Advice please

[Floyd10]

Hello everyone

I recently had a colonoscopy and the results came back clear. That's great news but now I feel as if I'm back where I started 10 months ago. The doctor (who was previously 99% sure I had Crohn's) now said he doesn't really know what's wrong with me.

I've a CT Scan which showed a thickening in the smaller intestine, and a small bowel series which didn't really show up anything.

Can any of you advise if there are further tests I should enquire about or what I could possibly have. Could the Colonoscopy have missed something? I've had right sided abdominal pain for 10 months and have lost 2st in that time.

Thanks in advance

 

[mccindy]

It's possible a pill cam might show something. Crohn's can show up in and affect the small intestine as well, which wouldn't be visible during a colonscopy, which stops at the terminal ileum.

I'm in the same boat as you, many symtpoms but no diagnosis.

 

[UnXmas]

Depending on what the small bowel series entailed, you might find out more from an upper endoscopy. Did your small bowel series involve X-rays? (I'm not sure what exactly the term refers to). An endoscopy with biopsies can pick up on things that X-rays might miss. Crohn's can be situated anywhere in your digestive tract, and a colonoscopy does not look at your small intestine or stomach or anything else further up. An upper endoscopy (a camera down your throat) to examine and take biopsies from the stomach and small intestine - and also your oesophagus if you have problems there - can find things that would not be found with a colonoscopy, but which the small bowel series might well have already covered.

Have you had blood tests and if so have they shown signs of inflammation, infection, or nutritional deficiencies? Regular blood tests will rarely point to a specific diagnosis, but they can give general clues to your state of health.

What is your doctor's plan now? Does he think you need more tests?
Did he think the thickening of your small intestine to be significant? If he can't reach a diagnosis, is he prepared to try to treat your symptoms?

 

[Kero]

Hope you get some answers soon! Being a sitting duck with no answers really sucks, I'm in the same boat

 

[Floyd10]

Depending on what the small bowel series entailed, you might find out more from an upper endoscopy. Did your small bowel series involve X-rays? (I'm not sure what exactly the term refers to). An endoscopy with biopsies can pick up on things that X-rays might miss. Crohn's can be situated anywhere in your digestive tract, and a colonoscopy does not look at your small intestine or stomach or anything else further up. An upper endoscopy (a camera down your throat) to examine and take biopsies from the stomach and small intestine - and also your oesophagus if you have problems there - can find things that would not be found with a colonoscopy, but which the small bowel series might well have already covered.

Have you had blood tests and if so have they shown signs of inflammation, infection, or nutritional deficiencies? Regular blood tests will rarely point to a specific diagnosis, but they can give general clues to your state of health.

What is your doctor's plan now? Does he think you need more tests?
Did he think the thickening of your small intestine to be significant? If he can't reach a diagnosis, is he prepared to try to treat your symptoms?

I didn't actually get to see my normal doctor at the clinic, another one filled in for him. It really was appalling stuff, he just kept shrugging his shoulders and saying, I don't know, to any questions. He also advised me to go off my current meds (Asacol) as they weren't suitable and just take Paracetomol.

I think i'm going to insist on another meeting with my normal doctor, and put forward some of the suggestions you've mentioned above.

 

[UnXmas]

It sounds like you saw a pretty useless doctor. At least he admitted he didn't know - if he's not a specialist, he's not obliged to know everything about Inflammatory Bowel Disease and related conditions, and the fact that he admitted that and would rather refrain from taking action that could potentially make things worse for you is understandable, but he should have gone one step further and made sure he referred you on to another doctor, one with more knowledge about IBD!

Hopefully you'll have more luck getting things done when you see your normal doctor. Just a word of warning: I have found that some doctors don't particularly like it when patients make suggestions about the tests they need or about what might be wrong with them. If I were in your situation, I think I would really emphasise the weight loss (unintended weight loss is a symptom that a doctor must treat as potentially serious) and I'd also emphasise any symptoms that you have which could indicate a problem in the upper digestive system. Hopefully he'll be reminded that he's only had a really good look at your lower bowel so far. I'd also recommend phrasing things as questions - for example, rather than telling him you think you need an endoscopy, ask him if he thinks something might be wrong with your stomach or small intestine, or ask him if he's ruled out Crohn's throughout your digestive system.

Of course you may have a great doctor who is genuinely happy to hear intelligent suggestions made by his patients, but I've learned that, to be on the safe side, it's usually worth refraining from making direct requests for tests.

Hopefully you'll get some answers soon.

 

[Aussie]

Hi Floyd, a good start would be a faecal calprotectin which will quantify the degree of inflammation within your bowel (both small and large).

