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Crohn's Disease Forum » Your Story » Newbie to the forum - Currently undiagnosed :(


02-12-2014, 03:35 PM   #1
RosannaKate
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Newbie to the forum - Currently undiagnosed :(

About me,
I started getting symptoms 2 years ago when I was 15. Constant never ending trips to the bathroom, the pains you get all through your stomach that can't be controlled no matter what pain killers you take, bleeding, sickness ect ect... I have been through multiple tests, so far to no avail. Colonoscopy's, endoscopy's, CT scans, MRI scans, blood tests... I feel like I am going out of my mind. I don't get a day off from my symptoms, I just want to feel like normal for one day! Except I guess this is normal now for me.
I have a Video Capsule Endoscopy booked for the 25th of this month and I feel like it couldn't come sooner! I had one booked for last week but after spending all night throwing up the laxative they gave me to take, I couldn't manage an hour and a half car ride in pain with extreme symptoms so have had to reschedule. I hope this comes back with a result as I am being left in the dark with nothing to halt or steady the symptoms.

I have had such a tough time since the symptoms began, lost all my friends, my family sit round moaning that I'm only "feeling sorry for myself" and the boyfriend had to be talked round after constant arguments because I couldn't leave my house, being told I was "just lazy" everyday killed me inside!

In the last 3 weeks I have massively deteriorated, I have gotten to the point where I am passing out at least twice a day, throwing up daily and not being able to leave my bathroom for fear of the worst. The doctors have done nothing but a blood test after going to the surgery 9 times in 2 weeks. I have massive anxiety after the last 2 years of being forced to go to school and spend the day in their toilets with other girls taking the mick out of me because I had to do more than a wee at school! I have only just in the 2 days been prescribed anti anxiety tablets, which haven't had much affect yet, but I'm hoping will soon.

I'm missing a lot of time at work, I'm scared of losing my job now... but I can't physically get the bus there, I wouldn't make it without a toilet! Not only that but when I'm there I can't spend all day in the loo! It's getting to the point where I can't live my life at the moment, and that's horrible after 2 years. I can't move from the pain most of the time. I'm constantly drained and shattered, I have no energy left and I'm struggling to hold any food down now. I'm living off bread sticks right now and even those are hard to keep down.

Living with a constant condition like this is so hard, and reading your forums I'm so glad I have found this site because many of you have had similar things to me. The advice I have been reading on here is amazing and I will try anything if it gives me a chance of a better, more functional life!

Best wishes to you all with everything each individual is going through.

Thanks, Rose
02-12-2014, 04:28 PM   #2
FrozenGirl
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Welcome!
I'm sorry your parents/boyfriend is so unsupportive. If you are passing out that often with vomiting I would really recommend going to the emergency room, no matter what it takes to get there. You are very likely dehydrated. They might not be able to diagnose crohns but they can hopefully get you stabilized. This forums is great, lots of really supportive people with great advice.

Best wishes,
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
02-12-2014, 04:57 PM   #3
pink&green
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Hello Rose and sorry you are feeling bad. You definitely came to the right place there is lot's of support and advice on here. I agree with FrozenGirl if you are feeling that bad go to the ER.
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Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

LeeLee
02-12-2014, 05:03 PM   #4
RosannaKate
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Thanks both, I seem to get no avail whatever I do. I just end up being on a drip for a couple of days and then being discharged and going in the same vicious cycle. GP's will do nothing until I have had a capsule endoscopy and everyone else is just sending me home after a day or two after i've been kept on a drip for hydration until they are satisfied I'm stable enough to go home, until the next time!
Thanks again
02-12-2014, 10:55 PM   #5
badbelly
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Yikes. Just wanted to say welcome and I really hope you can get a diagnosis soon! I had a similar experience with a ton of crazy tests in the hospital and they never did get me a diagnosis until years later after another flare up. It's so weird they can't find it sometimes for a diagnosis.

Hope you feel better soon and they find out what's wrong w/ you!
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Crohn's diagnosis Jan '13.
Current meds: Humira, Modafinil, pain meds as needed
Supps: VSL#3, multivit., d3, omega3, iron, b12
Past meds: LDN, cipro/flagyl, prednisone, pentasa
03-21-2014, 06:48 PM   #6
Stevi (:
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Hey Rose if you would like someone to vent to on a more personal manner let me know im willing to hear you out i havent been doing so hot myself and am experiencing the mental disadvantages of being sick for longer than you should..... so itd help me too
03-25-2014, 03:50 PM   #7
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Welcome, you will find a diagnosis sooner rather than later. Just stay strong.
03-25-2014, 06:11 PM   #8
Orchid
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Hope today's capsule endoscopy was informative!
03-29-2014, 01:03 PM   #9
Stevi (:
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Please let us knowwww!
03-29-2014, 08:08 PM   #10
Allison M
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Hang in there. Took me 4 years and 3 operations to get diagnosed. I know that faker, lazy look. Heck I had a ct scan that said pancolitis, and my GI said it couldn't be right! You know when you are sick. Keep trying, and best wishes to you.
03-30-2014, 12:11 AM   #11
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Hi Rose! I hope they diagnose you quickly and get you some medication that will help! Let us know what they say ~ in the meantime GOOD LUCK, STAY STRONG & TAKE CARE OF YOURSELF! Jenn
04-01-2014, 09:10 AM   #12
RosannaKate
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Thanks everyone!
04-18-2014, 12:31 PM   #13
Stevi (:
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Get those endoscopy results back yet?
04-19-2014, 03:31 AM   #14
RosannaKate
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Nope, wont get them until my july appointment -_-
04-19-2014, 07:12 AM   #15
chuckmya
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I guess I don't realize how lucky I am! I don't know if it's because I have an extremely high pain threshold but I don't seem to have as much daily pain as most ppl on here. But with that aside I know my body and know that something is wrong! For me D is not my major symptom.... Rather it's C! And has been my whole life! I sometimes welcome short bouts of D as it gives me relief In a Different sense. That feeling of extreme fullness/cramping temporarily goes away! But I've had 20 plus years of a bunch of different symptoms and 5 surgeries! I am looking forward to meeting my new GI doc @ mass general hospitals crohns and colitis center this coming Tuesday! All of my records/tests/pathology reports CT scans colonoscopy results have been sent ahead for review! Hopefully moving ahead to a diagnosis so I may finally begin my healing journey! Just cannot even think about going thru another surgery!!! Wish me luck!!! Thanks everyone!!
04-20-2014, 12:01 AM   #16
Stevi (:
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Rosanna you gotta push for something closer...call them every week if you have to
its what Ive been doing... and it does work sometimes.
04-20-2014, 04:08 AM   #17
RosannaKate
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I have phoned every other day, unless my doctor will send another refferal as urgent they wont move it. Hes said hes done everything he can... so its not going to help at all unfortunately
04-20-2014, 02:45 PM   #18
Stevi (:
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:/ I have no appointments scheduled right now. No ones calling me back and I call them atleast twice a week. Im about to just do everything a normie would do and go to the hospital and make them do work. Im tired of feeling like this. Either that or Im going to get my doctor to refer me to every G.I around here and whoever pokes first Im gonna see... Im not even sure if either are a bright idea but im tored of no progress.
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