# Horrible situation



## protitis

I am 30 year old male. About 8 years ago i began to notice mucus and blood in my stool. Sometimes it was mixed with stool other times it was just mucus with no stool (with or without blood). I hardly ever had diarrheah and my stools were fairly consistent. There wasnt lots of blood it was blood tinged mucus. This would occur randomly over the years. But it has not gone away. Recently i began to suffer a feeling that my bowels were not empty even right after i had emptied them. I am having 1-3 stools a day but the feeling is constant and very upsetting. There is also mild discomfort in my abdomen and a bit of itch and pain in the anus itself at times. 

I would like to have a calprotectin test. Will this give me a more definite answer as to whether its ibs or proctitis? 

I am thinking the worst at this point. How likely is it to be ibs+hemmorhoids vs proctitis?

unfortunately i have to wait to get the calpro test so in the meantime i continue to suffer.

is the test kit available online?


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## protitis

I am also terrified of sigmoidoscopy. I have read how painful it was for many people. So i am hoping the calpro will give me the answers.

If the calpro comes out with high levels then its very likely proctitis. If the result is low, then its not likely. Is there any reason why it would come out low? i have read the test is quite accurate. If there is any inflammation, it should come out on the test.Especially if its a serious case of ulcerative colitis. Even with proctitis it should come out:sign0085:


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## FrozenGirl

Welcome! 

A Cal protein test should get some more specific results but not guarantee. It needs to be ordered by a docotor. 

I have had 3 or 4 sigmoidoscopies. All of which I opted for sedation and was asleep and  feeling no pain. Even for those choosing no sedation just pain meds I haven't heard bad things. Sigmoidoscopy is just the lower sigmoid colon so no real curves which for a lot of people is where the pain comes from.  Also for me (may vary) prep was way easier. 

Good luck.


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## protitis

so how likely is it proctitis? will the calprotectin give me the answer? its not a guarantee but if you have say two calprotectin test in a row and they are both negative then chances are its not ibd. But it could be ibd and in that case my life is over.


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## 24601

I know the waiting is hard and the potential diagnoses are frightening but even if you do get a diagnosis of IBD your life is not over. It may be different but it definitely is not over. And if you find a treatment that works well for you then your life may not even be that different.

Try to hang in there and not worry too far ahead.


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## protitis

is it true that if i wait like this without getting any treatment, the proctitis can spread upwards and become ulcerative colitis? 

Thats what i read somewhere.

what happens if its left alone? does it not go away automatically? i know it eventually comes back but does it require medicine to make it go away first?


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## Lady Organic

Hi there, I think it is more than important you have a consultation with a gastro-enterologist asap. In case of an Inflammatory bowel disease (IBD), the more one waits without treatment, the more damages one risks getting to the intestine (disease extension, complications, extra-intestinal manifestations, colon cancer, etc...). calprotectine is one screening tool, but a GI will definately want to see your inside with the symptoms (blood and mucus) you mention. Coloscopy can sometimes be painful, true, but the procedure lasts only a few minutes and you forget all about it, on your way home. life doesnt end after a IBD diagnosis. We get treatments and many live great life, symptoms free. hemmorhoids can be concommitant to IBD. With increased pressure from frequent stool passages, the anal veins can become irritated and therefore become swollen, inside or outside. (so never force to evacuate, this can only aggravate the anal veins if H is the issue). The feeling of mild H can be constant pressure in anus, like you feel a small ball stuck inside, itching is another symptom. its annoying, I know the feeling!


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## buttER

I understood that calprotectin levels only really increase for inflammation higher up in the small intestine or beginning of the large intestine. But I could be wrong. I would not rely on that test alone, I had inflammation but my calprotectin levels were normal. I agree the best thing to have is a scope, that would give a far more reliable picture. Don't worry about any pain, ask for sedatives/painkillers and remember that the procedure does not take long. You can try and distract yourself like counting to 100.
Great comments from Lady Oganic.
Try not to worry too much about things that might or might not happen. I hope you find a good doc to help you.


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## alice75

I have have 2 sigmoidoscopies without any sedatives.  There is one curve the scope passes and that part is very uncomfortable but it is quick.  I wouldn't hesitate to have another with out sedation.  I prefer them to the colonoscopies because the prep is less intense, it can be done in the doctor's office and you don't need a driver.


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## protitis

Lady Organic said:


> hemmorhoids can be concommitant to IBD. With increased pressure from frequent stool passages, the anal veins can become irritated


hemmorhoids does not cause IBD


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## Lady Organic

concomitant means it can be associated with, not causing it.


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## POTTYTIME!

Protitus:

I can tell you from my experiences,  I had the same blood/mucus symptoms for about 2 years.   I just blew it off to hemorrhoids.  I had diarrhea 5+ times a day though.

Recently DX with Crohn's.   But all the waiting I did, I have been in a major flare since November.   Had to have my gallbladder removed due to the Crohn's.   I am on meds to no avail.   So now im waiting on CT SCAN results to schedule a resection and fistula surgery.   I feel like im setting on razors.   I look like im expecting a baby with the swelling.   I have accidents on myself sometimes.  

