Posted 7/3/2017 9:21 AM (GMT -7)
I am in need of another Dr. this would be roughly my 5th...
Here is my background:
Stressful, non ending family environment as a child consciously aware from the age of 10 on. Extreme stomach pain and frequent diarrhea age 16 ish ( My pain is excruciating when there is a flare up, to the point that I do not have children because I did not want to pass this onto another human being, Most Doctors do not seem to understand how painful it can be… 12 on a 1-10 scale at the worst and more times than not). Generally triggered by food or stress, but over the years decided not the cause but a secondary trigger. At 16, three months of rectal bleeding and splotching finally lead me to seek a doctor to find out what was killing me. Diagnosed with the triple definition UC,Crohn's,IBS/IBD. Suppositories to stop the bleeding, and a than prescription for Sulfasalazine and Folic acid. (Stopped taking after 1 year).
In my Child hood I had a couple of Sinus infections that where similar to head colds… antibiotics cleared them up, to a youth at the time, they did not seem out of the norm.
I changed my diet: Discovered through watching Phil Donahue I had Lactose intolerance. So, I cut out most milk products, cheese usually ok, but no ice cream or mIlk which was instantaneous Diarrhea. Cut out most red meat. I found that when i was dying the only thing I could eat safety was bread. Went to 2 Dietitians both merely reiterated I could eat bread, so virtually no help at all. One of the questions in regards to food was as to why I could eat a Tommy's greasy chili buggers and be fine but 1 bite (Literally) of Prime rib or Salmon could set me off. Only response was the meat was so ground up so it lacked fiber…no idea if a correct statement or not. Also Discovered through a PBS Special, If you have a known trigger… Take 2 tablespoons of Apple cider vinegar and then eat the trigger food. If you survive the test, it suggests a lack of acid in your stomach. Started taking Hydrochloric acid pills with meals that may trigger… when I remember, seems to help. Also when I remember I drink mix of Apple cider vinegar, Honey and water as if Ice tea. Also seems to help.
Diet seemed to decrease the number of flareups. for a while I was only getting 2-3 flare-ups a year. with each meal rare when not, I am gassy, sometimes mild sometimes extreme leading to flareup.
Picked up chicken pox at 32 years old… first time I had a illness where I could not keep my eyes open, complete exhaustion.
Went to England at age of 36 and picked up a sinus infection that was really bad… put on antibiotic, 3 days of bedrest. was up and about there after. Since then I have been having reoccurring, very bad sinus infections 1-2 times per year almost every year since. Not the kind I had as a child. Rather these can be and mostly are, completely debilitating. I can have facial pain from sinus pressure and Light sensitivity that runs from a 3 -12 on the pain scale. and more times then not, 8-10 pain level until antibiotic reduces the pressure. They do not go away by themselves (tried to out live the longest without drugs, went 5 months then needed the drugs.) have had a few rounds of oral prednisone a couple of times that helped. Last 2 times was finally given prednisone injections which made a huge difference within a couple hours. I am an insomniac and when I can’t keep my eyes open during the day I know my body is in serious fighting something off mode. The last several years of sinus infections have left me typically unconscious for 2-3 weeks, no joke. than weeks of lethargy , fuzzy thought processes exhaustion to the point that walking up small flight of stairs leaves me winded. These start with no symptoms at all… than I awake with a scratchy throat and within the next 24 hours I have green/yellow glowing mucous pouring out my nose, post nasal drip, choking etc.
After about age 40 my system changed, Prime rib not as nasty to me, Salmon still pretty deadly although I can eat a little, Ice cream in small amounts ok.
Usually flare ups can be 1 Bite of a food (which may have been fine 20 times before but this time… Screwed). Also can be triggered by pants or belt being to tight or road vibration. One Doctor suggested that would be IBS responding to the pressure. I had early fluoroscopic exams at 16 and found a large part of my Excruciating pain comes at the bend in the Colon. It feels like my intestine/Colon is behaving like a balloon being over inflated. I have also found that once triggered, if I palpate that region and can move it along to a quick release 20 min. or so…. If I don’t it can be 2-3 hours (literally) of intensive,12 pain scale... pain and diarrhea.
In 2013 attempted to eat healthier, Hi fiber bread, more salads and vegetables etc. 15 flareups. went back to what I know I can eat and survive on. Had 4 or 5 flare ups in 2014 until… Doctor put me on Lipitor for Cholesterol. 28 days into taking the drug…I started to have 3 weeks of none stop flare ups. Finally put 2 and 2 together and asked Doctor if Lipitor could trigger UC . Typical response, indicated unknown reason, suggested stopping Lipitor. day 4 seemed substantially better. 2 weeks later had 1 more flare up.
2015 Gastro 4 flareups.
2016 Gastro several flareups. couple sinus infections
2017 had 2 months of bedrest from Sinus infections multiple antibiotics finally cleared the infections… 2 weeks of feeling better and than a solid month of everyday stuck on the toilet.
Roughly 3 months of feeling better and another sinus infection 2 weeks of bedrest lead to being awoken at 3 in the morning by excruciating stomach pain unlike my norm which is a pain centered in the abdomen around the bend in the colon… in this case my stomach was so distended the skin external of the abdomen was screaming at me. Ran for the bath room found I was also dealing with extreme joint pain at that moment . Writhing in pain… Stomach pain diminishing greatly with each belch of fart, but it took 3 hours to pass the contents of my digestive tract and the joint pain kept my from sitting in any one position. On and off the toilet for hours. laid on the floor for awhile, because it was easier than stumbling back and forth to the bed. Finally remembered I had hydrocodone in the house took one when i thought I was almost done, finally passed out from exhaustion, I was awoken by crapping the bed for the first time since I was a child.
I have lost almost a solid 4 months of my life this year to bedrest (asleep) and toilet time. not being able to leave the house for need of ongoing bowl movements.
I am losing all quality of life...