HealingWell
Search Close Search
☰

Chronic fistula

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/27/2014 2:44 AM (GMT 0)
Hello all,

I was diagnosed with UC just last March. After my very bad flare (2 months in the hospital) which ended May I was doing great and even started doing above normal activities like paddle boarding and capoeira and going out. But just this October I had this extreme pain in my rectum area which my GI initially thought it was an internal hemmorhoids, few visits in his clinic and ER then hospitalization again they finally figured out it's abscess.

3 months and 5 I&D surgeries later I'm still "healing". I've just had my last surgery 2 weeks ago. They took the seton out so I'm worried the wound might close up again and the abscess might get trapped inside which would need another surgery. I still feel pain from time to time, although the sitz bath do help a lot.

My doctors wanted to put me on Remicade but I was getting better so they hold it off then I got bad again so they will observe before they reconsider it.

I've been on medical leave for months now because my doctors told me stress could slow down the healing which left me to the decision of quitting my job. It's a bit sad but I need to prioritize my health and the pain is just far too traumatic. It's worse than my UC flare ups itself.

If any of you had this before, could you tell me how long before your fistula completely healed? Also what did you take or do? I was on flagyl for a long time, now on my last dose of Ciprobay and my UC maintenance Salofalk, and as need Arcoxia - which isn't good for my colon.

Thanks in advance for your help.
Posted 2/3/2014 11:48 PM (GMT 0)
YES! I had a fistula from my small intestines to my abdominal wall. It was there for about 2 years. It closed (like you said) with the abscess inside and I had about 5 surgeries at different times to open it and drain it. The key it that it must heal from the inside out. I had to pack my hole. I say hole because each time they opened it the hole was about 4 inches deep and about 3 inches wide.

I tried Remicaide and it did make it smaller, but it did not close it up completely. I was sure I would have it the rest of my life - I had come to terms of how to live with it because I had it for so long.

Starting 6MP really helped me too.
Posted 2/4/2014 4:18 AM (GMT 0)
I'm sorry I wasn't specific. Mine was a perianal fistula which I'm hoping is less bad. It's so painful I don't wish to be able to live with this for the rest of my life. Although my doctors did say it could take a while to heal so I need to be patient. It's been 4 months now.

I am glad though that you're able to live your life with that, I know it's not easy.
Posted 2/4/2014 8:03 PM (GMT 0)
I had two massive rectal fistulas in 2007 when I was diagnosed with CD in the colon.  GI wanted to turn off my immune system with remicade saying nothing else will heal fistulas as large as I had. 

 I decided against remicade.  After some research, I went on the SCD diet.  I followed the diet with fanatical dedication  and in 7 months both fistulas were completely healed, and all my other symptoms of CD like white mucus and blood in the BMs were gone.  That was in 2007, and to this day, I have not had a single flare or a fistula or any other problem from my CD, and I still follow the scd diet, but not as fanatical as before.  The only drug I ever took was pentassa which I am still taking.

I suggest reading the book "breaking the vicious cycle"  you have nothing to loose and all to gain.

Posted 2/5/2014 9:03 AM (GMT 0)
Thank you. I just downloaded the ebook version of Breaking the vicious cycle and Recipe for specific carbohydrate diet by Raman Prasad. I find the latter recipe much easier to follow.

I hope this works cos I'm not doing too good lately. Thanks again!
Posted 2/7/2014 8:00 PM (GMT 0)
The SCD diet seems to work best for problems in the colon and large instestine and less with problems in the small intestines and illium.   The secret to this diet is 100% dedication and no cheating.  Also you have to eat home made yogurt that has been fermented 24 hours to replinish your gut with good bacteria.  You can't eat store yogurt because most have sugar added and they are not fermented long enough to get rid of all the lactose.

Don't get frustrated if you don't see changes right away. This diet takes time. I was on it 4 months before I started to see changes in my fistulas.  Good luck. 

Posted 2/7/2014 9:45 PM (GMT 0)
Remi is also supposed to be the best for healing fistulas. :) I hope that SCD works for you!
✚ New Topic ✚ Reply