So please get looked at ASAP.  The longer you wait, worse the damage.  

Current meds :

Humira injections every 14 days
Pentasa 4000mg a day 
Prednisone 20mg a day " started taper on Friday "
Nexium 40mg a day
Bentyl 60mg a day
Norco 10-325 when needed
Liquid Omega 3 800EPA / 500DHA
Chamomile oil
Jarro-Dophilus EPS probiotics


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## protitis

POTTYTIME! said:


> So please get looked at ASAP.  The longer you wait, worse the damage.


can you stop scaring me please? what damage? i have not even been diagnosed yet.

how much blood did you get? blood is usually from hemmorhoids which is much more likely than crohns.


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## POTTYTIME!

Not trying to scare you.  If you read any medical papers, websites,  etc.  If you have blood in stool then that is a cause to to be seen by a doctor.  I blamed the blood I passed for 2 years on hemorrhoids.  Just to find out it was crohn's,  and now I have to have surgery.   Passing blood from your booty is a cause for concern,  due to the many things it can implement.   

The amount of blood I had was different at different times.   Some times just when I wiped it was on the paper.  Sometimes it would be mixed in the stool.  Sometimes it dripped from my bum and looked like cherry koolaid in the toilet.

Please dont take what I say the wrong way.  This is a place to get information and read peoples real life problems with this disease.  This disease has hampered my way of life for quite sometime now.  I tend not to hold back.  Sorry


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## protitis

POTTYTIME! said:


> Not trying to scare you.  If you read any medical papers, websites,  etc.  If you have blood in stool then that is a cause to to be seen by a doctor.  I blamed the blood I passed for 2 years on hemorrhoids.  Just to find out it was crohn's,  and now I have to have surgery.   Passing blood from your booty is a cause for concern,  due to the many things it can implement.
> 
> The amount of blood I had was different at different times.   Some times just when I wiped it was on the paper.  Sometimes it would be mixed in the stool.  Sometimes it dripped from my bum and looked like cherry koolaid in the toilet.
> 
> Please dont take what I say the wrong way.  This is a place to get information and read peoples real life problems with this disease.  This disease has hampered my way of life for quite sometime now.  I tend not to hold back.  Sorry


but some people have said they went undiagnosed for many years. If thats the case whats the urgency? I would rather not know about it than find out I have it.


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## protitis

but you said you had diarrhea 5 times a day too. Do you know how much of the population get IBD? and how many get IBS or hemmorhoids? If you look at the figures it is much more likely to be hemmrohoids. Obviously on a forum like this you will only hear from the people who have it so it is biased. So until i have been diagnosed i would like to avoid being alarmed.


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## 24601

No one here is trying to alarm you and the advice people are giving you to get your symptoms checked out is good advice.


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## POTTYTIME!

Im sorry, thought you was in here looking for information, possible answers, life experience, something to compare yours too.  I do think that blood in the toilet is a cause for some alarm due to the fact it is not normal for one, and you cant see where it is coming from.  I dont think many people in here will candy coat "life experience" in here.


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## POTTYTIME!

Thank you 24601.


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## Lady Organic

protitis said:


> but some people have said they went undiagnosed for many years. If thats the case whats the urgency? I would rather not know about it than find out I have it.


Ultimately thats your choice. But please re-read my first post explaining possible risks of untreated ongoing chronic inflammation. 

It is important to understand that we are not doctors, we are IBD patients who share experience and advice. We cant help you diagnose your situation. Only doctors can do that. It is only wise and responsible of us to advice you to seek medical attention. best wishes.


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## UnXmas

What makes you think you may have proctitis? Proctitis is not really a diagnosis, it is inflammation of the rectum and anus, and can be caused by many different medical conditions.



> is the test kit available online?


Please don't attempt to diagnose yourself. What country are you in, if you don't mind my asking (knowing where you are, others can advise you on the healthcare  system)?



> But it could be ibd and in that case my life is over.


No it isn't. It really isn't so don't think that. See a doctor and try to get some answers and some treatment. Whatever is wrong with you is probably treatable. People do go undiagnosed for years, but by seeing a doctor you may get definitive answers, you may get relief from symptoms - you may even get complete relief from symptoms. Is the chance of any of those things not worth finding out?


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## protitis

Lady Organic said:


> Ultimately thats your choice. But please re-read my first post explaining possible risks of untreated ongoing chronic inflammation.
> 
> It is important to understand that we are not doctors, we are IBD patients who share experience and advice. We cant help you diagnose your situation. Only doctors can do that. It is only wise and responsible of us to advice you to seek medical attention. best wishes.


you are speaking about worse case scenario. Cancer is a higher risk with IBD even when you are being treated. Plus some people went undiagnosed for many years and when they did get diagnosed, they were still alive and well.


