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Posted 7/29/2010 5:54 AM (GMT 0)
Can anyone tell me if autoimmune hepatitis accompanies crohns disease anywhere else in the world I have been told by experts that people with crohns disease may also have AIH.
Posted 7/29/2010 11:59 AM (GMT 0)
Hi Milkthistle, I don't know a whole lot about crohns but, if it is an autoimmune disease, I do know once a person develops 1 autoimmune disease that the chances goes up to develop another. Have you read through some of the posts on the crohn's forum?

Take care...........
Posted 8/2/2010 5:22 PM (GMT 0)
I know that there are a few liver issues that can arise from any IBD...I have one too...Crohn's especially can attack any part of the body, and really likes to attack organs in the digestive tract (pancreas liver)...and they can be called different things depending on what part of the liver (or other organ) the disease attacks...some people get PBC, others get AIH (which is what you have) and still another, PSC (which is what I have)...

Alas, Pink Grandma, there is not a lot on the Crohn's forums about the liver issues (hence why I lurk here)...it is still considered rare to have this as a complication...so I read here, cuz the issues that I deal with (in addition to my horrible crohn's) are similar...as I try and differentiate the two...like I get some godawful itching (mine is mostly on my head, but on my feet and hands too) and the swelling...

Oh, liver complications are actually more common with UC...and there ARE a couple of people on the UC forum that have some liver issues too...so you might ask there...I did when I was first Dx'd with PSC...
Posted 8/2/2010 6:41 PM (GMT 0)

Welcome to the forum, Becoming Undone.  Thanks for your input.  So sorry to hear you are dealing with both Crohn's and liver disease.  What is PSC?  Some type of cirrhosis, I'm guessing?

Hugs,

Connie

Posted 8/2/2010 6:51 PM (GMT 0)
Primary sclerosing cholangitis (wiki article: en.wikipedia.org/wiki/Primary_sclerosing_cholangitis)
I am lucky that we caught it early...and not needing a transplant (or to be on a list) as yet...it does scare the beejeezers out of me though...not to mention the pain...who knew your liver could hurt so much (yeah I know you're not supposed to feel it, but I guess when it's not happy, it lets you know...)
Posted 8/2/2010 8:37 PM (GMT 0)

Thanks for the definition, Becoming.  I don't have liver pain, but some do.

Hugs,

Connie

Posted 8/8/2010 2:41 PM (GMT 0)
Hi everyone.

I'm from the UK and it is quite well known that crohns IS an autimmune condition and also once you have one condition it is more likely that you will develop a second or even a third. It is not a given but just more likely.

I have 2 conditions. I have AIH and hypothyroidism. Both are autoimmune conditions and fortunately the thyroid doesn't really give me any problems. It is controlled by 150mcg levothyroxine. My AIH is controlled by prednisolone (down to 6mg daily at the moment) and 6mp (mercaptopurine) 50mg at moment.

Yes unfortunately I am 1 of those that suffer liver pain amongst all the other aches and pains that accompanies AIH along with the itching and extreme tiredness. But heyho thats life and I deal with it best I can and try to live a normal life with a good diet and taking my drugs as prescrbed. I think thats the best we can all do.

Hope you get sorted soon milkthistle

JP51

 

Posted 11/11/2010 6:18 PM (GMT 0)
I have just been diagnosed with AIH. I have had Crohn's since 1992 and hypothroidism for years as well. I am at a loss as to why the treatment for AIH is so primative. At least w/crohns you have a choice of newly marketed drugs, Humira for example, which worked wonders for me. But now that I have AIH they took me off Humira. I don't know what to expect now. Also, I have had horrific back pain for the last year or so and don't know if it is related to the AIH. If so, what type of pain meds are we AIH'ers allowed to take? Any restrictions? (Other than tylenol). It is rare, so I understand it, that a person develops AIH; but because we are already genetically predispositioned, it is more common for us autoimmune dysfunctionals. I do not look forward to the onslaught of steroids and 6-mp. I did that for years with crohn's and it didn't work. I am fearful it won't work with the AIH as well. Any suggestions or helpful hints?
Posted 11/11/2010 11:06 PM (GMT 0)

What's up, welcome to the forum.  I am very sorry that you have been diagnosed with AIH on top of your Crohn's.  I would like to ask you to copy and paste your post into a new thread.  Give it the title of Recently Diagnosed AIH.  (Click on New Topic instead of Reply.)  That way it will be seen and you will get more answers.  We have several people posting here who have AIH and can give you some good informaton regarding it.

