Shot in the dark: Crohns & Pilonidal Cyst

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Aimee =)
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Date Joined Jun 2004
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   Posted 9/4/2009 6:56 PM (GMT -7)   
My GI is not convinced, but *I* am convinced that my recurring issues with pilonidal cysts is connected to my Crohn's disease.
 
First of all, I had these cysts before my diagnosis - had surgery to remove them, the worst experience of my life, never healed from the surgery and THAT is what got the Crohns diagnosis. Within 2 weeks of my first Remicade infusion, the wound healed.
 
Three years ago, I flared big time and a pilonidal cyst returned. Was hospitalized for my flare and the mixture of steroids and antibiotics healed the cyst.
 
A few months ago, I started to flare again. I knew it was coming as - you guessed it - darn cyst returned. 21 day course of Levaquin healed it up. I just started on Cimzia two weeks ago and the darn cyst is back again. The use of the antibiotics is troubling to me but functioning with the cyst is nearly impossible. Plus it's painful.
 
*I* think they are connected somehow, as the cyst comes as soon as I flare and tends to heal when my Crohns heals. Has anyone else ever had a pilonidal cyst or heard of any connection between the two? Or might it have something to do with my immune system freaking out during a flare and the cyst coming back? It really just adds insult to injury now to deal with two issues.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/4/2009 7:42 PM (GMT -7)   
You can have issues with pilonidal cysts without having CD so maybe that's why your GI doesn't think they're related to one another....basically you don't have to have CD in order to get pilondial cysts. My hubby has no IBD issues but once had a pilonidal cyst on the end of his tailbone (basically right at the top of his butt crack.

Is it for sure pilonidal that you have or could it be an abcess/fistula?

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Aimee =)
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Date Joined Jun 2004
Total Posts : 1020
   Posted 9/5/2009 12:16 PM (GMT -7)   
pb4 said...
You can have issues with pilonidal cysts without having CD so maybe that's why your GI doesn't think they're related to one another....basically you don't have to have CD in order to get pilondial cysts. My hubby has no IBD issues but once had a pilonidal cyst on the end of his tailbone (basically right at the top of his butt crack.

Is it for sure pilonidal that you have or could it be an abcess/fistula?

:)

Oh yes, I'm very familiar with them. They run in the family - my dad and my brother have been blessed to deal with them, too. They both had the surgery as well and haven't had any issues since, while I continue to. Neither of them have IBD.
 
We did find a fistula that connected to one of the cysts at one point but most of the time they don't. It's been looked at my various GIs, surgeons, and PCPs and they all confirm it's a pilonidal.

Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 9/5/2009 12:35 PM (GMT -7)   
I have one that I was born with, or at least that is what the doctors told my mother it was. It has never caused any issues, never "flared" just always been at the top of my butt crack. So, I'm not really sure I've helped you any. I never really gave it any thought as far as being connected to my CD since it was there when I was born and I wasn't diagnosed until I was 23. But who knows since this disease clearly runs in my family I wouldn't rule it out.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


scifigal2k
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Date Joined May 2012
Total Posts : 2649
   Posted 2/19/2016 1:24 PM (GMT -7)   
I am bumping this up to the top (I know it's an old thread, but pb4 is still around!). :)

I've been having about 6 BMs/day, mostly loose. Waiting for stool sample results to come back because budesonide isn't helping tons. But the last couple of days whenever I have a BM that requires me to put any pressure to get it out, I get a sharp pain about an inch above the crack. Since I've had abscesses before, that's what my mind has jumped to. Is it even possible to get them back there? There is no lump, discoloration, etc.
CD, gastroparesis, fibro, arthritis, GERD

Meds: Remicade

"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/19/2016 4:40 PM (GMT -7)   
Oh I don't know scifigal, I guess it could be possible but that's generally the area that plonidal cysts are bothersome....you should mention this to your GI though, I'd be leery to just let it be and see if it gets worse.
DX with Crohn's Disease in 1991 shortly after becoming ill. CD was affecting small and large bowel & anus (perianal crohn's skin tags) & rectum for first 2 yrs of becoming sick, CD remained constant in colon (Crohn's colitis) & anus with anal tags, intolerant to oral meds. Currently on Humira (Feb 2014) once a week and B12, Vitamin A and Omega's daily. In remission but trying to combat IBS D/C.

minnietoty
Veteran Member


Date Joined Dec 2010
Total Posts : 2425
   Posted 2/19/2016 6:24 PM (GMT -7)   
Scifigal, can't this pain be caused by proctitis. I have pain where you describe a lot of times when I have a bm and I have confirmed chronic proctitis.
GERD, gastritis, perianal fistula, ileitis, chronic proctitis, IBS and persistent mouth ulcers and fissures
Meds: Remicade , Pentasa sachets, Pentasa supp, Entocort 3 mg,, Nexium , Imuran, Baclofen, Famotidine ,Gaviscon, Calcium supplement, multivitamin, B shots, vit. D, colifoam
Pred 40 mg from Oct. 2010 till Jan.2012
Failed:Azathioprine (generic), Methotrexate

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 2649
   Posted 2/19/2016 7:01 PM (GMT -7)   
Thanks @pb4. Unfortunately, my GI's office didn't call me back today, so I will have to wait until Monday. If the pain gets worse, or if a lump or sore forms, I'll go to the ER. I am a little paranoid now about abscesses since the last one went septic less than 36 hours after the lump formed. Being pregnant has me doubly worried about major things like that!
CD, gastroparesis, fibro, arthritis, GERD

Meds: Remicade

"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor
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