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Crohn's Disease Forum » General IBD Discussion » Erosion in Terminal Ileum


07-25-2012, 10:31 AM   #1
Lydia_Marsh
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Erosion in Terminal Ileum

Hi everyone!

This is only my second post, and I am still in the "undiagnosed club," but I had a colonoscopy on Monday, and my doc told me he did see erosion in my terminal ileum. Waiting for biopsy results now, but he said this still may not be Crohn's- he mentioned that erosion in the TI can be caused by use of Advil/Aleve. I am pretty anti-medicine for the most part and rarely take any ibuprofen, etc., so I'm not sure that I have used enough of these medicines over the span of my life to cause erosion. Has anyone else dealt with this? I guess it would be a blessing for the erosion to be caused by ibu/aleve/advil rather than Crohn's, but I'm just not sure I'm buying that potential d/x. Any thoughts/ideas/advice?
Thank you all for your support in this trying time.
xoxo <3
Lydia
07-25-2012, 02:07 PM   #2
David
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Hi Lydia,

I did some research and couldn't find any good dose specific information on NSAID induced colitis. But I've got to believe that if you rarely take it, chances are that's not the cause. I can't base that on any hard data though, sorry
07-26-2012, 03:28 PM   #3
Lydia_Marsh
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Hi David!
Thank you so much for replying- it makes me feel good that you've taken the time to respond to both posts that I have put up. I will have my biopsy results back 8/6, hopefully- and then we'll know more! All I can do now is continue waiting.... I just started taking 2 probiotics and my GI wrote me an rx for dicyclomine, but so far I feel no different from the dicyclomine. Fingers crossed!
07-26-2012, 04:09 PM   #4
tiloah
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I think NSAID use is a pretty unlikely culprit at this point. Especially (on reading your other posts) given the thickening of your TI and that the TI is the most common place where Crohn's presents.

It sounds like you're smart and you're not going to put up with nonsense from your doctors. That can be really important as IBDers can tend to get the run around (including me after I was diagnosed while I was needing surgery!) I do really hope it's not IBD though. I hope your biopsy offers some clarity.
08-06-2012, 12:08 PM   #5
Lydia_Marsh
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Hey guys!

So my biopsy results were available today from the scope- they came back "inconclusive" so my GI is treating this as NSAID overuse. I'm really super frustrated at this point. I would be thrilled to have a non-Crohn's diagnosis but I'm starting to feel like I'm getting the run-around.

I suffer from terrible migraines and have for several years but I never take meds until it gets unbearable. It took me 3 months to go through a 60 tablet bottle of CVS Migraine pills, and I was handing them out to 2 of my coworkers on a weekly basis as well. Does anyone have any idea how much is too much on the NSAIDS? By no means do I feel like I have "overused" them, but I wonder if some people are genetically predisposed to these sort of bleeds/ulcers? If this is this the case and I'm just super sensitive then I'm in a catch 22 because now I'll have to figure out an acceptable medicine to relieve my migraines when they become crippling.

Feeling hopeless at this point Thanks for any insight you might be able to provide.
08-06-2012, 12:10 PM   #6
David
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Hi Lydia,

Other than the TI erosion and migraines, what symptoms do you experience?
08-06-2012, 12:33 PM   #7
Lydia_Marsh
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Hi Lydia,

Other than the TI erosion and migraines, what symptoms do you experience?

Well when this all started, I was having stabbing pain in my left side, under my ribs. Then bouts of diarrhea, followed by days of constipation, then blood in my stool. The symptoms of pain lasted for a month, then the blood appeared, and that's when I decided I needed a dr. to check me out.

Now I am still having the same diarrhea/constipation issues. Haven't noticed any more blood (that happened two times that I could see). I am EXTREMELY tired (like sleep for 12 hours during the weekend and still can't find energy) and have been having intermittent leg pain, which alternates from my right to left leg. My abdomen feels distended and full, but the tugging/pulling sensation has subsided. Luckily during all of this my migraines have been spaced out and not as crippling- it's like they've taken a backseat to the GI issues.

Last edited by Lydia_Marsh; 08-06-2012 at 12:37 PM. Reason: Original reply did not answer David's question
08-06-2012, 02:34 PM   #8
David
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While I guess it could be, your original post and now what you said above doesn't really sound like NSAID induced colitis to me, but I'm no expert.

I'd get a second opinion if you're not comfortable with the diagnosis.
08-07-2012, 11:14 AM   #9
Lydia_Marsh
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As of today my diagnosis is "Ileitis." My GI explained that there was a lack of granulomas in my biopsy, so he is hesitant to make a diagnosis of Crohn's. I have a follow-up with him in October. I guess it's just day by day now.
08-07-2012, 01:46 PM   #10
David
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You might want to discuss with your GI that granulomas are only found in a minority of people with Crohn's Disease. There are various studies showcasing this. This study found only 24.3% of people with Crohn's Disease had granulomas.

I'd be ok with him being conservative with a diagnosis as long as he's doing other testing. But if he is being conservative because of a lack of granulomas and is doing a, "Let's wait and see what happens to you" in addition to what else was brought up in this thread, then I think a second opinion is a good idea. I'm not of the opinion that Crohn's Disease is a, "Let's wait and see if it gets worse so we know it's Crohn's" type of disease. It's not to be trifled with and the sooner it can be properly controlled, the better.
08-07-2012, 02:17 PM   #11
Lydia_Marsh
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Thank you for the response, David. At this point he has given me the "Let's wait and see" response. I have done some research today on granulomas and, as you mentioned, it seems that they are not always present. My hope is that IF this is Crohn's disease, I can get it under control quickly before my symptoms exacerbate. I do truly believe in my gut (no pun intended) and in my brain that I am experiencing early onset symptoms of Crohn's and my biggest fear is letting the disease terrorize my body while I wait around for a doctor to decide what to do next.

Luckily, I have an acquaintance who is the head of nursing at a hospital here in Baltimore, and he has hooked me up with a doctor specializing in Crohn's in female patients. I am scheduling an appointment with her before the end of this week.

As always, David, thank you for taking the time to respond to me. I very much appreciate your kind words and advice.
08-07-2012, 02:53 PM   #12
David
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That's fantastic, I'm really glad you're getting in with that doctor!

Maybe the first doctor is 100% correct and the new doctor will say exactly the same. At least at that point your mind can be put at some ease. Let's hope it's not Crohn's and something much easier to deal with. Either way, it needs to be dealt with. I'm glad you're making sure that happens, good for you.
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