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Crohn's Disease Forum » General IBD Discussion » Colonoscopy results - i'd like some input please!


 
01-16-2013, 07:26 AM   #1
Jam300
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Colonoscopy results - i'd like some input please!

Hello Everybody,

Just some quick background so everybody can be brought up to speed.

I was diagnosed with CD in 2007 by Colonoscopy which found inflammation in my TI. The only syptom I displayed was Orofacial Granulamatosis (a swelling of the lip), no GI problems. I was put on a two month course of Modulen IBD and then followed an elimination diet, my lips swelling went down a bit, but not entirely. I went back to eating whatever I wanted about four years ago. No meds or anything since the modulen.

I had a scope yesterday (I began to worry what years unmedicated may have done to me after casually browsing this forum 6 or so months ago). The scope found nothing and i'll quote from the report (for David's benefit ):

'A digital rectal examination was performed. The Colonoscope was inserted via the anus to the terminal ileum. The caecum was identified by ileal intubation. The scope was retroflexed into the rectum. The examination to the point of insertion was normal. No abnormalities detected.

Normal ileocolonoscopy. Normal ileal appearances. Biopsies taken.'

My follow up isn't until the 28th of March when the histology comes back from my biopsies. This is obviously very good news but i'm baffled if i'm honest and so it seems were the doctors. The guy doing the scope even said that had I not been diagnosed with Crohn's previously he would have said I didn't have it.

I presented swollen lips for three years before my diagnosis, so in total i've supposedly had CD for ten years. Yet i'm somehow in a full remission, despite years of poor diet, no lifestyle changes, drinking and smoking regularly and heavily. It sounds like i'm boasting, I really do not mean to, I know people on here struggle daily with this dreadful illness. But how is this possible? Is it all possible that I was misdiagnosed when I was young? I don't see how I can go ten years with Crohn's only presenting one superficial syptom (which is in itself barely noticeable anymore).

Can someone give me some more informed insight on this please? I can't wait until March to find out!
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01-16-2013, 08:18 AM   #2
xX_LittleMissValentine_Xx
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The thing is with crohn's is that in remission, you can have normal scopes.
It does seem to me strange that you were diagnosed with crohn's from not many symptoms, but as you said you were diagnosed with a colonoscopy you must have shown some signs of it for them to diagnose you with it.
It is a hard thing to diagnose and some people go through years trying to get diagnosed and don't show the signs for the doctors to clearly say it is IBD.
So maybe you have just been very lucky, in that they were able to diagnose it in the first place on very little symptoms, and that you have managed to be in remission for such a long time with very little symptoms.
Everyone is different and some people will have the disease more severely than others. I imagine there are a lot of people that live with crohn's their whole lives undiagnosed because their symptoms are not very bad.
I suppose there is always the chance that one day you will get worse symptoms. But no one knows what is around the corner!
Enjoy being symptom free is what I say!
I think you were right to want to get checked out from not having treatment for a long time though. I think that things can get worse without you really feeling it as I have developed fistulas while apparently being in remission.
Don't know if I have really answered your questions or not?
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01-16-2013, 08:40 AM   #3
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Hey, Jordan!

May I ask why they decided to do a colonoscopy when you were showing no GI symptoms? Did they suspect Crohn's based on the orofacial granulamatosis?

I wouldn't assume right away that you were misdiagnosed. Did they take biopsies that confirmed Crohn's (when they did the first colonoscopy)? Is the lip swelling still occurring?
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01-16-2013, 08:44 AM   #4
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Sounds like you are in remission but i don tthink anyone will be able to help until the biospsy comes back, It should be back already so i would call your GI and see if he can give you the results over the phone x
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01-16-2013, 09:48 AM   #5
Jam300
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Hey, Jordan!

May I ask why they decided to do a colonoscopy when you were showing no GI symptoms? Did they suspect Crohn's based on the orofacial granulamatosis?
Yeah they did, after a fair few years of trying to work out what it was that was causing it, they gave me a colonoscopy and decided Crohn's.

