Hi there, I have been diagnosed with lupus for 17 years (51 years of age now) but I am currently well managed. I do however have a series of other issues which are being dealt with by different consultants, two of which are really painful and life changing. The first is interstitial cystitis which can be debilitating and the second is chronic constipation. I had the beginninga of these way back when I was eventually diagnosed with lupus but I was so ill systemically that they paled into insignificance.
Now however, both are difficult to handle. I have all the latest medication for both conditions but today had to resort to steroids to give me some relief.
I was wondering if anyone else has any of these conditions. My bowel in particular is worrying as the final portion (sigmoid) has given up so there is no motility and even with the strongest laxatives and drugs (constella and resalor) I am still not able to go. I am resorting to enemas .... I have been told by the surgeon to keep going as long as I can as the operations are difficult and not always successful but I am not sure how much longer I can continue if I am unable to go to the loo.... any advice would be greatly received
Thank you
M
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My heart goes out to you. You have two really hard complications. I don’t know how common it is, but they think I have mild dysmotility. I may have the “smart” pill to better diagnose. I take Miralax and eat small meals. You might want to check out the Mayo Clinic website in the U.S. They are at the forefront in autoimmune dysmotility. It seems like they are making some progress in treatment. Feel free to message me if I can help in any way. K
Oh thank you so much, just hearing from someone who has some experience helps. I will look up miralax and autoimmune dysmobilty and get back to you... thank you
Thank you, I will have a look at this. I am a vegetarian (for nearly 30 years)
Heaven hel0 how I would manage if I ate lots of red meat. I am scalin* back my food intake and avoiding eating heavy meals at night, in fact tend to eat more at lunch now...
I have a relative with constipation who is 86 and has had lupus diagnosis for maybe 7 years. Her constipation is assumed to relate to her pain medicine and I know she takes standard laxatives.
I once had a problem and tried everything - psyllium husk, servings of cod liver oil if I remember right. I'm not certain if "in the end" it was prunes or prune juice that saved the day, or a combination of everything. I may have bought mineral oil and not used it due the risk if you aspirate the oil.
I sometimes make fruit smoothies in a blender with fresh fruit, vanilla soy milk, and 3 tbsp of whole organic flax seeds that ground up fresh in the blender. That works. I've also made a veggie drink in the blender with carrot juice and fresh organic kale that gets ground up pretty fine in the blender and that seems to be very effective.
I don't know if eating a salad dressed only in extra virgin olive oil, raw apple cider vinegar (,with the" mother" ) fresh raw garlic and a few herbs could help.
I really feel for you, I can't believe how toxic constipation is.
Just wondering if anyone thinks that it is the chemical laxatives that have created this condition in you and in a sense you're dependent on them to the point they've stop working?
Have you ever tried drinking a strong black coffee? That can help aid in a clear out and also brown sugared warm water.
Maybe your body has become so reliant on medication that it is no longer responding. It would be worth trying more natural alternatives to see if you respond to them
My only other advice is if you try the strong coffee approach make sure you are at home, I was told about this about 15 years ago when at a friends house for dinner and I was sat on their toilet for 20 minutes after 🙈x
I've had IBS for many years but I'm rarely constipated and on the occasions I am it usually rights itself. I have a very healthy diet, lots of vegetables and fruit. I drink lots of water and herbal teas. However, for the last two weeks I've become very constipated and I'm not sure why? Is everyone saying it's the SLE or medication.? I've been on hydroxychloroquine since October 2018, 400mg a day? The only other new medication were different pain meds (very strong) given by paramedics and A&E and intravenously and by injection. That was the end of January so it can't be that. I hate being constipated because it affects how you feel generally and something new to cope with alongside pain and fatigue. I'm having hydrotherapy at the moment to help build up the muscles around my failing lower joints. Really could do without this new problem.
Hi all, thank you so much. The colonoscopy confirmed that the final portion of my bowel has thickened and therefore does not have the movement in it so I have to rely on the remaining large bowel to propel the faeces through it which I have more or less managed for 15 years but I have suddenly started to sense that the rest of the bowel is beginning to lose its elasticity too. It could well be that I have had to take laxatives but there was no option.
I have got movical and used it on many occasions however it does cause me pain as it bills everything up but I can’t move it.
Will try lepicol and see if that has any
Effect. I will also try the strong coffee, am I to assume that the caffeine is meant to stimulate the bowel?
I am also going to cut out the constella and resalor as you can become desensitised to them.
