Can't get help for Crohn's after 6 years

[justforthisnow]

I had a surgery for colorectal cancer in 2006. The surgery turned out bad, meaing I had a leak and septic shock (to say the least). Now, no local doctors will treat me, or they scan me and say nothing is wrong. One local hopital indicated I had Crohn's or Ileus. I sent my scans off to 3 other states, and all said the same, Crohn's, Ileus, infection and possible an anastomosis fistula. I guess there must be something on my record. I had my records "pulled" 2 years after the surgery because I could not get help then either. Nobody would look at me after this particular doctor did surgery on me. Does anyone know if I go out of state if I can get treatment? I've been to a dozen doctors here and they will not exam me or look at my scans, blood tests, results and so forth. In the meantime, I have had life threatening issues (which I was admitted to the hospital, I guess they had no choice) for bowel obstruction and total abdomin ecoli infection 2011. Please, help. I am so weak, tired and in so much pain. I have lost 25 pounds in the last year, and 50 since this all started, I was down to 94 pounds. I try to "drink" as many calories as possible, and eat what I can. But I need a GI doc that will help. I would even go out of the country if that was an option, but I don't know where to go.

 

[justforthisnow]

I forgot to add that the CT scan reviews were done by radiologists, so they do not have a practice and can't treat me.

 

[SarahBear]

Hi, welcome to the forum!

Is there any reason why the doctors won't treat you? Do they offer any explanation at all? Are you seeing gastroenterologists, or regular physicians? What did they say when you were admitted to the hospital?

 

[Angrybird]

Hello and welcome to the forum.

I was also wondering whether you are seeing GI docs or GP's and what reasoning have they given for not looking at your records or treating you'?

AB
xx

 

[justforthisnow]

They have never given me a reason. After being the hospital for a month, I didn't want to go back to the original surgeon, and tried to see others, one hospital told me they were not going to fix what Dr "X" had messed up. The others told me to go back to the original surgeon. The original surgeon however, would not even see me for a MRSA infection and told me go to my GP. Now when I go to GI doctors, they just tell me that they can tell nothing is wrong by looking at me without looking at my records. Now I have more CT scans that provide proof of my condition, but I've already gone to all the GI's in this area. I also found out the original surgeon put a "note" about me on my record, but it is a private note, and I can't get the note. I got his records, finally, and nothing was on them.

 

[justforthisnow]

One hospital that I went to for extreme pain and in several cases bleeding and no BM for 2 weeks said nothing was wrong, they always said nothing was wrong. The hospital that did identify the issue of Crohn's did not tell me and I did not find out until I requested my report. I was diagnosed with Crohn's in my twenties, but did not have issues with it until after the surgery. I gave the CT scans from the hospital that said "nothing was wrong" to 3 other radiologist that all identied Crohn's Ileus and possible fistula. The local surgeon is very powerful and connected to the local hospitals. At first, one doctor told me that nobody would ever say anything bad about his work because they could lose their medical license, but now it's been 6 years? I would think after 6 years that someone would take a look or help, but they won't.

 

[Angrybird]

Sounds to me that a formal complaint needs to be put to the medical board or whichever organisation you have over there as this behaviour from the docs is atrocious, to say nothing is wrong with you based on how you look rather than proper medical investigation is disgusting.

 

[afidz]

Hello!
I'm sorry you are having so much trouble finding a doctor. Is your GP still willing to help you? There has to be someone that is willing to help you. Can I ask where you live? Have you gone on the doctor reviews page here? Maybe you can find a doctor here if your willing to travel. If you are in the US ( I am assuming you are) I am pretty sure you can go to another state that your insurance is carried in. I have blue cross blue shield of Illinois, and I live in Texas and I don't have any problems getting anything covered. But I would call your insurance provider and verify with them.