Then, you need to know what area of small bowel was inflamed on the CT scan (i.e. was it the terminal ileum, the small bowel just before the large bowel) because if it's not, then you wouldn't expect the colonoscopy to see anything (as it examines the colon and usually just the end of the terminal ileum). Also, was the CT a dedicated scan for the small bowel or just a plain abdo CT?

If the inflammation on the CT was in the terminal ileum, did the colonoscopist get into the terminal ileum during the colonoscopy?

If calprotectin normal, unlikely active Crohn's.
If calprotectin elevated and CT was not a dedicated scan, ask for either a CT or MR enterography (would favour MR if you are young).
If colonoscopist didn't get into terminal ileum, repeat colonoscopy.
If calprotectin elevated and repeat imaging unremarkable, but symptoms/history strongly suggest Crohn's, consider a capsule endoscopy to directly view the mucosa of the small bowel.

Best wishes.

 

[ronroush7]

It's possible a pill cam might show something. Crohn's can show up in and affect the small intestine as well, which wouldn't be visible during a colonscopy, which stops at the terminal ileum.

I'm in the same boat as you, many symtpoms but no diagnosis.

I was going to suggest an endoscopy. Hope you are better soon


2

 

[Floyd10]

Hi Floyd, a good start would be a faecal calprotectin which will quantify the degree of inflammation within your bowel (both small and large).

Then, you need to know what area of small bowel was inflamed on the CT scan (i.e. was it the terminal ileum, the small bowel just before the large bowel) because if it's not, then you wouldn't expect the colonoscopy to see anything (as it examines the colon and usually just the end of the terminal ileum). Also, was the CT a dedicated scan for the small bowel or just a plain abdo CT?

If the inflammation on the CT was in the terminal ileum, did the colonoscopist get into the terminal ileum during the colonoscopy?

If calprotectin normal, unlikely active Crohn's.
If calprotectin elevated and CT was not a dedicated scan, ask for either a CT or MR enterography (would favour MR if you are young).
If colonoscopist didn't get into terminal ileum, repeat colonoscopy.
If calprotectin elevated and repeat imaging unremarkable, but symptoms/history strongly suggest Crohn's, consider a capsule endoscopy to directly view the mucosa of the small bowel.

Best wishes.

The inflammation was in the Terminal Ileum from what I can remember. Do you think this would also mean that Pentasa would be more suitable than Asacol? I'm not that knowledgeable on these things.

By the way, thanks for all your great suggestions. I definitely feel more confident that there are plenty of options going forward :ghug:

 

[Ribo]

I was going to suggest an endoscopy. Hope you are better soon


2

There's another procedure called a double balloon enteroscopy or DBE. It's basically a colonoscopy that also can enter the small intestine through the use of a balloon system.

It's a fairly specialized test, so you would most likely need to be referred to a doctor that does them, but it allows for examination of several meters beyond the terminal ileum into the small bowel.

 

[Katie127]

There's another procedure called a double balloon enteroscopy or DBE. It's basically a colonoscopy that also can enter the small intestine through the use of a balloon system.

It's a fairly specialized test, so you would most likely need to be referred to a doctor that does them, but it allows for examination of several meters beyond the terminal ileum into the small bowel.

This is the procedure I ended up having at the Mayo Clinic in MN. My crohns is located basically mostly in the middle of my small intestine and while their were some areas they could see and biopsy during my colonoscopies and endoscopies the main areas of inflammation couldn't be reached by either scope (but were showing up on the CT scans and x-rays).

Basically my local GI didn't feel comfortable putting my on biologics until he was absolutely positive of my diagnosis, so he sent me for this test. They also did other extensive testing while I was there so they would be positive on what was wrong with me.

My advice would be to keep working with your doctor on getting you to a GI specialist who would be able to work with you on getting more extensive testing done. While I wouldn't necessarily ask for a specific test, I would and have asked my doctor's and my GI's opinion on things I've read about in my own research.

 

[UnXmas]

One other thing: be prepared that even with more extensive testing, you might not get answers. Many people find that after a while they start to desire a positive test result, and normal test results are unwanted. This isn't because people want to be sick - it's because they already know they are sick, and they want a positive test result in order to validate their illness and hopefully lead to treatment.

If you do find yourself feeling this way, it's perfectly natural. But it does mean you have to consider how you'll feel if you have more testing but get no answers. The fact that there are parts of your digestive system that have not yet been scrutinised does not necessarily mean than when they are seen they'll reveal disease. Diagnosis can be hard and complicated. If you are concerned about your health, keep getting tests done, and the more you have, the more chance that you will get answers eventually, but don't be put off if you get more normal test results.