Thursday, August 13, 2009

Illness is a B...

July 19th 2009 I was admitted to the ER for abdominal pain. A week later with pain meds & Prilosec in hand I was released with no actual diagnosis. After a week on the synthetic but very strong narcotic Dilaudid my GI pain was better though severe withdrawal symptoms were around the corner. After 5 days of emotional pain as severe as my GI pain, I was better. Then the abdominal pain started again.

I've had a colonoscopy, endoscopy, enema x-ray, regular x-ray, ultra-sound, MRI & 2 CT scans. Turns out I don't have an ulcer, IBS, appendix issues or anything obvious from the tests I've had. H-pylori was negative among other things and no one has given me anything but guesses in the nine doctor appointments I've had since being out of the hospital. One doctor did not guess. He just shrugged his shoulders & said "I don't know" while shaking my hand.

Meanwhile the pain is getting bad again. It seems as my period gets closer, my GI pain increases. Tuesday night was so bad I almost went back to the ER again. Today I awoke with the usual stabbing pain as well as a burning sensation. My upper GI is not happy. Eating makes the pain worse yet I'm so hungry because all I can eat are 2 or 3 very small meals a day. For instance today the time is now 4:50pm & all I've had is 2 rice milk steamers & 1 fried egg.

A Google search may lead me to some answers (gawd I love that search engine!). In the hospital it was mentioned as a possible theory that my pain may be coming from my endometriosis. My gynocologist wanted me to see what my GI specialist had to say before I looked into the possible endo connection. I guess there may be a test or two left to try & diagnose a GI specific issue (one involves swallowing a tiny camera) but my gut (ha ha) tells me that endo may be a the root of this issue. I used the key words endometriosis & GI to see what would pop up. Intestinal endometriosis was at the crux of the links.

This is some of what I found on a particular website.
"Women with intestinal Endometriosis very often have symptoms but, in most cases, the correct diagnosis is not made. In order to diagnose intestinal Endometriosis, it is necessary to ask the right questions. When the proper questions are asked, the diagnosis is easy. The diagnosis is usually made by history, because x-rays of the intestines do not show it and other studies such as colonoscopy do not show it either. Laparoscopy may or may not demonstrate implants on the bowel wall but you have to know where to look for them."

"A woman with intestinal Endometriosis will tell me that she has significant GI symptoms that vary with her menstrual cycle. The symptoms may be present only at the time of the menstrual period or they may be present all month long and worsen at the time of the period. The most common symptoms include loss of appetite, nausea (but vomiting is rare), diarrhea, increased gas, significant bloating, crampy abdominal pain, painful bowel movements, and sharp stabbing rectal pain. Many women also complain of constipation that seems to vary with the menstrual cycle. Unexplained iron-deficiency anemia may also be a clue to the presence of intestinal Endometriosis. Menstrually associated rectal bleeding is diagnostic of intestinal Endometriosis."

All but one symptom I had the day I went into the hospital and most of these symptoms I get every month. Why was July 19th so much worse? It would be great if someone knew. What would be best off all is if an expert who knew their shit & gave a shit could tell me what's wrong. Intestinal endo is just my own personal guess at this point. There are still other possibilities for the illness such as spastic colon or hirshsprung disease. But the caveat is the pain gets worse as my period gets closer. So WTF can I do but endure the pain while counting my many blessings such as good insurance (my $22,000 hospital stay was covered completely), a great spouse and support from my friends & co-workers. Oh and I can keep the faith that this crap won't last and an answer & proper treatment will come to pass.

Here's another good link on intestinal endo. May we all have good health!
~F

2 comments:

Micah said...

Tonight on npr they were talking about how the average doctor lets the patient talk from 3 to 10 seconds before interrupting them and then the patient usually forgets what they were going to say. Some study or something concludes that this is a major problem for the whole of western medicine. I guess you aren't alone.

Next week I begin my fabulous adventures with the mysterious growth in my head by visiting doctors. Thanks for prepping me. I'm bringing a very experienced nurse so she can play the "informed consumer" part for me and ask questions I would never think of.

I'm tagging you in a video you gotta watch.

Alison said...

Fran,

I'm sure the very *last* thing you want to see is another doctor. However, I happen to know an ND who specializes in gastroenterology, and is additionally the most fantastic diagnostician I have seen apart from House, MD. She is the founder of OCOM, in fact, and has been practicing for over 20 years. If anyone can figure how what's what, it's her.

Satya Ambrose, ND
15691 SE Royer Rd,
Damascus, OR 97089
(503) 658-7715

Once she figures it out, she will help you find a solution, whether it is lifestyle, herbs, acupuncture or western drugs.

Also, she listens.

Really: please please please, give a call.

If I remember correctly, Powells insurance should pay for the visit and the tests.

I wish you the best and nothing but good luck.
xox
Ali