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Perianal only

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Crohn's Disease
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Perianal only  
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Bummed Crohnee
New Member
Joined : Mar 2014
Posts : 2
Posted 3/22/2014 12:31 AM (GMT -7)
Just wanted to share my experience as this forum has been helpful to me. Hopefully my info can help someone.
Thought I had bad hemorrhoids....man I wish now! Had a fissure that wouldn't heal so ended up having a sphincterotomy last November. Bad idea!!! Should have gotten a second opinion to diagnose why the fissure. Got an infection, started a 10 day dose of cypro & flagil, however things got from bad to worse. It was Christmas time and I learned quick that chocolate was the enemy! I've since learned that without proper diagnosis of Crohn's, antibiotics, gluten/dairy can make the Crohns worse during a flare. Had the absolute most painful burning diarrhea that made my skin raw and had me running to the potty. Had to quit the cypro. My only relief was in the hot bath. I literally would be in there all hrs day & night. Was told to eat more fiber, getting even worse. Was told by dr at the time to drink citrucil which actually helped to bind my stool believe it or not even though it's a fiber supplement. I Finally decided to quit eating on a Monday to avoid pooping and stuck with just jello and went to the Gi. I was scheduled for a colonoscopy that Thursday and got diagnosis of perianal Crohns immediately this past January. I was put on 40 mg of prednisone & Lialda. Things do get better. The dietician says no more than 5 grams of fiber a day & stick to protein, white starchy food w/ no dairy or gluten. Things improve, start to add fiber and wean off prednisone and BAM, I get a fistula right under my tailbone, could hardly walk, and no sitting. I actually sobbed in pain it hurt so bad. I decided I would actually take a look, see, after the surgery, (only good that came from that was the pile was removed) I had so many tags it was a complete train wreck down there. I just didn't even want to see it. I had to look and that's when I discovered the hole left behind from when it ruptured. Puss & blood leaking out. It scared me so bad as at the time, I had no idea what was happening. They could have warned me, especially after the dr said, I wondered if you'd be headed down this path?" It actually ruptured by itself on the outside and once it drained I felt so much relief. Learned I was lucky it found it's own way out! After getting officially diagnosed with this abscess/fistula I realized this was not my first one. I remembered the pain and the feeling of the drainage. It caused severe discomfort & raw skin so this time I used butt paste. Worked wonders!! Had to increase the prednisone again and started Remicade. What a miracle drug!!! I can eat just about everything, sticking to dairy/gluten free. I've had 2 infusions, was told the hole from the fistula would close after the 3rd infusion which isn't scheduled until 4/7 but it's healed already. Only one problem....I'm forming a new one almost in the same spot just a little lower In between my tailbone & rectum. I was under the impression the Remicade was to prevent this, am I mistaken?
I can eat whatever, no immediate bathroom issues. I have no tummy issues at all. Its all perianal area that has inflammation/bleeding/drainage and It's the next day bowel that I discover bleeding and what I like to call "soft serve poop" to wonder if it's the food or if it's the disease. It's literally like a colon cleanse.
I just started eating sugary stuff again so I'm reading some posts that indicate avoiding that.

I also got mouth ulcers and bad adult acne which also turned out to be ulcers that are all cleared up. Only side affects from Remicade so far are minor depression, puffy face & eyelids in morning hours and some headaches.

Post Edited (Bummed Croney) : 3/22/2014 6:06:47 AM (GMT-6)

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HabsHockeyFan
Veteran Member
Joined : Jan 2006
Posts : 3160
Posted 3/24/2014 11:32 AM (GMT -7)
Hi and welcome....I can't tell you much on the Remicade healing fistulas as I have been lucky enough to avoid that so far.  As strange as it sounds, I mostly wanted to say welcome as I meet so few where the rectal issues are the major problem like me.  There are a few others here with similar issues.  Tags and the tearing around them are my worst symptom.  I stick to nothing with more than 3g of fiber so I actually envy your 5g haha!

I am hoping that the fistula you just found was getting started before the Remi and it will be kicked out quickly with further infusions.


Age 45-50, female. Still holding on with just Pentasa and cholestyramine! Doc says most of my problems are side effects of my resection ('90) and my disease is doing GREAT and no sign of a repeat fistula. Meds now to control the lack of TI and gallbladder....happy to be out and about. OOOpppps...first big flare up in 11 years (10/2012) - but still trying to get back to "my normal".
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