I wish I could help Marlena,I'm flaring just now,and it just snuck up on me.I have been on Pred.for a month and it started five days in :confused2:If you sense a flare coming, is there anything you can do to avoid it? I really don't want to hit the hospital again. My husband is in early stage Alzheimer's and really shouldn't be left alone. I think I get some blockages, as I start feeling full a lot and then comes the severely distended tummy, pain, diarrhea and if I can just throw up, all begins to be better. The pain is awful and usually my potassium goes through the floor and I wind up on that awful tasting Flagyl. Talk about an appetite killer!
Peluchde, welcome and I'm really sorry that you are in the situation that you are in. As for Remicade I couldn't take it unfortunately but the first 3 infusions that I took really worked for me. You might try the remicade support group on the forum you will get some great advice there - there are a lot of long time remicade users that post. It isn't any worse than the humira it just takes a little longer to get into you. Good luck and keep us posted on your journey. Thinking positive thoughts for you.I had my first obstruction on my 52nd birthday! What a shock! I had been healthy all my life. Doctors called it a fluke. Three years later, I had 5 obstructions in less than a year and I was sent to the Mayo Clinic in Jacksonville. They finally diagnosed me with Crohn's and told me it was "bimodal" - occurring in the early 20's and later in the +50's. My older sister suffered for many years with Crohn's and passed away at age 44 from sepsis due to a bowel perforation. Needless to say, I was/am not thrilled with the diagnosis. I've been on Pentasa, Prednisone, Entocort, and now Humira. GI would like me to start Remicade infusions, but I am frightened. Anyone with advice for me?
Welcome to the forum Terri.Very happy I found this group. I was diagnosed at 77 and my doc said I was the biggest surprise of his career. Not very pleasant for me as he is a gasto prof at the university, had me feeling very odd.
I am very active, always have been and I will deal with this one way or another. Have had lots to deal with before and I don't plan to let this get me cornered.
Sorry it took me so long to respond, I have a problem with drugs. My body tends to reject everything and so far it has rejected most things that we have tried to get my Crohn's under control. I had a really bad allergic reaction to Remicade (serum sickness), but I also had an allergic reaction to Imuran which caused pancreatitis. The nurses that do the Remicade injections are really good at least they are here I didn't have any issues with them and from the things I've read on the forum most of the people that have the infusions even those that have the issues that you have don't have a lot of problems with getting the treatments, they do this for a living and they are good and for the most part kind and gentle. I think they understand better than most that you are not there because you want to be.Thank you for your nice response. If you don't mind me asking, can you tell me why you couldn't continue the Remicade. I have heard of so many problems. My veins are small and they "roll" or so I've been told. right now, I'm going on Day 21 with a pillcam stuck in my small intestine. My GI ordered another colonoscopy prep for tonight, but as it is after 8PM right now and I have to be up at 5AM, I'm putting it off until tomorrow. This will be the 4th prep I've had since all of this started. I've got such anxiety�� thank you for your kindness.
Hi Jude. I have had every crohns symptom you mentioned with the exception of the recto vaginal fistula (I'm male). I have had a fistula between loops of the small instestine. I am so sorry you are having such problems with your medicines. I am almost 52 and I too spent many years with being told I had IBS. Unfortunately I can't answer if you'll every feel normal again, but before my diagnosis I was asked by my GI when the last time I felt normal was, and I could not figure it out. It had been so long that I did not remember what normal was.Hi people, very new to this so any advice gratefully received , was diagnosed 6 months ago with crohns and recto vaginal fistula. Bad reactions d and v , to 6 mp and azathiripine,prednisolone hospitalised for a month. started on infliximab and had anaphylaxis after 4th infusion , never had any improvement in symptoms and now running fever as well. Doc wants me on anti biotics and steroids again , despite previous reactions to prednisolone , :blush: spent many years with what I thought was ibs . Just had 52nd birthday and wondering if I will ever feel normal again :sign0085: