Re: IAN - Nausea and mild stomach cramps

[Guest guest]

Hi Ian,

Just curious, I noticed in your reply you have been sympton free for 19 years. If you don't mind answering a few questions for me:

1) Are there certain foods you eat every or at least very often?

2) Are there certain foods or types of food you never eat?

3) Do you take vitamins or any type of suppliments? For how long?

4) Do you take URSO or any type of medicines for any other ailments or health problems?

5) Do you drink a lot of water? What drinks do you avoid or drink often?

6) Do you excercise on a regular basis, if so what type?

Thanks!!

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

To: Sent: Sunday, November 30, 2008 2:50:47 PMSubject: Re: Nausea and mild stomach cramps

Hi Kistania,

Welcome to the group, we are sooy for your diagnosis, but happy that you found us. I also was diagnosed when I was 33, when they removed my gall bladder & bile ducts (outside the liver). The discomfort you are feeling maybe because your body is adjusting to being gall bladderless or it might possibly because bile is backing up because its having a hard time getting through narrowed bile ducts. Staying hydrated can help, Many of us find that URSO helps alot with bile flow and lowers our LFT numbers, but others in the group find URSO makes matters worst. We are all different, but we all can relate to each other and you someone here will have had the same symptoms before. Be encourage I've had PSC 19 years now, for the most part I am symptom free, and they are continously making advances

Ian (52) PSC 89

On 11/30/08, kristinamccook <kristinamccook@ yahoo.com> wrote:

Hi - I am 33 years old. I have had autoimmune hepatitis since I was 14. It went into remission when I was 15 and has stayed that way ever since. I was diagnosed with PSC a few weeks ago after having my gallbladder out. My surgeon noticed abnormal bile ducts and did an ERCP to confirm the diagnosis. I have been having bouts of nausea that come on in the evening and last for days. There is minor stomach cramping along with it and diarrhea. It comes and goes. I don't have much of an appetite. I spoke to my gastro's nurse and he said it was related to the foods I was eating and without a gallbladder I have to be careful. I am a healthy eater, vegetarian, not a lot of fat, no fried foods, etc. I have had 3 of these episodes. Once before my gallbladder was out and now 2 more times. I will admit one of them happened after eating mexican food:) The stomach problems are more like cramps and not like real

pain. They are also not focused in my URQ. The nausea is what is the real problem. No fever, chills or vomiting either. I am in the early stages of PSC without any real symptoms as of yet. I have not met with a hepatologist yet, but have an appointment. Does this sound familiar to anyone. I am wondering if it is the PSC or my lack of a gallbladder. .. Thanks for the help.-- Ian Cribb P.Eng.

[Guest guest]

Hi Lori,

I have been relatively symptom free, I rarely suffer itching or RUQ pain and its mild when I do, my bilrubim has been normal since diagnosis and I don't get jaundiced, but I have had several DVTs am now pernimately on blood thinners (which has eliminated DVTs) my thyroid had to be killed off and I take thyroid replacement drugs (I don't believe its related to PSC).

1.) I don't have anything special I take other than my medicines.

2.) I don't eat turnips (because I don't like them) I don't eat pork or seafood (not because of PSC, but because of my own personal understanding of the old testement)(although God told peter not to consider anything unclean, I figure he had a reason for telling people not to eat those things in the old testement)

3.) I was taking fish oil and Vitamin D earlier this year, but it didn't seem to make any difference one way or the other so I only take them when I think of it

4.) I'm taking 750mg of URSO per day (its a low dose since I'm over 200lbs), 4mg of warafin per day (blood thinner), 200 IU of synthyroid per day (thyroid replacement), and 5mg of Aricept (for calcium deposits on the brain).

5.) I don't drink excessive amounts of water, but I drink enough to stay well hydrated.

6.) I walk with my wife about twice a week about half an hour each time with the occasional longer walk (generally on level ground).

The only thing that appears to make a difference for me is URSO, when I tried stopping it me LFT #s went up right away. Beth Hunt's daughter has had amazing benifit by changing their diet and Hall's LFT #s went down after stopping URSO. Concusion: we are all different and we need to figure out what works for you (or your father). Sorry I don't have a miracal cure, I feel that I have just been blessed. I pray that your father will be too, (he is blessed to have such a caring daughter as you.

Ian

Hi Ian,

Just curious, I noticed in your reply you have been sympton free for 19 years. If you don't mind answering a few questions for me:

1) Are there certain foods you eat every or at least very often?

2) Are there certain foods or types of food you never eat?

3) Do you take vitamins or any type of suppliments? For how long?

4) Do you take URSO or any type of medicines for any other ailments or health problems?

5) Do you drink a lot of water? What drinks do you avoid or drink often?

6) Do you excercise on a regular basis, if so what type?

Thanks!!

Lori A.

" Aggressively Pursuing Solutions To Your Real Estate Needs! "

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

To:

Sent: Sunday, November 30, 2008 2:50:47 PMSubject: Re: Nausea and mild stomach cramps

Hi Kistania,

Welcome to the group, we are sooy for your diagnosis, but happy that you found us. I also was diagnosed when I was 33, when they removed my gall bladder & bile ducts (outside the liver). The discomfort you are feeling maybe because your body is adjusting to being gall bladderless or it might possibly because bile is backing up because its having a hard time getting through narrowed bile ducts. Staying hydrated can help, Many of us find that URSO helps alot with bile flow and lowers our LFT numbers, but others in the group find URSO makes matters worst. We are all different, but we all can relate to each other and you someone here will have had the same symptoms before. Be encourage I've had PSC 19 years now, for the most part I am symptom free, and they are continously making advances

Ian (52) PSC 89

On 11/30/08, kristinamccook <kristinamccook@ yahoo.com> wrote:

Hi - I am 33 years old. I have had autoimmune hepatitis since I was 14. It went into remission when I was 15 and has stayed that way ever since. I was diagnosed with PSC a few weeks ago after having my gallbladder out. My surgeon noticed abnormal bile ducts and did an

ERCP to confirm the diagnosis. I have been having bouts of nausea that come on in the evening and last for days. There is minor stomach cramping along with it and diarrhea. It comes and goes. I don't have much of an appetite. I spoke to my gastro's nurse and he

said it was related to the foods I was eating and without a gallbladder I have to be careful. I am a healthy eater, vegetarian, not a lot of fat, no fried foods, etc. I have had 3 of these episodes. Once before my gallbladder was out and now 2 more times.

I will admit one of them happened after eating mexican food:) The stomach problems are more like cramps and not like real pain. They are also not focused in my URQ. The nausea is what is the real problem. No fever, chills or vomiting either.

I am in the early stages of PSC without any real symptoms as of yet. I have not met with a hepatologist yet, but have an appointment. Does this sound familiar to anyone. I am wondering if it is the PSC or my lack of a gallbladder. .. Thanks for the help.

-- Ian Cribb P.Eng.

-- Ian Cribb P.Eng.