Hi, I have ulcerrative colitis in the lungs. I had it for 2=3 in the bowel, without any luck controlling it, so I had my large bowel removed. for 2=3 months I was feeling great. Then I started coughing phlgm up and I haven't stopped. I spend most of my day coughing and I need to sleep during the day as I'm so fatigue it's not funny. Do you have any other cases and if they have had any luck with controlling it?
replied to: cujoandcfer
Replied to: Hi, I have ulcerrative colitis in the lungs. I had...
This is crazy, I have had an ileostomy for uc for over twenty years and now I am told I have intermittent asthma by a pulmomonologist, and I always suffered from tremendous fatigue. I also have a theory that in retrospect may have prevented my surgery if I only had the sense to put two and two together at the time. Your complaint has given me an idea to try this out on my "new" symptoms that I now have. H
In a nutshell here is my story:
In the seventies I was placed on hyperalimentation for a serious UC exacerbation, at that time the only treatment was prednisone and asulphidine. Prednisone made me moonfaced and paranoid.
Bleeding profusely and in pain I begged for a pain killer. I was told this could cause toxic megacolon and fatal peritonitis. I said to the doctor:- "a dentist gives you gas that puts your brain on one shelf and the pain on another- you feel the pain but it does not belong to you in your head."
"Do you have anything that can relieve me? ANYTHING!"
They sent up a lady shrink who gave me a psychiatric interview.
She said she may have something that will help. I said OK!
I took the little white pills along with the prednisone and after one week the doctors very surprised said I was in remission. They sent me home on prednisone and asulphidine warning me to stay on the prednisone if I wanted to avoid surgery. I forgot about the little white pills and when I found out what they were I was I was mortified, I was not crazy yet I was given Haldol.
I will not go into my pychiatric evaluation as I did not believe in that voodoo stuff at that time.
Only after I was weaned off the prednisone which really was affecting me mentally did I begin to feel better until the next bout. Three years later I underwent an "emergency" ileostomy after I was told that UC was more related to genetics than anything else and that the surgery would be a "cure".
If I had used common sense I would have requested another round of haldol, but I forgot about all that because of the stigma associated with a major psychotropic tranquilizer.
Today no one listens to my story, I even tried contacting John Hopkins Gastroenterology- not even the courtesy of a reply. Only smirks and speculations on how stress may be associated with the disease from other doctors.
So- I am not a doctor , but I would suggest you head for the nearest shrink and ask for a short regimen of haldol. After reading about your situation I am going to do the same even though I already have an ileostomy. What do I have to lose? And the drug is easy to stop without withdrawal effects providing you do not submit to depakote or any other drugs used for head cases. I would not suggest staying on haldol for more than a couple of weeks. Tardive dyskenesia etc is possible from what I have heard, not to mention weight gain etc. perhaps behavior mod therapy might help in conjunction though have not tried this.
I am also on metropolol (a beta blocker) which probably now exacerbates my depression and fatigue. I have a strong feeling that SSI anti-depressents may not work on UC affected people and possibly Haldol has a biochemical affect on whatever triggers the autoimume reaction that in turn is exacerbated by pain. If you think I really am crazy, stand on line. All I know is that doctors are not scientists, very few think outside the box the pills they give you come in. Internists have never before prescribed a major tranquilizer for physical pain or other symptoms of UC to my knowledge