Crohn's Disease Forum » Support Forum » Undiagnosed Club » Ever felt like hitting your head repeatedly against the wall?!

01-17-2012, 02:05 PM   #1
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Join Date: Feb 2011
Location: London, United Kingdom
Ever felt like hitting your head repeatedly against the wall?!

I'm not sure if I'm posting in the right area or not. If not then I apologise. Also I apologise at the length of this!

Basically this started oooh August 2010. I was 20. I had been unhappy for some time at uni and with my weight so i started going to the gym. I got tennis elbow, my joints were unbelievably painful (I had this before..) so i went to the docs, and she gave me anti-inflammatory, non steriodal drugs (my dad later (about a year) took them for his back, and then stopped taking them as he realised how strong they were.) No-one told me what the side effects could be (at this point in life i just didn't think of reading the leaflet thinking niavely everything would be ok apparently 1% of people get crohns from this stuff)
A week later I got BAD gastritus. After recovery (about a week) my stomach was still sore, I could eat but not that well etc, some foods seemed to make it flare up. This continued, so I was told I had IBS (sometimes have not solid poo but also not runny runny-if that makes sense) so I was given all this pills for IBS, I kept going to the doctor saying this isn't working, when over Christmas 2010/11, I could only just about eat a tiny slice of turkey and a carrott.. and I was full. Like mega, couldn't walk full. That was all I ate over one day. And the doctors answer was that I should eat properly! Well how could i eat properly when I couldn't actually eat?!?
I was then given another IBS drug, because they thought it wasnt working. At this point it was February, I could barely keep anything down, and one horrific night of horrible stomach cramps and puking up at uni (by this point i was so anemic i could barely walk from my room in halls to the kitchen..) that i rang my parents to pick me up and take me home.
Doctors just gave me another IBS drug. I was also starting to get horrific right hand side pain, as well as stomach ache, not being able to eat, but then horrific vomiting where I got to the point where I was vomiting at LEAST twice a day! My weight went from 11 stone (when this started) to 8 stone! I looked horrifically ill and felt it too. My parents decided to go private and I had an endoscopy (horrific) and barium meal. No sign anything wrong. So it was here the first thing of its either crohns or collitus was said to me. Anyway, I was so horrified, I ran out of the room and swore never to go back. Stupid looking back on it..
So in the end I went back to the doctors who thought I had appendicitus. So I was wisked swiftly off for a nice stay in the local horrific hospital (I was placed next to a dying woman! Eye opening when your 20, can't sleep and in pain 24 hours the day) I stopped taking the meds the doctor had given me and low and behold the sickness stopped. Had an ultrasound and CT scan, which showed inflammation of the terminal illium. So as they didn't want to give me an MRI as I'd had enough radioactivity to last me 3 years I was told it was a negative diagnosis of crohns! Got given steriods (first lot didn't agree so changed to another lot, and put on pentasa) slowly got better and finally got off them in september. Still have mad gurgling from time to time (that hurts!,) and if i eat too much or eat the wrong things (like at christmas) I end up vomiting.
HOWEVER, in June 2011, I had also been suffering from horrific infections from the steriods - mainly thrush that slowly evolved into bactirium vaginous. Horrific. My pee started to really hurt, cloudy, sometimes has blood in it, sometimes have 'bladder farts,' Urgency and frequency, worse at night . Went to the doctor he decided to treat me for a UTI. Well this lasted for several months being treated for this UTI, until he finally realises that it might be a fistula. So i get sent off to the hospital where the consultant proposes to do a camera up the bladder test because thats what the doc said. a doc i have to say who doesnt know the first thing about crohns and has to look it up when i walk into the room! the most undignified test ever. Im going to be honest i'm still a virgin and found this a horrific (i don't actually use horrific that often, dont know why i'm so obessed with this word here!) invasion of privacy, especially as it was a he. stupid i know. Anyway, he then said there is some inflammation at the top end of the bladder, it could be a hole. Lets have an MRI scan. So I had the MRI.
Went in for a consultancy today. Only to see a completely different guy, who couldn't speak English, and his accent was so strong it was hard to tell what the hell he was saying. He had no idea WHO I was, that I had been diagnosed negatively with crohns disease, and kept going on about how it wasn't cancer (Well no-one had actually MENTIONED cancer before!)
What we did get given is a sheet of paper about my MRI. Now, its so full of complicated medical jargon god alone knows what its saying. The opinion at the end however says:
A large collection is seen superior and anterior to the bladder which is closely associated with the inflamed mid sigmoid and this may be secondary to a localised perforation.
So upon looking it up it shows that it could be in my large intestine. It might not be crohns. I don't have any problems with my bowls *touch wood* (sometimes certain foods does make me go, but as i said occasionally i got 2 times a day and it can be between runny and solid) but more often then not its solid.
So now I feel really REALLY confused and angry about all of this. I'm 21. these doctors are saying about operations when there, from this sheet of paper, obvious sign of a hole. I don't even know what the hell im suffering off. Im so frustrated. I want to get on with life! my parents are constantly worried, i'm living at home and taken a 'gap year' to get this all sorted out, but it seems to be getting worse and worse, and I'm none the wiser about what the hell i'm suffering from when they tell me its crohns disease?! Is it? Or am I being fobbed off?
Also sorry for this being so long. I need to rant.
01-17-2012, 04:27 PM   #2
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chrisnsteph1022's Avatar
Join Date: Jan 2011
Location: Tennessee

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Have you had a colonoscopy? That's the best test for diagnosis (though not all Crohn's is visible in a scope). It sounds like you've been through so much already.
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
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01-17-2012, 04:55 PM   #3
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Trysha's Avatar
Join Date: Aug 2009

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Hi Gracifer,
Sorry to hear of all the suffering you are going through and really hope you can find the right specialists to help you.
From what you have said it looks as though you do have Crohn's and it possibly could be the problem with the bladder.
Since you are somewhere in London, I would suggest that for optimal diagnosis and treatment you would be well looked after at St Mark's Hospital in London and if it was me that is where I would head for.
They are well known for expertise in this area.
Hope you will soon be properly cared for.
Hugs and best wishes
01-17-2012, 05:22 PM   #4
silverswimfish's Avatar
Join Date: Jan 2012
Location: Barrie, Ontario
Hey there Gracifer;

Your story has a very familiar ring to it for me - your s/s sound very similar to what I was experiencing when it first manifested. I know it is frustrating, but there are so many different kinds of belly problems and so many variations of each, that they are notoriously hard to pin down.

If there is one piece of advice I can give you from my experience, it's to continue to advocate for yourself and keep on with the testing and consultations; I myself got so frustrated with not being giving a definitive diagnosis at first, that I walked away from it all and pretended that it never happened - which eventually resulted in multiple surgeries and a six week stay at the hospital.

It sounds like you've been having a pretty rough go of it so far, and that sucks. Partience is a tough thing when you are miserable and in pain. Hang in there, but dont' stop until you have an answer

---> I.
01-24-2012, 11:13 AM   #5
natatak227's Avatar
Join Date: Oct 2011
Location: Fairfax County, Virginia
Sorry to hear about all of this! I would seek out a GI who knows that they are talking about. I was told for years that I had IBS and now that is not the case; so don't take that dx right away. Sometimes when they don't know how to help, they just dx with IBS because it's an easy answer. I hope you get good answers soon!
Crohn's like symptoms since 2007; Diagnosed with Crohn's February 2012

Current Meds:
Humira 40mg/week
Imuran 150mg/day
Vitamin B12
Vitamin D

Crohn's Disease Forum » Support Forum » Undiagnosed Club » Ever felt like hitting your head repeatedly against the wall?!
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