Need some help

I'm at my wits end at the moment and feel that my doctor is being less than supportive. I've been having diarrhea for over a year. In the past 3 months I've been having it everyday, it's very bright yellow, painful and on occassion it has had some bright blood in it. I get lower abdomen pain and cramps, nausea and acid reflux. I'm also very tired and no matter what time I go bed it's never enough sleep. I've been tested for celiac disease and it's not that as well as for infections. My doctor did say that from a stool sample my ESR levels were slightly elevated. I've since had blood tests and all normal. I'm starting to have attacks more each day and now it's effecting my attendance at work. My doc said it may or may not be the onset of Crohn's and said there's nothing he can do for me and there is no specific test to diagnose. He prescribed 30mg of codeine 3 times a day to help with the diarrhea but I find it doesn't really have an effect and I don't want to be taking addictive painkillers long term. Where do I go from here? My doctor doesn't seem to be too bothered and I've had to push for tests and now I feel that I've hit a brick wall. Any advice would be great as I feel so alone and down

22 Replies

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  • Not surprised you're at your wits' end with a doctor like that. You must insist on a referral to a colorectal consultant who will run all the necessary tests,

    e.g. colonoscopy, proctogram etc. If possible, go privately for the first consultation (costs vary from £150 - £200) even if you have to revert to the NHS for the procedures, at least it'll give you a kick start.

    As long as the blood you're passing is clear, bright red it's usually nothing too serious and, since you have diarrhoea so badly, is probably caused by an anal fissure or haemorrhoids.

    Have you tried any food-elimination programmes such as the low-FODMAP diet which many of us on here have had great success with?

    Rosie

  • Thanks for the reply. I'm back at the doctors on Monday as I have had to come home from work as I haven't been too well and I will see what he says. Failing that I may just take your advice and go private, I just can't live like this anymore

    Never heard of the low-FODMAP diet but I will take a look on google now. Thanks again

  • Here's the correct link for FODMAPs:

    med.monash.edu.au/cecs/gast...

    This is Monash Uni where the diet was developed and there's a brilliant app available on there. It's best not to bother with other websites on the subject as they usually get it all wrong. A good book on how to do do the diet is 'IBS-Free At Last' by Patsy Catsos who is Monash-trained.

    NHS dietitians are trained to advise on it if you need help.

    You could try eliminating the usual, main suspects from your diet to get you started, these being: wheat, barley, rye, lactose, the onion family, stone fruit , apples and pears.

    Rosie

  • Fully agree on the colonoscopy. In Canada I had to push hard for it, I was low on the wait list because my GP didn't understand the severity of it. But the sooner you can get to a gastroenterologist the better. They understand it. I'd also suggest starting a food diary. Everything you eat and all symptoms. You can phone aps for that purpose. You can start looking for patterns of food and reactions. And you can show your doctor. Eventually you may want to try FODMAPS as Rosie suggested, that's the elimination diet that really helped a lot of us.

  • Rosie. Do you take meds as well as fodmaps ?

  • FODMAPs works really well for me (95% control) and I've never needed to take any supporting meds.

    However, as it would be nice not to be so restricted with food, I'm currently trying out a medication suggested by someone on this forum and am just beginning to reintroduce high FODs into my diet alongside it to see if it works for me as well as it obviously does for her. So far, so good!

    Rosie

  • what med Rosie - I find not eating out is leaving me with no social life

  • Go to the 'Find members' button and look up Shon48 who made the original post about this. The medication is called Phenergan.

  • Do not worry, with NHS its quite normal to wait. Meanwhile you should have some other tests as Rosie218 has suggested at some private clinics.

    You can go through my story, in case it can help you:

    healthunlocked.com/theibsne...

    If you have issues of acid reflux, you can try fennel seed powder. I take 1 tbsp with some water after every meal, 3 times a day. Fennel seeds provide cooling effects to body. You can google out about fennel powder helping in acid reflux and indigestion.

    Hope it helps!

    "Where there is a will, there is a way"

  • Hi thanks for the advice. I'm prepared to wait, that isn't the issue. It's rather that my doctor has dismissed me and just prescribed me codeine and doesn't seem interested. Will definitely look up the fennel powder.