Hugs,

Connie

Posted 11/12/2010 2:59 AM (GMT 0)
What's up,

Autoimmune disorders generally travel in packs...unfortunately.  So having one predisposes you to acquiring others.  Most people end up having 2 or more.  I have AIH only at the moment.  I too have liver pain.  They can't sort it out so it's just something you get used to.  It isn't too bad, just a sharp stabbing thing occasionally and pressure other times.  I am in remission and only on Imuran.

Did they say why they took you off the Humira?  Is it more toxic to the liver than other remedies?  Don't randomly take any pain relief without first speaking with your hepatologist.  You are seeing a hepatologist for your AIH, correct?  If not, you should ask for a refferal to one.  Don't drink alcohol anymore either.  Before taking any OTC it is best to check with your hepatologist as well.

As per the "primative" AIH treatments...steroids are used initally to reduce the inflammation caused by the body attacking the liver.  Then immunosuppressants are added as steroid-sparing agents and to suppress the immune system to avoid future attacks/flares.  It is a rare disease so it doesn't have the research backing that RA, MS, Crohn's and other more popular diseases have.  So they work with what they have and that is to treat us similarly to transplant patients as the end result is the same.  Some AIH'ers of late who have issues with the pred have been introduced to Entocort (Budesonide)...you could always speak to your doc about that one.

Hope that helps a bit,

 

Posted 11/14/2010 8:22 PM (GMT 0)
what wonderful additions to the Forum... welcome... Sandi
Posted 11/22/2010 11:08 AM (GMT 0)
I have crohns and AIH. I take azathioprine and am supposed to take pentasa(but recently discontinued this as I am plagued by the nausea and headaches and joint pains, which I know can be Crohns related as well.) I take Milkthistle and Vitamin D and Zinc. My specialist is aware of this. I keep in good health and now rarely experience Joint pains and muscles pains. All the best.
Posted 1/17/2011 10:48 PM (GMT 0)
Hi all, I've had AIH since 2004, have been in remission for 3 whole years (with azathioprine).  For about a year now I've been sufffering with lower left side, back and abdo pain.  My GP sent me for an ultrasound for kidneys but I'm beginning to think it's Crohns...I've always had an irritable bowel, mucus, some blood and loose stools but now I get this cramping about an hour after meals which can last 3-4 hours and is joined with hot flushes, nausea and more loose stools.  I don't like to tell GPs their job, but what else could it be? Would Crohn's have shown up on a kidney & bladder ultrasound?

Keep well everyone tongue

Posted 1/17/2011 11:37 PM (GMT 0)
Hello Mazmackey and welcome to HealingWell. So sorry that you have so many health issues.

Your question "Would Crohn's have shown up on a kidney & bladder ultrasound?" Would probably be answered best on our Crohn's forum. I know that I don't have a clue.

Our moderator Dany can probably answer any questions about AIH herself as she has been dealing with for a number of years herself.

Take care.........
Posted 1/17/2011 11:51 PM (GMT 0)
Mazmackey, welcome.  I suggest you ask your GP for a referral to a gastroenterologist (GI doc.)  That specialist would be better suited to diagnose and treat you.

Posted 1/18/2011 3:01 AM (GMT 0)
Mazmackey,

Welcome to HW!  Have you seen your hepatologist about your newer issues?  Hepatologists are GI docs with a fellowship in liver diseases so that would likely be your best approach.  Do you see a hepatologist for your AIH?  Have you talked to your GP about your gallbladder?  If your having issues shortly after eating, that may be your problem.  Gallbladders cause a lot of referred pain...so the pain ends up other places (but generally shoulder blade area) and it gets tricky figuring out what the problem is.  Was your ultrasound a general abdominal one?  That would have shown your kidneys as well and they would have made note of any changes in your spleen or liver too.  I do think seeing your GI or hep doc would be your best bet and giving a full description as you did here in regards to changes in stool and pain.  How often do you have your labs checked?  I wouldn't just jump on it being Crohn's as it could be IBD which you've already said you think you have an irritable bowel.

