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Posted 3/31/2009 3:15 PM (GMT -8)
I just got done talking with one of the researches who is studying the identification of genetic markers for ulcerative colitis. Although the words ulcerative colitis means "ulcer colon inflamed," UC is a diagnosis of exclusion after infectious and other causes are excluded.

Antibiotics can wipe out the normal bacteria and lead to their replacement with other bacteria such as Clostridium difficile which can cause colitis. I had taken antibiotics for many years, fecal transplantation worked for me, and so do probiotics. Although fecal transplantation was successful, I got another flare after being on antibiotics three times over the course of a year. There is a real possibility I was misdiagnosed. I could have antibiotic-associated colitis, and not ulcerative colitis. Of course, the only way to know for sure is to take antibiotics, get another flareup, and then be tested for C-diff--something I have no plans on doing on purpose.
Posted 3/31/2009 3:25 PM (GMT -8)
Yeah, Joy, if you were never tested for C. diff, I'd say it's a definitely possibility you had a case of it. I know that's not what is causing my problems, though, because I was tested for it (twice) and I wasn't on heavy antibiotics prior to having my problems.

However, antibiotic-associated colitis is also referred to as pseudomembranous colitis because the colon forms a pseudomembrane due to the infection. I believe this looks different than ulcerative colitis when a colonoscopy is performed.
Posted 3/31/2009 3:31 PM (GMT -8)
My GI told me that it didn't matter how I got colitis, I have UC now and it doesn't matter how I got it. My whole ordeal started out w/c.diff and I wasn't on any antibiotics. It took 3 months to get rid of the c.diff. Then 3 months later, I got c.diff again. I wasn't responding to the treatment so my GI did a colonoscopy and diagnosed me with UC. I still get c. diff about once a year. I've basically been flaring the entire 6 years since being diagnosed. I'm not really sure what the difference in having antibiotic associated colitis and UC would be. The symptoms are the same. C.diff is treated with antibiotics but most often they don't work so UC meds are used.
Posted 3/31/2009 3:47 PM (GMT -8)
Yes. My GI didn't seem to care how I got colitis either. He was more interested in getting the inflammation into remission. My colon was in serious condition.

I think an accurate diagnosis is important though, because it would explain why I don't flare as easily as others on this board, why fecal transplantation, probiotics, and diet work for me, and why no one else in my family has colitis.

It also means that I have to be particularly careful not to take certain antibiotics. Almost any antibiotic can cause this disorder, but clindamycin, penicillins (such as ampicillin and amoxicillin), and cephalosporins (such as cephalexin) are implicated most often. Other commonly involved antibiotics include erythromycin, sulfonamides (such as sulfamethoxazole), chloramphenicol, tetracycline, and quinolones (such as norfloxacin).

BTW, I was taking clindamycin, amoxicillin, erythromycin, and tetracycline.
Posted 3/31/2009 4:24 PM (GMT -8)
It very well could be that you have pseudomembranous colitis and not ulcerative colitis. A number of medical conditions — Crohn's disease, ulcerative colitis, bacterial infections and parasitic infections — can cause diarrhea and other signs and symptoms similar to those of pseudomembranous colitis. Because of this, you'll need tests to definitively diagnose pseudomembranous colitis and rule out other disorders.

Your doctor will likely order one or both of the following tests to help make a diagnosis of pseudomembranous colitis:

Stool sample. A laboratory evaluation conducted on one or more stool samples can detect the toxin released by C. difficile. False-negative results are possible with this test. Doctors sometimes repeat this test if it doesn't show the presence of C. difficile when there are strong reasons to suspect the disorder.
Colon examination. In a colonoscopy or sigmoidoscopy, your doctor uses a tube with a miniature camera at its tip. The tube is advanced through your rectum and into your colon, allowing your doctor to examine the interior of your colon for signs of pseudomembranous colitis. If you have pseudomembranous colitis, the exam may show raised, yellow plaques or lesions within your colon, as well as swelling.
Your doctor may obtain an abdominal radiograph (X-ray) if you have severe symptoms to look for complications such as toxic megacolon or colon rupture. A computerized tomography (CT) scan to get detailed images of your colon also may be performed. The CT scan can show a thickening of the wall of your colon, which may suggest pseudomembranous colitis.