I wouldn't assume right away that you were misdiagnosed. Did they take biopsies that confirmed Crohn's (when they did the first colonoscopy)? Is the lip swelling still occurring?
I'm not sure if they took biopsies in the first one, all I know is that there was in inflammation in my TI. I still have swollen lips, but they aren't anywhere near as bad as they used to be, and haven't been for years.

I'm not assuming I don't have Crohn's, but I am very suprised that my scope shows nothing, having never been medicated. To me, from everything i've read on this forum, that just doesn't make any sense.
01-16-2013, 10:02 AM   #6
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If I were you, I'd ask at the next appointment if biopsies were taken when you were diagnosed. If so, it's very unlikely your diagnosis was wrong.

I'm just making guesses and assumptions here, so don't hold me to any of this or take it as fact, but... I think a lot of people with CD seem to have it for a while before showing symptoms. It seems that there is some trigger that sets the dormant disease off (often times stress, food poisoning, etc.). Personally, I experienced constipation as a small child then mild stomach pains for years before my symptoms got bad and really seemed to indicate Crohn's. The change in severity of symptoms happened when my home life became extremely stressful.

It might be possible that you have caught it before the disease has really come to the surface. It's also possible that it just is a mild and somewhat unusual case.

Are you planning or hoping to start a medication to maintain remission (assuming the biopsies come back positive)?

Also, when I was diagnosed I had ulcers and inflammation throughout my entire small intestine. I took medication for about a year and a half maybe, and still had Crohn's symptoms during that time. I had to stop my medication when I lost my medical insurance, and went without for another year or so. When I had a colonoscopy and a pill cam done over the summer, there was no evidence of Crohn's. My diagnosis was fairly definite, though - biopsies, blood work, and what was seen by the pill cam all confirmed. So it can happen.
01-16-2013, 10:16 AM   #7
Jam300
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Well I had intended to take medication accordingly, expecting fullwell to get a colonoscopy that showed inflammtion ect. Now I don't know what to do, because i'm not sure what to expect. My heads going round in circles right now. But yeah if the biopsies come back positive I will most probably go on to some sort of medication to stay this way, although i'll be very hesitant to try something like Azathioprine for something as unproblematic as my case. I'll most likely go on LDN. Do you have any suggestions.

I really am completely baffled right now.
01-16-2013, 10:21 AM   #8
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Pentasa / Asacol / the other mesalamine medications might be a good option for you. They're the most gentle medications used for CD/UC (you can read about these medications in the mesalamine section of the Treatment forum here). Usually they're used along with another medication when treating Crohn's (as they're best for UC), but since your case is a little different, I don't know if another medication would be needed or wanted. Might be worth bringing up with your doctor, if they don't mention it themselves.
01-16-2013, 11:18 AM   #9
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I was under the impression that Pentasa was recently proved to have a success rate similar to that of placebo? Medications a bit of a minefield really isn't it
01-16-2013, 11:23 AM   #10
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Hmmm, I haven't heard that one. The issue might be that it's used to treat Crohn's when it shouldn't be. It's approved only for UC, because it works by coating the top layer of the intestine in the medication. As UC only affects this layer, it works for that, but Crohn's can go deeper, so in many cases it just isn't enough. I'm looking it up now.

You're probably better off reading through the forum, but I found this: http://www.askapatient.com/viewratin...9&name=PENTASA It's nothing scientific or anything, just people who have been on Pentasa offering their opinions. What I found interesting about it is that the vast majority have Crohn's disease.
01-16-2013, 12:29 PM   #11
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Yeah, a Cochrane review of 1400 patients with Crohn's on mesalamine (the active ingredient in Pentasa) found it to be no better than placebo.

I think step one is waiting for the biopsy results to come back. If they come back normal, based upon everything you've said, I would question the original Crohn's diagnosis especially considering that if you do indeed have Orofacial Granulomatosis and they weren't using the term loosely (many do), then that should EXCLUDE Crohn's disease as a diagnosis.
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01-16-2013, 12:59 PM   #12
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Yeah, a Cochrane review of 1400 patients with Crohn's on mesalamine (the active ingredient in Pentasa) found it to be no better than placebo.
I guess now I know why it didn't work for me!

