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I'm like a car whos warranty just ran out I'm like a car whos warranty just ran out

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Unread 01-20-2003, 02:27 PM
I'm like a car whos warranty just ran out

Well gals...you haven't seen much of me. Dunno if that's good or bad for you all, but was bad for me.

In the last 3 weeks, I've seen 8 different doctors and had several tests done.

About six months ago, I began to have more pain than before. The pain meds less effective. 3 months ago...it began getting intolerable again. To the point I was actually considering surgery. Which is what every high priced doc told me not to do!

However, 2 weeks ago, I was doubled over in pain even on pain medication. Every time my tummy was pressed, I screamed. I had a low grade fever, chills, and was well.... etc.

Off to the castle we charged... gall stones, possible appendicitis, and are you ready for this: possible pancreatitis.

I've seen two surgeons and can't tell which I like better. The first scared the heck out of me and is very young but wants to block off a whole day to take a look at my messed up insides.

The other one is older kind of galant, very reassuring, and says it'll all be ok but he doesn't know beans bout FMS or RSD.

I don't know what to do.

I called Memphis doc who said, "Sorry kid, I won't touch you for that". I can't blame him.

What would you all do?

I took ALOT of antibiotics so I can have the stones removed. Saw my OCMD who did accupunture and gee whiz did the stones pass - not pleasant. But they tell me this will reoccur. The diet is not pleasant either but the weight sure is gone - no bread, caffiene, sugar, cholesterol, or fat - except 2 tblsp of olive oil per day. The rest is fruit juice and some actual fruit.

Geez, I'm a fruit after all of this.

Any suggestions?
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Unread 01-20-2003, 03:33 PM
I'm like a car whos warranty just ran out

Gosh (((Angie))) it's good to see you posting, but I wish it were under different circumstances... I'm sorry you're having such a rough time!

Have the symptoms let up or are you still in as much pain as a couple of weeks ago? I've got to say, given everything you've been through, I'd be real hesitant to jump into another OR... I guess I would be looking for yet another opinion here.

I know what you mean about turning into a fruit and losing weight... a friend of mine had gall bladder surgery and went on that diet, and the last time I saw him I didn't even recognize him at first!

I wish I had some answers for you... I hope it's enough to know that we're here holding your hand while you figure this out.
Unread 01-20-2003, 04:19 PM
Thanks Surferbabe

I contacted 3 pelvic surgeons who said, "No way!". I saw two gastro-surgeons who said, "Ok". That's the two I listed above - but they both admitted they don't know what FMS, Endo, or RSD *IS*.

I'm seeing my health care coordinator tomorrow. Geez, I just can't catch a break.

My pain has eased off since seeing the OCMD (for which the younger surgeon reamed me out - he said under no circumstances would he recommend "passing stones" or "special diets" just for that purpose because he'd, "Seen so many young people die of pancreatitis created from blockages from gall stones".

Ok, I was ready to skip out completely after that.

But the OCMD really DID help me. It may be temporary, but dang it...I'm up and around today where as for the last 2 weeks forget about it! I was like a turtle on my back....when awake.

The pain is much better. I'm just weak from the weight loss....and all the pain I went through the last 2 weeks. The diet makes food pass VERY quickly if you know what I mean. So that in itself weakens you...but I admit, I'd rather do that if it really is safe than hop right into the OR. My little voice is screaming , "No!" to surgery. And, I figure China has 5,000 years on their side, yes?

However, my body is getting desperate for answers. I see a doc tomorrow who may be able to help...I hope so.
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Unread 01-20-2003, 06:55 PM
I hope this new doc helps soon

I've read quite a few of your archived posts and I admire your research skills and tenacity.

I too have been reamed for doing OCMD but ya know what? The herbs kept me out of the operating room twice for perinanal abscesses. Don't know what was in this witch's brew, gagged it down and the abcesses resolved, no incision and drainage, no IV antibiotics, no 23-hour observation, no general anesthesia, and even better, no pain. Western medicine, all they wanted to do is slice and dice. And because they didn't understand it, it had to be evil. I still keep the herbs around just in case.