He or she may also order blood tests, because an abnormally high white blood cell count (leukocytosis) may indicate pseudomembranous colitis.
Posted 3/31/2009 4:27 PM (GMT -8)

glamourgirl said...
My GI told me that it didn't matter how I got colitis, I have UC now and it doesn't matter how I got it. My whole ordeal started out w/c.diff and I wasn't on any antibiotics. It took 3 months to get rid of the c.diff. Then 3 months later, I got c.diff again. I wasn't responding to the treatment so my GI did a colonoscopy and diagnosed me with UC. I still get c. diff about once a year. I've basically been flaring the entire 6 years since being diagnosed. I'm not really sure what the difference in having antibiotic associated colitis and UC would be. The symptoms are the same. C.diff is treated with antibiotics but most often they don't work so UC meds are used.

You're GI is wrong, because if you have pseudomembranous colitis then it needs to be tended too, maybe you have pseudomembranous colitis as well and not ulcerative colitis.  Some docs are so lazy and un-informed but of course it's all at the risk of the patient, that's why it's important you take your health into your own hands, I know I wouldn't be satisfied being told I had UC when infact I had pseudomembranous colitis which is clearly different than having an IBD.

:)

Posted 3/31/2009 5:09 PM (GMT -8)

Also just because no one else in your family has UC doesn't mean that you won't/can't have it.  I am the only one in my family with UC and the only one with an autoimmune disorder.  There is a genetic marker for UC but that doesn't necessarily mean it's hereditary.

Sue

Posted 3/31/2009 6:59 PM (GMT -8)
When I first saw my GI, he had me give a stool sample and take a blood test. I did them the same day. The blood test showed that I had a high white blood count. I remember my GI mentioning that. He did not mention anything about testing me for C-diff. He didn't ask if I had taken antibiotics. I didn't mention antibiotics either. As I said before, he was more concerned about getting the inflammation in remission.

There is really no point in testing for C-diff now that I'm doing well. It might not even show up anymore.
Posted 3/31/2009 7:00 PM (GMT -8)

suebear said...
Also just because no one else in your family has UC doesn't mean that you won't/can't have it. I am the only one in my family with UC and the only one with an autoimmune disorder.


Yes. I know.

suebear said...
There is a genetic marker for UC but that doesn't necessarily mean it's hereditary.

Sue

Yes. I was told that we don't yet know what causes UC. I was also told that the best available information is that UC results from an interaction of genetic factors and environmental triggers. And I was told that UC is a diagnosis of exclusion after infectious and other causes are excluded.

This would make sense. If you didn't get colitis from infectious or other causes, then you probably are genetically predisposed.
Posted 3/31/2009 7:29 PM (GMT -8)
Even in people who are treated successfully, pseudomembranous colitis may recur in up to 20 percent of cases within weeks to months after treatment has been completed. You may need a second or third round of drug therapy to resolve your condition.

If your infection comes back, your doctor may treat you again with metronidazole. If it comes back still again, you may receive a prolonged course of vancomycin to get rid of the infection.

When you're not feeling well again I would aks the doc to do a better job checking things out especially in regards to C-diff. (pseudomembranous colitis).
Posted 3/31/2009 7:38 PM (GMT -8)

suebear said...

Also just because no one else in your family has UC doesn't mean that you won't/can't have it.  I am the only one in my family with UC and the only one with an autoimmune disorder.  There is a genetic marker for UC but that doesn't necessarily mean it's hereditary.

