Consultant appt

Hi I've just had my consultant appt and he said he don't believe I have crohns and its more likely I had a severe infection. He said my case was discussed in a meeting and agreed there's no evidence of crohns. I have acute terminal ileitis2, inflammation and erytherma at mouth of terminal ileum. he said I shouldn't label myself with crohns even though I was previously told its highly likely its crohns as it can affect my health insurance etc. Wen I had my colonoscopy they couldn't visualise my small bowel. My calproctecin test was greater than 6000 wen I first had symptoms which is the highest it goes even though he said i have mild inflammation which dont make sense. I have 2 questions: firstly hes sent me for an MRI but don't understand why he didn't just suggest me doing another calproctecin test as surely if it was infection this should be back to normal and if I still have inflammation this wld exclude infection? Also he said an infection usually resolves on its own without the need to treat it with antibiotics. Is this true because I read that if an infection is left it can cause chronic inflammation "crohns"

Thanks for reply. OK that makes more sense to me. Of course, inflammation mite not show up in the stool sample if I'm in remission. I thought with crohns the inflammation is constantly present. I have my MRI in 4 weeks and consultant appt again in 7 weeks. Biopsies were taken and colonoscopy showed inflammation. He said he didn't think it was crohns because I had symptoms that suddenly came on that lasted a week and disappeared. He said crohns symptoms wouldn't just disappear after a week and I don't have problems with my bowels since December. I didn't think crohns was always genetic? Can I ask why your nor convinced he's right?

It states histology of the sample revealed "acute terminal ileitis2 that's all it says. The consultant said it also States there's not a sniff of evidence of crohns. I weren't sure there was an actual test for crohns but he sounds quite convinced its infection. I suppose I need to wait for MRI. No I had symptoms only 1 week and cause I have inflammation in small bowel and calproctecin of greater than 6000 i was told it was crohns at first. He said my stomach cramps I've been getting is probably my ibs. I've had no problems with my bowels since December. I was only going by wat I was originally told.

I agree they couldn't reach it but they saw inflammation at the mouth of terminal ileum so assume they took biopsies from there. It was done up 2 the caecum. I think there going by the sample tested but that only states acute inflammation and my current bowel movements and that it suddenly disappeared after a week. I do get stomach cramps off and on and he said its probably my IBS. I did mention some bleeding but he said if its on toilet paper then it's nothing even though I was told previously it was coming from future up. Ill update you once I have MRI. Out of curiosity did you have a celiac test? I did wonder if I had that

Very important to say also that after they had their meeting and discussed my case a nurse called me and said the consultant wants to see me as its highly likely I have crohns and my stool sample was so high. I tried to make appt with that particular consultant and waited about a week to hear from the booking team. 1 week is too long lol so phoned consultants secretary and asked him to refer me to another consultant which was nearer to my House. I only had to wait 3 days for that appt. And then I heard different news that its highly likely infection. I forgot to tell him this as I had a list of other questions. I suppose I was very baffled as I had infection then crohns and now infection again. Tbh I don't think they really know! I'll find out with MRI. Worried now cause his last words to me weren't very comforting if I do have crohns.

Yeah, antibiotics aren't something which should be taken at the drop of a hat. If it's a bacterial infection and it's over, there's no point in taking antibiotics. If it's a viral infection, there's no point in taking antibiotics at any time. And if it's Crohn's, there's usually no point in taking antibiotics, as Crohn's isn't an infection (or if it is a specialist infection, such as MAP, then common antibiotics wouldn't work).

As far as I can tell, the consultant is doing the right thing by trying to find out what hedgehog has (or possibly had) first before starting treatment. I know when I went through the diagnostic procedures I wasn't given any medication until I had an actual Crohn's diagnosis.

@hedgehog - Well, the terminal ileum is a few inches long; if they couldn't get the scope in I'm not sure I would assume that any biopsies were taken from there. I had one colonoscopy where the report said my terminal ileum hadn't been visualised - unfortunately I never did find out whether that was because they couldn't get a scope into the TI or whether they just decided not to do it for whatever reason. (That was at the hospital which kept on giving me contradictory info; it didn't exactly help that I saw a different person nearly every time I went there either).

In your case, it's a shame you didn't get to see the original consultant. There may be a reason he had a longer waiting time, i.e. perhaps he is a better doctor. Who knows. As long as the other consultant is part of the same hospital it shouldn't matter too much. It's also a shame your MRI scan isn't quicker, but 4 weeks is a standard waiting time in my experience. What I do when waiting for tests or appointments is to try to put it out of my mind until about a week before, then I start getting mentally ready for it. There's nothing you can really do now until you have your MRI. Obviously you can ask us questions, but we are somewhat limited in what we can tell you - we can't tell you if you have Crohn's or not. I actually hope that you don't, and that it was a temporary infection all along.

As for coeliac disease, yeah I was screened for that (negative in my case). You probably ought to have been screened too, but ask the consultant about it next time you see him.

I got diagnosed within a few months. Had a colonoscopy and a small bowel follow-through (that's where you drink two glasses of foul liquid chalk, AKA barium, and your bowels are x-rayed while the barium is going through them). When I had my follow-up appointment at the hospital, the consultant told me I had Crohn's disease. I had few symptoms at the time, so I remember being kind of baffled by the diagnosis. In fact for a few years I continued to have doubts over whether it was Crohn's or not. I really thought it was something which would go away one day and not come back - that's how dumb I was.