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## protitis

UnXmas said:


> What makes you think you may have proctitis? Proctitis is not really a diagnosis, it is inflammation of the rectum and anus, and can be caused by many different medical conditions.
> 
> 
> 
> Please don't attempt to diagnose yourself. What country are you in, if you don't mind my asking (knowing where you are, others can advise you on the healthcare  system)?
> 
> 
> 
> No it isn't. It really isn't so don't think that. See a doctor and try to get some answers and some treatment. Whatever is wrong with you is probably treatable. People do go undiagnosed for years, but by seeing a doctor you may get definitive answers, you may get relief from symptoms - you may even get complete relief from symptoms. Is the chance of any of those things not worth finding out?


what makes me think its proctitis? because the severity of the symptoms is related to the severity of the disease. My symptoms are minimal. and i can feel something in the anus, within the last few inches. and you dont get long term protitis unless its IBD.

I will be having a calprotein test soon. But why cant i just begin treatment anyway? if its IBD the foam will work. If its not, then it wont kill me will it?


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## POTTYTIME!

The "SOMETHING" you feel in you anus, maybe a fistula.  All the reason to get checked.  I was saying the same things you are.   After getting checked,  im getting set up for surgery.  That "SOMETHING" in my bum is a fistula that has to be operated on.


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## lisadc1

Protitis, people that live with Crohns can have hemorrhoids, as well as people in general. And that can also require surgery, depending on the severity. There are so many factors and possibilities of what you are experiencing. And you will only know if you go to the dr. I agree with the others who are trying to be supportive here. You really need to seek medical from your dr. and the tests run, like someone says depends on which country you are from. Reading different advice from others does get scary, but each of us living with Crohns/Colitis have stories and experiences to share. Although I have not been a member here long, the support, advice, etc. has helped me to better educate myself, learn my body better, and to  better communicate with my GI to get the best treatment. Use what you can learn from here from those who bravely conquer each day, praying for good health results for you...


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## protitis

POTTYTIME! said:


> The "SOMETHING" you feel in you anus, maybe a fistula.  All the reason to get checked.  I was saying the same things you are.   After getting checked,  im getting set up for surgery.  That "SOMETHING" in my bum is a fistula that has to be operated on.


its just hemhroids or even parasites. It feels like its moving inside my anus. 

how long did your symptoms last before diagnosis?


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## POTTYTIME!

Im a typical male so I just told myself it was hemorrhoids.  After 2 years of blood in stool,  blood in undies, feeling Like I poohing razors,  or itching like something was wrong with me, I finally went to the doctor.  

The final straw was when I was offshore, "my job",  I had an accident in my pants.  When I went to check, was nothing but bloody mucus.  When I had my colonoscopy,  I told my GI I felt something in there.  He told me he seen nothing.  This has went on for a few months.  Still having trouble, I got my wife to take a pic.  I showed he last week.  He checked and seen the fistula. There is also another one he didn't see.


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## protitis

i also had many times when i passed nothing but blood stained mucus. But if it was IBD why hasnt it got worse?  how much blood was in your mucus?

but i never got blood in undies. you were getting diarrhea everyday too. I am not getting that.


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## POTTYTIME!

I myself fall into the sever category if Crohn's Disease.   That is why I have more symptoms that others.  My colonoscopy shows Crohn's.   My blood work shows crohn's.   Barium scan shown my terminal ileum inflamed.  All points to Crohn's Disease.   

The blood and mucus is different at different times.  Depends on stress, food I ate, etc.  Sometimes it was just blood or just mucus.  I also used to smoke, which is a no no.  Since I have got on meds.  Not alot has changed.  Still cramp, still have alot of pain,  still have to know where bathrooms are.  That is why the more aggressive treatment on myself.


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## protitis

did you get calprotein? what level is yours?


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## POTTYTIME!

Dont know what that is.


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## Clash

protitis, calprotectin is a useful tool before dx to determine if further testing may be warranted. It can also be useful for some after dx and treatment to see if the treatment is effective at controlling the inflammation. But a lot of those with IBD can use inflammatory blood markers such as CRP to keep tract of their inflammation so they don't necessarily have need of the fecal calprotectin test.

It's used for my son because his blood markers aren't good indicators of active disease since CRP stays in the normal range. So we use fecal calprotectin but the cost falls to us as insurance doesn't universally cover this yet since it hasn't yet been deemed a standard protocol test.


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## POTTYTIME!

Oh.  No I have not done that.  My blood markers are enough to show my issues.   I was DX with blood, colonoscopy,  barium scan.  All three showed Crohn's.   My GI is amazed cause I have ALL the problems with Crohn's,  not just a few.


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## protitis

im confused now. I thought blood test cant show it?


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## protitis

Clash said:


> So we use fecal calprotectin but the cost falls to us as insurance doesn't universally cover this yet since it hasn't yet been deemed a standard protocol test.


its not supposed to be expensive. I have seen some that look like pregnancy kits. How much do you pay for it?

can these little kits be bought? I would like to do the test myself


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## POTTYTIME!

Yes they use blood test for crohn's.   Or more for markers for infection.


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## Clash

If you have inflammation in your GI tract it can show up in in CRP. That indicates there is inflammation in your body and is the standard goto tool among other blood tests in the CBC panel that docs use to determine if your GI issues could be due to inflammation.

