Do all IBD sufferers experience fistulas and Abscesses

[Daunting]

HI.

I was just wondering if Crohns sufferers all experience fistulas and abscesses. How many of you have had any, and have not had any. I this something that occurs over time? And what can we do to prevent this from happening if there is something we can do?

 

[DustyKat]

Both of my children have had fistulas and abscesses, I did edit the poll to reflect that.

There are different types and Crohn's and some people are more than others. Some will have more of a sricturing type disease and others more of a tendency to fistulise. Location also plays a role, disease is the ileum often has fistula and abscess development as a complication.

Since Crohn's can affect all layers of the bowel I personally believe that anyone, regardless of disease type and location, could have the potential to develop these complications if inflammation is not kept in check over long periods of time.

I think the key to keeping these complications at bay is keeping your disease in check. However for some people I think these complications can still develop even though all is being done to prevent just such occurrences when flaring. Of course remission is the ultimate prevention!

Just my two cents worth, :wink:
Dusty. xxx

 

[xX_LittleMissValentine_Xx]

I agree with what dusty has said. In my case I think my fistulas and abscesses have formed due to lack of control of the disease. However, they have kinda been a silent symptom. I have mostly felt well over the last few years, but I have only been on a very low dose of azathioprine so I just don't think it was enough to keep it at bay. on top of that my doctors weren't quick enough to do a scan at the first signs of a fistula so everyone said it was nothing to worry about. Two years later I have still not had them treated and I'm worried at how they have developed and branched since then. Since being admitted to hospital through an emergency with an abscess everyone is suddenly taking me seriously and now I suddenly seem to be in for several months of operations and changes in meds.
This is a difficult disease to control!

 

[KWalker]

I had an abscess that was left for a few years until it got to the point where surgery was the only option. I had surgery and spent 6 days in the hospital, and then as I was healing at home I was a mishap with my nurses that actually caused more damage and I needed a second surgery for the same abscess. That was back in November/December of 2011 and I'm still healing from it today. I haven't had any fistulas though.

 

[chrisnsteph1022]

Nope. I've had CD for 9 years, two major year-long flares. Never had an abscess or fistula.

 

[Daunting]

Thanks everyone.

I think with this disease I am more scared of all the possible surgeries and was hoping there was a way to prevent the fistulas and strictures. I know now it doesn't happen to everyone. But knowing what you are up against sometimes helps.

 

[David]

Daunting, I agree with the above folks who said properly treating the disease and keeping inflammation in check is one of the big keys. Here's what sometimes happens:

1. Inflammation isn't properly controlled. This is especially problematic in the small intestine.
2. That chronic inflammation leads to scarring which, along with additional inflammation causes the bowel to narrow (stricture).
3. Pressure builds up on the proximal (end closer to the mouth) end of the stricture. This can increase the chances of a fistula.

Keeping the inflammation in check and helping your intestinal mucosa heal is absolutely imperative. Sometimes we have to educate ourselves so we can become our own advocates to ensure that we receive the treatment and care to make that happen.

 

[KWalker]

I think its also important to keep in mind that you can definitely still get an abscess and/or fistula WITHOUT having crohns. With abscesses, you can get them just about anywhere on your body. Surgery for my abscess was the only surgery I've had for crohns and although it wasn't fun, there is much worse that could happen for crohns.


Are you worried you might have something going on? Don't hesitate to make a post if you see/feel something unusual

 

[Nyx]

I've had 2 abscesses (one in my butt cheek, and one right beside my stoma) and I have a recto-vaginal fistula as well. The abscesses weren't that bad, and didn't require any surgery and the fistula doesn't bother me now that my rectum isn't attached to anything...lol

 

[DougUte]

I have had both structuring disease and fistula. Its not fun.

 

[pb]

I've had CD for 21 yrs now with no full remission the entire time...I do have issues with perianal crohn's skin tags, but to date have never had a fistula or abcess and my CD has flared the entire 21 yrs in my colon, which usually makes it common for fistula issues so although I've had a tough bout with the perianal crohn's skin tags, I'm lucky that I've never had a single fistula considering there's been constant inflammation in my colon for 2 decades.

Researchers have found specific clusters of genes related to IBD that predict the severity and behavior of the disease over time and this is one major reason why IBD is so individual for all of us.

 

[Homebound]

Yes, I've had both a rectal abscess that turned in to a fistula. Had it fixed by fistulotomy. Now this was before I was properly diagnosed. So could be very true that it happens more often when the disease is left to fester in there. Not something I'd like to go through again!

 

[Chimpur]

I had an abscess about 5 years ago. It was on the inner butt cheek to the right. Was quite painful and everything. Was sent to emergency by my family doctor to get it lanced. This was about 4.5 years before my diagnosis with crohns. Anyways it was quite disgusting. And I had to take sitz baths for a week or so to ease the pain.

It still feels a little hard... N it gets inflamed a wee bit when I have a real bad crohns bout. I don't think it weeps anymore. Hard to tell with other stuff coming out when I have a flare. Sorry if this was gross or kinda graphic!

 

[Grumbletum]

I read that 1 in 4 people with Crohns, especially in the small bowel, will suffer from an abscess and/or fistula at some point. I had an abscess and bowel to bladder fistula, but was lucky to get them cleared up without surgery. Keeping inflammation under control and knowing the signs I agree are key. And not putting off going to the docs cos ' it might be nothing.'

 

[Bld]

I have CD in my large bowel. I've never had an abscess or a fistula. I do have a large fissure though.

 

[xX_LittleMissValentine_Xx]

Daunting - I don't think you should worry about every possible outcome of crohn's until you are faced with it. There are many things that could happen to you throughout your journey with the disease and I don't think anyone can come to terms with all that. There is no point in worrying yourself over things that may not even happen.
Take it one day at a time, worry about having an abscess or a fistula if and when it happens. In the meantime just control your disease as well as you can. The thought of having surgery is worrying, but many people can go a long time without having any surgery.

 

[Amy (worrywart)]

Hey I just thought I'd jump in ",)
I had crohns 10 years fairly well under control apart from a few minor flares in the terminal ileum :-( I developed my 1st anal abcess just before a family trip to euro Disney and never even connected it to my crohns !!!
Silly I know but I assumed I was doing ok keeping it at bay,
Anyhow 2 years on and 3 setons later I'm back for my next EUA on Tuesday for the Botox procedure on a chronic fissure and possible seton ;-(
I've a pain in my ass literally dealing without now , but I try to solider on regardless and I know I've gone through little compared to others !!
Never the less I think we all have to fight a battle but I'm determinedtoget control of my butt again hehe xox
Sorry for the rant
Huge hugs to u all from a rainy Ireland <3