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Small bowel mri results

W

WombatStew

Bit of background in case it helps...

I've been under investigation for IBD for about 18 months now (initially told it was IBS or gastroenteritis). After continued symptoms I had a faecal calprotectin test which came back above average but gastroenterologist said it wasn't massively high (think 150ish). Had a sigmoidoscopy (should have been full colonoscopy but mix up on notes meant it didn't happen) that came back clear.
Took over 6 months to see gastro again and then had another faecal calprotectin which came back higher than the last and sent for a full colonoscopy (not impressed as I found it unbearably painful even with sedation both times). Then had a small bowel mri a few weeks after (this was planned by gastro to do both just happened to fall close to each other). This was back in early August.
Just had a phone call from my GP surgery today asking me to make an appointment to discuss new findings. Before I can see the doctor I have to have new bloods done. I'm a little bit uneasy because the next available GP appointment is in 2 weeks so I know I'm going to be mulling it over and stressing over it until then. Also it says on the blood test form 'clinical details - cystic kidneys'. I've never seen this on previous blood test forms so maybe something they picked up on the mri.

I'm not sure why I'm posting really but has anyone been diagnosed off a small bowel mri?
 
J

Julia S

Hi there, my small bowel MRI was key to my diagnosis. It showed inflammation (thickened intestinal wall) in a part of my ileum. That was the first test I did that showed anything out of the ordinary other than my fecal calprotectin that, like yours, was highish (190, then 105). All my blood work always comes back fine. The colonoscopy + biopsies I had done earlier also were fine. The tests that lead to my diagnosis were the MRI+calprotectin+capsule endoscopy which revealed I had mild inflammation throughout my small bowel and a stricture at my mid ileum. So, to sum up, yes, the MRI *could* be enough to diagnose you or you might need a further test like a capsule endoscopy. Good luck and keep us posted! Oh! And cystic kidneys is definitely something they saw on the MRI! No blood test can tell you that.
 
J

Julia S

Oh, if it makes you feel better (because, like you, I went through months of agony before I got a diagnosis) is something my doctor who is a specialist in IBD said:

"When we're having tough time diagnosing someone it is because of either of two reasons: either the patient is so severely sick that we cannot tell if it is Crohns or Ulcerative Colitis, or the patient has such mild Crohns that we can barely find inflammation to confirm a diagnosis."

I'm guessing that if after 18 months you still do not have a diagnosis you fall into the second category. So that's something to be happy about. And with so many treatment options now, even if you do have an IBD, you will likely have a mild version of Crohns for the rest of your life given the amount of maintenance meds out there.

Anyway, keep us posted!
 
my little penguin

my little penguin

Moderator
Staff member
Ds had an incidental finding of bilateral renal cysts on his ct scan after Dx with ibd
Basically they just monitor him for development of adpkd
But most folks have cysts in their kidneys and just don't know it
The older you are the more likely it is to have cysts
Simple cysts are common

He gets regular kidney function bloodwork and checks on blood pressure but that's it
Honestly outside of having an ultrasound every year or two of his kidneys nothing else is really done or needed to worry about
Good luck
 
W

WombatStew

Thanks for that. Especially for your personal experience Julia. You're right mu symptoms are incredible mild compared to most people with IBD so I do feel like a bit of a con!
Having thought about it I'm leaning towards it not being related to diagnosis of IBD as surely that information would be given by my gastro consultant not my GP.
I asked about a cancellation and they just to keep trying so that's what I'll do.
Thanks for the replies!
 
J

Julia S

No worries, Wombat! I hope you get to see your GP soon. I'm sure it's nothing serious. Keep us posted and know we're rooting for you!
 
W

WombatStew

Hi all, thought I'd just update! Saw my GP and as predicted it wasn't to do with IBD results as such they just incidentally found cysts on both kidneys whilst doing the mri which I'm off for further tests on.
The GP had a letter from my gastro that I hadn't had saying the mri didn't show any evidence of IBD symptoms so I'm being referred to a different NHS trust to have a pill endoscopy.
Assumed that was the end of it for now but just had an appointment letter through for a CT thorax abdo pelvis with contrast that I knew nothing about! Wish my GP or the gastro would have explained but I'm assuming it's again to look for symptoms.
Quick Q for anyone who's had one - it mentions the drink is this going to be the same as the mri which had laxative side effects?
 