Fecal calprotectin is relatively new to the scene and until it becomes a standard test for GI issues not all insurance companies will pay for it. 

We pay 230.00 every 3 months for the fecal calprotectin test.


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## protitis

Clash said:


> If you have inflammation in your GI tract it can show up in in CRP. That indicates there is inflammation in your body and is the standard goto tool among other blood tests in the CBC panel that docs use to determine if your GI issues could be due to inflammation.
> 
> Fecal calprotectin is relatively new to the scene and until it becomes a standard test for GI issues not all insurance companies will pay for it.
> 
> We pay 230.00 every 3 months for the fecal calprotectin test.


is that 230 dollars for one test?


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## protitis

how much will CRP be raised typically? will it come up even in proctitis?


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## POTTYTIME!

I dont know what it all means but one of my markers (IGG).  If count is more than 30 its positive.   Mine is 50.0
Another marker (IGA) 25 count is positive.   Mine is 116.1

Hope that helps


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## Clash

Yes, one test was 230.oo for us. If we go through a different lab it is 140.00 per test but that lab isn't convenient.

There is no certain amount that CRP being raised correlates with Crohn's disease or Ulcerative colitis. The level of inflammation can be a determining factor but not always since in some cases like my son's case normal CRP does not equate with no inflammation.

You could write down all the questions and concerns and go over them with your GP or GI.


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## Clash

What POTTYTIME is referring to is the Prometheous labs. There have been some studies I dicating that positive labs in these tests can indicate IBD but it isn't infallible and not used for dx alone as the percentage rates of accuracy aren't high. It is another good tool to determine if you should ha e further tests to determine if you have IBD.


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## protitis

Clash said:


> Yes, one test was 230.oo for us. If we go through a different lab it is 140.00 per test but that lab isn't convenient.
> 
> There is no certain amount that CRP being raised correlates with Crohn's disease or Ulcerative colitis. The level of inflammation can be a determining factor but not always since in some cases like my son's case normal CRP does not equate with no inflammation.
> 
> You could write down all the questions and concerns and go over them with your GP or GI.


but what range of levels of CRP is normal? was yours in the higher range of normal or lower? what was the value in mg?


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## protitis

230 is alot of money. Can you buy kits online and do it yourself?


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## Clash

CRP

C-reactive protein (CRP) 
Normal:	
Less than 1.0 milligram per deciliter (mg/dL) or less than 10 milligrams per liter (mg/L)


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## Clash

As you can see a higher lower range of normal would not be much. Someone with IBD will normally have higher than normal numbers but CRP detects inflammation anywhere in your body so a high CRP doesn't indicate IBD alone. It can indicate lupus, bone infection, other infection, arthritis etc...any type of inflammation in your body.

But if you are having GI issues and high above normal CRP then a GI may request further testing.


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## protitis

Clash said:


> CRP
> 
> C-reactive protein (CRP)
> Normal:
> Less than 1.0 milligram per deciliter (mg/dL) or less than 10 milligrams per liter (mg/L)


mine shows <1mg/L on all three bloods


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## my little penguin

Crp and sed rare etc can be completely normal and crohns can still be present
Each person is different and some just don't show inflammation in their blood work .
Promethius labs test is not recommended to be used to determine whether someone has Ibd or not . Typically it is recommended only to be used to determine whether the person with Ibd is more likely to have ulcerative colitis or crohns when the biopsy samples are showing indeterminate Ibd or surgery is needed for ulcerative colitis .


Good luck at the docs


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## protitis

By the same token, you fail to mention that there are false positives too. You can have high CRP, a positive biopsy and signs on the scope but it could all be wrong and you may not have IBD it may in fact be IBS. You may then be put on medication and sent away and all along you never had it. 

And if you think that is unlikely, then so is IBD. IBS and hemmrhoids are much more common.


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## POTTYTIME!

Never heard of all test showing positive,  and you body really being negative.  That would be a first. I have heard of being misdiagnosed the other way.  Having IBD but was told you h ad IBS.


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## protitis

i dont see how you can have no signs or symptoms or test results which indicate IBD yet you have it. Calprotein and crp together are sensitive tests.

The reason you havent heard of it happening is because you are on a forum where people have already been diagnosed positively. Youre not gonna find any people with false positives on here because they would not bother to be on here.


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## Clash

Sorry, protitis if you have granulomas in your biopsy your not going to be dx'ed with IBS. 

Also, if your CRP result is below 1 then you don't have a high result. 

Lastly, this is all mainly rhetoric at this point. No one is saying you have IBD, you asked questions and members gave their experiences. You can choose to go to the GI or not. Since this forum is for those who have IBD then any time someone has GI issues and is concerned enough to seek out a forum then the member response is seek medical care.


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## POTTYTIME!

That was one of my questions to my GI.  I was told, you test positive,  you are positive.   Let me re-state, I had 3 test, and all 3 was positive.   Im not saying if u have one of ever how many test that there could not be a faults positive.   My simple way of thinking, what I read, and common sense would suggest if you have more than one test showing you as having IBD,  then you probably have IBD!