 

[justforthisnow]

I am in NC, in NC, the doctors and surgeons run the medical board. My surgeon probably sits on it. I can go to any other state, but my original question was did anyone know if a doctor from another state would treat me. That is what I need to know. I went to a medical school out of state once and I was turned away without explanation. I don't mind traveling, but I will need medications and a minor surgery (most likely for the fistula), but I would hate to travel a thousand miles and get rejected again.

 

[afidz]

Do you know why you are being rejected?

 

[lisakuney]

Write a letter to the North Carolina Medical board, name names, give dates and copies of reports from your diagnostic studies. Explain the situation. They have to investigate. Hopefully you'll find some resolution soon.

 

[Ihurt]

I know here in Chicago Illinois there are some good hospitals, one being Northwestern Memorial hospital in Chicago IL downtown. I would call there and see if anyone would be willing to help. Your surgeon should be sued for how he is treating you, that is unacceptable! He screwed you up and now does not want to deal with it. That is awful. I hope you can find some help. Have you tried calling Cleveland clinic? They are also suppose to be very good.

I am in NC, in NC, the doctors and surgeons run the medical board. My surgeon probably sits on it. I can go to any other state, but my original question was did anyone know if a doctor from another state would treat me. That is what I need to know. I went to a medical school out of state once and I was turned away without explanation. I don't mind traveling, but I will need medications and a minor surgery (most likely for the fistula), but I would hate to travel a thousand miles and get rejected again.

 

[lisakuney]

If you can tell us what part of NC you are in, we could maybe help you find care. I have a wonderful GI in Fayetteville.

 

[wild_one353]

here is my advice
Turmeric Tea-
boil some water and add 1/4 tsp of turmeric and add a few shakes of pepper. cook on medium high heat about ten minutes, you do not have to drink the gritty stuff that settles to the bottom.

Resveratrol-
and buy this its resveratrol, http://www.iherb.com/Doctor-s-Best-Best-trams-Resveratrol-100-100-mg-60-Veggie-Caps/7593

or rather, its an herb that is high in resveratrol, get some empty pill caps and open the filled capsule to divide it up into fourths. now take one fourth the first day, wait two days, then take one half, wait two days, then start taking half of a pill everyday.

what this will do its eradicate some intracellular pathogens during the first couple of days and it will seem like you are getting worse, but what it is doing is finishing a fight that started a long time ago, where the bacteria won and entered your cells, now you are flushing them out. as the bacteria are killed, they will release some toxins that will irritate you momentarily and increase inflammation and diarhea.after a few days the fight will be over and you will have more energy and may have less pain. its is an autophagy stimulator, recent genetic studies show defects in autophagy pathway as a risk factor for crohns, so its a new drug target, and one of many issues in crohn's disease microbiology. also, studies in rats show Resveratrol can suppress tumor growth of the colon by about 80%, its just amazing stuff and its so cheap. 12 bucks for a 4 month supply. it also contains catechin and epicatechin, which is in grapes and chocolate, some of the most powerful antioxidants.

combining these two will give a very cheap way to improve your condition and suppress a great deal of your symptoms, but not all of them.

i have been dealing with crohns for almost 4 years and i have dabbled with drugs for perhaps a total of 2 months, ive never had any complications nor surgery either, even though i have access to all, i have great drug coverage i can get whatever i want for basically free, but i choose as natural as possible.

in addition to this i also employ some concepts from the specific carbohydrate diet which is basically low sugar diet no lactose(milk sugar) or sucrose(table sugar), and avoid some carbs like potatoes and corn. also it requires eating yogurt as an antibacterial.

also, as an antibacterial, buy some caraway seed and fennel grind them up in a blender or a coffee grinder then encapsulate them and swallow one or two with every meal. i once had ankylosing spondylitis and eliminated it in about six weeks with a low protein diet and lots of caraway seed and psyllium fiber, in addition to a low sugar diet. i had developed AS after i made a bad batch of home made yogurt, as i already had read so much about it, i knew it had connections to gut flora, and read about a low protien diet helping to get rid of it.

i wish i could eliminate crohns!! but for now its a pretty permanant disease, but i believe a fecal transplant can cure it IF it is done properly.

