rare complication bowel

I was belatedly diagnosed with pseudo bowel obstruction a rare complication of Lupus. It was just by chance when I was in the HDU after my 15th laparotomy for bowel obstruction that an intelligent doctor suggested I see a Professor who specialised in SLE who was engaged in research into SLE and bowel problems. That was 7 years ago. I am so grateful to have met this wonderful man who made the connections no one else had and who has (so far) spared me more surgery. I did in fact have pseudo bowel obstruction and am being successfully treated with Mycophenolate. I am tolerating the drug- I am unsure that I could have tolerated many more laparotomies. All the surgery and the functional bowel problem caused by Lupus mean that my bowel wont empty on its own. Again I got lucky after years of using horrible Picolax and daily enemas. Peristeen Anal Irrigation system saved my sanity and gave me back control of my bowel movement. I wonder how many others out there are undiagnosed?

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  • Well I am really interested is this topic. For years I have problems with my Bowles but never put the connection together then about 4/5 years ago I found I just never emptied my bowel without laxatives which I was very reluctant to take but my gp kept saying they won't hurt. They didn't work very well anyway. I finally went private with out tests he said it's common with women with my age and gave me so e medicine which I have taken ever since. It works and that is the main thing but I know on the days I can't take it if travelling for example I stop going. I have always thought this is conected but no one will listen. Hope other people post it is a horrible thing to have on your mind all the time and can be most uncomfortable.

    Thanks for your post. X

  • Hello Versailles and Gillyg

    It seems awful to be pleased to read that other people are suffering the same symptoms as oneself, but what you have both described makes real sense to me.

    I' m told that I probably have IBS and that it is common with SLE and to follow a high fibre diet, drink lots of water etc, but for me that makes matters worse.

    A complete change of bowel habit eight months ago took me to the GP who sent me for a colonoscopy. Thankfully nothing more awful than diverticulitis, but again was told to eat more fibre etc. The situation remains the same ie bowel only functions with use of variety of laxatives once a week.

    My GP is good but knows very little about SLE and if tests prove negative, but the problem remains he tends to look bewildered and off I go until the next crippling bout of whatever.

    I have put myself on a low FODMAP diet which in the main has sorted out the bloating and the gas, but the slow transit problem makes life very uncomfortable and difficult. Apols for being graphic but if I have a very very very small bowel movement in the morning I am a happy bunny otherwise it's misery and discomfort and worry about where and when the next loo might be.

    Thank you both for posting and if you have any other suggestions please let me know.

    Foss

  • THANK YOU versailles! this is really really useful info!

    And CONGRATS on your diagnosis....+ on having managed until it finally arrived

    typical of lupus, that you should go through all this. how often are we advised that something "isn't lupus", only to have it turn out to yes truly madly deeply BE lupus-related

    my version of GI stuff is of a lesser magnitude to yours, but i have been coping daily with it for more years than i care to remember. only since my SLE was recognised 3-4 yrs ago, have drs been taking my lower bowel stuff extra seriously. before that it was all categorised as "normal" even though it required all sorts of surgery/tests/procedures etc etc which at least meant i could decide not to actively worry about my GI and just learn to manage it ongoing....after all, my hero husband was meanwhile coping with a lifetime on steroids + major surgeries due to his crohns, which now has resulted in a permanent stricture obstructing his bowel, so i for sure know what sort of GI trouble wasn't & isn't considered "normal".....and lower bowel & rectum tumours run in my immediate family, so i monitor my GI stuff conscientiously....