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## POTTYTIME!

I can only give you my experience.   Only thing I can tell you is please get checked.  No one is trying to scare anyone here.  Yes I maybe bias leaning to Crohn's,  for one I have Crohn's Disease.   For two the is a crohn's disease forum so you will get more bias for crohn's.   

Advice is free, take it or leave it, but dont get upset when you ask and someone may not tell you what you want to hear.


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## protitis

Clash said:


> Also, if your CRP result is below 1 then you don't have a high result.


do you not think that a person with some form of IBD would at least have a CRP measuring at the higher end of the 'normal' result? 

Less than 1 means it was so small it was not measurable. This is true for all normal healthy people.

Sorry but if you dont think that gives some reassurance that you dont have serious IBD, then your opinion is highly pessimistic. 

Im not saying its conclusive but it IS even less likely to be IBD if one test is showing no sign of inflammation. IBD is still uncommon compared with IBS. Can you state what the figures are that are affected by each?
I have read that hemmrhoids are even more common. More than 50% have it at some point.


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## POTTYTIME!

Protitus:

I have a suggestion.   If you are convinced you have just hemorrhoids,  go to walgreens and pick up some "Recticare"  its about $30.00 a tube.  It is the highest amount of lidocaine you can buy OTC.  Go home and use it.  FROM EXPERIENCE,  if within 5 min. Your booty feels like you have a flame thrower in it, im about willing to bet its not hemorrhoids.  I have had hemorrhoids before and used this product with success.   When it wasn't hemorrhoids,  I knew real quick, fast, and in a hurry.


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## 2thFairy

protitis said:


> do you not think that a person with some form of IBD would at least have a CRP measuring at the higher end of the 'normal' result?
> 
> Less than 1 means it was so small it was not measurable. This is true for all normal healthy people.
> 
> Sorry but if you dont think that gives some reassurance that you dont have serious IBD, then your opinion is highly pessimistic.
> 
> Im not saying its conclusive but it IS even less likely to be IBD if one test is showing no sign of inflammation. IBD is still uncommon compared with IBS. Can you state what the figures are that are affected by each?
> I have read that hemmrhoids are even more common. More than 50% have it at some point.



Hemorrhoids are more common because everyone poops.  Paper cuts are common because everyone has hands and come into contact with paper on a regular basis.  You were banned for three days for arguing and now that you are back you are still arguing.

YOU came to a Crohn's/colitis forum looking for information.  You don't like the information you are getting, so maybe it is time for you to move on.  Everyone here has urged you to go to a doctor of some sort and ask A DOCTOR these same questions.  All we can do is give you our stories and experiences.  Only A DOCTOR can examine you and tell you what is going on and how to treat or not treat your symptoms.  You can choose to ignore all of this, but please stop asking for advice only to then turn round and argue for what you want to hear.


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## Clash

Yes, people can have a normal CRP and still have IBD. That wasn't what your post was about. You stated that someone could have all positive results for IBD and still just have IBS. I was pointing out that that scenario doesn't apply to you since you have normal CRP.

The majority of IBD patients will have it show in their blood work. Their CRP will be high such as 17, 36, 21. But how can I be pessimistic if I've already stated since my son's inflammation never shows up in blood work,  his CRP is always normal.

I feel I have addressed your questions, as have others. We are not doctors and can only give our experiences and k owledge from dealing with IBD. I feel you should approach a medical professional as it is apparent you have questions that need to be answered and explained.


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## protitis

Clash said:


> The majority of IBD patients will have it show in their blood work. Their CRP will be high such as 17, 36, 21. But how can I be pessimistic if I've already stated since my son's inflammation never shows up in blood work,  his CRP is always normal.


and i did ask you how normal? what was the value? there is no such thing as a normal value it is always a range. So even if its normal, you can be high up or low down within that range. 

Of course I am seeking medical care but what people dont seem to realise is that just to be seen can take months over here in the UK. 
So in the meantime all you can do is base things on reasoned judgements.

Nobody has perfect bowels. If they found a tiny patch of inflammation, does that automatically mean you have IBD? 

We cant always even trust the doctors. So simply saying go to the doctors is not the best advice actually.We have to do our own research and question things otherwise you will end up with a misdiagnosis.


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## POTTYTIME!

But to set and argue with people that are trying to help, is not constructive.


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## protitis

2thFairy said:


> You can choose to ignore all of this, but please stop asking for advice only to then turn round and argue for what you want to hear.


Often it seems to me that people are arguing for what i dont want to hear which would be a perverse thing to do.

Look the fact is, my appointment is at least several weeks away. There is nothing I can do to speed it up. 

There is no harm in having a reasoned discussion. This is a forum. If I dont agree I will state why I dont agree. If you think that is unacceptable, then this is not a discussion forum.


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## scottsma

Can I just commend my fellow crohnies for their superb patience in TRYING to give advice and support to "protitis".Please don't assume that all of us in the U.K. are soooo annoying.