I didn't see that when looking it up (I'm at work and have to limit my googling). Does anyone happen to have a link to this information? I'd like to check it out. Thanks!
01-16-2013, 01:23 PM   #13
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I didn't see that when looking it up (I'm at work and have to limit my googling). Does anyone happen to have a link to this information? I'd like to check it out. Thanks!
http://summaries.cochrane.org/CD0088...crohns-disease
01-17-2013, 06:30 AM   #14
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Hi David, thanks for commenting!

I'm confused (had to work an incredibly early shift this morning). When you say using the term loosely, what exactly do you mean? From what I gather, OFG is a rather loose term and covers a lot of other conditions that aren't technically OFG is that what you meant?

So if I truely have OFG that excludes CD? But if I have an inflammation reffered to as OFG that isn't actually then I could have Crohn's, is that the jist?

Thank you for your patience
01-17-2013, 09:02 AM   #15
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You nailed it on all counts. Sorry for not being more clear.
01-17-2013, 02:34 PM   #16
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Ok, when you say you were diagnosed with crohns due to swollen lips, did you also have intestinal issues as well?? How did they diagnose you, was it through colonoscopy and biopseis?

I mean if you are saying that the ONLY symptom you had was lip swelling, well A lot of things can cause this besides crohns disease. How were you originally diagnosed?









Hello Everybody,

Just some quick background so everybody can be brought up to speed.

I was diagnosed with CD in 2007 by Colonoscopy which found inflammation in my TI. The only syptom I displayed was Orofacial Granulamatosis (a swelling of the lip), no GI problems. I was put on a two month course of Modulen IBD and then followed an elimination diet, my lips swelling went down a bit, but not entirely. I went back to eating whatever I wanted about four years ago. No meds or anything since the modulen.

I had a scope yesterday (I began to worry what years unmedicated may have done to me after casually browsing this forum 6 or so months ago). The scope found nothing and i'll quote from the report (for David's benefit ):

'A digital rectal examination was performed. The Colonoscope was inserted via the anus to the terminal ileum. The caecum was identified by ileal intubation. The scope was retroflexed into the rectum. The examination to the point of insertion was normal. No abnormalities detected.

Normal ileocolonoscopy. Normal ileal appearances. Biopsies taken.'

My follow up isn't until the 28th of March when the histology comes back from my biopsies. This is obviously very good news but i'm baffled if i'm honest and so it seems were the doctors. The guy doing the scope even said that had I not been diagnosed with Crohn's previously he would have said I didn't have it.

I presented swollen lips for three years before my diagnosis, so in total i've supposedly had CD for ten years. Yet i'm somehow in a full remission, despite years of poor diet, no lifestyle changes, drinking and smoking regularly and heavily. It sounds like i'm boasting, I really do not mean to, I know people on here struggle daily with this dreadful illness. But how is this possible? Is it all possible that I was misdiagnosed when I was young? I don't see how I can go ten years with Crohn's only presenting one superficial syptom (which is in itself barely noticeable anymore).

Can someone give me some more informed insight on this please? I can't wait until March to find out!
01-18-2013, 05:04 AM   #17
Jam300
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Hi Ihurt,

Think i've already answered your questions in my OP!


Hello Everybody,

I was diagnosed with CD in 2007 by Colonoscopy which found inflammation in my TI. The only syptom I displayed was Orofacial Granulamatosis (a swelling of the lip), no GI problems. I was put on a two month course of Modulen IBD and then followed an elimination diet, my lips swelling went down a bit, but not entirely. I went back to eating whatever I wanted about four years ago. No meds or anything since the modulen.
I'll happily answer anything else you have to ask?
01-18-2013, 05:10 AM   #18
Jam300
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You nailed it on all counts. Sorry for not being more clear.
You were perfectly clear David, it was me being a dope that meant I couldn't quite figure what you meant!

I know that a biopsy was taken from my lip when I was first diagnosed, is that helpful?

