# IBS-C, large liver hemangiomas, no gallbladder



## Prevent2 (Apr 28, 2014)

I am new to this group. I have been searching for years for a support group of individuals who have similar issues. Several years ago I began having severe right upper quadrant pain, at the time they found several hemangiomas on my liver but said nothing was wrong with my gallbladder. After years of bloating, gas, pain, pressure, and bowel problems no matter what I ate pain continued to get worse. Last year I had emergency gall bladder surgery as it was only functioning at 12%. Once again I have had to modify my diet due to not having the gallbladder, however, other symptoms have still lingered. After having several tests done to check for Celiac, Chron's, Ulcerative Colitis, Lupus, the normal blood count work up, endoscopy, colonoscopy, upper GI, etc. GI doctor says it is IBS-C. And that I have a hiatal hernia.

I have tried every diet imaginable... low FOODMAP, Gluten-free, Vegan, etc. I am seeing an alternative med doctor to try and get some relief. Taking digestive enzyme, acidophilus, probiotic and Vitamin D every day.

After seeing doctors at several major hospitals, the only thing they can tell me is that my liver hemangiomas have grown and are quite large and should be removed. Which involves taking part of my liver. However, the doctors still feel as though the liver hemangiomas are not related to my digestive/ bowel issues.

Nothing seems to be working to give me any relief. Is there anyone out there who has the same or similar symptoms and conditions that I have?

This condition has taken over my life and every day is a challenge as to what to eat, what not to eat, etc.


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## Kathleen M. (Nov 16, 1999)

The symptoms do sound more bowel than liver, and usually we don't hear a lot about the liver directly causing stuff in the bowel and then it going away when the liver is fixed.

I also don't know that any pain from the liver would coordinate with the meals as bowel pain is known to do (because the colon gets more active after meals). I suppose the masses could contribute to some bloating so that may help, but the colon and IBS can do plenty of bloating all by itself so it doesn't have to be.

A lot of the time with pain after meals with IBS it is more how you eat than what you eat. Smaller, leaner (which you like do after the gall bladder anyway) and more frequent meals sometimes helps limit the pain as the colon gets a lot more active after a big, rich, fatty meal when you skipped a meal or two before hand.


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## Prevent2 (Apr 28, 2014)

Yes, I have found that eating small frequent meals works better for me. It is still strange to me how I can eat a certain food for awhile and then suddenly it does not digest well. I have terrible pain and pressure that pushes up in to the upper part of my abdomin and feels like it is pushing all the way into my chest. Tonight is one of those nights.

I have tried a few meds my GI suggested, but they make things worse.. either worsening constipation or diarrhea.... it's like there is no happy medium. I eat a very lean diet and really watch my fats due to not having a gallbladder. But again, nothing seems to work for an extended period of time. Does anyone have a diet plan / food plan that has worked.

What about homeopathic treatment? Therapy? What has worked for others out there who have this? I don't want to just pop a pill and cover up what is going on inside me.

Any suggestions?


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## Kathleen M. (Nov 16, 1999)

You might look at the low fodmap diet.

Sometimes digestive enzymes with pancreatin in them (so not the all papaya or vegetarian ones) taken at the start of a meal can help with bloating.

I did CBT for my IBS (cog. behav. therapy) and it did me a world of good. Clinical hypnotherapy seems to be more widely available.


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## Prevent2 (Apr 28, 2014)

Thanks Kathleen M.

I have been thinking about trying some type of therapy. I have tried the low foodmap diet. It seems that I have to take a bit from each type of diet and tweek it to see what works best for me. Still in the trial and error stages as far as my diet. What worked last month suddenly doesn't work this month.

Have you tried Aloe Juice? I've read that it can help, but I don't want it to send me running to the bathroom all day, especially while I am at work.


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## Nojokeibs (Apr 14, 2014)

I mix my diets a lot too. It isn't as hard as I thought it would be, but it took up nearly all my free time when I was starting out, and I made many mistakes. Take it slow and you'll find your way. My diet became a kind of Atkins/SCD/FODMAP mixture. Though I have to say that I soak all nuts and make my own nut flour. Phytates are not a good food. It's a big time investment, but I love to cook, so I've no worries.

