digestive track symptoms

[Lara1]

Hi! Does anyone's BD attack their gallbladder and pancreas? If yes, how do you manage it (medication, diet)? Thanks!

[OpsDave70]

Gall bladder - removed. Pancreas - Creon (pancreas enzyme replacement/prescription) with fatty food. Also, with the pancreas, I found that religiously taking Citracel at least twice a day tended to calm my pancreatitis down over time. Don’t use other fiber supplements as they cause bloating and pancreatitis already bloats you enough. Try to avoid red meat until you get things under control. Expect it to take a year before you can ease back on the Citracel and Creon.

[Jaxxi]

I had pain in the gallbladder/ pancreas area on and off for years. At one point it was so severe I was hospitalised, but they never established what was up. This was before my Behçet’s was diagnosed. There were only a few small gallstones showing on ultrasound and slight swelling of the pancreas. I was offered a cholecystectomy and even had a date for the op. Then I read that peppermint oil is often used for gallbladder pain in Germany so I put myself on a 6–week course of Colpermin sustained release peppermint oil capsules, accompanied by a very low-fat diet. This did the trick so effectively that I cancelled the operation.

I have had a few pains since but only mild ones, and generally when the Behçet’s is active. As soon as I feel it niggling I take peppermint and cut out fats and it settles quickly. My Behçet’s is quite well controlled at the moment and I haven’t had serious gallbladder pains since the meds started working (colchicine first, then switched to hydroxychloroquine.) I am certain they are connected.

[Lara1 in reply to Jaxxi]

Hi Jaxxi! Thanks for the message! Do you have any changes to your bile ducts or liver showing up on ultrasound or blood tests after all these years?

[Jaxxi in reply to Lara1]

Hi. Liver function tests have been a bit out here and there over the years but are fine now the Behçet’s is under control. My last ultrasound was about 10 years ago but I seem to recall the bile ducts looked OK.

[Blearyeyed]

Are you already diagnosed BD? I have only just been referred to get Behcets diagnosis after 11years of symptoms,you can read my post if it helps, but the flare ups that I have as well as mouth ulcers and infections at the very beginning have always included digestive issues, stomach pain and swelling when eating and I have had my gall bladder removed after a number of sever and painful hospital admissions and going on a strict low fat diet to combat the infections until it was removed.

I know that many Behcets sufferers on this site talk of the stomach and digestive pain and weight loss that comes from difficulty eating and digestive issues .

If you can you don't want to lose your gall bladder and especially your pancreas to any disease. Now I don't have it I do need to keep to the low fat , low sugar , low salt diet that can help you when you are trying to make these things better too.

There are certain foods that you can eat everyday to help you gall bladder and liver health,but you do need to check if it inflames your mouth ulcers if you get them , when eating fruit or vinegar.

These foods are also helpful if you are getting liver, gall bladder or pancreas swelling or pain from being on steroids and medication for a long time with the build up of fatigue and toxicity in your system.

Green apples, celery , green pepper , garlic, ginger , the best honey you can afford or local and apple cider vinegar every day ,

you can make juice from ginger and apple and honey or add other salad vegetables with them and use vinegar, honey and olive oil to have a really big salad,

I also take turmeric , garlic and an omega complex supplements each day, great for digestive issues , especially if you are having trouble eating, take during a meal for best absorption.

You will need to be really strict about fat in food and sugar, even the hidden ones, corn, beans, nuts , peas, and big carbs like pasta, bread and potatoes, dried fruits can cause a flare up in your gallbladder , you can only have lowest fat dairy products or non dairy, absolutely no processed food , and you need to eat small portions more regularly because big meals will set it off, thats why vegetables especially greens and soups are really good as they are low fat and you can eat more and feel more full without the pain. Have fish , chicken, pork or Quorn for low fat protein .

Please , keep an eye on it, if that diet controls it , brilliant, if pain or infections keep returning you may end up having to take medication or having it out, hope not!