Sue


Genes are each of the factors controlling heredity. Carried by a chromosome which in essence is hereditary.  It's just with IBD the way it's passed is so complex mathematically unlike with cystic fibrosis for example where mathematically the way cystic fibrosis passed down is easily identifiable because there is only a single gene defect involved and the pattern of inheritance is such that the affected person with cystic fibrosis must receive 2 defective genes, one from their mother and one from their father, but in IBD it appears that many different genetic defects may be simultaneously necessary to produce diesease.  The mathematical pattern of inheritance as is the case in cystic fibrosis is simply not known in IBD, so transmission to offspring is highly unpredictable with IBD.
Posted 3/31/2009 7:43 PM (GMT -8)
Yeah, but you're forgetting that genes also just randomly mutate, so even though I may have a genetic defect that causes my UC, it doesn't mean it was passed down from one of my parents. Mutations happen all of the time...sometimes they're good mutations, sometimes they're not.
Posted 3/31/2009 7:46 PM (GMT -8)
Your GI never did a c. diff test?!?! Mine did them approx. 3 times during each flare! I wouldn't be surprised if you had c. diff. and it was just misdiagnosed as UC, especially since fecal transplantation and probiotics have made a huge difference. (probiotics have never impacted my UC)

Is clindamycin the acne antibiotic? Because a side effect of it is pseudomembranous colitis. I have the topical version and am so scared to use it just in case it absorbs into my body!
Posted 3/31/2009 9:18 PM (GMT -8)

bookworm21 said...
Your GI never did a c. diff test?!?! Mine did them approx. 3 times during each flare! I wouldn't be surprised if you had c. diff. and it was just misdiagnosed as UC, especially since fecal transplantation and probiotics have made a huge difference. (probiotics have never impacted my UC)



I don't know.

bookworm21 said...

Is clindamycin the acne antibiotic? Because a side effect of it is pseudomembranous colitis. I have the topical version and am so scared to use it just in case it absorbs into my body!



Yes. Clindamycin is for acne.

I took oral antibiotics.

I lived overseas and could get them over-the-counter.

I used to have this horrible skin infection. I used to have to go outside with this huge infection on my face that I took antibiotics for. None of the doctors knew what it was. Thank goodness, the scar from it is almost gone. The moon face is nothing in comparison to that horrible infection that I had. I didn't feel self-conscious at all when I went outside with the moon face.
Posted 3/31/2009 9:24 PM (GMT -8)

fruitgirl said...
Yeah, but you're forgetting that genes also just randomly mutate, so even though I may have a genetic defect that causes my UC, it doesn't mean it was passed down from one of my parents. Mutations happen all of the time...sometimes they're good mutations, sometimes they're not.

Gene changes that occur in the egg or sperm cells can be passed on

to children (inherited)

It is only when a mutation occurs in a gene in a man’s sperm or a

woman’s egg cells that the faulty gene can be passed on to the next

generation (inherited). As sperm and egg cells are called ‘germ

cells’, mutations that occur in the genes of the egg or sperm are

called germ cell or germ line mutations. Passing on the germ line

faulty gene (mutation) to a child may cause the child to have or

develop a genetic condition.

When the condition first appears in a family member it can

be due to a ‘spontaneous’ or ‘sporadic’ gene change that makes

the gene faulty that occurred in the egg or the sperm or during or

shortly after conception, for unknown reasons. In those cases:

• They will have that faulty gene in every cell of their body (see

Figure 4.3). That faulty gene may or may not cause a problem

for that person

• As their egg or sperm cells will also contain the faulty gene,

they in turn can pass it on to their children and their children’s

children. The faulty gene will now ‘run in their family’

• Other blood relatives of the affected person are not usually

at risk for having the same mutation that causes the genetic

condition as the ‘spontaneous gene change’ would have

occurred in the formation of the egg or sperm, during or

shortly after conception of the affected family member

Faulty genes that run in families (inherited)

A parent who has inherited from his or her parents, a change that

makes a particular gene faulty, has a chance of passing that faulty

gene on to their children. Whether their children are affected at

birth or later in life by a condition due to a change in one, or both

copies of a single gene, out of the approximately 20,000 different

genes, depends on the type and amount of protein that is usually

produced from the working copy of the gene.

faulty genes make a person susceptible to particular conditions but they will never develop the problem unless they are exposed to particular environmental triggers.

