Fistula, abscess, fissures

[Journey]

New to the forum, this is my first post. A few months back, I discovered
a perianal abscess. After a couple months, it formed into a perianal
fistula which now seeps pus on a continual basis. Was also diagnosed
with two fissures (ignored the small amount of bright red blood on toilet paper.)
Surgeon wanted to do colonoscopy to rule out
Crohns but I disagreed. Finally saw one of the top surgeons in the U.S.
and he stated colonoscopy was not needed as it does not appear
to be Crohns, colitis, celiac or anything else.

But before seeing him I had a battery of tests done (after researching
the topic and demanding the tests myself.) I should also add that for
years, I have had intermittant diarrhea but NO abdominal pain.

When I do get the diarrhea, it is often just soft stools, one to three times per day
but there were a few times where it was voluminous and watery. A few times
it has lasted two to three weeks, once as long as six weeks. Some of the time
the stool during my bouts of diarrhea are foul smelling but recently they are not.
Currently I'm having well formed stools, twice a day but last month I had 10 days
in a row of watery diarrhea every morning. From January 1st till today, I would say
22 to 24 days were either soft stools or watery. The rest was mostly well formed
stools but some were pellets that were not soft.

Basically, I'm wondering if anyone on this board reading this has Crohn's
with a normal blood sed rate (zero to 10.) My SED rate was 10. Also, normal
hemoglobin and hematocrit levels. And c-reactive protein (mine was 1.0)
Three physicians stated its almost impossible and one stated I don't look
like I have Crohns because I look too healthy. Only having met one person
with Crohns in my life, I was not sure what that meant. My fecal occult blood test
was normal and also tested for parasite, c.diff - all ok.

Also, how many of you have had recurring perianal abscesses that have come
for years?

Probably dIBS and not IBD but want to make sure.

 

[Astra]

Hi Journey
and welcome

Can I just say, WTF? You look too healthy to have Crohns? What, do we now have a label, a look, are we a stereotype? What crap! (no pun intended)
Anyway welcome!
Sorry can't help with abcesses but plenty of people on here will help you.
I really think you should push for a scope tho to get a firm dx, cos blood work can come back normal.
good luck
xx

 

[Dustin]

Hi Journey, and welcome. I have had perianal abscesses off and on for a few years. I am not 100% sure, but I don't think IBS is related to perianal abscesses - if it is, this is the first I have heard of it.

As for the "look of having Crohn's" I went into the hospital one time to get my Remicade infusion, and one of the other people in there to get his shot asked me why I was getting Remicade. When I told him I had Crohn's, he looked at me with a shocked face, and said "I don't believe it... I thought everyone with Crohn's was a skinny beanpole like me!". Apparently he thought there is a Crohn's look too!

 

[Cookie]

Hi Journey...welcome. Let me second that "WTF????" I am floored that you would have perianal abscesses and a doctor would tell you that a colonoscopy is not necessary because it doesn't appear to be crohn's. I have had multiple recurring fistulas/abscesses and your bowel patterns also are fairly similar sounding to mine. Prior to my initial diagnosis I had several months with severe diarrhea, but I never lost a large amount of weight and I don't think I have EVER "appeared to be sick"! That is the dumbest thing I have ever heard...really!. I was diagnosed with CD 8 years ago through colonoscopy and it has been confirmed through biopsies and bloodwork. However, there are many people on here that have confirmed crohn's diagnoses and have never had abnormal blood work. You should demand that a colonoscopy be done. The first step in getting proper treatment is finding out what's wrong and generally i would say that most people don't get perianal fistulas for no reason at all.

 

[Henry01119]

I have a fistula right now and am waiting for a colonsopy journey best to get it checked out.

 

[PeninsulaLil]

I vote for the colonoscopy. Was the only sure way to know for me. 18 months of diarrhea, abdominal pain, fatigue, etc. with normal blood work. It's not that bad if you're scared of having one. For one thing you are 'out'; I didn't remember a thing. (As opposed to the 'unmedicated' sigmoidoscopy of which I remember every inch!) And getting the diagnosis meant starting to get the right treatments.

Good luck and keep asking questions here. People are great!

