I am new to the site

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.

Hi,I just wanted to say welcome to the forum.I'm sure you'll find some good friends to chat to and also that you'll be able to offer lots of support and advice to newcomers of this dratted disease.
Best wishes,I hope you're having a "good" day.

Thank you for the welcome. I appreciate it because I was not sure if you could see my post. I am having an okay day today. I am in bed. LOL. Tomorrow an MRI of the brain.

oh,dear.Good luck.Please keep us updated.

Welcome to the community!

Please let us know how the MRI goes.

*hugs*