Being Tested For Small Bowel Crohns

[Terch]

Hi,

I am not sure if I should even be posting here at this point in time. I have just undergone an endoscopy an upper GI barrium and lots of blood work. Everything came back negative, my GI thought I might have an ucler or Celiacs. I am presently on Nexium for my upper GI discomfort, burping tightness, full feeling etc. And motilium for lower GI symptoms. Anyway, from what I have read on here and the symptoms it seems to me that I don't have Crohns and that I am too old to be diagnosed with it (46) The question I have is does anyone have MILD crohns?
Anyone diagnosed this late in life? I have had these symptoms on and off since childhood. Diarrhea etc and weight loss but not as severe as these past 7 months. In the past 7 months my upper GI symptoms are relentless along with the fatigue and joint pain. I also have a lot of lower abdominal discomfort but I think that's from the nexium. I have occasional diarrhea and it's always painful with cramping etc. and mucous. Does anyone have symptoms similar to mine? If this is not the right forum for this please let me know. Thanks in advance.

Thanks T

 

[mikeyarmo]

Hi Terch

It is not abnormal to be diagnosed in your 40's at all. In fact, some people do not get diagnosed until their 60's or older!

Anyways people who do get diagnosed later in life have often had a milder case with the disease. It is actually common for many people diagnosed later in life to realize they have had symptoms for many years, if not all their life. That "weak stomach" turns out to be the manifestation of a crohnic disease like Inflammatory Bowel Disease.

So what you are going through is totally normal! While it is not fun to learn you may have a crohnic disease, you should feel good to know that you will likely have an easier go with it. An older patient is even less likely to require surgery, so medication may be able to effectively control a condition you have.

Good luck with the diagnosis, and do not worry about what may be. Feel free to post here if you have more questions.

 

[skeet]

Aloha Terch. I also wasn't sure this was the right place for me as I don't have Crohn's or IBD. My symptoms are much the same though. I've benefited from the other members here & hope they've gained a little something from my presence. It's the right place for you, too, if you want to talk about bowel problems in general, including (but not limited to ) diet, medications, treatments and lifestyle. So if you're comfortable here, I think I can safely say, yep ... you belong!

 

[Jeff D.]

Hey Terch, I have heard of someone being diagnosed with Crohn's at 80 so forty is not too old. We have a lot of great information on this site and welcome to the forum. And everyone with an intestinal problem belongs here.

Best of luck

 

[Terch]

Thank you for the welcome, is there someplace that people talk about their symptoms etc. or is this the spot? If this is the spot does anyone on here have mild Crohns and what were their symptoms? I am going for my SBFT tomorrow and apparently that plus the blood work will help to identify if I have Crohns. The endoscopy was negative.

Thanks Terch

 

[Kev]

Hey Terch Welcome to the forum... I wasn't officially diagnosed until my 50's, even now they aren't sure/can't differentiate whether it's Ulcerative Colitis or Crohns... My doctor now suspects my disease goes back at least 17 years... So, u aren't 2 old. As for symptoms, I experience fatigue, weight loss, joint pain, bouts of diarhea (that has slowed down from my worst point in time thanks to the treatment I am on now), plus daily abdominal discomfort, and.. a warning sign of a flare-up for me is mucous in my stool - typically followed within days by increased blood loss too. My problems seem to be centred for the present in the colon, one reason my dx is being debated.. I've left out other symptoms I have that you have not mentioned, but because this illness treats everyone a little differently, it really is not helpful to try to self diagnose based on any similarities or differences you may have to those expressed by people on here such as myself.. you get me?
Your GI must have good reasons for not putting Crohns at the top of the list, and they are the experts at diagnosis (altho dx'ing IBD correctly can be problematic). I personally always saw more than one GI, just to cover my a@# ( if you'll pardon the expression).. Has your GI offered a reason for not doing any colonoscopies or sigmoidoscopes? As for MILD Crohns, I'd be thankful for small favours. If my doc is correct about having had this for 17 years, then at times mine was so mild I didn't know I had it.., but the last few years it made up for lost time with a vengence, OK

 

[ruthymg]

Hi, welcome to the forum. I have crohns disease and have symptoms similar to what you have described. However, it was difficult for me to get a diagnosis as is for most IBD sufferers, so before I was diagnosed with crohns, I was told they thought I had coeliacs. Apparently the symptoms are very similar, symptoms are also similar in people with Diverticulitis. I'm afraid its a case of enduring as many tests as poss to get the correct diagnosis. Thats what I did. It took 6 years for me to get a diagnosis, so you're not doing too bad in that department. Hope they can sort you out.

Ruth

 

[Terch]

Hi Kev,
Thanks for the reply and what you say makes sense about not comparing as we are all different. I guess I am at the stage where I just want a diagnosis so that I could actually take something or start the journey towards feeling well so I am jumping ahead of the game.
I was diagnosed with mucousa colitis at 13 which they now call IBS and it has changed drastically in the last 5 years and they still want to call it that. It may be true but I would rather have everything ruled out before it is. I am on a wheat, dairy and soy free diet to try and see if that helps and so far I have noticed a few good days. I am surprised that with you being Canadian you get to see two GI's I can barely get into one here in Ontario.
My GI was looking for ulcers, celiacs and perhaps gerd and my early diagnosis of IBS... he said he was looking for noninflamatory illness and has decided now to look for inflamatory. I am thinking after my sbft today that the next step may be a colonoscopy.

Thanks for the words.

