- Joined
- Apr 30, 2015
- Messages
- 3
I have had Crohn's disease for 30 plus years. I was diagnosed in 1991 after being misdiagnosed for 11 years prior. I was hospitalized several times and still misdiagnosed. I had 3 children during my misdiagnosis. I was finally diagnosed with a 105 temperature and serious dehydration. I was treated with Prednisone, sulfasalazine then Pentasa, Asacol, 6MP. Prednisone throughout. I was on 6MP (Purinthol) until I contracted Parvo Virus. I had very low WBC count as well as a low platelet count. I was taken off 6MP. I was better Crohn's wise and ran from the medical merry go round for many years. Not necessarily a wise decision. I have had several different GI's. After about 8 years of no treatment I was forced to seek treatment and was told I could take 6MP again I was even given a Promethius test to determine my sensitivity. After two months my Pancreatic and liver enzymes elevated. I received a catscan which showed damage to my Pancreas. I was removed from 6MP forever. In the last two years I have become VERY ill. I have had 6 bouts of Pancreatitis one which left me in the ICU. I smoked cigarettes for 40 years. I know how bad it is and each doctor nagged me to quit. I also smoked marijuana which is VERY helpful for the symptoms and gives you an appetite. I went to NY Columbia Pres. I quit smoking cigs for over a year. I had stents put in my Pancreatic duct. I was told I have Chronic Pancreatitis due to 6MP. Maybe that is true but I was also told I had PSC then told that was an over read. Personally, I feel that I have Crohn's Pancreatitis. Well, after not smoking for a year and a couple of months I got Cdif, and my Crohn's which wasn't bothering me very much all of a sudden came back with a bang and spread throughout my entire large intestine where it has never been in 30 plus years. I really blame this on my quitting cigarettes. I was in the hospital twice in Jan and it was decided that I would take Remicade. I only had 2 infusions. On the second infusion I had serious neurological side effects. My face was numb, lips tingling, lost my balance, couldn't speak right and was severely exhausted. I was sent to a neurologist and was told YES this was a reaction to Remicade. Now I am not taking it and I have no idea what the next step is. I started smoking again (BOO) I will let you know if it disappears in the large intestine. I am weaning off of Prednisone down to 10 mg. I will be off in a couple of weeks. I am a medical marijuana patient and I swear by that. Can anybody tell me if they ever had any neuro side effects from Remicade? I would also like to know if anybody knows if there is a connection between CDiff and Crohn's? I have permanent damage to Pancreas. It is atrophied. I feel very defeated by the medical community. Words of wisdom or any other info will be very much appreciated. Thank you. Wow I left out an important piece of information. After being removed from 6MP I had surgery to remove part of my terminal ileum, ileocecal Valve and part of cecum and appendix. I did very well for a long time after that surgery that is how I escaped treatment for a long time. One more thing: how come nobody talks about receiving narcotics for pain relief. I take Oxycodone for pain and that is also very helpful for both diseases Pancreatitis and Crohns. Sorry such a long post.
