Crohn's Disease Forum » Your Story » Getting diagnosed!

08-24-2015, 11:20 AM   #1
Join Date: Aug 2015
Getting diagnosed!

Hello, I'm new to this forum and would just like anyones help and insight on getting diagnosed really! I have been suffering with digestive problems since the age of 10 (I'm 21 now), having been diagnosed with GERDS at about age 15. However, since about 3 years ago my digestion has got progressively worse, I started suffering from extreme bloating, so much so that I look pregnant! Along with nausea, headaches, a mixture of both constipation/running to the toilet which changes day to day, feeling tired and weak, extreme thirst and just having the worst time when it comes to food. I lead a pretty healthy lifestyle, I exercise 4-5 times a week, eat only wholegrain bread, rice etc and don't drink much alcohol at all. Therefore on paper I should be perfectly fit and healthy!! However, since suffering with an awful sickness bug about 2 years ago I have just not been well since.
I have had numerous tests done, all blood tests come back normal. About 3 months ago I underwent a colonoscopy and endoscopy both of which came back fine. Recently I had an MRI scan of my small bowel and have an appointment in September with my consultant which I'm guessing is when I will find out the results. The only definitive result I have is that I now suffer from Iron deficiency, with my iron stores dropping as low as 6 recently.
After reading about Crohns I believe it could be that, however I have not have an extreme amount of weight loss like many. What I wanted to find out with this forum is did anyone who has Crohns not experience much weight loss yet have the same symptoms as me, and how long did it take to get diagnosed/how were you diagnosed?
I know a friend who took 15 years to get diagnosed, which I really hope doesn't happen for me!! I'm incredibly fed up with not being able to eat properly, being so bloated and just generally feeling bleugh!!
So any help would be massively appreciated!!

08-24-2015, 11:52 AM   #2
Join Date: Jan 2015

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Sorry that you are suffering; I am almost in the same boat as you, although in a much more unkind and brutal environment. My colonoscopy and blood tests were normal as well. May I know what iron store you are talking about, is it the Hb level?

Edit: I looked up, this is probably the ferritin levels (normal > 11). I did my Hb, and it was normal at 14.1. They did not care to do my ferritin.

08-24-2015, 12:03 PM   #3
Join Date: Aug 2015
Hi thank you for your reply!!
Yes I meant my ferritin levels, mine were at 6 from my last blood test, so they put me on tablets for two months. That was about 2 months ago now, though I'm feeling pretty unwell again so think I need them tested again!!

My Hb levels were just inside normal bordering on low. My GP didn't seem concerned about my incredibly low ferritin levels and actually asked me if I wanted the tablets which is ridiculous!! Neither did she think that it could possibly be linked with my digestive issues .

What stage are you at now with getting diagnosed? It is incredibly frustrating when everything is coming back normal but you still feel like crap!!!
08-24-2015, 12:09 PM   #4
Join Date: Jan 2015

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I agree with you. It is incredibly frustrating, and especially when you know that something is wrong, and no one cares. Everything falls apart, work suffers. In a developing country, this is even worse, and physicians treat you like dirt. A 2-bit idiot psychologist called me a hypochondriac.

I do not know whether at all I would be diagnosed and when - you can read my account here: I would go home to Calcutta from my institute town in mid September and press again for a diagnosis. I really feel blue, just as you do.

Best wishes.
08-24-2015, 03:07 PM   #5
Join Date: Jul 2015
Location: Melbourne, Victoria, Australia

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Welcome-sorry to hear about your symptons. Have you had any bleeding, abscesses, fissures etc? I'd be looking for other symptons out of IBS, which could be your cause? I'm no Doctor of course and am only prsenenting other possible causes. Also I would look into food intolerances as a possible reason for your symptons. I'm led to believe there are a few (1-2) very distinctive (visible) symptons that set IBS & IBD apart.......I'm still grappling with this myself........

Good luck and I hope it's not CD.
7 Perianal Abscessess April 9th 2015
4 Resulting Fistula's
1 Necrotizing Tissue Infection

2 Setons in place


Flagyl since September 2015
Imuran since January 2016
08-25-2015, 09:19 PM   #6
Join Date: Apr 2014
Hello Emma,

I can imagine the suffering you are experiencing. It's not easy to cope with these symptoms in addition the uncertainty you are going through.

After reading your post, I'm glad you didn't mention pain as a symptom. The nature of Crohn's Disease makes pain a very important symptom that can tell how the disease is progressing. I did have a normal colon and stomach at some point during my life and had iron levels of an anemic person because my disease is focused in the small intestine. Whenever I tell the doctor of a new symptom he asks me "Do you have pain?". You can read the stories here and see how often the pain is mentioned.

In case of Crohn's, bloating can happen because food is passing through your digestive tract at slower pace that it should because of a narrowing in parts of the small intestine. Which means that the intestine is not expanding sufficiently to accommodate the passing food and therefore leading the food to "force" squeeze itself into an inelastic tube. Can you imagine that happening without "severe" pain? It's unlikely. And again, when I told my doctor that i suspect a narrowing in my intestine he asked me "Do you have pain?".

As for the toilet frequency, did you try to log your food and see what might cause constipation or the opposite?

The worst part of this is that Crohn's Disease has a variety of symptoms that vary between people and some symptoms are general and can be mistaken for another condition.

Watch your symptoms closely and try to recognize the patterns that are occurring, for example, headache happens 3 hours after every time you eat, or continuous dizziness regardless of hkw often you sleep, or Bloating after certain meals etc. This cam help narrow the symptoms to something less uncertain.

I really wish you all the best with your health and I hope that whatever you are suffering from is easily treated.
09-02-2015, 07:59 AM   #7
Join Date: Aug 2015
Hi all thank you for your replies, I see what you mean about pain. Pain is a symptom of mine but it isn't after every meal therefore I often forget to add it in when talking about my symptoms, It comes and goes from day to day. I often get a sharp stabbing pain in the right side of my abdomen, but like I said this isn't after every meal, so I often forget to mention it to my GP/Doctor, the worst it has been has left me crouched on the floor waiting for it to pass.
I have logged my food before, I have also tried numerous diets from FODMAP to cutting out gluten, but neither worked well if Im honest. I have a follow up appointment soon to discuss my MRI results so Im really hoping this sheds some light. I know how difficult it can be to tell the difference between IBD and IBS, and of course Im hoping it's not as bad as Crohns but some answers would be lovely. I have an extensive close family history of digestive diseases and IBD from Ulcerative colitis to Diverticulitis so it wouldn't be unsual at all if I end up with IBD.
I am starting to believe it is a food intolerance, fruit and vegetables seem to irritate my stomach, and alcohol is a massive no now, I cant even manage one glass of wine!! I am really hoping the doctor will refer me to a dietitian who can help me work through a plan.
I would just love some answers so I can finally stop feeling so rubbish!!
Thank you to everyone who has tried to shed some light for me I really appreciate it! It is so comforting to know Im not alone in suffering with these problems

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