12 days ago I woke up with a terrible "pit" in my stomach. I'd been having problems with a lot of burping for a few months before that. I can't eat more than a few bites or the epigastric discomfort is unbearable. I saw a GI doctor last week, and this week had an endoscopy, abdominal ultrasound to check for gallstones, HIDA scan to check the function of the gallbladder, an MRI and a Gastric Emptying test. All have been normal.
I have lost SO much weight and look like a skeleton. I'm very weak. My GI doc. is confused and said the next step is to go to Shands (in Jacksonville, FL), or Mayo (in Gainesville). Have any of you had anything like this happen? I don't know if this is Sjs related, but if something doesn't improve quickly, I'm afraid a feeding tube will be in my future.
Hi Lindaneall, so very sorry to hear about your gastric distress. Just a thought, has anyone mentioned this option to you before? Dr. Gabe Mirkin, who has a syndicated radio program and is in private practice in Silver Spring, Maryland, believes strongly that all burping and belching is abnormal and is due to overgrowth of bacteria in the intestines. The primary culprit, he has found, is helicobacter pylori, especially if the belching is associated with burning in the stomach. You can test for this bacteria with a simple blood or breath test. Even if this test is negative, however, he notes that research has documented that there are many other bacteria which could cause this problem. He has much success in treating this condition.
You may wish to find his radio program on the Net or call his office to get more info. I don't know if this will help, but at least its another option. Please let me know how you make out.
Hugs,
Daisy
it gets so depressing when we get these problems that (they ) cant seem to figure out,, I have had GI problems for over two years also,,, scopes both ways,, ony thing I have is Barretts,, but that doesnt explain the pain and nausea from everything I eat,, it hasent been said,, but I do believe its gastroparesis,, but I dont get paid to Dx myself,, I hope you find out whats going on,, i too look like a skelton,, eating should be a pleasure in life,, not something we should have to fear
Daisy, thanks so much for your post. During the endoscopy, the GI dr. cultured for H.Pylori and the results should be back on Tues. I just mentioned to my husband today that I wondered if it was some sort of bad bacteria that was in my system. Besides H. Pylori, I wonder how they could test for the other types? The GI doc. started me on an antibiotic specific for the intestines, yet I stopped if after 2 days. My sister got severely ill with colitis after a C.Diff infection following antibiotic use. I don't mind being on antibiotics if necessary, but want to be diagnosed with something first before I kill off the good bacteria also. I have begun probiotics and hope that helps. I will check out the Dr. you mentioned. Thanks so much!!
Navydad, I hope they can figure out what is going on with you, too. I'm sorry you suffer so.
I belch a lot too. I have gastroparesis and just thought it was from this but may ask the GI doctor at my November appointment.
Anna
Quote from: lindaneall on September 04, 2010, 05:45:31 PM
Daisy, thanks so much for your post. During the endoscopy, the GI dr. cultured for H.Pylori and the results should be back on Tues. I just mentioned to my husband today that I wondered if it was some sort of bad bacteria that was in my system. Besides H. Pylori, I wonder how they could test for the other types? The GI doc. started me on an antibiotic specific for the intestines, yet I stopped if after 2 days. My sister got severely ill with colitis after a C.Diff infection following antibiotic use. I don't mind being on antibiotics if necessary, but want to be diagnosed with something first before I kill off the good bacteria also. I have begun probiotics and hope that helps. I will check out the Dr. you mentioned. Thanks so much!!
Navydad, I hope they can figure out what is going on with you, too. I'm sorry you suffer so.
good idea to stop the antibiotics,, IMO Docs are to quick to whip out the pad and write a scrip for antibiotics when they have no idea what there up against,,, think about our stomachs,, we send food down there,, we send meds,, some for things that affect some other part of our body, its like a warehouse ,, dispensing things where tehre needed,, and once we get problems with out stomachs,, everything breaks down,, our guts were not meant to be dispensing machines for all the meds we have to take and when we send something down there FOR the stomach,, its just like choking the very thing we need to stay alive,, all the doctors we see,, each writes tehre own scrips,, almost without regard what there doing to teh rest of our bodys and why should tehy,, they dont have to take them and see the effects on teh stomach,
You are wise to be Dx;ed with something in your stomach before you just dump something down there that maybe has no reason to be tehre and you end up doing more harm then good,,, I;m weaning off most of my meds,, I said most,, not all,, some I just dont kow if tehre doing me any good or not,, I;m afraid to stop the Neurotin,, it may be keeping teh SFN at a loud roar instead of the wanting to toss a rope over a garage rafter
Linda,
I have had the exact same problem a couple times in the last 3-4 years. The last one cost me 50 pounds. I have severe gastroparesis and thought it was from this. I also have a history of autoimmune pancreatitis. I had all the same tests had they were negative. I even had the breath test...also negative.
It just so happens that I have started having the problem again about 2 weeks ago. Already losing weight (which I don't have to lose). Have appt with GI at the end of the month, but may not be able to wait until then. I do okay if I don't eat or I take pain medicine. Sadly the last bout lasted about 8-9 months, but did resolve back to my normal mess (with the gastroparesis) which I've learned to cope with.
I do think the problem is in the small intestine (the one area they can't see well). I'm SURE the gastroparesis is aggravating the problem.
Burping (excessive) is a sign that something is wrong. I did find last time that I could take 3-4 beano tablets before trying to eat anything, and it helped because it stops the enzymes that produce gas in the stomach. However, it does NOT solve the problem, just hides it and relieves SOME of the discomfort.
Sorry I'm not much of a help, but do know EXACTLY what you are talking about and going through the same right now.