What do the biopsies actually show? If they do indicate Crohn's still, what would that mean, that i'm not actually in remission?
01-18-2013, 08:47 AM   #19
xX_LittleMissValentine_Xx
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Biopsies from the intestine show how deep the inflammation goes. In crohn's disease the inflammation can go the full thickness of the intestine. So if the biopsy is showing inflammation fairly deep, then that is an indication of crohn's disease.
I feel like I haven't explained that very well!
I'm not sure if they test for anything else. Just done a quick search online but could only find "distinctive cell changes known to occur in crohn's disease"
01-18-2013, 09:11 AM   #20
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Ahh, so i'm not sure to be in remission then? Didn't realise how important these biopsies were to the overall findings of the scope!
01-20-2013, 08:01 PM   #21
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Jam300,
Of course you need the info from the biopsies from your scopes;however, I believe that from the info that you have given here that you did have Crohn's disease and that the treatment regime of Enteral Nutrition (the Modulen) followed by the elimination diet is what put you into remission.

Dr. John Hunter at Addenbrooke's Hospital in the U.K. advocates for this treatment program: http://www.crohns.org.uk/crohns_dise...tional_therapy

I also use this treatment approach and I also have achieved remission, however I still must follow a restricted diet.

My understanding is that for some people after they achieve remission and stay on the diet for a year or more, they can resume a full diet without any problems. Some relapse in the future, some do not.

I suggest that you continue to be monitored periodically no matter what the current biopsies show as the inflammation can return and cause scarring without you being aware of it immediately.

May you enjoy your good health and long may it last.
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01-25-2013, 07:23 AM   #22
Jam300
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An update:

Just got a call from the hospital, my MRI results are in and have been looked over by my doctor. Everything was completely normal.

Only after I got off the phone did I begin to wonder what exactly they'd be looking for in a Small Bowel Study? I'd imagine stricturing ect? Can inflammation show up on an MRI?

Still got a few more days for my histology, fingers crossed!
01-25-2013, 08:33 AM   #23
xX_LittleMissValentine_Xx
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Thats great news!
I expect they would be looking for any abnormalities, so yes strictures, maybe fistulas. And yes inflammation can show on an MRI. The first one I had was instead of a colonoscopy as it was thought it would be less invasive.
01-25-2013, 08:58 AM   #24
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Well that's good then, i'd imagine it was also to check that my CD hadn't progressed up the tract, without doing an endoscopy unless it was needed.

2/3 tests clear, just to find out what the big one will tell me now.
01-25-2013, 03:15 PM   #25
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Very bad day for me, i'm sorry to say.

Had been feeling very good the last couple of days, but have thought about CD non-stop all day. Have felt very miserable and can't stop stressing about my results. Sigh.
01-25-2013, 03:17 PM   #26
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Hey, Jam! Sorry you're so stressed over this. Sounds like you've had good news so far, though!
01-25-2013, 03:25 PM   #27
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I've had very good news so far Sarah, and I know i'm being silly, but I seem to go on cycles of four of five days feeling good followed by two being utterly miserable. On those days, I just can't do anything other than think about Crohn's and how it may affect my life, medicatiosn, food, supplements, travel, work... its just too much some times and it scares me so much.

It's wierd, I know this isn't the end of the world. But sometimes I just can't help but look at it that way. Melodramatic, eh?
01-25-2013, 03:30 PM   #28
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I'm so sorry, Jam. I know you're worried, but try to think about how mild a case it is, if it even is Crohn's. It seems unlikely that you would have to make any major lifestyle changes if you don't want to.

I think you're allowed to be melodramatic in this situation!
01-25-2013, 03:39 PM   #29
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You're a sweetheart Sarah, thank you. Funnily enough you're saying everything the sensible part of my brain says, but you know when you just can't listen to that part even though you know it makes sense?

For everytime I tell myself 'you're mild i'm sure you'll be fine' I get a 'but for how long?' from the back of my mind. I go cold and start panicking and googling.

I'm going to go out for a bit, I need some air. Thank you for replying Sarah, you've been a great help over the last few weeks.
01-25-2013, 03:43 PM   #30
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I'm glad I can help!

And stop googling, that's how you're scaring yourself. I'm joking - it really is useful, but google also has a tendency to tell you that you have the flu when you ask about cold symptoms, if you get what I mean.
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