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Crohn's Disease Forum » Your Story » Hellooo (Introduction)


09-11-2017, 02:51 PM   #1
JoeyJava
 
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Hellooo (Introduction)

Hi everyone,

Out of nowhere in about May 2015 I started becoming incredibly fatigued, abdominal pains, overwhelming urge to go to the toilet, and taking increasing amounts of time to do so every day after eating, and haemorrhaging weight as a result.

Drove myself to insanity trying to think of anything that might have changed and having every test all-clear. May 2016 I finally got admitted to hospital and had an NG tube top help regain weight. I don't know what happened but from the day I was admitted everything seemed to improve...

But there was a man who had been diagnosed with Crohn's, so I pestered him about it, and we tragically bonded over sharing the same symptoms. I was released from hospital in mid August and since discharge it has all restarted exactly as it did initially, getting worse day by day. The difference this time is the year's experience of it so I haven't lost as much weight (yet) but now my body is really shutting down.

I had my calprotectin levels checked which were 49μg (50 is the threshold) but this was weeks after what I believe was a flare-up period. Incidentally lost like 9% bone density of the 2 year period, and vitamin D levels were within healthy range BY 9nm which is inexcusable considering my vitamin D intake. Finally got a gastroenterologist appointment next week and I've written down all my tests and results so I don't get pissed about again. I just want them to listen to me for a change because I get abused and mistreated for being underweight.

I've done everything I can do, so if they can't help, I officially give up.

Look forward to meeting you all!
All my love,

Joey
xxx
09-11-2017, 04:22 PM   #2
ronroush7
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Welcome, Joey. Know that you have lots of support here. Feel free to call on us. Keep fighting for yourself. Let us know how you are. You know your body better than anyone else.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
09-12-2017, 02:55 PM   #3
JoeyJava
 
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Thank you, this seems like a lovely community
09-29-2017, 02:04 PM   #4
kelly81
 
Join Date: Nov 2013
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Welcome , I'm from Sunderland too, who's your GI?
09-29-2017, 02:56 PM   #5
cmack
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Welcome Joey,

I hope you are on the right track. Give me a pm any time, I'll lend an ear.


Best wishes,

Chris
09-29-2017, 03:03 PM   #6
ronroush7
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How are you, Joey?
09-30-2017, 02:04 PM   #7
JoeyJava
 
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Oh wow, Kelly, small world
I think I must have seen the entire department at the royal last couple of years - a different person every time, so the majority of every appointment was spent explaining what had been going on.

Just restarted the entire cycle, but I think it's all going to be based at Chester-le-Street this time. Met Dr. Phil Matthews a couple of weeks ago, and surprise surprise he's now left so next review is in Feb. Another total stranger so it will be a carbon copy of this last one :/
Although, I think I've been queued up for more thorough tests so fingers crossed.

May as well put my bowel habits in the damn Echo to save time.

Is yours based at the Royal?
10-01-2017, 07:13 AM   #8
kelly81
 
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I am based at the Royal. I've had the same consultant for the last 4 years, so I guess I've been lucky. Can't imagine how frustrating it must be having to basically start over every appointment!

Last edited by kelly81; 10-01-2017 at 02:54 PM.
10-01-2017, 01:24 PM   #9
JoeyJava
 
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They didn't even share notes :/ but that's nothing compared to what happened...

I have to say, I was in hospital last year and one of the consultants on the ward round rotation seemed to be different and actually listened: Muhammad (?) Islam? He seemed to genuinely show respect. I wish I could have seen him from the start.
10-01-2017, 03:03 PM   #10
kelly81
 
Join Date: Nov 2013
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Shame you can't choose your own doctor! I've been under Dr Hobday and I have to say he's been great, takes any concerns seriously etc.
10-02-2017, 01:59 PM   #11
JoeyJava
 
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Is Hobday the one that looks a bit like Harry Potter?
10-02-2017, 04:04 PM   #12
kelly81
 
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lol never thought of that but now that you mention it he does kinda!
10-03-2017, 01:59 PM   #13
JoeyJava
 
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I remember him - he did a few ward rounds on B26 when I was in last year. He tried to stop me having a shower :S
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