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08-27-2013, 05:48 AM   #1
akiva
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Finally plucked up courage

Hi all

Im a 22 year old student nurse who has been suffering with symptoms for at least a year. I was/am scared of being given a diagnosis, but i'm more concerned about not getting one.

I have 2 members of my family with crohns disease. I have no contact with that side of the family, so I cannot talk to them about it.

My symptoms include;
- fevers
- diarrhoea
- sometimes blood/mucus
- my diarrhoea can be various colours, but usually brown, orange or yellow
- hip pains
- lower left quadrant pain which sometimes goes all up the left hand side
- very occasional right lower quadrant pain
- sometimes my stomach 'burns' which isn't relieved by gaviscon etc
- constantly tired
- whenever I eat, 20 minutes later I'm in the bathroom

Ive had a few... near misses recently, but the worst one was last week where I nearly had an accident on the bus home from seeing my friends. Ive tried keeping a food diary (for the past 6 months) but there are no obvious triggers. I finally decided to go to my GP to voice my concerns, which I did this morning. My GP rushed me a bit, as I went in over 40 minutes late (he was running late, not me). He didn't check BP, weight etc, just asked family history and how often I was going to the loo, then felt my abdomen. He's referred me to a gastroenterology team (ill see whichever consultant opts to have me, ill get a letter in the next 10 days telling me who it is apparently). My GP offered me some steroids and something else I hadn't heard of before (think it began with M) but said he really didn't want to put me on them as it would affect any tests the consultants want to do, so im currently not on any medication. I am in a considerable amount of pain (ive dislocated my shoulder twice and had it put back with no medication, but Id rather redo that then put up with this pain) and have been told to take codeine as paracetamol isn't touching it.

Does this sound like crohns to anyone else?

Does anyone have any advice on dealing with the pain and diarrhoea? Its making life difficult, as im not supposed to go on placement if I have diarrhoea (Its supposed to be 48 hours clear, which is a laugh)

Thanks in advance

Akiva

Last edited by akiva; 08-27-2013 at 05:54 AM. Reason: forgot to add some symptoms
08-27-2013, 06:24 AM   #2
dannysmom
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Hi. I am glad you have a referral to a GI. I am hoping you can get in there soon. Good luck.
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08-27-2013, 06:52 AM   #3
akiva
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Ive managed to get an appointment for the end of October, shame its not sooner but at least ive got one
08-27-2013, 07:18 AM   #4
Clash
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Welcome to the forum, so sorry though of all you have been dealing with.

I hope that the upcoming visit with the GI will give you some answers. Although my son's GI suspected Crohn's with my son he didn't px him pred until he had done the colonoscopy since pred can knock down the inflammation, so I see where your GP is coming from with that.

I hope you find some relief while waiting for your appointment.
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08-27-2013, 05:03 PM   #5
akiva
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I told my mum today, and she was devastated that it MIGHT be crohns disease. Basically my aunt (her much younger sister) had the condition and died aged 24 (about 5 years ago). Now I was led to believe that she killed herself (deliberately or not) by overdosing on steroids, but my mum thinks it was the crohns that killed her (we don't know as we don't speak to that side of the family).
This has obviously bought it back about her sister (they weren't close but that was worse in a way as mum wanted to be but was shunned by the family for divorcing my father, who was cheating on her, as that was apparently dishonouring the family)
Does anyone know any sites I could show her that might convince her im not dying?
08-27-2013, 07:49 PM   #6
dannysmom
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The wiki on this forum has some good information to share with your mom:
http://www.crohnsforum.com/wiki/Crohns-Disease

"Living with Crohn's disease
Although there is no cure, a diagnosis of Crohn's disease is not a death sentence. With medication and adjustments to their lifestyle, many sufferers go on to live perfectly normal lifes, while others may find that their symptoms have a minor impact on everyday life."

Sorry about your Aunt.
08-29-2013, 07:10 AM   #7
Axelfl3333
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Sounds like it,can,t you use a bit of insider knowledge as your a nurse and speak to someone at work?it might relieve the stress and worry which makes everything much worse?
Diet wise you,ll know greasy,oily food generally bad,raw veggies,salad,bad,lager horrific its bizarre that so called healthy options are awfull though I,m slowly introducing them back into my diet as I,ve got a bit better chicken and rice does get boring.good luck
08-29-2013, 08:48 AM   #8
akiva
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I would ask people I know through my course, but I'm not admitting to anyone on ky course whats going on. Im scared of being chucked off the course x
08-29-2013, 09:35 AM   #9
Josephine
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I would speak to your tutor about what happens with your health becaue stress alone won't help. I would maybe think of going back to GP and trying steroids before things get worse. I am not saying well but there alway possible, if steriods help little just manage a rountine of sort.
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08-29-2013, 10:33 AM   #10
akiva
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I think ill go to the drs on monday if im no better and get the steroids. I think the other drug i was offered was mesala something. Im gonna talk to a lecturer at uni in a week or so when I finish holidays. Im really luvky that I have alecturerr who I like this year, my tutor is an arse tbh x
09-06-2013, 02:09 PM   #11
akiva
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So little update. Ive had a letter from my new consultant confirming my appointment at clinic and requesting i get the following blood test;
C- Reactive protein
Immunoglobulin A
Full Blood Count
Glucose Random F/O
ESR
Calcium
Vitamin B12
Ferritin
Thyroid Function Tests
Serum Folate
Anti Tissue Transglutaminase Antibodies
U/E
Liver Function Tests

I've still not told anyone at uni as we are still on holiday...so I've got that to look forward to.

