Diagnosed about 5 years ago with sjogrens. Started with severe pain in my right side under my ribs. Two weeks in hospital. Three X-rays. Two ct scans and many untrasounds. My gall bladder was found to have 0% function so we got rid of it. Never had my doctor seen a gall bladder with no function at all. Pain subsided so though all was good. I've always had digestion issues. Self diagnosed IBS. Now the pain has returned. Only this time on my left side. Feels like a constant runners cramp. X-rays showed I was full of stool. Trying my best to get rid of it but still don't seem to have a solid poop. Dry eyes and dry mouth are just my "normal" that I have learned to live with. But this pain and digestion issues are taking over my life!! Guess I need to get on board with a specialist sooner rather than later. Thanks for reading. Just looking to see if anyone has similar symptoms!?
So sorry you have this horrible presentation as part of your Sjögren's too. No remedies for me either. I too had a dysfunctional gallbladder removed a few years ago but the IBS-c (also self diagnosed) has just got steadily worse and I have to juggle my life around this and the chronic fatigue now.
I don't know whether or not you also have a neurological presentation of Sjögren's as I do - but I think in my case it's dysmotility as part of the inflammatory process. It's quite a common aspect of Sjögren's I believe - this autonomic dysfunction. You could try looking up Sjögren's related gastroparesis and ganglionopathy.
Someone tried to tell me, after I posted about this on a FB community, that this couldn't "just" be Sjögren's related and must be Coeliacs or B12 deficiency but, from everything I've read on line now, she was talking errant nonsense! We may also have gluten intolerance or pancreatitis or kidney disease related or unrelated to Sjögren's - but many do have significant digestive problems as part of this disease - even as the main or only symptom.
I'm on high dose of Cellcept but it hasn't helped this problem too much I suspect - although my rheumatogist and neurologist are both hoping that it will given time.
Did your doctor recommend anything for your current bowel problem?
The combination of runny stools and a loaded colon suggests that you might be suffering from spurious diarrhoea - sometimes referred to as false or overflow diarrhoea. This is when your stools have become impacted due to constipation and can no longer be moved through the bowel, leading to liquid matter entering the colon from the small intestine being forced past the blockage under high pressure. This can cause severe abdominal pain, and is also not an ideal situation because you're retaining toxic materials in your bowel.
It's usually best not to play around with OTC laxatives if you have this extreme kind of constipation, but to seek medical advice. The worst-case scenario is that too-high doses of the wrong kind of laxative could cause bowel perforation.
I can't share anything personally as to the connection with Sjogren's syndrome, since my SS presents with different symptoms. As I'm sure you're aware, it's a diverse, and often devious, disease that manifests in many different ways. However, regardless of the cause of the constipation (which may well be neurogenic, as tumtum says) I really think your doctor should be involved in clearing it initially. Then you can go on to investigate the cause.
Yes sorry I sent my comment without saying what Lily has said - it's important to get this problem fully checked out and rule out IBD including Coeliac, Crohns and UC before assuming Sjögren's is directly responsible for this horrid symptom so please seek good medical input if you haven't already.
I, too, had a zero-function gallbladder, which my idiot gastroenterologist had ignored as it came on over the years. I had been diagnosed w/SS about 10 years earlier but had no clue that my symptoms were anything other than heartburn-chronic disrrhea. Nope, dying gallbladder which was quite symptomatic for 5 or 6 years as it died.
Between having my gallbladder being removed & then 4 years later losing an 8"section of colon because, yes, indeedy, endometriosis can come back 27 years after a total hysterectomy, I work hard to keep everything soft. The surgeon on both those removals hounded into me that I have to keep things soft. It's been easier after the surgeries, so this is no help to you.
But this I know: anti-vomiting/nausea drugs and many Rx pain meds cause monster constipation. I'd sort of forgotten but for a reminder this week after ER visit for pinched nerve from spine down my leg. A dose or 2 of morphine and some zofran/ondansetron to prevent morphine-induced vomiting, plus some other IV meds, was enough to stop everything. Not until Wednesday did I realize ... just getting back to normal after using all my gut meds & oats.
You do have to get this taken care of by a good doc soon, the immediate problem and a future plan. As it is right now if you're impacted, your bowel could perf even without OTC meds. That is no fun, nor is the surgery to save you.
Oh Boy! I am so sorry you have to deal with this mess, as I also have digestive issues as well!! My doctor knows it has to do with my SS, as it is affecting my organs, and my digestive system, it is most unpleasent!!! I am constantly boated, constipated, and used to take over the counter things to help, some would help a little for maybe a week or even two, then stop. I finally had to go to a Gastroenterologist, they ran test after test, and I had enflamed intestines, and stomach. I too get pain under my right breast area as well as the center of my chest along with the boat, and I have a "disfunctional" gallbladder, also due to the SS. It also affects my liver, and adrenal glands and kidneys, which made my blood pressure go totally crazy!!! Took my Urologist almost a year
oops, somethting went crazy with my computer...anyway, took my Urologist almost a year to get me back on track, as I was in kidney failure. I seem to be ok now with the right meds. I am on the right meds now for the intestines...thanks to my Gastro guy, but that I am afraid will always be a work in progress, as even with the meds, it's not great, but better. My best advice is to keep in constant touch with your doctors, and make sure they keep in contact with each other, and work together to control your SS. I am very lucky as all my specialists, all communicate with each other, not everyone is so lucky! They have to stay on top of things!!