    I'm on mycophenolate too - since jan, 1000mg. This has settled what we call chronic my pelvic girdle pain v effectively. So, SNAP! Long may myco work for us. I have been conscientiously doing the anti-inflammation diet & supplements thing for over 10 yrs, since my 50th BD, and this helps me manage my GI stuff up to a point. I'm integrating FODMAP into this regime now.

    again, many thanks & congrats

    PS last year the crohns & colitis newsletter had a piece on hydroxychloroquine being used for crohns...plaquenil didn't do much for me when I started 400mg daily 3+ years ago! but hydroxy's effects are, apparently, cumulative, so perhaps it's helping myco in my case.....would be interested in others' thoughts on this

  • I was diagnosed with IBS in 1994 after bad reactions to amoxicillin and tetracycline. However, after more antibiotics and surgery complications in 2000, the symptoms became more of Crohn's, colitis, diverticulitis nature. I had a private Comprehensive Diagnostic Stool Analysis (CDSA) carried out because I could not take any more invasive surgery, though I did have a lump in my colon. The results were quite frightening, showing high levels of proteins indicative of cancer or a pre-cursor to it. It also showed no growth of lactobacillus or bifido-bacteria, which no doubt the antibiotics had destroyed and without these the normal function of digestion, absorption and assimilation cannot occur. I was living on a liquid diet. It also showed a high sensitivity to yeast/fungus and I was diagnosed with a fungal infection, too, through the Bio-com system and treated with herbs and homoeopathy. In fact, I couldn't take drugs and wouldn't risk it, but have proceeded the natural way and still use the same methods - adapting my diet all the time. Not easy, but unless someone can come up with something that guarantees 100% success, I am not going to risk it. The bowel is an interesting organ with the same cells as the brain, apparently, after watching a TV programme and we carry lots of memories in the bowel. I have had experience of this and know it is true for me.

    I wonder if anyone else has experienced this.

  • I fear that i also have the same problem but i cannot face going to the GP with any more symptoms this year. This year has been by far the worst year for Lupus related hiccups and i am so depressed at the moment. It is good though that you have found and shared this information with us and next year i will get my bowel problems sorted out once and for all. Thank you for sharing.

  • Wow...I am glad someone wrote about this subject. I have had problems with my intestines for as long as I can remember. In fact, the gastro yelled at me when I had a lower endoscopy and still had something in my intestines. I replied with, I told you my intestines don't move. That s why I am here. Gave me something for 3 months, that I found sort of worked, but i found years later was taken off the market as being unsafe. ha! I now take a digestive enzyme which I believe is working, but still need a probiotic to make things go. I just bought a juicer and eating more fruits and veggies, but that does not seem to help with movement. I had no idea any of this was connected to lupus. Good luck everyone! Keep sharing helpful advice...

  • Hi, I just saw a nutritionist. (I'm from the states.) They have me trying Natural Vitality Calm Magnesium powder. naturalvitality.com/natural... I don't have major bowel issues and I don't know how it interacts with other medicine/supplement so might be best to ask a doctor. Does help things get a move on to put it delicately! Calafia

  • Hi Versailles,

    I came across your post in the endometriosis forum.

    First off is the 15th a typo? I believe you meant 5th Laporotomy either way that sounds like quite an extensive amount done. Why hadn't they done laporoscopy with you?

    Secondly my question regarding lupus, because I rule this out strickly on account that I don't have a butterfly rash on my face, is that a symptom that you have? Because I do have alot of difficulty with bowel obstruction and always summed it up to the endometriosis and ovarian cysts. I've been diagnosed 14 years ago with IBS then later with IBD but I tried their medication and it did nothing for me. I chose to just eliminate foods that caused me grief. And I use glycerin suppositories more and more frequently these days. They don't always work either.

    What age were you when they agreed to remove your ovaries. I am 50 but I also have been diagnosed with osteopenia so I don't want to jeopardize how my ovaries help to keep my bones supple, and I'm terrified of needing HRT because I am multiple chemically sensitive and don't tolerate artificial hormones at all. i have a second opinion set up for Dec. 11 after the first gyno told me he would not do surgery but instead offered me either GnRH agonists or Vissanne. I'm not interested in being a guinea pig or should I say Gyne pig haha.

  • 15 means 15. All were emergencies as my condition was life threatening. Butterfly rash is not necessarily an indication of SLE. I have never had one. In my post I stated that I was 32 when I HAD to have my remaining ovary removed. Choice about what has happened to me has not been an option. I have had very bad luck.

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