Someone I discovered years ago and though was a little odd, but over time I've come to respect her more and more is Dr. Sandra Cabot. She specifically talks about the liver and bowel and I have this book of hers:

http://shop.liverdoctor.com/the-healthy-liver-and-bowel-book.html


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## Prevent2 (Apr 28, 2014)

HI nojokeibs,

Thanks for the advice. It helps to know that others are out there dealing with the same issues. And thanks for the link about the book and the doctor.

I have a lot of trouble with beans, nuts and grains. All things I used to be able to eat occasionally about a year or two ago but I don't even think about having even a small portion now.


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## Nojokeibs (Apr 14, 2014)

You're welcome 

My rules for those foods are:

beans - must be fermented with yeast and yogurt to eat up the oligosaccharides... the yeast is needed for raffinose... then cooked.

grains - no wheat, others must be fermented except rice (white rice is what I stick to)

nuts - these contain phytates, so I soak them just as I did when I was trying the raw vegan diet, then slip off the skins, and dry them, then grind them. It's my usual weekend project because I make a lot of breads from nut flour and mashed potato or overcooked white rice.

My latest experiment is a sourdough bread made with a variety of non-wheat flours, including some beans. It hasn't been perfected yet. If I do perfect it I'll post it.

I never drink the ferment water or liquid for any food that I expect could cause trouble. I don't want to populate my body with bugs that generate gas whenever I eat that food. That's my current thinking on the matter. Some diets like GAPS really focus on taking in the live bacteria communities, but I'm not sure it's wise. I guess everyone has a theory on that. My family always cooked the sauerkraut before eating it, so I'm taking my cue from tradition.


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## Prevent2 (Apr 28, 2014)

It seems as though cooked vegetables work best for me. I was eating tapioca bread, rice cakes and cream of rice a few times a week, but lately that seems to be causing bloating,, pain and pressure. Also had been able to eat coconut milk ice cream and now that seems to be causing pain and bloating. I seem to do better

Still trying to figure out what will get my bowels moving on a regular basis. Taking Phillips caplets at night, but that is not helping.

I tried an egg a month or so ago...........not a good idea, then tried a small amount of organic plain yogurt......... again not a good idea.

Coconut milk yogurt seems to do ok. I am going to try and do some creative baking with rice flour and coconut flour.

Any suggestions for recipes??


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## Nojokeibs (Apr 14, 2014)

Hmm, that might be a hard one. Not because it's a bad combo, actually it's a great combination. But because people have fixed ideas about food. The Paleos won't touch rice, and Coconut flour isn't used by SCD (too much fiber). Ditto for reasons why low-carb people wouldn't go for it, because rice is a carb. So you may have to create a new recipe over a weekend.

I'd probably start with this one..

http://alldayidreamaboutfood.com/2013/02/chocolate-chocolate-chip-pancakes-low-carb-and-gluten-free.html

I often start with a pancake recipe and modify it with drying and structuring ingredients to make it more bready. Those are often proteins. Do you know if you can tolerate egg whites without the yolks? Or the reverse? Try a small piece of an egg white or yolk scramble and you'll be able to see. Space the tests out over several days though. Fried egg freezes well. If egg whites are ok, then those are best.

If it's zero eggs, then using flax well is a skill in itself. I personally soak it and let the gel form in the water, then strain it. Many people who don't have a problem with fiber just leave it unstrained. I use hot water to soak it for at least 10 minutes, often as much as 30. Then I use it so that I have twice as much liquid as I would if I had beaten eggs. The gel should be quite thick, and actually if you want to, you could beat it into a foam like egg whites. However, unlike egg white, flax will moisten a dough and keep it moist. It is not a protein, it's a mucopolysaccharide gel.

Here are some more tips on how to use coconut flour effectively, and maybe some other recipes from those pages will lead you to a basis for experimentation:

http://jeanetteshealthyliving.com/2013/03/12-tips-for-baking-with-coconut-flour.html

I like this as a resource for bread making, except, substitute the rice for almond flour:

http://authoritynutrition.com/15-low-carb-bread-recipes/

When you make that sub, it might come out awesome, but if not, consider that there is some extra fat and protein in the almond flour. Not to mention phytates which bind up the minerals. One reason I think it's better to make sourdough (there are instructions on how to make easy yogurt sourdough starter with a simple google), is that the FODMAPS get eaten up, and the phytates are destroyed during fermentation. Then you bake it and very few bugs make it alive into your gut. But Paleos, etc, tend to use baking soda or powder (contains cornstarch!), and that isn't going to do much for the phytates in the nut flour. If anything the mineral based baking powders will be deactivated by the nut flour. So the bread comes out flat. Rice is a much better idea I think.

Lately I've been considering adding quinoa to my bread because of the nice profile of starch/protein. It is however, a grain that not everyone tolerates.


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## Prevent2 (Apr 28, 2014)

Oddly, egg whites were doing fine with me, but when I tried them a few weeks ago they did not digest well at all. I haven' tried just the yolk, so maybe I will try that and see what happens.

Thanks for all the tips and the links. I am so glad I found you on and this site/blog. I have been searching for years for others who can relate to all these digestive issues.

Have you tried Aloe Juice? I have read mixed things about it. I want to give it a try, but am nervous about the side effects.


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## Nojokeibs (Apr 14, 2014)

Glad to help 

I haven't tried Aloe juice yet. But I do have some in the fridge that I bought literally this week. It also contains those elusive mucopolysaccharides, and often at least a little aloin The aloin can cause cramps, but for me, I seek out bitter aloes anyway as a motility supplement when I am backed up. Usually some colon cleanse kit or other contains it. So I'm not too worried about aloe myself. I think maybe people think it has zero aloin, which would be impossible, and they might get cramps from it. I also heard that it has bad effects if you have confirmed Crohn's disease, but I didn't go into heavy detail about that. On SCD, you don't introduce aloe until after some gut healing has taken place.


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## Prevent2 (Apr 28, 2014)

My GI doctor says I don't have Crohn's disease based on my colonoscopy. My homeopathic doctor suggested I try the Aloe, so I think I will give it a try this weekend since I know I will be close to home.

I seem to be having a lot of trouble with sugars and yeast, so I am trying to eliminate them from my diet to see if that helps with the pressure, bloating and constipation. Watching the amount and type of fruits I eat and only cooked veggies that are on the low foodMAP diet.

And thinking since the coconut flour has a lot of fiber, maybe baking some things using that will help?


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## JMH91 (Apr 16, 2014)

Are people normally have severe D, not C, after gallbladder removed, which I presume is almost the same as functioning for 12%?

http://en.wikipedia.org/wiki/Postcholecystectomy_syndrome


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## Prevent2 (Apr 28, 2014)

Nojokeibs

I recognized the picture but couldn't remember where it was from. It's been years since I've been to the Museum in Philadelphia, but an interesting place to visit.

Thanks for all of your info. I am still in the beginning stages of trying to figure out all this and still have no answers as to what exactly caused my ibs. I suspect I have had it my whole life, since I have had bowel issues ever since I can remember, but I have been able to eat whatever I wanted up until about two years ago then almost everything caused problems. Now I am learning to modify my diet, but it has been a challenge.

I continue to see a GI doctor, homeopathic doctor and liver specialist for my liver hemangiomas that keep growing. The IBS-C has caused other issues, like piles and that has been another challenge. But, from what I have read on others postings this seem to occur a lot with IBS-C.

I take a daily digestive enzyme capsule, acidophillus tablet, probiotic and drink a homeopathic mixture of Vitamins. My dr has suggested that I also take Vitamin D capsules daily and said I should be taking 20,000 Units... this seems like a lot to me ??


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## Prevent2 (Apr 28, 2014)

JMH91

Shortly after my gallbladder surgery I had loose stools and D; but after about 2 months that stopped. Now I have C, which is what I have dealt with off and on for years, but it has gotten much worse.


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## Nojokeibs (Apr 14, 2014)

About the vitamin D, my doctor gave me 25,000 IU once a week, and I know someone who has that prescription for the rest of her life. I started going to a tanning salon as it had many more positive effects (mood effects too) than just he Vitamin D alone. I now take 5000 IU whenever I remember, which is a couple times a week. There are naturopathic doctors or chiropractors, or even functional medicine doctors who will do a full work up of every single vitamin and how it's doing. Just be sure you know whether the vitamin is outside the actual reference range, or outside the optimal range. It's an important distinction. I get that done every 5 years or so just to see where I'm at. I wish regular doctors would do it, but I guess I'm glad it exists anyway.


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## Prevent2 (Apr 28, 2014)

The homeopathic dr I see is a Functional Endocrinologist and Chiropractor. She did a ton of blood work when I first met with her which ruled out a lot of things, thank goodness. But many things seem to keep circling back to my liver hemangiomas. Trying to figure out how to get my liver issue better while getting my digestive system straightened out seems to be a challenge.

Do you have or know anyone who deals with yeast/bacterial overgrowth? And not having a gallbladder? Seems like some of the things I can tolerate without having a gallbladder cause havoc with my digestive system. Gluten Free has helped but too much pasta, rice cakes, etc. make my constipation much worse, which is why I am trying to make things with coconut flour and cook with coconut oil and olive oil.

The medications I've tried have either given me diarrhea or made the constipation worse, so I have stopped taking all prescription medication. The big issue seems to be trying to keep my bowels moving on a regular basis and I can't seem to find anything that works. I'd like to find foods that will help and not give me gas and bloating more than I already have.

Plain, bland foods seem to be my go to food right now.


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## Nojokeibs (Apr 14, 2014)

I'm not sure what to tell you. I mean, if you tried FODMAP and it didn't help you, then the only thing left is Elimination diet. That's a bear, but it might be your only option if all other diets have failed you. FODMAP is the one that specifically reduces bloating.


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## Prevent2 (Apr 28, 2014)

Thanks. I am keeping a food diary, so I'll try to be more diligent about writing down every little detail and see if I can find out what might be causing continued problems.


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## Prevent2 (Apr 28, 2014)

Oh, one other question to those out there............. Has anyone had a correlation with having an acute case of Lyme's Disease and then a few years later developing IBS-C ??


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## Nojokeibs (Apr 14, 2014)

So in trying to help out, I was reading about gallbladder removal. Actually have a neighbor and a stepson who had this done, so it's not out of my orbit to look into it. I found this to be helpful first:

http://ibs.about.com/od/relatedconditions/a/IBS-After-Gallbladder-Removal.htm

Just cogitating about this as I am not a doctor and I don't have personal experience. It seems odd to me that they would say to eat less fat when your liver is directly releasing bile now. I would think you'd need to up the fat to give that bile something to do. Also it occurred to me that psyllium used to be famous for soaking up bile (get a powder if you try it, the flakes are nasty). But it is an insoluble fiber so if you have difficulty with that, then be cautious. Some innovative bread recipes call for some small amount of psyllium as a portion of the total flour used. It might be that all fibers soak up bile, but I'm not sure if it's soluble or insoluble that helps. Psyllium has both.

It does seem to be associated with ongoing IBS though. Interesting.


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## Kathleen M. (Nov 16, 1999)

The more fat you eat the more bile your liver produces. The more bile your liver produces (especially when it now releases it all the time full stop no storing it up for later in proportion to what you just ate) the more likely you are to get more bile out than the lower end of your small intestine can recycle.

Eating more and more fat every couple of hours in the hope you won't have any bile left over to recycle ends up being a very messy and losing proposition. You just make more bile after the meal which all gets released which means more and more and more and more fat and I dunno if most people would burn off that many calories in a day, either.

So basically the problem is the bile you make is to fill up the storage, not for the food now, but if you have no storage you just dump whatever you make after that batch of food is gone, and trying to catch up to that doesn't seem to work, where preventing any major increases in bile production does.

Psyllium usually is more soluble then insoluble (most everything has both) or at least that was what I remember...maybe they changed that..., but it is highly fermentable and that usually is what causes IBSers problems.


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## Nojokeibs (Apr 14, 2014)

Yes I suppose the question is, is this a dysbiosis issue in which case any fiber, not just soluble fiber is not that great or is this simply a too much bile issue? I don't think anyone here can answer that.

Psyllium's first claim to fame was from the "lowering cholesterol" gang who noticed that it caused bile to be excreted instead of reabsorbed into the body... which, the theory went, would force the body to make more bile, using up the cholesterol so your cholestreol level drops. That's what brought it to mind. I think that other fiber types also do that, because soon after that discovery, Cheerios was claiming the same thing.

Personally, it constipates me unless I use very small amounts, but it does give a sense of well-being if I use it right. Ultimately, I decided it was too tricky.

About calories, I don't have an issue losing weight on a Keto diet, so I'm convinced the "fat makes you fat" theory is a myth. But that's not something that can be proven. Only time will hash that out.


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