Re: hey guys from W

[Guest guest]

Hey guys,

Haven't posted much lately but have tried to keep up with reading the posts.

Karyn,

Sorry to hear you are feeling so rough. I hope you get some relief soon.

I have not been feeling well the last few weeks. I've been to the ER twice

in the last week and a half. Thankfully, both times I have been treated

with kindness and compassion. The last time I went (Wednesday night) I had

my typical pain under the right rib and through to the back but I also had

pretty bad pain on the left side. This pain is sometimes more on the side

right at my waistline, sometimes kind of under the rib. It is different

from the normal pain on the right. It can sometimes be almost as bad as the

worst pain that Ihave on the right side but other times not as severe. It

also seems to come and go - just kind of sharp pains that can last anywhere

from just a couple of seconds to a few minutes, where the pain on the right

typically lasts anywhere from 20 minutes to several hours when I have a

severe attack. Also, the pain on the right is always there - just varies in

intensity but never goes away completely. I've had terrible trouble with my

stomach 'blowing up' as I call it. It becomes very swollen and hard and

looks like I am several months pregnant. When this happens I cannot stand

anything the least bit tight on my stomach. I seem to alternate from not

being able to go the bathroom at all to having totally blowout watery

diarrhea. Wednesday night at the ER, I began having diarrhea after I got

there and I was in the bathroom every five minutes (or less) for over an

hour.

I have not been diagnosed with CP (although three different surgeons have

said they believe I have CP). My GI just says I've had recurrent acute

pancreatitis. In January, I found out that I have autoimmune liver disease

(specifically autoimmune hepatitis (AIH)) and I am currently on prednisone

for that. I began having problems with blood sugar in October (three months

after the pancreatitis returned) and was diagnosed as a type 2 diabetic in

January. The prednisone really helps with that (NOT)! I believe that all

the bloating, going from severe constipation to severe diarrhea, and just

generally having my stomach not feel good are related to problems with the

pancreas and/or liver. My GI is basically non-chalant about all my

problems. When the GI told me about the AIH (revealed after he finally did

a liver biopsy, which my other doctors had started saying I needed four

months earlier) he acted like it was no big deal. He said the treatment was

prednisone and sometimes an immunosuppressant, Imuran. He told me that he

wanted me to wait a few more weeks before beginning treatment because I'd

just had hernia surgery 4 weeks earlier. He is letting my rheumy make the

decisions on the medication for the AIH because I have multiple autoimmune

diseases (I also have lupus and a clotting disorder-antiphospholipid

syndrome). I found out through research that without treatment, the 10 year

survival rate for AIH is only 10%. Thankfully, my rheumy is great and very

aggressive in treating me. However, she is not a GI.

I finally got fed up with my GI after my PCP called him last week to talk to

him about my continued problems and the new development of the left side

pain and terrible bloating. The GI said he didn't know what could be

causing it but he'd be happy to see me and see if he could come up with some

ideas. I told my PCP it was time to take the advice of a local general

surgeon and go to Vanderbilt in Nashville, TN. I have got an appointment

with Dr. Raiford, a hepatologist in Vandy's GI clinic, on May 6th.

His bio states that he is particularly interested in autoimmune liver

diseases. I am hoping he will also have enough experience with

pancreas/bile duct problems to put my whole picture together and give me

some answers.

Hope everyone has a wonderful Easter.

W