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Crohn's Disease Forum » General IBD Discussion » Is it possible that I don't have crohns?


04-07-2016, 12:05 PM   #1
BodieJaker
 
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Is it possible that I don't have crohns?

Bear with me. I have a theory but first I'll give you my history.

All my life as long as I can remember I've had problems with tummy aches and diarrhoea. Then when I was at uni and stressed and depreased from 18-20 it got worse, to the point where 4/5 bowel movements a day and blood a few times a week. I went to the GP a few times and had IBS and food diaries suggested but that never helped (I wasn't eating very well, not terribly but plenty of processed food).

In September 2012, now graduated, I had crippling stomach pain one day at work. I collapsed and ended up being ambulanced to hospital. They thought it was my appendix and took me to surgery, but it turned out to be a big ovarian cyst that had burst.

I continued seeing the GP and in December 2012 I then had a colonoscopy and was found to have inflamation right at the ilioceacal junction. They took biopsies and I was diagnosed with crohn's from that.

I tried asacol and pentasa at first but neither seemed to improve my diarrhoea, discomfort and bleeding so I had an MRI which showed again active inflamation but only at the very terminal ileum. I was put on Azathioprine. Two years later my symptoms have reduced at times but never totally cleared up, and I'll often have bad weeks. In the interim I've struggled a lot with fatigue and depression. I've never felt like I was "in remission" but my fecal samples and bloods came back clear so it was suggested I had IBS as well as crohns. In 2015 I was tested Bile Acid Malabsorbtion and that was positive so my symptoms were put down to that and I was given coleveslam, which certainly helped woth my sore anus from diarrhoea but not the stomach pains.

I also get left sided tension headaches/migraines, and have dry skin rashes which both seem worse with stress and when my guts are bad. I'm obese, though I wasn't when I was 18, I had struggled with my weight as a child. Often when my abdomen hurts I crave carbs and stodgy food, something about feeling full makes the pain better temporarily. I don't have a very healthy relationship with food and I know I do overeat and not chew my food enough.

So, in September 2015 I moved to a new city for a new job in a hospital, I'm a trainee with lots of coursework and exams so it's quite stressful. It wasn't until march I finally got my appointment to see a new gasro doc here. She said again it sounded like I was in remission but with IBS. She sent me for an ultrasound to double check I'm in remission. I had it today and he again found I have active disease around the ilioceacal valve but no where else.

So the question I want to ask my Gastro now is:

Is it possible that I don't have crohn's disease? That instead I have some problem with my ilioceacal valve (either physiological or damage I've caused with bad eating habits and stress) and the reflux of acidic and bacteria ridden nastiness from large>small intestine, combined with poorly controlled emptying of terminal ileum into the ceacum, could be causing all my symptoms? The acid could be causing the inflamation seen in tests and that's why it's so localised?

Does that sound reasonable? I've never felt like I "really" have crohn's when I've met a lot of other crohnies, I've never had a flare as bad as many of yours sound, or been in remission. I've asked both my gastros and IBD nurses how sure they are I have it before and they always give evasive answers like "you wouldn't be on Azathioprine if we weren't pretty sure!"

I guess I just want to see if that seems logical or crazy to any of you?
04-07-2016, 05:31 PM   #2
ronroush7
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Anything is possible. At the same time, not everyone's body always shows up with the same symptoms. You van always go for a second opinion. Let us know how you are
04-07-2016, 05:52 PM   #3
Clash
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You say you were diagnosed with biopsies. Of the biopsies showed granulomas then that's the gold standard for diagnosing CD.

The location they keep finding inflammation, the ileocecal valve is the most common place CD is found. And for alot of people with CD it doesn't progress to other areas though for some it does.

There are people with CD that are asymptomatic, experience no symptoms.

If you are concerned you could ask about the biopsies and explain your theory. Making a list of your concerns or questions is usually best as that way you can go over each in depth.
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Clash
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-07-2016, 08:01 PM   #4
Ihurt
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Anything is possible. I have gut issues but have not been diagnosed with Crohns. My GI doc keeps saying IBS even though I have had elevated C-reactive protein and Fecal calprotectin levels!.

One thing I can say is that my sons best friend was dx with Crohns when he was 16 yrs old. He was put on steroids and another medication for awhile and he got better. He stopped taking medication after a year. He is now 24 years old and has not been on any meds for a long time( he does not have health insurance) but he is fine, no issues. He eats and drinks alcohol and still is okay, no symptoms.

I mean so it could be that you may have just mild crohns. I am also sure there are other things than can cause the same symptoms as crohns too. For instance, people can get bloody stools from taking NSAIDS and other medications so it is really hard to say.
04-08-2016, 10:29 AM   #5
BodieJaker
 
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Thanks everyone. I feel much better today. I think feeling like something feels very wrong in your body when you're being told by doctors that everything is inconclusive, uncertain, unlikely, can really make you lose faith in them. When I guess I know really that a mild/atypical crohns presentation is more likely than some other condition no one has thought of.
04-08-2016, 11:58 AM   #6
Ihurt
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I have totally lost faith in western medicine. I have been sick with chronic illness since 2003. I can tell you I have seen MANY doctors over the years and they have helped me very little. Sadly doctors are not good when it comes to treating or even finding out what causes these chronic illnesses. They just treat the symptoms. They do look for a root cause. One thing that amazes me is that since I got sick( I have been dx with Neuropathic dysmotility of small bowel, Interstitial Cystitis which is the worst, Fibromyalgia, Possible lyme disease, IBS though I question this as I have had blood work show elevated inflammatory markers as well as a stool test and in my opinion IBS is just a term they use because they really do not know what is wrong).

Kind of like with my Interstitial Cystitis, it is just a name they came up with. Interstitial Cystitis likely has different causes for everyone. This would explain why some treatments can help one person, but not the next even though they have the same illness. I believe the same goes for Crohn's disease and other chronic illnesses. I know a woman who has crohn's and hers was able to be controlled by a special diet alone. She is on a very strict kind of diet. One thing that to this day amazes me is that I have not once had one doctor talk to me about diet. Diet can play a huge role in disease manifestation. I do not think diet alone causes any one disease, but it can motivate it. There is tons of bad things in the foods out there ( pesticides, GMO's etc..). Food is not the way it once use to be. Food now days are laden with all sorts of crap and preservatives. These things are known to take a toll on the body, especially in a person who is immune-compromised for any reason.

I have a very hard time when it comes to Western med doctors. Put it this way, when you get an illness that is chronic you obviously start hunting for a doctor who can help you. Well I learned pretty fast that there are not many Doctors who are truly knowledgeable when it comes to these kinds of chronic illnesses. They wont look beyond the scope of symptoms of disease and will not look at the body as a whole. It is sad.









Thanks everyone. I feel much better today. I think feeling like something feels very wrong in your body when you're being told by doctors that everything is inconclusive, uncertain, unlikely, can really make you lose faith in them. When I guess I know really that a mild/atypical crohns presentation is more likely than some other condition no one has thought of.
04-08-2016, 04:44 PM   #7
Plittler
 
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My inflammation was located just at the ileocaecal valve and was recently diagnosed after having a resection. Sometimes you just have to try and trust the doctors, difficult sometimes I know!☺️
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