I have suffered from bouts of diarrhoea for years, way before my diagnosis in 2013 with SCLE.
I have been on hydroxy for 3 years and MMF 3G a day since July. But diarrhoea started before then.
The last few weeks have got worse. Today in particular. I woke up at 1.30am for the loo and have been 6 times since. I am so sore I could cry.
I don't feel sick. I don't have a bug.
When on steroids this symptom got much better.
I have a GP appt for Monday 29th to discuss this. Had to book 5.5 weeks in advance to get appt with GP of choice. Was going to discuss this with her then. Not sure I can wait now.
Anyone got any ideas? On cause or pain relief? Or anyone had this investigated? I think it is lupus for me and maybe the meds are making it worse?!?! I'm desperate.
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Wendy39
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Hello Wendy. Am so sorry: this is ultra rough. A close lupus friend my age started myco cellcept when I did a few years ago, and had to switch to myfortic (a different chemical composition to myco cellcept) due to gradually worsening persistent diarrhoea. Myfortic suited her much better. Have you discussed this possibility yet?
You know my history of vascular ehlers danlos prolapsed strangulated piles: nightmarish. I was slow to seek more than conservative treatment and ended up with a full on haemorrhipoidectomy. Am glad you're taking yours seriously
Am sure you'll have helpful replies coming in soon..take care...please keep us posted
Thank you. I'm even unsure if I can use the haemorrhoid cream I have in the house. Not sure if it is allowed with my other meds. Might take a warm bath. It's been a 💩 week all round. Ha ha. X
😆 that's the spirit...I used to do the warm bath + curl up with a hottie thing...am so feeling for you...v wise to get use of creams etc okayed (do you have a reliable pharmacist with a private space for talking to customers?) 🍀😘
☹️ It's so difficult...we're always managing awful stuff & making compromises...and what suits 1 of us won't necessarily suit another
you were on my mind yesterday buffy: day 6 of my personal record featured 13 trips to the loo cause the day before I'd let myself eat an apple & an orange...I did this knowing it would set me off cause I need this record to demonstrate my condition & reactivity clearly to my GP & gastroenterologist 😏
Blimey you poor thing that's a lot of loo visits it's a nightmare isn't it I've not been too bad last couple of days but been taking the codeine after 2 terrible nights of waking up with diarrhoea, yesterday just had to dash to the loo once in Sainsbury's. I mentioned the omeprazole thing to the warfarin nurse because you have to say if anything is going to change . She said I don't know who you have been talking to but omeprazole will not give you diarrhoea and proceeded to say ibs comes on with age I have got it and my sister and we are in our fifties . So she decided without knowing anything I have ibs . Then when I asked her about sticky blood she said well when you had your first clot in 2008 you didn't have lupus a so they stopped the warfarin then when you had the second clot in 2011 you were diagnosed with lupus then so you have to be on it for life . I was diagnosed with lupus in 2002 , when I pointed that out to her she just said oh . Obviously knows nothing x
Am SO GLAD am forcing myself to do this log: it's making me face up to things...and my hero crohns husband too...if we just keep calm & carry on without recognition & diagnosis it's no good for anyone 😉
Buffy - I hope you told her to go and check her facts! Google just omeprazole and the second side-effect that appears in the first 2 links is diarrhoea. One of the rare side effects that shows on that page is also microscopic colitis (who has been discussing that recently?????)
Someone else was told by a doctor that MMF doesn't cause it either - what data sheets do they look at?
No I just left because I was getting annoyed I had already looked up online to see what you have mentioned about omeprazole by the time omeprazole came into the conversation she had already diagnosed me with ibs and told me I was diagnosed with lupus in 2011 which I wasn't it was 2002 . Is MMF Mycophenolate? I take myfortic which is supposedly the more gastro resistant version but Renal consultant has told me that causes diarrhoea and fatigue aswell . Just having lots of different meds must cause problems i just want something for it as omeprazole which I thought was suppose to help isn't and may actually be the cause .
My goodness, there's me moaning about 7/8 trips and you've had 13! What a pair we are! It's so unpleasant isn't it! Does all fruit have that effect? You poor thing. x
7/8 is just as wearing...anything over 3 is rough, no? 😉 Any veg or fruit does this to me other than a few dark seedless grapes & a few slices of cucumber. I can eat skinless potatoes & rice. Yes, over the decades I've increasingly gradually had to exclude certain fruit & veg from my diet (eg pears, melons, berries, onion & cabbage family etc etc), but it's gotten much more limited over the past summer.
So far just a v sore a**s & pelvic girdle...my fear is always that the piles might turn up again, but the surgeon seems to have removed so much there is nothing happening 😝
Your reaction means a lot...my crazy life of being told everything is normal until 2011 means I really really need informed others to set me straight sometimes. My crohns husband thinks I have an IBD. I think I've just been managing IBS all my life. But we'll see what the medics say 😏
If it improved with pred - might that not suggest it is due to some sort of inflamed gut disorder? Is there any food that makes it worse? A diary might be helpful.
A pharmacist can tell you what you can try that won't mix badly with your medication - but I can't see how topical creams can be a problem. Does coolth help? A plastic bag with a bit of cold water in maybe? Not too cold. Chamomile or witch hazel are often used to bathe the area (German natural medicine). They also use arnica. They use "sit baths" using chamomile tea. And quark compresses - Tesco sell quark, I'd have though most of the supermarkets do nowadays. And you need to keep the skin scrupulously clean - I know, I feel your pain, been there, done that!
Went to bed early last night better today for it....missed the mini tornado in Aberystwyth, got hit by the high winds though, laughably I was there for emergency planning....can't wait for the weekend ml
As I'm trying to fine tune my diet (I'm on a renal diet), I use baby wipes instead of toilet paper when it hits. (And since I'm super new at this, it hits A LOT). Don't know if this helps, it's a little basic, but I do hope things ease up for you soon.
I have been like that for years also , finally had enough and going to see my gp as consultant just say it's the meds . I take codeine phosphate at the moment which helps with pain and the diarrhoea. I also have been taking omeprazole for yours but others on here say that can actually cause problems which is what I want to talk to gp about . I was told that Mycophenolate causes diarrhoea by my Renal consultant but they never offer a solution. There are several posts on here already regarding these issues maybe reading those might help x
Thank you all again for your replies. Much better today. Only 4 times so far. Still sore, but improving. Role on GP appt on 29th November. Although I don't look forward to the inevitable examination. Oh joy! x
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