Another new person - awaiting tests

Hi Everyone

Please can you put this in the undiagnosed people thread if if is not supposed to be in this "intro' one?

My name is Tracey and I live in New Zealand. I have a colonoscopy and gastroscopy booked for a months time and am a bit grumpy about the whole situation!

I am here as I need to 'talk' but my poor Husband, Mum and Sister have been through so much in the last few years that I want to spare them a little. And strangely as I have been reading some posts on this site - I feel that I can be more open about the...poo..."situation" than I can with them anyway! Please tell me if there is ever TMI!

I am here because I have had issues with d and vomiting and nausea. This started about 6 weeks after my daughter was born. Initially they said, hormones / virus. 2 weeks later they did more tests and said well, prob virus, 4 weeks later they said...sinus infection - but I did have a sore throat / sinus pain etc (prob due to vomiting in hindsight) They prescribed me doxycycline (antibiotic) as I cannot have Sulfur medications and cannot have penicillin anymore. The doxycycline cleared up the sinuses and upset tummy and so I carried on as a new Mum

In the first 12 months since having my daughter I have had approx 10 rounds of doxycycline. Initially 7 days in first month, graduating to a 10 then 30 day course. Each time the 'sinus infection' came back with the d, vomiting and nausea. When I say d I mean colonoscopy prep every day

I managed to get in to see and ear, nose and throat specialist and have a scan of sinuses. They are fine, and he suspects that I am having a facial migraine - as well as whatever is causing the tummy issues.

I have had a lot of fecal tests and blood tests over the last year. My CRP has only been up once - 23 I think - about 4 weeks into this but I wonder if the doxycycline has been keeping it down since.

My fecal calprotectin was tested once but was not up - again the doxy might be affecting it?

I had a positive Fecal Occult Blood (1 of 3)

So I am a bit stumped. I have always had a dodgy tummy - low gluten diet seemed to help. I have had a colonoscopy and gastroscopy about 7 years ago that came back normal even though I was quite sick.

I can tell that my magnesium is low as I am getting migraines, restless legs and having sleep issues again. I know that I am getting run down too - fatigue, aches and pains etc

I suppose I feel the need to vent as I am terrified of being told that I have to come off the doxycycline, but that there is nothing that they can do and that it is all in my head - or IBS and that they can do nothing. I have a beautiful (very active) daughter to care for, and have just found a degree I want to study for (after I finish my current certificate)

The sad thing is that I kind of hope I do have this as I would have people that understand it and it would be 'measurable'. and there would be options for treatment - The last few diagnosis' that I have had have always been ... unmeasurable - migraine, restless legs, periphal neuropathy...

I am also sad as this has taken away from me being the best mum I can be, and has made the journey of being a new mum sooooo much more difficult.

I just want to go back to being a proper Mum.

Thanks for letting me vent.

Tracey

Sorry to hear that you are having issue especially since you are a new mom. That has to be tough. I hope that your test result in diagnosis. Come back and let us all know what happens. Good Luck!

Hello there tracey

Your post is fine here, but you can also post in the undiagnosed section if you would like to. The members there have a lot of useful advice for dealing with the doctors and making sure you get the correct testing.

My blood tests have been rather unreliable in tracking my disease, my inflammatory markers are almost always normal, even when an MRI showed inflammation in my bowel, my bloods were perfect. The only time they were raised was when I landed in hospital with an obstruction and they put me straight on IV antibiotics. So, don't be disheartened by the lack of anything in your blood test results, they are not always the most reliable source of information in these conditions.

Have they done any blood tests for deficiencies? These can be a good way to see what you gut is actually absorbing and therefore are another sign of damage if they come back low.

Let me reassure you, this is not in your head and its not IBS either. IBS does not cause blood in the stool, and to my knowledge it doesn't cause vomiting to this extent either.

I completely understand you almost wanting to have this, since then you have an answer and hopefully a good treatment plan. It took me years to get diagnosed too, so I can fully relate to just wanting something diagnosed and someone to tell you there is something wrong and you aren't crazy (which you aren't).


You can come here and vent any time you need and we will always try to answer your questions as best we can. You don't need to worry about TMI here, there's not much that shocks us lot anymore, there's also no need to be embarrassed. When I first joined here, someone said to me that I didn't need to be embarrassed by my disease, or my symptoms, because I didn't cause them, I didn't ask for this disease and I have nothing to be ashamed of. They were totally right and that's what I'm saying to you, this isn't your doing, so don't be ashamed. You sound like a wonderful mother and hopefully we can help you get back on the road to recovery.

Thankyou so much for your kind words ValleysAngel. Sniff Sniff Sob!

I have had low B12 and D and anemia in the past at varying times though my iron is OK at the moment. I will make sure the specialist dose some blood tests to check.

I suppose I had just assumed that the occult blood was a false positive, but I am definitely not imagining the vomiting (or the d)!

I also am a bit in limbo I suppose as the doxycycline seems to be keeping the v and D (not the nausea) at bay and I assume that it is not a normal road for crohns diagnosis.

As you can probably see my self confidence is low, but my chin is up now. Carry on - cause what else can you do

I should really go to bed as its after midnight!

Thanks again

Sorry to add - I have never seen blood so occult blood could have been false positive.

That can suggest an absorption problem in some cases.

I don't think I've heard of occult blood tests being false positive, but that doesnt mean it can't happen. However, if the blood isn't fresh then it might not be clearly visible anyway, so not seeing it doesn't always mean it isn't there.

I don't think there is a normal road for crohns to be honest, it is such an individual disease that what the doctors call 'normal' is often not what happens for the majority of us.

Remember, it isn't in your head and it isn't your fault!

Hi Tracey.

I want to send you my support and best wished. I hope you get some answers so you can start feeling better soon.

Thankyou for all your support. Having a blah day today - we have had 2 months of rain with only about 2 days of sun. Today it is just grey and about to rain. Ugh.
On a more positive note I figured out what my avatar picture thing should be. Not sure if anyone else will find it funny as I have a weird sense of humour!

Maybe I will take my little one to the supermarket and we can get some more lovely migraine inducing gluten for my 'eating of gluten before colonoscopy' and some food for dinner.

I hope that some of you are having a nice sunny day somewhere?
I think I shall go and light the fire.