Lupus and Digestive issues

[Leenie0811]

Hello everyone,

I've been having a lot of digestive issues and wondered if anyone else had a similar experience or any advice?

So this has been going on for over a year now (maybe 18months) but in the last 4 months it has been significantly worse, every time I have a bowel movement it is extremely dark or black and goes from one end of the scale to the other with no inbetween. I also have lots of blood and clots on the tissue when wiping. I went to my GP who did some tests and asked for samples. My FIT test came back as 97 (normal range 0-9) so was sent for a colonoscopy, results came back as clear but I had a very "twisty" bowel which is usually seen in older patients.

On top of the bowel issues I have been experiencing stomach problems, it does not matter what I eat my stomach bloats with severe pain. I get extreme tenderness in my upper left/upper central area of my abdomen with nausea. The nausea can lead to vomiting which is causing me so much distress and it ranges from food coming up or pure stomach acid. I am getting to the point now where I am running out of foods to eat which don't cause me pain, nausea and vomiting. I used to have complan when I was a teen because I had issues with food (former e.d) so I have found a dairy free version of this (different brand but same thing). I am scared that the weight loss and restrictive eating will be more of an issue long term if this doesn't get addressed now. The GP has referred for a camera down my throat but what else can I do? I am really scared my e.d will relapse if they don't find the cause.

They blamed my endometriosis for so long with regards to my digestive issues, now I don't go a day without being symptomatic but I heard people with Lupus have digestive issues too so now I am so confused about what causes all these issues.

[Hamptons]

Yes, it was partly how I was diagnosed. Not as severe as yours. But have been congratulated on several pregnancies which were bloating. I am either blocked for weeks or emptying every five minutes.

No wise words other than keep highlighting it. I have now stopped dairy and that has helped and am drinking lots of water every day which has helped although permanently weeing.

I saw a nutritionist about low histamine foods and removing some foods as definitely given improvement.

Good luck

[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!

[Melirm]

Hi Leenie , I have lupus and also have diagnosed with Colitis (inflammation of the bowel) and struggle with painful bowel movements or no movement at all and coeliac disease.The reason behind mine is the immune system is attacking the lining of the bowel and this has triggered the coeliac disease.

It may well be the same or similar for you. During the endoscopies they will take tiny biopsy’s’ that will allow them to diagnose the reason behind this for you and help you to find a better diet or medication to assist. Good luck with your test and I hope they find a reason for you.

[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.

[RosieA]

I have UCTD but also suffered from endometriosis before early menopause. I had the reverse of you, when bowel problems were blamed rather than the Endo - so took several years until diagnosis and the discovery of an 11cm chocolate cyst and adhesions on the bowel. The extreme bloating is something I suffer from and had to have a colonoscopy to rule out things- it was clear. I was also checked for ovarian cancer but was clear. I went on the FODMAP diet, recommended by a Gastro consultant and it was a game changer. I kept to it really strictly and remain on it. I don't generally have bowel problems but the bloating would last for days and be quite painful. Perhaps your idea of a nutritionalist might be a good idea but I would look for one who is FODMAP trained so you ensure as many bases as you can are covered. Hope that helps a little. x

[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

[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

[steve61]

Hi Leenie, sorry to hear you having probs, I was diagnosed with Lupus in 2014 and have a few problems myself, I have stomach ache virtually 24/7 but learnt to live with it,had camera down throat just said my gut is inflamed but no cancer so that's a positive!One of my main problems chest pain, it's very uncomfortable at times, it can be all across chest, on left or right, and radiates into my shoulders which can be painful, had all tests to cancel out heart problems, the docs just scratch there heads, can be worse lying in bed at night!

Hope you get sorted and feel better soon x Steve

[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

[Aura13]

I am sorry you go through this... I also have digestive issues, always bloated, painfull after eating and soft stomach, although the pain can come and go at any time not just after eating, I also have this strange feeling in my stomach as if it's lowering my blood pressure and gives me this general feeling of unwell, I know it sounds strange but I know when I will flare up because I feel it in my stomach first. As far as doctors go, I am a nurse and stopeed working because I no longer believe in my job and healthcare. I am struggling to get doctors to diagnose me with lupus so I can start a treatment. All my symptoms check and I have a positive ANA and yet the last rheumatologist I saw said its anxiety. I am honestly lost for words. I hope you find some help.

[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.

