I know I dip in and say hello every now and then I don't now where to go with my thoughts. I already have BAM, IBS and now I've been told I have a bowel inflamation which may require another colonoscopy. I have 5 billion other problems. I was tested for crohn's some time ago (I thought I may have it -re genes) and told that I don't have it. I may have colitis or maybe I do actually have crohn's. I barely go out anymore and when I do I face all my own issues paranoia and fear. There was a time when I handled my nutrition such better but there are complexities around this. I have other health issues which conflict with each other regarding diets (I don't even really want to hear much on that front at the moment- it's too complicated) Just completely done in by it all. In chronic pain everyday with all health issues. Just tired of it all and venting - not really saying anything new.
Currently I feel I need an advocate to help me with all the things that have gone wrong in the last few years- I have been let down by so many people/services. I have pretty much lost faith in humanity....
Update - Thank you for all your respnses and are. Very much appreciated.
I wish we had a specific helpline for sufferers of these illneses.
Written by
Houseofpain
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I really feel for you, especially with multiple disorders and problems. I'm sure it must feel overwhelming. You can get through this, though. If you are in the UK have you tried contacting PALS (patient advice and liaison services)? I have no experience with them or any other particular advice to offer, unfortunately, but just wanted to let you know I hear you. ((hugs))
Thank you I did previously use PALS and may have to go back to them but it was a lot of energy and work on my part in order to recieve a glossed over half hearted apology and no real change. I'm worried it may be more detrimental to myself to fight these types of things again.
No, you didn't upset anyone here I think, we all know how debilitating/disabling/frustrating chronic bowel problems are. This is the right place for 'venting'.
I tried before and couldnt handle the pills for BAM, but there is one more thing I havent tried and has not been available/in stock for months and new doctor may not be able to get it for me.
have you tried the Colesevelam thats much kinder than the awful powders etc? I do understand I am in floods of tears today I’ve just had enough I feel unfixable and I don’t know why I keep fighting for days and nights of so much pain it’s just such a horrible situation. All I wish is to be normal 😞
I feel your pain and am very sorry to hear what is happening. I honestly believe we need a helpline for this illness. I can give you other helplines - samaritans 116123 and calm line - 0800585858 I did try colesevelam and I couldnt take it and it didnt seem to make any difference.
thank you that’s very kind of you but I find myself crying when I try and talk about it as it makes it even more real how we have to suffer and feel like a freak. All I wish is to be normal I can’t work I can’t have relationships I can’t function it’s just horrible I’ve tired everything and getting more and more lost every time something fails to help. I just don’t know what I’m fighting for I hope to be normal but I’ve been broken for so long now I can’t even remember what normal feels like. I just want it all to stop and scream it’s not fair. Thank you and I’m so sorry you feel like I do as I know how devastating and heartbreaking it is.
Do you have family to support you? What’s the new med that you are hoping to try for the BAM as I only knew of the two options?
Sorry to of said anything it’s just a horrible horrible day for me I’m just exhausted from the constant battle with my body x
I can honestly say Understand so much of what you are going through I know I a saying the opposite of how I feel but don't give up hope - please try calling a helpline - there is also Saneline and Don't Panic helpline - it helps to cry to somebody sorties - eases up the tension. I don't have any support aside fro the little professional things that have not been helpful and let me down. In an ideal world I would have an advocate fighting my corner. I am sorry you are having such a crappy day and sympathise with your feelings ( very much so).
Sorry to read of your struggles and frustrations, I am going through the same ongoing and its horrible. Life is so compromised and its such a downer. Getting medics to say or do anything constructive seems an ongoing issue. I feel for you. Keep pushing for answers and or support no matter how hard it seems.
Sorry to hear about what you are going through. I'm not sure if you are based in the UK, but the NHS mentions about health advocates and how to get one:
Sorry you are going through this. GI issues are hard on the individual, Doctors dont really know or take the patient seriously. Hope, everything gets better.
I am sorry, I don't have any practical help to suggest as I don't know 'the system' very well, but all I can do is offer you a kind hug and understand how horrible IBS (or whatever gut issue) must be on top of everything else you have to go through. All I can send is my kindest thoughts to you
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Nervous when in quiet rooms!!!
Sick and tired of being sick and tired
