Can crohns be diagnosed with a Ct scan?

Digestive health
1

Hi everyone,

- I have had 'ibs' for years (I use quotes coz never had any tests just fobbed off) but started having diarrhoea about two years ago. Randomly had d. Every day for a month for no reason when I'd never had it before. Dr's checked for infection and it was negative so told me to ride it out. Since then I've had random bouts of diarrhoea that can be one episode for one day or many episodes lasting weeks. I have had one more month long episode, and things have become more frequent over the last 2 years.

I am currently in the worst flare ever- it's lasted 4months. I have been in the gp twice and out of hours gp twice in agony. All think it's crohns. Faecal inflammation test was 235. Had a colonoscopy last week and have had cronic diarrhoea since with no sign of it stopping. They couldn't complete my colonoscopy as my bowel was too loopy- they couldn't get past the splenic flexure. They said they're gonna do a ct next but I thought you could only diagnose crohns from colonoscopy?

2

Hi,

It sounds like you are going through a tough time with your symptoms and trying to get a diagnosis - I understand how frustrating and draining it is as it also took a while for me to get a diagnosis.

I'm not sure if it might help as I didn't have a CT scan but I was finally diagnosed by pill cam ( capsule endoscopy) 5 months ago. I have Crohns of the small intestine with extensive ulceration, cobblestone mucosa (indicates that I've had it for a long time) and mild stricturing.

Although I initially went to my GP around 7-8 yrs ago with intermittent abdominal pain and loose stools nothing was ever flagged up as being abnormal. just over a year ago my symptoms became much worse and much more frequent. My bloods were normal ( except for v low iron). My calprotectin result was similar to yours. I was referred to a GI consultant. Had a colonoscopy which was clear. Then waited and had an MRI which was clear. Also had an ultrasound to check my liver which just showed that it's incredibly cystic for my age. More bloods - which were clear. This went on for months during which time my symptoms were getting much worse and very difficult to cope with. I was finally able to have the pill cam which found the extensive disease.

Sorry to waffle on. I am not sure about the CT scan but I suspect that similarly to the MRI scan it can only detect thickening. I know that I have since been told that the MRI scan does not give much detail and cannot identify the surface damage in the intestines.

I believe the pill cam was not offered to me initially due to the expense. ( it costs around £1000 to have it done privately at Salford Royal hospital) ( mine was done on the NHS).

Have you been told whether they suspect your large intestine or your small intestine is involved? If it's the small intestine then it's definitely worth asking if you can get the pillcam done.

If you get a clear result with the CT scan do push for further tests if you are still not feeling well. After receiving lots of clear test results I had started to think that I must be imagining things were worse than they were or that I must have been a bit pathetic, in tears with the pain, when the test results were showing no abnormalities.

Good luck with everything. I hope that you get a diagnosis soon so that you can get treatment and start to feel better. x

3

I was diagnosed via ct as they couldn't complete colonoscopy.

i wish you well.

4

there are several ways to diagnose crohns leeniepie, i'm currently having small bowel investigations due to ongoing symptoms just like colitis (i have it) but without any bleeding. my calprotectin is 280. my recent colonoscpy was normal. i then had a contrast mri on small bowel - normal. i'm currently waiting for results of a pillcam endoscopy on small bowel.  so to diagnose crohns, they usually start with contrast mri to check for narrowing or strictures etc. if no narrowing,strictures,obstruction, they can then do pillcam endoscopy (camera pill in small bowel) which takes thousands of images as it passes through your small bowel. i know of a lady on here that didn't have her crohns diagnosed until she had the pillcam.  x

5

Thank you for your response. The way I feel right now I'd be happy to pay for every test under the sun. I'm fed up of people telling me that everything is normal, or since I haven't lost weight I can't be that ill (I only haven't lost weight because I force feed myself even when I feel terrible because I don't want to pass out).

I've read about the pill endoscopy and I'm going to push for it after the ct as it's the only way to see the small intestines.

6

Dear Sarah,your experience, symptoms, everything even all the tests are 100% the same as me. i am currently awaiting my pillcam results & expecting my consultant to ring me anytime - he is another one who is not expecting anything to be found...... but my symptoms are EXACTLY like yours & chronic-I've been unable to go to work, shopping,meals out etc & had to cancel 2 holidays since this all flared up again in may. i am praying something to warrant my symptoms is found on the pillcam results so i can be properly treated with accurate meds. i missed a call from my consultant on friday - i was at home all day, & only time away from my phone was when i took a shower in the afternoon - when he rung me of course; talk about sods law!!! I've phoned his sec today, & awaiting a call from him hopefully......

