Might have Crohn's Disease

[doIhavecrohns]

I'm new to the forum, and I have some general questions about the types of symptoms people usually get when they have Crohn's disease. First off, here is my story:

About four years ago, I started bleeding when going to the bathroom. I'll try not to be too graphic, but at times the bleeding appears to be pretty severe. THere's usually no pain involved. I went to see my family doctor about it, and he referred me to a gastroenterologist. I honestly knew that a colonoscopy was in the works and, being a 21 year old at the time, was not too keen on having that done. I sort of fudged my way out of it saying that the bleeding was probably related to me taking protein supplements for weight lifting. He agreed and didn't do a colonoscopy. The bleeding continued for the next 4 years, sometimes lasting for just a day or two and sometimes lasting for a week or two. I'd have bouts several times per year. Sometimes a couple times per month. I never had much pain, though I could usually almost feel blood accumulating inside. Again, being too proud, I never went back to the doctor.

Now, 4 years later, I have pain that started in my groin. My new family doctor told me he thought it was epididymitis, although I'm married and from my understanding that's pretty much an STD for people my age... not really applicable to my situation. Also, they did a bacterial test that came back negative. The pain traveled to my RLQ and has been there for two months now. I've had normal CT scans (with and without contrast), a normal back X ray, completely normal blood work including two tests that were supposed to be for crohn's disease (don't know what they were). The pain is not unbearable... something like a 5 on a scale of 1 to 10. As an aside, I've had on and off joint pain for a few years now. I thought I had lyme disease a couple years ago and had bloodwork done. I had an "abnormal" ANA rate of something like 1:80. They tested me again last summer, again for joint pain, and it was supposedly normal.

I've finally gone to see a gastroenterologist who says I MAY have crohn's dieases or Ulcerative colitis. I have no family history of it, that I know of. My brother claims he bleeds a lot when he goes to the bathroom, though, but has no other symptoms. I'm also biting the bullet and finally getting a colonoscopy in a few weeks. Overall, I feel like my symptoms are pretty mild compared to what I've read about Crohn's disease, but I'm not sure. Did anyone else's symptoms start out like mine? Does anyone out there have any other idea what I could have? I feel like the doctors kind of get tunnel vision when they examine me and don't really look at the full range of things it could be. I've heard everything from epididymitis, appendicitis, kidney stones, etc, but none have panned out in testing. So far its just mystery pain in my RLQ and a history of bleeding/joint pain. Any advice?

 

[Brando]

the bleeding suggests more than likely UC rather than crohn's however the RLQ pain is a very common symptom of crohn's. it is possible to have crohn's with bleeding fistulas and large intestine involvement and that may be what it is. honestly, the only way to really tell what is going on is to get scoped.

where do you live geographically? it is possible to have lyme disease and lyme is very stealth like. it is not commonly diagnosed because of how difficult it is to actually get a positive test done. if you really think it might be lyme i would suggest getting tested by this company and this company only because most doctors labs have insufficient equipment to get a proper readout from lyme blood work: http://www.igenex.com

 

[doIhavecrohns]

Thanks for responding so soon...

I live in Virginia. As I re-read my post, its pretty jumbled, so its probably sort of unclear. I've had periodic joint pain since 2004. My elbows were bad for a few months, so I got tested for Lyme at the insistence of my mother. It was negative, but that's when I had the slightly high ANA reading. Last August (2006), I had fatigue as well as shoulder, knee and elbow pain that sent me back to my family doctor. I had another full blood work up and all was apparently normal. I chalked the pain up to stress or weight lifting. I still have periodic joint pain and crackly knees, elbows and shoulders. No other lyme symptoms though.

I should also mention that back in February of this year, about two weeks before my groin and RLQ pain started, I had a bout of what I thought was the stomach flu (and may have been). I vomitted several times and had a few days of diarrhea. I felt overall really bad. I had another bad case of diarrhea after the groin pain started, and that lasted a day or so. I also had a bad case of diarrhea back in October that lasted a week, though I thought it may have just been food poisoning or something.

Anyway, I appreciate any and all advice. I'm not sure what I have... it seems like I have a myriad of non-specific symptoms that could fit a billion different diseases.

 

[Jeff D.]

There is a possibility that you can have crohn's. I have had bleeding with crohn's and it does not just suggest UC. But the only way you are going to be able to find out is by going to a doctor. Get a colonoscopy and ask for them to knock you out if you want so that you don't feel it or know anything is going on. I know since I have a skin tag they always put me under when I get a colonoscopy because it cut my tag a little and irritates it.

Best of luck

 

[soupdragon69]

I can certainly empathise with your feelings on doctors saying its this or that but not getting a definate diagnosis.

You are doing the right thing by going back to gastro. We all understand your concerns about having the colonoscopy but the only way to truly identify something like crohn's or ulcerative colitis is to visualise it via the scope and take biopsies (which you wont feel as they are miniscule).

Many of us suffer from joint and muscle pains either during a flare up or day to day. Exhaustion is another one. I have been told over the years it was either IBS, Chronic Fatigue Syndrome or all in my head. So hang in there and make sure you find the answer for YOU ok?

The thing with doctors is they have so many diseases etc with similar symptoms its only by tying in multiple aspects like various tests (which can take some time) and clinical exam they can give an answer. But they have to be looking in the right place also so make sure you are 100% honest with them and give them as much info as you can too. We all understand it can be embarrassing but keep in the back of your mind you want your health back and are prepared to fight for that and you will manage. Also that you are by no means alone.

