Leenie0811 in reply to Hamptons

Thanks for the info Hamptons, I have been thinking about seeing a dietician/nutritionist because my food options are getting really limited. Water does help me too as I constantly feel thirsty so either water or ice lollies help me out a lot when water gets boring or repetitive. I too cannot tolerate dairy or egg I found this out a long time ago before I was diagnosed but I am also a vegetarian. Sometimes I do end up having cheese but it kills me everytime so doing my best to stay away from it all now. All my GP keeps saying to me is my endo surgery will fix it but this is daily and does not get worse around my time of the month, I think they are just hopeful that is the cause rather than putting the referrals in. Thankfully they have started further investigations now but it shouldn't have taken this much of an effort to get them to refer me.

Hope you manage to get some relief with the nutritionist!

Leenie0811 in reply to Melirm

Hi Melirm, thank you for explaining more of the procedure to me. I know when I had the colonoscopy there was nothing other than the comment of a "twisty" bowel. I really hope they can find something in this next procedure because I am struggling so much with eating and pain. The doctor did a blood test for Coeliac but naturally I do avoid gluten as I found it was aggrevating my symptoms but the bloods did not show anything. Would that be an accurate test or can they do anything other than bloods to confirm? I did personally think I had something along the lines of Colitis but now I am not so sure, I really hope they can find out what it is and if it is easily treatable.

Leenie0811 in reply to RosieA

Thank you RosieA, I think the nutrition side is defo what I need to look into now once I've had the endoscopy. My journey to the endo diagnosis was similar actually I was diagnosed with IBS but when I had surgery in 2017 they said it was down to the adhesions on my bowel why I was having issues. This time it is very different, I am on prostap so in a medical menopause in preparation for surgery but before starting this treatment the digestive issues affected me all the time. Pre 2017 I was only getting them when I was due my menstrual cycle which made sense that it was endo and not something else. Sometimes I wish we didn't have to eat and could naturally sustain ourselves, mealtimes are such a problem and I love food it is depressing I cannot enjoy most things now but I will check out FODMAPs in the interim. I have done something on this previously before I went plant based but I would need to look again to check for any changes to a veggie diet x

RosieA in reply to Leenie0811

I do understand what you mean about food and I lost quite some weight until I got my issues under control. After 38 years of being a veggie I nearly caved in. I do however eat fish and I think that saved me. FODMAP is a little tricky to get into but if you go that way there are some FODMAP friendly pre-done sauces etc that are great. I found that, any alliums for me are a no no and that includes all foods with 'natural flavourings' as it usually includes onion powder. I just need a tiny amount to feel instantly sick and I swell within minutes. Recently, I find that I can't tolerate gluten. It's a pain but once I discovered my triggers I haven't looked back even if I make the 'dinner' guest from hell. x

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Leenie0811 in reply to RosieA

I feel like the awkward dinner guest already! So glad you managed to get everything under control, sometimes I do think is it worth adding something in but then I feel so bad. I now understand why some people have to incorporate some type of meat/fish etc back into their diet

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Leenie0811 in reply to steve61

Thank you Steve, it has been such a tough journey navigating through "safe" foods and documenting symptoms/keeping track of everything. I get the same as you with the chest pains this is mainly when I have been sick or having acid reflux. Glad you have no heart or cancers but wish they could do something for you! Can they not prescribe anything to reduce the inflammation? I would imagine it is hard because NSAID meds irritate the stomach lining so I wouldn't know what other options are available. Hope you aren't in too much pain today and thanks again for your reply x

Leenie0811 in reply to Aura13

Aww Aura13 I feel for you! Big hugs to you lovely, that must be awful the Rheumatologist put your symptoms down to anxiety. Is there a chance you can get a second opinion from another specialist? I am so sorry you have provided care to others in your career and aren't getting the support you need when you need it, this is super unfair! Honestly, I get your feeling of blood pressure and how your stomach is because when my pains start I have to go lay down on my side otherwise I get very dizzy and vomit. It has to be the left hand side though otherwise the inevitable happens.

I really hope you manage to find someone who can provide you with the medical support you need and if you ever need to chat to somebody you can always message me on here. Sending love and hugs xxx

Aura13 in reply to Leenie0811

Thank you dear for the kind words , I also think it's unfair and loosing hope of ever getting better or ever surviving this, and I can't believe that after being a nurse the system that I believed in has betrayed my expectations, and not only mine but to alot of us suffering.. I think it's unfair that so many suffer and in the case of autoimmune they treat alot of us as if it's all in our head. I've heard this many times from people that suffer like us. You made a good point with the dizziness because I forgot to to tell you that I also experienced it, and still do even if it's less severe and often, but in my flare ups it's really bad. I went to so many doctors and they don't see any issues even though I confront them with the results and what I know as a nurse, and it seems to me if it's not happening to them or someone they love nothing is serious. I wonder how many of us will end up in a too late situation paying the cost of their lack of empathy with our life? I know it sounds harsh, I can't believe what I go through and I can't wait believe how the healthcare system has abandoned me.. I am really hopeless.

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Leenie0811 in reply to Aura13

You know I’d have thought with your extra knowledge and being a nurse yourself that would have given you a better chance at communicating with the doctors/specialists as you’re more aware of procedures etc.

The one thing I always refer back to when I am discussing my issues with my GP or even rheumatologist is I will say about how it is impacting my quality of life. Failing that I say it’s my right to be tested/have investigations. I had to resort to this when they kept fobbing me off with endo as soon as I knew my laparoscopy was going to be in 2 years time. That’s the only reason I got the colonoscopy and now the endoscopy. It shouldn’t take that and to be bleeding from both ends/vomiting/extreme bowel changes it’s totally unfair and I feel it’s only going to get worse with our health services being stretched so much.

I’ve never put in a report but maybe it might be worth discussing that, you know your body and know you aren’t 100%, keep advocating for yourself lovely and I truly hope that you get some answers! Xxx

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