Severe bloating/gas/fullness/weight loss
Hi, I'm new here, my story is complicated but if someone has time to read it and give me any ideas, I would appreciate it so much...Im scared and in agony...
My intestine was perforated during ovary removal in Nov. 2005, it went unnoticed while in ICU for 4 days, got sepsis, respiratory arrest, on ventilator in coma, endured 16 repair surgeries, ostomies, resections, mesh, wound vacs, central lines, tpn, flesh eating virus, dvts, all in one year.
Since the last surgery in 2006 I havn't been right. Chronic severe disabling pain, mesh failed, huge hernia, massive adhesions/scar tissue, nerve damage, no frontal abdominal muscle wall at all. At first I could have mostly normal bms, but always constipated. Over the past year things have gradually gotten worse. Pain worse even on pain medications, change in bms...constipation even with routine colace/mirilax, occassional suppository. but the bm has turned to a paste like consitency, flat sticky and pasty. I also have no "push" feeling, so must have pelvic floor disfunction...horrible bloating and gas (flatus and belching). Since the incident my diet ruled out any veggies, fruits, seeds, nuts, red meat, salads, etc.
But lately I can hardly eat anything, I get full aftr a few bites of mashed potatoes. Almost everything causes severe bloating and pain. So I have lost about 14 lbs in a couple months. I went to doc, just had catscan and bloodwork...showed hypothyroidism, started on levothyroxine, catscan showed swollen sigmoid with small obstruction, misplaced organs (due to adhesions pulling out of place), they want to do endoscope next.
I cannot have a colonoscopy due to scarred up intestines/misplacement for risk of perforation. They cannot repair the hernia or take out adhesions because they say I would not survive or it would make things worse. I also have a blood clotting disease and am on blood thinners for life. I recently started probiotics and digestive enzymes.
I am at my wits end with this. They pat my shoulder and give me sympathetic looks and basically say its a matter of time...what a horrible thing to convey to a 45 y;o woman! The medical community did this to me essentially and now can't fix the mess they started. So I'm on my own and trying to find any help I can...
The bloating and fullness are keeping from eating, even liquids. Ensure has dairy and about kills me...I did get the clear ensure, its ok. I live on saltines, chamomille tea, gatorade, water, occassional egg beaters, jello and once in awhile mashed tatos. Food is scary...but not eating hurts too. The not feeling an urge to evacuate my bowels is scary...but everything is prolapsed..
I'm just looking for options...or to know others are dealing with this...that I'm not dieing...
Thanks to anyone who reads this, and thanks for these boards and all who share their most intimate details...we are all just reaching out for help.