So yeah. Not sure what I'm trying to say here, other than we can get things wrong. Anyway, good luck :p

You should have made a new topic, as your post is not really relevant to this thread. I'm also not sure if the mods will let your link stand. I had a look anyway. I'm usually incredible sceptical of anyone who has anything to sell (hi joel!), but your heart seems to be in the right place with this one. I must admit, I am in slight awe of your dedication to creating nice tasting food for kids on the SCD diet, and trying to make kids on special diets feel included. And your son looks like a healthy, well-nourished kid. I can only wish you both good luck really. It is important to take Crohn's disease seriously and to get regular check ups to make sure his inflammation is being controlled.

I'm getting more and more off-topic here myself, but if I have just one bit of advice to give it is to make the food as affordable as you can: poor children get Crohn's disease as well.

"love the name btw" - Cheers :p

No, I'm absolutely sure about it now but I was diagnosed almost 17 years ago in June 2000. I didn't really present with the typical symptoms - I didn't feel ill, have any abdominal pain, lose any weight, bleeding in the stools, extreme urgency, etc. I just had liquid BMs once or twice a day. Considering some of the symptoms that I see get fobbed off as IBS, it was amazing I had a GP who took me seriously at all. But he did, and so I had all the tests which led to my diagnosis.

The reason why I didn't think it was Crohn's was because it seemed too mild for that. Another thing which bothered me was that my diarrhoea never went away, not even for a few days. Everything I'd read about Crohn's said it was a relapsing-remitting disease and even an Australian ex-IBD nurse I spoke to online said my continual diarrhoea wasn't normal in her experience of IBD patients. (I then spoke to my actual IBD nurse who told me not to worry about it; it didn't mean I didn't have Crohn's, or something like that.)

What I didn't know at the time was that a) my Crohn's disease had been diagnosed unusually early and b) Crohn's can wreak its havoc slowly, over years rather than months. Sometimes 'mild' disease can stay mild; other times it's just disease which hasn't had enough time to become moderate or severe yet.

You might have coeliac, but it's fairly unlikely. Your nurse is right that coeliac affects the small bowel higher up than where Crohn's usually affects. On the other hand, it's not uncommon for folks with Crohn's to develop temporary food intolerances to all kinds of things when flaring. Once they are in remission, many of the food intolerances disappear. Some folks do better by staying off gluten or dairy or whatever, even in remission. For me it seems to make no difference, so I eat (within reason) anything.

So it is possible to have mild or even no symptoms and have crohns

Yeah it is, although it very rarely stays that way forever.

If you do get a diagnosis of Crohn's, come back and tell us and we'll give you advice on meds <_<. I don't want to jump the gun but with your history it seems obvious to me that you should start off on something stronger than mesalazine. It probably won't be obvious to your consultant, however. But we'll cross that bridge if you come to it.

Good luck :p

Yes I do, but on the other hand if you go in demanding to start on Remicade that probably won't work either. The NHS have a particular order in which drugs are to be prescribed; there used to be a 'map of medicine' on its website, which outlined the step by step treatment for numerous conditions. (Last time I tried to look it up about a year ago, it was no longer available to the general public for viewing.)

A very simplified flow chart for Crohn's might go like this:

Step 1: Consider prescribing mesalazine -------> (if no response to step 1 go to step 2) -------> Step 2: consider prescribing 6MP or azathioprine --------->(if no response go to step 3) --------> Step 3: consider a biologic or surgery ----> blah blah blah

That is very simplified indeed. It ignores disease severity, fistulising disease (which you don't appear to have), other treatments such as antibiotics, steroids and elementary diets, referrals for tests or to other specialists, extra-intestinal manifestations, etc. But hopefully you get the idea. Chances are if you get diagnosed with Crohn's, your consultant is going to want to start at step 1, despite it being widely known by everyone except UK GIs that mesalazine is almost as useless as placebo for treating Crohn's disease.

It's also a funding issue. Biologics are way more expensive than mesalazines, so the GI has to justify to the trust why you need to go on a biologic. If you haven't tried previous meds first, it's much harder for the GI to provide the necessary rationale. On top of that, it's the usual postcode lottery whereby some hospitals get far more funding than others. I'm not sure what the situation is like nowadays but in 2010 I couldn't get Remicade for love or money at my previous hospital. Switched to my current hospital in 2011 and my consultant applied for me to go on Remicade almost straight away.

So yeah... Talk about massively jumping the gun, which I didn't want to do before you got a Crohn's diagnosis (which you still might not have). But long story short, if you do have Crohn's find out if your hospital will prescribe biologics (that's Remicade or Humira most likely) to IBD patients. If they don't, find a hospital which does - it's important. Second of all, be prepared to waste some time moving up the medication stepladder. It's time-consuming and it's boring, but it's probably necessary.

Yes its baffling to me as it was very severe with an extremely high calproctecin for my symptoms to suddenly disappear after 1 week and currently have only mild symptoms. That's why Dr thinks its infection. Even though I had a severe flare I don't think I have severe crohns "going by my current symptoms. He said its mild inflammation but he couldn't Even visualise the small bowel so I'm taking wat he said with a pinch of salt. I did have severe inflammation in December whether that has got better on its own I don't know. Thanks for advice on meds. I'll mention it to my consultant. Thanks xx

Hi Hedgehog. Truth be told, I'm a bit out of my depth with this one. Docs do seem to want to have evidence of Crohn's at a microscopic level (i.e. biopsies) before they hand out a Crohn's diagnosis. I have heard of people getting a Crohn's diagnosis with negative biopsies, but I have no idea how common this is. Indeterminate colitis is definitely a thing - that is, when it's not clear from the biopsies whether it's Crohn's or ulcerative colitis. In fact, for reasons I won't bore you with, I think I may have had indeterminate colitis - but my Crohn's diagnosis was never changed (except for about 10 minutes by my surgeon).

At least your docs are doing all the right tests. A repeat colonoscopy sounds like a good idea.