Fistula Surgery/Future Colostomy

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Regular Member

Date Joined Apr 2003
Total Posts : 43
   Posted 2/21/2011 9:41 PM (GMT -7)   
I am 40 years old and I have Crohn's Disease and RA. I had a colon resection in 2000 due to a blockage. Several years ago I developed a retrovaginal fistula that causes me to leak gas and pass stool through my vagina. Under my doctors care I have tried several antibiotics and Remicade to heal and close the fistula. I am currently on Cimzia injections, Lomotil, and Methotrexate injections. Last week I had a colonoscopy and my gastro has suggested that I have surgery to repair the fistula and to give my colon time to rest and heal. I will have to have a colostomy for at least 6 months. My gastro has advised me that due to my diseased bowel it may be permanent. I am scared and nervous beyond belief. I am not sure what to expect. I am worried about the daily care involved with a colostomy. My husband passed away several years ago, but I recently have developed a new relationship and I am embarrassed to discuss this with him. I have questions about intimacy and having a bag. I just feel like that I have no one to discuss my concerns and fears with. I appreciate all input and advice. Thanks :)

Regular Member

Date Joined Jul 2006
Total Posts : 69
   Posted 2/22/2011 8:30 AM (GMT -7)   
Hey harley57,
I'm so sorry that you are going through so much. I have UC and am having ileostomy surgery on March 1st. So, I know how it feels to be scared, you are not alone. I to have a RVF, that I got during the delivery of my son. It can be very aggravating and embarrassing. My doctors are always telling me it isn't a life threatening problem, so they brush it off like no big deal. Ha! They aren't the ones who have to live with it. I have had two surgeries trying to repair the RVF, but the first one only lasted a day and the second one lasted four days. It is hard for these injuries to heal with someone like us, who have IBD. I don't have an ostomy yet, but I have spoken with many people (especially on here) and they have all encouraged me that it isn't absolutely horrible. I haven't been able to be intimate with my husband for a year (because of the RVF), so with getting an ostomy, I am looking forward to being intimate with my husband again. If the man in your relationship loves you, he will look past having an ostomy. Actually, from the research I have done online, it seems like most men can very easily look past having an ostomy. My husband is a very caring man, who loves me a lot and has no problem with the idea of me wearing an appliance. I know this is a scary time for you, it's scary for me too. All I can really say is that you are not alone and that there is always someone here for you to speak to. I wish you the best of luck in your future surgeries and relationship.
29 year old female
Ulcerative colitis- 13 years
Current meds- sulfasalzine
Meds tried- suppositories, enemas, asacol, prednisone, lialda, immuran, sulfa, remicade
End ileostomy surgery- March 1st

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 2/22/2011 9:23 AM (GMT -7)   
I had my stoma first done at 20 yo and didn't meet theman who became my husband until 2 years later. In between I had other boyfriends and neither was concerned about the stoma or bag. If you are in a loving relationship then your partner will not be bothered. My husband doesn't even notice it any more, I even had two tattoos done on my hip and above belly button of dolphin and 'Shamu' the killer whale so that I had something pretty to look at in the mirror instead of the huge areas of scars from all the various surgeries and abcesses.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Regular Member

Date Joined Feb 2011
Total Posts : 20
   Posted 2/22/2011 10:01 AM (GMT -7)   
I too had a fistula, trust me having a stoma is 100 times better than going thru that. good luck with your surgery and i'm sure your man will be by your side.mine is!!
think positive, live life to the fullest!!!

Veteran Member

Date Joined Feb 2010
Total Posts : 720
   Posted 2/22/2011 12:25 PM (GMT -7)   
I have never had a fistula, but my stoma or pouch has not bothered my husband at all. He was as excited as I was to have me rid of UC and be off the medications. He was there with me when we had the first visit with the wound care nurse at the hospital and learned to change the appliance with me. Once I got home, he helped me with it until I was able to manage it on my own. I don't know how it would be in a new relationship, but I would approach it with openness and honesty. It is nothing to be embarrassed about. If anything, it shows that you are a strong person who is willing to take brave steps to get your health back.

And as far getting intimate? I just put a band around my waist that holds in the pouch. I was really worried the first time after surgery, thinking it would be weird with the pouch or that it would hurt. Quite the opposite! It felt so much better as now I have no colon pain which was always aggravated a bit during intimate moments. Not to mention not having to deal with enemas before bedtime!
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010
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