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Son's condition w/ulcerative colitis now auto immune hepatitis

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Posted 8/29/2008 3:34 PM (GMT 0)

I am new to this but maybe with your help we can get my son of 19 in better health.  He had diarea and lost 25 pounds and the first doctor said it was his thyroid so he is on thyroid medicine.  For 3 more months he still had diarea and bleeding so when we complained he sent us to a gastrologist and they gave him a scope and said he had ulcerative colitis and after the steroids they put him on Asacol, 6 pills a day plus the other doctor still has him taking the thyroid medicine.  4 weeks ago he had a terrible pain on his left side that doubled him over.  After a blood test and over a week end the pain went to his right side.  The med. doctor said his spleen was bad then when the pain moved he said we'd better get a liver specialist.  I called the gastrologist and he wanted a liver byopsy.  They said that he has auto immune hepatitis.  They put him back on the steroids and the pain went away.  He finished the recommended amount and the pain came back.  He went back on the steriods but they make him break out and his personality is different.  They are recommending a new drug called Inuran but I am afraid of the side effects and the fact that it is an immune suppressent.  Does anyone know why they aren't trying to fix the liver instead of suppressing his immune system?

He is a person that wouldn't even take an aspiran unless it was the worst.  Now he has 8 pills a day that he has to take. 

I am having him try a foot detox that they do here in town but I don't know whether it will help or not but it is worth a try. 

If you would have any helpful information for him please let us know.

Thank you,

Motorcycle Mama

Posted 8/29/2008 10:24 PM (GMT 0)

Welcome, Motorcycle Mama.  I'm so sorry that your son's illness has brought you here.  There are several people who post here who have autoimmune hepatitis.  Hopefully, they will see your post and give you some replies.  I know that they have been, or are, on steroids.

Did the doctor who prescribed thyroid medication do a thyroid test first?

I hope you will get some answers to your questions.

Connie

Posted 8/30/2008 1:57 AM (GMT 0)

Hi,  I have autoimmune Hep. also.  Got real sick about 1 1/2 years ago.  Turned yellow and felt like crap.  My alt was 955 and my ast was 550.

I was put on pred. 60 mg per day, and gradually tapered off.  I am now at 5mg per day.  Yes, pred is a really hard drug, when I was on 60mg I was hallucinating and having terrible nightmares.  And it made me temporarily "drug induced diabetic".  It does also change your personality.

I tried Imuran, but I thought at the time it made me worse, but now I am not really sure about that, as the pred had made me diabetic, and I felt like crap.

  I went for a liver biopsy in May of this year, and to my shock and horror I was told I have severe liver damage and will need a transplant within 5 years.  Apparently, I had AIH for a long time, but was never properly diagnosed.  I have found since that it is possible to have normal liver enzyme counts and still have a bad liver,  who knew?  I am going to U of Miami in Sept to be evaluated and I guess put on the list.

I would suggest your son goes to a GI who specializes in Diseases of the liver, and get check out fully, including a liver biopsy.  I hope this helps.

Didn't mean to scare you, but AIH is very serious.

Take care,

Rhonda

Posted 8/30/2008 4:08 AM (GMT 0)
Hello Motorcycle Mama. I just wanted to welcome you to HealingWell. You have found the right forum as we are full of the most wonderful people as you can see in Connie and Rhonda. I am sorry that your son has this awful disease. It's hard enough when it's your spouse but when it's your child ....adult or not it must be 10 times harder.

I don't know a lot about auto immune hep but I do know that it can get ugly just like any of the other liver diseases.

As Connie said we do have some good educational posts here that one of our dear members put together in layman's terms so it would make it easier for members to understand. So if you have time please go over them.

You are alone.....there's many of us who have been there or still there.

My thoughts and prayers will be with you and your son.............
Posted 8/30/2008 8:10 PM (GMT 0)

Connie

Thank you for you welcome and response.  The doctor gave him a blood test and an ultrasound to find out why he had diarhea.  All he said was that his thyroid was off a little and gave him the thyroid pills.  Is that the thyroid test you are talking about?

Thanks again,

Motorcycle Mama

Posted 8/30/2008 8:57 PM (GMT 0)

Yes, the doctor would be able to determine hypothyroidism (underactive thyroid) through a blood test.  An ultrasound would show enlargement or nodes of the thyroid.

Hugs,

Connie

Posted 8/30/2008 9:12 PM (GMT 0)

Rhonda

Thanks so much for your response.  After the gastrologist told us the side effects on the medicine that he wanted Eric on I told him I wanted a second opinion from a liver specialist.  The doctor he had me see is also a gastrologist.  Are they liver specialists?  Erics first # was 844 then it went down but that was when he had the ulcerative collititis and the doctor put him on steroids then it went down.  I got upset with our family doctor for not seeing this before so I've asked for copies of the blood work.  I haven't gotten them yet. 