  • GET A NEW DR!

  • My advice too!!!!!!!!!

    Get a new doctor asap. This is for the long haul to get you sorted. Your doctor is rubbish. Seriously consider not taking the codein , seek other medical advice.

    The NHS will help you if you persist. You need to eliminate any possibility of a more worrying underlying cause. ..... but they can be treated too so panic not ! We can all relate to your symptoms and many of us have been helped by the low fodmap diet.

    alittlebityummy blog is excellent and really easy to understand . It is proof read by a dietician and is based on sound scientific research. It is written by a young woman determined to inform fellow sufferers in an accurate and scientific manner. Highly recommend as easy to understand. Just keep reading and reading about the low fodmap diet. It seems a maze at first but it will come clear. Take time to study it carefully before you start it.

    What do you eat normally?

    What do you drink ?

    Start by cutting down on caffeine and alcohol

    Joy

  • A small point, try avoiding fried food, it could be part of the problem.

  • Yes too much fat is a problem for many with IBS . Joy

  • Codeine will help to bung you up, but that is not the answer! Please do change your doctor or get a 2nd opinion. Twelve months is far too long to be suffering in this way. I'm sure an hospital investigation is the best thing. Take someone with you when you next visit the doctor (someone who can also point out the distress you're in). Best wishes from Ann x.

  • It's not right that you should have had diarrhorea for so long without having a gastroscopy and an endoscopy - having blood is totally wrong

    Insist that you are sent for these tests and if your doctor won't send you to the hospital for these tests get a second opinion

  • Hi Shell , Try stopping the codeine. My doctor has changed my usual pain killer,s for paracetamol and codeine as they are stronger while I am waiting for a knee injection. I started them Tuesday and have had terrible pains and Diarrhea .the food I was eating ,I know I can eat without problems so I have stopped the codeine .yesterday I was ok .today we are going out for a meal for my daughter,s 50 birthday just hope I am ok ,it is such a worry eating out .

  • Try the fob diet it I'd very limited but will give you some answers. You have the same problems I had. To the t. I got a new doctor she asked me to try the fob diet turns out I have ibs and gluteen allergy. I feel 100 persent better I've been on the fob diet for 5 months all my swelling is gone my pain is gone if I don't eat gluten or dairy or high frotous corn syrup. I love my new doctor. I am 50 years old and had these problems for 49 and a half years. Good luck.

  • Change you GP or move to a different Practice. Get an urgent referral to a Cons Gastrenterologist. Your GP can refer you for a Colonoscopy & have this within 6 to 8 weeks if you live in the UK that is. I'm afraid you have to be pushy & once referred for anything (having worked in the NHS for 33 years in then North West) I do know how Apts & referrals are made. As I read the replies below they seem similar. My stool sample came back showing inflammation & Calprotectin levels were 400 when they should be 50, that's when my GP referred me for the Colonoscopy. Have you at least had this test. My GP was a trainee & I find the 'younger' GP's have the latest knowledge although they all have regular training too.

    You should NOT HAVE TO SUFFER LIKE THIS.

    Take care & good luck.

  • Is would definitely not take codeine as it is not a long term medication as it is addictive. I use Imodium when I have a flare up which is not often now as I am on low FODMAPS.

  • I totally feel for you, you need to go to a different doctor and get referred for a colonoscopy to see what's going on-Please push for this 😒

  • I have suffered for years with very similar symptoms. Was tested for everything and diagnosed with IBS. I was so poorly this year I gave up work and told my doctor I felt I was slowly wasting away.. I started to follow Fodmap, and once I stopped wheat my body started to heal for the first time in years. Three months on I was better than I have been for years. Had a GI appt, he said with such a dramatic response to giving up wheat he wants to do an endoscopy for celiac as a lot of blood tests come back negative. The downside is I have to go back on wheat. I week in (only having a slice of bread or a couple biscuits a day) and I can feel my old symptoms coming back. Even if my,celiac test comes back negative, I will always avoid wheat as I know that my body doesn't like it.

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