Just diagnosed with Crohns this week- but is my doctor sure??

[Julebuggie34]

Hello all- my name is Julie. This looks like an awesome forum and a great place to find answers and support.

My GI told me this week I have crohns- I said "Are you sure" he said well I am pretty confident.

Some of my Hx: Started having bowel troubles in my 20's- always loose, abdominal pain, bleeding, rectal pain, etc. But too embarrassed to ever go to the doctor. Finally after having a gallbladder attack in 2009 and being forced to go to a doc- I disclosed my bowel/ass problems. I had the typical tests run and colonoscopy. My doc said everything looked "ok" other than internal hemorroids but my biopsies came back positive for microscopic colitis- which he said was not that bad, just chronic diarrhea.

Ok fast forward to now...2 months ago I started having MAJOR rectal pain- went on for over a week before I couldn't take it anymore- and finding out I have an anal abscess- after it was drained (which was a horrific experience)...well I developed a nice leaky/painful fistula.

I had surgery on Sept. 22nd and the put in a seton- which is still there- and I get to continue to wear a granny pad for a bit longer.

Well when my GI got wind of my fistula- he started a battery of tests. My SBFT was normal...my CRP was normal...my ESR- only slightly elevated. But my ASCA was high: IgA: 86.2 and IgG: 78.7- the normal range is 0-20. The test for UC was all negative.

My colonoscopy is scheduled for this week- my question is- I thought you only got diagnosed by colonscopy- how can he already say I have crohns and have me freaking out. Do you ever know for sure?

He also wants to start me out on Remicade right away- which I read about and it scares me to death. I know I have had major bowel/rectal problems- but aren't most Crohns cases in the small bowel?

I would love any thoughts...

 

[Del]

Recently diagnosed myself. A good GP on the ball will spot the symptoms to be honest. My own GP after I told him my symptoms said I was to young for bowel cancer and to old for Crohns disease.. I am 47. Turned out after colonoscopy it was CD.
Never taken Remicade..so no input there.
The best of luck next week Julie. You found a good place here with lots of good information to be gained.. Take your time and gather proper information and don't get scared...get informed...lots of friends here.
Take care..

 

[Crohn's 35]

HI there welcome :bigwave: Crohns can be from mouth to Anus, colitis is usually in the large bowel and bleeding is common. Blood test can reveal some abnormal tissues but a colonoscopy is in my opinion the best way to see but it isn't the only way. Most of the crohns is in the small bowel which is common but as I said from top to bottom.

Remicade is scary but it has helped many here with fistulas and bleeding. But they have to record all findings even in double placebo testings. It could be the answer for you, :hang: let us know what the doc says.

 

[Julebuggie34]

Thanks guys...I guess what I am most scared about is the remicade- I want him to be sure its crohns- I mean is it possible just to have IBS and then bad luck getting the fistula? I am always reading too much into everything- I read to much and then get myself worked up...I just need to chill. I am fortunate though...I actually work at a hospital and the two docs I am working with: My GI and my Rectal Surgeon and two of the best- very good at what they do, and very informative...so I know I have to trust them.

 

[Crohn's 35]

IBS is a not a disease, it is a condition. Try not to get stressed out, it can cause upset whether you have IBS or IBD.

 

[Grumbletum]

I have a good GP too. After loads of pain and bladder problems and seeing other GPs who diagnosed gumbling appendix, UTIs etc then she sent me for an ultrasound. That showed up narrowing in the bowel and she said Crohns was a possibility and referred me to a GI. A barium FT got me a diagnosis and a CT confirmed Crohns and an abscess and fistula.
Thought I was going to avoid a colonoscopy, but eventually had one during a recent hospital stay. Seems like a lot of folks like me need more than one test to confirm Crohns.
I know Remi sounds scary, but a lot of the Crohns meds are. I've gone from Pred & Mesalazine, to Imuran since diagnosed with limited improvement. After two Remi infusions, I feel almost back to normal again.
The Crohns and what it could do if not controlled worries me more than the meds at the mo.
I wish you well x

 

[BookNerd710]

Hi.
My name is Kim btw. I am 25 and have had Crohn's for 15 years, since I was 10 y/o.
Anyway, that is what happened with me. Crohn's can happen anywhere in your digestive tract, from mouth to anus. You can have it in the small bowel. However, I have it near my rectum, which causes inner hemmoroids near my rectum, bleeding, pain when I pass a bowel movement and so forth.
I would do what your doctor suggests. Crohn's is just so awful tricky to diagnosis. When I was 10, it took three tests, 2 colonoscopies, and a barium test..an upper GI test. At 10, it wasn't fun. But by the end of the second colonoscopy, the doc's knew it was Crohn's.
I wish you the best!

 

[Julebuggie34]

Thanks to you all...well Kim I know something has to be majorly wrong with my rectum...I have always had pain and bleeding off and on- even before the fistula...and have had many fissures as well as internal hemorroids that hang out ever so lovely...so maybe mine is somewhere in the colon or rectum...I have heard good things about remicade...but also the bad...but after having this fistula and what all I have went through...if it were to happen again or somewhere else, it would be a nightmare...not to complain because I know there are people worse off than I...it is just not fun.

Question: Is it possible that one's rectum could be too small? I know that sounds like a funny question...but I never have regular stools-when I was a kid I was always constipated...then since my early 20's always loose or watery...once in a blue moon I do have a regular stool- I feel like screaming it hurts so bad- I know I have had fissures too- so maybe that is it...I worry if I do get better having a normal stool might not be fun...although better than running to the bathroom all the time and having accidents...I don't know- I will be glad when this colonscopy is out of the way...so glad I found this forum...so crazy how you read about others and it sounds just like what you have been through...there are so many people I know- friends and family...I have a sister and 3 cousins who have symptoms similar to mine- but they are too chicken to go to the doctor so they just suffer...crazy- I got tired of my ass hurting all the time...so now it doesn't bother me when I have to get my bum checked...

