SIBO, Pancreatitis, or what the heck?Sibo Pancreatitis Steatorrhea Constipation Loose bowel movement Pain Gas Odour Fatigue Nausea
Posted 01 December 2017 - 04:28 PM
My story is long and complicated, but Ill try and explain it as simply as possible. Im really in need of some advice - desperate in fact.
Ive had ibs for about 9 years, but had it under control with fodmap free diet and exercise. I would have the odd day of trapped gas and pain, but not much else.
Jump to September 2016, I developed a severe anal fissure (awful) that had me on pain meds (morphine and NSAIDS) on and off for a few months until I finally had surgery in April. After that, my digestive system has never been the same. I had horrible pain daily under my ribs and in my left side, as well as constipation. My gp put me on a months course of rifaximin suspecting sibo (I was nevertheless tested) and boom I felt better...for maybe 3 weeks. Then the real hell started. Since then, Ill have one or two ok days where I feel somewhat normal, maybe a little nauseous. But then I have 2-3 bad days - this means a weird constipated diarrhea where I feel constipated but pass loose (pretty much liquid) stool intermittently. My gas goes from nonexistent to copious and foul smelling overnight. My stomach is bloated and distended, and I have immense fatigue and dizziness, sometimes headaches, loss of appetite and nausea. My bowel movements are VERY oily/greasy (have to clean the bowl after...sorry for the details).
I have been on an extremely low carb diet and it seems to help very slightly with the gas, but not enough. I also dont consume dairy or fodmaps (pretty much just chicken breast, few cooked veg, peanut butter and almond flour muffins).
Out of desperation, my doctor put me on flagyl for two weeks (largely in case I had undetected giardia). I felt super nauseous on the meds and still had loose bms, but they were not greasy, and the other symptoms (gas, smell, pain) cleared up. I felt AWESOME for a week after stopping the flagyl - I forgot what it was like to feel so good and have so much energy. But now - about 10 days after stopping them - my symptoms have all returned.
The real kicker is that I cant get in to see a gastroenterologist. I had a full endoscopy, colonoscopy, and small bowel mri around December 2016 (BEFORE all these weird symptoms started) with my previous gastroenterologist. I wont get into the details, but I had to stop seeing him due to inappropriate conduct (to be frank, it was traumatic and horrible) - but now whenever my gp tries to refer me to a new gastroenterologist they just say no and tell me to go back to my previous gastro. They assume Im fine because of the fairly recent all clear tests.
My research now has me looking at reasons why I may be malabsorbing fats - does anyone else have a similar problem? Ive read that both antibiotics and some antidepressants can cause chronic Pancreatitis, which could result in many of my symptoms. SIBO could also be a culprit - but I would think that all the antibiotics would have knocked it out completely - could rifixamin actually have caused SIBO? Doesnt seem likely.
Anyways, if anyone at all has any advice or support I would appreciate it so much. My gp is chalking it all up to ibs - but having suffered ibs for so long I know these symptoms are out of the ordinary. Im absolutely desperate - im not able to work or go to school at the moment, and my overall health has deteriorated dramatically. I have seen my life disappear over the past year and a half - its takig a toll on my mental health as well.
Thanks for reading and for your help.
Posted 03 December 2017 - 05:47 PM
Posted 03 December 2017 - 06:17 PM
If your instincts are that you are not digesting/absorbing fats, then you should consider some type of biliary (bile) issue. I've found that well made salads with well made salad dressings trigger healthy biliary (bile) flow. Include lots of Olive Oil and sufficient acid (lemon juice and vinegar) in the dressing. The combo of fat and acid helps to trigger bile flow.
Posted 03 December 2017 - 07:36 PM
Posted 04 December 2017 - 08:33 AM
Hi - Here is a link which I just quickly scanned, and thought it had alot of solid ideas for improving bile flow, and also just good ideas for digestive health in general. A few years back I watched a few videos from the guy behind the website ,Dr. Jockers (a chiropractic Doctor and not a Medical Doctor), and got the sense that he was really bright and really knew alot. You could take a look at some of these suggestions, and see if any might apply to you. Dr. Jockers is very passionate about what he does, and seems to love helping people. Good luck. https://drjockers.co...bladder-health/
Posted 10 December 2017 - 02:03 PM
Thanks for the link, but I think this issue is beyond what I can deal with without medical intervention. I've been progressively getting worse since taking flagyl. I have severe gas - i'm talking 15 second long flatulence every few minutes. I look 6 months pregnant. I have tons of pain and discomfort from the gas. When I pass gas I feel relief for maybe 2 minutes, then it's back. I ate only chicken breast for two days and symptoms did not improve. I've also gained several pounds in the fast few days despite eating next to nothing. It could be because I feel constipated - I have small but extremely loose/liquid greasy bms in the morning, and it seems like I pass less and less each day.
I'm at a loss, and my doctor is at a loss. I'm thinking on going back to try a different antibiotic...I only seem well when i'm taking one. At the same time, i'm petrified of making whatever this is worse....but also I can't go on like this. I'm unable to leave the house, barely have energy to get out of bed, and becoming severely depressed. I'm thinking on maybe asking for two different types at once - like rifaximin and neomycin, and maybe a prokinetic, in case of hard to treat SIBO.
