I'm so sorry that you are suffering. I'm not a doctor and I know next to nothing about this stuff but I'm learning through my own illness. It strikes me as very odd that neither your Gastroenterologist nor your Surgeon want to remove your gallbladder. A gallbladder functioning with an ejection fraction of less than 35% isn't working properly. If I were in your shoes, I'd seek another opinion.
Your symptoms could be caused by SO many things including microscopic sludge/stones in the common bile duct, diseased gallbladder, Sphincter of Oddi Dysfunction, Small Bowel Bacterial Overgrowth, chronic pancreatitis, acute pancreatitis, minimal change pancreatitis, autoimune pancreatitis, etc.
There are two less-invasive tests that might help: Endoscopic Ultrasound (EUS) and MRCP-S (Secretin). The EUS requires sedation and is similar to an upper endoscopy but it is now the gold standard for digestive problem identification. Right now, EPISOD studies are being conducted in the United States which might be a way to get to the bottom of your symptoms without the cost if you qualify and can't afford health care.
Metamucil or a similar daily fibre product is a great help for MANY people with abdominal pain. It does not make you go, it makes you regular by adding fibre to the watery stools, making them firm. You could try it for a month and see if it helps.
Many people have great success with digestive enzymes and pancreatic enzymes. This is something you can talk to your Family Doc about. I'm told that they won't do any harm so really - unless you have side effects - there isn't a downside to trying them. Your Doc might even have samples. This is something you can do now and it reduces the amount of work the pancreas has to do which will also reduce any damage to the pancreas. You can get them at the health food store, over-the-counter, but make sure they only have proteases, amlyase and lipase.
A low-fat (less than 35 grams per day), fibre-rich diet can make a BIG difference. Eliminating fried foods from your diet and starting with bland foods, you may get to a point where you have no symptoms. Then you can add new items to see how you feel. Of course, alcohol is a bad idea but when you're as sick as you are, you're not even tolerating water well.
It's fantastic that you are keeping a detailed journal as this will identify any cause/effect relationships.
You are not alone! Try to stay positive and reach out for support when you need it. Talk to your Doctor, family, friends, co-workers, church or social service volunteers or anyone you feel safe with.
Search yahoo! groups for "Sphincter", you will find quite a few groups. Both Michele's and Maddi's deal with sphincter of oddi dysfunction, pancreatitis and undiagnosed symptoms and are well worth joining. Yahoo! groups offer a lot of really interesting information that might help you, too. Since many of us are relatively house-bound or bedridden, it has the added benefit of a much-needed social outlet.
The problem with digestive problems is that you can look perfectly normal and be in agony. Just because they haven't found the problem, it doesn't mean there isn't one. Hang in there!
Take care of yourself. God bless, good luck and Godspeed. All the best,
Thanks so much for responding and for so much information!
When I had the HIDA - my GP sent me to the surgeon right away based on the ejection rate; seeing as it was 17% it seemed logical that I'd need to have my gallbladder removed.
When my husband and I went to talk to the surgeon - he was really skeptical. He'd press on areas that would be sensitive to a person who has gallbladder problems and I would not have any pain or problems. He wasn't convinced that it was my gallbladder so he sent me for the CT. I show no stones or anything out of the ordinary. The surgeon said that even with a 17% ejection there are people that can live like this. He said he can't promise that down the road I would not have to have my gallbladder removed - but he feels that removing it now would truly not eliminate my problems and he said he'd hate to make me go through the surgery only to feel the same way. I have not had a classic gallbladder attack and high fat or low fat make no difference. So surgeon and my GP consulted and agreed I need to go to a GI doctor.
Talked to GI doctor and he too agreed that it didn't seem to be gallbladder. He said that based on one of my biggest concerns being gas that the colonoscopy was necessary. Everything came back fine.
Doctors believed that I got some kind of intestinal bug when I had dinner with my husband but by time I went to the doctor (about 3-4 weeks later) there might have only been trace amounts and it had mostly worn out of my system. GI doctor put me on an antibiotic to help clear up my system and the gas. GI doctor put me on 2 months of probiotic Flora Q. After that I stopped taking them (as he said it wasn't necessary) but I heard about Align so I am on that.
