Diverticulosis and Sjogren's?
Posted , 9 users are following.
Does anyone have any experience of the connection between SS and diverticulosis? I've done a bit of googling and see that diverticuli, particularly of the sigmoid colon, can be associated with connective tissue diseases.
I've had SS for 23 years (diagnosed 13 years ago) and am currently in the middle of a flare-up. The main problem this time is excessively dry eyes, causing severe pain and blurred vision in one eye. (Ophthalmologist appointment in the pipeline.) I'm also having tendon pain in arms and legs, Raynaud's and peripheral neuropathy.
Anywho, two nights ago I suddenly had a significant rectal bleed for the first time in my life. Right out of the blue, with no other symptoms. Thank goodness I was at home - I would have hated to have to explain all the blood on the floor in anyone else's house! The blood was liquid, bright red and odourless, so clearly from the bottom end of the digestive tract. It went on for about 6 hours, tailing off into bright red clots for the last couple of hours. From my experience of estimating blood loss during midwifery training 50 years ago I'd say I lost about 250ml (half a pint) before the clotting set in. (It always looks like more than it actually is.) No further bleeding since then.
I've had the beginnings of a rectal prolapse for 10 years now, but manage it. I occasionally get very slight bleeding from that, but only when it's painful. This bleeding was entirely different. And I don't have haemorrhoids - at least not the external kind.
I have an appointment with my GP for Wednesday, but am keen to do as much research as possible before then.
Obviously, this could be down to all kinds of things, some of them sinister. However, I've had no pain, change in bowel habits or weight loss (rather the opposite over the festive season!) Diverticulosis seems to be one of the possible explanations, given that I'm diagnosed as having SS.
Does anyone have any input or similar experience?
0 likes, 14 replies
Nu2this lily65668
Posted
Hi Lily,
Sorry to hear of the difficulties you are going through. Its crazy, I would've been in a state of panic but you seemed to have the right attitude in staying cool. I found your connection between the two disorders interesting. Please let me lnow the article you got this from if possible. Good luck.
Best
lily65668 Nu2this
Posted
Oh Nu2this, I didn't stay cool! I freaked out, rushed around preparing a bag to take to the hospital. Just before calling an ambulance (I live alone) I remembered my last experience of calling an ambulance for an unrelated accident at home nearly five years ago. This country (Belgium) has a fantastic health service, but my local hospital, to which the ambulance was obliged to take me, is the exception that proves the rule. It turned out on that occasion to be a filthy, third-world establishment with overflowing toilets and doctors who spoke no known language. I therefore decided to give the ambulance option a miss this time round.
On finding I didn't have enough ready cash to pay for a cab to the nearest decent hospital either, I opted to wait it out. I trained as a nur se (SRN in the old UK classification, RN equivalent in US) so knew I wouldn't bleed to death in a matter of minutes, and even in the event of malignancy a few days wouldn't make any difference. I checked my BP: 180/80(!) so clearly wasn't in clinical shock, and not worried about the 180 systolic, which was due to my fear.
When it started calming down, with clot formation, I knew the bleed was over. I went out the following day and took out sufficient funds from an ATM to cover the taxi to my preferred hospital, and I'm keeping the hospital bag packed for the immediate future. However, I feel absolutely fine. I had some painful bloating the following day (which is occasionally the norm for me anyway) together with a bit of lower abdominal discomfort and loss of appetite, but put that down to the stress of the previous night. Completely back to normal today, and no sign of bleeding.
I got the info from several sites by googling diverticulosis (and diverticulitis) and Sjogren's. We're not allowed to link to other sites on here, but you should be able to find the stuff quite easily.
maureen05275 lily65668
Posted
Hello Lily
As a fellow Sjogren's sufferer I cannot relate to your symptoms but I am writing to tell you about a friend of mine who does not have Sjogren's but has had the kind of bleeds you describe. He has had polyps removed in the past but this problem is different and is apparently due to weakened veins at a couple of places in the large intestine (not haemorrhoids he says). The bleeds are painless and come without warning. He tried dietary changes but is now to have surgery 22nd of this month, to be carried out through the anal opening. His condition is worsened as he is on blood thinners. He turned 75 last November. This is just to add to your research - good to be as informed as possible before the appointment.
Best wishes, Maureen
lily65668 maureen05275
Posted
Thanks for that info Maureen. It ties in with my own suspicions and research. I'm 73, and I know that elderly people can have vascular issues in the lower digestive tube. The description of the bleeds exactly matches mine. No pain and no warning at all. I actually thought I was about to pass gas, and was horrified at the results!
aitarg35939 lily65668
Posted
Hey Lily
That sucks! Gotta ask: you've never had endometriosis have you? It sometimes presents that way, tho it would be one for the annals if this were your 1st experience with it.