J

Julia S

Hi Wombat!

I'm glad you came back to give us your updates.

The contrast depends on what they want to look at. If it is a small bowel CT yes, the contrast that is administered orally will be the same as the MRI's. The IV contrast used in a CT is iodine based though and is therefore different from the one used for the MRI... If having an IBD wasn't good enough, we end up with diarrhoea every time we need imaging done... :p

Please let us know when you have your pill cam. That will definitely shed some light on your IBD woes.

I just had a CT Enterography a few weeks ago to look at how my Crohns was behaving and I was called saying that, miraculously, there was absolutely no sign of IBD on my CT scan and that even the stricture they had seen earlier had disappeared. My GI told me to re-do the pill cam to make sure. I just got the new results back yesterday and guess what? I do still have a stricture..... :/ It just didn't show up at all in the CT scan. I'm a big fan of the pill.

Good luck!
 
R

redmazzy

I've just had some more tests including the small bowel MRI after ten years of suffering problems with no diagnosis. My last set of tests were in 2009, since then they stopped bothering to test me as my symptoms have got progressively better through change in diet and cutting out alcohol.

After seeing a nutritionist again in the last two years she told me to go back and get a diagnosis as she couldn't work out why I had these problems when the tests she did came back normal, things like the faecal calprotectin test.

I found the best consultant I could who specilaised in IBD, I had private healthcare coverage because my boyfriend gets that through his work. I couldn't see the consultant privately though as she wasn't taking on new patients in January so I went via the NHS to the same consultant. Both times I went to see her I saw her registra, both times they were different doctors so I had to start all over again with my ten year case history and felt completely rushed and misinterpreted.

I had a gastroscopy which was normal and faecal calprotectin test which was slightly elevated but nothing that unusual, bloods were normal. The second registra tried to tell me I probably had IBS, at which point I got very frustrated, although my problems are dormant most of the time when they do happen it's pretty extreme and I usually end up in A&E needing morphine for pain. I saw the actual consultant for two minutes because I think she knew I was getting frustrated, they agreed to do a faecal calprotectin test every 3 months to see if the markers ever went up, if they did they were going to do a colonoscopy. I also found a colonsocpy very painful and would need to have a full anaesthetic if I had it again.

After that debacle I thought I'd try and see her again privately, luckily she could take me on this time. I had 45 minutes with her personally, not a registra! She did faecal calprotectin test, bloods and ordered an small bowel MRI. Within days she rang to ask me if I was feeling ok, because the test showed inflammation at the end of the small bowel, I have Crohn's disease. I have to have a CTE next week for a more detailed look.

They really under played the effects of the fluid you have to drink, within 20 mins of the test I had painful bowel cramps and had to run to the loo, ever since when I have to pass stools I get painful cramps even if the stool is normal. So I'm a bit worried about drinking the same stuff again for the CTE. I don't normally get much diarrhea at all so it's very unusual for me.

As someone said before, if you have very mild IBD with not typical symptoms then it's nearly impossible to see the evidence on scans, when I had my tests it was within the first year of being very symptomatic, I had every test going and nothing looked abnormal even on the pill cam test. After that the attitude was unless you get worse why repeat tests. That's NHS rationing for you. I'm so glad I have private healthcare because all the tests were paid for and I could book them immediately, not having to wait for 3-6 months.

I was about to give up, I was thinking if these tests come back normal maybe I should just accept that I will never know what's wrong with me. I suspected I had some type of Crohn's all along. I generally throw up and have extreme nausea rather than getting bloody diarrhea, I couldn't relate to a lot of the Crohn's symptoms I read about, except for Gastroduodenal Crohn's disease, which was ruled out when I had the gastroscopy.

I also have Ankylosing Spondylitis, for 24 years, that took 3 years to diagnose because until you see actual changes in the spine/bone it's hard to tell, especially if the bloods are normal.
 
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