 

[Jaclyn]

Can't you go to the next closest large city and find a new physician there? Obviously if there is a note in your chart at the hospital, you wouldn't want to go to a doctor who is affiliated with the same health system that you had been using. When you go for your appointment, I wouldn't offer up the whole "blacklist" thing. Just take your records- the reports for the CT's, colonoscopy reports, most recent labs, and maybe your operation report for your colon cancer. Perhaps the inpatient records for the obstruction & infrection. And yes, doctors from out of state will treat you, however, I am willing to bet if you get yourself out of the area and see a doctor who is not affiliated with the hospital & surgeon, most doctors won't care about who the original surgeon *thinks* he is, and won't care about stepping on his feet.

 

[acheallova]

Hey just,
Welcome to the forum. I would like to reiterate what's been stated above. And add- your medical records are yours and you have every right to them. I'm curious about the "note", did you find any evidence of it in the records you did receive? I would most definitely go to the NC BOARD OF MEDICINE. They have to investigate all complaints. It just sounds as those something fishy is going on and as though you were shorted some medical records, like the hospital was c.t.o.a. by not revealing every part of your chart. Best of luck to you! Welcome again. -hugs-

 

[Bottomless mummy]

I have to say though and I'm going through the same thing, and I'm in Australia but most surgeons won't touch another surgeons 'stuff ups' post surgically. This has come from other surgeons I've spoken to. I'm sorry your going through what your going through I feel for you best of luck in your adventures.

 

[jlm]

I live in Canada and couldn't imagine a doctor not treating someone. It's their job no ifs ands or buts about it. I'm currently not feeling the best but all of my test results keep coming back pretty good, nothing that would indicate a crohns flare and my doctors are still keeping a close watch in me. I currently have two GIs that follow me. One is my reg and one is for TPN. I once felt that I wasn't getting adequate care from my reg GI and mentioned it to my family doctor and she lit a fire under her butt. It was great. I agree with Jaclyn, try going to the next largest city or find someone to advocate on your behalf like a social worker from the hospital.

 

[justforthisnow]

Thanks for all your help. I have found by getting my records reviewed out of state that I have a compromised anastomosis possibly from the original surgery or from the Ecoli cysts that I have had since. I'm hoping I can use this new information to go out of state and get some help. The local hospitals did not identify the issues or tell me why I was so sick all the time, it appears that I am either infected, or have a small leak that explains my constant high white blood cell counts, bleeding and weakness.

 

[justforthisnow]

I have to say though and I'm going through the same thing, and I'm in Australia but most surgeons won't touch another surgeons 'stuff ups' post surgically. This has come from other surgeons I've spoken to. I'm sorry your going through what your going through I feel for you best of luck in your adventures.

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.

 

[justforthisnow]

Can't you go to the next closest large city and find a new physician there? Obviously if there is a note in your chart at the hospital, you wouldn't want to go to a doctor who is affiliated with the same health system that you had been using. When you go for your appointment, I wouldn't offer up the whole "blacklist" thing. Just take your records- the reports for the CT's, colonoscopy reports, most recent labs, and maybe your operation report for your colon cancer. Perhaps the inpatient records for the obstruction & infrection. And yes, doctors from out of state will treat you, however, I am willing to bet if you get yourself out of the area and see a doctor who is not affiliated with the hospital & surgeon, most doctors won't care about who the original surgeon *thinks* he is, and won't care about stepping on his feet.

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 would have to not mind working after someone else. From what I have read, they can "stitch" the current anastomosis and repair it, others have wanted to remove my entire colon (in NC)! It seems just to scare me away.

