Does anyone get upper abdominal pain with terminal ileum crohns?

[Nellie]

Hi there,

This is my first time to the forum. I m really pleased to be sharing info. I ve had crohns in my terminal ileum for 13 years. No operations but a numbers of tests and different medication including infliximab.i ve been trying with no medication recently as last Mri showed no active crohns but have just started on Entocort. This is day 7 and beginning to feel improvement. I was wondering if anyone else shares my symptoms- tenderness in lower right, bloating and pain in upper middle abdomen. I sometimes have acid reflux and although no diarrhoea I do have urgency for toilet most mornings. I can sometimes feel a painful lump in lower right which comes and goes. I realise my symptoms are not as bad as lots of you and for this reason I ve assumed its IBS some of the time. However nothing I have tried for IBS ( and I ve tried plenty) ever works and the steroids do. In the past I ve have high levels of ESR in blood and also high levels of something in blood that has led Drs to say I ve got gallstones and pancreatitis.
I m so confused as I ve never been given a clear explanation for the constant pain in my tummy. Could it be referred pain or maybe pain as food is backed up due to narrowing further down? If anyone has similar symptoms I d really like to hear from you.:wink::wink:

 

[Crohns08]

I know steroids can produce stomach acid though I am not sure if Entocort does since it's not systemic like Prednisone. However you might have a stomach ulcer, that can be the cause of upper stomach pain. Regardless, I'd make it known what you're feeling and taking to your doc and see what can be done.

 

[crohns4ever]

I am currently dealing with the same thing as your dealing with pain upper and lower right, I had a ct scan last Friday and it showed narrowing in my upper colon. My gi put me on some predasone in hopes it will slowly start to clear up. I've had crohns since 1998 I am no Dr but it sure sounds like some narrowing from crohns. Do you have thin stools when you go? After 13 years and no surgery your lucky. I had my surgery year after.

 

[Nellie]

Thank you for your replies. I had an endoscopy some years ago as ulcer was suspected but nothing was found. I ve been on a long course of both omeprzole and lansoprazole with no relief so I don t think it's acid. The steroids seem to help the upper pain rather than causing it so again I don't think it s a side effect of steroid. I m sorry to hear there's narrowing in your colon, I wondering if narrowing in the terminal ileum (which I know I have) can cause the upper pain? It's funny but if the lower right is pressed I feel the pain in my stomach area. Thanks again for your replies and yep I know I m lucky to have had no surgery.

 

[24601]

Welcome to the forum!

I do think it could be pain from the bowel being dilated upstream of the narrowing or alternatively referred pain from that narrowing as you say.

Did the MRI show a stricture? When a narrowing is observed on repeated imaging and you have no signs of active disease AND you're symptomatic and finding those symptoms difficult to live with, it can mean that it's the right time for surgery and you would benefit from having the narrowed section removed or widened. Definitely something to talk to your doctor about, I think.

Good luck! Hope you start getting some answers from your doctors.

 

[Nellie]

Thank you for your reply. I m a bit confused as to what the MRI and colonoscopy did show. I need to get answers. I m pretty sure it showed a small area of thickening and initial report from colonoscopy said they were unable to go further when reached terminal ileum " due to ? ". I saw an IBD nurse who gave me the results and she just said no active crohns so it must be IBS. I ve since tried FODMAP diet and still don't eat wheat but it makes no difference. Really doesn't t seem like IBS to me. My consultant has offered me another MRI so hopefully that will highlight any further narrowing. Thanks again.

 

[Nancye50]

I have terminal ileum Crohn's, LRQ pain including the hard lump when it's bad and the stomach pain I get is kind of in the middle of my abdomen. I really thought it was acid reflux or stomach-related before I was diagnosed.
Definitely get some clarification and a treatment plan!

 

[DustyKat]

Hey Nellie. :ghug:

It is not uncommon with terminal ileum Crohn’s to have pain around your navel area. But also to your question about pain higher in the abdomen than that, my daughter has ileal Crohn’s and prior to her diagnosis the only place she experienced pain for the majority of the time was her upper abdomen, literally her stomach. She only had Crohn’s in her terminal ileum so yes, it is possible to have pain referred well away from where your Crohn’s is located.

I do think ‘backing up’ may play a part in this but it is likely there are other forces at play as issues in this area of the bowel can have the potential to cause EIM’s (Extra Intestinal Manifestations) in organs such as the liver/gallbladder and pancreas. Just my musings but I do wonder if disruptions in these organs affect the ability to breakdown food, thinking lack of digestive enzymes here that are secreted by the pancreas and bile by the liver/gallbladder, which in turn creates pain as the digestive process tries to take place.

I think it would be best to start with getting answers as you are already thinking. Find out exactly what the tests showed and where you are currently at with your disease. I see you have said you have narrowing, with no active disease that will mean you have scar tissue. No medication will penetrate scar tissue and while ever it is asymptomatic you can live with it but if the current issues you are having do tie back to the narrowing then unfortunately you will have to deal with it surgically.
I would also head back to he GI and have an upper and lower scope done and then discuss a treatment plan from there.

Dusty. xxx

 

[Nellie]

Hello dusty and Nancy,

Thanks for your replies. For a long time I ve thought my upper abdominal pain was a different problem or caused by anxiety. Dusty, what you say about the crohns affecting other organs makes sense to me. I ve had raised amylase in the blood in the past causing Drs to say I have pancreatitus and several years ago they found a gallstone although consultant said it was an innocent bystander. Have to agree as then a dose of Entocort cleared the problem.

I think my way forward is a blood test to check function of liver, pancreas and gallbladder as well as ESR check for crohns activity. I will then have an MRI which should show any strictures. I m managing to live with it for now by changing my diet and definitely not eating too much at once. Still on Entocort which I think are helping a little.
If blood test shows a problem with digestion does anyone know, are there any pills to take to help the body with digestion? I ve heard about digestive enzymes which can be bought over the counter but are they any good?

Thanks again.

Nellie

 

[DustyKat]

There isn’t a blood test that would give a clue to how well your digestion side of things are functioning. But have you been tested for H Pylori infection?

I still think that scopes are something that need to be done. Whilst they won’t visualise most of the small bowel they are still only test where the GI can actually visualise your lower bowel and upper GI tract and take samples of tissue.

There have been many people on the forum that have found digestive enzymes helpful, I actually meant to mention it in my last post.

Dusty. xxx

 

[buttER]

Hi there

How long ago was your colonoscopy?
I have a pain in the upper abdomen (just lower than where the ribs meet in the middle, kind of where you think the stomach should be) and it is from inflammation half way in the large intestine.

 

[Nellie]

Hi again,

I was thinking about digestive enzymes, has anyone found them useful? Where would I get them from? I know they can be bought from health shops or is there anything better on prescription.

My colonoscopy was about 11 months ago. The large intestine was all clear and yet I was having the same symptoms so I m inclined to think it's not that. I m pretty sure the pain is connected to the crohns in TI. My question is that my symptoms come and go. I know this is partly dependant on what I eat but even so, if the problem is narrowing of the bowel wouldn t the pain be more consistent? I ve had times in the last year where I ve been eating normally with no symptoms. So frustrating!

I ve also been offered a breath test, anybody had this?

Thanks everyone for your help.

Nellie

 

[buttER]

Hi Nellie

There are lots of different breath tests - lactose intolerance and H pylori infection to name just two.