Holes & Iletis but not crohns?

[Temptab]

Have been ill for five years and the care has been a joke. Anyway, finally got camera, endo and colonoscopy. Found Iletis, eroesions, inflammation and holes, some quite deep in small bowel and stomach. I've collapsed, felt I'd die, blood and mucus diahhrea, severe fever, toilet up to 20 times a night ...but I'm told they can't defenivitvely diagnose crohns?? Now my daughter has come up IBD this past week from calprotectin Never taken NSAIDs. What does one need to get a diagnosis and get help..it's an endless nightmare...is there some magic trick to getting that diagnosis, what am I missing? If not crohns it doesn't fit much else? Giving up up gluten is the only thing stopped me dying by degrees

 

[Jabee]

This sounds just awful. Did they give you any idea what is causing the inflammation? Did you test positive for celiac disease? It can do quite a bit of damage if left untreated (before I was diagnosed with celiac disease there was a hole in my duodenum from it, fortunately I responded well to going gluten-free; this was a few years before crohn's). Have they seen the inflammation since going gluten-free? With celiac disease you still need regular monitoring if anything is wrong (pain, anemia etc.). Are you being treated at all? And does your daughter's GI know about your problems?

 

[ronroush7]

I am sorry you are having trouble getting a diagnosis. I hope they can give you some answers soon.

 

[Temptab]

Yes, gluten free has saved me. I've been gluten free since July last year when I collapsed last. That's helped with 80% of symptoms. I need Zantac each day multiple times. I did celiac panel but came up empty. Inflammation was on biopsy done last month. Yet to even see a GI to tell them anything. In 5 years no treatment. It's been endless stuff ups.

 

[Jabee]

Then it sounds like you really need to see a GI. Have you been referred to one? If you have all that inflammation on a gluten free diet and didn't have a positive antibody test (with celiac the intestinal villi are also flattened, although that can happen with Crohn's disease and some infections, too) then it sounds like you need some serious treatment. Does your daughter have a GI.? Perhaps he/she can be helpful. I really hope you get answers soon.

 

[eleanor_rigby]

Coeliac disease should not affect the ileum like that, that would be extremely rare. This sounds very much like Crohn's but the colonoscopy biopsies will have not shown granulomos, apparently needed for a pathologist to confirm Crohn's. However a large proportion of Crohn's patients do not have granulomos on colonoscopy, therefore a good GI should still be able to make a diagnosis using their knowledge and expertise. That was the case with me. I find the fact that you have holes very concerning. When are you meeting your GI next?

 

[Temptab]

I had no granuloma so he gave no definitive diagnosis. I was told a couple of holes are quite deep.i have episodes of needing to get to toilet, collapsing, flushing heat sweat, really feeling like I'm on my way out. Worst incident culminated in blood and mucus cramping diahhrea. My care has been a joke for past 5 years from doctor who said " do you really need a name for your problems?" To messed around dates. I'm meant to see GI in a
April now, was meant to see in march but one time he left early, second time they gave me a wrong date

 

[Temptab]

This sounds just awful. Did they give you any idea what is causing the inflammation? Did you test positive for celiac disease? It can do quite a bit of damage if left untreated (before I was diagnosed with celiac disease there was a hole in my duodenum from it, fortunately I responded well to going gluten-free; this was a few years before crohn's). Have they seen the inflammation since going gluten-free? With celiac disease you still need regular monitoring if anything is wrong (pain, anemia etc.). Are you being treated at all? And does your daughter's GI know about your problems?

No, they gave results to doc to relay to me. No advice or recommendations. I was tested for celiac but was neg. my calprotectin and inflammation blood test were also normal, strangely enough. So I was lucky to even get colonoscopy. These were both done after giving up gluten and getting a bit better. Yes, the colonoscopy and endo were done a few weeks ago. I gave up wheat after I last collapsed in July, as collapsing was become semi regular event and I was desperate. My daughter was diagnosed as IBd just this past week from her calprotectin. I hope this might secure a definitive for me.
So yeah, all that inflammation was there even though I've long quit gluten. It's stopped the collapsing episodes and associated illness that sweeps over, but I still need Zantac everyday. I'm not sure why my calprotectin was normal, other than they lost the first lot, and by the time I did second test I'd been on super plain diet for nearly a month. So maybe that swung it? Like I said, my care has been ridiculous, almost comedic

 

[ronroush7]

That doesn't sound right about your care. Sorry.

