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Crohn's Disease Forum » General IBD Discussion » Is a diagnosis/treatment that important?


09-02-2010, 04:32 PM   #1
TMos
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Is a diagnosis/treatment that important?

Hi again. First thread and I'm wondering if there's any reason to rush and find a diagnosis if your GI suspects Crohn's. It seems that the diet restrictions/diarhea is here to stay regardless. Is there a benefit from taking drugs when you're not flaring?

I'm pretty much on my own to pursue further testing with my GI. I'm a bit bloated but not in any real pain. Am I missing something in regards to getting a proper diagnosis? If you only had D 1 or two times a day without a lot of pain is there any reason to pursue medical treatment?

Thanks ahead of time for anyone that has a good answer for this one.
09-02-2010, 04:49 PM   #2
Manzyb
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Hey there! and welcome!

Yes, it is important to get a diagnosis. If you do have Crohn's disease, even if it is maybe a "mild" case right now it can get worse if it is not properly treated. If you take medications while you're not flaring to maintain remission, it is important, it will hopefully prevent you from having a bad flare up and get sick again. I've gone of medications a few times when I was feeling really well and then ended up in the hospital a couple of months later sicker than I was when i first got sick.

I would definitely pursue more testing and get a diagnosis for yourself.
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09-02-2010, 04:57 PM   #3
tiloah
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There are pros and cons. The major pro I can think of for not getting the diagnosis/treatment is you don't have to worry about insurance.

For me, after a CT scan that showed inflammation in my terminal ileum, I was essentially given the choice to get a colonoscopy or not. It turned out to be the right choice to do it. My doctor told me the inflamed area was severely narrowed. I needed treatment.

When you are in remission, it is generally accepted that treatment will help prevent a flare. That alone would make it worthwhile for me, but it's a personal choice. I think treatment can have a positive effect on symptoms, but it doesn't always.

Oh, and welcome.
09-02-2010, 05:40 PM   #4
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Yes, it is good to get a diagnosis! There is no cure for it, so you might as well do what you can to keep it at bay. Many people (including myself) have become in denial. YOU dont have to live the disease but you cant ignore it. Using high probiotics and a low residue diet helps. Avoiding alcohol, smoking and junk food goes a long way. Hope you make a good decision. Good luck!
09-02-2010, 09:57 PM   #5
prettykitty
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Hi Tmos,

I agree with the previous commenters; it IS important to get a diagnosis and treatment, even for mild CD.

I can share my own experience. I have mild CD. Before diagnosis, I had 1-2 D per day without much pain. I spent about a year of not really thinking it was a big deal, but still feeling like what I was experiencing wasn't normal. After my second "accident," I bit the bullet and got a referral to a GI. A few months later, I had my diagnosis of CD (regional enteritis of the terminal ileum) and began treatment.

So even though my CD is mild, diagnosis has been beneficial in a number of ways:

1. I am receiving appropriate treatment. Even though my symptoms were limited to 1-2 D a day and occasional incontinence, getting treatment has made a huge difference! I don't have D anymore, except on occasion. I had not realized how much the D had interfered my life until I stopped having it.

2. Peace of mind. Admittedly, my diagnosis was overwhelming at first. It was a bit scary to accept that I have a chronic illness that will be with me for the rest of my life, but it sure beats not knowing! Knowledge is power; even though the future we all face is scary, at least I know what I'm up against; I know what is within my control, and what is not.

3. Support. Getting a diagnosis enabled me to reach out to this community and interact with people who understand what I am dealing with.

As already mentioned... getting treatment even when you're not flaring can help prevent future flares, and having an official diagnosis comes in handy when it comes to insurance/disability/taking time off from work (when needed).

Anyway, I hope this is helpful! I encourage you to continue to pursue a diagnosis with your doctor. If you haven't already, push to get a colonoscopy (NOT a sigmoidoscopy!). My GI doc (who is totally awesome, btw) suspected I had IBS, based on my mild symptoms, but ordered a battery of tests to rule out other things. He gave me the option of colonoscopy or sigmoidoscopy -- I chose colonoscoy (figured, if you're going in, might as well go all the way, right? besides, I hear you don't get any sedation for sigmoid, and the tube is bigger!). Turns out, he found inflammation in the terminal ileum, which he would not have identified with sigmoid.

