Perianal abscess, anal fissures, and perianal fistula

[Journey]

Introduced myself on the introduction board. Long story short,
was diagnosed with perianal abscess, two anal fissures, and a
perianal fistula 2 months ago. First CRS said before he operates
on the fistula, he wants to rule out Crohns with a colonoscopy.
I refused. Got 2nd opinion from one of the best in the field.
He said no need for scoping as it is unlikely anything.


I want to ask anyone reading this who has Crohns disease,
did any of you have NO symptoms at all except intermittant
diarrhea. For as far back as I can recall (maybe 10 to 12 years)
I have had more than usual diarrhea. The majority of the time
I am ok - formed stool, once or twice a day. But I do get bouts
of diarrhea (no abdominal pain and they are controlled.)

So I have had a bunch of bloodwork done.
No anemia (been tested for 12 years)
No blood in stool
Normal fecal occult blood test
Normal SED rate (10)
Normal Crp (1.0)
No abdominal pain
No mucus
No pains anywhere
Nothing else but occasional diarrhea.

Any have just diarrhea before being diagnosed or at the
time of diagnosis? This is without meds. So right at diagnosis
before you took meds.

Anyone?

 

[beth]

The only real way to find out it, whether yay or nay, is a colonoscopy with biopsies.

Personally, and knowing now what I do about this disease, I'd go with the first surgeon.

 

[Nyx]

I'd go for the colonoscopy too, just to be sure. I didn't have many symptoms when I was diagnosed either...just had blood in my stool and weight loss. No D, no pain, no discomfort whatsoever. If I hadn't have fainted, I wouldn't have gone to the ER. Thank goodness I did....but that's another story

Go get the scope...just to be sure...

Good luck

 

[Astra]

Yup
concur
scope is the only way, normal blood work means diddly, especially if there's no inflammation at the present time, and you have fistulas? can you have them and no Crohns? dunno
see the first surgeon and have the scope
good luck
xx

 

[CrohnsHobo]

Agreed, get the scope. Really they are not that bad.

 

[Journey]

Nyx, blood in stool and weight loss are very serious symptoms
Did you faint from being anemic?

Astra: Yes, most people with fistulas do not have CD and thankfully for you guys most people with CD never get a fistula - only 20% do. Check out my other response on my other post where you mentioned being upset at my doctor's comment of, "you look to healthy to have Crohns."
I mentioned on that post that you look healthy!
And so do the others.

From the responses, I'm going to conclude I am ok as no one has said they only exhibited one symptom (diarrhea.)

Even if it was CD, diagnosed today, I would not take meds as I have no pain, no suffering, no problem. Aren't the meds only for people who are in pain or having inflammation? Once that goes away, you wean off the drugs? I don't think anything would change. Continue to exercise, (I always eat well), rarely drink alcohol, do not smoke, etc.

My CDAI index (if I had it, lol) is 25 at the moment and even when the diarrhea is at its worst, it is at 50 to 60.

Sorry to bother you guys as you must get so many people on here with slight problems who wonder if they have Crohns. The only reason I came here is because of the first surgeon discussing it along with a friend who is a doctor who keep urging me to get scoped.

 

[CrohnsHobo]

Even when no pain or D for close to seven years I took meds. Though it was probably those meds that got me better.

I don't get the CDAI thing. I rarely have any of the things the list on that quiz yet I have Crohn's. Even when I am really flaring I really just have D, weight loss and cramping. Never had surgery, don't get fistulas, pg, etc.

 

[beth]

BTW: for about a year I had slightly more than normal diarrhea/BM's/call it what you like. Then I ended up in hospital with a perianal abscess and fistula. After calming things down with the Elemental liquid diet I was down to 1 - 2 - 3 BM's a day tops, pretty asymptomatic. And still 6months later had active inflammation and ulceration through from as far they could get the scope, hey! I saw my appendix from the inside!, to my tail.

Your choice. But knowing what I do now... I'd get the scope.

 

[Astra]

I'm with Beth & Chris on this one

All I can say is, ignore this 'no pain' inflammation, and you'll know about it years from now,
have the scope, process of elimination, nothing to lose, much more to gain if it's Crohns!

 

[Hedgehog]

If you don't have the scope, you'll still be worried by the symptoms if they continue. If you do go for the scope, you'll be worried waiting for the results. But you might get the all clear with the scope so your mind can be put at rest...

 

[Journey]

So lets assume I do indeed have it.
No abdominal pain, no 5 to 20 diarrheas a day, no blood, no anemia, no
weakness.
I would still need meds? Are you saying the meds now may decrease the risk of more severe flare ups later? As a prophylactic measure?

Crohnshobo, your post was interesting. You had no pain or D but took meds for 7 yrs? Or you're saying you took meds and because of that the pain and the d went away?

Hedgehog, I see your point and can understand it. But once I ascertain this issue, it will leave my brain. It does until my friend mentions the word colonoscopy 55 times in 10 minutes and then all my relatives mention it every other day. Once that discussion dies down (and once fistula surgery is complete) I will be back to karate, running, without any thought to disease.

