Waiting for Answers-how long does it take?

I have been sick off and on for the last few years. This last year the flare ups have increased and have been house bound the last 3 months. I can make it to Dr. visits, tests and the occasional outing, but never far from a restroom.

I am distended, I vomit up any food that isn't bland and soft, the diarrhea will not stop. I am sore, exhausted and not sure I can wait anymore for the answers. I am losing weight although since I am overweight that isn't necessarily a bad thing - other than the method is which I am losing.

I have had blood work done, 2 colonoscopies(the 2nd of which I am waiting on results as it was done on the 7th), endoscopy, stool samples, stomach emptying test, ultrasound, more blood work and my gastro said perhaps another stool sample test even though I did one, they just did one with the colonoscopy and I may need to another as he said Crohn's sometimes takes 3 tries to show up? He removed a pre-cancerous polyp from my 1st colonoscopy in Dec 08 and removed a flat polyp from this colonoscopy.

I feel awful. I am exhausted.  I do not have control of my bowels with or without anti diarrhea meds.  I have tried immodium and the dr. prescribed me welchol.  I also have anti nausea meds he prescribed, anti spasmotic meds he prescribed, prevacid and he wants me to take align daily. I sometimes have to wear an adult diaper because I cannot get to the restroom in time.  I soil myself at night.

I know this is gross - but is there anyone else out there going through this? Do you think my Dr. is doing the right things? I have considered going to the ER to see if I can get any relief faster.

I've had acquaintenances who tell me that I have their symptoms of colon cancer and the other diabetes?

Thanks for helping.

[spcy541]

You sound like me. Except I am gaining weight instead of lossing weight, which does not make sence to me. If you read my comments we sound the same. These doctors just keep sending me for more test and they keep telling me what is not wrong with me. I am getting to the point I want to hear bad news just so I have some answers and can start fixing this problem.

[lizziecee]

Hi - did your gastro take biopsies when doing the colonoscopy/endoscopy procedures?
These should show whether or not you have IBD (Crohn's or Ulcerative Colitis).

I don't think you will get any relief until you get a proper diagnosis. The meds you are taking will do nothing to keep the disease in remission and if you do have IBD, most probably need an immuno-suppressant, of which there are many. I inject methotrexate weekly, a chemo drug that used to be used for breast cancer) and have recently started on 8 weekly infusions, as a day patient in hospital of the anti-tnfA drug, Remicade. My symptoms are back - faecal incontinence within an hour of eating, distended abdomen, blood clots in my stool,,horrific pain when I pass a motion, etc. However, having suffered with Crohn's for 40 yrs, I have almost learned to live with it.  I just get proactive and ask to try new drugs as I believe I get resistant to them after a while. It is an ongoing battle, for sure, but what alternative is there?

I don't think the ER can help you, except to give you morphine! They are not gastros and unable to do the tests required. Your best bet is to find a really excellent, committed gastro who has experience of inflammatory bowel diseases.

Take care, and hope you get answers soon.

Liz.