GI doctor said that since it's mostly gas and I'm not often nauseated that I will have good days and bad days. Unfortunately his theory of pass the gas doesn't always work sometimes it just stays in and won't come out.
I don't have a problem with fiber - I eat alot of veggies, I eat Activia yogurt everyday, so I'm trying to take care of my digestive tract. I was on fiber tablets but I'll check out the Metamucil.
The food journal wasn't helping - I could eat pizza one day and be fine and 2 weeks later be bad and 1 week after that be ok again - I wasn't getting consistent results so I stopped with the food journal as it wasn't leading to anything.
I have had my supicions that my stomach problems are being caused by my sinuses; I have alot of post nasal drip and have been googling that and have seen that it can cause stomach problems and gas as it is difficult for the body to break down the mucus (yuck!). I had sinus surgery last year and have been going back to my ENT doctor as I'm still having problems - he sent me to an allergist. I went yesterday and was surprised that the scratch test for everything came back negative. I have to get the shot test in 2 weeks. I am negative to all food allergies (nuts, chocolate, eggs, wheat, etc.) and all allergens. I figured that might help figure something out too.
I've seen all doctors and read everything. I agree - I keep thinking that something is wrong but since everything comes back negative I'm starting to think I'm crazy. The doctors are always happy when everything comes back negative and yes it's great but then what's the problem? I've stopped pursuing it because it comes back negative and I feel sorry for my husband when I seem like a nut going to all these doctors for no reason. I just want my life back!
Thanks for your help I appreciate it.
1. When gallbladder doesn't deliver enough of bile into intestine, fats can't be digested completely, so some of the fatty acids travel to colon, where normal bacteria consume them and produce gas.
Tests to see, if gb is the cause:
- fats there were not absorbed in the small intestine, appear in the stool, that would be whitish, greasy, floating, foamy, sticky and foul smelling. Stool fat test show exactly, if you excrete excesive fats in stool or not.
- you have few days of low fat diet - if bloating disappears, gb is likely cause. If not, then it's not.
2. A parasite (giardia, entameba, worms...)..from September could still be in your intestine. O&P tests are often false negative...Now, in parasites, it is a blood test that often show elevated eosinophils (special white cells) and IgE antibodies. These are also regularly elevated in any allergy. So, if your blood IgE antibodies are normal, it's not likely you have allergy or parasites.
3. Do you BURP shortly after a meal, and experience early satiety? If yes, it could be from H. pylori (blood test is not 100% reliable; but a gastroscopy with biopsy should be).
4. After food poisoning from whatever reason, a so called IBS can develop. There are irritant foods you have to identify one by one and exclude them from diet, if this is the case.
5. Probiotics are - bacteria. They are helpful only, when your normal bacteria were destroyed by antibiotics, or in (acute) food poisoning, or maybe in intestinal candida. They are always bacteria that yield gas in intestine, so, you can simply stop with probiotics, and see, if something changes. Probiotics doesn't cure anything, they also don't kill any other microorganisms, they just "take place" in intestine - taking probiotics have sense only when you don't have enough of your natural bacteria - like you take iron only when you have iron deficiency.
So, what you can do:
1. ELIMINATING DIET
- Lactose-free diet. Exclude all dairy and all lactose containing foods for 2-3 days..This would help if you have lactose intolerance
- Low-fructose diet. Exclude as much fructose and sorbitol, as you can (no sugar, honey, fruits, no products with fructose, HFCS or sorbitol) for 3-4 days. This would help, if you have fructose malabsorption
- Gluten free diet for 2 weeks.
- Fast for 4 days, then start with foods that will not likely cause bloating like rice, wheat-free pasta, wheat-free bread, potatoes, white meat, citruses, bananas..(but avoid foods from above mentioned trials on the beginning. This test requires some good plan though, and maybe a guidance by a dietitian.
If diet trials don't work, there are also breath tests for lactose intolerance, fructose malabsorption, and small intestinal bacterial overgrowth.
