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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Help, diagnosed IBD Crohns changed to IBS


04-10-2015, 01:19 PM   #1
Hello2u
 
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Help, diagnosed IBD Crohns changed to IBS east coast usa

Was diagnosed with Crohn,s in my 20s, then again, 2008, 2008 and 2012. Changed docs, had colorectal cancer 2006 with not such good results, CT shows folds in stomach and small intestines, barium swallow similar. Now, arthritis, also have "tag" bleeding, LRQ pain, slow transit, abnormal BM, fecal blood, on and on. I can barely move due to pain. As soon as they mention a job, or my pain, it makes me cry! I can't help it, I've lost my job and activities, thus, now IBS and no Crohns meds. No GI doc in this area will treat me or look at previous scans. I live in NC, would it help to go to VA or SC? The harder I try, the more desperate I look and become! Now, no Crohn's meds for 3 years, falling apart. When I call a doc, they want my records and current FP who thinks I have IBS based on current opinions without tests. Help!

Last edited by Hello2u; 04-11-2015 at 07:19 PM.
04-10-2015, 03:18 PM   #2
StarGirrrrl
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If no GI will help in your local area then certainly look at going out of state for help.

When you get in with a new GI make it clear why you disagree with the change to IBS and back that up with previous test results and symptoms etc.

What made them change the diagnosis so drastically? How are the previous Dx and grounds for those explained away?

Things like fecal blood are not symptoms of IBS, how are they explaining those?

Apologies for all the questions i'm just trying to understand where your Drs are coming from and trying to find ways to counteract.

Really sorry to hear what you have been through!
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
04-10-2015, 03:20 PM   #3
nogutsnoglory
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That's outrageous. Blood is just one of the many signs that you don't have IBS. I'd fight for your right to proper cafe at all costs. sorry they arent taking you seriously.
04-10-2015, 03:22 PM   #4
buttER
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Hi there
I can't help you about where to go because I don't know the system in the US.
I really respect you because it is so hard to fight when you are feeling bad, and yet that is when you have to fight.
Do you have your previous medical records? If no, try and get them. Can you see the doctors who have diagnosed you with Crohns in the past? My experience is that the only doctor who takes me seriously is the one that found the problem, so I am sticking with him because at least he believes what he saw.
Good luck and keep fighting!
04-10-2015, 03:41 PM   #5
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After the "mishaps" from colorectal cancer, that's when problems started. I had tests done in another city that said Crohns, it's also in my medical record prior to cancer. I got the test and results from hospital. The docs had said for years that my hemoglobin in not that bad, so the blood is not an issue. I had it prior to cancer as well. I hired an attorney to pull records from one doc that would not give them over, but he sent letters to 2 docs, I sent a letter of apology to one. My FP doc at the time was worried that I was going to sue him, but he was always a great doc! He requested a letter stating I would not sue, and I provided it. He does not want to see me, but he would be the one that ordered the hospital records. It also shows up on an insurance record as crohns of small intestines after many many tests. I gave the CT scan to yet another GI doc, and it was dismissed. Now with the external symptoms, I can barely move. Prednisone helps in the short term, but other than pain meds, nothing else. Everywhere I call wants my current FP doc records, which only show IBS, and he does not want previous records. My former once fantastic FP doc, will not support me. I was told by one doc that no doctors would ever say anything bad or help me due the consequences of the surgery. Like I said, I never sued, but that letter is floating around, I've seen it when I've attempted to get my records. I can travel some, it would take a tremendous effort, but always end up in a circle, back to FP records, I have some copies, but they will not support me. One doc said he would give me a referral somewhere else, but they all want FP doc records directly from FP. It's a vicious circle I've been going in for years. These days, it hurts my hands and elbows to type!
04-10-2015, 03:52 PM   #6
buttER
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I am shaking my head in dismay.
Time to change FP, that is the person that should be trying to HELP you and listen to your side of the story.
I was lucky, it was my FP who helped me when the GIs just seemed to play pass the parcel with my records and did not want to believe what was written in them.
I had to change FP recently due to moving house, and I asked for an appointment before registering to check that the FP was willing to take my case. No point having a FP who does not take your health seriously.
04-10-2015, 04:00 PM   #7
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I've tried different FP docs, no help at all, although he gives me referrals, it's the GI docs that won't do anything. The GI doc that did my surgery is very high on the ladder so to speak, many GI docs told me to go back to him. After the surgery, he was not interested in me coming back and told me to see my FP, I looked rough, had a raging MRSA infection oozing in gut, in wheel chair, I guess he didn't want other patients in office to see me? I don't know. I need to find a GI out of state, but that's hard, especially if they want procedures done and I have to get someone to take me. I was thinking I could try to hire a nurse or something if I had to travel far if I could find someone that would look at my scans and results without FP doc. Was looking in VA, SC, even MD, called one hospital, went around in circles about the FP issue, his records only show IBS, I know it does not help that I cry so much, but it's the pain and years of pure desperation.
04-10-2015, 05:04 PM   #8
StarGirrrrl
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I understand the thought of travelling for tests and appointments is daunting, I have faced it, (and overcome it,) myself.

