I am very fortunate in the gi dept. My dr is great, gawd I had some toads before him. I have been with him 6 yrs. In fact, he is the one that said I am medically retiring you, file for SSD and I will write them any kind of letter they need or want. He said I do believe that people should work they just do better, however, you will be my 2nd patient I have ever retired and that is what you will do to save your health. He said you have a very high stress job that is contributing to your stress level and just the disease itself and the stress of being an unhealthy sick person is why you have no business being employed, end of story. I had been under his care a year when he made this decision. In one year my disease was in no better shape than when we first started. But on my very 1st appt he told me that we had a very long rough road ahead of us. Boy, I remind him ever so often of that statement. And, yes, I filed for SSD and git it w/o a problem.
No, I still have my colon. I had 12 inches of my small removed and resected. It was an emergency surgery done on vacation while in Akumal, Mexico. I had a complete blockage and abscess. Had it perforated I would not be here today. Those guys saved my life. They first thought it was my appendix so they took them out but they discovered them to be just fine. Thank goodness he had the knowledge to move forward in finding the problem, so he just opened me up lower and found a complete mess inside. I just know that I have never experienced any pain like I did then, I prayed for 4 days to die. My own gi cannot get over the history of my surgery in Mexico, it blows him away.lol. Gotta do what ya gotta do sometimes. One thing we know for a fact, my resection saved my life, but it did nothing to give me better quality of life. No way they would let me get on a plane in that shape. Hell, my surgeon had to give me a letter of recommendation saying I was fit for travel before I could get thru customs.
One thing that I have pondered on alot is 6 weeks before this CD surgery I had my galbladder out. I have seen on the CD forum that many had their gallbladders out and shortly thereafter were having bowel resections. There has been talk of them being connected.
The CD forum I joined in 02, back then we had a group on there that was the best. Over time the oldies disappeared one by one and then the new faces started popping up like crazy. Over time the attitude and overall atmosphere took a nose dive in my opinion. Back in the old days that forum had a group with a sense of humor second to none and lets face it, with any disease you gotta have humor and be able to laugh once in awhile.I hang here more than any place. I also hung out here back then too. I spent alot of time at HW.
I took asacol too and it made my hair fall out and the side effects got me. Then my current gi said well, Asacol will do nothing for where your crohns is located. Well, I looked it up and he was right. Yes, I took Pentasa too for a long time. My gosh swallowing one of those horse pills, 16 a day, no. I am on Entocorte and have been since 05. Even tho its a steroid I can tolerate it fine because it does not dissolve until it hits the small bowel. When he 1st put me on it, it was with much reservation because of my steroid issues. But he follwed me closely for 6 months and then relaxed. I had to in every week and that was 60 miles round trip and sitting in a car is real difficult for me as it kicks up my pain. I tried weaning off the Entocorte after being on it so long, I wondered if it was really still working or not, I found out yes it was, I never made it off and I was right back up to 3 pills every morning,lol. Did my own experiment. Then told him about it, he laughed at me told me I got what I deserved. They laugh and call me volume 3 in his office because of my charts being in volumes.
I was on Remicade pretty much as the first hand drug with my gi when I first went to him. There was not much left but the big guns. I did Remicade the 1st time for 3 years every 4 weeks. I had already started the Imuran which he says enhances the effects of the Remicade. Have you been on Imuran? It does help me. I have done Remicade on 3 different times in 6 yrs. But, after it inducing Lupus I am done with it.
I have done alot of reading on Cimzia and it is a drug that I would entertain trying if Humira fails me. So far its been very good to me and for the first time in 7 yrs we have found something that appeared to help more than anything.
With your statement that your rheumy sees more CD & UC people than your gi, thats a pretty good indication why you have have not been successfull in any way with your disease. I was shocked my rheumy knew so much, because so many drs just roll their eyes when you say CD. Its a look from Mars in their eyes. Learned early not all gi's are created equal and not all gi's knows squat about CD & UC. Using the old prednisone as the golden treatment is in the days of past. I do know of many prednisone dependant people that were able to get off the roids thanks to Remicade. After my GI said what he did yesterday abut the cross with gi's & rheumy's it makes sense to me now why my new rheumy knows so much about both dieases.
It very much sounds like your new guy is on the ball and may be can can bring some severely needed relief with your CD. My gi says CD is a very indivualized disease and the meds have to be tailored to each persons needs. It is a long drawn out process of trying till you hit the magic meds to feel better. Don't give up I bet this rheumy gets you feeling better.....Susie