Dealing with a longterm undiagnosed illness

hacked

I feel a little like screaming, as I'm sure anyone who's been ill long term can relate to!

I got pregnant with my daughter the summer of 2009, and since then I've had health HELL. I Was severely ill during my pregnancy, lots of pain, going in and out of labour preterm for the final trimester...no diagnosis. They had thought it might be my kidneys, and when it wasn't they decided to just ignore the problem and explain it away as random pregnancy pain.

That would be all well and fine, but the birth of my daughter came and went, and the pain didn't. I spent a whole yer seriously ill. I had to leave college because I could no longer cope. My GP was useless and sometimes I was getting an ambulance into A&E in agony and vommiting up to 3 or 4 times a week. The hospital was useless, they knew my name and case history off by heart and every single time they gave me some pain meds that did nothing for me and sent me for xrays....for months.

The last time I went into A&E they rolled their eyes and sent me on my way. And as I was going out the door a surgeon ran up to me and told me my blood work had come back critical and I would be need to be admitted. You would think they would check that before telling you you can leave :rolleyes:

I had gallbladder disease. Because it had gone untreated/undiagnosed for so long it was spreading to my pancreas. I was in hospital for a few weeks...lots of meds and morphine. Then I was sent home to await surgery. I had the surgery, got sick after the surgery and was hospitilised again.

After recovering from that I felt ok, but unfortunately it hasn't been the end. My digestive system wasnt great before, but since the surgery in may my digestive system seems to have just stopped. I eat healthily...much lower fat, lots of fiber, I drink water. I'm doing everything right, but no luck. I had thought it was just related to the surgery but in the last month I have got so much worse!

I have so many symptoms, I am at the doctors almost every week. I'm anaemic, I'm fatigued, I'm insatiably hungry I eat non stop and I seem to just be getting skinnier! As time goes on it seems that the gallbladder was a symptom and not the root cause. I am now thinking that it might be more of an allergy/malabsorption problem. I accidently stumbled on to the coeliac ireland page and it describes everything I've been feeling for a lot longer than I thought.

I am not looking for medical advice, don't get me wrong. My faith in doctors has just been seriously crushed after the hospital refused to listen to me for 8 months and in the end it turned out I was right the whole time. I want to work with my doctor on this and not just follow blindly. It's just so discouraging when your whole life is being put on hold!

Has anyone been in a similar situation? How did you deal with working with your doctor towards diagnosis?

Northern Monkey

Have you had any checks done for IBS, colitis or crohn's?

hacked

The doctor seemed to be wondering about IBS and asked me a lot of questions, but IBS doesn't properly fit.

I had blood work done 2 weeks ago that did a general check for things like kidneys, liver, diabetes, thyroid etc. I'm not sure if things like colitis or chrons were checked for, I don't think so. Those are the kinds of things I'm planning to go and ask about tomorrow though.

CathyMoran

Best wishes to you. It is very hard to get a diagnosis sometimes. I only got diagnosed with pernicious anemia a few months ago even though I had obvious symptoms of it during my pregnancies. Do not give up until they give you a diagnosis.

cltt97

Poor you, you've been through a lot really! I would ask for a referral to a gastroenterologist, with a view to get a colonoscopy and a enteroscopy to check for coeliac, crohn's and ulcerative colitis. I would also ask for lactose intolerance testing. With all the symptoms you're having, there must be something wrong with your digestive system, and the only proper way to check that out is to send a camera down each end.... I myself am going for an endoscopy next week to once and for all rule in or rule out coeliac disease....
In the meantime you could start a food diary to see if you see any correlation between certain foods and your ailments. And then try and leave certain foods out for a while and see if it makes any difference. If you suspect coeliac disease you need to avoid all foods containing wheat, barley, rye or oats. And you need to start reading labels, as gluten, the offending protein, is often hidden in ingredients, for example a lot of cheese flavoured snacks have wheat/gluten in the cheese flavour, and wheat is a general thickener, so sauces usually have it in them or sausages and burgers have crumbs as fillers....
There is a good book I can recommend that might be worth reading.
Hope you get well soon!

hacked

Thanks for the response! I think I have noticed a correlation between eating and feeling worse. In the last number of weeks symptoms have all drastically worsened. I was at the doctors on thursday and even since then things have got worse. I am constantly feeling like im starving (andthats no exxageration) even though i might eat four meals plus snacks a day.

I think I'll make an appointment with the doctor tomorrow and bring a print out of some of the things Ive found as it's a new GP im seeing and they don't know me very well.

Runaway34

Oh I actually know what your going through I was the same for years. Suffering from severe pain in the stomach and vomiting and loose bowle movements constantly. The stomach pain was the worst it felt like someone was blowing up a balloon inside my stomach. A and E nearly also knew me by name and I would tell triage exactly what meds I needed to get me through the pain then everything woul be fine for a month or so and start again. Doctors kept putting it down to stomach ulcers then eventually one day a doctor decided to take things further and referred me to the gasto team, turned out I suffer from Chrons. Although still newly diagnosed and trial and error with meds I am slowly but surely starting to regain my life! Ask for tests on Chrons as it it very hard to diagnose but be prepared for invasive testing!! Best of luck and keep us posted

hacked

Thanks for the replies! As for an update, it's obvious that I'm suffering from some sort of malabsorption disorder. I Was in hospital a week and half ago for bloods and am being tested for coeliac disease. Results should be back this week.

Really hoping its coeliac as if not, it could be something more sinister.

Runaway34

Hopefully you get the results soon so ! What hospital are you attending?

hacked

Thanks Runaway! I had the blood tests done in Vincents as there was no waiting list.

After results comes the endoscopy. I've been told I could be waiting up to 6 months for this if I go publicly. Does anyone know how much it costs private? I really don't feel like I have time to wait 6 more months!

Heather21

Hacked, I just stumbled across your post. I too am feeling similar and don't know where I can get help. I'm really at my wits end and feel I am a burden to my husband and family. Hopefully together, we'll get some answers. I just posted on boards today under nutrition - Leaky Gut. I have had colonscopys, endoscopies and still no answers. I had allergy testing done, which showed up a casein allergy (animal milk protein). I used to be a size 14-16 and weighed over 10stone. Now I am down to under 8stone and a size 8. I look horribly skinny and feel totally exhausted, foggy brain sometimes, recurring thrush, hypersensitive to certain foods and can't even have a drink anymore, that I get panic attacks. Are you similar? I've googled and googled and come up with Leaky Gut Syndrome? I just want an answer and a cure. I'm sure your the same. Doctors just keeping telling me that I'm depressed.

Heather21

Hacked, just reading over my message and I sound so me me. Sorry!! I just couldn't believe when I read your post that we sound so alike. I'm sorry that your feeling so horrible. Its not fair, is it? Hopefully you'll just turn out to be a coeliac. I know a coeliac and she finds the diet easy enough to manage. Have you looked at Leaky Gut Syndrome?