[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

[MusicalFurbaby]

Oh Leenie, I am so sorry to hear of your extreme difficulties. I have stomach and bowel issues but not as severe, some of mine is due to endometriosis on the bowels. Fun! The oral contraceptive helps heaps with this portion of the problem. I had a colonscopy which came back normal, so my gastro figured it was nerve pain causing the rest of my discomfort. I took Endep for 12 months which cured it. Also, I’m on a low-carb diet as recommended by a nutritionist (you’ve probably already tried that), but for me I found it cured most of the constant bloating/nausea/diarrhoea. You raise a valid point about E.D. relapse; do you have a psychiatrist or mental health professional who can help you keep an eye on that side of things, and talk through any worries you may have?

[Leenie0811 in reply to MusicalFurbaby]

I have endometriosis too and my last surgery it was stuck to my bowel but hadn’t perforated the bowel (luckily) to help my endo. I’m on the prostap injection to induce the medical menopause which has been really good for my endo, I’ve had no periods for the last few months and feeling that’s helped so much.

At the moment it is just me trying to find what’s helping my body, I had a colonoscopy which came back clear but my endoscopy came back with a hiatus hernia and they want to run more tests on the biopsies as well as send me for scans on my abdomen.

I do find eating a low fibre diet helps me so much, I’ve been taking a nutritional meal drink as a smoothie with fruit to try and help too which seems to be working but I’ve not had a chat with a nutritionist or spoke with a psychiatrist. I do have a call with the rheumatology nurse on Monday so maybe they might be able to help it’s just so hard trying to find food that doesn’t put me in so much pain. I’ve never eaten breakfast due to nausea/pain so I eat my first meal at lunchtime and I can’t eat too late at night because it hurts too much so between 12pm and 8pm is when I eat and that’s usually two meals, my family say it’s not enough but they don’t feel the pain I do. It’s just getting me down now and the doctors are harder and harder to speak to for help. I feel like I’m there all the time.

[MusicalFurbaby in reply to Leenie0811]

Hi Leenie, glad the absence of periods is helping so much, same with the low fibre diet! That’s really positive that you have found a couple of things that make a difference. It gives you a little direction. Hopefully you get a little more direction, with the hernia investigations and the call with the rheumatology nurse coming up.

I totally understand what you’re saying about being at the doctor’s all the time. I often feel like I should set up a matress in the next room, coz I’ll just be there again the next day! 😜 A good doctor won’t mind the regular consults though, and they’ll be just as determined to help you feel better as you are. Is there anyone you feel comfortable chatting to about the ED stuff—doctors, friends, family? People you trust?

[Leenie0811 in reply to MusicalFurbaby]

I have to admit my GP is really good but he is hard to get in to see all the time, there is another doctor who is really nice, she's been helping me with some eye issues and really checking in on me since it started. I know the feeling of wanting to set up camp in the waiting room!

I really don't like all the waiting around but I guess that's part of the chronic illness life isn't it? Trying new things, seeing if they work, sticking with the good stuff, and praying that those tests/scans/appointments aren't too far away.

To be honest my family gets really worried about my eating because of what's happened in the past but they understand the digestive issues. I think if I told them it would totally freak them out.

My partner wasn't with me when my ED was at its worst I don't think he understands how complex it is because his favourite quote relating to my digestive issues is "if you ate proper meals you would feel much better". So he thinks home cooked food is the most efficient way to heal digestion issues and eating more often will stimulate the stomach/bowels etc. he has a very traditional/run of the mill approach to health as he never gets sick. When I started low fibre he said it would make me worse because we need fibre but when you're sensitive to it you have to go low fibre, he is also not a fan of medications. I just think because he has no experience or family in this kind of situation he cannot put himself in my shoes.

I lost a lot of friends when I got sick so I only really have one or two people I talk to but I try not to mention my illnesses unless they bring it up or I need to go home, I don't want to be known as the sick one all the time. I think talking online helps me a lot because you find other people in a similar situation as yourself a lot of the time.

[MusicalFurbaby in reply to Leenie0811]

I’m sorry you have so few supportive people you can talk to, it sucks because no one really understands what we go through. It feels so isolating. I’m glad you have a couple of friends, but I also understand the desire to not talk about illness unless you absolutely have to. No one wants the label of ‘the sick one’! Feel free to talk on here as often as you need to, as I say it’s so hard to find good support and understanding. You will always find both here.

[Moon_maiden]

Hi

I was wondering how you are now as your symptoms are similar, endometriosis, lack of eating etc. Did you get any treatment that has helped you?

I had Endo diagnosed in 2020, I haven’t eaten a proper meal since 2019, child size portions at best once a day, plus a couple of snacks maybe. GP is currently suggesting Lupus due to losing 30kg in six months back then.

Hoping you are feeling better 🙂