Eric is on 10 mg for the next 10 days then they want to put him on the Inuran.  I seen a posting about Inuran giving people headaches or sinus pressure.  Did you experience any of this?

Have you tried any of this detox that I had talked about earlier?  I don't know if it will work or not but it might be worth a try.

My prayers are with you and keep in touch with me on how you are doing. 

Pink Grandma

Thank you for your support.  I appreciate everyones help.  It is good knowing that we are not alone.

Thank you all,

Motorcycle Mama

Posted 8/31/2008 3:24 AM (GMT 0)

Rhonda, I just wanted to respond to your question about a gastroenterologist ("gastrologist"), also known as a GI doc.  They specialize in the digestive system, including stomach, esophagus, spleen, pancreas, gall bladder, and liver.  A liver specialist is a hepatologist, and their practice is limited to diseases of the liver.  In seeking a second opinion, I personally would go to a hepatologist (if one is available in your area), rather than another GI doc.  wink

Hugs,

Connie


Post Edited (hep93) : 8/30/2008 9:27:28 PM (GMT-6)

Posted 8/31/2008 3:56 AM (GMT 0)

Connie, thank you so much.  I didn't know what they were called and since the guy didn't even take any tests but used what the GI doctor had made me question the diagnosis.  Thanks to for the spelling I appreciate it since I am new at this.

Hugs back at ya,

Motorcycle Mama

Posted 8/31/2008 4:35 AM (GMT 0)

You're very welcome, MM.  :-)

Hugs,

Connie

Posted 9/2/2008 10:02 AM (GMT 0)
Motorcycle Mama

I too have AIH and crohn's disease and take medications for them including imuran. I have been on prednisone for nearly three years now and have taken imuran for nearly one year. During the first thirty days of taking imuran i had some of the side effects that the medication causes, fatigue, achiness in my joints, and hair loss. However they did subside following that initial period and have not had any more problems with the medication. The purpose of taking another immune suppressant with the prednisone is to be able to reduce of discontinue the use of the steriod, due to its many long term complications. I know that this is so scary for you with your son being so young. I have heard that this diseases usually start somewhere in your twenties and for most of us just not discovered until a much later time. Hopefully, they will be able to get this under control and in remission for your son now before a lot of damage is done.

Good Luck to you and your family

Lucy
Posted 9/2/2008 12:47 PM (GMT 0)
Lucy

Thank you for your response and concern. I really appreciate it. The more information I get the better off we will be.

Has anyone heard of a Ionic Foot Detox? This is to remove toxins from your body and to make it healthier.

I am wondering why the doctor is slowing down the immune system when it is the liver that is the problem? Isn't there anything that can be done to help the liver function properly? Sorry sometimes I ramble on about this.

Thank you again for you input. My prayers are with you and hang in there and the support and information really helps.

Sincerely,

Motorcycle Mama
Posted 9/2/2008 6:36 PM (GMT 0)
Motorcycle Mama

With autoimmune hep (AIH) your son's immune system is overactive and believes that his liver is somethng that is to be attacked. That is why they give the medications to suppress the immune system and keep it from attacking organ's, tissues, or joints. The liver is what is being attacked by the immune system and that is what is causing the problems. I hope that helps answer some of your question. There are several sites that have some information regarding autoimmune hep, one is the american liver foundation. You should google autoimmune hep and try and get some more information so that you can be prepared to ask quesitions of the doctor. In some cases with immune suppresants they have been able to successful get the disease in remission and stop any further liver damage. Unfortunately in my case that has not been true, however I am many years older than your son and probably have had this for a long time without detection. In some ways in it a good thing that they have discovered this so early for him.

I so not have any information regarding ionic foot detox.

Hope this helped answer your question.

Lucy
Posted 9/2/2008 8:58 PM (GMT 0)

Hi Motorcycle Momma!  Welcome to our support group.

I too have AIH.  I was diagnosed in Jan 2007.  I am currently on 5mg of prednisone and 50mg of Imuran daily.  Others have posted why he NEEDS, I stress needs, to be on immunosuppression.  That's what will help control any further liver damage.  If it is possible, I would also recommend seeing a hepatologist.  If it isn't possible, then try to find a gastroenterologist who has some specific liver expertise.

As far as foot detox goes...I don't believe you will find any 'cure/treatment' using alternative medicine.  Maybe that kind of thing works for migraine, stress, etc...but you are talking about an autoimmune disorder.  Being in the medical research field, only modern medicine will help that.

