I'm here for a WHILE!!! Doctor Update!!

Well my doctor came in and talked to me for a good while. We talked about what my options were. He showed my pictures of this stuff on my bowel to several other general surgeons and none of them knew what it was either. He's going to show it to the GI doctor that had been involved with my case a few previous times to see if he may know what it is. The thing about this fibrosis stuff is that it doesn't just "show up". Something has to cause it to be there. That's what we're trying to figure out right now. Plus, he told me that this picture is only showing like 10 inches of that bowel and all this white stuff is spread out and down like 150 cm worth of bowel!!!! So it's not as easy as going in there and resecting just 10 inches.........there's 150 cm of it!!!! So no resecting it........even if they wanted to so we can't just "get rid of it". He said that my options were this: We could try this endometriosis medication in case it is indeed endometriosis. Or I am going to be here for a while waiting on this to either go away or for someone to figure out what it is and fix it. And three, I could go to skilled nursing some where closer to my home and receive meds and TPN/hydration, but that doesn't help find a solution to the problem or get it better. He is going to give me over the weekend for me to think it over and decide what I want to do and he'll go along with that. I'm really and truly getting scared about all this. We don't know what in the world has caused this stuff to be all over my bowel and it is most definitely got to be the cause of all the pain and we can't just go in and take it out because it involves 150cm of the bowel!!!!! He can't go in there and take out that much. Shoot, I have that much bypassed so I can't lose 150cm more! Anyway, just thought I'd give ya'll an update. Thanks for listening! You all have been so supportive of me and I thank you guys SO MUCH! Allie

Holy crap! Are you game for getting any second or third opinions? This is extremely harsh!

Yeah it is extremely harsh!! LOL My surgeon has taken this to several surgeon's so far and none of them know what it is. So we may be on tenth opinions by now! Seriously, we are bringing in everyone we can think of. A GI doctor that was working with me at the beginning of all this is supposed to be coming in tomorrow to see if he knows what this is. Allie

Wow, tough decisions...did they do a biopsy to send to pathology to get a better idea of what that stuff is?

Allie, Sorry I didn't read the earlier post before I replied about the biopsy. Have they gotten any more pathology results back on it yet? I sure hope they come up with something.

No there has not been anymore pathology on it. I don't think we were expecting anymore. That was the final report. He did mention something about maybe going in there and taking a bigger piece to look at since they only took a little scraping from it this last time. I don't know if I want them to keep going in there time after time. SO, I will just wait to see if we get anymore answers from any of these other doctors and see if this medicine that he was supposed to start me on does anything. Thanks! I hope they come up with something too!! Allie

Allie please see if your dr could do a phone consult with Dr Frantzides he does lots of surgerys and he is an amazing surgeon with many other things including bowel! I would just see if he would give his expertise to you surgeon. Tell him I mention how great he was and he would probally at least consult. Worth a shot and he may just know what it is. He really cares about the patient!! Constantine Frantzides, M.D., PHD, F.A.C.S. Chicago Institute of Minimally Invasive Surgery 64 Old Orchard Center Skokie, IL 60077 Phone: (847) 676-2200 Fax: (847) 676-1813 Visit Website Map It

I wonder if they have a toll free number so that maybe I could call them and talk to them. Or maybe, if you'd be willing, could call them since you know them and I could give you my number here in my hospital room and maybe you could have them call me, because I can't call long distance from my hospital room. My hospital room # is 214-818-7107. Thanks Dee!! Allie

Allie I emailed him right now with the information you gave me and also your hospital number and your profile address. I will pray that he calls you. He is a great surgeon *****ally cares so I think he will try to help. I would also tell your surgeon about him and maybe he will want to call him for a peer talk. Who knows maybe this will be the day someone can figure out what is wrong. dee

hey allie how are you doing? I never heard anythng from my surgeon was wondering if he called or if you got in touch with him? Hope your doing better dee