In need of some advice

Crohn's Disease Forum

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Apr 21, 2010
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I hope nobody minds me starting this post, I am after some advice really. I have used the boards before, well a few years ago due to stomach related problems.

Quite a while ago I started suffering severe nausea and up to 10 bowel movements a day. With this came a big amount of weight loss. I was referred to the gastro team in my area and had a barium follow through and a colonoscopy. All came back normal, all I was told was that my terminal ileum was slightly inflammed.

I was discaharged and later found I couldn't eat gluten, after going gluten free in the past few years I put the weight back on and was basically normal.

Basically on my notes they say I have IBS.

Fast forward to now, I started training for a marathon at the start of the year and everything was great, then in June time my training runs were a struggle and when I did my marathon in July I struggled from the very start, meaning I was over by 30mins of expected finish time. That same week of the marathon I started getting night sweats which lasted for about 3 weeks, I was also very fatigued, wasn't able to start exercising and have pain in my neck (all over). On top of that for the past three weeks or so I have been having loose bowel movements, which has now gone to the past few days of it just being liquid and up to 7 bowel movements. I have lost some weight, not a lot, well I don't think it is a lot, but family have commented.

So the dilema, my doctors surgery don't offer much appointments, you have to give the problem over phone and they decide if you need an appointment regardless if you would like one. I keep getting knocked back, my neck pain was due to stiff neck apparently, but it is not pain with movement it hurts to touch.

In the end I paid to see a private gp who told me my symptoms are due to new medication I started in early June, that I should stop it. I made no mention of the dirrahea, just the tiredness, headaches, pains and burning up. My arms felt like they were on fire.

My mum has crohn's and went 10 years being told it was IBS, before she ended up havin surgery. She is obviously concerned.

I am not sure what to do next, I can never speak up for myself at the doctors, they tell me everything is fine, I walk out and feel awful knowing I still have no idea what is going on.

Thanks
 
Hi Smile, Is it possible to change doctors and bring your mom along to help you speak up. I would keep a journal with food and bowel that way you have a history to show the doctor. The only way they can help us is if we learn to speak up for ourselves. I know this disease makes you want to hide it but sounds like you need some help. Not sure where you are located but sounds like you need a doctor to check you out.

Good luck!!
 
Maybe it would be worthwhile looking into getting a colonscopy done? (Or pillcam) Even if you had to go private it might set your mind at ease ^_^
 
Hi Smile

I know how difficult it is to stand up for yourself. I have trouble too sometimes.

Is there any way you can take your Mum or someone else who knows about your symptoms to the appointment with you for support, and to make sure you get some help?

I like to take a list with my symptoms, the tests i would like done, and any questions i have - just so I don't forget anything, and it seems more real when I have it written down.

It is important that you get the care that you need. These symptoms are not normal, and they are better to be sorted now than left to get worse.

Best wishes:hug:
 
Hi Smile, I would seek a new GP. and get another colonoscopy done or pill cam like the others said. A second opinion makes all the difference and if you mother has it. It might be also be genetic. It often does.

Sending you all my support, I hope you will fine some answers soon.:hug:
 
Thank you all for the replies and advice, still no let up with diarrhea at all. I called my doctors surgery on monday and spoke to a GP on the phone, wasn't offered an appointment. I was told I may have a stomach bug, to give it a week, if it is still happening then I can give a stool sample. I think it would be good to take my mum, she would definitely request testing to be done. She does get worried of one of her children suffering like she did. The issue is getting an appointment in the first place. Like I say they don't just give one out, they have to see fit that you need one. I guess that they view mine as not needing one. Plus you sometimes just get different doctors calling you back.
 
Hi, sorry to bother everyone again, I am wondering if anyone can help me. I did a calprotectin faecal test (not through my doctor) and just got the results back. It says it was positive for calprotectin and the level was about 60 microg/g and that suggests inflammation and it is not IBS. That I should go to my doctor for further tests.

Can anyone tell me what the normal levels are, can't find them anywhere (well not for microg/g). Do you think my doctor will listen to me, considering I did the test on my own accord.

Thanks
 
Smile,

What country are you in? How old are you?

Yes you should go to the doctor. If the range is the same as our they slightly raised.

You need some blood tests at least done.
 
Thanks for the reply, I am not far off my 30's and live in the uk. The results said it was significantly over the 60 microg/g.
 
I second the suggestion to try to switch doctors, to take someone with you, and to write everything down so you don't forget anything. Your Mum's Crohn's plus your symptoms and now the fecal calprotectin test seems to warrant further investigation.

This seems awful, but maybe you should exaggerate a little on the phone to get an appointment?
 
Sorry if I missed this in your posts - how long have you had the diarrhoea for? Was it that you used to have it and it only recently reoccurred, or is it long-standing? (The likelihood of doctor's suggestion of a stomach bug being a reasonable diagnosis depends on how long this has been going on for - but I wouldn't necessarily say you need to start looking for a new doctor yet).

On the NHS you're entitled to get symptoms such as you report evaluated and treated, there's no need to pay for further private treatment.

Some doctors may not react well to test results you've arranged for yourself. In my experience faecal calprotectin has been a test gastroenterologists used, but it hasn't been used that often compared to blood tests (which cover signs of infection or inflammation, vitamin deficiencies, etc.). Stool tests can detect parasites and also detect if there is any blood present in the stool. This doesn't mean you shouldn't mention that you've already got the faecal calprotectin test done - just that the GP may not want to rely on it to determine the next steps in treating you.

When you next ring, emphasise that your symptoms are getting worse, and that you really want to see a GP face-to-face.

The GP should run some basic blood and stool tests and maybe offer you some suggestions of initial treatment possibilities (anti-diarrhoea medication, etc.). Make sure you make a follow-up appointment, preferably with the same GP, to get the results.

Try to find a GP who you feel comfortable with - don't worry if you're not comfortable right away, but if you are able to find one you like, it will make the process of getting things sorted much easier. Don't worry if you need your mum to speak for you - mine often accompanies me to appointments (and I am an adult), and no doctor has ever looked down on me for it, they've even encouraged it, wanting someone with you for support is completely natural.
 

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