I was disagnosed with SJ a couple of years ago. About a year ago, the digestive issues began to hit. As they were not to bad, I waited. It's gotten much worse and more often. When it hits, it's a chain reaction. Usually starts with emergency trip to the bathroom, shortly after I eat, followed by many more during the day. Then heartburn, difficulty swallowing and major burning/pain in the bum. Blood tests said not IBD or Celiac. The GI doc is bugging me to do an edoscopy and colonoscopy which I keep chickening out of plus I have a huge out of pocket cost. I have had several invasive surgery's for other Sjogren's related symptoms which were a waste of time. The answer every time has been "inflamation." We are already trying meds for GERD. Has a colonoscopy and/or endoscopy helped any of you to get a handle on the GI portion of this disease? Because of these tests, were you able to get a treatment that has been successful for your GI symptoms. Was it worth it? Thanks for your opinions.
They are good screening tools. The upper endoscopy can tell if you have Barretts esophagus and esophagitis and the colonoscopy can screen for polyps.
Anna
I was scoped from both ends a couple of years ago. The colonoscopy gave me peace of mind that my intestinal problems were not caused by cancer and the upper scope showed that I have minor inflammation. I think that when you have GI problems, it's just a good idea to have those tests so you know what you're dealing with.
In 2006 I had both tests for a couple of reasons:
One: I had had a polyp (the precancerous kind) on an earlier colonoscopy, so had to have another one within two years.
Two: I had terrible anemia, and they wanted to rule out GI bleeding. No bleeding. My anemia is a co-condition of my pSjS/osteoarthrits/IC blah blah blah.
However, I cannot imagine paying for these tests! That is criminal IMHO.
That said, after 40 you should get a baseline, and you do have a bunch of serious reasons to find out what is going on.
Sigh.
Easy to recommend expensive tests.
Also, you might ask what they are looking for or might find, and how that would change your treatment.
It's a hard thing to know. Theoretically you should have the tests. Financially, well, ask for a discount. Seriously!
Carolina
I too had both tests done, mostly to rule out Crohn's disease as my brother has that. Both test came back fine and to date there best guess is either IBS or some sort of Sjogren's involvement but they can't say for certain.
I would say for me, it was worth it to rule out Crohn's disease. I would say that it did not provide me with any help or treatment to ease my diaherra issues.
Hope all works out for you.
I had a colonoscopy 2 years ago that probably saved my life. I was 40, and had a type of polyp (sessile serrated) that the doctor said would definitely have become cancerous, probably within a few years or so. My endoscopy confirmed gastritis and reflux. I wasn't sure I had reflux because my symptoms weren't obvious. Now I'm on Nexium for the reflux. I hate Sjogren's so much, but if it weren't for the Sjogren's, I'm not sure I would have had a colonoscopy. So in a sense, Sjogren's may have saved me from colon cancer.
I've since had a friend my age diagnosed with Stage 4 colon cancer. If a doctor thinks you should get a colonoscopy, you should. It's really no big deal at all.
Good luck,
Cathy
Thank you all for your wonderful advice. Sounds like the right thing to do to at least get some more answers. Now if I could just get my wonderful insurance Anthem Blue Cross PPO to agree (they are denying full coverage because I am not 50yrs old when I would get it for free).
Bunchiz
I had an endo, they found a stricture that they expanded and now my food doesn't get stuck half way down.
Please do not find a reason to "chicken out" of a colonoscopy. My sister just died from colon cancer last September. It had been 8 years since she had a colonoscopy and they recommend every 10. Now, I have to go every other year. The colonoscopy is nothing. The prep isn't fun. But after that, you're given meds to knock you out, or in my case make me silly, and the docs do their work. My husband didn't even know he's had his done when he woke up.
Lucy
I also had an endoscopy and colonoscopy a few years ago. The endoscopy was okay, and I ended up having to have my esophagus dilated because of strictures. I'm scheduled for another endoscopy this Friday because my GERD has flared up lately and my GI doctor wants to check for esophagitis and more strictures (and anything else that might be going on.) I'm not sure if I'm going to be able to do it though, as I found out today that I have a $1,000 deductible on outpatient procedures on my insurance, and I really can't afford to pay for anything like that right now.
As for the colonoscopy, all it did was make me swear to never have another one! The procedure itself was okay, because I was asleep, but the prep was murder! Never, ever again!
Sounds like you have symptoms such as swallowing difficulty and diarrhea. When you have symptoms, it becomes a diagnostic scope and not a screening scope. Ask your insurance and your doctor if he will be coding symptoms not screening. I've worked for a surgeon for years and this makes all the difference.
Anna
I had an upper GI endoscopy because of coughing, breathing problems, and my larynx was red. It showed Barrett's esophagus and I began Nexium. Now I don't have all of those problems. I never had heartburn so it was a surprise.
I had a colonoscopy because of anemia and although nothing was found, I was glad to have it as I would have worried. I just take iron now.
All of this was when I was 41 and my insurance didn't complain. I get upper GIs every 2 years now. No changes.
I think it best to pursue these tests because these problems are so common with Sjogren's. Good luck to you!
Amy
Had the works...found two polyps which were removed. Also, Doctor prescribed for me Bentyl 20 (I use the generic name of Dicyclomine 20 mg). I have had a great improvement. I started out with four pills per day..before mills and at bedtime. Now, I just take one at night and am doing fine. Also, did the stretch thing that I can't think of right now and food goes down better. Hope this helps. Hang in there. Hugs, Redetha
I had colonoscopy done 7 years ago- no symptoms what so ever, just a routine check. They found a 4 inch polyp, and had it removed. I had no blood in the stool.
So I agree, Sjogren's or no Sjogren's - get a colonoscopy. I am scheduled for a colonoscopy now every 7 years. I have heard some HMO's like Kaiser won't do colonoscopy and only sigmoidoscopy due to cost.
Pegasus
Did you doctor document that you have Sjogrens?? Sometimes they treat the symptoms but don't write down a diagnosis as they know this can affect ones ability to get health insurance.
Also, I would have the doctor send in an appeal or some type of a form declaring the need for these tests. You know that you are having GI issues and the doc wants to find out what so he can treat you. This should not be too much too ask. Tell the insurance person on the phone that this is sure a lot cheaper than having you be diagnosed with cancer down the road and need surgery and other expensive treatments. Sometimes me thinks the people that run these insurance companies and make the decisions are a brick short of a load. Only common sense to do preventive etc before gets more spendy. They probably all work on some kind of commission.!!!! Sorry if I sound bitter!!!
The other reason for having these tests done is to find out what is going on and establish a baseline to refer to as the years go by. If you know what you had in 2010 it makes it easier to decide what is going on a year from now---is it worse or better type of observation. Good luck!
If nothing else save up some money to help pay some of the deductible .Easier said than done I know. Irish ;D