Lilly

 

[Hedgehog]

Hi Journey,
Agree with what others have said. I had normal blood work and many other normal results from tests yet still had Crohn's. I think having diarrhoea as you describe is a bit suspicious...
And I have at times looked very skinny but not necessarily unwell. And I've been poorly and of normal weight and looked very well.
In fact it's one of the annoying things about this disease that you can look well but feel like crap. I'm a cumudgeonly old bag at times but sometimes I'm grumpy because I feel really poorly not because I'm annoyed at something. And my friends can't always tell the difference! :ylol2:
Hope you get more tests done and find some answers soon,
Gail
x

 

[Journey]

Thanks for the feedback, I appreciate it.

Shadycat: Perianal fistulas, while relatively rare (occurs at a rate of 12.5 per 100,000 individuals in the U.S.) are usually caused by bad luck or 'unknown etiology.' 80% to 90% of people who develop a perianal fistula do not have
Crohns, UC, cancer, tuberculosis (yes, this is a cause), or any other underlying disorder that causes a fistula.

Conversely, only 20% of people with Crohns ever develop a fistula. So 80% of Crohns patients never get one! Be very glad as
this is a big pain in the ass and the surgery can be extremely complicated (depending on the path it tracts.)

It starts out as a perianal abscess which starts from a blocked anal gland.
(According to the cryptoglandular theory.)
An infected fissure can cause abscesses (which in turn develop into a fistula
35% to 67% of the time.)

Dustin: Like with fistulas, most perianal abscesses occur in people with no underlying disease. People with CD do have a higher incidence of these so colorectal surgeons or ER docs should check for other symptoms for Crohns when they see a perianal abscess. Regarding IBS, the official stance is that there are no complications with IBS but this is inaccurate. It is well accepted that a major cause of fissures is constipation and diarrhea and that is the exact nature of IBS. So, sooner rathern than later, it will be well accepted and promoted in medicine that people with IBS have higher rates of abscesses than the general population.

The intermittant diarrhea for years is not unusual as 10 to 20% of Americans have IBS. If you accept that 10% have it, this is as much as 30,000,000 people. So 15 million people having excessive diarrhea (the rest with constipation or alternating) - do all these people need to be scoped? GI specialists earn 30% of their income from people with IBS.

I'm not entirely opposed to it - I have to get one eventually. I prefer not to get it. I saw one of the top colon rectal surgeons in the universe - I paid cash out of pocket as he did not accept insurance and he said it was not needed, without me saying I do not want one. The diarrhea goes so far back that if it was Crohns that would mean it presented at least 10 to 12 yrs ago (I'm 34m) with no other symptoms. (And 80% of the time my stools are formed.) So no abdominal pain, no anemia, no elevated crp, and blood sed rate of 10. If it was cancer, I'd already be dead.

And I THINK if it was Crohns or UC, I'd have other symptoms in addition to the diarrhea.

I know from statistics (my education is in epidemiology, nutrition) that most people with Crohns do have blood in their stool as some point. Most meaning above 50%.

It is unusual that people posted here and NO ONE had elevated crp, blood SED, or positive fecal occult blood test as it is not typical. I'm trying to find a handful who can say no elevated blood sed, no elevated crp, no anemia, no blood in stool, no abdominal pain, no fever, etc. This would prevent me from spending the outrageous
amount of money on being scoped, from the risk of perforation (17 out of 39,000 get perforated and 3 die within days), the day of prep, the day of being sedated, risk of being allergic to anesthetic pharmacological, etc, etc. If I can figured it out by other less invasive, less expensive tests, I'd prefer to try this route first.

I know to some people I sound like I am in denial. I'm not - I went through a period where I accepted the fact that I may have CD. This was after the first colorectal surgeon suggested he has to rule out CD before he proceeds with fistula surgery but even he said it is unlikely as I've never had abdominal pain and most people with abscesses/fistulas have no disease.

The journey continues though and you all have provided me with the motivation to do further research. My second round of bloodwork was done today so I get more info. soon.

 

[Journey]

Astra: You look very healthy by the way!

 

[Astra]

Astra: You look very healthy by the way!

Ha Ha, I found that photo on ebay, don't know who she is!! :lol:

Well, I try my best, and my best is good enough!

 

[btpingrey]

I had normal blood work and I am by no means skinny. I also take multi-vitamins, so that could help with anemia and other things; however, I do have chronic abdominal pain and blood/mucus on stool (which is usually formed or soft). Unfortuantely I can't get the one symptom which I could use - weight loss.