2. Try to treat post-nasal drip. Mucus, comming in the intestine is broken down by bacteria that yield gas.
Don't get overwhelmed with these suggestions. Use intuition..
HI thank you for responding - I am getting alot of good information on here.
Let's see - based on what you are describing for GB - I do not have any loose stools, any fatty residue in stool or toilet, etc. - everything looks normal as it always had.
Additionally - this does not seem to happen more or less whether I have fat or no fat - I am not saying I'm the model eater - but I don't eat alot of fat - greasy food has always been a turn off to me. On occasion I do have some french fries (not many) or a burger (not often) but the results are no different than if I had grilled chicken and green beans for dinner.
The doctor did bloodwork and stool sample which was to test for a parasite. I don't know if they did the correct testing but they did say this all came back negative. As a precaution as they feared there might be trace bacteria they did treat this with an antibiotic in case it would flare up again. They thought it would be simplest to attempt to treat.
I agree with you about the probiotic - not good or bad just there. Align is allegedly good for gas problems so I thought I'd give it a try but I don't think I'm buying another box - based on the guidelines that Align offers on what you should experience week by week I notice no difference.
I am not OFTEN nauseated - but it does happen. In the beginning it was much worse. Now it's mostly gas. On occasion if the gas is very bad and cannot be released it makes me nauseated - I think it's the pressure, buildup and distention in my stomach that makes me nauseated.
I eat slowly and carefully and I do not overeat. I used to eat faster and tend to overeat - I've learned my lessons over the years.
I do not burp often - never have. This is all gas on the other end that is the problem and doesn't often wish to be released - it just kind of hangs out.
No diahhrea. No constipation. No loose stools. I usually have a BM once a day; on occasion once every other depending on what I eat.
I am not huge on dairy. I do have my cup of Activia in the morning but I cannot stand milk so I don't drink it (I don't mean it makes me sick - I hate the taste). I use non-dairy creamer in coffee and I don't eat alot of cheese. I do have it on occasion but not daily.
I do eat alot of chicken and fruit - so perhaps I can try to be more aware and eat more bland foods as you suggested. I can try all of it but a bit at a time.
Where would I go to have the breath test done, fructose / lactose and intestinal bacterial overgrowth? Would that be my primary doctor, my GI doctor? Would you happen to know?
I am working to treat the post-nasal drip while I'm at it because it's flat out annoying. My throat is totally raw and painful today from it. The allergist prescribed a nasal spray to help that so I need to get that filled to see if that helps a bit while I sort out the rest.
Scans were looked at for stones, blockages, cysts, inflammation and everything was normal (for ultrasound, CT, and colonoscopy). Samples were taken and tested during colonscopy and seemed normal.
GI doctor did not feel an endoscopy was necessary at the time as the gas is more related to colon hence doing a colonoscopy and not endoscopy.
Never thrown up, never actually close (never gagging or running for the bathroom or anything), no diahhrea. Just feel very gassy, bloated and again as I mentioned above I think I feel nauseated from the gas buildup; but not being a doctor I could be wrong. I don't have gas everyday. However I notice on occasion when sinus problems are bad that my gas and stomach cramping / nausea is worse. Maybe it's a coincidence, maybe I'm on target, maybe I'm nuts!
Thanks for all the help and advice. I'll keep at it!
This post nasal drip may really contribute to gas. It's mucus being degraded by intestinal bacteria that may yield gas. Try anything to solve this.
I'd recommend you having those diet trials - they are short and easy...if something helps, you get a good free info from this. Breath tests come after this - it's gastroenterologist that can do them.
Lactose intolerance, fructose malabsorption, celiac disease, and SIBO are all problems of small intestine. Celiac disease is diagnosed by biopsy of duodenum during upper endoscopy. So, it's not only a colon...
Hi thank you so much! I am really working on the post nasal drip. I'm actually off to my doctor (again) this week becuase my throat is in severe pain and agony from it and I just cannot go the whole weekend like this; I'm hardly sleeping. So maybe this is what it is.
Thanks for explaining how it can affect the stomach - I really appreciate it.
Have a good day and thanks again.