HealingWell
Search Close Search
☰

Rectum Removal for fistula?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/1/2011 2:27 AM (GMT 0)
I have at least 5 fistulas, and they continue to be inflamed and painful, despite having a colostomy and being on remicade, flagyl and cipro :(

I saw my surgeon today and she wants me to have a cat scan and colonoscopy. If my colon comes back clear, she wants to remove my rectum. If the colon is diseased, she wants to remove my rectum and colon, and change my colostomy to an ileo.

Has anyone had their rectum removed???? She wants to keep the anus intact for now as it seem to have better results in people with severe inflammtion.

I am wondering, will this finally, FINALLY help the fistulas? They are getting worse and worse and I have NO quality of life.
Oh yeah, and I also have a new RV fistula which is making me feel like I'm peeing myself and giving me cramps.

Its like the CD is saying.. oh, yeah, you think you can beat me? WATCH THIS!!! and the more I up the meds, the worse the symptoms get. How can I possibly develop new fistulas and abcesses WITH colostomy and on remicade???

***?

I am so disillusioned right now...please, someone give me a shred of hope. cry
Posted 4/1/2011 5:52 AM (GMT 0)
I'm new to this. I have no answers at this point, only questions. All I can offer is a {{HUG}} and positive thoughts that things get better for you.
Posted 4/1/2011 11:02 AM (GMT 0)
It was the only thing that helped me. You could also ask your question on the Ostomy Forum...many of us there had similar experiences with our disease.

I never had an option for a colostomy...colon was too bad...but my ileo has treated me well over the years!
Posted 4/3/2011 12:59 AM (GMT 0)
equestrian mom- do you remember how many months or years it took approximtely for you to see improvement with fistula drainage and fistulas healing? Did you take biologics at the same time? (remi or humira)

Thank you!!
Posted 4/3/2011 2:24 AM (GMT 0)
Do you mean before surgery? My fistulas never stopped draining (setons) and no matter what we tried (meds/surgery) nothing worked.

I did try 3 Remicade infusions but developed antibodies...Humira wasn't available then. Had a temporary ileo before my proctocolectomy which helped but never stopped the issues.

Post surgery I had surgical healing and the fistulas sites healed too. I did have my anus sewn shut, though.
Posted 4/3/2011 3:43 PM (GMT 0)
I wish I could offer u some advise I had only one fistula it was  on the right check of my bum and drained steady and had a seton placed with no success and tried remicade and developed erythema and than humira and it took a while but it did heal it took almost 2 years I can't imagine what u r going through,,,,but a good friend of mine had several and suffered a long time and had a RV fistula a RA fistula a 2 RS fistulas and she had numerous surgeries without an ostomy but she was sick and in pain a long time and has now gained some much needed weight and looks good considering all she went through I'm gonna try 2 get a hold of her she moved from my area so she was closer 2 a city hospital but I will c if she will come on and tell u her experience and maybe she can give u some advise..I'll b in touch till than I'll keep u in my thoughts and prayers...Stay tough u r running ur life remember that Crohn's isn't u r don't let it get one step a head of u,,,I know that is just words but a wise doctor told me that a long time ago and I hold it close cause Crohn's patients r tough as nails and if u can go through all that pain and suffering up till now u already beat the monster brewing inside ur body,,words 2 live by...All The Best...Jen~~))))HUGS((((~~ smilewinkgrin
✚ New Topic ✚ Reply