Don't be afraid of the side effects.  It can seem super scary, we've all been there.  The body does get used to the imuran and if he can't take it for reasons others have had, there's Cell Cept which is fantastic.  Initially, I was on prednisone (with the effects others have mentioned; hyperactivity, irritability, insomnia, acne...) and the immunosuppressant I started on was Cell Cept as I needed something quick acting.  Imuran takes 2 months to 'kick-in' so once I was stable they piggy-backed the 2 and I stopped the Cell Cept.  I did have some hair loss with the Imuran at first but not horrible, just noticed more in my brush.  Now I'm fine and no one would know anything were wrong with me except they ask why I can't drink.  Stress that to your son with him being a teen...NO DRINKING!!!!

Good luck and take care.

Posted 9/5/2008 1:13 AM (GMT 0)
Dany

Thank you for your suggestions. I really appreciate the input. It really helps with all of this support.

Thanks again,
Motorcycle Mama
Posted 9/5/2008 1:18 AM (GMT 0)
Lucy

My son goes to college and with his immune system being suppressed won't he catch cold and the flu easier now while on this?

Thanks for your help,
Motorcycle Mama
Posted 9/6/2008 4:48 AM (GMT 0)

Motorcycle mama,

Wow..your son and i are almost twins.  I also have thyroid disease (hypothyroidism to be exact), ulcerative colitis, and autoimmune hepatitis.  I actually have one more disease called Addison's disease.  And the one thing that should definitely be noted is the fact that all three of these conditions (four for me) that your son has are IMMUNE DISEASES.  They are due to an overactive immune system which is why we are placed on immunosuppresants.  Immunosuppresants such as prednisone and Imuran suppress the immune system so that it stops acting crazy. I currently take Imuran and I love the medication (compared to Prednisone). I have zero side effects with this medication as opposed to Prednisone.  I have been on this medicine since I was 12/13 years old and I am currently 26.  The first time I was placed on Prednisone (when i first got sick) I ended up getting bleeding ulcers.  Make sure that while on the prednisone that the dr. has your son on some type of antacids-like zantac or prilosec. These are over the counter as well.  This will just help in reducing acidity in the stomach.  From time to time, Ive had to be placed on prednisone for a short while when liver enzymes decide to rise.  This is because prednisone works fast and is i guess a quick fix to control things.  Then I am weened off and imuran continues to be my immunosuppresant.  Prednisone has bad long term side effects and most doctors dont like to keep their patients on this medicine longer than they have to.

I also see a gastroenterolgist.  This dr is important for your son and I because they take care of the large intestine AND the liver.  The dr that i see for my thyroid and addisons disease is called an endocrinologist (they control hormone disorders).  Another dr that may be of interest to you and your son is a rheumotologist.  These doctors study the immunology of many autoimmune disorders. 

Well hopefully i was able to share some helpful information with you and if you would liek to ask anymore questions, id be happy to answer.  good luck to you and be positive (thats how ive managed so far....and no liver transplant!) 

Posted 9/6/2008 11:08 AM (GMT 0)
Mototcycle Mama

Yes it is possible that your son could catch colds, etc than normal while on immune suppresants, however I really haven't had any more colds, flu. etc than I nromally did and I work primarily with young children. He should talk to his doc's about getting flu shots or possible pneumonia shot if they are available to him. I know that some of the live vaccines my doctor told me not to get as it would cause illness. It just takes a little precaution not to be around people that are obviously feverish and ill. I also cary hand sanitaizer with me, but I would do that without taking the medications.

Hope this helps.

Lucy
Posted 9/6/2008 11:30 AM (GMT 0)
Hello Dany, Lucy,Rhonda and Teacher24. Just wanted to thank you all for your informative posts about AIH.
With each different form of Hepatitis we have our resident members who share their knowledge unselfishly.
Once again this forum is so great because of members like you guys. Just wanted you to know how much you are appreciated.

And Connie there's no words for you that could adequately describe how valuable you are to this forum.

So thank you all from the bottom of my heart. :-)
Posted 9/6/2008 2:02 PM (GMT 0)
Thank you for all of this information. What is your display name for my son's twin that is 26? You all have helped me and Eric understand this disease so much better then the Dr. we have talked to. Some have stated the Imuran might cause hair loss and even though Eric is 19 he has very thin hair and it worries me that he might get bald spots. Is there anything that he could do to help to either keep his hair or make it come back in if he looses it?

I say a prayer for all of you everyday. To us you are all blessings in disquise. Your communications are all greatly appreciated.

