My husband has severe stomach once a month for about 10 days. He has had cat scans blood work ,colonoscopy, endoscopy all sorts of tests. No one can find out the problem. When he has this problem, he will not eat and just wants to sleep. He is losing weight with each episode. Do you have any suggestions?
I'm so sorry your husband is suffering. There are few things worse than seeing someone you love in agony. I just replied to a similar post, so I'm going to cut and paste. Feel free to create a new post if it doesn't help.
I'm not a doctor and I know nothing about medicine except what I've learned through my illness. If there is any way, request copies of all your husband's test results, they could be very illuminating. I've learned more through test results and reports than I ever imagined. Doctors tend to compress information and sometimes they leave things out entirely. Forgive the length of this post but I want to help. If I had an eighth of this information when I first got sick, it would have made a world of difference for me. Also, I'm NOT sharing my story here. This is just good information that might help.
Your husband's symptoms could be SO many things including sludge/stones in the common bile duct, gallbladder/gallstone problems, Sphincter of Oddi Dysfunction, Small Bowel Bacterial Overgrowth, acute pancreatitis, chronic pancreatitis, autoimmune pancreatitis, minimal change chronic pancreatitis, etc., etc., etc. Here are a couple of links to abdominal pain charts:
I know you've mentioned that your husband has had CT-Scans, blood tests, colonoscopy, endoscopy and other tests. There are other minimally-invasive tests such as the Endoscopic Ultrasound (EUS) and MRCP-S (Secretin) which can image the pancreas and ductal system. The EUS is the gold standard test for diagnoses, it does require twilight sedation and is similar to an upper endoscopy, it clearly shows more than any other test. Less helpful but also VERY worthwhile is an MRI-S, which is essentially an MRI with the drug Secretin administered.
You're probably going to wonder why I'm talking about stool next but regulation of bowel movements is a huge help when you have abdominal pain and nausea. 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. Senokot is also a great product that acts like glue to bind everything together.
Many people have great success with digestive enzymes and pancreatic enzymes. This is something you can talk to your husband's primary Doc about. I'm told that they won't do any harm so really - unless you are contraindicated or 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 buy these at the health food store, too, but please make sure they only have protease, amlyase and lipase. Here are some links:
A low-fat, fibre-rich diet can make a BIG difference. If you eliminate fried foods from your diet and start with bland foods only, you may get to a point where your husband has no pain. Then he can add new items to see how you feel. Less than 30 grams of fat per day is a great starting point. Some argue that high-fibre diets can be harmful but they never seem to have any evidence to support that. Either way, potential diet changes require personal research and a chat with your Doctor before you actual undertake them.
Ask your husband to keep a complete log of everything that enters and leaves his body and to be honest. It can help identify patterns in your foods, symptoms, medications, bowel habits and pain level. This is one of the best ideas here. If you do nothing else, please try this. Hindsight is 20/20 and it can honestly lead you to certain foods or medications that might be contributing to your symptoms. I have a three strikes rule. When a food bothers me, I stop eating it for a few weeks and try it again. If it hurts me again the second time but I love it, I'll avoid it for a couple of months before trying it again. Three strikes and it's out.
YOU are not alone and neither is he! 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. Don't let your your husband's illness take over your lives.
One of the best sites for information is: http://www.top5plus5.com/. Their group is also incredible. Search yahoo! groups for "Sphincter", you will find quite a few groups. Both Michele's and Maddi's are worth joining, too. There is a lot of great information there that might help. Here are a couple of links but find groups that you like:
I hope I haven't overwhelmed you with information. I believe that knowledge is power and you are your own best advocate. I've been undiagnosed for three years now but I'm getting closer to answers. I want better for you than to wait and worry and wonder day after day, month after month and year after year! At least my pain is fairly well managed and I'm seeing specialists in the appropriate field. Take care of yourselves and each other. Good luck and Godspeed. Please post or email if you want to vent or ask any questions. All the best,
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