Crohn's Disease Forum » Support Forum » Undiagnosed Club » Ulcers in ileum - Is this Crohns? need some advice

11-05-2013, 02:32 PM   #1
Join Date: Nov 2013
Ulcers in ileum - Is this Crohns? need some advice

I'm a 22 year old female and have joined this forum - hoping someone can possibly offer me some advice as I'm getting worried of the unknown.

For a long time I have had a very dodgy stomach and diarrhoea when I eat certain foods. I have gone through stages of it being particularly bad.. but can go for weeks without any stomach problems. I have managed to come to the conclusion that eating certain stodgy foods can set it off. If I am careful with what I eat my stomach is relatively almost always fine. This is something that got worse whilst I was at uni and at times was more persistent - this then led to a blood test which showed some slight inflammatory factors in my blood- the doctor said this could have potentially been from a cold or infection.

I have been keen to find out what the problem is for a long time so recently had a colonoscopy and a gastroscopy.

All results were completely normal apart from they found some apthous ulcers in my terminal ileum. Coeliac disease was completely ruled out after the operation.

I have never had any abdominal pain or cramping. No blood or mucus in stools. No tiredness/fatigue.. but I have had a very dodgy stomach for quite a while. I'm quite slim but have a very healthy appetite.

The doctor said there may be a possibility it could be Crohn's, which has really worried me. I am going travelling in a month for 6 months (flights are booked) -so there is a chance I may not be able to find out before I go. I am on the waiting list for a MRI scan at the moment.

Here's a little bit about my background:

* Went travelling 4 years ago to Laos, Thailand, Fiji, Singapore etc - I had a very bad stomach during this time - heard this is very common when changing the water etc.. however not sure if it is possible I have picked up and virus and never managed to get it out my system?
* I smoke during weekends (about 20ish / sometimes less ) and hardly any during the week. (The doctor mentioned this could have played a factor in the ulcers)
* I used to take ibroprofen quite regularly a few years ago for back pain. (The doctor said this could play a factor, however, I only take it now and again these days)

Is it quite likely that this could be Crohn's? Is it likely I am intolerant to certain food types? If it wasn't for the ulcers in my illium - Crohn's would not have been identified as a possibility. However I am showing inflammatory factors in my blood .

Would be very grateful for any advice or anyone who has had something similar/ or is in a similar situation. Just feeling very confused at the moment and have got myself into a bit of a worried state as I'm running out of time to solve the issue. Very sorry this is a long post!

Many thanks

Last edited by sunsetvista11; 11-05-2013 at 03:10 PM.
11-06-2013, 01:09 PM   #2
Join Date: Nov 2013
Just wondered if anyone had any opinion on this?
11-07-2013, 10:30 AM   #3
Join Date: Oct 2012

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Were biopsies taken during the colonoscopy? Usually biopsies from the colon (during colonoscopy) or upper digestive tract (endoscopy) would detect Crohn's if it's present. I'm not exactly sure how much of your digestive tract is covered by the gastroscopy - just the stomach? If that's so, it may be there is Crohn's in the small intestine that the tests you've had wouldn't have picked up on.

It sounds a bit odd that your doctor's reading of your results is possibly Crohn's - he couldn't be more specific?! Does he have a plan of what to do next?

It's really impossible to diagnose over the Internet - even just to give you an idea of possible causes of your symptoms. There are just so many conditions that cause digestive problems. Crohn's is one of the more common conditions, so it's usually on doctors' minds when they begin investigations. It can happen that Crohn's occurs without bleeding or loss of appetite, but without some of those more common symptoms, the diagnosis gets less certain.

The most common food types to cause problems are coeliac disease (reaction to the gluten in wheat and other grains as you already know) and lactose intolerance (reaction to lactose found in dairy products). There are tests for both these conditions that are relatively straight forward. People can react to all different kinds of foods - whether they have Crohn's or another digestive disorder, e.g. fatty stodgy foods may upset some people, a lot of people with Crohn's have trouble with fibre.

Trying to work out whether diet contributes to you symptoms is probably not a good idea at this stage, unless you notice really obvious, consistent reactions. Since you don't know what's wrong, or if food is even a factor at all, it will likely just add to confusion trying to alter your diet too much at this point (though at the same time, it can't hurt to avoid any foods that are notoriously hard to digest).

I think you really need to push your doctor for clarification on your test results and for further testing if the results so far are inconclusive. (Did he mention any other possible causes of the ulcers?)

Many people stay on this forum when they are undiagnosed - getting a diagnosis can be a long and frustrating process - so I hope you'll use the forum for support going through tests and managing your symptoms, whatever your diagnosis turns out to be.
11-07-2013, 04:48 PM   #4
Join Date: Nov 2013
Thank you so much for taking the time to reply, really appreciate your input. They did take biopsies from the colonoscopy and endoscopy but no abnormalities were shown. I know they covered as much as they possibility could - as I had both at the same time (so it did go further than the stomach)

The doctor was only concerned by the ulcers in my terminal ileum. He said he would like to take a closer look using an MRI scan.. but this doesn't look like a possibility in the near future as I am off in a month travelling. I'm just a bit concerned to go away without knowing why I have had stomach issues and now knowing I have these ulcers.