Hey Terch Welcome to the forum... I wasn't officially diagnosed until my 50's, even now they aren't sure/can't differentiate whether it's Ulcerative Colitis or Crohns... My doctor now suspects my disease goes back at least 17 years... So, u aren't 2 old. As for symptoms, I experience fatigue, weight loss, joint pain, bouts of diarhea (that has slowed down from my worst point in time thanks to the treatment I am on now), plus daily abdominal discomfort, and.. a warning sign of a flare-up for me is mucous in my stool - typically followed within days by increased blood loss too. My problems seem to be centred for the present in the colon, one reason my dx is being debated.. I've left out other symptoms I have that you have not mentioned, but because this illness treats everyone a little differently, it really is not helpful to try to self diagnose based on any similarities or differences you may have to those expressed by people on here such as myself.. you get me?
Your GI must have good reasons for not putting Crohns at the top of the list, and they are the experts at diagnosis (altho dx'ing IBD correctly can be problematic). I personally always saw more than one GI, just to cover my a@# ( if you'll pardon the expression).. Has your GI offered a reason for not doing any colonoscopies or sigmoidoscopes? As for MILD Crohns, I'd be thankful for small favours. If my doc is correct about having had this for 17 years, then at times mine was so mild I didn't know I had it.., but the last few years it made up for lost time with a vengence, OK

 

[Kev]

Hey Terch... Welll, one of the points in my favour is that my GP is the best ever. He's seen to it that I've been seen by the best GI's at two different hospitals.. the catch? They're in different cities a short drive away... I've also been seen by a number of GIs at the clinics I attend (that was sort of a luck of the draw... my current GI is off on a maternity leave - has approx. 1000 patients, 40 - 60 of those will be seen by other GI's - I was lucky enuff to be ill enuff to make that 'short' list). I was also seen by the head of GI at the university, simply because he found my case particularly intriguing, and wanted to use it as a test case for his students..

 

[Karen]

Welcome Aboard ... Have a great time here and I am sure that you will make plenty of friends here on the site !!

 

[devildee(donna2005)LOL]

Hi Terch,
:welcome:

 

[Skinsfan1229]

Just like to say hello. And seems to me you have very mild crohns if you have it. Have they taken a biospy?

Crohns can be diagnosed at any age, I just bleieve 17-35 is the most common, but again I tblieve wonce you hit like 60 the risk goes back up to a large amount.

I've had endoscopies and smbt's and such, CT's all that 'normal' stuff when i had pain back in jan, (I only had crohns colitis...crohns in the colon and rectum before that), the only thing that showed anything was a pill capsule camera, which took about 50,000 pictures, and showed multple lacerations , uclers and porforations even, and strictures/blockages. the tests arent always accurate when they say everything is fine.

 

[xrayzerase]

hi terch
wow-we have very similar "symptoms" (not that that means anything..but-i figured sometimes it helps knowing if others have similar stories..and what they did/do to find out all they can-or something like that..
i was dx'ed late in life-(at 43) -but i have had symptoms since i was in my mid 30's and probably earlier-i just didn't think they meant anything.
the reason i finally went in for the endoscope and the colonoscopy was mainly because of the heartburn (constant) as well as stomach and lower ab discomfort (and one time with major stomach (?) pain after eating (almost went to hospital that day) -and -the last trouble was diarrhea. i had trouble with d for many years-but never did much about it. the past year it got worse-and the last few months before i went to the gi for the scopes-the d turned yellow and was watery almost every time...and for the past year it had been with "mucus". i had/still have lower ab cramping. but the pentasa and/or entocort has helped with the d.
anyway-i have sine been dx'ed w mild (maybe moderate) crohn's-in ileum-and uncertain about anywhere else in small bowel (looking into having the pillcam test-but have to wait for insurance approval) i am on pentasa and my last couple weeks of an 8 week round of entocort.
my dr did a test suggesting remicade and maybe 6mp-not sure if he meant both-or either-not sure. we are waiting it out. i had the small bowel and upper go barium thing like-oh-a few weeks ago. i do have gastritis-but-it is hard to say why nothing i take works for the heartburn. i take aciphex 20 mg 2x day (tried all the others-no go) and ativan .5 2x day (though-since the hb has been bad the last 2 days-i upped it to 3x day. helps a little-but-not much.
i eat -well-not much now. did have a piece of fish baked with honey. and the rest of today-just ensure drink. yesterday i had chicken soup (pureed) with a few crackers-and then ensure. it is like this most days since dx. eating is still "scary" for me. i have lost weight-but..not too worried yet. the ensure helps. but i have lost like 20 or more lbs in just 2 months. (a lot for me-as i am sort of small and was average weight to begin with)
anyway-dont know if any of this helps-but-feel free to email me if there is anything you want to ask. i am very new to all this-and know hardly anything-but-i do have many of the same symptoms-and our ages etc--similar.
you haven't had a colonoscopy?
perhaps maybe it is worth getting one.
and if you do-be sure the dr goes into the terminal ileum to check for erosions (ulcers)-that is where mine were found.
you may not have crohn's -but it is worth ruling out.
i also was thought to have ibs-and celiac disease-have neither.
good luck
and i haven't read the other comments yet-so-maybe more info..but..as for the heartburn-yes--it is a killer. it never goes away. i asked about pain meds (even though i went through a mild addiction to codiene/tylenol 3 (t-3's) before-but-it has gotten to where i can not deal with it. it simply wont stop. (oddly-ambien helps-at night i feel it less. this is what led my dr to try ativan-and it did help for a bit-but ..not long. so..i don't know. i /my dr are still unsure about what is going on-which is why i need the pill cam-and most likely will go on remicade
anyway-good luck.
andrea