G'day lindaneall, sorry for your pain. Did they check to see if you might have an Umbilical Hernia? I had a lot of your same symptoms. But all those tests came up negative. They finally figured out it was an umbilical hernia. I had surgery for it just 3 weeks ago. So far no problems.
Seeker.
Hi again Lindaneall:
The condition that I was referring to in my earlier post in this thread as a possibility to look into is called SIBO, Small Intestinal Bacterial Overgrowth. I too have been down this trail. In addition to having severe primary Sjs wih several extraglandular complications, I also have severe gastroparesis and have lost alot of weight due to this issue as well. I have plenty of empathy for you and don't want you to have to go thru any more of this, so if this suggestion helps you or others in any way I would be just thrilled.
There are several methods to test for SIBO. Stool samples, endoscopic sampling from your stomach, Hydrogen Breath Test (HBT) and a fluid sample taken from your small intestine under endoscopic means using an Xray to determine that they are in the right area to obtain the proper sample. If the test results that you are waiting for come back negative, I urge you to keep chasing this down. Its often H. Pylorii, but it could be others as well.
Big hugs to you, and make sure to update us on what's happening.
Daisy
DAISY, the GI doc. wondered if I might have SIBO. Besides the burping and stomach "pit" feeling, I have also had a lot of excess gas and bloating for quite some time. He gave me some samples of Xifaxan to take (550 mg. 2 times/day). It is an antibiotic that specifically targets the intestines. I have been on it for 5 days. At first I thought it was helping a little, now am back to the same bad discomfort.
I am so UNHAPPY that the GI doc. didn't test for this first instead of immediately slapping me on antibiotics. I didn't realize there were tests for this until I had researched it further and already started on the Xifaxan. By now I am sure the tests would be invalid since I am already on antibiotic therapy. I'll let you know what the H.Pylori tests say when they come back on Tues. They were neg. for H.Pylori 22 months ago when Celiac was ruled out.
SEEKER, the GI doc. did see a small hiatal hernia during the endoscopy but I was told it was very small and wouldn't cause problems.
Thanks so much to all of you for your helpful ideas.
Hey linda, have you found out anything abt the cause?...im having the same symptoms....
Could you be having a problem with Yeast? When I start burping with a similar pain, I zap for yeast and after a day or two it is gone.
Quote from: lindaneall on September 05, 2010, 04:59:28 PM
DAISY, the GI doc. wondered if I might have SIBO. Besides the burping and stomach "pit" feeling, I have also had a lot of excess gas and bloating for quite some time. He gave me some samples of Xifaxan to take (550 mg. 2 times/day). It is an antibiotic that specifically targets the intestines. I have been on it for 5 days. At first I thought it was helping a little, now am back to the same bad discomfort.
I am so UNHAPPY that the GI doc. didn't test for this first instead of immediately slapping me on antibiotics. I didn't realize there were tests for this until I had researched it further and already started on the Xifaxan. By now I am sure the tests would be invalid since I am already on antibiotic therapy.
-Same thing happened to me, including the Xifaxan. It really really screwed me up because it was YEAST all along.
so sorry you are going through this.
Sounds from the responses that these issues are common amongst those of us with sjs.
Before I actually got my sjs diagnosis I had a severe bout of GI upset lasting several months. Belching, bloating, diarrhea and constipation. Stomach pains that would wake me from a dead sleep. Eating became a guessing game- would I be in excruciating pain in an hour? was it worth the risk?
After stool samples galore and both endoscopic and colon exploration I was diagnosed with small intestine bacterial overgrowth and gastroparesis.
I had to totally change my diet to attempt to kill off some of the offending bacteria that should not be living in my intestines and re-colonize it with beneficial ones. No sugars of any kind or fruit. No gluten. I also did a yeast cleanse followed by extensive probiotic supplementation.
I still have issues, first I don't produce enough hydrochloric acid to digest things properly and have to supplement with it.
This effects my ability to break down foods and absorb b12 ( which has led to low iron levels).
The pain , bloating and belching are very rare now.But I REALLY have to watch what goes in my mouth!!.
Thankfully I haven't needed any antibiotics in several years( probably due to my over active immune system!) so I haven't had to deal with the upset in bacterial balance this would cause.
I hope you get some relief, this problem was in many ways worse than what sjs had brought me.
You may want to try a month or two of a gluten free diet. A biopsy is suppose to rule out celiac (if they do the procedure correctly) but it does not rule out gluten sensitivity.
Winnie
IDave 87, I am SO sorry you are having these symptoms, too. I went to a GI motility specialist at the Univ. of Gainesville in Sept. 2010, and was diagnosed with Gastroparesis. I have not done well at all the last 18 months. I am 5'10" and my weight is now a very dismal 91.5 #.
The typical meds or diet used to treat this have not been effective for me. I am left with the option of a feeding tube or TPN, both of which I am resisting at the present time. Some days I am able to eat better than others, so I am very grateful for those "better" days.
I would also do as someone suggested and get evaluated for SIBO (Small Intestine Bacterial Overgrowth). Also, I highly encourage you to take a daily probiotic to increase healthy intestinal bacteria.
The belching and epigastric discomfort are so classic for Gastroparesis. Please keep us posted as to what you find out.
lindaneall, I am really sorry to hear that you are having such a rough time. Such a problem to have!
This is probably just a shot in the dark, but I thought I would mention it. Has the doc done ova and parasite testing??? People can pick up parasites from eating in restaurants and have some really weird symptoms and weight loss.
One of the more common ones is giardia. Just a thought. Wish I could be of more help. IRish