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I took Linzess for chronic constipation, it helped for a while but is also crazy expensive. Also took Rifaximin before as well, it helped for a while then stopped.

Oh, my doctor also stated that other docs may not want to help me for fear that I will sue them. I did not sue the prior doctor, but I did think about it.

I'm back, took my records to FP doc hoping to see an infectious disease doc, according to the Surgeon I have total body infection. My FP doc refused, and wants me to go back to the hopital that won't help me. He indicated that I did not follow-up after the last E coli leak from ruptured...

Thanks to everyone for all your support!

I think that it is due to the bad surgery. I have not been able to get any help from another GI doc since that surgery. I had no issues before. If I even mention the man's name, they practically run me out the door. He also put a note on my record, but it's in the "private" section, I even...

I live in NC. I should mention that I have problems getting a specialist/sugeon to help me with anything, my FP doctor does help.

They would not tell me anything, something is on my records from the first surgeon. Even though I've had 5 surgeries now, including emergency visits with E coli cysts ruptured, I suspect they have put I'm a mental case on my records, I found some wording when I was trying to get help for the...

Yes I am. I have discovered however, that I may need an infectious disease doc. I had E coli cysts rupture in 2011, and apparently, I'm still infected. I was able to get meds for Crohn's (yeah!), Entocort and Refaximin. Now I need to figure out where the infection is located, I had 3 E coli...

I did send a letter to the risk management department of the hospital when I had many trips to ER about the cysts, after the ecoli cyst rupture, since they had told me for years it was "in my head", they sent me a rude letter back stating they had recommended pool therapy and that I did not go...

Does anyone know a good Crohns doc in SC or NY? That would be easier for me to travel. I have friend in Myrtle Beach and my niece will go with me to NYC (especially), because she likes it so much. Any advise? I would need to send records in advance to prevent getting turned away.

Does anyone know if there is a higher authority other than NC medical board? I've heard here that will get you blacklisted even more. I guess when I return from FL for the anastomosis I will have to immediately look for help for Crohns due to continued weight loss and weakness, it's getting...

Well, if this was not a public forum, I would post my experience with JH. I had several large cysts (from the original surgery) and could not get help for them either. I went to several places that turned me away. I told the hospitals that it felt like the MRSA pain from my first MRSA...

I've been going to GI docs, apparently, I have needed to go to colorectal surgeons. They are the only ones that can treat this condition. But the GIs just telll me to go back to my original surgeon. But apparently, they could not treat me anyway since the condition requires a surgeon. One GI...

Oh, one more thing, I have found that Refaximin helps for all, including Crohn's strictures, fistulas and so forth, I finally got a sample of it and it does help! However, my FP does not approve and said to stop taking it! Read the studies done on it, in some cases, it sounds like it cures...

Thanks for the advise, but my surgeon probably sits on that board, they find most of the complaints as "trivial", not in the favor of the patient. I've also heard that can get you blacklisted even worse! If I can get help out of state, I will go that route.

One surgeon has asked for my records, in Florida. They usually will not look at them so I see this as a very good sign. I'm really hoping they help me. I told my FP doctor I was going, I'm hoping he will support me since he knows I can't file a law suit and I really need the help. If you go...

The NC Medical Board is run by the doctors. I would not be surprised if the original surgeon sits on the board. I had requested a copy of my records (with weight and blood tests), one had a little box marked "comments" at the top. The surgeon that did surgery #1 & 2 had made a comment. I had...

Oh, you have no idea how much I wished I lived in Canada. I wish I could get health care there and pay for it, but I've heard American's can't do that.

That is next on my "journey". I have found a surgeon in FL right now at a very reputable hospital, he is looking at my records. I'm really hoping that they will be willing to help me. I also thought about trying SC as well. Do you know any good reputable colorectal surgeons? I guess they...

So how do you find one that is willing to work on you after you have had a bad surgery? I'm still dropping weight, soon they are going to say I'm too thin.