4th test and still no diagnosis...

[bushydougie]

I had my small bowel meal last Thursday. The radiologist said there was no signs of CD in my small bowel. But he also said that because I was on Pred they wouldn't expect to find anything as the pred would get rid of any inflammation.

So no I'm wondering why on earth I had the test done now. Any ideas?
Just seems like I went through the joy of laxatives and barium for nothing.
On the plus side I now know that I don't have a problem with drinking Barium. I managed to almost down the 2 1/2 glasses of it :ylol:

So I've now had a colonoscopy, ct scan, endoscopy and the small bowel meal and nothing has been found. I know that so many of you have had numerous tests before you got a diagnosis and that many of you are still trying to get a diagnosis. What would be your suggestions as to what I should ask for next? Or is there little point in having any more test whilst I'm on pred and with few symptoms at the moment?
I have 2 1/2 more weeks on pred. I'm now on 10mg and go down to 5mg on Saturday. I was supposed to be seeing my GI on the 22nd but the appointments been postponed for 3 weeks :thumbdown: The GI wanted to see me as I was coming off the pred.

And I'm back at work tomorrow for the morning. It will be the first time I've actually taught in 8 months!!! Should be pretty good

Cheers

Sam

 

[porter89xxx]

Hi bushydougie,

I am in the same position as you last year they did a barium meal and they actually found ulcers and inflammation in my small bowel and started me on pred and pentasa then they decided to do the other tests whilst i was on pred and after. The tests all come back normal from then on and so i have also been put on i think its just ibs, even though the steriods did help me to some extent. It is so frustrating i no how you feel you just want an end and diagnoses even if it is crohns because you just want to feel well again, my suggestion would be to confront your doctor and say why did you do the test if you knew it would take away inflammation, are you feeling any better on steriods?

 

[Crohn's 35]

In my experiences I have always known Pred masks everything so do pain killers. I am on lose dose pred but I weaned and stopped taking it the day of, so he did see ulcers, and steriods mask and then when you taper the problem is still there. Usually Antibiotics can get rid of them but, long term Flagyl can cause ulcers too, and guess what I was almost living on... plus I got confirmed spastic colon and nothing helps that.

 

[Cat-a-Tonic]

Hi Sam, sorry to hear you're still undiagnosed. My GI refused to put me back on pred until after my pill cam for that very reason - if there's damage or inflammation, he wants to be able to see it without the pred healing or masking it. 10 more days until my pill cam, so not much longer now. Have you asked your GI about the possibility of that? I've heard from a few people on here that got diagnosed via pill cam when the scopes and scans missed seeing anything. I'm not sure what the usual next test is, but I asked my GI about pill cam and he was enthusiastic about me having it done, so that's what's next for me.

 

[porter89xxx]

I had a pill cam also when i was on pred and it showed nothing up, its such a pain you would think doctors would want to see it at its worse not put you on something and then run tests afterwards to actually have nothing to see anymore even though the evidence is slap bang in their faces. I hate drs sometimes

 

[Mayflower537]

Sorry nothing showed up, Sam. It is frustrating, to say the least. Hopefully your doc will have some ideas when you go to see him in a few weeks. I hope he doesn't give up yet. Esp. after putting you on something that masks inflammation and other symptoms. Geez. Whatever happened with the pathology report after your upper endoscopy? I thought they saw some spots in your stomach or something.

 

[bushydougie]

Thanks for all your comments, support and advice.

Porter - So after you were on Pred all your tests came back normal even though before they found evidence of CD? The pred has made me feel human again. I have almost returned to normality! When I first started to taper some symptoms came back but this time I seem to do be doing ok. I shall certainly be asking the GI about the issues of tests when on pred! You are so right about the diagnosis. I now just want to know and be able to properly deal with whatever is wrong with me.

Pen - How long were you off pred before your tests?

Cat - I knew you'd understand as you're in a similar position to me. When I read an earlier post from you about your GI keeping you off pred before your test I did wonder about mine. It's so frustrating. I was going to ask him about the pill cam last time alongside the small bowel meal but as he wanted to do the sbm i just went with it. He's talked about an MRI scan and another colonoscopy that would go higher up. Ouch! I shall def ask about the pill cam but I'm not sure how easy it is to get it on the NHS or if theres much point if I'm still on pred or if I'm off it and am doing ok cos I guess the inflammation will not be there now.

Mayflower - You have a good memory My GI did not think the red spots (gastritis) meant anything important or was anything to worry about... From how he was talking last time I don't think he's going to give up on me as he was discussing what tests to do after this one if the results weren't clear.

I did my first morning of teaching today in 8 months. It was great but I had to come home and sleep afterwards!!

 

[porter89xxx]

Yes i was admitted into hospital after months of pain and discomfort even having my appendics removed nothing helped, i was admitted in hospital with constipation/blockage but they did the barium meal and said they saw inflammation and some ulcers, so they said i had crohns, put me on 40mg pred and pentasa, then when i left they wanted to do test to confirm it, which have all come back normal even now even though my terminal ileum showed inflammation and they wrote on my report mild iletius, the biopsy come back normal which is not suprising considering had been on high dosage for 2-3 weeks by then, and had no luck since then its been oh no you dont have it even though evidence beforehand suggests otherwise i just dont see any other condition that can cause it.