Thank you,
Motorcycle Mama
Posted 9/6/2008 5:43 PM (GMT 0)

PG, thank you for your kind words.  I'm blushing.  cool    If my experience, knowledge, and hope can help someone else, then what I've been through has been worth it.   :-)

Hugs,

Connie

Posted 9/6/2008 9:15 PM (GMT 0)
Dear Motorcycle Mama: You've received some great advice on this forum. I was just diagnosed with AIH on Tuesday by one of the country's leading hepatologists who heads up the Vanderbilt Hospital liver transplant center. I have been dealing with trying to find a definitive diagnosis since April of this year. They still really aren't sure if it's auto-immune--there weren't enough "classic" symptoms, but we had to go ahead and start treatment (with 40 mg of prednisone and 50 mg of Imuran each day)of my liver to prevent further scarring. That's why you need to get your son's liver under control. The scarring leads to cirhossis, which destroys your liver. He is too young to be thinking about liver transplants and so forth. My advice echos some of what you've already heard: He should take the prednisone and imuran as directed by the doctor. This will get the inflammation down. Yes, the imuran will suppress his immune system, and he will be susceptible to colds, etc. He should stay away from sick people and he should keep his hands clean and not touch his eyes, nose, ears, mouth, etc until he has disinfected them! Don't kiss any germy girls! Don't eat or drink after ANYONE! This is very important. It is hard for a 19-year old to realize how serious this disease is. The liver detox foot thing is hype. It will not help him at all. Look it up on-line and they will tell you how the reflexologists and so forth make the water turn dark when you put your feet in the bath. Don't waste your money or your time. I researched this in my desperation, so I know. He needs to quit taking any medicine of any kind unless given to him by the doc who is treating his AIH. No over the counter meds, nothing!! No alcohol whatsoever. His liver is in crisis. Too bad about his hair--his liver health is more important. Hair will grow back, or he can shave his head and look really cool. Don't take any medicine for hair loss!!! Don't waste money on hair loss products. He will have side effects from the drugs, but he doesn't have to take them forever. He is young and should be able to bounce back from this a lot quicker than someone like me (59 years old, healthy until this happened!). I think you or the doc should let him know how serious this is. His life depends on his mature handling of this condition. You can't watch him every second, but he MUST take his meds, he must stay away from germs, he must eat healthy (no fatty, fried foods!), not drink booze, get his blood tested and get involved in the management of his disease. If you want a second opinion, go to a hepatologist--they aren't in every city--I had to drive from Knoxville to Nashville to see one. BUT, you probably don't need a second opinion if the liver biopsy was definite about the AIH. A regular GI doc can handle that. My GI doc here in Knoxville sent me to the hepatologist in Nashville because the liver biopsy did not show AIH and HE wanted a second opinion! I don't have all the symptoms of AIH. My only "bad" thing is ALT and AST levels that are now in the 500 range (but at the beginning, they were in the 5000 range!) and this is causing inflammation in my liver and scarring--not good. So, this is your final lecture of the day. You are on a good forum for information on this condition, because we've all been through it and can help each other. As you can tell, the prednisone has made me a very "talkative" person. By 11 a.m. this morning, I had already cleaned my entire house, done four loads of laundry and was trying to decide if I had time to build a fire pit in the back yard. It does make you hyper and busy busy busy. Good luck and keep us posted!!

Posted 9/6/2008 9:50 PM (GMT 0)
Hello Sweetmama and a BIG welcome to HealingWell.

WOW what a great first post. I am certain that you will come out on top with this awful disease. smilewinkgrin

Do you think you can come to my house and help me pack? I should be moving next weekend. I didn't realize that extra energy was one of the side effects of prednisone.

Why don't you start a new thread and introduce yourself to everyone. You are going to fit right in.

Have a great day..........thoughts and prayers.........
Posted 9/6/2008 11:18 PM (GMT 0)
Sweet Mama, I agree with PG--that's a terrific first post!  Welcome to the forum and please post often, so others can benefit from you experience.

I have hep C and cirrhosis, and am post resection of the right lobe of my liver due to cancer.  I have NO energy most of the time.  So you can come on over here and clean out my closets if you have excess energy!  smilewinkgrin

PG, with Prednisone, it's more of a "hyper" state, rather than real energy.  My friend's husband lost 50 lbs. in a month, just from pacing, when he was on Pred.  smhair    I have a psychotic reaction to it myself.

Hugs,

Connie

Posted 9/6/2008 11:20 PM (GMT 0)
Welcome to the forum Sweetmama. Thanks for the info. My husband suffers from hep C and cirrhosis, not AIH, but it will be very helpful for a lot of the other members here. On second thought it is very helpful for people with any type of liver disease as far as not taking medication that is not prescibed, eating healthy, and avoiding alcohol. Thanks again.
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