Sooo frustrated, need to vent

Hi Nikki and welcome to HW. Well, this is the right place for you. We are all here to listen to each other.I can relate. I did have almost the same story for 9 years. Me too used to have clean scopes, CT scans and MRIs. My biopsies showed only mild active disease and all I was sent back home was suspicions of Crohn's. Now, I have a fistula and was put on one of the big guns: Remicade.

Hopefully, your GI could help you w the pain. In my journey to find a definite diagnosis, my GI took the responsibility of treating me as if I had Crohn's and put me on all possible meds, as shown in my signature, except for the biologics. All other doctors whom I consulted for second opinion would give me an IBS diagnosis and say that my GI was mistaken.
Please keep us updated of what you'll do w your GI. Hope you feel better soon :)

What medications do you take? Do you ever take NSAIDS (such as aspirin or ibuprofen)?

Do you have any family members with IBD?

Have your docs considered ordering an MR Enterography (MRI of small bowel with oral and IV contrast)?

Have your docs considered running the Prometheus Labs blood test for IBD? It's not 100%, but it would be one more piece of evidence one way or the other.

Have you had stool tests to rule out infectious agents?

Hi Nikki, I am in a fairly similar boat to you aswell. I have had a colonoscopy (Clear), MRI scan (Clear), and they want to do a c.t but as I am only 19 years old I dont want to expose myself to too much radiation as ive had a c.t scan about 5 years ago. The only thing that has come back that shows something is actually wrong is a raised faecal calprotectin. Im just completly over the general unwell feeling and the fatigue. I need answers so badly!

NiceCupOfTea said...
Have your docs considered ordering an MR Enterography (MRI of small bowel with oral and IV contrast)?

What would this show that a pillcam wouldn't?

Also, aren't stool tests to rule out pathogens pretty much the first thing any GI investigation starts with? Blood/stool tests were my first step to diagnosis. I know doctors miss out stuff, but blood and stool tests are so basic, I find it hard to believe that any doctor who took your symptoms seriously enough to investigate them would miss them out.

The pillcam only shows pictures of the inner lining of the small bowel. An MRE shows the entire thickness of the small bowel, plus it provides good images of surrounding tissue and organs.

1. MRE can show wall thickening or wall edema that pillcam can't show.
2. MRE can show fat creeping that pillcam can't show.
3. MRE can show enlarged lymph nodes in abdomen; pill cam obviously can't.
4. MRE can show fistula that pillcam can miss

As for the stool tests, yes, it of course should be done first, and often, but I've learned the hard way not to just assume doctors do tests, no matter how obvious they seem.

If the quality of the MR images are good - meaning the bowel was distended with contrast and the person was able to hold still well enough - then, yes, they can show ulcers in the lining. But if the images aren't really good (not enough oral contrast to distend the bowel or the person's breathing made the images a little blurry), then they can miss ulcers.

So a capsule endoscopy is better overall in providing a look at the inside of the small bowel. But in every other respect the MRE is better. And the capsule endoscopy has the risk of getting stuck if there is a stricture; so once a diagnosis of Crohn's is determined, doctors tend not to use the capsule any more for follow-up and instead rely on other tests.

CT enterographies and MR enterographies both provide excellent image quality. Both have minor pros and cons in terms of what they visualize best, but they're both really good overall.

The main difference is that CT enterographies are quicker, and cheaper too I believe (in part because they're a little quicker). But they expose the patient to a relatively high amount of radiation (the amount of radiation exposure from CT scans varies wildly depending on the exact type of scan, and CT enterographies are on the high end).

So for younger people who may/will need many scans over their lifetime, MR is the way to go, with CT done only occasionally if at all.

For older people, CT scans are done sometimes. The models for cancer risk from CT radiation exposure indicate that if one were to get cancer from the radation of a CT scan, it usually doesn't show up for a decade or more. So elderly people getting CT scans is a little more common.

You're welcome. Happy to help.

@NCOT: yes, my Gi stated that the ulcers 'look like Crohn's'.

Okay, that's not conclusive evidence but it's a start. My understanding is that Crohn's ulcers have a typical appearance/pattern to them which doesn't resemble anything else, but I could be wrong. (Ulcerative colitis wouldn't appear in the small bowel, but if it did, then it would look different to Crohn's. Well, most of the time. Indeterminate IBD messes things up enormously, but that's another story.) My reasoning is it if looks like Crohn's, then it probably is Crohn's and can be treated as such.

The raised inflammatory markers are another sign that you have an organic disease which should be treated.

Obviously it's better to get a diagnosis first, but sometimes, for whatever reason, a clear diagnosis just can't be nailed down. It's those times that the GI should think of beginning treatment anyway. If it's Crohn's it'll make itself evident over time anyway, regardless of what meds you are on.

Thanks for your input @HabsHockeyFan!

I have seen my GI last week, so I wanted to give you an update.
During my last exam, the single balloon enteroscopy, the GI did see redneaa and itritation on the spot where they previously saw a cluster of 5 ulcers, but the ulcers were gone. She therefore decided not to take any biopsies, making this exam pretty useless for me.

So back to the GI appt: she basically said that while she cannot exclude Crohn's at this moment she simply does not have enough to conclude that my current misery is causes by Crohn's and/or Crohn's alone. It basically comesdown to the fact that my bloodwork is so bad that they would expect to see much more inflammation in the intestines if it was (solely) caused by Crohn's.

I do have a persistent GI however, she said that something is definitely wrong and we teally need to continue the quest for a diagnosis. She suggested that perhaps it was caused by another auto-immune disorder named Vasculitis (I had never really heard of it), which she wants to look at. I have had extensive amounts of blood drawn for additional bloodtests, this time including ANA and ANCA, don't know if any of you are familiar with this?
She also scheduled a CT scan with contrast on 31 March. I will also get the pillcam a second time, because she wants to see what mu intestines look like now. After the CT I will get a call-back to further discuss, not waiting for the pillcam results.

Finally I told my GI about the problems I had with my lower legs. Don't remember if I told you about this but my physical therapist told me that allmy lower leg muscles crampwd up and did not go out of the cramp anymore. She suggested it must be a lack of magnesium/potassium for it to get this bad. Hence my GI ran tests for these as well but she figured all would be normal since I had been prescribed liquid nutrition (high in energy and all minerals needed) since three weeks. My potassium was indeed ok, my magnesium was just within the normal range (leading my dietician to convlude that there must indeed have been a shortage), but my phosphorus level was too low. I have not spoken to my GI about these results, but my dietician said that this indicated malabsorption in my bowel as this mineral is normally present in abundance.

Soooo, just wanted to update you and share my story. I am still very fed up with all these tests, bur of course I do want to now what the f is wrong with me. I still think it is Crohn's, but I will just have to wait and see. All your advice and encouraging worda are welcome once again. Sorry for the long post!!

Hi Nikki,

They should not be basing your Crohns diagnosis on infammation markers alone. I was in an insane flare and showed nothing in my blood work. Is this your first MRI with contrast? If so you would think they would have done this imaging sooner. It really sucks and I hope it goes better for you than it did for me. Malabsorption from Crohns is a common issue for most of us at varying degrees.

I agree that it sucks going through all these tests with no results and all you end up with is a ton of sucky bills. Hopefully they can figure this out soon so you can move forward and start feeling better.