Maybe in fifty years, integrative medicine will be taught in every medical school. I had a great osteopath that turned me on to OCMD. Unfortunately, that doc ended up taking bankrupcy and is working in an ER doing medicine the way she hates the most to satisfy the courts.
Unread 01-20-2003, 09:03 PM
I'm like a car whos warranty just ran out

Adrite, I by no means am telling you what to do here, but pancreatitis is very serious!!!! Please do not take it lightly! You are a very knowlegeable person so please get more opinions if you need to. I wish you luck tomorrow. I can't imagine the pain you must have had. Please keep us informed.....I am worried about you.

Emily s
Unread 01-20-2003, 10:07 PM
You must be so tired of all this

I can only imagine how you keep going, Adrite. It is so draining to talk to doctor after doctor after doctor. Then to weigh what each one says. You certainly are being faced with challenges. And I certainly have no suggestions, only empathy and admiration.

Sorry you've been suffering again.

Unread 01-21-2003, 12:04 AM
I'm like a car whos warranty just ran out


I vote with Emily: pancreatitis is nothing to mess with, and can make you even sicker than you've been! Sure, the diet will help some, but the moment you eat anything OFF the risks go right back up. And a blocked common bile duct from stones can be life-threatening as well.

A couple of questions for you: are they able to consider lithotripsy for the stones? or snaring them under fluoroscopic guidance? And, if you do have to have the gall bladder removed (gotta admit, it's probably got to go ), can they do it laparscopically with some sort of barrier and possibly steroids to help with inflammation?

I kept hoping that we'd not heard from you because of the holidays, etc. I'm so sorry that this is going on! And you've had so much stress that those stress hormones must be working overtime.

I wish we could do more for you, sweetie. I would consider the diet and manipulation just temporary measures, though...while you gather up strength for whatever lies ahead.

I know what you mean about wanting to do anything but surgery...I'm facing the same thing with some herniated discs in my neck, and trying to do whatever I can to postpone the inevitable and live with the pain...

Unread 01-21-2003, 01:27 AM
I'm like a car whos warranty just ran out

I had pancreatitis 14 yrs ago, I DO know the pain and it's agony, I came to love the morphine shots, they stopped me crawling round the bed in a delerium.

My gall stones weren't picked up on because I was only 29 and considered too young (ha ha) I turned yellow, the stones were blocking all the bile ducts and I was jaundiced, Dr said I'd got hepatitis!

Finally a med student sussed what was going on, sent me for a scan which confirmed it, tech said there were too many to count, he got to 50 and gave up. Unfortunately, this being UK and the land of long waiting lists, and despite a diet which was not just low fat but no fat (lost masses of weight) I got pancreatitis and had to be rushed to hosp -you do know it's life threatening?

I was pretty out of it for a week between meds and pain. They sent me home for a week as it was too inflamed to operate, then I went back in and had to have it removed conventionally as the stones were all over and so now I have a big scar from sternum to belly button.

However, it was the best thing I had done, I was in such pain for months and had frequent bouts of vomiting. I'm OK now, just have to lay off the fatty food and have occasional bouts of IBS type symptoms.

I would urge you to stick with it and get treatment, as if this is pancreatitis you can't mess about. I know you don't want more surgery, but if it has to be done......

I agree with Emily too, you need some answers and soon.
Big s
Unread 01-21-2003, 05:29 AM
I'm like a car whos warranty just ran out

my friend, I'm so worried about you! Who were the Surgeons? They werent at SMC, were they? Have you seen Dr Bearteau yet? Does he have any suggestions? A friend of mines Father was dx'd with Pancreaitis about 4 months ago, he was told his was a Chronic form, they treat the pain, no surgery but he is a long-time Alcoholic.... Gosh, I wish 1 of those Drs wouldve removed that darn Appendix of yours during one of your many surgeries! I feel your fear & dont know what I would do if I was face with this There has been so much we've learned about surgeries & the damage they do but if it's life-threatening you dont have a choice. Laprascopic surgery would definately be the best route, for you, if possible.

I'm assuming what you have is acute? I'm just digging here for any helpful, *POSITIVE* info/treatment...My prayers are with you Angie Please call me & I will be more than happy to go with you to your Dr appts or whatever.....(((hugs)))
Unread 01-21-2003, 07:31 AM
Thank you all so very much...

I've been at my wits end and on my rear end for the past 12 days. Today is the BIG day when I see my "health care coordinator and pain therapist" you all will remember me referring to him as "Miracle worker doc".

