Test poo for bacteria and calprotectin

Hello,

Sorry if this post is long. I just feel so frustrated and let down at the moment and needed somewhere I can air it.

I have struggled with stomach issues for 10+ years (I'm early 20's). Constipation, frequent fecal impactions, stomach pains, bloating, heart burn + acid reflux, esophagitis, etc. Over 10 years of back and forth to the doctors who all just said IBS.

A few years ago I changed doctors and the first thing she said was to do a poo sample to test for bacteria infection and fecal calprotectin (bowel inflammation test). I asked her what this was and she said it tests for inflammation in the bowls which is caused by ibd. I said that's ridiculous as I have constipation but she insisted. Normal results are between 0-50 and mine came back at 600+. I was referred to the hospital and spent 1 year on a waiting list for a colonoscopy. By the time it came around my stomach issues were feeling much better and nothing was found on the colonoscopy. As time went on I became unwell again and was sent for an emergency upper endoscopy as the acid reflux had given me esophagitis. The nurse told me that they found inflammation in my duodenum and a hernia . An appointment was made for around a month later with the consultant to discuss what's next but the day before the appointment they contacted me and said it was cancelled as the consultant was off sick. They said they would contact me to make a new one but never did. Again as time went on I began to feel a little better so regretfully I didn't chase it up. Around 8 months went by which brings us to around a month ago. I went back to the doctors as again as the constipation is much worse than usual and I had bad stomach pains and acid reflux etc. The doctor told me that the hospital has kicked me off the treatment list as I didn't turn up for the appointment which they cancelled?!?! The doctor said to test poo again for bacteria and calprotectin. Again the bacteria came back negative and the calprotectin has come back as 300. So yet again I have been re referred to the hospital for colonoscopy and upper endoscopy.

I just feel so low as I know from experience this takes a very long time of waiting (that's with an urgent referral). Which I either have to spend feeling very ill or I get better and this whole thing starts all over again. The thought of having to live the rest of my life like this really saddens me. I'm exhausted all the time to the point where it effects my day to day living. I honestly can't remember a day where I woke up and was not tired.

Im so annoyed that they have even seen the inflammation and still I get no help. Just chucked to the back of the que again because the hospital said I missed an appointment which THEY cancelled.

I'm sorry for the long post. Thanks for taking the time to read it.

Hi, thanks for your reply. Yes I'm in Wales. That waiting time was with an urgent referral from my doctor. I really hope I don't have to wait that long this time. There is a few other hospitals around an hour's drive from me. Perhaps I can get my doctor to add to the referral that I'm happy to travel if there's less of a waiting list. I have definitely learnt my lesson lol

Yes I have been referred to see a gastro. Sorry I didn't explain my situation very well as I wanted to keep the post as short as possible. I have only had relief from my stomach problems twice in over 10 years and that was only for a short period of a few months both times . Before this I struggled daily for around 8 or 9 years. I tested negative for h pylori and aslo had a blood test for celiac. I don't think it is the overall health care in Wales which is the problem I think it's just my local hospital. I have been to consultantations and they spend under 10 minutes asking questions then push you out the door to see the next patient. That is not enough time to explain over 10 years worth of symptoms I think I will phone the hospital today an explain what has happened as I was already under the care of a consultant before they kicked me of the list. Thank you for your time and advice I appreciate it.

I've got to agree about laying it on thick. Don't actually lie, but don't downplay anything either. Try to sum up the key points and symptoms. It can be hard to get doctors to take you seriously, particularly if you are a young woman. They tend to be dismissive of pain - you have to make it clear that the pain is bad enough to affect your quality of life. Incidentally I think constipation is vastly underrated as a source of misery and pain. I've had both diarrhoea and constipation for prolonged periods - I'd rather have permanent diarrhoea than constipation.

Do you take anything for the constipation/faecal impactions?

Anyway, by all means chase up your current hospital. But I would also make an appointment with your GP and ask about a referral to another hospital. Unfortunately choosing a decent one is often a matter of pot luck: you can go for a teaching hospital on the grounds that it's likely to be better funded at least. That can make a real difference as to what treatments and tests are available. But the doctors won't necessarily be any better. However, it's hard to see how you can pick anywhere that is worse than where you are now.

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Dx Crohn's in June 2000. (Yay )
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Thank you all for you replies. I really appreciate you taking the time to listen and comment on my situation. I am definitely going to make sure this time around that I get treated appropriately. As I really have had enough of feeling so ill all the time. In reply to NiceCupOfTea I 100% agree that constipation is underated. Last year I went 25 days without a bowel movement. It was the worst period of my life and I could barely walk. I went to a&e and they didn't take it seriously at all. They just gave me a box of movicol and sent me home (told me to take 10 sachets a day!!). In the end my doctor ended up alternating between giving me enimas and pyshically removing it untill as much was removed as possible. I wouldn't wish it on anyone.

User98, the type of constipation you are describing can be very dangerous. I know you mention using laxatives of various kinds & having problems with them. The severe cramping is typical if you are badly plugged up. Have you ever tried stool softners once you get things moving? Laxatives removes all of the liquid from your colon drying it out which will cause constipation. If nothing else, consider drinking some warm prune juice or eating some prunes. This is an old natural remedy. You may want to consider speaking with a pharmacist for over the counter products. I know how miserable this has been for you. I am wondering if some of your tests done previously is a result of the stool sitting there causing inflammation & perhaps even some infection.

Hopefully you can get scopes scheduled soon to get a proper diagnosis. Keep pushing for care & switch hospitals if you can be seen sooner.

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Susie
Moderator in Chronic Pain & Psoriasis Forums

Hey everyone,

I still haven't heard back from the hospital yet. I spoke to my doctor on the phone today and she pretty much said that the way I have been treated by the hospital is awful. She is annoyed that they didn't test the inflammation for Crohn's like they should have and said that they must not have bothered to read my notes. She assures me that she is fully backing me and is doing what she can to get me seen. Which I really appreciate but I can't help but feel depressed and hopeless. I can't bare the thought of having to carry on living like this. I am so tired all the time and I am constantly in pain. Getting through work and day to day life is so hard.