Ulcerative colitis
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cujoandcfer
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?
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replied to:  cujoandcfer
whoreallycares
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
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