As I mentioned in my other post topic, diarrhea is extremely common. In the U.S., 38 million people have IBS. Maybe 55 million.

 

[Journey]

Beth, why was the elemental hell? Purely because it was
liquid or because it tasted horrible?

I just read a scientific study that said elemental diets are the most effective way to induce remissions in severe flare ups.

 

[Journey]

Just an observation that you guys make up such a great community. You are all non-judgemental, supportive of each other, kind, no egos taking control, no fighting. That's really great and really rare to find on a forum.

 

[Keona]

I totally agree with your last post Journey!
________
HOMEMADE VAPORIZER

 

[beth]

Elemental; I struggled with it, because it was the closest to liquidised puke I have ever come across. Sugary puke at that so it makes your teeth really horrible despite brushing with an ultrasonic toothbrush. I can't tolerate maltodextrin which is the main sugar in it, so instead of being absorbed in the first few inches of the small bowel, it sort of spasmed it's way through. Yuk. My dietician was really crap and told me I should be drinking more of it, rather than thinking through how it should be used and how one is expected to react to the stuff. I had to do the research myself. And until it clicked how the stuff is meant to work and the implications I thought it was me 'doing' something wrong - how hard is it to drink something eh?!

Despite that it was doing me good and my guts calmed down. You, probably, have no idea just how gorgeous plain boiled chicken and rice tastes after that.

 

[Astra]

Hi Journey

Yes I agree about this community too!
and Yes, prophylactic measures, prevention rather than cure! for example, I was dx in 2005 and have only taken Pentasa for 5 years as a maintenance drug, and thro that time, I only had D, until this year when I had a major flare in Jan, went on a course of Pred for 3 months, now I'm only taking Pentasa again and feel like I'm in remission, altho I have a bit of D
My point is, if this is Crohns , then you can have a massive flare and inflammation, when you could've prevented it by having a scope and the right meds, I know you don't want to take meds, but in my opinion, if you DO have Crohns, then diet and healthy lifestyle on it's own won't stop an inflammation occuring without a back up med, but thats just my opinion. Others might disagree.
xxx

 

[Brian42]

In your subject line you ask if you are a "chronie," yet you refuse a colonoscopy? C'mon. I don't think you are a "chronie" or you'd get it done.

 

[Mayflower537]

I would, and do, want to know whether I have Crohn's. I've seen some people on this forum talking about having little pain even though they were flaring badly, so sometimes symptoms or a lack thereof doesn't have a bearing on whether or not you have the disease. Inflammation causes damage. I understand not wanting to obsess about it, but you seem like someone who cares about their health. I would think you would at least want to rule it out as a possibility.
Just my two cents, for what it's worth.

 

[Journey]

Brian,

Don't understand what you mean?

If current doc says sigmoidoscopy or colonoscopy, I'd get it.
At least, I would do capsule endoscopy after an MRI
to rule out stricturing. Current doc says no need.
He is literally one of the best.

 

[Journey]

Second round of bloodwork came back.
Had first round 7 weeks ago.

Normal Blood SED rate.
Normal WBC
Normal RBC
Normal hemoglobin
Normal hematocrit
Normal B12 level

 

[razz]

Over here (Australia) I have a Gastrologist that is seperate from a surgeon. Is that the same as who you have been seeing? My Gastro will do a scope but he doesn't do other surgery.

Your question is REALLY hard, I go to answer it one way and then change my mind to the other way.

I had pain and a bit of the runs when I saw the first GP at 21 years old who said not to worry about because the tests to explore these things were not nice.

Then after the birth of my 3rd child (I was about 30) I lost weight and had the runs every morning (just once a day mostly though) and no pain. He took a stool sample and I *THINK* blood and said everything looked fine and it was probably IBS and it was the stress of the new baby (I wasn't stressed).

THEN when I was 33 I actually had a proper flare up and had pain, anemia and all that fun stuff showed in my blood. I was then undiagnosed for a couple of months, just told it was probably gastritis and I took some Nexium. I saw a different Dr who wanted to refer me for a scope and by then I had started feeling better! So I said "How about if the next blood comes back normal will just skip the scope?" and she said "how about if it comes back normal you STILL need a scope".

Oh gosh I AM rambling....

SO anyway I ended up getting the scope and being diagnosed with Crohns.

I said to the Specialist then "oh I have the runs every morning but I thought that was just my kind of normal" and he said "that's not normal".

Now, I'm not on any medication (because it gave me headaches) and I am in remission but I still have the runs and no pain. My bloodwork is pretty normal. I was found to be B12 deficient and my iron CAN be a little low but mostly normal, my platelets are always a bit high..but that can be my kind of normal.

I guess if I were you...I would be asking your specialist if having crohns changes the action they would take on you, if it did and you have been diagnosed with IBS, I would ask about the Colonoscopy.

I don't know if that helps any. :ybatty: