Author Topic: Is it my liver, or is it inflammatory bowel disease?  (Read 990 times)

Carebear

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Is it my liver, or is it inflammatory bowel disease?
« on: June 18, 2019, 10:10:57 PM »
Two possible outcomes, dear friends.  Or is it possibly a third option behind door three?

I'm just here to complain in a safe place. Waiting for tests, their results, and then the appropriate specialist appointment, is more exhausting than the illness itself.

But I digress. This all began with night sweats that went on for nearly 20 days.  Chills and the feeling that my skin was crawling accompanied this.  I really felt like I was losing my marbles.  Then the diarrhea joined in.  Oh yeah!

Test results initially showed elevated ALP (alkaline phosphatase).  Retesting found the ALP continues to increase,  ferritin and iron are low, C-reactive protein is elevated, and white blood cells are low as they always are.

Night sweats are gone thankfully but the diarrhea continues.  I have discomfort around the belly button zone.  And I am bloated like crazy.

I have an ultrasound on my abdomen scheduled next week,  and then I see the GI specialist. 

Thanks for letting me vent.  No one else would very get it, like you guys do.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

araminta

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Re: Is it my liver, or is it inflammatory bowel disease?
« Reply #1 on: June 19, 2019, 03:56:38 AM »
Very sorry you are going through these problems. 

I'm not qualified to interpret those findings, but it's good that the doctors are on to this and that you are having the appropriate tests.

I know there's enough to contend with already just dealing with the usual Sjogrens symptoms, never mind anything else.   

Sending you a big hug.


Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

irish

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Re: Is it my liver, or is it inflammatory bowel disease?
« Reply #2 on: June 19, 2019, 09:43:23 PM »
I am just going to tell you what I have been dealing with for about 3 years. It started out with lots of gas, some bloating andsttols that would end up in diarrhea. Made even shopping hard. I am going to be specific here cause this stuff goes with sjogrens.

I would have large stools that often had some oily bile floating in toilet upon flushing. I had all the blood work and stool specs and nothing showed up. But it reminded me of my hubby who had celiac sprue which is malabsorption problems. My GI doc checked me for that and other things. Nada. However, she said that she thought I had some pancreatic enzyme insufficiency and ordered Creon which helps with absorption and some of these issues.

Time went on and soon I was having really horrible stools and gas that smelled like methane gas. Really foul. My diarrhea was precipitated, I believe, by antibiotics when I was in the hospital. I found some probiotics and started them and they seemed to help some. Back to the doctor and GI thinks I am having bile acid  diarrhea. This has several other names. One of them is "BAM" which stands for bile acid malabsorption. This involves the liver and gallbladder and the colon. There is info to read on these issues and it is all quite new and so complicated.

All I gleaned from it is that there is something going on in our body that causes the liver to kick out more bile and the gallbladder is storing the bile and then something else happens that dumps an overly large amount of bile into the large bowel. The bile irritated the colon so much that the diarrhea kicks in. I can feel when my gallbladder is being irritable and sort of gurgling, etc. I know there trouble coming before the day or even hours are up.

Now, there is a med for this and darned if it doesn't work. It is called Questran. If you look it up you will see the generic name. It is a powder that is given for high cholesterol. One of the first meds for cholesterol many years ago in maybe the 1960's or so. My order says to take one envelope 3  times a day. You mix in in orange juice if you want. It is orange flavored and I mix it in diet coke cause I am diabetic. The first diet coke I drank in decades. This has settled my gut down so much and I get by with 1/2 envelop morning and bedtime. It has tricky orders concerning when to take our meds which is a pain.

Now, I am not saying you have this, but do some googling and you will find a lot of info on this. It seems to be getting diagnosed more and more over the past 10 years or so. The interesting thing is I am curious just who is having this syndrome. I know that the liver is a secreting gland (bile) as is the pancreas (insulin and other enzymes) so this sure fits in the with Sjogrens issues. I have to shake my head in wonder at all the docs who still thing Sjogrens is dry eyes and dry mouth. Out whole body is affected. Good luck and keep us updated on what you find out. You could well give info that would change a lot of peoples lives around here. Irish
« Last Edit: June 20, 2019, 02:44:40 PM by irish »

Carebear

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Re: Is it my liver, or is it inflammatory bowel disease?
« Reply #3 on: June 20, 2019, 10:01:18 AM »
I appreciate this information, Irish.  When I visit my GI specialist I will be sure to mention this.  You know,  it is always my hope that the information I share can help someone else in a very small way.

