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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Help please - gastro tells me to get over it?


12-08-2016, 05:53 PM   #1
juliaanna1701
 
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Help please - gastro tells me to get over it?

Hi all - I am at my wits' end - can someone just let me know if I am on the right train of though? My problems have been going on for years now; I am only 26 and this is not a way to live in constant pain. I am just so tired.

Long story short, I have coeliac disease, gastroparesis + Eosinophilic Eosophagitis but aside from that I suffer from MULTIPLE gastrointestinal problems that really affect my quality of life; can't gain weight and struggle daily with severe cramping, gas, regurgitation of food,tiredness, ulcers and pain (especially after eating and localised to the descending colon) are a few, not to mention having a bowel obstruction requiring hospitalisation three times now. Constipation is a massive problem, along with involuntary vomiting and inability to digest some foods. My diet is limited to soft foods that are easy to digest. I still make sure I get adequate fibre and water though.

My calprotectin tests came back at >300; specialist told me this was normal as I have also had a colonoscopy + endoscopy that came back clear, apart from small polyps in my colon and inflammatory cells present in my oesophagus.

Is there a chance I can still have Crohn's disease? I have all of the other symptoms, minus the positive colonoscopy results. Specialist has said it is all in my head the symptoms cannot be that bad based of my test results and all I need to do is to eat more fibre (which only makes my problems 100x worse and I have said this to her numerous times) Apparently I just have slow transit time for bowel movements.

Please help?

Last edited by juliaanna1701; 12-08-2016 at 11:52 PM.
12-08-2016, 06:09 PM   #2
ronroush7
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Hi. Maybe you need a second opinion. Crohns Disease can affect different people in different ways. It is possible you have Crohns but I don't know. .

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12-08-2016, 06:11 PM   #3
Cat-a-Tonic
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Hi, I'm so sorry to hear you've been suffering and not getting the help you need from your doctor, that's terrible. To answer your question as to whether you could still have Crohn's - the scopes don't really look at the small intestine at all, aside from the very beginning and the very end of it, but there's a whole lot of small intestine that they don't see. And Crohn's can manifest anywhere in the digestive tract, so it could very well be hiding in your small intestine. Long story short, yes, you absolutely could still have Crohn's. The fact that your inflammatory markers are up and that you have ulcers and vomiting and that your weight is down, that sure sounds like it could be IBD to me (I am not a medical professional by any means though, so definitely continue pursuing medical testing). Certainly it's not something that you can or should try to just "get over". It's something that absolutely needs further investigation and proper treatment.

If that's your doctor's attitude, the first thing I'd do is to find a new doctor. They should not be dismissive of your pain & symptoms like that, that's awful! Find a doctor who takes you seriously, that's the key. Once that's accomplished, if it were me, I'd request tests to look at the small intestine. I'd ask for either imaging tests such as CTE or MRE, or a pill cam (also known as capsule endoscopy - you literally swallow a small camera the size of a pill and it takes photos all throughout your small intestine).

As for the fatigue/tiredness - have you had bloodwork done to look at your vitamin levels? With IBD, certain deficiencies are common and can cause fatigue - look into having bloodwork done to check your levels for vitamin D, vitamin B12, iron, and folate. I can tell you from experience that I had a severe iron deficiency last year and it made me horrendously fatigued, I could have slept 24/7 and still been exhausted. I got several iron infusions, and it made a world of difference. So for the fatigue at least, you may be able to get some relief reasonably easily if it is indeed due to a deficiency.
12-08-2016, 06:29 PM   #4
ronroush7
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I was surprised the doctor said the fecal calprotectin was normal.

12-08-2016, 09:41 PM   #5
my little penguin
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Could be lots of things and not just Crohns
Inflammatory cells in the esophagus
Eosinophilia disorders such as EoE
Trouble eating -EGiDs or gastropatesis
Poor motility (thyroid issues )
The list can go on and on
My point is don't try to stick to one dx
Try to work with a doc who wants to figure out what is wrong not one particular thing is wrong

They (many different docs) thought ds has eosinophilic Colitis when he wa scoped
Came out and said he had a normal scope and it was food intolerance
Biopsies came back for Crohns
Later trouble eating abdominal pain etc..,
Kept looking for a Crohns flare
Nope took alotlonger to figure out it was gastroparesis

Hope you find answers
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12-08-2016, 11:48 PM   #6
juliaanna1701
 
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Thanks everyone - I have been diagnosed with gastroparesis + Eosinophilic Eosophagitis in the past, but the digestive symptoms I am having seem to affect my gastrointestinal tract far more which is why I am concerned it may be IBD.

As a student in the public health system, I am not in a position to seek a second opinion quickly (the waiting list is so long) so I will seek the advice of my gp to see what other options are out there. From the outset my GP has said it seems like a classic case of Crohn's disease, esp when she puts me on steroids + antibiotics all the symptoms improve dramatically; when I had my colonoscopy + endoscopy, I was just finished a two month course of antibiotics; would that make a difference?

