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Not your typical symptoms...

Hi guys!

I'm completely new to this so I just wanted to share my story so far and see if anyone has been in the same boat as me. I am currently un-diagnosed (suspected Crohn's) but waiting for further tests however I dont have the typical symptoms most Crohn's sufferers do.

I'm a 20 year old teaching student from New Zealand and until last year had never really had any major health problems apart from getting the flu more often than i suppose normal people do (I presume my immune system just isn't brilliant)

For me it all started about 8 months ago when I started developing severe pain on my left side of my abdomen which also lead into chest pains. I went to the doctors for this and was told I had gastritis and given Omaprazole to take. After about a week everything was fine and i thought nothing more of it, continuing to take my Omaprazole for gastritis.

Then about 3 months later I had the same pains. They were so bad I could hardly move without them starting up and it was incredibly painful whenever I ate. I went back to the doctor and had my pills changed for my gastritis. However about 2 days later I went to the emergency room in extreme pain. I was told I had Bronchitis and was given anti-biotics and sent home. After about 4 days the pains had gone again so I thought nothing of it.

But the pains came back about 3 months ago. Went away for a few weeks and came back. By this stage I knew something wasn't right and after several doctors consultations where I had extreme tenderness in my lower right and upper left abdomen my doctor advised me to go straight to A & E as they thought I had an appendicitis.

I spent the next week in hospital after having exploratory key-hole surgery where they removed my appendix which had quite a lot of scar tissue surrounding it and they also had to clean out some blood they found in my abdomen. They believed this was the source of my pain. I went home on the Saturday after the surgery and was recovering well and was up and about. By Friday I was starting to get the painful stabbing pains again in my lower right abdomen and by Sunday morning the pain was so bad I was rushed to hospital again. The medical team were fantastic and preformed every test under the sun including a CT which didnt reveal anything so I was told it was likely just still healing pains and sent home.

I still had severe pain for the next week but started to feel better. So I decided I was well enough to start my final teaching practical (which started 4 weeks after the appendix surgery). 2 and a half days into it I was feeling very unwell again and starting to have abdo pain again and I ended up collapsing in class.

At this point I went back to the doctors again. My doctor is fantastic and consulted with other doctors right away about my case and last week I was told they think I have some form of IBD, they suspect crohn's. I have an appointment tomorrow to get specialist referals to have the diagnosis confirmed.

I've been reading a few posts but my symptom's seem to differ from the norm of crohn's.
I've had:
- Severe abdo pain (mostly lower right but with some higher left)
- Constipation
- Blood in Stools
- Mucus in Stools
- Extreme Nausea/ Occasional Vomiting
- Tiredness
- Weightloss
- Fevers
- Constant Headaches

So far all of the tests including the CT and bloods are normal (except for an extremely high inflamation count. The norm is 5 whereas all of my blood tests have been between 35 - 80 and even as high as 98 right before my appendix surgery). So whatever is wrong is doing a bloody good job at hiding!

The past few days have been pretty bad. I've actually had to drop out of my teaching practical because I simply can't do it with the pain I'm in.

Obviously this is only a suspected case of crohn's but because I dont have the usual symptoms I was wondering if anyone else has a similar kind of story to me?

Nicole :)
 
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Angrybird

Moderator
Location
Hertfordshire
Hello Nicole and :welcome: to the forum. The symptoms you have listed can definetly be found in people with an IBD (either crohns or ulcerative colitis) and quite a few here have experienced at least one of them so you have come to the right place to get some helpful info.

One thing I would ask is have you had a colonoscopy? This can be really good at actually showing what is going on inside the the colon right up to where it meets the small bowel which is where crohns is commonly 'found'. Having biospsies taken from the bowel can also help towards a definitive diagnosis. When are you next due to see your doc about this as if this test has not been done then it is worth asking about it.

I hope you can get some answers soon and can be getting better on a working treatment plan. You may also find it helpful to check out the undiagnosed sub forum as there will be people here also in the same position as you are right now who can offer support and advice: http://www.crohnsforum.com/forumdisplay.php?f=75.

Please keep us updated on how you are getting on.

AB
xx
 
Saw my doctor yesterday and I've been given a hospital outpatient refferal to try do some more tests to come up with a diagnosis.

On the plus side though this particular flare up seems to be ending and my CRT levels are back down around normal and i've had barely any abdo pain today :)

Just really want to know whats up because there has to be some reason for all these symptoms and the flare ups.

Just have to wait now for the hospital to contact me and hope that whatever is wrong stays away for a little while!
 

Angrybird

Moderator
Location
Hertfordshire
Fingers crossed these appts will come through soon for you. One thing it may be worth trying whilst you wait is to start a food diary so you can at least see if there are any foods that exacerbate your symptoms. Some here find this can really help and depending on pain levels/symptoms it can even be worth going onto a liquid only diet as this can really ease things with the tum....
 
So far over the last 8 or so months I've learnt that alcohol is definitely a no go! (which for a student is like a death sentence.... guess who's always sober driver now!) Last time I had a glass of wine I ended up in hospital the next day in intense pain! And every other time it's lead to horrible abdo pains again for a week or two.
Otherwise I haven't really noticed specifically any foods that set me off but I'm definitely going to start a food diary and track how it affects my bowel movements as well.

I'm lucky enough to have skipped the diarrhea symptom everyone else seems to get but I have had constipation with blood/mucous which is not fun so I wonder if that is linked to any specific foods.

Thanks for the help :) Nice to know other people understand the kind of thing i'm going through!
 

David

Co-Founder
Location
Naples, Florida
Hi Nicole and welcome! I'm so sorry to hear of all your trouble :(

That everyone with IBD has diarrhea is a bit of a misnomer. It's actually not all that uncommon for people to have constipation as well; you'll find many here.

Considering your symptoms, in addition to that colonoscopy, I would suggest you demand a test such as a capsule endoscopy, small bowel follow through, or other test that can see higher up in your small intestines. I'll bet money they find something higher up than the colonoscopy can see.

We also have an undiagnosed club that is full of wonderful, supportive people in the same boat as you.

We're here for you!
 
Kia Ora Nicole..

good to see a fellow kiwi here :) I'm from CHCH. I'm undiagnosed at the moment too but am having the pillcam on the 6th June which will hopefully find something to explain the pain and confirm what was seen on CT enteroclysis.. I reckon not knowing is the hardest thing.

Kia Kaha
 
Thanks Brian!

So nice to know somebody else is in the same boat as me. Almost wish I did have the 'normal' symptoms just so they could work out what was wrong with me a whole lot faster.

I've actually spent the past 2 days throwing up everything and feeling very unwell so really unsure what to do next. Beyond frustrated now and just want answers!

Hi Leebie :) I'm currently studying and living in Hamilton but I'm from Hawkes Bay. Awesome to have another kiwi on here!!!

Nicole
 
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