Think also about perhaps other aspects you may be so used to living with you dont acknowledge day to day. Keep a diary for a few days to see how you do overall - it might help you to identify things. I never realised the level of pain I lived with or the different areas it was in until I started to get relief for instance.

My GP thought I was Coeliac and wanted me to go gluten free and I said after previous diagnostic hiccups I wanted a definative diagnosis and so we went to gastro for confirmation and it turned out I had Crohn's all this time! They also discovered I wasnt absorbing my fat soluble vits or bile salts properly so it was compounding my exhaustion etc.

So dont give up, keep asking and remember we will chip in our tuppence worth where we can alright?

Thinking of you.

Jan

 

[Evagation]

Well, Jeff D. is right about rectal bleeding not always signifying UC. In fact, my rectal bleeding started when I was seven and it has always been the worst symptom of my Crohn's (yup, Crohn's). Many people don't realize that there is a third, more rare, IBD diagnosis--Crohn's Colitis. Which means that my entire digestive tract is affected by Crohn's, and that I have all of the normal Crohn's symptoms from the colon on up, but my Crohn's symptoms in my colon (large intestine/bowel) are those of someone with Ulcerative Colitis.

So, instead of the common CD fistula problem, I get tons of bleeding ulcers in my colon. Just like a person with UC. So, it is possible to have Crohn's Colitis (sad, but true).

And someone else already mentioned that joint pains are another common symptom of IBD. I got the arthritis diagnosis at 12, and have spent this entire week icing down my swollen, arthritic knees.

And good for scheduling your colonoscopy! If it makes you feel better--I'm only 26 and I've already had well over a dozen colonoscopies (I get to have one colonoscopy a year for the rest of my life because of my high risk of contracting colon cancer). The prep is the worst part. If you want support while you prep, I'll be more than glad to sit in a chat room with you, or run an instant message program. I have definitely been there and done that. And it's certainly not fun but the colonoscopy is pretty much the only way the doc can really see what's going on in your colon.

(I hope that doesn't come across as being both condescending, and belittling of your procedure. I completely understand why you are apprehensive, and wanted to put off the colonoscopy. My docs could easily give me a list of the times that I've just "forgotten" to schedule a colonoscopy that they ordered for me. There is absolutely nothing fun about it. Sadly, they really are truly necessary to help the docs figure out what is making you bleed.)

For example: A common IBD meds treatment is a group of drugs called the 5-ASA drugs are a group of drugs that most of us are probably taking in some form, or another. The 5-ASA pills act in different ways and are meant to "release" at different points in the digestive tract. Once your doc can see what parts of your colon are sick from the colonocsopy, he'll be better able to treat you afterwards.

I'm not saying you'll get that treatment, or even that you have IBD (although the symptoms do point to IBD) but that's just one small example of how useful a colonoscopy is for your GI doc.

(And, oh yeah--family history. Mine also never had a history of IBD until I came along. There are a lot of really, really interesting reasons for the rise in autoimmune diseases over the past few decades.)

What prep has your doctor given you for the colonoscopy? If you don't mind me asking.

(Also: Since IBD is an immune-based disease, our body's largest immune system, the digestive tract, attacks itself because it can't tell the good stuff from the bad stuff. Sadly, it's not uncommon for someone with IBD to have other autoimmune problems--most of us have the arthritis problem. I'm not sure about everyone else, but when my CD is flaring, and my body is pretty much rejecting everything I try to put into it, I find that I'm also far more open to infections than when I'm in remission. Since a CD flare essentially means that my immune system has gotten out of whack again, so on top of flare, I'll get a bronchial infection, or something similar. It could be another reason why you feel like you have all of these unrelated symptoms. When your immune system is sick, you're susceptible to all sorts of things that your body would normally fend off easily when it's healthy.)

Good luck with your colonoscopy! Although I promise you that once you get through the prep, the colonoscopy itself is easy (you're asleep on the happy drugs the entire time... sometimes I think the only reason I keep going in for these annual colonoscopies is because I love the feeling of being sedated so much, but I'm strange).

Katie.

 

[CanadaCurt]

I have Crohn's Colitis and I bleed frequently when I'm in flare...so bleeding isn't just indicative of UC. I also had pain in the RLQ before I started bleeding. Get in checked ASAP. Crohn's affects everyone differently, I work with a guy who has Crohn's and by his lifestyle and the way he looks you'd never know. The reason I'm mentioning that is don't get scared by reading Crohn's horror stories because you may never encounter all those problems

 

[ruthymg]

Before I was diagnosed, I too suffered with terrible pain in my back and stomach. I thought it was skeletal but it turned out to be muscular. I also had sweats, pain when going to the loo and mucous, but no blood, alonmg with a number of other problems like persistant mouth ulcers, dramatic weight loss, bloating, loss of appetite etc etc. It took 6 years for me to get a diagnosis as every test I had came back normal. Eventually after a second opinion, I was diagnosed after abnormal test results. I believe that the bloods and stool samples taken previously were done when I was in a very small flare and so, there was no raised white blood count to show inflammation was present. When I had my final tests it just so happened I was in a bad flare, so diagnosis, I presume was easier, or thats my theory anyway. What I'm saying is, don't give up just yet, you may still have IBD, persist with the tests, time will tell. I hope you get a correct diagnosis soon.


Ruth