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## Clash

But you answered your own question. The NRR(normal reference range) is just that a range. On any given day a healthy person's CRP may move some with in that range. So me telling you that my son's CRP is low end normal when scopes show raging inflammation and high end when imaging shows simmering gives you no credible info to base anything off of.

If you query the forum the majority of members, when in a flare, will have numbers a fair amount outside of the NRR of CRP. Also, the NRR varies from lab to lab and country to country.

Research is great, it helps you be a better health advocate for yourself. But you can't research yourself into a diagnosis with these questions. With every lab result the variation with each person is very wide. So,  we could offer our experiences, suggest certain tests like CRP, fecal calprotectin, colonoscopy or imaging but we cannot tell you individual lab values(especially that are within normal range) and you come to any valid medical conclusion when compared to yours.


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## POTTYTIME!

Discussion is discussion.   Argument is argument.


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## 2thFairy

protitis said:


> We cant always even trust the doctors. So simply saying go to the doctors is not the best advice actually.We have to do our own research and question things otherwise you will end up with a misdiagnosis.



Do your own research, yes.  That is mega important.  However, what you are doing is arguing with people who are trying to help you know what to research.  Take what you see here and research it.  Make a list of what to ask when you see your doctor.  

Have you checked out the Undiagnosed subforum here?  Maybe it is a better place for you to see what others are doing while waiting a diagnosis.  http://www.crohnsforum.com/forumdisplay.php?f=75


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## 2thFairy

scottsma said:


> Can I just commend my fellow crohnies for their superb patience in TRYING to give advice and support to "protitis".Please don't assume that all of us in the U.K. are soooo annoying.


:kiss:  You always make me smile!


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## 2thFairy

protitis said:


> Often it seems to me that people are arguing for what i dont want to hear which would be a perverse thing to do.


Okay, then let's try this a different way.  What is it that you do want to hear?


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## UnXmas

protitis said:


> Of course I am seeking medical care but what people dont seem to realise is that just to be seen can take months over here in the UK.
> So in the meantime all you can do is base things on reasoned judgements.


If you're in the UK, like me, you are incredibly lucky because you will not have to pay anything for tests and appointments. I take it you're already on the waiting list to see a consultant gastroenterologist? The waiting lists can be a few months if your condition isn't urgent, but you don't need to wait months for everything. You can get an appointment with your GP, possibly tomorrow, almost certainly within the next couple of weeks. A GP can examine you and determine if you have haemorrhoids. They can arrange blood tests - not highly specialised ones, but they can check for things like anaemia and other deficiencies, and for signs of inflammation or infection. They can arrange stool tests to see if there is blood in your stool. This won't diagnose IBD, but the results will suggest whether IBD is likely. 

Your GP will also be able to answer some of your questions, although you must keep in mind that the answers may still not be what you want to hear.


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## UnXmas

Also regarding the fecal calprotectin test: my gastroenterologists have had me do this test a couple of times, however, I've read on this forum that some people in the UK have asked for it but their doctors weren't able or didn't want to do it. So don't count on that test being available. You shouldn't need it to diagnose or rule out IBD though.


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## protitis

well unfortunately you are wrong mate. Half of what you say is simply not available to me and theres nothing i can do about it.

Once you get one answer from the gp, that is the final answer. They will not reassess you or reexamine you.

They are working to a tight budget which has already been exceeded in its capacity and so I dont agree that I am lucKy to be on the NHS.

If you are rich, which Im not, then its a different matter. 

They could not even offer me a simple caprotein test. I have to wait months to see the specialist and IF Im lucky they will agree. 

No stool test for blood either.


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## protitis

UnXmas said:


> Also regarding the fecal calprotectin test: my gastroenterologists have had me do this test a couple of times,


what did the result come back as?


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## protitis

UnXmas said:


> some people in the UK have asked for it but their doctors weren't able or didn't want to do it.


if they were not able to, then it shows how terrible the system is. It should be easily and quickly available. How hard is that? Cost is no excuse because the test is low cost plus it saves the NHS money by avoiding unnecessary colonoscopies.

If they _didnt want _to, then that proves my point about how unhelpful and useless they are.


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## 24601

I know that I'm incredibly lucky to live in the UK and have the NHS.

People struggle to see a GI and get a diagnosis in other countries too. We regularly read posts from people in the US on this forum who are waiting months for an appointment and they have a very different healthcare system.

Would you like to tell us a little about your visit to your GP, protitis?

Did they examine you?

What did your GP say?

Did they order any tests? (Btw in the UK a GP cannot order a fecal calprotectin test, that will only be done by the lab if ordered by a specialist)

If your symptoms continue or change then a good GP will listen to that and reassess the situation, which may include another examination. There are doctors who fail in their responsibility to do that but that is a failure of the individual doctors and not the health care system.


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## UnXmas

protitis said:


> what did the result come back as?


I've no idea what the numbers were. The last one I had done when I was an in-patient in hospital, and all I know is that it was high, and that, combined with my upper endoscopy and small bowel MRI results, was used as the basis for deciding to start me on steroids.