 

 
Posted 4/1/2009 5:43 AM (GMT -8)
pb4-I wasn't saying that both forms are treated the same. Yes if you have c.diff colitis and that's all it ever is-it is treated w/antibiotics. What I was saying is that mine started out as c.diff but turned into regular old colitis. My GI was saying that it doesn't matter how I got it, I now have it PERIOD! I still get tested for c.diff when I have really bad flares and am treated for c.diff if I'm positive. When I don't have c.diff, I'm treated for UC.
Posted 4/1/2009 7:13 AM (GMT -8)
pb4, you're not telling me anything I don't know....I have a PhD in plant breeding and genetics. What I meant was that the mutations that may or may not be in my genes aren't necessairly in my parents' genes.
Posted 4/1/2009 7:36 AM (GMT -8)
I'm going to do a stool test tomorrow, I have to pick up the kit today and hopefully it will shed some light on my diarreah.My stools have slowed today but b/c of the fissures I now bleed like my arm is cut off. It's terrible. I'm 5 days gluten,sugar,oat, corn and most dairy FREE, I don't miss eating the bread right now.  Second night back on LDN cream. I went to be with a sinus headache and woke up with it, the weather is changing here in Michigan. Glamgirl, I too have been flaring for almost 4 years straight except that 6 weeks when they said I was "healed" If I think about it too long, I cry, b/c I know it can't be good to lose tissue, blood, diarreah and then have accidents in my pants b/c I can't hold back the stool every day. I'm taking Allimed, (strong garlic) it's says it's suppose to help diarreah. We'll see, nothing in 4 years has helped. My GI will prescribe anything I want without seeing, finally yesterday when I called 3 times asking for antibiotics, prednisone and analpram, they decided to do a stool test. I'm just a number to them. When you mention UC in my town to any MD (trust me I've been to the only 3 we have) they don't want to help you they say see your GI, but my GI I can't in for two months every time, I feel by myself and have since day one. My marriage fell apart b/c of UC he didn't believe me for the first 3 years. I've been my own adovate.
Posted 4/1/2009 7:56 AM (GMT -8)
Dear Miracle
Your assumed name is miracle and you don't believe in MIRACLES. Don't worry and don't get disheartned. We are all here to provide you all kind of support. You will be fine and healthy. Lots of people have been able to manage their UC with diet control and life style changes. I feel Garlic may be a little strong, while you are flared up. That is what I feel or rather when I take garlic, I used to flare up. Try Turmeric, as I told you earlier. Please for heaven's save don't loose patience. You will be fine. If you take too much stress your immune system hits you back and the stomach/GI tract is the first thing which is hit by stress. So cool down. Take a deep breath in and out. Do it at least 10 times. Just meditate as if nothing has happened. YOu will heal. Keep me posted. You will be there in my prayers and thoughts. Take Care.
Posted 4/1/2009 10:31 AM (GMT -8)
Hopefully you get some answers from your stool tests. I agree, you have to be your own advocate. I've been to 4 GI's so far and I'm seeing my 5th one on Friday. I've driven as far as the Cleveland Clinic to see one of the top GI doctors. My issue is that as soon as I don't respond to normal meds, my GI's have always given up on me. They all want me to have surgery or start Humira or Remicade. I know there are other things that work for me and I refuse to not explore every avenue.
Posted 4/1/2009 10:55 AM (GMT -8)
Yes, pb4. There are many reasons why the colon can get inflamed. To assume that other people's colons flare for the same reasons as ours is not right. The symptoms are different. So are the causes.

It's kind of like if my knee was inflaming and yours was too. Perhaps you have arthritis and are prone to knee inflammations. Perhaps my knee got injured when playing hockey. To say that I am predisposed to knee injuries based on your symptoms and information about arthritis and inflammations is absurd.

