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Crohn's Disease Forum » Support Forum » Undiagnosed Club » What if it isn't IBD?


10-10-2017, 02:51 PM   #1
JoeyJava
 
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Location: Sunderland, United Kingdom

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What if it isn't IBD?

Hi all...

So having every symptom but no diagnosis and tests all clear.
In my heart of hearts I believe it is an IBD. Everyone I see just sends for tests and says that because they're clear there isn't a problem, meanwhile I'm deteriorating every day.

Apparently I should be either getting a date for an MRE mid-late November. I'm not sure if that means it will take place then, or it'll just be a letter with a date for like, January. Probably the latter. I'll be hospitalised by then.

But this time round the tests I've heard mentioned seem more thorough, like examining the SI. But really, after it all no doubt comes all clear... What do I do?

The abuse I received last year in hospital was disgusting. I gradually regained lost weight and my symptoms somehow improved, but started to reverse again since discharge and a year later here we are again. Struggling on a day-to-day basis.

I can't be stuck in the same cycle of abuse again. No human being deserves that.

Coming to my own conclusion of IBD and trying to get professionals to listen to me for a change, I've done the best I can do... When I get discharged and dismissed when it comes back all clear (despite trying to convey the message that their reference values for a diagnosis apply to "otherwise healthy individuals", which I am not) what more can I possibly do?

The state I've been in throughout this torture has left my life completely devoid of any meaning or value. It's a shame, really, to see unfulfilled potential go to waste.

I'm really ready to give up. Just literally give up. I'll be sent home "tests are all clear, get on with life". But I don't have a life. This is not a life. The plan is to go to sleep and never wake up. There's nothing to wake up for.

Alarm, breakfast, teeth, TOILET, walk, shower, groceries/appointment, more food prep for dinner and next day's breakfast, dinner, TOILET AGAIN, rehydrate, hopefully have the energy to brush my teeth again, bed, repeat.

It'll change to waking up whenever during the night and day (I have a bladder problem - I'll go to the toilet a million times a day) back to bed until I dehydrate to death. What's the point of hanging on? As it is, the only reason I'm still here is to hopefully get to these procedures, but time's running out until I simply won't be able to, despite my best efforts. As I said, I'm deteriorating every day...

All I want is a diagnosis so I can at least address the problem. I could honestly tolerate everything else associated if I didn't have to spend so much time on the toilet. I can't train any more, so I have no pleasure in life. I was supposed to be running a voluntary exercise class for the elderly. I can't do that. The people that granted the funding are asking questions... I've been unlucky at every turn in my life, and each time I've managed to fight back. But with this, I'm out of my depth.

So, when I've exhausted this lifeline... When I get more "all clears"... What do I do?

Thank you for reading
10-10-2017, 03:39 PM   #2
ronroush7
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I would go for a second opinion if you don't get any clear answers. Know more than anything else that everyone on this forum supports you. You can pm me if you want. Remember you know your body better than anyone else. I am sorry for the abuse you went through. Let us know how you are.
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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.
10-10-2017, 05:18 PM   #3
Cat-a-Tonic
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I agree with Ron. You need to find a doctor who takes you seriously. I'm also undiagnosed, I also have most of the symptoms of IBD and we've ruled out most other illnesses that it could be, but all my test results have been normal or negative or inconclusive as well. Fortunately, my doctors (GI and GP) both treat me as though I have probable IBD, and they're willing to put me on milder IBD meds and I've had a good response to that (am currently on LDN, Lialda, and a low dose of prednisone which I'm gradually tapering off of). My GP even mentioned Humira to me but my GI wouldn't hear of it without a proper diagnosis. Having doctors who believe me, don't act as though I'm crazy or it's all in my head, and treat me as though I have a legitimate physical illness, that's made all the difference. I am able to at least be functional most of the time, and I've had a period of 2 years of remission which was wonderful.

Unfortunately sometimes it just takes awhile to diagnose these illnesses. I have an aunt who has had symptoms since she can remember, at least 30+ years. She just got diagnosed with Crohn's in the last few years. She said that for her, she finally developed scar tissue in her colon and that's how she finally got diagnosed. I hope it doesn't take 30 years for any of us, but so far it's taken 8 years and counting for me.
10-11-2017, 02:51 PM   #4
JoeyJava
 
Join Date: Sep 2017
Location: Sunderland, United Kingdom

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Thank you for your support, it's comforting to know I'm not alone, and I always say that nobody knows you better than yourself.

I have a fantastic GP and I know a great dietitian who listens, so I'm going to ask to be referred to her soon. I'll try living on unsweetened soya milk for a while to see what happens, but I want to really have a procedure done, and with the support of a medical professional first. I don't want to risk skewing the results of any test by changing anything dramatic beforehand...

They always want to do everything so slowly, one test, wait for results, send for another test... Surely there must be a way to request being opened up to save all this wasted time.

I'd go straight for a stoma, personally. I don't like the idea of testing all sorts of potentially awful side-effects and deteriorating to the point where surgery would be "too dangerous". Medication will always be an option, but surgery won't.

I've recently felt "blocked up", nauseated and a few times been unable to finish meals. This is unlike me, although maybe just took on too much, but part of me wants to think it could be a stricture..? Anything visible would be great...
10-12-2017, 08:43 AM   #5
badger
 
Join Date: Oct 2017
Joey, would you mind if i sent you a pm?

Your treatment by the hospital is unacceptable. But that isnt the reason for the pm.
10-13-2017, 01:58 AM   #6
JoeyJava
 
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Location: Sunderland, United Kingdom

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Of course it's not a problem
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