When I was first diagnosed I was on many painkillers which could have had an impact, also plaquenil then into steroids and chemo
Just having the chance to talk about this is comforting, I eventually told my husband on Monday about my fears ... he had no idea what was making me so volatile and emotional. He is doing his best to support me but I am not the best at accepting sympathy....
thank you once more, health unlocked has been my saviour in times of extreme stress and worry, nothing like fellow sufferers giving advice
This sounds like a terrible thing you are dealing with. You have my heartfelt sympathy. It may be too late for natural remedies but I would agree with all of the suggestions that others have given you about high fibre diets and fresh foods. I would add one thing to the list . . . try using a natural vinegar that still has the mother in it. The bacteria there may be missing from your gut. There are many sources for it; you can buy Braggs Apple Cider Vinegar or another brand of unpasteurized natural vinegar. It's also fairly easy to make your own. I do this, and while it does take a long time to produce your first batch, once you have it, it's easy to always have the next batch ready for consumption. It's a fun, healthful, and rewarding hobby, and there is much written about it online. Just google "mother of vinegar" and you will find lots of stuff. Best of luck you!
Hi there, I have been a vegetarian for 30 years and have for about 7 years adoptés a « little and often » eating regime. I try not to eat too much too late, avoid heavy foods, eat huge amounts of vegetables and fruit and drink lots of water however I love my earl grey tea .... interestingly I react badly to cauliflower... and avoid potatoes
i noticed that someone mentioned vinegar, I have tried that but will try again. I think the problem is that the bowel has just given up so whilst my diet will help me avoid feeling bloated, it won’t stimulate the bowel to work but I have been given inspiration to keep trying... there are so many of us affected this way.
Hi, I m autoimmune and have similar problems, couldn't go for almost 4 days wa starting to think I would need an enema, but thankfully after an awful lot of discomfort I finally went on my own, strangely after a meal of fish and chips... I think it was all down to stress and this sounds as if it could be for you. Have you tried Laxido Powders, you can ask your doctor for them, also Lactulose oral solution, comes in a bottle 50ml I have to say it took a while to work but it does soften things up. Good Luck hope it clears up soon.
Hello there - so sorry you are going through this. I totally empathise and realise you have describd what has been going on for me for quite some years. Have had constipation from my early twenties (am just 56 now) and poor old bod has been through a lot since then. I find it so embarrasing to talk about and jsut try and deal with it myself. I am on Bisacodyl via GP and rheumy has some idea but its not the top thing we talk about when I see him (I have SLE Lupus). A rheumy I had previous to my consultant referred me to the Gastric team but I never heard anything. Im very sure if I was to go through the process theyd end up giving me the same diagnosis as you... it totally makes sense as I have the same issues and deal with it the same. I have been so worried for so long what will happen when my sigmoid (never knew it was called that until you mentioned in in your post so that you!) totally gives up... I have to do the same as you and take tons of laxatives every day and drink all day and eat as healthily as I possible can to get anythign out - its so painful in the gut when it starts moving. Frankly nothing left of me today inside after taking too many last night as forgot Id taken them and took more! At least they work but yep... seems its a very tricky situ for you. I eat prunes, tons of veg, no white bread or related type pointless food, chia seeds and related, live yoghurt, phsyllium husks and all sorts... you name it! But yes, if the last bit of your colon isnt working like you say (and mine has pretty much given up and also i think prolapsed after a very bad bout of constipation after an unrelated operation about 20yrs ago and had to use suppositories - yikes!) you can take all the roughage you like, still has to get through the last part eh? Quite dangerous in the end obvs so I wish you all the best with everything and prob keep up with those laxatives eh? Loads more chats with your physicians and all that... Gentle hug x
Hi, you have captured the feelings in a nutshell. I have been telling my consultants (rheumy, endo) about this problem but they ask, has this changed recently to which I reply no, and they dismiss it as probably not cancer and just something that I have to put up with. It was only when my lovely Heamatologist was curious about my absorption that I plucked up the courage to tell him, and he referred me to gastro, and then gastro to surgical.
I feel like the laxatives aren’t working but also realise that stress doesn’t help so I try to forget about it. I have started taking a teaspoon of olive oil in the morning at someone’s recommendation on this site, hasn’t made a difference yet but I will persevere.
I am sure there is a link between the issue and the fact that I have Lupus but the focus has always been on my kidneys and heart ...
I will let you know how I get on, going to try lepicol when I can find some
Courage my friend and thank you for being so honest about it, it really helps to talk (pardon the cliche)
M
Wow! I have positive lupus bloods last anti dsdna level in June was 41 but with no major symptoms have been diagnosed with uctd and prescribed hydroxychloroquine. I have been suffering with constipation and intermittent diarrhoea for several years. In May had to be prescribed laxatives by GP after not going for five days!! An awful few days ensued with varying degrees of explosive diarrhoea and then not going again. Currently on two doses of lactulose a day but had to stop taking the advised nightly senna due to stomach pain and loose stools... Movement still intermittent and as with others sometimes feels like my system has stopped working! I had asked GP if could be related to uctd/lupus and she didn't think so, but seems may need to discuss at my next rheumatologist appointment as might be my main symptom 😣
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