:58 PM (GMT -6)   
You might do some research for hospitals that specialize in reversals (like cleveland or mayo) and see if you can go for a consult. See what they say.
Unfortunately, your adhesion disease may not like a reversal.....who knows.

I've heard of acupuncture being a good therapy for adhesions.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 8/1/2009 9:55 PM (GMT -6)   
Hi Sherry

I am sorry to hear about your suffering. Well even though ileostomy and colectomy has proved to be a boon for most of the patients with UC, but a few of us do not get the intended results. It may be because of our prolonged use of steroids or other post operative complications. But you should not loose heart. The things would definitely be better. Have a strong will power. Keep yourself busy. I have the worst kind of adhesions, incisional hernia, other complications, associated with my surgery, but I try to keep myself busy.

So far as infection / burning under the wafer is concerned, it may be skin infection. I had it for over 4 months. Tell you stoma nurse to change the appliance brand. At times one gets allergic to a particular adhesive used in the appliance. They may also put you on to a prednisolone for a week or so. My bag would not last for more than half an hour and would leak because of infection at the wafer site.

Well take care. Don't be disheartened. Once you because strong willed, nothing bad can happen to you. My concept is that so long my life line is there, nothing bad can happen. It he has put me to it, he will pull me through it.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 

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