Trying to figure out what the HECK is going on, and my hunch is some seriously severe SIBO. Other options i've considered - chronic pancreatitis, giardia, some weird form of C diff?
Anyone ANYONE have a similar experience? Any ideas of what I can ask my doctor to give me to help me until I can see a gastro? I need these symptoms to let up soon. And I mean NEED, i've been pretty much housebound for nearly a year and a half for one painful reason or another. Please help if you can, I really need a helping hand.
Thanks so much
Posted 10 December 2017 - 05:07 PM
Hi again. I was worried about you. My only new thought is this. I personally don't think that SIBO is really a disease. I think it is a disease that Doctors made up and gave a label to. This is what I mean. When the digestive system is flowing nicely, you don't get dysbiosis and bacterial back-up into the small intestine (SIBO). In my opinion (and I COULD BE WRONG) is that if you have SIBO, you really just need to focus on improving your digestion. What that means for you, I'm not too sure. I'm hard at work on this as well. Many have this problem. But I think once you get your digestion improved, the SIBO will resolve, and not the other way around. Make sure you salt your food appropriately, and eat spices if you are able to. Both salt and spice help ward off bad bacteria.
Posted 13 December 2017 - 09:16 AM
I read your post and joined the forum so I could reply! It does sound like horrendous SIBO. It often comes back quickly if not treated properly. Did your doc recommend a MMC stimulator or any particular diet? Unless they are naturopathically trained I doubt it. You need to find a Functional Medicine doctor who will treat you properly: https://www.ifm.org/...a-practitioner/
In the meantime, try an ox bile capsule or two before meals - also sounds like a bit of fat intolerance from pancreatic insufficiency which ox bile would help with. Look on Amazon. You could also try a broader digestive enzyme supplement like Enzymedica. You may need to take more than the recommended dose.
Good luck, I know how much this ruins your life. It can be beaten, just not by regular doctors usually x
- ♧Pandora☆ likes this
Posted 13 December 2017 - 11:47 AM
Posted 15 December 2017 - 12:37 PM
Diogenes, my doctor has me on a low carb diet - i eat mostly chicken breast, homemade almond flour crackers, some homemade fodmap free chicken soup, not much else at this point.
I have made an appointment with a naturopathic doctor in my area who specializes in sibo. I saw a functional medicine practitioner before but did not have a good experience.
I already take digestive enzymes but perhaps I will increase the dose and try the bile also. Thank-you.
I started an extra strength refrigerated probiotic with lactobacillus and bifidum species a few days ago, and it may be helping very slightly - but now my bms are all over the place, constipation one day and diarrhea the next - still greasy/floating and visible oil in the boil.
Ive also noticed that I have to urinate with great frequency. This started maybe 3 weeks ago. I urinate around 15 times daily, it is clear normally, although Im not drinking more than usual (or enough probably, I already feel so bloated its not appetizing). I dismissed the frequent urination at first, but its persisted so now thats another symptom to add to the list.
Thanks again for the support. I will keep this board updated in case it helps someone else. And if anyone has any more advice it is greatly appreciated.
- ♧Pandora☆ likes this
Posted 15 December 2017 - 02:38 PM
My fmp is so good at what she does. She saved my life.
I had tests it covered bacteria, fungi, parasites, adrenal, liver, kidney, pancreas, thyroid, heaving metals, parasites, hydration, detox, enzymes levles.
Basically everything so they knew what to investigate further with more tests.
What healthy fats do you eat ? You didn't list any except almonds,(peanuts are not good when sick).
What if you get fatty acid deficiency by eating to little healthy fats.
If you eat hardly any carbs or healthy fats then why take digestive enzymes. Amylase breaks down carbs, lipase breaks down fats.
If you got ibs or even sibo highly likely you have reasons for having them like leaky gut, food intolerances, parasites or low stomach acid etc.
Sibo normally has a root cause.
Very Restricted diets are not good they lead to nutritional deficiencies which then causes even more symptoms.
I had a food intolerance test so i knew exactly what i couldn't eat so no food could ferment.
And also so i knew what i could eat.
I had a variety of foods on my healing plan.
Thats not good if your weeing that much.
I would see a gp and get checked for things like Diabetes insipidus, infections, kidney function etc,
Good luck and hope you find answers☃
Posted 15 December 2017 - 02:45 PM
I do eat some peanut butter, eggs in the crackers. Almond flour is high in fat. I wish I could eat a greater variety of foods but everything just seems to make me feel worse, and I hardly feel like eating at all as it is. Despite the restricted diet - havent lost much weight. Which is good but also very strange.
The frequent urination definitely warrants a doctors visit, but unless I go to an emergency clinic I cannot see my doctor until early January.
Thanks for the lists of tests - I will make note.
Hemorrhoid/past fissure now also acting up, which is scary for me - I had a HORRID chronic fissure for almost a year that required surgery and months of recovery until I felt back to normal (ish). I was taking morphine at that time which I think started all of this bowel trouble. At one point I didnt have a bm for about a week and a half - needless to say it slowed down my system big time.
Posted 11 July 2018 - 04:28 AM
How are you doing lately? Any updates to your condition, have the Dr's found anything yet?