I'm guessing this answer doesn't help you much. But unfortunately that's usually how it's going to be when you seek diagnostic information online. So you do just have to wait for your appointment. For what it's worth, the symptoms you described in your first post do sound like haemorrhoids. Haemorrhoids aren't the kind of medical condition that warrants an urgent appointment with a gastroenterologist. The reason you're waiting is because urgency is a big part of determining NHS waiting times.


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## protitis

trust me on this, they have failed me. If the system hasnt failed, why cant they set the system up so that the calprotein IS made available through the gp just like a blood test is?
Its not just about diagnosing IBD its also about ruling it out and avoiding torturing people with colonoscopies. But clearly that is not a priority and the system would rather spend thousands of pounds on colonoscopies instead, while they continue to complain about how the system is being stretched beyond its capacity and budget. It doesnt make sense, given that a significant minority of patients who go to the GI do in fact have IBS.


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## protitis

when i did go to my gp they kept going on about how they would need to do a colonoscopy to find out. This is simply not true information. The first step is a calprotein. It is a new test but it is a highly useful one in my opinion. 

They only felt my abdomen. I wasnt ready for a rectal exam at the time. They said they would refer me and I have heard nothing back. Like you say, it takes months.


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## POTTYTIME!

I dont know how it is in the UK, but here In the US, a colonoscopy is as easy as it gets.  I go in, get an IV line, roll me in the bed back to a room, tell me goodnight, when I come too, I have to pass gas for about 39 min, then I go home unless something is found where I may need to go the next day to get a scan or something done.  If thats torture,  then sign me up any day.  The torture is the preparation.


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## alice75

POTTYTIME! said:


> I dont know how it is in the UK, but here In the US, a colonoscopy is as easy as it gets.  I go in, get an IV line, roll me in the bed back to a room, tell me goodnight, when I come too, I have to pass gas for about 39 min, then I go home unless something is found where I may need to go the next day to get a scan or something done.  If thats torture,  then sign me up any day.  The torture is the preparation.


I must agree my colonoscopies and my unmedicated flexible sigmoidoscopies are nothing especially when compared to what this disease has thrown my way lately.


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## POTTYTIME!

Yes.  I have a reaction to the contrast fluid and barium drinks lately.   Im guessing some countries/doctors do not sedate people beforehand on a colonoscopy?


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## Clash

Protitis, a fecal calprotectin is not approved to diagnose CD. If you have a high result a colonoscopy would still need to be done to determine if you are dealing with cancer, IBD or other issues that can inflame the bowel. So it is not the fault of the health system but the limitation of the the test itself.


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## Jmrogers4

Even here in the US it can be difficult to get a fecal calprotectin.  A lot of insurance companies won't cover them or GI feels they are not a good indicator.
My son's GI doesn't use them often but for us we have found them a good indicator for inflammation and then it was only used as a we need to investigate further to see where/what inflammation is from.
Every healthcare system seems to have its pros/cons.  Too bad we can't all take the best from each system and dump the rest


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## protitis

your GI doesnt use it probably because its not widely available not because its a bad test to use.

I still think they should make it available to gps. You wouldnt imagine having to struggle to get blood tests done. It saves money and avoids unnecessary examinations.


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## UnXmas

protitis said:


> when i did go to my gp they kept going on about how they would need to do a colonoscopy to find out. This is simply not true information. The first step is a calprotein. It is a new test but it is a highly useful one in my opinion.
> 
> They only felt my abdomen. I wasnt ready for a rectal exam at the time. They said they would refer me and I have heard nothing back. Like you say, it takes months.


Make another GP appointment and say you're ready for a rectal exam.


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## protitis

UnXmas said:


> Make another GP appointment and say you're ready for a rectal exam.


if they refuse, then what?


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## UnXmas

The gastroenterologist won't diagnose IBD with a faecal calprotectin test. They will most likely start by ruling out more minor conditions - like haemorrhoids - if you haven't already had them ruled out. If the gastroenterologist does suspect IBD, they will almost certainly want to do scopes, maybe some imaging tests as well.

But they will also consider other possibilities - there's much more that can go wrong with a person's digestive system than IBD, IBS and haemorrhoids.


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## UnXmas

protitis said:


> if they refuse, then what?


They won't refuse.


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## protitis

Clash said:


> On any given day a healthy person's CRP may move some with in that range. So me telling you that my son's CRP is low end normal when scopes show raging inflammation and high end when imaging shows simmering gives you no credible info to base anything off of.


do you have any proof that a healthy persons crp can move in that range? 
CRP is supposed to measure inflammation. If you have inflammation and very low CRP, how do you explain that? because i cant see how that can happen.


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## UnXmas

Jmrogers4 said:


> Every healthcare system seems to have its pros/cons.  Too bad we can't all take the best from each system and dump the rest


That's probably the most sensible idea to have come out of this thread.


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## protitis

is the rectal exam painful? I was worried about that too because when I tried to do the exam myself, I was getting pain when I put my finger in. If my anus is small, they might even cause damage during the exam.


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## POTTYTIME!

