My Story - Diagnosis hokey cokey

[Marsman]

Hi all! I’ve not been diagnosed with crohns yet - or rather I have then i haven’t.... let me explain.

About 3 1/2 years ago i started suffering from what i thought was food poisoning every couple of months (severe nausea, vomiting, abdominal pain and diarrhea). After about the 3rd bout I brought it up with my DR said it was a nothing to worry about and that the abdominal pain was IBS!? After the 5th time i went back and finally got referred to hospital to have a Gastroscopy and colonoscopy.

The colonoscopy was clear however the gastroscopy came back with signs of localised villous blunting which the GI thought indicated Celiac disease (all celiac blood tests came back negative), so I went gluten free which didn’t help. After 3 months i went back to the GI and said the diet didn’t work and i was then told I had IBS.... I had yet another gastroscopy which showed that the blunting was still there, so was advised to try the Gluten free diet again, which i did to no improvement.

After another couple of months passing i had what i can only describe as a massive flare, i had chronic vomiting, nausea and diarrhea for several days and ended up in hospital for 5 days. I had loads of tests, scans etc but nothing was found, so off i was packed home with anti nausea meds and morphine in my pocket.

I returned to the GI 6 weeks later who insisted it was celiac disease and insisted that i try the diet again. At this point I changed GIs and the new GI recommended a specific stool sample (i cant remember the name, something to do with protein), hey and guess what the results came back indicating that there was severe inflammation somewhere.... At last i thought I’m not going insane, so I had a capsule endoscopy which show areas of inflammation and ulceration within my small intestine.

However because the GI wasn’t sure if it was crohns (he said it was highly likely), i underwent a further gastroscopy with a pediatric tube as he wanted to take biopsies. Alas the procedure was a failure as they couldn’t get down that far. Because of this the GI was/is reluctant to try anything.

On my insistence I was given a trial of Pred 40mg which, to be honest, only really took the edge off my symptoms. I didn’t experience the amazing effects i read about.

The massive flare started in July 09 and although its not as bad as when it started I still experience chronic nausea (cyclizine and metaclompromide only work to a point), intermittent vomiting, stomach cramps and constipation (the diarrhea seems to of stopped).

I now have a GI appointment in two weeks and would like some advice from you good people. Should i push to try other meds??? At this stage i would happily cut off my left arm if it would stop my symptoms

On a side note I am currently trying the SCD (day 78!) and have had some success with it (mainly with bowel movements, not the nausea and vomiting though).

Thanks for reading

Andre

To date i have had the following tests:

4 Gastroscopies
2 Colonoscopies
Ultrasound
X-Rays
Barium Meal
CT Scan
Loads of blood tests
Stool tests
Capsule endoscopy

Out of the above only the stool (a protein type test for inflammation) and capsule endoscopy have found inflammation.

 

[rui]

Hi andre first of all welcome, i have make a lot of tests to 2 colonoscopy an endoscopy lots of blod tests feces urine an abdominal ecography and in the blod tests only 1 time my C Reactive protain come hi that normal now is 0.15mg/dl < 0.50 and like you only a doc sujested crohn. My simptomes are a litle like you, nausea pain on my belly and strange noises and a burn in my eyes. That dont go away. And i feel like you i am going crasy? So be calm you are not alone.
The best for you

 

[maxibear]

wishing you good luck and good health,hang in there and keep the faith

 

[Dexky]

Hi Andre, Welcome!!! I'm certainly no expert but I think forty mg pred is a fairly low dose. Some of these guys would definitely know better than me though. Maybe that's why it didn't respond to the pred. I wish you the best of luck whatever you and the GI decide.

 

[DustyKat]

Hi Andre and :welcome:

It's good to see you here. Unfortunately normal test results, doctors hesitant to make a diagnosis and being given the run around are all quite normal here so you are not alone! As Dex has said there are many on here that will be able to tell you of their experiences with Prednisone and the dosages they were taking, I have no doubt they will be along soon.

The massive flare started in July 09 and although its not as bad as when it started I still experience chronic nausea (cyclizine and metaclompromide only work to a point), intermittent vomiting, stomach cramps and constipation (the diarrhea seems to of stopped).

Just tossing an idea around here but from the symptoms you describe above perhaps over time you have developed a stricture due to your chronic inflammation and that may account for your current symptoms particularly since you have gone from diarrhoea to constipation. Definitely discuss and emphasise these symptoms to your GI.

I hope all goes well with GI's visit and please keep us posted on how you are doing.

Welcome aboard!

Take care,
Dusty

 

[ameslouise]

Hi Andre and welcome!

You will see as you poke around the forum that sometimes it takes a while to get an official diagnosis. Persistence is key. There are lots of other meds out there to try, and certainly you can go up to 60 mg pred if necessary to control things in the meantime.

Some folks have had really good results from ginger capsule for the nausea so you might want to give that a try. If there is consistent vomiting, I agree with Dusty that you might want to discuss stricture with your doc.

Hang in there and good luck! -Amy

 

[Marsman]

Thanks for the advice folks I'll definately discuss the possibility of a stricture with my Dr.

 

[Astra]

Hi Andre
and welcome

40mg of Pred is usually the standard dose, but you can up it to 50 or 60mg, then start to taper down after a month.
There are other meds, biologics like Remicade and Humira
and immunosuppressors like Azathioprine and Mercaptupurine
I have strictures in my terminal ileum, and the first indication that one of them was narrowing or becoming blocked, was vomiting and nausea.
I would go back to GI, and persist and insist!
good luck
lotsa luv
Joan xxx

 

[Regular Joe]

Hi Andre,

Welcome.

I agree with Joan and the others that it sounds like something is either partially obstructed or there is a stricture or thickening going on in your small gut. If it were me, I wouldn't be as focused on medication as I would be on a clear diagnosis. If you have an obstruction or stricture, and it becomes a total fold or blockage, it will require emergency surgery, and it could also be fatal.

I understand that nausea, pain, and vomiting are not pleasant things to deal with. I've had a partial obstruction before, and I was put on a liquid diet for 2-3 weeks. Nothing solid at all. If I couldn't tolerate the liquid diet, or if when I started to slowly intruduce food I would again start vomiting, surgery would be required.

On the other hand, your symptoms also seem consistent with inflammation in your small bowel, which could be Crohn's disease. Your blood test which sounds like CRP ("C-Reative Protein") indicates inflammation. That is also consistent with Crohn's and/or IBD.

It sounds like it would serve you well to get copies of your medical reports and determine the specific tests you were given, and what the indications were of the test results. From there we can help you help yourself when dealing with your physicians. You may have further testing that could help clarify things.

The better you educate yourself about the possible conditions you are facing, the clearer your treatment options. I understand why physicians are reluctant to start throwing around heavyweight steroids and immunomodulators. The drugs we take are not a walk in the park - they are heavy-duty, potent, and very toxic. Many of us develop terrible reactions and side effects.

Like it's been said, it will take persistance and patience. The more experienced, excellent IBD physicians are few and far between and often require a long search.

Hang in there.

Joe

 

[Marsman]

Thanks Astra and Joe for taking the time to reply. Food for thought indeed.

And a quick update - I luckily managed to have a chat with my GI this morning on the phone and he's keen to get accurate biopsies before trying further meds so i'm being referred for a double balloon enteroscopy.

 

[Astra]

That's good news Andre!
good luck!
let us know how you get on
xxx

 

[Mayflower537]

And a quick update - I luckily managed to have a chat with my GI this morning on the phone and he's keen to get accurate biopsies before trying further meds so i'm being referred for a double balloon enteroscopy.

Someone on another forum asked me if I had the 18 ft endoscopy done. Is this what they were probably referring to? Cuz I did not have this.

 

[finnigan]

it took my gp ten years to diagnose me by the time they did i was sufferin perotinits my bowel had ruptured im left with only 120 cm of small bowel keep on at the docs there not always right hope u get sorted

 

[Hedgehog]

Hi Andre,
Yes, push for other meds. My diagnosis was based on a capsule endoscopy and like you, they haven't been able to get a biopsy to confirm it 100%. Nonetheless, my GI is treating me with immunosuppressants. He and I have discussed the possibility that I may not have Crohn's and may be taking meds unnecessarily. I'm happy to do this because I need treatment, and because the GI is pretty sure it's Crohn's, he is too! You perhaps need to emphasise to him that you're happy to consent to the risk. Personally, I'd rather treat the disease now and avoid more damage.
By the way, I've also had constipation with this. I think this is more common with small bowel Crohn's.
Best of luck,
Gail

 

[nycguy101]

Marsman,


Keep us updated on the DBE. As far as I can tell, you're the only other person on here who has exactly the same symptoms and course of diagnosis as I do. (Negative serology, though I never had the fecal calprotectin test because I got the positive pillcam first, negative ANCA test, negative upper endoscopy, colonoscopy, barium swallow, and CTE) Ulcers shown only in jejunum on the pillcam. I also only have chronic constipation. On the other hand, my doctors are NOT very keen on calling it Crohns yet because my ulcers are very atypical for Crohns (They're definitely NOT the little white apthous ulcers that most people show; more like circular erosion surrounded by a villous scar where its healed). I'm a bit confused as to why people are assuming obstruction (which is due to hardened scar tissue building up over years, NOT temporary inflammation) which would have pretty conclusively showed up as thickening on the CTE. I dont think that's something to be particularly worried about at this point, especially considering the pillcam passed through fine (although mine took all 8 hours, which is about twice as slow as normal).

Also, I used to have horrible nausea if I ate anything greasy, spicy, or containing milk. Since I've taken care of the constipation with miralax, I can pretty much eat anything without the nausea as long as it doesnt have cheese.

On a side note, have you been tested for TB, HIV, and all the possible parasites (cryptosporidia, giardisis, hookworm, P&O)?

 

[gypsigirl28]

hi Andre and welcome to the forum

 

[DustyKat]

I'm a bit confused as to why people are assuming obstruction (which is due to hardened scar tissue building up over years, NOT temporary inflammation)

The reason I personally suggested this is due to the ongoing symptoms. Andre's symptoms started with a massive flare 12 months ago and although the symptoms have reduced they have not abated completely. In some people it does not take years for scar tissue or obstruction to occur and so I feel that stricture may be a possibility as there is small bowel involvement. My own daughter went from occasional symptoms for 12 months to what is obvious to us now as a massive flare that lead to a perforated and infarcted bowel. Probably the most disturbing aspect of all this, and I note here that she did not have the more invasive tests, all the tests she did have came back as grossly normal up to and including 1 week before the emergency surgery. I don't think with IBD you can discard any possibility.

Dusty.

 

[nycguy101]

The reason I personally suggested this is due to the ongoing symptoms. Andre's symptoms started with a massive flare 12 months ago and although the symptoms have reduced they have not abated completely. In some people it does not take years for scar tissue or obstruction to occur and so I feel that stricture may be a possibility as there is small bowel involvement. My own daughter went from occasional symptoms for 12 months to what is obvious to us now as a massive flare that lead to a perforated and infarcted bowel. Probably the most disturbing aspect of all this, and I note here that she did not have the more invasive tests, all the tests she did have came back as grossly normal up to and including 1 week before the emergency surgery. I don't think with IBD you can discard any possibility.

Dusty.

That's kind of scary; did she have a normal barium x-ray and CT enteroscopy?

 

[DustyKat]

She never had a CT enteroscopy but she did have a full contrast, IV and Barium, CT scan 1 week prior to her surgery that came back normal as did all her inflammatory markers and white cell count! The doctors never could work out the CT scan result when they opened her up and found what they did, pretty freaky ay.

Dusty.

