Irritable Bowel Syndrome and Digestive Health Support Forum banner

Porphyria and IBS

2K views 4 replies 2 participants last post by  143Angel 
#1 ·
When I was a child thru elementary school i used to wake up in the night vomiting. By morning I would be able to go to school. Never any other symptoms. When I hit puberty I started having extreme stomach aches, to the point that I wouldn't sleep, eat. Mom said she could hear my stomach from the other side of the room. Usually I would fall asleep from exsaution (I know that is misspelled). I was hospitalized for this 3 times before hitting the age of 14. Also I would have hives all over my body that would appear without warning stay afew days then disappear. By the time I turned 19 I had large amounts of protein showing up in my urine. Then threw alot of tests, A doctor told me I had porphyria. After that I didn't have the stomach attacks very much, sometimes not for a year or 2. But when it did hit, it hit hard. I was told that it goes into remition for a while. Well since I been having all these stomach problems with extreme pain and D, I sometimes wonder if it is the prophyria or the IBS (just recently told I had). I have asked my gastrologist, who lookes at me puzzled ahd told me this has nothing to do with that. But over the years I have found that if I mention that I have porphyria the doctors have to go look it up in the books. I guess my question, after this lengthy posting, is could the IBS sometimes stimulate the porphyria which seems to make things worse. My stomach aches are worse than having a baby. I know because I have had 4, all natural. Does anyone have any info or have the same problem?thanks
 
See less See more
#2 ·
I think it's unlikely for porphyria, which is very rare, to be confused with IBS. However, you can be tested for porphyria.------------------I am not a doctor, nor do I work for profit in the medical/pharmacological field, but I have read scientific and medical texts, and have access to numerous sources of medical information that are not readily available to others. One should always consult a medical professional regarding advice received.
 
#3 ·
I think it's unlikely for porphyria, which is very rare, to be confused with IBS. However, you can be tested for porphyria.------------------I am not a doctor, nor do I work for profit in the medical/pharmacological field, but I have read scientific and medical texts, and have access to numerous sources of medical information that are not readily available to others. One should always consult a medical professional regarding advice received.
 
#5 ·
I was told by a doctor at 19 years of age that I had porphyria. See the stomach aches are so close to feeling the same. You feel totally out of it when it is over. Just drains you of all energy. My IBS is stomach aches every time and the Big D just sometimes. Either way I am totally wiped out. I usually feel like I just went through a few rounds with a boxer who only punched stomachs. And sore to the touch. Bentyl is now helping me control the D. So far I havnt had any stomach attacks either. It's been a week since I have felt bad. My 13 yr old daughter now has the sympthoms of porphyria. Pre-teen years are the worst.
 
#4 ·
I was told by a doctor at 19 years of age that I had porphyria. See the stomach aches are so close to feeling the same. You feel totally out of it when it is over. Just drains you of all energy. My IBS is stomach aches every time and the Big D just sometimes. Either way I am totally wiped out. I usually feel like I just went through a few rounds with a boxer who only punched stomachs. And sore to the touch. Bentyl is now helping me control the D. So far I havnt had any stomach attacks either. It's been a week since I have felt bad. My 13 yr old daughter now has the sympthoms of porphyria. Pre-teen years are the worst.
 
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top