 

[eleanor_rigby]

Deep holes are not good, it sounds to me like you are at risk of your bowel perforating. I would suggest changing GIs as a matter of urgency. You may even want to change hospitals as well. Can you go back to your GP and ask for a change? Where are you located?

If your symptoms deteriorate please go to your emergency department. If you get any of the following symptoms please go to your emergency department without any delay:
-Fever - (sweating, shivering, weakness, extreme body temperatures)
-Severe abdominal pain
-Dehydration
-Vomiting with abdominal cramping
-If you collapse again

 

[Scipio]

I had no granuloma so he gave no definitive diagnosis. (

That's crazy. It's true that finding granuloma in an inflamed bowel definitively diagnoses Crohn's, by no means is the converse true. The presence of granuloma an not an absolute requirement for a Crohn's diagnosis.

In fact, in the majority of Crohn's cases no granuloma is ever seen. Here's paper showing that granuloma was observed in only 37% of the 188 Crohn's cases examined. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774855/pdf/gut05400215.pdf

There are lots of other papers like this too.

Given your highly inflamed ileum with near perforation, IMO your doc should be treating you very aggressively for Crohn's disease, granuloma or no granuloma.

 

[Temptab]

Can a doctor treat you without the diagnosis from specialist? Or it's not their call? I got the impression my doctors hands are tied without definitive diagnosis?

 

[Jabee]

GIs treat bowel diseases, so a specialist would be the doctor who determines your treatment. Your GP can certainly monitor you in between visits with your specialist. Crohn's is often diagnosed without a definitive biopsy, based on symptoms and positive imaging.

 

[Scipio]

Legally, pretty much any licensed medical doctor could theoretically diagnose and treat you for Crohn's. But for a serious and difficult disease like Crohn's the diagnosis and treatment is almost always done by a GI specialist. But what puzzles me is that your GI apparently will not diagnose Crohn's without seeing a granuloma. If that's the case he's going to misdiagnose (or fail to diagnose) an awful lot of cases of Crohn's

My GI diagnosed me with Crohn's based on symptoms (abdominal pain) and severe anemia apparently caused by intestinal bleeding combined with ileal aphthous ulcers seen via capsule camera. Inflammation of the ileum was later confirmed and the extent measured by MRI, but that was after diagnosis. None of the large bowel biopsies taken during the colonoscopy showed any granulomas and the small bowel was not biopsied.

There are lot of different combinations of signs, symptoms, procedures, and tests that could add up to a Crohn's diagnosis, and many of the these combinations do not involve seeing a granuloma.

If your GI will not diagnose Crohn's without first confirming granuloma I suggest you get a new GI.

 

[Temptab]

I'm 7 hours away from nearest city and relying on visiting GI. He comes every 6 weeks. This is gonna start becoming really expensive I can see . I was diagnosed as having ileitis. From What i can make out that is basically crohns. I'm really not sure why I just didnt get the definitive. Hopefully when I see him and launch my case he will change his mind?? I'm sick of wasting time.

 

[Lady Organic]

personally, I would ask for the endoscopy results on prints and see another GI doctor, even if that means traveling away. You have had enough suffering. If it is a gastroenterologist who performed your colonoscopy and who saw inflammation in your ileum, is aware of your debilating symptoms, he -should- give some treatment. The absence of granuloma on bisopsy is very common for a lot of crohn's people, this includes myself. No biopsy has ever confirmed any diagnosis in my case.
In the meantime, if you notice eating gluten free helps you (reduces 80% of your symptoms), I would really suggest a diet approach such as IBD-aid diet for instance. Look for it in my signature, maybe that could help you even more. Wishing you well.