When this first happened, I did have fever, EXTREMELY rapid pulse, and vomiting/diarrhea, and low blood pressure is normal for me (80/60 to 60/40). The pain is what tipped me off that something was really, really wrong.

I went to my GP - the only place I could get in - and had to see an RN there. She pressed on my tummy and I came unwound. I couldn't stop crying. She sent me straight away to the ultrasound people who said, "See this: You're gall bladder is inflammed and all that white stuff is stones". The reporter also told me that my organs were inflammed. Which one's, I don't know but it felt like all of them.

They put me on the 4th round of antibiotics that I've been on in 3 months. My regular GP thought it was just gastritis cause unknown.

They told me before they could do anything that the inflammation would go down - thus the two week bed rest. The pain was better until last night.

I came back to work yesterday and last night I woke up with that awful pain again. I considered going to the ER but it passed after a while.

Here's the rundown:
GP says find surgeon - sent me to young doc who said could be pancreatitis or might develop it and could die.

I called "Miracle worker doc at Vandy" who said he couldn't find a surgeon who could do it within the month and he wanted to see me first and was afraid that surgery might make me much worse but should evaluate the situation - it snowed here - six inches and I couldn't make my appointment - is rescheduled for today (in 2 hours to be exact).

I called Neurosurgeon - Dr. Bertaue - who said: Sorry Kiddo, you may in fact get worse pain wise, but if you don't have surgery you may die. You have to get a general surgeon to do this. I can't. I'm not qualified.

I called Doc in Memphis who said practically the same thing as neuro guy.

I saw the second surgeon at Centennial who admitted that he knew nothing of RSD and didn't believe adhesions cause pain and FMS was a "fantasy diagnosis". He didn't think the situation was all that dire and said he'd try laparascopy first, and six inch incision second. Everyone I talked to said he was, "Highly recommended".

The younger doctor was empathetic but scared the crap out of me. That doc was at Sumner county - the only thing that scares me there is there's been so many friends of mine come out feet first from that hospital for simple procedures (gall bladder surgery and colonoscopy). Meaning they died. I'd like that doc to do it, but not at that hospital.

I'm mentioning places for you Sheri, cuz I know you'll know where I'm talking about. Sorry for the rest of you all - I'm sure you've never heard of most of these places. Input is welcome though.

As for the pancreatitis - They think it's acute. I've had a stabbing pain just above my stomach and just left of my gall bladder (that I know very well now thanks to it's painful reminders) for about six months. It's gradually worsened over time and it keeps getting worse unless I'm on complete bedrest and NO food. Juice with no pulp is good. As is water, but that's about it.

The herbs that the OCMD gave me did shut the swelling down until I came back to work and actually stopped the vomiting. The pain was helped by about 60 needles in the right spots (accupunture). This woman saved my sanity and health just after I contracted RSD/FMS from my hyster. She's also a medical doctor - she was trained in Shanghai, China but works with a certified MD here in my area to RX medications- he makes the final decisions on herbs vs western medicine but usually heeds her advice. So do I. She's ordered a tea from china that will supposedly help the inflammation in my "other organs" pancreas and liver and intestines when it arrives but might not make it in time. She, too, says the gall bladder has to go if it doesn't get better really soon.

I've never drank alcohol regularly - EVER. Never been a binge drinker - EVER. So this is accute, but apparently becoming chronic. I don't know that for sure and won't until more tests are done.

I'm just so scared of more surgery. I don't think I could stand pain at a higher level than I've had for the last 2 years. I just don't.

SHERI: The glass of champagne I had with you on NY day was the first amount of alcohol I'd had in over 4 years. Except a beer 2 years ago.

I really think I'm a victim of bad genes. My father died of pancreatic and liver failure and subsequent head injury. (He fell). At the age of 51. The more I'm finding out about him....the more I see myself.

Sorry to ramble ladies, gotta go. I'm almost due for my appointment.

If not advice available, pray. Please?

PS: To answer the ?'s above:

I have adhesions sticking my intestines to my belly button. One doc refused to operate indicating that if he tried laprascopy "Instant Colostomy" - don't think I could live with that either. They all agree though, the same situation applies to conventional surgery (big incisions) - they don't know what they're going to hit/find until they're in there.

The younger surgeon blocked off an entire day to work on me.
The older one insisted I'd be ok and on my feet in a day.

I'm really scared ya'll. What would you do? <I've Prayed already>

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