I had diverticulosis for decades. In '08 we thought I'd developed the 'itis, 4 terrible months which ended when my wonderful old gastro said, "you know, most people have the surgery after 2 flares in such a short period. You are at 4. Why are you risking your life?" I scheduled the surgery even tho I didn't believe that I had diverticulitis. (I didn't: Endometriosis Strikes Back.)
For 30 years diverticulosis was something seen by docs in exams and scans. I never had any symptom of anything, unless passing mucus really counts. It was located mostly in the 8" of colon that was removed. Don't know if it's developed in the "new" end of the colon. No symptoms.
So that's a lot of anecdotal nothing. I do not believe that my gut' s mucosal lining is as moist as it should be. I have been known to ask rheumatologists if there's a connection between SS & the intestine. When I get a blank stare I add that the gut has more mucosal lining than anything else in the human body, their eyes roll back into their heads. I do know that I no longer pass mucus really.
I hope this is just something that happened once & never shows up again.
lily65668 aitarg35939
Posted
Hey aitarg,
Yes, I'm inclined to work with the one-off theory too. I generally try not to react to stuff unless it happens more than once or goes on for more than three months. This has served me well so far. I'll still check in with my GP though. He fully understands my general resistance to medical and surgical intervention and is prepared to discuss things as between two responsible adults. I therefore respect his opinion.
Interesting point about the intestinal mucosa being a mucous membrane and therefore prone to dryness. I only pass mucus when my rectal prolapse is going through a problem period, but this is explainable by irritation at being exposed to the air.
I was certainly never diagnosed with endometriosis, but suffered severe rectal pain during menstruation for most of my reproductive life, which I suppose might be indicative of a minor case. I had a relatively early menopause (45) and it all cleared up after that.
Thanks to all for the helpful input.
christine63572 lily65668
Posted
lily65668 christine63572
Posted
Thanks Christine. That info could well be useful to SS sufferers who are on long-term steroids. I don't take them, except in an inhaler, and I only use that during periods of poor air quality. I always seem to know from my symptoms when a mass of poor-quality air is headed our way, long before it starts appearing on weather warnings!
aitarg35939 lily65668
Posted
I'm the same, only inhale steroids, but I do it on a daily basis. My skin thinned out almost overnight after a total hysterectomy at age 27 -- less than 6 months. It got much worse when I hit 60. For women who go thru normal menopause, skin thins mostly gradually from that point forward.
Diverticulosis is also so common in the general population that we try to isolate it to SS at our own risk.
estelle44124 lily65668
Posted
Sorry to hear you are really going through the mill. I have diverticulosis andcSS. I have never given a thought to whether they'd be connected. It's possible, I suppose, as dryness in areas that should be lubricated, is common.
As for the bleeding - no, even when I have had the hardest of stools, I have never had bleeding.
We SS folk seem to have a plethora of other ailments. I can currently laid up with acute sciatica, and attend the spinal surgery clinic later this month. Degenerative spinevit seems. Added to that I may have bronchiectasis and see the consultant next month.
I do hope you get some answers soon.
All the best, Estelle
lily65668 estelle44124
Posted
Hi Estelle,
I'm fine again now but keeping an eye on things. I do hope you don't turn out to have bronchiectasis.
aitarg35939 estelle44124
Posted
I'm with Lily, Estelle. I've got BX and hope you don't have it. It's not related to SS. If you don't have it, pay close attention & do everything you can to keep every cold, flu, sinus infection from turning into long drawn-out, lung-scarring lower respiratory infections.
In other words, learn from my mistakes if possible!
estelle44124 aitarg35939
Posted
Thank you for your concern. Strangely I used to lose my voice every autumn and often had bronchial colds. These days I brag that I rarely have a cold.
I do have what I call my morning cough. Had it over two years or so. Always though it was the yuck that couldn't get washed away by saliva overnight and was connected to SS.
Recently I get breathless, and an x-ray showed some scarring on my lungs. I have been referred to a respiratory consultant with bronchiectasis mentioned in the report. I am being seen on 14 th February. I certainly can do without anything more to cope with. Presently laid up with severe sciatica and a diagnosis of degenerative spine disorder.
Keep well
Estelle
aitarg35939 estelle44124
Posted
Ouch! Sciatica is no fun. I hope you recover quickly. Degenerative spinal changes also no fun, but they unfortunately come to everyone who lives long enough -- they just get some of us too early!
Coughs are funny. I've had COPD - chronic bronchitis forever ( it seems) but until I got sooooo much sicker & with the help of a friend, i never realized that i don't cough in the morning. Didn't all those years smoking unfiltereds pack a day, and not now. Neanwhile i've only had women doctors for almost 20 years and where i am, just try and get an appointment later than 1 p.m. with a woman. Thus, my doc NEVER heard me cough.
The time of day when we cough doesn't mean much in terms of BX, just the various scans. There's a good BX group here, if you need them.