I think you have exhausted the possibilities locally and need to travel despite the difficulties.

Like hiring a Nurse, you could stay in a motel (ask the to supply extra toilet paper in the room), things like that, it may be hard but there are things to mitigate it.

Obviously the FP records stating IBS exist, but you have the opportunity when seeing someone not local to explain the whole sorry mess. You can go into your current symptoms and highlight how they do not fit IBS. Take all the records and insurance records you have which don't show IBS also!

I live in the UK so hopefully soon someone from the US will be along to offer better advice.
04-13-2015, 10:14 AM   #9
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I was diagnosed with Crohn's several times, last time 2011, CT, X-ray, MRI, all the scopes, barium, now have new doc. He sent me to new GI doc. I took my records and previous meds, doc changed to IBS and recommended fiber. Now positive blood tests, abscess ruptures, former stage III Cancer arthritis, mouth sores, pain, weight loss off 50 pounds, can't get help in this state. Possibly due to unfortunate events with stage III colon cancer. Where can I go where I won't be documented as "mental", yeah, I'm mental as well due to all the issues. I would travel out of US, but have nowhere to stay. I have trouble traveling as well. Please, do you know, really know a caring GI doc that will not turn me away. Since my current records say IBS, that's an issue as well, I have copies of previous, but nobody will look at them.
04-16-2015, 03:15 PM   #10
buttER
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I don't know how it works in the US: are there private practitioners who you can contact directly and ask if they can help you? In the UK there are a few and you can tell through the websites if they are willing to take on such cases - the websites also give an indication of the interests of the doctor too and their level of understanding or their philosophy for treatment of the disease.
I wish I could fight this with you!
04-16-2015, 05:03 PM   #11
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Thank you, I have a GI doc that has agreed to look at my prior records and I'm holding my breath! I have sent some of my CT scans, bariums contrast and so on off for second opinions, they also agree with Crohns, but docs won't look at those either. I really wish I had someone here that could understand the extreme pain and weakness and help me, it's been going on for years! I really feel like giving up, and with my increased weakness, if I don't get help, I will end up "giving up" without a choice.
04-17-2015, 03:02 PM   #12
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Hi

I'm in the exact same situation. Its literally killing me. Hang in there they will have to do something soon.
04-18-2015, 04:23 PM   #13
buttER
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Thank you, I have a GI doc that has agreed to look at my prior records and I'm holding my breath! I have sent some of my CT scans, bariums contrast and so on off for second opinions, they also agree with Crohns, but docs won't look at those either. I really wish I had someone here that could understand the extreme pain and weakness and help me, it's been going on for years! I really feel like giving up, and with my increased weakness, if I don't get help, I will end up "giving up" without a choice.
I really hope the new doc will help. Have you got an appointment some time soon?
It's amazing how much the body can take. Keep going girl! What do you find pleasure in, no matter how small?
04-19-2015, 03:49 PM   #14
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Hi

I'm in the exact same situation. Its literally killing me. Hang in there they will have to do something soon.
It's been 9 years, they will not do anything, thinking about another country, don't know where to start, can barely eat at this point.
04-20-2015, 08:51 AM   #15
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I'll in the UK, so I'm not familiar with your healthcare system. But I can't see why you should have to travel. I have travelled for hospital appointments; I've been to London because my local consultants felt I was beyond their expertise. So these were exceptional circumstances, and once the London specialists had done all the tests they wanted to do, they referred me back to my local consultants so I no longer have to travel - the London doctors communicate with my local ones, but I only see the local ones in person.

So unless your case is too difficult for your local doctors to manage, I can't see why you should have to travel. Surely your state is obliged to provide you with adequate healthcare?!

How recently were your last tests? Again, I'm not sure how it works with your doctors, but I've always found doctors want to issue their own tests rather than rely on those done by other doctors, especially if the existing test results are out of date. Is your GP (family doctor?) able to issue tests? If you can get new tests showing objective evidence of a problem (Crohn's or anything else) then wouldn't a GI have to take your case and treat you? (Though I wouldn't want to see a doctor who had previously refused to treat you, I'd want a new one.)