[in response to a previous post]
Posted 4/1/2009 11:04 AM (GMT -8)

pb4 said...
It very well could be that you have pseudomembranous colitis and not ulcerative colitis. A number of medical conditions — Crohn's disease, ulcerative colitis, bacterial infections and parasitic infections — can cause diarrhea and other signs and symptoms similar to those of pseudomembranous colitis. Because of this, you'll need tests to definitively diagnose pseudomembranous colitis and rule out other disorders.

Your doctor will likely order one or both of the following tests to help make a diagnosis of pseudomembranous colitis:

Stool sample. A laboratory evaluation conducted on one or more stool samples can detect the toxin released by C. difficile. False-negative results are possible with this test. Doctors sometimes repeat this test if it doesn't show the presence of C. difficile when there are strong reasons to suspect the disorder.
Colon examination. In a colonoscopy or sigmoidoscopy, your doctor uses a tube with a miniature camera at its tip. The tube is advanced through your rectum and into your colon, allowing your doctor to examine the interior of your colon for signs of pseudomembranous colitis. If you have pseudomembranous colitis, the exam may show raised, yellow plaques or lesions within your colon, as well as swelling.
Your doctor may obtain an abdominal radiograph (X-ray) if you have severe symptoms to look for complications such as toxic megacolon or colon rupture. A computerized tomography (CT) scan to get detailed images of your colon also may be performed. The CT scan can show a thickening of the wall of your colon, which may suggest pseudomembranous colitis.

He or she may also order blood tests, because an abnormally high white blood cell count (leukocytosis) may indicate pseudomembranous colitis.

Please don't provide me with information I didn't ask for.

I'm not flaring. I have no bleeding, no mucus, no issues with gas, no bloating, no cramping... I'm not taking any medication for colitis. I'm not even taking Beano or Lactaid anymore. Not only do I have no plans to get tested for C-Diff now that I'm doing so well, if I do get another flare and want to find information about getting tested, I can look it up on the Internet myself.
Posted 4/1/2009 11:38 AM (GMT -8)
Nice attitude subdued, if you don't like my input then simply hit the ignore tab at the top right corner (it would be the thumbs down icon). Afterall this is a support group, wonder why if you're feeling so grand you are looking for support, makes sense as usual.
Posted 4/1/2009 1:46 PM (GMT -8)

pb4 said...
Nice attitude subdued, if you don't like my input then simply hit the ignore tab at the top right corner (it would be the thumbs down icon). Afterall this is a support group, wonder why if you're feeling so grand you are looking for support, makes sense as usual.

There you go, assuming again. I'm not looking for support. I'm on this forum to give help to others. I'm in remission. I'm not taking medicines. If I can help even one person reduce their inflammation or get into remission, then I've done something good. Of course, our conditions are not the same. I don't expect what works for me to work for everyone else. But we all are experiencing or have experienced inflammation of the colon. There are certain things that can help in reducing that inflammation. They won't work for everybody, but they can work for some.

Yes. It does take time out of my day to write on this forum. But it's a small price to pay to help someone else.

Your condition is not the same as mine. What works for me, may not work for you. But that's no reason to put it down [in reference to your previous disparaging comment on fecal transplantation].
Posted 4/1/2009 2:39 PM (GMT -8)
Don't put words in my mouth, not once have I ever said your condition or anyone eles for that matter is the same as mine yet you keep repeating that, and don't take out of context my remark on fecal transplantation because all I said was I wouldn't do it and by saying that it doesn't mean that no one eles should. Just because you can't have an adult conversation about veiws and opinions that are not the same as your doesn't give you the right to have attitude, I was not the only one that expressed my veiw about the gentic factor and IBD, others also stated they had a hard time believing it wasn't genetic. Singling people out that ask you questions that you can't give an explanation to so you just get attitude instead is not very supportive by the way.

In the past posts I was simply asking you questions about how you think you got UC and why you didn't believe genetics had anything to do with it and it obviously got you thinking didn't it or you wouldn't have started this post titled "possible misdiagnosis".

I have never put down anyone's methods of trying to find ways to feel better and you do have alot of nerve assuming that I did so.

Like I said, hit the ignore tab at your desire.

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