Hello! New here and in denial (Help please)

[Jerryj1008]

Hello Everyone. My name is Jerry, and I am 48 years old.

My new Colon Rectal Surgeon just diagnosed me with Crohns. I have had a recurrent peri-rectal abcess for 10 years, and occaisional digestive problems, none of which have seemed very serious. A couple of years ago I had a colonscopy which was for all intensive purposes clear. I have had some minor blood that they couldn't really explain.

After a recent flare-up of the abcess put me in the emergency room, I was referred to a C&R Surgeon, who said that the abcess was caused by a fistula that had never healed. He ordered a blood test as well. After reviewing the results of the blood test he said that I have Crohns.

So I went to work on the net. According to the internet, Crohns cannot be diagnosed by a blood test, but that it's a combination of symptoms and diagnostic tests that paint the picture. My symptoms, although relatively minor, do seem to fit one type of Crohns. The doctor said that a new blood test runs all of my blood chem readings through an algorithm, and that the results show a very high probability of Crohns. That, plus my symptoms, are what led to his diagnosis.

He wants to treat me with a Remicade infusion every 8 weeks.

So, I guess my concern is that based on what I have learned about Crohn's, I feel like it's hitting an anthill with a sledgehammer. I have no weight loss, stomach pain, or severe cramping. I have had bouts with consipation and diarrhea, but the symptoms come and go, and I have been able to (for the most part) adjust my diet to compensate. The only real issue has been the recurrent abcess, which I admit has been a problem, and makes me pretty sick twice a year at least.

He wants to meet with me for a full consultation on October 8th to discuss my treatment plan and address concerns.

I am looking for any insights from anyone please.

Thanks.

Jerry

 

[beth]

I ended up in A&E here in the UK because of an abscess/fistula - it's one of a number of symptoms of Crohn's, and ISTM one of the nasty ones - the surgeons and GI's treat it seriously.

From what I've read Remicade is pretty good for fistula's, so unless you have very strong opinions or reasons for not following your doctors recommendations, I'd go with it.

From my own experience we tend to minimise our symptoms and gloss over the bits we don't like. Explaining them to someone else always makes me wonder why the heck I put up with it for so long....

Anyway, Welcome!

 

[imisspopcorn]

Welcome to forum Jerry. Do your research regarding different treatment options so you can discuss any concerns you may have with your doctor. There is a lot of info on thr treatment threads here. I'm guessing you might be a little more ill than you realize.( I am glad you are plugging along so well):welcome: Fistulas aren't always easy to treat.

My doctor did a blood test on me as well. It was also to rule out Celiac disease vs. IBD. I don't think it's definitive. I believe it tests inflammation like a CRP test does and says how likely it is that you have the disease. I will try to research it more.

 

[Jerryj1008]

One other thing. I am going to ask for my test results to be read by another doctor to get a second opinion. I figure it can't hurt. The more I read about all of this, the more I think that my symptoms fit. If I can reduce the number of flare-ups of this recurrent infection, it will improve things a lot. That pain is like a 15 on a scale of 10 when it is at it's worst.

Thank you for your comments so far.

 

[josh46290]

i think i might have one of these abcesst or whatever it is.....

 

[josh46290]

sorry im rude. welcome to the forum.

 

[josh46290]

they diagnosed me through a c.t. scan because i wouldnt get a colonoscopy...

 

[Jerryj1008]

The blood test is a new one that looks for the pANCA, ASCA, OmpC and CBir1 Flagelin markers. Apparently it is pretty new.

Anyone heard of it? It's done through a specialized lab.

 

[imisspopcorn]

I think the name of the lab is Promethieus (SP?). I think the reliabilty/accuracy has been questioned as it is not always definitive. I think its just another tool along with CT scans, barium swallows, and colonoscopy that is used.

I wish there was definite test, many people are in constant anguish because they don't know for sure if they have the disease.

 

[kjhngisd]

yeah, you'll probably want a colonoscopy and maybe a CT.
After my wife's last colonoscopy, I talked to the doc -- who was an older fellow with a bright fire to his eyes.
he said.. "yeah, i've been around a while.. she has Crohn's" . But a blood test alone usually won't do it.

 

[My Butt Hurts]

Hi Jerry - welcome to the forum. Is surgery an option for your fistual, or seton drains? Remicade has been known to really help fistulas. I haven't had any problems with mine since I've been on Humira or Remicade over a year now. If you do a search for Remicade on here or for fistulas, you'll find a lot of great info about them.

 

[Jerryj1008]

I'm not sure yet about all of my options.

Had a colonoscopy 18 months ago and it was clear. Just had a CT and they were able to identify a fistula. My abscess has swelled up multiple times every year for 10 years, but usually drains on its own after a few painful days. Once and awhile I end up in the emergency room to have it opened up. It's always been the same site. Nobody ever seriously mentioned crohn's to me until this past year. So I have just managed through the symptoms over the years.t

I meet with my surgeon next month to discuss options. He wants me to go on Remicade. My concern is that if go on it now, when my symptoms have been pretty mild, that it may not be available for me later if they get worse. If my colonscopy was clear, and I've had this for 10 years since my first symptoms developed, then do I really need it yet?

I've been told that the doctor that I am seeing is one of the best in the state for Crohn's. I was going to get a second opinion anyway, but may wait until after my consultation. I've recently spoken with a few people one on one who have had Crohn's for years, and they had a lot of war stories to tell me. My problems seem pretty mild compared to what they have gone through.

 

[kenny]

I have been told that the presence of Granuloma identified from biopsies taken with a colonoscopy or from the intestinal material removed by surgery is a key to definitive diagnosis.

But when you have fistulas developing from your intestinal tract into other organs or through the skin it's a rather moot point. It is no fun having your guts leaking out your belly or other places. I am quite amazed at how my body was trying to cope with this disease complex. It actually rerouted some of my intestinal content to bypass the constricted section. But having my belly turn into my butt was just not going to happen. not yet anyway.

I have not discussed Remicade with my GI team yet but that may come. I will begin Prednisone treatment for immune suppression once my surgery is completed. Good luck with this Jerry. It's great you are actively looking into your treatment.