Periananal Fistula and Doc says 90% sure of Crohns

[crohner]

HI,

After having pain in the rectal area(which I initially thought as piles) for a few months I visited the doctor. We did a colonoscopy during which the doc observed "mild to moderate inflammation of the terminal ileum. Ulcerations friable and contact bleeding". A perianal fistula was also observed which had an opening just outside the rectal area and was draining. The doc did a biopsy after the colonoscopy which came out negative and told me to get a IBD panel blood test done.

The ASCA antibodies came out high but all others were normal. MY doctor asked me to undergo surgey for the fistula and said that I had 90% Crohns but could not diagnose me 100% because the biopsy came out negative.

He also told me that the usual first line of action medicines which were used in the past have been found to be ineffective and hence suggested that I do not take any medication for now as I was not experiencing any symptoms. He gave me an appointment for six months later.

I have been to the surgeon who found the opening of the fistula in the rectal area. HOwever, I developed another abcess near the tailbone as well which also drains(He said this could be another fistula or a pilonoidal cyst). HE wanted to do a biopsy of the rectal area to check for Crohns(as my GI did not do a biopsy of the rectal area). So he did flex sigmoidoscopy last week and waiting for results. He also asked me to get PPD(TB skin test) done.


MY question is
1> What are the chances that I have Crohns or will get Crohn's based on above findings?
2> Is the GI right in saying that we should not do anything about the inflammation(Crohn's or otherwise) in the ileum?
3> I read that inflammation of the ileum is also caused by bacteria(food contamination) as well as in Intestinal TB. However, the doctor has not asked for doing any stool test for the bacteria. Is this normal?

 

[TheyCallMeRC]

From two things you have stated which is fistulas and inflammation at the terminal ileum it sure does sound like Crohns. Crohns can affect different areas and everyone can have a lot of different symptoms.

Your GI is right in wanting to make sure it is crohns for the reason that different meds. are used depending on if it is crohns or colitis. However, I would really think he could tell this with the colonoscopy. Just because your doctor is a GI doesn't mean that he is very famillier with Crohns. I know it sucks to have all these tests done, but you may want to do some research and maybe find another GI that may have more experience with it. They may can also get your test results that you have already had done and make a diagnosis from that.

I am not a doctor, just a 17 year old veteran with crohns (LOL). There are a lot of conditions that can happen in your intestines that can mimic all kinds of stuff, but like I said, the fistulas and inflammation certainly point to crohns. I went to approx. 10 different doctors in the year before I was finally diagnosed and was treated for parasites, food poisining and all kinds of other stuff so I know how aggravating it can be in the position you are now. I do think maybe getting a second opinion would be a good idea and your more reputable doctors will have a good bio. on their website that will state what areas they specialize in.

I almost forgot, along with using your search engine to find a doctor, they have a good doctor directory here on the forum that you can use. http://www.crohnsforum.com/doctor/

Good luck with everything and I hope you find out something soon so they can start treating you. Glad to have you on the forum.

 

[PattyLynn]

RC has offered some fantastic advice. Don't be afraid of hurting your GI's feelings by getting a second opinion. You need to find out asap what is going on so you can start feeling better. Good luck. Keep us posted. And welcome!!

 

[David]

Hi there and welcome to the community

The negative biopsy is interesting. Did you get a copy of it? If so, what did it specifically say? The pathologist could have gotten it wrong, but more likely, it was right. So that makes us wonder what else could cause the fistula?

I'm glad they're checking for TB. Have they also ruled out chlamydia, syphilis and gonorrhea? Have you had any sort of radiation exposure including CT scans? And of course trauma can cause it as well.

Again, welcome to the community!

 

[crohner]

thanks for the advice guys.

David, yes I have the biopsy report. This is what it says

Microscopic diagnosis:
- Mild acute ileitis with surface erosions
- no granulomata identified

The thing which gives me hope that I dont have Crohn's is that I do not have any symptoms associated with Crohns such as abdominal pain or diaharrhea or loss of weight. I did have diahharea for 6-7 days(watery stool at max once a day) in Feb. I took Nutrolin B Plus capsules for a couple of days and it passed off.

I did the TB test (PPD) at the heath dept and it came out absolutely negative.

I do not think I will have gonorrhea or syphilllis as I never had sex.

I did have a CT scan or MRI scan done sometime in July 2011 because I was having hedache(this was work related stress).

I phoned my GI and asked him if we should do any other tests for bacteria but he said that I have Crohn's and we should first get the fistula surgery done. But at the same time he says that he doesn't want to start me on any medication because I dont have symptoms and the biopsy doesn't show active Crohn's.

I am going to get the results of the second biopsy of the rectal region done by the surgeon on Monday. Hoping for the best.

Also, the perianal fistula which I have is no longer draining since a month. However, the abcess/fistula close to the tailbone just as the buttock cheek starts is draining puss. Surgeon says this might be another fistula or pilonoidal cyst. Has anyone had fistula near the tailbone?

 

[David]

So...

1. You have Crohn's
2. You don't have active Crohn's (according to the biopsy) so he's not starting you on meds.
3. You have fistulae and abscesses.
4. You have ileal inflammation and erosion.

*scratches head*

I'm not sure I follow the GI's reasoning but I'm no GI.

Have they done a capsule endoscopy to make sure there isn't active disease higher up?

I'm not sure about the tailbone/fistula thing. I'd start a new thread in our fistula forum and see if anyone has had one.

 

[crohner]

Exactly what is going through my mind David. I am thinking of getting a second opinion soon.

 

[Thermo]

I have a feeling the doctor might be thinking its too late for medication and the only recourse is surgery. I am a huge supporter of Humira to fight fistuals but it will take awhile and from your descriptions your fistuals don't have much time before they become serious. When you start any of the medications that could help you with the fistulas you will have to stop taking them right before surgery anyways as they don't let your body heal quickly. If your doctor says after surgery not to start on medication I would raise the red flag as if you do have fisutalting Crohns disease you stand a 50-70% chance of getting more fistulas immediately after surgery if left untreated. I would recommend talking with your doctor and ask him to explain himself I guarantee he is holding something back as most of them don't want to scare you, my doctor loves doing this to me as he knows I have anxiety problems lol

 

[crohner]

I went to the doc yest for my results of the flex sigmodidoscopy(in this procedure only the rectal region and lower colon are examined as opposed to entire colon and ileum in a colonoscopy). The biopsy results were as follows

The biopsies indicated that there is very mild inflammation in the rectum and part of the lower colon consistent with mild IBD. The doc also told me that this was not visually discernible but histological findings showed slight inflammation.

He said that I cannot be started on any meds for now since I do not have any symptoms such as stomach pain/diarrhea etc.

He also examined the perianal fistula and said that the earlier one seems to have closed. The other abcess/fistula near the tailbone is draining. He tried to probe it but it was too painful without anaesthesia. He asked me to just wait for a month or so and see if it heals by itself. If it doesn't or if the fistula which closed opens again then he said that we could do surgery for both at the same time.

 

[David]

He said that I cannot be started on any meds for now since I do not have any symptoms such as stomach pain/diarrhea etc.

"You have Crohn's Disease but we have to wait for it to get bad before we give you medication. Fistulae? Nah, those aren't bad."

I see. Fistulizing Crohn's Disease that isn't medicated? Don't worry, it won't be long before it gets bad enough that he gives you medication. Of course, maybe then they can just wait for it to get so bad that they can do surgery instead of give you medication. You don't really want all those intestines anyway, right?

I'd strongly suggest a second opinion.

 

[PattyLynn]

So, the fistula was too painful for him to probe but you are supposed to live with it for at least another month? Interesting treatment strategy. And perhaps, he may be right. I mean if you don't have any stomach pain or diarrhea, then you couldn't possibly have Crohn's! Honestly, who has ever heard of fistulae being a symptom of Crohn's anyway?? No one! Well, except for every person on this forum who has ever had a fistula caused by Crohn's (me included!)

Please, please, please go see a GI who actually graduated from medical school!!

 

[crohner]

Hey Guys...I am considering a second( or should I say third opinion after the GI and surgeon gave exactly the same verdict.) The reason teh surgeon asked me to wait for a month is because the fistula doesn't really cause any discomfort in day-day life. Except that probing it was too painful. I am not even sure if it is a fistula or abcess. Anyway, I am considering another opinion. Does any of you know any good GI in the St Petersburg, Fl area? I mean someone has gone to and had success with.

Also did any of you have to undergo a stool test? I have not been asked to get one done which I find surprising since this is usually the first thing they ask to check. Could it be because I never went to a family practitioner and instead went directly to the GI?

 

[David]

We have seven highly member rated doctors in the Florida area. I'm not sure how close they are to you.

 

[PattyLynn]

Also did any of you have to undergo a stool test? I have not been asked to get one done which I find surprising since this is usually the first thing they ask to check. Could it be because I never went to a family practitioner and instead went directly to the GI?

Twenty-plus years ago when I was first having gut issues, I went to see my family doctor who immediately referred me to a GI. That's how they do it in Canada - you see your GP first so he/she can charge for your visit and basically they just send you to someone who knows more than they do! Don't get me wrong, I love my GP but it is a bit of a money grab. Anyway, the first thing the GI did was ask for a stool sample (actually, a week's worth of stool samples - nasty!!) He did this to rule out parasites, etc. The stool sample wasn't used to diagnose the Crohn's, only to rule out what I didn't have. It took several more months and several more tests before I received the Crohn's dx. BTW, this GI - the one who first diagnosed me - turned out to be an idiot :quack: and I actually filed a complaint against him with the College of Physicians and Surgeons so I applaud you for doing your research and looking for a GI that is highly recommended by others. The GI I have been with for the past 12 years is just fantastic - I wish I had found him 22 years ago!

Good luck with the search and keep us posted on your progress.

 

[Thermo]

After your last posts I am in full agreement, it's time to see another GI doctor, if he is not willing to put you on medication after surgery he is crazy. The stats on fistulating Crohns disease resurgence after surgery is astronomical between 50-80% within 5 years so left untreated you will have continual issues. I mean he could at least put you on a Sulfa suppository, what is this doctor thinking? It honestly sounds like this doctors from the 90's when they had the bottom up approach to Crohns and worried more about long term patient toxicity due to medication than disease progression. Its been well proven more people beat the odds of medication toxicity than disease progression, which is why they flipped this thinking and good GI's will hit the disease hard with medication at the first symptoms. Good luck but honestly most of us have had to float through several GI doctors before finding one we liked. I have been through 4 in 10 years before I found the one for me.