 

[justforthisnow]

I live in Canada and couldn't imagine a doctor not treating someone. It's their job no ifs ands or buts about it. I'm currently not feeling the best but all of my test results keep coming back pretty good, nothing that would indicate a crohns flare and my doctors are still keeping a close watch in me. I currently have two GIs that follow me. One is my reg and one is for TPN. I once felt that I wasn't getting adequate care from my reg GI and mentioned it to my family doctor and she lit a fire under her butt. It was great. I agree with Jaclyn, try going to the next largest city or find someone to advocate on your behalf like a social worker from the hospital.

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.

 

[justforthisnow]

Hey just,
Welcome to the forum. I would like to reiterate what's been stated above. And add- your medical records are yours and you have every right to them. I'm curious about the "note", did you find any evidence of it in the records you did receive? I would most definitely go to the NC BOARD OF MEDICINE. They have to investigate all complaints. It just sounds as those something fishy is going on and as though you were shorted some medical records, like the hospital was c.t.o.a. by not revealing every part of your chart. Best of luck to you! Welcome again. -hugs-

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 to go to the hospital once when I was leaking Ecoli, I was dying, so they had to treat me, but usually, they will not do anything, no matter what the WBCs, infection indicators, temperature or anything. They give me antibiotics, and ask if I want pain meds (I say no), then they test me again and say infection indicators are down, send me home.

 

[justforthisnow]

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 and try not to mention a family practice doc, that will set up a red flag. I went to a very reputable hospital in Maryland a few years back, took records, listed no FP doc. Even though I had an appointment, they looked up my records then turned me away without an examination and would not explain why. I didn't have the CTs back then, so I hope that will help. I read once where a doctor put on a person's record that they had a mental illness that made them think they had issues (I wonder if something like this is on mine). But since I now have CTs (all reviewed out of state of course), maybe they will listen and help. I called a lawyer to see if I could find out what was on that part of my record, apparrently they call it a "peer review" and it is secret, meaning that you can't access it, not even the attorney can access it. And you can't make anyone look at you, the doctors can turn away anyone they don't want to deal with.

 

[justforthisnow]

Write a letter to the North Carolina Medical board, name names, give dates and copies of reports from your diagnostic studies. Explain the situation. They have to investigate. Hopefully you'll find some resolution soon.

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.

 

[justforthisnow]

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 Crohn's and in others it puts you in remission for a while. It's helping me eat, but still can't gain weight.

 

[justforthisnow]

Hello and welcome to the forum.

I was also wondering whether you are seeing GI docs or GP's and what reasoning have they given for not looking at your records or treating you'?

AB
xx

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 did see me, but did not diagnose me, she finally just said I needed my colon removed without a reason or diagnosis.

 

[jlm]

I'm pretty sure you can be treated in Canada if you are willing to fork over the cash. I doubt you're insurance company will want to cover it. It would be completely out of pocket.

 

[Jaclyn]

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 would have to not mind working after someone else. From what I have read, they can "stitch" the current anastomosis and repair it, others have wanted to remove my entire colon (in NC)! It seems just to scare me away.

I actually do not know of any CRS's in NC. I do love my GI though! I'm also completely biased b/c I used to work there, but I love Johns Hopkins- which is only a 5-6 hour drive from Greenville. If I had a more serious IBD and potentially needed surgery I would do my second opinion at JH.

 

[justforthisnow]

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 infection that lasted 5 months. One hospital (not JH) told me it was all mental. The cysts were disco)vered in 2007 by my FP doctor, but nobody would remove them. One was 4" across and it broke in 2011 and contained Ecoli, it infected my entire body and I got sepsis at that time. I was also refused by other hospitals that would not even look at my CT scans that showed them. The local hopital had to treat at that point, because I would have died. After paying for independent CT reviews, I now know my anastomosis (that leaked) from my original surgery was never "fixed" the doctor recorded that he could not access it. I also have a really bad case of Crohns, but can't get any meds for it. I'm hoping to get Entocort (sp) as my FP doc has tried sulfasalazine (sp) and Meloxicam (sp) but will not provide anything else without a GI doc and the GI docs so far will not help. Hoping for help in FL for the anastomosis and Crohns. From what I have read, you can get turned away from other hospitals if someone puts on your record you are a mental case. But I now have medical records to prove otherwise, although I'm starting to feel mental because I can't get help and keep dropping in weight.

