Gathering My Medical Records for a Second Opinion

So I'm running around like a mad woman trying to gather up all my paperwork from various doctors and collect my x-rays from the hospitals I have been at in the past 6 months in order for the second opinion doctors to have all the information without having to go through all those wonderful tests again.
Of course, I had to put the disk in my computer since I have already read all the paperwork on me. This is apparently my diagnosis if anyone was losing sleep over it...lol. I just thought I would share, not sure why but I am... Maybe because people on here would also be able to understand the jargon since my other friends have no clue...haha


The abdomen and pelvis have been scanned helically with intravenous contrast.
CT enterography protocol has been followed.

The liver, spleen, and both kidneys appear normal.

The patient had a previous total colectomy and there is a terminal
ileo-ostomy present in the right lower quadrant.

There are several grossly abnormal loops of small bowel identified. There are
multiple dilated segments with some narrow thick wall segments intervening. The
second and 3rd parts of the duodenum are involved and are dilated with some
narrowing of the distal 3rd and 4th parts of the duodenum and proximal jejunum.
There are then multiple segments of dilated jejunum with intervening
strictures. Proximal jejunal loops are aneurysmally dilated measuring up to 6
cm in diameter. The small bowel is somewhat shortened and I believe that there
may have been previous distal ileum or resection as well as the colonic
resection. There is a dilated segment of small bowel seen in the pelvis. This
likely represents more mid or distal ileum.

There is no evidence of mesenteric disease. There is no evidence of
intra-abdominal or pelvic abscess identified and no definite evidence of
fistula formation.

There is no free fluid in the abdomen or pelvis.

CONCLUSION:

Pattern is in keeping with Crohn's disease with skip lesions and
aneurysmally dilated segments. The changes are most severely involving the
proximal small bowel. It is difficult on this study to assess the activity of
the disease.

You suggest an interesting point, Budd, regarding simplifying medical language. They are already creating laws in many places simplifying legal language. Your lab results are obviously written by a doctor for a doctor; and I am sure we all can appreciate the need for this. It would be nice, however, if medical professionals could learn to translate some of this information in writing so that the average layman might rise above feeling 'clueless'.  I like seeing "no evidence of" or "appears normal"; but doctors can provide us with clearer, written information so that we can play a more active role in our own health care management. At the same time, this does not relieve us of our responsibility to learn more about our own situation; and there are plenty of great resources around to help.

I must agree with your thought that doctors really should speak "our" language. However, I'm thinking for many of us this mumbo-jumbo actually makes sense. Well, I can basically understand it. But yes, it would be nice if, when going in for the follow-up appointment, instead of the doctor saying, "Looks ok," they told us, "Well, you are having some difficulty due to _____ in this area," *point to area on patient* "and we can clearly see that, so this is the course of action we will need to take...etc. etc... Perhaps people would better be able to care for themselves if they really understood what the bloody hell was going on inside and why."

budd002, the last diagnosis I got from my doctor was exactly like yours. Mumbo jumbo
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written from one doctor to another doctor. I spent 1 hour on the internet deciphering what all the mumbo jumbo was about. I agree with you 100%; these doctors need to put it in simple language so we can understand what the hell they're talking about. Have a great day.
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Bob

You know, Buddster, sometimes I wonder if my doctor even understands what all this gibberish is about. I'll give you an example: I took my x-rays to the city for a specialist to look at. He didn't find much wrong but complained to my doctor about not having any acute angle shots of the lumbar spine. Okay so far. The next year, I had to go back to see the same specialist and told my doc about the guy complaining about the acute angle shots. My doc said to me, "Ed, you're having too many x-rays, but we'll get him his acute angle shots." I had three new x-rays taken, and these new x-rays were put in the envelope with last year's x-rays. Now, for the fun part, as the doctor was taking the x-rays out of the envelope, he managed to get the new x-rays out first, and I watched him check the dates on them. But after three negatives, he just kept sticking up the rest of them without checking the dates. I mean, they were new, right! Of course, I had a copy of my visit to this specialist even before my doctor did. I have a really good lawyer. Anyway, as I had an appointment a few days later with my doctor, I asked him to read the third paragraph, which he did three times and found nothing amiss until I pointed out that this specialist noticed an increase of arthritis in my spine. So, the question became, how could he see an increase in the same x-rays he had seen the year before, and he could not have found an increase in the new x-rays because he had nothing to compare them with. When my doctor finally got the picture (pun intended), he started laughing so hard my wife could hear him out in the waiting room. I think he must have told every doctor in the hospital and said I'd make a good detective. I hope I have explained this well enough so you could see the humor in it. Have a nice day, ED
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My Ostomy Journey: April | Hollister

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So, buddy, what is going to happen? That sounded like all the crap I went through. My question is

As usual, what I say to the specialists and what does that mean exactly? What are they

going to do? Or the usual, maybe more tests or try this medicine, or maybe try that medicine

blah blah blah. Hey, what about Infliximab infusion?
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Half the time, I see things they

think aren't actually exciting enough, and my Prof. has said, "Oh, don't worry about that." You know,

grrrrrrrrrr
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Ok Budd, I'll admit that what little I understood, I can see where you have a problem. Have you had many blockages? You know, the type where you wish you could pass out? If you're not being bothered with things like that, great; if not, I could see where a really good surgeon is your next step. So, we wish you luck and want to know as soon as possible how you make out. Maybe drop me an email so I can quit worrying, ok, Ed
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Think it means you got a poorly tummy Sharry! xx

I'll try to keep this as brief as possible, but I want to share with you my experience in the hospital and with a doctor. I am a colostomy and a reversal of the same "victim" and as the inmate says, "I am not supposed to be here."
1. While sitting outside one day, I was having difficulty taking a deep breath.
2. My wife called 911; they responded within a few minutes.
3. EMTs determined that there might be some pneumonia setting in.
4. I arrived at the emergency room and was immediately cut loose from all my clothes.
5. Hooked up to all the machinery; determined that I was suffering from "congestive heart failure".
6. Given 4 injections of Lovenox directly into the abdomen (fights blood clots).
7. Sent to ICU for overnight observation, and more Lovenox injections.
8. My abdomen begins to swell (remember, I am here because of "congestive heart failure").
9. Back for tests: MRI, CT, X-ray, and some I don't remember, "congestive heart failure".
10. Several days of more tests, head-scratching, and uttering "hmmm", "congestive heart failure"; abdomen still swelling.
11. Woke up late one night in the operating room, thinking "congestive heart failure"?
This is going to be the big one!
12. The next morning I am informed that a colostomy had been performed because my colon had been pierced 8 times, "congestive heart failure".
13. Now all kinds of complications set in, and I remain in intensive care for the next 3 months.
My wife finally almost kidnaps me and brings me home to a hospital bed and round-the-clock care, went through all CDs and savings accounts paying for nursing at home, "congestive heart failure".
14. One year later, got my reversal and went on to recuperate, and am in great shape now, "congestive heart failure".
15. POINT IS—I lost almost two years of my life and a ton of money simply because some medical person did not know the correct procedure for giving an injection in the abdomen.
16. No heart problems, am 74 years old, and my cardiologist can't understand why.
Don't try to fix it if it ain't broke!

Jack,

Just wondering why they would keep injecting you in the stomach? I've had plenty of blood thinners in my life, and I always get them in my arm. I'm bruised like I was beaten afterward, but I have never had an injection of any type in my stomach. I'm too afraid; I think it would be a very sensitive spot. I give myself B-12 in the butt, Humira in the leg, and test blood in the finger. How is the old ticker anyway?

Sharry

Hello Sharry,

I'm not that much into cardiology, but Luvonex is supposed to dissolve blood clots.

They were treating me for congestive heart failure, and that is a buildup of fluid around the heart, making it hard for it to beat, so they decided to inject me directly where they thought the clots were. Made sense to them.

However, there is an approved procedure for giving the injections:
1. Pinch up the skin on the side but still over the abdomen.
2. Push the needle in at a 45-degree angle so as not to penetrate anything.
However, as I'm sure you have seen in all the movies, haste is of the utmost importance. Everything is push, push, hurry, hurry "let's save this guy at all costs!"
They mean well, but guess what... they are interns!
Of course, with all those holes in my colon, I was leaking like a sieve, and intestinal fluids don't mix well floating around in the abdominal cavity.

BUT the old ticker is doing fine, thank you.

P.S. Just remember in your hospital stays, if you hear the word Luvonex, remember what I told you

God Bless

Jacksprat

"I'll try to keep this as brief as possible, but I want to share with you my experience in the hospital and with a doctor.
I am a colostomy and a reversal of the same "victim," and as the inmate says, "I am not supposed to be here."

What an ordeal, Jack! Your loss but our gain.

Prime,

you know, I thought it was an ordeal too, and it was, but it's over now. And my heart goes out to the souls I've met in here that fared so much worse than I. Never having had any contact with the procedure, I knew nothing about it, but some of the horror stories I have read in here... Man, some have a lot of guts.


Thanks for the kind words, Prime

Jack

Hi All,

I sympathize with all of you regarding Dr. rhetoric & medical "mis" adventures. Since I became ill at the age of 12, with surgery at 15 and then again at 19, I've been on the "ride" for more than 60 years...

Some incidents were "funny... others not so much.

When I was pregnant and in labor, I told the nurse I couldn't have an enema, had no rectum. She told me to roll over, or she'd get someone to help her. It took some convincing...

When I was 12, my doctor told me that if anyone (interns) started to do something to me that I didn't agree with, to just start screaming. That advice has worked well for me... then, and although modified, even now.

But I still fell victim. 4 years ago, I developed persistent leg pain when walking as well as breathlessness. Preliminary diagnoses were heart failure (swollen legs), compartment syndrome (sports injury?), neuropathy (diabetes) or PAD, peripheral artery disease. Cardiologist first, ruled out heart failure... Took 3 months.
Pulmonologist - diagnosed with undertreated asthma. New meds, but was still breathless.
Endocrinologist ruled out diabetic neuropathy...
Orthopedist ruled out pain caused from degenerative disc disease or osteoporosis...
Podiatrist consultation for new orthotics... didn't stop the leg pain.
Vascular Surgeon... after specific tests determined that I didn't have PAD... even though I had all the symptoms...
Suggested that perhaps if I lost weight and got "fit" the pain would go away. So I decided to just go on with life, lost my job, was hobbling, almost needed a walker, but joined the gym, lost weight, began swimming, and did cardio minus the "impact".

After 3 years... not working $30,000 in debt from medical insurance costs, but lost 40 pounds, and was more "fit". But still had leg pains. I cried to my primary doctor... and begged him to put me on PAD medication, and if it worked great, if not, I'd go off of it. He agreed, and three days later I was pain-free.

I hate that Vascular Surgeon, who was so insistent that I COULDN'T have PAD, and am upset with myself for not being more proactive on my own behalf at the beginning. They don't know everything. So my advice to all, is stand up for yourself, ask questions, don't let yourself be intimidated... You have every right to understand what your condition is, and if the doctor doesn't communicate well, he's not the one for you.

Happy Mother's Day to all the moms out there...