I sure hope things get better for you!! For some this is not much to deal with, but for others it is a real bummer!! The best thing is to find really good doctors/specialist for each thing tht is affected, but a really good Rheumy that knows SS!!! Gets you on the right meds/prescriptions. I wish you the best of luck!!!! Please keep us posted as to how things are going! We are here for you any time you need, or want t talk!!! Blessings!! XO
Just another thought to add to my previous post. You have been tested for thyroid function, haven't you? Sjogren's - like many other autoimmune conditions - frequently attacks the thyroid gland. One of the main symptoms of an under-active thyroid is constipation.
I started getting severe constipation, sometimes escalating to attacks of intestinal obstruction, around the time of getting my SS diagnosis, which was 10 years after my first SS symptoms started. As I was also experiencing hair loss and general tiredness, I repeatedly asked my doctor about my thyroid. My symptoms got steadily worse over the next few years. I was getting yearly blood tests for thyroid hormone levels (which is normal in my country) and I could see that my TSH levels were rising rapidly year-on-year, while my T4 was falling slowly. However, because my T4 levels, though lowish, never went off the bottom of the range, my doctor kept telling me that my TSH levels, which were way off the top of the scale, didn't matter.
Six years later, when my heavy eyebrows had long since disappeared, along with about half my hair, and the constipation was very severe, I started pressuring her for a diagnosis. She finally agreed to a special urine test for covert hypothyroidism. This came back positive, following which I was referred to an endocrinologist and put on L-thyroxine.
My constipation cleared immediately, and hasn't returned in the intervening seven years. The hair loss stopped too, though sadly the hair I'd already lost didn't grow back!
Good point. However I should say that for me - I've been taking Levothyroxine for 15 years and had alopecia areata even as a child but never noticed that varying dosages of Levothyroxine helped at all with my constipation.
I suspect not everyone who has hypothyroidism gets all the established symptoms. I suffered from constipation, tiredness, hair loss, dry skin, brittle nails and had a resting pulse of only about 48 (although I'm no athlete). However, I didn't put on any weight, and crucially have never suffered from the cold, which is another classic symptom of hypothyroidism. Like everyone in my family, I've always been the type who hates hot weather and wants the windows open even in winter!
Conversely, a friend who was clinically obese and always felt cold was diagnosed with hyperthyroidism a few years ago, after being rushed into intensive care during a severe attack of atrial fibrillation.
Unfortunately I've had several impacted colons which is the official name for what you have. What will clear you out is something called magnsium citrate. Get yourself two bottles of it and drink the first bottle, wait 12 hours and if you still aren't cleaned out take the other bottle.
My guess is that you got constipated taking pain pills for your surgery. That is a common problem. If that is the case and you've never had constipation before then you probably won't have to do anything else. But if you have a constant problems then you should use Merilax once every day. It will keep you regular as clock work.
Boy Lily, this sounds very much like me! I have had what you have explained most of my life! Right down to the heat intolerance, and I have always been on the thin side! I have been wanting to go to an endocrinologist to have things checked out, as I am always on the high end of normal, yet still in the normal side, yet I have all these symptoms of a thyroid issue. I have changed primary doctors, so when I see the new one, I will mention of this. I am glad I read your post!
Hi Deidra,
It's important to establish which value is high. I don't know how much you know about this, so don't want to insult your intelligence.
Just in case anyone reading this doesn't know, there are two values you need to look out for. One is T4, the main thyroid hormone, the other is TSH, which is thyroid stimulating hormone secreted by the pituitary gland. If the thyroid is failing, the pituitary will secrete more and more TSH to keep it working. If the thyroid is over-active, the pituitary will drop its production of TSH, to avoid the body being flooded by too much thyroid hormone.
So the result is that high TSH usually goes with low T4 and indicates hypothyroidism, whereas low TSH goes with high T4, indicating hyperthyroidism. Hypothyroidism is more common with autoimmune diseases, which tend to nibble at the thyroid, but some people can go hyperthyroid, especially those with Hashimoto's.