Even if you can get blood or stool tests done they might provide enough evidence to prove you need more care than you're currently getting.
04-20-2015, 08:55 AM   #16
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I don't know how it works in the US: are there private practitioners who you can contact directly and ask if they can help you? In the UK there are a few and you can tell through the websites if they are willing to take on such cases - the websites also give an indication of the interests of the doctor too and their level of understanding or their philosophy for treatment of the disease.
I wish I could fight this with you!
That's not been my experience of private consultants in the UK. If you want to see a doctor privately, you still need a GP referral. Though I've only seen private consultants a couple of times, so maybe there are some who work differently. But on the other hand, I have consultants I see on the NHS who I can see just by ringing their secretary without needing to go via my GP.
04-20-2015, 07:32 PM   #17
Hello2u
 
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I'll in the UK, so I'm not familiar with your healthcare system. But I can't see why you should have to travel. I have travelled for hospital appointments; I've been to London because my local consultants felt I was beyond their expertise. So these were exceptional circumstances, and once the London specialists had done all the tests they wanted to do, they referred me back to my local consultants so I no longer have to travel - the London doctors communicate with my local ones, but I only see the local ones in person.

So unless your case is too difficult for your local doctors to manage, I can't see why you should have to travel. Surely your state is obliged to provide you with adequate healthcare?!

How recently were your last tests? Again, I'm not sure how it works with your doctors, but I've always found doctors want to issue their own tests rather than rely on those done by other doctors, especially if the existing test results are out of date. Is your GP (family doctor?) able to issue tests? If you can get new tests showing objective evidence of a problem (Crohn's or anything else) then wouldn't a GI have to take your case and treat you? (Though I wouldn't want to see a doctor who had previously refused to treat you, I'd want a new one.)

Even if you can get blood or stool tests done they might provide enough evidence to prove you need more care than you're currently getting.
Here in most cases, including all hospitals I've tried, u have to get GP referal unless u r near death, been there when abscess of 5 years ruptured and contained E Coli, hospital would not remove or test. Further, I had 3, only 1 ruptured. Feel like I'm waiting on next time bomb. My mom is from England, but I don't know anyone there. My insurance probably would not cover. I can buy a ct scan if I go out of state.
04-20-2015, 11:55 PM   #18
Catherine
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UK Option. If you are able to get a UK passport, I believe you would be covered under the NHS. I do know Australians who have been able to get a UK passport as one of their parents was born there.
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Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-23-2015, 12:35 PM   #19
Hello2u
 
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interesting, I had looked at dual citizenship, but it required me to work there for 2 years. Thanks for the thought.
05-04-2015, 10:31 AM   #20
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I am so sorry to hear you are going through this, and I totally understand. My whole life they kept telling me I had IBS, bad nerves, or that my problem was due to hormones. All with no diagnostic testing at all even though ulcerative colitis, crohn's and colon cancer run in my family in a HUGE way! My symptoms used to be mild and would come and go until 2010 when they became very severe... costing me my job, my relationship, my freedom to leave the house... I had horrible pain, mucus and blood which are not from IBS, but the doctors told me I didn't need a colonoscopy or any other diagnostic procedures. I finally gave up and tried to self treat for years with some success by changing diet and using a controversial "herb" which might have medicinal benefits ( I don't feel I am at liberty to say exactly what that herb is in this section and it is not legal in every state for medical use... you can figure it out I'm sure). I have been much better off but not always well, and recently started to flair because the "herb" is just too expensive for my budget at times, and again started hearing the same BS about IBS and nerves so I ended up switching docs... to make a long story short... I have since been definitively diagnosed as having crohns, and in addition the new doctor looked at past records and found that I had something called a cecal vuvulous ( twisted gut around the area of the cecum) which can twist and untwist at times and cause horrible pain and also be life threatening. To make matters worse, my new doctor did find evidence of the cecal vulvulous from a previous cat scan done years ago, after which I was told I only had a gall bladder issues and if I had the gall bladder out I would be fine. New ultrasounds reveal very little wrong with my gall bladder at all other than a few tiny stones. It is within normal size and functioning well, and furthermore, this doctor is telling me if I had listened to the other doctor and had my gall bladder out I would have been far worse off, not better! I am telling you what I went through first so you know you are not alone, and secondly so that you and anyone who reads this and is faced with similar challenges will do whatever it takes to get a good doctor and a proper diagnosis, otherwise the consequences can be very severe or life threatening. Also, educate your self as much as possible... had I not done this I would have just listened and accepted whatever I was being told, and I would have been far worse off, or even dead by now!
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