Newly Diagnosed

You are correct in that the test was called Promethius. I had no other signs of CD except for the fistula and test results. 13 years ago i tested reactive to TB and last week my GI doc had me do chest x-rays to confirm that i didnt have TB and it came back negative. From what i have read this leads me to believe he is looking at Remicade, but i may be incorrect. I'm supposed to hear from him this week to know what they will do. I am retired Air Force (42 years old) with Tricare so i'm not sure what they will pay for. So far they have been real good at doing whatever the doctors ordered.

The seton is nothing compared to the misery i had up to the point when the abscess bursted on it's own. I spent Christmas day in the ER on Morphine and when they helped it drain it was a 100% instant relief.

tsitodawg said...
Miserable, almost the majority of people on this board have had fistulas or abscesses, so while they hurt and are horrible they are actually part of the disease for some. Do you know what blood test your doctors did to get the severe crohn's diagnosis? There is not actually a blood test that I know of that is a "Crohn's blood test" except for a test called the promethius test that has to be sent away for a couple weeks for results. It sounds like they have have taken all of the labs that were drawn at the hospital, the fact that you had an abscess turn into a fistual, and every other symptoms you had and came to their diagnosis through a collage of everything.
I am sorry that you were diagnosed with this disease and that it has already been such a painful and hard trial. Please know that things can and will get better once your doctor finds the right medications to heal the fistula and gets you put on a proper maintenance med. Given that you have a draining seton in your fistuala, they will probably start you out on a med combo of Flagyl or cipro(antibiotics), prednisone, and asacol or pentasa. If the fistua does not heal up, they may put you on a big gun maintence med called Remicade. Remicade is a powerful med that is given through I.V. every 4-12 weeks depending on the dose and frequency that your doc finds works for your symptoms. It will suppress the part of your immune system that causes inflammation called TNF. While the med does carry some bigger side effects, they are very rare to have and Remicade is by far the best medication for people that have chronic fisutalizing crohn's disease. It is a really expensive medication and many insurance companies require that a patient typcially fails the starter meds and moderate meds before going onto the TNF-inhbitors like Remicade, humira, or cimzia. Just know though that it is not impossible to get the remicade as a maintenance med early on because I was actually started on it as my first maintance med after I went home from my first crohn's hospitalization.

I just want to add though that this new disease sucks, but it is far from a death sentence. Please read on here as much as you can to become educated about the disease, but always remember that you will probably never have many of the complications and symptoms that others here have. There a ton of people living completely normal lives while having this disease, but they do not post here alot because they don't have a need or time to worry. Most that you read here are posting here because they have severe or moderate to severed Crohn's disease and this is an amazing source of support, hope, love, education, and friendship. Do not fight this disease alone. I am so glad that you found us so early on in your disease and you can ask questions or reply to other's posts to help them. I did not have anything like this for the first 4 years of being sick and I can not even begin to adequately express my love and gratitude of all of the support I have received from this site. Learn all that you can about crohn's disease because you are your biggest advocate and if you know about complications or meds beforehand, you will not be hit with shock if they ever enter into your life. Good luck and I look forward to hearing about your future with this disease.

All my troubles started on a trip with work. I woke up the morning of my 6 hour flight home and was in terrible pain and had to sit on an airplane for most of the day. By the time I had arrived home i could harly walk from the pain. This was Saturday and by Monday the fever of 104 and sweat set in. I went to the doctor the next day and he thought i had a fissure and or abscess so he gave me Cypro and flagyl and scheduled me to see a gastro doctor for the following week. I made it two more day before i had to go to the ER because the pain was so bad. The ER did an Catscan and didn't see anything and sent me home. I made it three more days and the large lump on my right butt cheek formed and now i had pain fever and could not sit. It is now Christmas day and the lump started to drain on it own which actually gave me some relief but scared the hell out of me so back to the ER. they did another catscan an found a perianal abscess with a pocket of gas. The doctor drained and packed the abscess which i do not wish on my worst enemy. It was painful but as soon as he drained it instent relief. I wont know if i will start Remicade until next week because my GI doctor is waiting to talk to the surgeon who is on vacation this week.

Thanks for the kind words and advice.. I hope your troubles give you relief soon as well.

tsitodawg said...
It is amazing how miserable and painful those abscess can be, especially if it has already formed into a fistula. Did you get any release at all when a lot of the infection or fluid had drained from it? I get big abscess all of the time in the oddest areas but lucky for me they are typically in areas that have enough tissue to grow in that I can catch them before they can tunnel like yours did. I just had a huge one that was on the front of my neck and was about the size of a golfball and I stupidly thought that I should attempt to drain it or lance it with a big syringe. I got it to drain, but the problem was that it really opened up to the point a 50 cent piece could fit in the opening and I got MRSA. I have had quite a few of these big abscesses and it is really important that you are keeping the area really clean so that you don't end up like me with a horrible staph infection. I am working on getting another huge abscess on my lower set of cheeks that is about the size of a raquetball and feels I am sitting on a huge ball when I sit down. This area was even more difficult and I am still fighting MRSA. My most recent abscess/boil is very close to the area that you have one and I can not stress enough to make sure that you use those toilet seat barriers, that you take time to really keep it clean and free of feces, and that if it does start to show the slightest bit of infection that you go straight to your doctor's office. I really tried to take things into my own hands again with the most recent one that I developed because it was painful, it was the weekend, and I didn't want to go to the E.R. despite me having a fever of 103. I drained 12-14 ml of gross infection out of it almost daily using brand new sterile syringes, but I still developed the MRSA and it has been so difficult. You already have enough on your plate to deal with your new diagnosis let alone a secondary complication to your disease. Good luck and I pray that your benefits do cover remicade. Thank you for all of the many years that you served our country and as one tax paying citizen, I could not think of a better way for my tax dollars to be spent than to take care of retired and wounded warriors that did a job few dared but all take in the benefits of your sacrifice. Thank you for the deepest part of me.