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Need help with Crohn's and Fistula

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Crohn's Disease
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Posted 1/4/2016 4:03 PM (GMT 0)
Hi all, I am need of urgent help, i have read so many threads and unable to find and answer for my situation.
I was diagnosed with Crohns in November 2014, and at that time i had a small abscess in my rectal area. My Dr. Recommended Humira, which i refused to take at that time, i changed my lifestyle completely and my symptoms for Crohn's (diarrhea, 7-8 stools a day) looked they got better in 6 months or so, now i go only 1-2 times a day with formed and semi formed stool. The problem is that the small abscess got bigger since november 2014, i went to a colo rectal surgeon and they drained it twice, while they drained the first one twice, i found another small one growing right next to the first one, when i went third time they inserted a seaton through my abscess, they said i have a fistula, they seaton broke after one month, which was June 2015. since that day my abscess is draining with out a seaton, i can feel two openings one on the top and one on the bottom of the abscess from where its draining, sometimes it goes bigger when i eat carbohydrate related foods, it takes about 16 hours for it to get small, by draining the puss itself during normal daily routine. I might start Humira now, however i want to ask, if my abscess is draining it self, do i need to get another seaton? My first seaton experience was not that well, i still have a bump where they inserted the seaton and its very painful when i touch it like a scar inside. My surgeon wants me to get another seaton, however as far as i know seaton normally put in to drain the abscess and keep the fistula open. So if my abscess is still draining heavily, do i really need a seaton?

My surgery is scheduled in the week of January 13 2016, so i need to make a decision before that.

Any one please if they have thought about it.

Please advise.

Thank you and good luck to all.
Posted 1/4/2016 4:33 PM (GMT 0)
Sorry you are dealing with this, there's nothing fun about it. I also had my abscess recur 2 days after eating complex carbohydrates but thought maybe it was just a coincidence. I hadn't eaten complex carbs in months.

The issue becomes this...when the abscess grows bigger, the infection grows in different directions, possibly making the fistula more complex. We all have difficult choices to make, but if I had multiple abscesses and fistulas, I'd be on a biologic. So far, just one for me and they say it's not Crohn's, but a little "gift" from ulcerative colitis flaring. We'll see. I had fistulotomy, not a seton. It was no picnic either.

These things really hurt your quality of life. Remicade has the best track record for healing fistulas in Crohn's. CCFA website has some statistics regarding Remicade/surgery for fistulas. My advice is to delay surgery a few weeks if you are not sure. Better to go in with your mind fully made up than to second-guess yourself after the fact. Best of luck to you.
Posted 1/4/2016 5:05 PM (GMT 0)
Hi Charlie, thank you for the detailed information, i really want to delay my surgery, but my surgeon's practice is really painful when we have to reschedule. whats bugging me most if, if the purpose of seaton is to keep draining the abscess, then why do i need one, and why they are kinda forcing me to have one, while my abscess is still draining. My GI is like abscess is surgeons department so he never even looked at it.

I started SCD a month ago, but i dont think i can even take non complex carbs as they trigger my abscess, so i am bassically eating just protein and steamed veggies, they seemed to help, reduced my abscess quite a bit, but since i can't even take simple carbs, i dont think i can survive much, and thats why i decided to go the Humira route.

And now i was just not sure, should i get the seaton placed before i start humira, knowing that my abscess is still draining.

When you had your fistulotomy, was your abscess draining? if you remember.

Thank you again for your help, if anyone else also has a comment then please advise.

Thanks
Posted 1/4/2016 6:37 PM (GMT 0)
A seton is used to drain, but its primary purpose is to keep the fistula open so that it can drain. The last thing you want is the skin to heal on the outside but still exist on the inside with nowhere to drain. That will just make abscesses re-form and then burst. If it bursts on the inside, you will go septic and could get very sick, very quickly. I almost died when it happened to me about two years ago. I had two IVs with 5 different antibiotics going into me at once for a week, then was on IV antibiotics for about a month afterwards. This brought my c. diff. back, which caused a flare, then my pancreatitis flared up again....it was a nightmare. The seton would keep all of that at bay.

I currently have a fistula that does not have a seton, but that is because I had the seton in it for several years. We took it out to try to heal it with Remicade, but I kept getting c. diff. and it couldn't heal. We put the seton back in and took it out a year later to try a plug surgery, but by that point, the skin had all healed like a pierced ear would, so it won't close at all. I keep an eye out for signs that it's closed, it's been out for a year and a half, and I haven't had any problems with it.

Humira is a good route to go. The biologics seem to be the most effective for helping fistulae and abscesses to heal.
Posted 1/4/2016 7:37 PM (GMT 0)
Thank you scifigal for your response, you gave me good understanding on whats going on inside.

I hope your fistula healed up this time and never come back.

I will keep an eye on my skin in that area, currently i see two tunnels kinda openings, which are no where close to seal anytime soon.

I guess i will call of the surgery and start humira, see what happens, if things get better then good, otherwise, will schedule seaton placement.

I tried to manage the pain for almost a year now, i think i can still, but just scared what if this get mutate and become something else.

Thank you and good luck
Posted 1/4/2016 8:29 PM (GMT 0)
I developed a recto-vaginal fistula with my crohn's colitis (cd affecting the colon) and my GI told me to choose between Remicade or Humira (in 2014) he said they work the same, only difference is Remicade is made with a mouse protein and Humira with a human protein so I chose Humira mostly for convenience and with Humira you don't have to take another type of med to help reduce risk of developing antibodies, with Humira it's not an issue and that's the other reason I chose Humira because I'm allergic or unresponsive to oral meds used for IBD. It cleared my fistula up fairly quickly, I never had any abscess with my fistula.
Posted 1/5/2016 2:07 PM (GMT 0)
Hi pb4,
This is really good information, I will keep in mind when i see my GI tomorrow, lets see which medication he wants me to start.

I will pray for your IBS D/C to stay in in normal range not to much D or C.

Thank you
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