I'm going on holiday on Monday to Liverpool for a couple of days, I'm just hoping that taking lots of immodium and cocodamol tablets with me in case of emergencies.

On a side note, although I'm feeling better then I was I've lost 8kg in 2 weeks. Im 5 ft 3/ 5 ft 4 and I weigh about 80kg usually. I now weigh 74kg, its purely from having the squits and not being able to keep anything in longer then about 20minutes. Ive done no exercise at all, ive had no energy, ive just been sleeping, moping around my flat and erm...visiting the facilities :P
09-23-2013, 06:03 AM   #12
akiva
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Well I've told uni, I've had to refer myself back to occupational health (not looking forward to that at all.)
I went to the doctors today and I'm on 30mg of prednisolone for the foreseeable future (he's leaving me on it until the consultants appointment on 31 October)
Hes only given me 50 tablets atm, so that's 8 days worth, so ill have to go back to see him to get it represcribed. hopefully he'll give me more (like 100 tablets) cos it costs 8 a time, and Im a very poor student lol
10-31-2013, 01:48 PM   #13
akiva
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Had my first consultants appointment today. It went quite well, I was there 2 hours, but it was mainly waiting around.

I saw a registrar, who was really nice. After we finished discussing all the symptoms etc weve arranged for me to have a colonoscopy , and go back to clinic in 3 months.

He says my CRP and ESR were raised, but I wasn't anaemic.

Ive also got 3 different poop tests to do

Hes not happy about my GP leaving my on prednisolone and not monitoring me.

He's told me not to take the codeine the gp gave me. ive now got Mebeverine and a months supply of prednisolone to wean off.

He thinks Crohns is a real possibility, but wants the colonoscopy to be done before we start thinking about anything treatment wise
10-31-2013, 03:04 PM   #14
mccindy
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Akiva, good news! Hopefully you get a dagnosis out of al of this. 3 poo tests, how much fun is that? At least it sounds like things went well and you've found a good doc.
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current diagnosis is undiagnosed (possible Celiac disease)

Colonoscopy done August 2013, no evidence of Crohn's seen, biopsies done and one polyp removed.
Polyp is precancerous adenoma

(Diagnosed with a diffuse astrocytoma (brain tumor) 5/31/13.
Craniotomy with tumor resection performed July 2013. 99% of WHO grade II diffuse astrocytoma removed, MRI scheduled every 6 months to monitor for regrowth.)
10-31-2013, 03:22 PM   #15
akiva
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I am quite chuffed with it all in a strange way. Just want my appointments so that I can plan and make sure my partner is off, cos otherwise I cant have sedation
11-01-2013, 07:37 AM   #16
mccindy
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!! Well I hope that works out because I can't imagine having a scope done without sedation!
12-05-2013, 06:19 PM   #17
akiva
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Had my scope today, managed 2 -2.5 sachets of the 4 but luckily it was enough. (It was foul. Ill refuse that prep, it made me sick)
The report on the piece of paper I was give on discharge doesn't sound too promising though
It saysv
Bowel Preparation with Klean-Prep was satisfactory
The colonoscope was inserted via the anus to the caecum, which was identified positively by the ileocecal vave
the examination to the point of insertion was normal.

Follow up - Awaiting pathology

Advice/comments - normal colon but random biopsies taken to exclude microscopic colitis

doesn't sound too promising, but then I had a feeling it wouldn't show much, if anything. was really painful at times though, and that's with 5mg midazolam and 50mg pethidine
12-05-2013, 07:17 PM   #18
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Hi Akiva,

I was initially diagnosed with Crohn's in 1992 based on the GI visualization of my colon as the biopsies taken via colonoscopy were inconclusive. Over the years my diagnosis was confirmed many times but the message is that even today it is not always an easy diagnosis to make. IBDs are tricky bastards that make our lives miserable when they want too!

I would like to tell you that the diagnosis makes things better but it is really only a starting point for a long-term illness with many ups and downs. While you wait, think about what you can do to alleviate symptoms. You will have to that no matter what is finally diagnosed. I focused on figuring out my trigger foods (although with my current stricturing almost everything causes pain). Turns out bananas were one. Weird.

Also look at nutrition and supplements. While health providers don't conclusively point to stress as a trigger, I think there is ample anecdotal evidence (including my own) to indicate stress is a trigger. A day or two of a liquid diet may get you through a short episode and give some relief. It's different for all of us.

I was in pain for a couple of hours this afternoon so I am having egg drop soup for dinner
:-) Eggs seem pretty safe so I have 2 every morning for breakfast.

One last thing, keep up your spirits and enjoy life. We have to make some adjustments but with some planning we can work out just about any situation. I know well since I travel with work and do not allow my illness to tell my partner or friends "No" if invited to do something.

Cheers!

Darin
12-06-2013, 08:49 AM   #19
mccindy
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akiva, your scope results sound like mine.... I hope you get better news than I did. Mine showed normal colon and my biopsies came back normal. My GI doens't want to do a pill cam so who knows what could be going in my small intestine. I just think it's odd that my original GI back in 1995 was able to identify Crohn's visually with a colonoscopy, but now they see nothing....ugh. My sister has colitis that was identified through colonoscopy and biopsies (her GI told her her scope was the worst one he'd done, she was in agony).
We just can't seem to catch a break, can we?
12-06-2013, 02:22 PM   #20
akiva
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Will let you know when I get my letter what it says
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