Your post gives me hope that i may finally get to know what is now wrong with me -its the first time they've done small bowel investigations. i was diagnosed with colitis in 2012 which is controlled with meds(normal colonoscopy recently) bile acid malabsorption diagnosed 2015 along with fructose malabsorption, & had ibs-d all along with colitis, which has been fixed with good qual probiotic & diet adjustment, so something else has to be wrong now.

Often my consultant has made me feel like its in my head or just ibs, but i know it's not.  xx

7

Hi Leeniepie. I've lost just a little bit of weight over the course of 16mths, but only about 10pounds, & it is steady now, but since I've had to stop eating fruit & most veg because of my already diagnosed conditions & inabilty to break down most veg, i have been eating more calories in the foods i can tolerate & that do not bring ibs attacks. so that could of counteracted more weight loss.  in the evening when i have my only solid meal of the day, instead of lovely veg i often have a piece of white bread & butter to replace it, or i really dont have much on my plate & still feel hungry after (dont want to snack later.) well bread & butter has more calories than veg. thats just an example.  and i agree with you about doctors & consultants thinking you can't be seriously ill just becasue you haven't had massive weight loss. we may not have terminal illnesses, but we still have very much life restricting illness that needs proper diagnosis & accurate treatment so we can carry on working & leading a normal social life. the consultants are supposed to be there to help us, but sometimes it feels like a battle doesn't it.

How are you feeling today, did you phone your consultant or go to the doctors following feeling very unwell after your mri?  x

8

I completely understand how you feel leeniepie.

In the weeks before my diagnosis the pain in my abdomen and back had become pretty much constant. Added to the multiple bathroom trips, joint pain, extreme fatigue, fuzzy head with ringing in my ears, mouth ulcers, pain under my ribs and also gastritis symptoms, I really struggled to cope and was in tears most days. I found myself having to go back to bed during the day at times.

.... things are much better now though .... Do hang in there and don't give up xxxx

I'm not sure if it helps but prior to my diagnosis I wasn't able to get any medication.

I purchased a tens machine from the pharmacy ( approx £15) which really helped with my abdominal and back pain.

I also found that the easiest thing for me to eat ( I was also having to force myself to eat as I had lost my appetite - I either felt full or nauseous) was the chicken soup / broth.

xxxx

9

Hi looloo43,

I hope that you've managed to speak to your consultant and get your results. xxxx

I too had hoped that something would show up on my results - it was a relief when it did which I know may sound odd to some! My feeling was that once I knew what was wrong I could start to deal with it.

Like you I have had much success by modifying my diet and taking probiotic daily.

Good luck with everything xxxx

10

Just to add, I follow the SCD way of eating now xxx

11

My posts have been moderated to remove details about the way I eat now. I've found that modifying my diet has helped me a lot. Obviously we are all different and the same may not work for others but I thought it may be worth mentioning as my GI consultant has said that it would do no harm to try.

The broth that I eat and find easy to digest is SCD xxxx

Hope that this helps xxxx

12

Hi Sarah. thankyou for your reply. I know  exactly what you mean hoping something show up on results for the same reason as you-it doesnt sound odd to me,but like you say,may to some!  

I am on a low residue diet which really helped the ibs-d element of my bowel problems. everything whit - bread,rice,pasta. no grains, fibre, seeds or cereals. my specialist gastro dietician said often people with bowel conditions cannot break down fibre & actually exacerbates diarrea & bloating. that along with a quality liquid daily probiotic sorted out the ibs-d. i only get that when i eat too big a meal(eg xmas) eat too quickly or have more than about 8 small chunks of choc in one go! so i know this isnt ibs (which i hope my consultant doesnt try to fob me off with) ibs pain is different -spasmy, twisty pain that comes in waves, not constant pain like I'm in now & worse with more bm's.

could you pm me & say briefly what the scd diet is hun?

many thanks Sarah.

xxxx

13

i ended up in a&e yesterday as i phoned 111 they sent  out medics who wanted to check my bowel wasnt perferated. one xray and some blood tests later and i was sent home. still very nauseous

14

could you tell me what probiotic you use? i tried one before and it did nothing, but it was just from holland and barret so maybe not of high enough quality? PM me if you cant post it on here,

i may make chicken broth. ive done some reading on SCD and not sure i could be so restrictive for so long! (i thought fodmap was bad enough lol) i am also dubious about the yoghurt as youre always told to avoid dairy when you have d??

15

did they reckon it was just after effects of the mri scan then leeniepie? sorry your still feeling so awful.  I've also pm'd you with the probiotic i use. xx

16

Thank you. Yeah they seem to think it's just the colonoscopy /prep effects. No ones really bothered about it now they've ruled out bowel perferaton.

17

For the past 6/7 years I have been told I have ‘IBS’ I have been to my GP’s several times over the years with excruciating symptoms. I can’t cope any more.