 

[BookNerd710]

Julie..It's possible, I guess to have a small rectum. I know it was hurting for me to go b/c I had a hemmorroid coming out. So when I was pushing, it was pushing against that which caused the immense amount of pain. I've never been on Remicade. I've heard good things & bad. But I think if your doc is wanting you to take it you should. The side effects that are bad, might not be so bad for you as they are for others. I know ppl have had it worse off than we have, but still it sucks all around! You might have a small rectum or you might be pushing so hard that it's creating a larger one as I did when I was 10. The family that you have who do not go, should...it's nuts! i wouldn't want to live w/ this and not get properly diagnosed. I too don't mind getting my bum checked either. Hope I helped.

 

[David]

Hi Julie and welcome I'm so sorry you're having to go through all of this *hugs* to you!

Your doctor is probably looking at the top down approach for your (probable) Crohn's Disease. And frankly, since you already have a fistula, I would tend to agree with this. Remicade is shown to quite often help close fistulas like yours.

I know it's scary! With everything I've read, if I was in your exact position and was diagnosed with Crohn's, I would go on the Remicade until I got into remission and my fistula healed. I'd also be looking really hard at elemental nutrition to help get to and maintain remission thereafter.

Anyway, we're here for you anytime! I wish you all the best, please keep us updated

*hugs*

 

[flowergirl]

my case is a lot like yours but without the long term symptoms prior.

i went on an antibiotic for a strep like illness, and 5 days into it my mouth exploded with ulcers that would only go away with prednisone. then a month or so later i start with the hemorrhoids, mucus in stool, some bleeding, a lot of rectal pressure and what i thought was a bartholin gland cyst. turned out to be a fistula in a really bad place.

i've had 2 colonoscopies, a fistulogram (inconclusive) and CT (found the fistula tract). the colonoscopies only showed chronic non-specific inflammation in the rectum (right where the fistula starts). i was diagnosed by symptoms.

i went straight to remicade. just had my first infusion last monday. i've only had a few mild headaches as side effects (and those could have been hormonal). my butt feels great already. my fistula tract is less irritated and the area around it is less inflamed, getting less discharge.
i'm with you. i'm honestly still a little scared of the remicade, even though i've had a dose! just remember that anything comes with risks (my dr said waking up in the morning comes with risks - lol) but you have to weigh your quality of life with the effects of the drugs. my quality of life was horrible. i was holed up in my house 23 hours a day and couldn't even take care of my 3 year old, and i'm a stay at home mom.

i've done more in the past 2 weeks than i have in 4 months. i'm hoping to close up this fistula and then maybe get to a place where i can get on a less potent maintenance drug.

i know it's scary. but with all those symptoms, you need some kind of treatment.

 

[Julebuggie34]

I appreciate everyones input...it helps...and helps to read others stories...I just think I will feel better after Thursday- my GI is so kind and takes time to really explain everything...if I had to live with a fistula or multiple fistulas I don't know if I could handle it...so I guess agressive is best. David- you are from Naples- I have an uncle that lives down there!

 

[Julebuggie34]

Flowergirl: Your post made me feel a lot better...it is so weird...I am usually such a laid back and easy going person...but since he gave me the news Tuesday I have been so freaking anxious- like in a constant state...its dumb I know...I am scared of the side effects...but also scared that I will have some reaction and I can't take it...and then nothing else works and I have this fistula for life...uncertainty sucks I guess...

I am hoping the days breeze by and Thursday is here and gone...I am so ready to move on and start going to the gym again...I don't know about you, but the more activity I get- the more pain I am in...

 

[David]

And I have a friend up in Sebring If you ever need a hip replacement, I can refer you to a great surgeon

 

[Julebuggie34]

David: This is too funny...are you talking about Dr. Sonni? I grew up in Sebring...I am great friends with their daughter Smitha- who is in NYC now and has found the love of her life! Unless you are talking about someone else! LOL

 

[flowergirl]

Flowergirl: Your post made me feel a lot better...it is so weird...I am usually such a laid back and easy going person...but since he gave me the news Tuesday I have been so freaking anxious- like in a constant state...its dumb I know...I am scared of the side effects...but also scared that I will have some reaction and I can't take it...and then nothing else works and I have this fistula for life...uncertainty sucks I guess...

I am hoping the days breeze by and Thursday is here and gone...I am so ready to move on and start going to the gym again...I don't know about you, but the more activity I get- the more pain I am in...

glad to help. it is kind of a scary drug, but it's kind of a scary condition. uncertainty does stink. believe me, i know. but just remember too, that if this doesn't work, there are others you can try as well. this one just has the best track record with fistulas.
and fistulas suck!! lol. mine was so irritated i could not poop or pee without extreme burning pain. i'm so glad the burning stopped. still have the hole, but hopefully that will close up.

sorry to be so graphic. it's par for the course around here.

it's good that your dr's are working quick about treatment. sounds like they know what they're doing.
one thing that made me feel a little better about doing the remicade was that one of the dr's i've seen was actually on it. for a different condition, but still made me feel a little better that the dr was actually on the med i would be taking.

 

[Julebuggie34]

Don't ever worry about being graphic around me- I am always very detailed/graphic- sometimes my GI- who is very nice- but very serious- well I think I gross him out sometimes...or maybe I help him learn as I am not afraid at this point to describe everything! Plus I am a clinical social worker- and used to be a crisis therapist- so I have heard it all and definitely have to be comfortable talking about everything under the sun!