 

[nycguy101]

She never had a CT enteroscopy but she did have a full contrast, IV and Barium, CT scan 1 week prior to her surgery that came back normal as did all her inflammatory markers and white cell count! The doctors never could work out the CT scan result when they opened her up and found what they did, pretty freaky ay.

Dusty.

Sorry, meant enterography. Scary stuff.

 

[Marsman]

Scary indeed!

@nycguy yes i've been tested for TB, HIV, and all the possible parasites. I'm also the same with greasy/spicy food and am lactose intolerant.

I'm still awaiting a date for the DBE and have been told it should be within a month or so. Got a GI app on the 31st August for a review.

Have you lost any weight? I have gone from 200lbs to 160lbs

 

[nycguy101]

Scary indeed!

@nycguy yes i've been tested for TB, HIV, and all the possible parasites. I'm also the same with greasy/spicy food and am lactose intolerant.

I'm still awaiting a date for the DBE and have been told it should be within a month or so. Got a GI app on the 31st August for a review.

Have you lost any weight? I have gone from 200lbs to 160lbs

Actually, weight hasn't been much of an issue with this for me, because it only took about 6 months for me to figure out how to get the constipation under control. I've dropped from 160-165 to hovering between 153-159. The lesions in my jejunum were skipped with healthy mucosa in between, so I dont think malabsorption is a major issue for me yet.

See if you can get the pics from your capsule endoscopy and compare them to the ones in my welcome thread to see if we have similar atypical lesions. If they're macroscopically similar (and therefore, both atypicial to crohns), it would seem that we have the same problem, whatever it is. I have my DBE next week.

 

[mia]

Hi Andre. I'm new here. I'm very interested in your SCD diet experiences. In an attempt to get my flare under control, I'm just beginning this diet myself.
Mia

 

[Marsman]

@nycguy - I'll get hold of a copy and have a look. Let me know how you DBE goes too.

@mia - Once you get past the intro phase things are not too bad. Its easy to get focussed on what you cant eat, so instead I just look at what I can. Some, maybe obvious, tips would be try and buy in bulk and when cooking, if you have the storage, cook in bulk too. This will help with saving you loads of time as at first all i seemed to be doing was cooking/preparing food!! if you have not already found it I found the following site really useful: breakingtheviciouscycle.info/index.htm

Andre

 

[mia]

Hi Andre. I've ordered the book online from Abebooks (2nd hand copy at great price- usually better than Amazon for that I find). The book isn't here yet, but I'm through the chicken broth intro stage now, and have been cooking and freezing like crazy. My husband even bought me a mill for making my own flours. I'm seeing SOME small good improvements already- I hope these small improvements keep on. I do plan to do it right and not screw up. I can do that for a full year- but then next summer we will be in Istanbul for three weeks- and I have no idea how I will possibly manage then. SO the idea is to do fanatical adherance up until then.
How is it going for you on the diet so far? Any improvements in how you feel yet?
Mia

 

[nycguy101]

Hey, so here's the update:

They found nothing at all. No lesions, no inflammation, my small intestine is perfectly healthy... I have no idea what to think at this point. Apparently, the lesions healed themselves. So weird. FYI, the soreness after the DBE is excruciating!

 

[mia]

Wow. How do you feel about that? Jeeze.

 

[Marsman]

@ nycguy - ouch!! Did they take biopsies?? Could there be something at a microscopic level (i think i remember someone on here with microscopic Crohns or colitis).

@ mia - my bowel movements are a bit better and the bloating is reduced....

 

[nycguy101]

@ nycguy - ouch!! Did they take biopsies?? Could there be something at a microscopic level (i think i remember someone on here with microscopic Crohns or colitis).

@ mia - my bowel movements are a bit better and the bloating is reduced....

No, no biopsies because there was nothing abnormal. They couldnt even tell which part was damaged before.

I finally found a use for Pentasa though! The stuff works wonders on the post-DBE soreness.

The docs actually recommended that I keep taking the Pentasa on the theory that its the reason the lesions cleared up in the first place. I dont know though; considering I've been off it for a month and only took it for about 2 weeks with no noticeable change.