Posted 7/29/2011 6:02 AM (GMT 0)
I've read many postings here, but never written before. I'm Jody, diagnosed in 92. Three surgeries that year for exploratory, resection & abscess. Total of 12 surgeries from resections, strictures and abscesses. Crohn's throughout entire small bowel with currently 3 different anastimosis sites. Long history of flares, hospitalizations, PICC lines, port-a-cath, allergies & reactions to medications, septic infections, drug induced hepatitis, strictures & scar tissue. Currently on 40 prednisone, Humira, 6mp, +
I used to live in beautiful North West Montana, but had to travel to Salt Lake City for surgery last year. After the surgery told if I have any more surgeries, I will have to be on TPN the rest of my life. When I came out of remission less than 7 months later, my husband and I left our home & business and moved to Utah. I have a great new Crohn's specialist.... BUT, now dealing with new complications and looking for anyone who has "been there". Spent 2 1/2 weeks in the hospital with severe flare, and for the first time trying to deal with a vaginal fistula.
Finally left hospital on TPN and in less than a month have developed a blood clot above PICC line...I have never even heard of this before...they said because it was a large, double lumen. My arm/neck are extremely swollen and they pulled the PICC. Have to inject Lovenex into abdomen 2X a day and take Coumadin for a few months? I'm very afraid of the side effects of Coumadin and even more afraid of the clot breaking off.
Finally, I had both upper and lover scopes done today, the flare has created another very tight stricture and my doc could not get it to open with balloon dilation. I have NO PICC, doc does not want to do another port... I'm not even sure my doc knows what to do at this point...
Any suggestions welcome.......