Advice and Guidance Please

kimreporter · Regular Joined: 05 Jun 2008 Posts: 14

I sent this previously, but something went wrong with message so here it is again.
My daughter is 23 years of age. She has had stomach problems for the past 2 years. I will try not to make this so long and detailed.

symptoms: stomach pain on and off, nauseas on and off during the day, bowel mucus looking, can be diaherra, thin, constipated or normal. no vomitting. Stomach appears bloated always.

-Spams frequently in pelvic area, stomach area and rectum. Either of these three places it occurs.
-No energy at all. Fatigue. Dizzy when standing.
-Lymph nodes can swell on and off at neck or behind ear. A little tender but then goes away
-says she gets hot and sweaty at night
-feet feel as though they are burning from the inside out -- and itch
-- chest feels tight. feels as though she has fluid sometime -- hard to breat at times -- can't exercise due to it

CT scan of abd
circumferential wall thickending of distal terminal ileum
mildly prominent mesenteric lymph nodes in right lower quadrant of abd
1.3 x 2.2 cm lymph node in right lower quadrant mesentrery
few other scattered lymph nodes in same location but smaller in size
uterus is moderate heterogeneous
possible fundal fibroid

CT Enterograophy
hyerplastic lymph nodes involving the ileocolic region
right lower quadrant lymphadenopathy
intra-abdominal contents demonstrate nonspecific adenopathy involving the ileocolic portion of mesentery
terminal ileum consistent with inflammatory ilieitis

PillCam
Grade II esophagistis
multiple aphthous uldcers throughout
medium size submucosal nodule in mid to distal small bowel
mild lymphoid hyperplasia in distal small bowel
one small polyp in distal small bowel

Lab: I will just give a few
WBC and RBC almost low
Hemoglobin and Hemocritic -- Low
Monocytes -- Low
CPR inflammatory -- very high
ANA - negative
the two blood test checking for Crohn's came back negative

Okay, she is still having problems. They want to do laparscopic, but my gastro is taking her time calling me back. it took her five weeks to call me about saying results ofpillcam and blood work. Are these findings not important enough to get my daughter back home to confirm either lymphoma, crohn's, carcinod? I am not a doctor, but these findings appear serious enough to me to get to the bottom of it. Please give advice or your guidance of what you would do if this was your daughter.
thank you. someone please reply

DulcimerGal · Posted: Fri Jun 06, 2008 8:31 pm Post subject: Re: Advice and Guidance Please

Hi Kim,

I have no idea what most of the stuff you have described below means...but one thing is for sure - if this were my daughter I would keep pushing til you get better answers, and certainly more timely ones.

Have you taken the results for a second opinion to another set of specialists?

You don't say where you are - but I live in Virginia and went to Michigan for my second opinions, I was very happy that the opinions were virtually identical, and so was the outlined course of treatment.

You have no answers yet, and two years is a very long time for someone only 23 to be so sick, and for you not to have a diagnosis.

Find another set of Doctors....
Best wishes in your search to help her
DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th
6 months Chemo to follow

Rotorhead · Regular Joined: 04 Jun 2008 Posts: 26 Location: Hawaii

Sometimes, only the squeaky wheel gets greased. Sometimes you have to be somewhat of a jerk to get your answers.

I always try using a little sugar first...lots of phone calls, thanking them for all they've done, can they please get me my labs? If it's not too far, do a "pop-in" in person (if you can access them; my docs are pretty easy to get to).

Always get the names/position of the folks you talk to - this is good practice and it sends a message to them as well.

Set a timeframe for this strategy - say a week - then it's time to get serious. It's easy for me, under this friendly exterior is a 16-year navy man. If it's not in your nature, get a friend to be your advocate. I did this when recovering from surgery, my sister got all the answers for me, and it was great.

Everyone has a boss. When you've finally hit that brick wall, go up the chain to the oncology clinic director or pertinent department head. Use the hospital suggestion box/help line. Make noise, drop names. I've never had to go farther than the department head level, and I've gotten results, but I admit my onc/radio/surgical staff is well above average.

Sometimes it is something simple, like a backlog in the lab. If they tell you that, ask them to upgrade the priority - it's usually done with a keystroke. In my opinion people want to help, but they may have become part of hospital bureaucracy. Break them out of that mold, they'll remember that they are there for patient care and should go to bat for you.

Again - I understand this may not be in your nature. If so, get an advocate - a close friend, family member, someone you trust and is capable of busting b@lls when necessary. Don't be passive.

Go to the library and check out "The Patient from Hell", it is a great study in self-advocacy and getting the most out of your medical professionals.

Hope this helps. Good luck and Aloha,
RH
_________________
Diagnosed Stage 3 rectal cancer Nov 07
6 weeks chemo/rad Dec 07/Jan 08
Surgery (TME) 11 Feb 08
6 months FOLFOX started March 08
My blog: http://rotorheadsblog.blogspot.com/

kimreporter · Regular Joined: 05 Jun 2008 Posts: 14

Thanks for the advice. I am going to be very agressive starting now. I realize she is only 23. I have found our gastro was not taking her complaints serious -- just as I did as her mother for several years -- but starting in January we started action. My problem occured when test were coming up with serious issues and gastro took five weeks to read her test, then she calls me in and says, oh, this could be serious, sorry i took so long. I just do not trust her now. My daughter is scheduled for laprascopic exploratory the end of this month. Again, I want to know what are they looking for. They do not believe it is crohn's due to the nodule, polyp and lymph hyperplasia they are seeing. Has anyone out there had similiar findings and what was the diagnosis? I do realize everyone is different, but I would think someone has had similar findings. If so, let me know what I may be up against. thanks a bunch

REB · Last edited by REB on Tue Jun 10, 2008 10:09 am; edited 1 time in total

I am not sure what most of that means. If you are worried about it (or suspect it) being cancer there are things they can do to find out.

If it is colon cancer, a colonoscopy should be able to find it.

A PET scan can see a cancerous tumor anywhere in the body.

And I am not 100% positive about this, but I think cancer leaves certain makers in the blood that certain blood test can see.

Whatever is going on, keep pressing the doctors.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor and Temporary Colostomy
Started Chemotherapy 11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil) and leucovorin, oxaliplatin. Also Avastin
Last Chemo treatment 04-09-08, Colostomy Reversal 04-28-08 Age:41

kimreporter · Regular Joined: 05 Jun 2008 Posts: 14

Yes, she has had a colonoscopy and (scopy) where they looked into her throat down to esoph. Where the problem is arising appears to be in the mid to distal small bowel as stated above and also in the right lower quadrant of mesentry (abd). The gastro feels as though it has symptoms or some signs of crohn's; however, she does not believe it is crohn's due to the fact that my daughter has other symptoms not correlating exactly with crohn's. The hyperplasia lymph nodes in mesentry area and small distal bowel, along with the nodule and polyp in small bowel is what they are concerned about -- plus the very high CRP-inflammatory count on her blood work, as well as low hemocrate and hemoglobin. (sorry for my spellings). They will biopsy these areas and look around at the laparscopy. Just can't seem to find anyone that has ever had similiar findings and what was their outcome. Thanks again for any advice or guidance that anyone can give.

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