If you want any more food advice or suggestions for recipes that make the restrictions bareable message me in chat and I am happy to help.

[OpsDave70 in reply to Blearyeyed]

Might want to try going gluten-free for two weeks, then eliminate red meat for another two weeks, while remaining gluten-free. I was bed-ridden until I went gluten-free. I could actually start feeling a difference in about three days.

[Jaxxi in reply to OpsDave70]

Same here OpsDave. I was virtually housebound before going gluten free sent me into remission for 5 years. I knew I had hit the nail on the head within a few days.

[OpsDave70 in reply to Jaxxi]

Wow, I had the same thing happen! Wild!

[Blearyeyed in reply to OpsDave70]

Hi

I am virtually gluten free and only eat red meat once a week when in better health, as soon as I feel the possibility of a flare up, it's 100% gluten free, redmeat free, dairy free, except for probiotic yoghurt and sugar free except for certain fruit and honey. I also cut out yeast and fungi in a flare up to cut out the chance of Candida and the swelling in the intestines, give good bacteria a chance I say, it seems to have helped the severity of mouth ulcers too.

[OpsDave70 in reply to Blearyeyed]

Have you tried Plaquenil for your ulcers? It completely stopped my severe oral ulcers. It doesn’t seem to help ulcers down below.

[Blearyeyed in reply to OpsDave70]

I am still waiting for my first appointment to confirm BD and my GP won't prescribe anything until told to by a consultant. At the moment my worst symptoms are uveitis and eye inflammation, neuralgia, head and neck pain and painful , hot and throbbing joints , legs and pins and needles .

I got steroid drops for my eyes which had the side effect of clearing up ulcers on the back of my throat and seemed to speed up the healing of a skin lesion but have done little to clear my eye issue. Going back today .

Thanks for the advice , I will let you know how things go

[Jaxxi in reply to OpsDave70]

I've been on Plaquenil for a year and it's working really well. Mouth ulcers few and short lived, flares last two or three days once every 4 weeks or so and headaches and joint pains greatly improved. Just hope my eyes hold out!

[Lara1]

Thank you all for the comments! Very helpful, have taken notes! Gallbladder pain was one of the first symptoms of my disease that started back in 2006. It took me years to figure it out and tens of tests and medical appointments. They never found anything wrong with it, no elevated liver enzymes, no infections, no changes to bile ducts on ultra sound. This year fatty liver showed up on the ultrasound so I definitely need to cut down on fats. Plus my pancreas started hurting also this year after several upper respiratory track infections! Go figure! I had an appointment with my doctor for gallbladder pain and when I got to see him I also had pancreatic pain. He tried to figure it out, gave me all sorts of pain medications to try but the only thing that worked was methyprednisolone which I took for several weeks but had to stop because it started triggering my neuro symptoms. But it did help as the pain got more bearable. I still get it every couple of days. Seems to be linked to prolonged effort (physical and mental like working too many hours a day). Proper nutrition helps too but I can't seem to tolerate extremely healthy diets either! Every time I tried to eat very healthy in the past like eliminating gluten, sugar, or reducing the daily fat intake to 20g it actually made my symptoms worse. So I figured a balanced, diversified diet is the best and that's what I've been trying to stick to. That is until now when I do need to reduce fats.

One last question for you - after so many year of BD attacks on the pancreas, do you also have diabetis todeal with on top of everything?

Thanks a lot for your thoughts!

[Blearyeyed in reply to Lara1]

No, my husband has that one ( giggle!).

In seriousness, my Uncle has just had his pancreas removed, not a blood relation, and this has meant he has a more restricted diet than my husband because it causes a special Type Diabetes , which means along with injections , he also has to take tablets before every meal or even a cup of tea. He has also been diagnosed coeliac, the diabetes and gluten issues have grown over the last five years as his pancreatic function was reducing but no body checked it until recently when they found a growth around it.

I get the even a healthy diet giving you as much of an issue as another, by the time my gallbladder issues and pancreatic swelling got to its worst, even healthy foods with no or little fat caused me pain and swelling in my side for hours after I ate, constipation too, I only had high liver results once in hospital out of four emergency admissions, it was only after the fall bladder was removed that they noted a considerable number of stones in it, nothing to alarming showed up on x-rays , because it is fat blockages unlike kidney stones which do not necessarily show very visibly on ultrasound or x-ray having no bone or little mineral content .

Are you diagnosed Behcets? If so, ask your specialist about it , if it is affecting you with pain to such a level and affecting your pancreas too , despite medication and food changes , it is serious , you do not want constant inflammation from the gall bladder to affect the pancreas as its function is really important to a normal life.

If you want feel free to send me a private chat with email so I can help more if I can.

[OpsDave70 in reply to Lara1]

If your pancreatic enzymes are off, you might want to ask your doctor about Creon. It will replace missing pancreatic enzymes and make your digestion a whole lot better. If your pain is coming from your pancreas, it could indicate pancreatitis, which can be fatal. Is your doctor treating you for pancreatitis? I have pancreatic damage that’s suspected to have been caused by a BD attack. I had pancreatitis and it caused sudden weight loss - 35 pounds in about 60 days. Creon eases my symptoms, and I take Citracel twice daily to assist steady digestive system function. It took about a year to feel completely better, but I have permanent pancreatic damage and will be taking Creon for a long time to come. Creon is especially helpful with digesting fats, but if you’ve had pancreatitis, your cravings for fatty foods will diminish or disappear until the pancreatic inflammation has been gone for a while.

[NerdyChristina]

My gallbladder actually stopped working enough to technically be functioning. By the time they took it out they almost had to open my abdomen because gallbladder had begun dying. The surgeon and the pathology team didn’t even recognize it. We never really got an answer why. My birth control at the time was later linked to gallstones and disease but I was just 21 and it was ravaged. For now my pancreas seems to be fine, though it may not get as much blood as it would like. Something went wrong with my celiac artery so almost no blood goes through there. (Again it could be Behcet’s but we don’t know.)

[Lara1 in reply to NerdyChristina]

Was it painful before they got it out? Had anything shown up on ultrasound, MRI, etc before it was operated on? I don't manage to make doctors believe that it's painful when blood tests, ultrasoung etc. don't show anything. Apart from the pain I'm also afraid so much inflammation will eventually lead to biliary cirrhosis or worse.

[Blearyeyed in reply to Lara1]

Are you being seen by a specialist in Behcets?

They would hopefully be more responsive to the issues you are having and prescribe the right combination of meds to combat this inflammation.

There is a helpline you can call for the Behcets CoE in UK or email for advice.

Definitely try the green apples , cider vinegar, celery , turmeric and ginger combo if it doesn't cause you mouth ulcers , it was what kept me going with less pain until I had my gall bladder removed, they help cleanse the fats in the liver and gallbladder bladder,

My suggestion is to bypass the GP and go straight to A and E out of hours when you are in pain and have the most swelling, it was only by the doctors at the hospital seeing my swelling and pain that I finally got treated, unfortunately a little too late to save the blighter , but hopefully you may have caught the symptoms in time and be able to get the right help from the BD experts.

Take Care

[NerdyChristina in reply to Lara1]

Nope. All my scans were normal despite the seveee pain, vomiting, and weight loss. They sent me to psych for suspected eating disorders. Finally I got a new GI doctor and begged him to find something. He agreed it sounded like gallbladder attacks but without stones and because of my age, he doubted it. He agreed to do a function scan (ouch). They inject radioactive dye and wait to see how long your gallbladder takes to release. They had me walking around like I was in labor because they knew I’d gotten the dye but it wasn’t passing. I failed spectacularly with about 20% function of less. By the time they took it out six weeks later, I’d been on a morphine pump in the hospital, nearly had an emergency surgery, but had been sent home just days before the planned surgery.