So did it take you a long time to get into remission if you've only been in remission for 3 years or had you been in remission and had a flare 3 yrs ago?  I was diagnosed 4 years ago tomorrow, actually.  Knock on wood, I haven't had a flare and responded to the steroids right away.  Fully stopped the pred in Dec '08 and been on aza only since then.  I also take ursodiol as my bili crept up fall of '09 and the hep doc wanted to decrease my dose but I didn't want to risk a flare so I suggested Urso to thin my bile as he suspected cholestasis due to aza....that worked so that's where I'm at now.  My numbers are remarkable so fingers crossed it stays that way!!

Posted 1/20/2011 9:01 PM (GMT 0)
Mazmakey...I'll go ahead and answer about finding crohn's on an ultrasound...no, not usually dx'd that way...usually colonoscopy, blood tests, CT scans, and whole host of other techniques...you probably should try and get in to see a GI doctor...

Ultrasound IS good for checking for stones and the general size of the liver (I had this done, and nope, no stones, just a pretty big liver from disease)...but I had a whole slew of tests done to determine my dx...CT, MRCP, and was finally done with enhanced ERCP at which time I also had a strictureplasty and a stent put in my common bile duct...

My GI put me on entocort primarily because my liver was causing a lot of issues...it was incredible, the itching that had been plaguing me for months, causing me to wake and not rest, all but disappeared and the liver pain dramatically declined...woohooo!

DGinnSD, I'm also on Ursodiol to help thin the bile too...I'm hoping to keep my liver for as long as possible...
Posted 1/20/2011 9:32 PM (GMT 0)
Becoming Undone, thanks for the information you posted.  Good to hear that you are doing well now.

Hugs,

Connie

Posted 1/23/2011 3:17 AM (GMT 0)
Hi to everyone on this thread. Wish the medical world would get to the bottom of autoimmune stuff. The diagnosis seems so hit and miss so much of the time, but maybe that's because I'm new to all of this. The treatments often seem as bad as the diseases too. I hope everyone gets answers and tolerable solutions.

Becoming Undone, were you diagnosed with AIH or something else?

hana
Posted 1/23/2011 7:23 AM (GMT 0)
Becoming Undone was diagnosed with PSC: primary schlerosiing cholangitis. I believe this is also an autoimmune disease.

Hugs,
Connie
Posted 1/31/2011 12:37 AM (GMT 0)
Yup hep93 you are correct...PSC is an auto immune liver issue, and is what I have...there are a few, depending on where the inflammation is...for instance PBC, is in the billiary channels, AIH tends to be more wide spread (yet the symptoms are a bit more controllable, though not always)...

not sure why they would take someone off Humira...but maybe Humira has more heptatoxic effects than other biologics...I've been on Cimzia for a few years and 2x the standard dosing right after my PSC dx (in the hopes to get the inflammation down a bit and keep my liver for a few more years)

Liver pain is increasing again...URGH!!!!! as is the itching, but nowhere near as bad as before, at least it's not waking me up in the middle of the night...
Posted 1/31/2011 1:09 AM (GMT 0)

Good to hear from you, BU.  Hang in there!

Hugs,

Connie

Posted 7/28/2011 8:07 PM (GMT 0)
Hi everyone.

"what´s up.." I think i know why you had to stop with Humira. I have got psoriasisartritis for about 15 years and crohn and i was treated with Remicade, also an TNF-alfamedication as Humira. The treatment with Remicade triggered my liver so i got AIH as well. Perhaps your GP were afraid that humira would worse it.
After been treated with prednisolone for some month and put on klorokinfosfat my doktor tested Humira insted of Remicade and it works well for my Psa but not for the crohn. So know I´m testing leukocytapheresis and so far it seems to be working fine, I gives me hope again.
turn

Post Edited (this-to-shall-pass) : 7/28/2011 2:12:04 PM (GMT-6)

Posted 7/28/2011 9:29 PM (GMT 0)
Hi, Thistoo.  Nice to see you again, though you picked up on an old thread.  Good luck with your new med and try to post more often!

Hugs,

Connie

 

Posted 7/29/2011 9:29 AM (GMT 0)
Hi again
It´s the first time i´m here. IS there another "this-to-shall-pass"? idea I´ll be signing with "abroad" smilewinkgrin as that is what i am.
As i joined late last night ( our time) i haven´t read everything yet.
I´ve searched for bloggs about the diseases I´ve got but there aren´t many where there is as much activity as i think you have here.
So my spellings and expressions isn´t the best. Hope it´s ok anyway.

"abroad"

Post Edited (this-to-shall-pass) : 7/29/2011 5:32:06 AM (GMT-6)

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