Hope this is helpful, and good luck! Don't dismiss your symptoms just because they are mild! Even mild CD impacts your quality of life. It is worth it to find out what is going on.
09-06-2010, 05:11 PM   #6
MommaDot
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TMos,

I had Crohn's for years and did not take my meds when I was not flaring. I tried to just control the symptoms when they cropped up. Would take a 1-2 week blast of high dose Prednisone when I felt a flare coming on and go on my merry way. One day my GI doc told me I needed surgery!?! I felt better than I ever had. Regular stools, working out, in shape, eating well. I had abcessed or ruptured and had tons of scar tissue on the outside of my intestines and did not know it. It was not seen on small bowel x-rays or in colonoscopies, but was a hard mass. I lost 26" of small and large bowel. I like to think if I had taken care of myself and taken the maintenance meds for Crohn's I never would have gotten in that shape. So, yes, unless you want to someday possibly lose part of your small and/or large intestine, you need to stay on top of things. Just part of my story.... Get a solid diagnosis and go from there. Good luck finding what is best for you!
09-06-2010, 05:32 PM   #7
Rossy
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Its very important to get a proper diagnosis, I have colitis not crohns and many problems i had prior to being diagnosed were themselves as a result of the UC I was yet to be diagnosed with.

For instance i was treated for a frozen shoulder, back/bone problems, eye inflammation etc but this was UC manifesting itself elsewhere in my body, but at the time I didn't realise it.

Getting a UC diagnosis helps me deal with these other problems which over the years have at times been quite bad, I've been a cripple but when it happens i know its not going to be permanent, thats very important.

Also, as said previosly by prettykitty, knowing, is all important, without that you could worry yourself to death that you actually have something worse going on.
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10-12-2010, 02:09 PM   #8
TMos
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Lost track of my own thread. Thank you for all of the advice. Since not a single person told me to forget about it and carry on I guess I'll have to call my GI and start getting probed. I was told it's either post infectious IBS or Crohn's. Since he was just up there last year (with my family history I get checked pretty regularly) he dismissed colon cancer.

My follow up instructions were if I didn't get significantly better to come in and get a sigmoidoscopy. I guess that's where I'm hesitant, because I am doing better than I was in July, significantly better. Like using the head once a day and it pretty much being normal better. But I've also been doing SCD and if I stray and eat pizza I'm back to being a mess. So is that significantly better?

Crap, guess I gotta call him.
10-12-2010, 02:29 PM   #9
Jennifer
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Feeling better or not is irrelevant if its possible that you may have a chronic illness like Crohn's Disease. There are some people who have said that they basically had no symptoms yet found themselves in the hospital at one point needing surgery. Even if you feel great now, prevention is key and no matter what your diet, you can always have a flare and medication can prevent such things from happening.
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10-12-2010, 03:04 PM   #10
2thFairy
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I know that at least with UC, *especially* if not treated, you run a higher risk of colon cancer than the rest of the population.
10-12-2010, 04:21 PM   #11
Rossy
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I know that at least with UC, *especially* if not treated, you run a higher risk of colon cancer than the rest of the population.
Yeah thats right, i feel like the bearer of bad news tonight, but i found the following whist searching for something else, seems the outlook if you do get colon cancer and have UC isn't that good, something we should all be aware of i feel:

Colorectal Cancers. Patients with UC have a higher than normal risk for cancers of the colon and rectum. About 5 8% of patients with ulcerative colitis will develop colorectal cancer within 20 years of their UC diagnosis. The risk of colorectal cancer increases with the duration and severity of the ulcerative colitis condition. The presence of inflammatory polyps (pseudopolyps) more than doubles the risk. Some research suggests that anti-inflammatory drugs, such as 5-ASA, may help reduce the risk of cancer. Doctors also advise that patients with ulcerative colitis receive regular (every 1 3 years) colonoscopy exams to help screen for cancer. According to a 2006 study, patients with ulcerative colitis who are diagnosed with colorectal cancer have a worse prognosis, and poorer survival, than those without ulcerative colitis. [For more information, see In-Depth Report #55: Colon and rectal cancers.]
10-13-2010, 11:16 AM   #12
TMos
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Lovely. Well, none of us are going to make it out of here alive anyway, right?
10-20-2010, 10:54 AM   #13
TMos
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OK, so to answer my own question in case anybody does a search or finds this thread, YES, getting diagnosed is very important.

Glad I found this forum or I wouldn't have pursued this any further after my last appointment. Colonoscopy scheduled. It's amazing how quick and easy it is to get a colonoscopy in the US compared to what I read about the UK and Canada. Too bad the health insurance premiums and deductibles are so high that it costs a freaking fortune. Probably doesn't hurt to have a mother, aunt, uncle, and cousins with CD. : ( He seems fairly certain I don't have it because he can't feel a mass in my lower right quadrant, and the pains I do feel are more consistant with pi ibs. Seems like he's trying more to rule it out than rule it in.
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