I have had Celiac disease for 20 years now, but my doctor seems to think I could be eating gluten unknowingly.   I told her the last time I did that I ended up in the ER, so no way I'm eating gluten every day for the last two months.  I just don't think it's food related at all.

Oddly,  the diarrhea happens like clockwork, only in the morning now. Because I have been constipated since dinosaurs roamed the earth, this is something significant.  I continue to gain weight which is baffling too.  I can't even get that right!

Stay tuned...it may be another 10 days before I get more results.

Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

Linda196

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Re: Is it my liver, or is it inflammatory bowel disease?
« Reply #4 on: June 21, 2019, 03:12:17 AM »
Just a shot in the dark here, but do you eat dairy? And if so is it limited to breakfast? I know many people with Celiac or even Gluten intolerance can develop lactose issues as well.
Of course having dealt with Celiac for so long, you are probably already on top of that.

Just an additional note, elevated ALP can be associated with chronic inflammatory disease in some cases.
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irish

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Re: Is it my liver, or is it inflammatory bowel disease?
« Reply #5 on: June 21, 2019, 01:58:42 PM »
I don't eat much dairy as I use almond milk. I know that the foods I seem to have the most problem with at the high fat foods. I  have so many food aversions lately and so many of them have fat in them. I eat some cheese but they aren't as much lactose and it doesn't seem to bother me. Also, very small freezer on my fridge so noise cream is there. :(

Sorry to say that pizza and lazing are not on my list of favorite foods anymore. Hot dogs are another one that turn me off. You would think that I would get skinny but that doesn't happen. My colon is so much better than it was and I think that the probiotic I take really helped. If you do a lot of research you will come across articles on the relationship between BAM and probiotics,   pancreatic enzyme deficiency etc. I have been building up to this for about 3 years and I think the IV antibiotics put me over the edge.

I did a lot of research also ono othoe probiotics and checked out a lot of the different types of probiotics that live in our gut. I then stood in Walmart hanging on the cart for about an hour reading all the labels on the probiotics. I found the Spring Valley Women's Probiotic in a pink, yellow box with some green and black. The list of probiotics seemed to be ones that had specific jobs ion the colon. I lucked out cause they seemed to helps. Plus the Questran is good... it sort of binds with the bile and prevents the irritation of the colon.

My GI did a bunch of testing a couple of years ago and one was the breath test...can't remember what it is called. I have had 4 colon preps with 3 colonoscopies and one bullet that you swallow that takes pictures of GI track over i hours. I also had 2 different laser treatments of my large bowel in different areas. I am hoping that is enough of that for a while. Those AVMS seem to keep on bleeding periodically.

Linda, hope all is going well with you. I'm interested to know what your weather is doing up in the more northern country. Take care. Irish

Carebear

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Re: Is it my liver, or is it inflammatory bowel disease?
« Reply #6 on: June 21, 2019, 03:34:57 PM »
Hi Linda.  I thought that dairy may be the culprit too,  but my diarrhea usually begins before my feet hit the floor in the morning.  Before I've had anything to eat or drink.  I think I should use a food diary for the next week or two anyway, just in case it shines a light on something important.

Irish, you must miss your ice cream in the freezer.  I know how much you enjoy a bowl of the good stuff!
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

irish

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Re: Is it my liver, or is it inflammatory bowel disease?
« Reply #7 on: June 21, 2019, 10:35:29 PM »
I was going to Dairy Queen for awhile and had to quit cause Im too fat. I had wondered about the milk also but this has been going on for about 3 years and it never seemed to cause issues when I ate ice cream.

It is like I can feel hurling in my gut from too much bile being dumped into my colon. I also can tell by other aspects of this but it is too graphic to talk about. Too much Questran and I get constipated but pay attention to my food and the way my colon is acting and take some Questran when needed and it really helps.

And yes, I miss the ice cream. I have to figure out a way to make room for some ice cream. If I had heartburn or stomach pest over the years a little dish of ice cream always settled my stomach. Time will tell if that is still going to happen. Irish