Doc said they almost opened me because they were worried it was so dead it may fall apart. Thankfully they got it out but it extended the surgery and the recovery. I would ask for a function test, especially if you have family history or have taken certain birth control pills. Heck, the Behcet’s alone is a reason to look into it!

[NerdyChristina in reply to Lara1]

I had all normal testing until the HIDA scab (nuclear medicine test to check function) showed it was failing. We didn’t realize how fast. Surgery was scheduled for eight weeks later, within three I was admitted with a severe attack, and put on a morphine pump. I was sent home and had it out a week later once there was an opening. If I had another attack during that week they would have done it via emergency surgery.

When they got it out it was necrotic. They almost had to open me up because they couldn’t recognize it via the small scopes and once they did, they thought it may fall apart. Thankfully it didn’t fall apart haha.

I would insist on a functionality test. If GI won’t, ask rheumatology. Anyone can have gallbladder issues, even without stones

[Lara1 in reply to NerdyChristina]

Hi! You're totally right about having gallbladder issues without the stones. I actually think I had the HIDA test in 2014 - where I live it's called gallbladder scintigraphy. They injected a radioactive substance and they gave me something to drink which caused my gallbladder to contract. It contracted so badly that I was in horrible pain all through the test. Afterwards I had to go to my GP who gave me a cortisone injection and a Buscopan shot (anti-spasm medication). That's how I finally managed to get over it. The result of the test? "Nothing's wrong with your gallbladder!" I thought they were making fun of me but that's what the radiologist told me and what she wrote in the report. So the issue was closed. Fast forward to 2018 - the pain is still there (+ pancreatic pain), have changed doctors and had an MRI last week for both the gallbladder and pancreas and I'm waiting for the results. But if you could be in that much pain and have less than 20% function with nothing showing on any other test, it's really concerning. My pain has become more bearable and I don't have any vomiting. But I'm worried about the long term effects of chronic inflammation of the gallbladder and pancreas.

[Blearyeyed]

Have you had any more luck with your results?

How is it going pain wise?

Does you stomach / abdomen area get extreme cramp like pain just after eating and swell like a ball , then start to shrink after an hour?

Do you have that constant pain in your mid back on the right and under your rib cage?

Does this flare up your other symptoms?

Hope the diet changes are helping.

Lots of water and taking your anti reflux and buscopan before eating did help me.

Plus eventually I only ate small no fat portions about five times a day instead of big meals .

In the end the level of weight loss and the fact that I couldn't even cope with small portions , plus photos of how my body reacted to food made them decide it was better out than in.

My GI issues did reduce but I have still have alot of the pain and swelling , especially in flares, and have had another colonoscopy since. I think if you have digestive complications with your BD it is probably going to mean a very strict diet regime for good .

Let us know how your getting on.

[Lara1 in reply to Blearyeyed]

Hello,

I’m back one year later to report no improvement on the GI front.. In the meantime I’ve had a couple endoscopies, a colonoscopy, 2 courses of antibiotics to get rid of a helicobacter pylori infection and I took azathioprine for 2 weeks together with colchicine but had to stop because of worsening upper abdominal pain.. Aza helped with everything, my neuro symptoms, mouth ulcers, arthritis, etc. Everything but pancreatic and gallbladder pain!! It’s beyond me. The MRI I had last year seems to show slight inflammation in the tail of the pancreas but that’s about it. My doctors are stumped. They keep giving me anti spasm medication and probiotics which make the pain and the bloating worse. Food is not a trigger of a pain attack but can make one worse if I eat during one. Anything that stimulates immunity (ginger, probiotics, etc.) increases the pain. I so wished aza would work for this wretched symptom.. There’s got to be something that does but at this point none of my current doctors can help. Suggestions anyone?