 

[bushydougie]

So how does your GI explain the first test and results? That must be so frustrating for you to have a diagnosis then be told no it's not!! What do they think is wrong with you then? Are you still on medication now?
The diagnosis procedures sure do suck

 

[Cat-a-Tonic]

Sam, I wonder if your doctor would consider doing the small bowel meal again after you've been off of pred for awhile, to get a "true" result from it? I would definitely ask him/her about why they had you undergo such a test when you were already on pred. I haven't had the small bowel meal yet so I don't know how awful it is, so maybe it's something you don't want to re-do. Although a second, deeper colonoscopy sounds awful too! I've been on pred twice but it didn't coincide with any of my tests, which is possibly all the more frustrating because they still didn't find anything! Oh well, I'm trying to be optimistic about my upcoming pill cam now.

If you ask about the pill cam, be warned - you may have to do a colonoscopy prep prior to it. They're making me do 1/2 of a colonoscopy prep. From what I've been reading, the prep varies from person to person for the pill cam. Some have said they just had to a clear liquid diet or fast for a few hours beforehand, and others have said they had to do a full colonoscopy prep. So I guess I'm in the middle with 1/2 prep. Yuck. I get to start prep in exactly one week, and I know I'm going to be stressing about it until then. I got so ill from the prep when I had my colonoscopy, and I'm dreading doing the prep again, even if it is just half of what I had to drink last time.

I got a bit off track there, but anyway, good luck with whatever you do next - my GI was talking about possibly doing an MRI, so that may be in my future too if the pill cam doesn't find anything. I hope we both get diagnosed before we exhaust every test there is!

 

[porter89xxx]

They are still unsure but are blantly putting it down to ibs at the moment although my symtoms have now worsened, ie bleeding from the back passage now and in and out of hospital with dehydration i have lost 17kg since last year in weight and am now underweight can not put weight on what so ever, in pain all the time. I am on no medication other than colofac and nutrional drinks hence the reason why i think i keep ended up in hospital, my symptoms are not being managed at all. I am so frustrated as i have had to leave my job because of this, keep fainting and needing the loo all the time just generally weak and tired, high temp, i guess its a lot harder also being told they found it and then suddenly decided it wasnt after tests whilst on steriods makes it more frustrating.

 

[bushydougie]

Cat - I am wondering what to ask about next. I'm not sure how long after being on steroids any signs of anything will return. I'm kind of hoping that they won't for a while though as I want to stay well however, of course, then they probably won't be able to diagnose me.
The small bowel meal procedure was fine I thought. I had to have low res food the day before and take prep which I'm guessing is similar to what you'll do. It was only one sachet of fleet. It didn't start acting until over 6 hours later so I was worried it wouldn't work at all. Though as soon as I went to bed it stared
I do hope that it goes ok for you and that the prep doesn't make you ill again. That's all you need. I truely hope as well that they find some answers for you at long last.
Poter - what an awful situation you are in. I am so sorry that you are still suffering and that you still don have the diagnosis you need. Does your GI not see a link with the pred and having negative test results? Did the pred relieve your symptoms much? My GI still believes it's crohns as I responded to pred so well even though they've not found anything so far. I haven't been able to work for 8 months but am very lucky to still have my job to go back to. I have also been allowed to go down to 4 days a week as I'm not sure how I'll cope with it all.
I hope that you are able to keep pushing your doctors abou your diagnosis and relevant medication. It is not right that you are suffering so much and have had to leave your job.

 

[Cat-a-Tonic]

Sam, I would ask your doctor about how long the pred willl keep things healed/masked. I know when I had to have the ACTH test (to see if I had Addison's disease), they said I had to be off of pred for at least 5 days prior to the test. So apparently after 5 days the drug is gone from the bloodstream, as that was a blood test, but I don't know how long it keeps the intestines healed for. It probably depends on the dose and how long you were on it.

I'm not familiar with Fleet. I'm doing the Gatorade & Miralax prep next week. If you aren't familiar with that one, it's something that can be done over-the-counter. Miralax is a laxative, and you mix one container of that that with some Gatorade or other sports drink. It's easier to get down than other preps, as it just tastes like Gatorade. I did this prep once before, back in April, and I remember it working pretty quickly, so I'm not worried about that. I wonder why your prep took 6 hours to kick in? Poor you, trying to get to sleep and then suddenly your prep kicking in. That doesn't sound fun.

 

[bushydougie]

I shall def be asking the GI such questions and also why I had the darn test whilst on pred. I suppose if I had any narrowing etc they wouldve been able to see that but it's just frustrating going through a test that maybe I shouldn't have done at this time.
I'd not done fleet before but after waiting 6 hours I called NHS direct which is a helpline to ask their advice. They said to go to bed and see what happened. Well, you know what happened I asked about it at the hospital and they said what I experienced was normal as it doesn't entirely clear you out but makes sure your small bowlel is empty. I was still having d part way through the wait for my x rays. And then came the White poo. Oh the joys

 

[smiley4]

wow, this just happened to me to. been on pred for about a month and just had a colonoscopy done and it came out fine. he did take a biopsy, i will know something tuesday. he did say i was heatheir than i thought. but like you all say, what about the first one when it looked awful and was dg with cd and in while in the hospital for 6 days.