The abdominal pain and swelling is so severe, I can go from a size 10 to looking like I am about to give birth in the matter of seconds and it can last up to a 10/14 days at a time. They don’t go hand in hand, I can have both at the same time or pain without the swelling and vice versa.

I have diarrhoea/loose stools every day, they have blood and mucus in it more often than not. Sometimes it’s just purely mucus (Sorry for being so graphic).   

There are days I can’t get out of bed, my body feels so heavy, this exhaustion just washes over me and I feel so unwell and weak. When I do force myself to go to work or get up I feel sick and dizzy and get so disorientated it’s like I can’t think straight. It gets so bad in work sometimes I have to go to the toilet and lie down on the floor in the cubical. Other times I go in and cry with the pain, I feel like I’m in labour.

It’s really starting to ruin my life. I have had a few ‘accidents’ over the last couple of months, now I get serious anxiety about going ANYWHERE and always carry an emergency pair of trousers and pants everywhere I go.

The doctors have told me its IBS; I have been sent to dieticians and been on every diet under the sun, Low Fodmap, Gluten free, Low Fibre, High Fibre, No lactose. I don’t smoke, drink fizzy drinks or caffeine. You name it I’ve tried it!

I had an Endoscope and colonoscopy a few years ago (Maybe 5 or 6), as far as I’m aware the Endoscope was clear and they couldn’t complete the colonoscopy (I don’t remember the reason). The symptoms have always been there but now I feel like each episode is getting worse than the last.

I have been given Buscopan, Peppermint Oil, Omeprazole, Mebeverine, none of which help the pain or swelling or relieve the symptoms. I was once referred to a gastro at the hospital and when I went to my appointment it honestly lasted no longer than 3 minutes and she sent me away with a prescription for medicine to help loosen my stools? (I never collected it, it’s the last think I need) I came out and burst into tears. I feel like I am trapped inside my own body and no one is willing to help or listen.

I have been to hospital 3 times with these symptoms, twice I was sent home with Buscopan (No tests, just an initial examination) the last time which was January of this year my GP sent me straight to hospital after taking my blood pressure and feeling my stomach, he said he couldn’t rule out a suspected appendicitis. When I got there they took blood tests and admitted me. It wasn’t an appendicitis but I was told my bloods were ‘UP’ and that I had to stay in.

There were no beds in the gastro ward and so they found me a bed in a surgical ward. Each morning when the doctors were doing their rounds I was told to fast as I was scheduled for a colonoscopy/ Endoscopy and that gastro would come down and get me. They never did, every day I was told the same thing and at around 6 o’clock each night I was told that actually gastro were really busy and that I would get my tests the next day (I never did).

Since I was admitted I was told to hand my stools each time I went to the toilet so they could send them away for testing. There was of course blood and mucus in it (which is completely normal for me).

There was one surgeon that kept checking in on me while I was in, he told me that my history and symptoms along with my blood and stool samples made him think I had Crohn’s Disease but that I was a gastro case - he would constantly tell the nurse to call up stairs and let them now I was still here waiting. This is going to sound strange but I honestly felt so happy, like for the first time I finally had an answer for everything that was wrong….However L

After spending 5 days on the surgical ward a gastro doctor came and seen me for the first time and I told me that I actually had food poisoning and that I was being discharged. How is that possible??? It was the same symptoms that I get over and over, surly I can’t be getting food poisoning constantly…Can I????!! I burst into tears when she said this and actually asked her if It was possible to keep getting food poisoning. Her reply was that yes it is possible to keep getting campylobacter if you have HIV? I was so stunned, so she took blood and told me she would send for a HIV test and off I went. (I don’t have HIV fyi).

My discharge letter said I was admitted with a CRP count of 98 and abdominal pain and swelling and that if symptoms reoccur within 2 months I was to go back to my doctor. I did this and she referred me back to the gastro at the hospital again, and took more bloods. I was called a few days later to let me know my blood tests showed that I have a vitamin D deficiency but still don’t have the gastro appointment yet?

Its ruining my relationship, my career, and by everyday life. I have no idea what I can do. The first time I ever heard of Crohn’s was when the surgeon mentioned it at the hospital and since then I have read up on it. To be honest I am convinced I have it. I can relate to other sufferers symptoms and flare ups. BUT on the other hand I’m not a doctor! Is it just IBS, is it food poisoning? It’s came to the point that hate going to my doctor I feel like a nuisance. I can’t believe no one has suggested Crohn’s before. Or is there a test to completely rule it out, as this could have been done via the blood tests, maybe, which is why they haven’t mentioned it?? I honestly don’t know.

I am sick again and have been off work for 4 days because of all the symptoms I have described. I guess I am writing this for some advice and to half vent. Sorry for the long post but I really am at my witts end. L