Doctors usually pick up quickly on people who have an overactive thyroid - though that obviously wasn't the case for my friend. However, things can be less clear when the thyroid is underactive, as mine is. Often the pituitary manages to keep T4 levels within range by secreting huge amounts of TSH. Many doctors (like my former GP) feel that this situation is satisfactory, even if the patient is exhibiting clear symptoms of hypothyroidism. Taking levo-thyroxine (the usual therapeutic form) carries a small risk of exacerbating osteoporosis, and a minutely increased risk of breast cancer. A doctor who goes with this theory will leave patients suffering symptoms of hypothyroidism almost indefinitely as long as their T4 is OK. Other doctors believe that prolonged stimulation by the pituitary is not good for the body, and that symptoms of hypothyroidism should always be treated in the presence of raised TSH, regardless of T4 levels.
You do need to sort out which situation you're in - hypo or hyper. The latter is by far the more dangerous in the short term, as it can lead to heart problems. The consequences of hypothyroidism are generally less serious (aside from the fact the symptoms are unpleasant for the patient). If left untreated, the heart rate and the force with which it beats will gradually slow down over time, eventually leaving the heart muscle weakened, causing congestive heart failure. But this is a very slow process. The mental symptoms of an under-active thyroid can also mimic dementia in the elderly, though can be reversed by giving thyroxine.
The problem arises when hypothyroidism is allowed to go untreated into old age, until the heart muscle has weakened. This actually happened to one of my great-aunts. At this point, it can no longer be treated, as suddenly upping the amount of T4 in the blood risks over-stimulating the weakened heart muscle, resulting in acute failure. Some doctors will not start a patient on thyroxine after the age of 65 - which is why I was getting more insistent as I moved on through my 60s! I was already 66 by the time I got to the endocrinologist, but she said it would be safe to put me on a small dose of thyroxine as my heart was OK. The dose was slowly increased after the next six months.
Once you're on thyroxine you can usually continue taking it for life, but the dose may have to be reduced in extreme old age. T4 and TSH levels need to be monitored by blood tests every 6-12 months and the dosage adjusted if necessary.
Sorry if this is long, but it might help someone. I'm currently on the night shift (it's 2am here) and it's a slow night so I have time on my hands!
Thanks for your reply. I'm interest to hear more about your neurological issues. My pain has subsided in the last day or two. Rest assured I am going to get a referral this week!
All my dr recommended was a stool softener for 7 days. I'm also always anemic so the iron pills work against me. It's a vicious circle. I am going to get a referral this week to a specialist. Thanks for all your help!
I've resisted drugs simply because I thought my symptoms were really just dry eyes and mouth. I can deal with the ten fillings I need each year even though I brush well everyday. Now I realize my "ibs" is likely more due to SS. I just don't want any crazy side affects from meds. Unless of course the make me shed a few pounds. Lol. Anyone have side affects from their meds? Curious.
Yes. I had my thyroid tested when i was feeling well enough to be working out 5 days a week and not making any progress. Figured that thyroid could be the reason. Tests came back normal.
Sounds like you really need that referral, especially if you have iron-deficiency anaemia. There's almost always a cause for that, and it needs to be found and treated.
I've had loads of allergic reactions and side effects to these antirheumatuc drugs unfortunately. Been on Cellcept (MMF) for 8 months but now up on highest dose and struggling with this one too. Dry eyes and mouth have been a significant annoyance but it's the systemic stuff that has really been a much greater problem for me - including early stage kidney disease, GI issues (GERD, Gastritis and Dysmotility), and an MS-like set of signs and symptoms which the Mycophenolate/ Cellcept seems to have helped with. Fatigue is out of this world though and I don't know whether this is the MMF or the Sjögren's
Drugs help limit harm throughout our bodies from Sjogren's. I've used evoxac/ cevimeline for at least 14 years and my nose, mouth (therefore teeth and entire digestive system), eyes, sinuses have stayed far healthier than they would have without.
Perhaps you brush too vigorously, with hard bristles and/or within 30 minutes of eating, and use regular pastes and rinses. 10 cavities a year is a huge alarm sounding that things are wrong in your mouth. When I started using evoxac and dry mouth pastes & rinses, I quit having as many problems (tho I never had more than 3 cavities in a year, and that only twice).
Ditto for eyes: accepting dryness without treating it means suffering permanent damage all the sooner.
Dry mouth means a decrease or absence of saliva. Saliva starts the chemical breakdown of food and access to nutrients therein. SS folk have fewer digestive enzymes in stomach & gut so of course we have many digestive problems -- entirely too much of the process is omitted so the poor gut just tries to jerk the food through the system.
The evoxac makes moisture more available to mucus membranes throughout the body, and the gut is a mucus membrane, along with eyes, mouth, nares, sinuses and lungs. When I use this med, I help my whole body.
The only side effect I suffer is that my head sweats more, especially with any exertion in hot humid weather which we have 70% of the time. I changed hairstyles because I need the evoxac.
I tried evening promise caps but at the 2 month mark my eyelids were so puffy that I couldn't see enough to drive. I am now to the point that I'm willing to try plaquenil, especially if there's a chance that it might ease some of my aches & pains.