I just got unlucky with my gastroenterologist sadly; it is so hard when people tell you it is not as bad as you are making out and to stop making such a fuss. It really gets to your self esteem, along with everything else I have going on.
12-08-2016, 11:54 PM   #7
ronroush7
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If it is Crohns, you will probably need something more than antibiotics.

12-09-2016, 06:27 AM   #8
juliaanna1701
 
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Yes I know - my specialist is not willing to though. Question: does a colonoscopy + endoscopy go through the whole digestive tract or can it miss sections of the small + large bowel? I thought it did?
12-09-2016, 06:32 AM   #9
ronroush7
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I don't think so. There are others who know better than I. I would consider looking for another specialist.

12-09-2016, 08:36 AM   #10
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With colonoscopy and endoscopy there is a large portion of the small bowel that cannot be visualized. An MRE or pill cam can be used to visualize that area. Of course, neither of those tests offer the benefit of biopsies in the small bowel but they can show thickening(mre) or inflammation/ulcerations (pillcam).
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12-09-2016, 10:24 AM   #11
MissLeopard83
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Hi all - I am at my wits' end - can someone just let me know if I am on the right train of though? My problems have been going on for years now; I am only 26 and this is not a way to live in constant pain. I am just so tired.

Long story short, I have coeliac disease, gastroparesis + Eosinophilic Eosophagitis but aside from that I suffer from MULTIPLE gastrointestinal problems that really affect my quality of life; can't gain weight and struggle daily with severe cramping, gas, regurgitation of food,tiredness, ulcers and pain (especially after eating and localised to the descending colon) are a few, not to mention having a bowel obstruction requiring hospitalisation three times now. Constipation is a massive problem, along with involuntary vomiting and inability to digest some foods. My diet is limited to soft foods that are easy to digest. I still make sure I get adequate fibre and water though.

My calprotectin tests came back at >300; specialist told me this was normal as I have also had a colonoscopy + endoscopy that came back clear, apart from small polyps in my colon and inflammatory cells present in my oesophagus.

Is there a chance I can still have Crohn's disease? I have all of the other symptoms, minus the positive colonoscopy results. Specialist has said it is all in my head the symptoms cannot be that bad based of my test results and all I need to do is to eat more fibre (which only makes my problems 100x worse and I have said this to her numerous times) Apparently I just have slow transit time for bowel movements.

Please help?
I recommend looking into refractory Celiac disease. It's rare in that most people who have a strict gluten-free diet are symptom-free after a year. However, some people still experience symptoms due to a problem with the immune system producing too many white blood cells. As you may or may not know, Celiac disease is an autoimmune disorder and the white blood cells attack the healthy cells and make the body go into crisis-mode. If your GI doesn't have a solution, I would look into getting a consult with a rheumatologist to have more tests done in regards to your immune system to see if the WBC counts (specificially, T-cells and lymphocytes) and/or cytokines are high. Here is more information:

https://rarediseases.org/rare-diseas...eliac-disease/

http://www.mayoclinic.org/medical-pr...celiac-disease
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12-09-2016, 11:30 AM   #12
Jabee
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Has your entire small bowel been imaged? A traditional endoscopy only allows visualization to the end of the duodenum, and colonoscopy to the end of the ileum, so there are more than a few meters of intestine they can't reach. Severe constipation which leads to a bowel obstruction isn't really an "in your head" thing. My crohn's has been located mostly in my jejunum and ileum, although when it first cropped up it was in my duodenum. Can you get any more imaging done? Refractory Celiac disease also causes anemia and other nutritional deficiencies; can your GP do any blood work?
12-09-2016, 07:24 PM   #13
juliaanna1701
 
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Has your entire small bowel been imaged? A traditional endoscopy only allows visualization to the end of the duodenum, and colonoscopy to the end of the ileum, so there are more than a few meters of intestine they can't reach. Severe constipation which leads to a bowel obstruction isn't really an "in your head" thing. My crohn's has been located mostly in my jejunum and ileum, although when it first cropped up it was in my duodenum. Can you get any more imaging done? Refractory Celiac disease also causes anemia and other nutritional deficiencies; can your GP do any blood work?
Hi all - thank you so much for your comments + advice. Its good to know there are others out there who don't think I am making it all up!
I have had my bloods done by my GP, and they are all okayish - borderline anemia (which is usual for me) vit D is okay along with everything else, apart from sodium which is chronically low + urea is always high. I take supplements though on her advice so hopefully that is helping me avoid deficiencies.
My bloods always suggest I am dehydrated, despite being incredibly thirsty everyday and drinking at least 4 litres to try to stop the feelings of thirst.

I didn't realise the endoscopy + colonoscopy don't get a look at the small intestine - I was told it did (by the specialist, surprise ) I will see if my GP can see if there is anywhere I can have the pill cam done. It sounds as though that might help me find some answers.
According to the last endoscopy my coeliac disease is under control, so I don't think it is refractory coeliac disease, but will look into that more. Luckily my family are very supportive (after seeing me on numerous occasions screaming curled up in a ball on the floor in pain from my GI issues) so maybe they can help me to find another specialist. She comes highly regarded but has no empathy whatsoever.

Thank you all again for your help and if anyone has any other thoughts/opinions, please let me know - its nice to have support for once!
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