 

[justforthisnow]

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 hard to take care of myself (bath cleaning and so forth), having difficulty thinking and making it day to day (driving, paying bills, everything really) and ideas? I really just need a doc that will help me. The inflammation is taking over my body, I have all the medical records (from out of state help), still living off savings, but if I have to travel again, I will. There was another person here that had a bad surgery and had to move to NJ because nobody would help her with medical issues. It seems like the doctors will not report anything if it's possible another doc was the cause (and if he was well known). Each day seems worse. One of the doctors that I spoke with from NY (reviewed my CT and was an onocologist radiologist) said I should be easy to control with proper medications, but he would not recommend another doctor. It does not seem like I should have to travel to NY or NJ for help, but if that's what I have to do, I will. I just don't want to show up at someone's door and get rejected again like I was when I made a 9 hour trip for help with the cysts (they refused to look at CTs or anything). I don't want to report anyone, I just need help.

 

[justforthisnow]

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.

 

[justforthisnow]

I live in Canada and couldn't imagine a doctor not treating someone. It's their job no ifs ands or buts about it. I'm currently not feeling the best but all of my test results keep coming back pretty good, nothing that would indicate a crohns flare and my doctors are still keeping a close watch in me. I currently have two GIs that follow me. One is my reg and one is for TPN. I once felt that I wasn't getting adequate care from my reg GI and mentioned it to my family doctor and she lit a fire under her butt. It was great. I agree with Jaclyn, try going to the next largest city or find someone to advocate on your behalf like a social worker from the hospital.

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. At the time, I was working full-time and couldn't get off work and obviously, that would not fix Crohn's or large infected cysts.

 

[lisakuney]

Are you close to Fayetteville?

 

[justforthisnow]

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 cysts, one ruptured, wondering if I don't have 2 more in there.

 

[justforthisnow]

Hi, welcome to the forum!

Is there any reason why the doctors won't treat you? Do they offer any explanation at all? Are you seeing gastroenterologists, or regular physicians? What did they say when you were admitted to the hospital?

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 cysts before they ruptured, I tried for 5 years, and they put that I could benefit from antidepressants and that nothing was wrong with me, even though I have tests to prove otherwise.

 

[justforthisnow]

Hello!
I'm sorry you are having so much trouble finding a doctor. Is your GP still willing to help you? There has to be someone that is willing to help you. Can I ask where you live? Have you gone on the doctor reviews page here? Maybe you can find a doctor here if your willing to travel. If you are in the US ( I am assuming you are) I am pretty sure you can go to another state that your insurance is carried in. I have blue cross blue shield of Illinois, and I live in Texas and I don't have any problems getting anything covered. But I would call your insurance provider and verify with them.

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.

 

[justforthisnow]

Do you know why you are being rejected?

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 contacted an attorney, and he said they had private "notes" that even an attorney can't see.

 

[justforthisnow]

Thanks to everyone for all your support!

 

[GutlessWonder86]

go to the American Medical Association and report him. google it for information that may help.

 

[GutlessWonder86]

http://www.ehow.com/how_6717801_report-medical-malpractice.html

this should help.

 

[justforthisnow]

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 abscesses (and showed me a record from the hospital stating I was supposed to follow up). Fortunately, I still have the original record that stated no follow-up was required. I have been to the AMA, they refer you to the local State Medical Board, which is run by the doctors. I will check out the link and see what it says. At this point, I need a CT scan. I have so much pain. But once again, no help.

 

[justforthisnow]

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.