Are there certain things I could be doing to cure these ulcers? Just wondered if you have you ever heard of a case of someone who has had a bad stomach AND ulcers in the ileum that hasn't turned out to be crohns? Just finding it a bit strange that other than my upset stomach from time to time (at times can be severe) I haven't shown any other signs.

Sorry if I'm asking questions that can't be answered - just trying to get as much info as I can! I'll be sure to stay on this forum throughout

Many thanks again for your time and opinion
11-08-2013, 07:11 AM   #5
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As for curing the ulcers - it's really impossible to say without knowing what they are or what's causing them. There are treatments for peptic ulcers - though this is not the same thing as Crohn's disease. Ulcers caused by helicobacter pylori (had to look up the spelling on that one!) which can be aggravated by certain pain killers - especially aspirin and Ibuprofen. Medications and dietary adjustments can help with them - but they'd only cause upper abdominal pain, not diarrhoea as far as I know, so I imagine that it's a different type of ulceration that your doctor found in you (if it is the ulcers that are responsible for your symptoms).

Crohn's symptoms can vary and some people do experience times with few or no symptoms, so the fact that your symptoms aren't constant doesn't rule Crohn's out by itself, but I think usually you would see more symptoms with Crohn's than what you describe.

You have been tested though, and if your doctor is any good he'd have been following up with you if there was any chance that the ulcers are something sinister. I wouldn't put your travelling on hold, if you feel well enough to go. Diagnosis can take a long time, and one thing I learned is not to put life on hold in the hopes of getting answers or treatment. Just make sure you seek further medical help if your symptoms worsen significantly or if you develop new ones.
11-08-2013, 03:45 PM   #6
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Join Date: Oct 2013
Location: Lexington, Kentucky

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I have Crohn's and my ulcers are in the exact same spot, but I have additional symptoms than just that. I couldn't really say.
11-11-2013, 03:13 PM   #7
Join Date: Nov 2013
Thanks again for replying.

I had a phone call with the doctor a few days ago - he said he still 'suspects' crohns but cannot be entirely sure. He thinks the MRI scan will help determine whether or not it is, however, it may not...

I've received the date for my scan and it is mid December.. so I will have already left the country.This means I'll be away for 6 months without knowing what are the causes for the ulcers. Was wondering if I should be drinking alcohol? I hardly ever drink in the week - just at the weekends. I haven't noticed alcohol aggravating my stomach but should I avoid it anyway? I don't want to make the ulcers worse in any way.

The doctor has already told me to quit smoking - this is something I have tried to cut down on but have found a little difficult as I've been quite stressed the past few weeks. Quite annoying that one of my vices is not only bad for me but potentially very bad!

I've started to keep a food diary too - to try and eliminate certain foods (thought I may as well ) . strangely I have been absolutely fine! I know many people talk about 'flares' but I'm quite unfamiliar with what this is. I've even eaten food this week that I usually would avoid - and have still been fine.

If I have an upset stomach around 4-5 times a week - does this count as flaring? I know I've mentioned this before, but I have never experienced any stomach pain. Even when my tummy is at its worst, its never caused me any pain (although sometimes I have to go to the toilet 3-4 times a day). Its just something that is a nuisance , especially when I am out with friends. -

Thanks for advice on not putting my life on hold. I'm not cancelling my travels - or shortening them - but I will be careful to drink bottled water etc .. Judging by a lot of posts on this forum it seems being undiagnosed is very common!

Thanks again for the responses - any more are welcome!
11-11-2013, 10:45 PM   #8
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Join Date: Feb 2009
Location: Buenos Aires, Argentina
Ulcers in the terminal ileum is 99,99 % Crohn Disease. Look for a CD-expert doctor to have a better diagnosis.

Last edited by braveheart; 11-15-2013 at 09:00 PM.
11-12-2013, 06:58 AM   #9
Join Date: Oct 2012

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Quitting alcohol and cigarettes can only benefit your health. I know it's not that easy though. If you can go without alcohol, it can only help your situation (and will save you some money too!). I'd try to drink and smoke as little as you can. Some people with Crohn's can handle alcohol, some pay a price (symptoms are worse as a result of drinking) but feel it's worth it, and some can't drink at all because it makes them too sick. And some just don't drink alcohol regardless of how it affects Crohn's.

A flare is a time period in which Crohn's is active, there is inflammation and usually symptoms are much worse. This is in contrast to remission, where there is no active disease, and some people will be symptom-free during this time. remission can happen spontaneously or can be achieved with medication or surgery.

Having an upset stomach a few times a week does not, by itself, count as flaring. To know you are flaring, you'd first need to know you have Crohn's disease and that that's what's causing your symptoms. Flaring is defined by disease activity rather than symptoms. However, an upset stomach may be the only feature of a Crohn's flare, though more often there'd be pain and maybe some other symptoms as well.

You'll really need to push your doctor to confirm the diagnosis so that you know what you're dealing with and can set about treating it. As I said, this can take a while, so I don't think you should put off travelling, but be prepared to cut your trip short if your symptoms worsen or you get new ones. What sort of medical care will you have access to in the places you're going to? It's preferable to stick with one doctor when you have on-going illness, who can get to know you and your medical history, but if you will have the opportunity to see different doctors while you're away, you could still pursue diagnosis and treatment with while travelling. What did the doctor who found the ulcers plan to do next?

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