Protitus:

You have got to stop worrying about this and that.  When you have these problems, you all but loose all dignity.   Also you will be poked,  prodded,  felt on, and looked at in places that your family dont even look.  My last anal exam was the doctor laying me on my side, spread my booty and looked.  Anything else, I have been asleep.  They are not going to tie you down and beat you.  You are making worse on yourself than it will be.


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## 2thFairy

protitis said:


> is the rectal exam painful? I was worried about that too because when I tried to do the exam myself, I was getting pain when I put my finger in. If my anus is small, they might even cause damage during the exam.


It can be painful if you have hemorrhoids or other rectal disease, not gonna lie, but if no disease, usually they are more uncomfortable than painful.  The chance of a rectal exam causing damage is very slim.  Think of the biggest poo you have ever had.  The rectum stretches quite a bit.  You have a greater chance of having rectal damage through anal sex, and there are probably more people having anal sex than having rectal exams.

And please don't ask me to provide the numbers on that....


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## 2thFairy

Have you looked to see if you have external hemorrhoids?  You can do this by squatting over a mirror.


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## 24601

A faecal calprotectin test is a useful tool but alone it's not enough to diagnose or rule out IBD as 1) not every person with IBD will have an elevated faecal calprotectin level and 2) people with other conditions can have an elevated calprotectin level.

It's a relatively new test though and as more research is done we may come to understand better how to use the test, how to interpret the results and/or to understand it's limitations so the way in which it is used may evolve. Or it may no longer be used at all because there may be a more useful test that will replace it.

You can read the NICE 'Protocol for the Assessment of Faecal Calprotectin' here which goes into some of the considerations in deciding whether it should be used by GPs.

Everyone understands the frustration of waiting for tests and the desire for the whole process to be easier and faster.

It does sound like you are doing just what everyone here would advise - namely seeking medical advice. You've seen your GP and your GP has referred you to a specialist.

It's frustrating to wait but there is only so much that you (or us on the forum or even your GP) can know from symptoms alone and these other tests are needed to get a diagnosis.

In the meantime, I think you should try not to worry about the possible diagnosis. There is a very good chance that you only have hemorrhoids and perhaps IBS, as you said.

However, having said that, I do not think that it would be responsible of me to say that you shouldn't bother getting it checked out further, because it might be something else. You have the right to do whatever you want with your health though but I think you absolutely should go to the consultant's appointment that your GP has referred you for.

And I think it would be sensible to allow them to do a test like a sigmoidoscopy or colonoscopy. It's understandable to feel nervous or embarrassed about a test like that but remember that it is not such a weird and uncomfortable thing to the doctors - they do these tests all day and every day for patients! But you can always tell them you feel nervous or uncomfortable about it. Tell them if you would like sedation for a sigmoidoscopy or perhaps even to be completely out for a colonoscopy.

As to a rectal exam (more info on this NHS rectal exam page here), it probably won't be painful as it isn't for most people but you can ask them to apply a local anaesthetic to numb the area (read this NHS 'how a rectal exam is performed' page here). The doctor will only insert a gloved finger and have a feel for internal hemorrhoids or any other masses. Remember it is one finger and the muscles are designed to be able to relax and allow the passage of things of bigger diameter out through your anus. Again explain that you are anxious about the exam. They'll possibly suggest you take take some deep breaths as the calmer and more relaxed you feel the less uncomfortable it will be.

_________________________
I have no more spoons for this


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## protitis

2thFairy said:


> It can be painful if you have hemorrhoids or other rectal disease, not gonna lie, but if no disease, usually they are more uncomfortable than painful.  The chance of a rectal exam causing damage is very slim.  Think of the biggest poo you have ever had.  The rectum stretches quite a bit.  You have a greater chance of having rectal damage through anal sex, and there are probably more people having anal sex than having rectal exams.
> 
> And please don't ask me to provide the numbers on that....


I suspect I do have hemmrhoids. Whatever it is, it is painful when i try to insert my finger. Cant i do the rectal exam myself? what would I be feeling for if i had hemmrhoids?


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## protitis

2thFairy said:


> Have you looked to see if you have external hemorrhoids?  You can do this by squatting over a mirror.


i did. All I saw was a but of white skin and also red. I dont know what normal is supposed to look like?


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## protitis

There are a few unconventional options that people have not spoken about. For example, what would happen if i just got hold of some foam and started using it, on the assumption that its protitis? if it start working, i would probably know that its IBD. If it wasnt protitis would it harm me? 

secondly, there is the watch and wait approach. If its IBD then obviously at some point, it will become apparent even if you are asymptomatic now. 

some people have said it will spread if you leave it, yet others have said they went undiagnosed for many years. I dont see how both can be true? 

can it even go into remission if you left it?


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## valleysangel92

Hello there,  

I'm sorry to hear of all your troubles. 

I've read through the thread and I can tell that you've obviously got some very big concerns. 

Firstly, id like to say that the doctors are there to help you,  but they can't do that if you aren't willing to accept testing etc. Although some of the tests are unpleasant, they are more than worth it to get answers. 

What you suggest about just getting some foam isn't really practical or safe. If you aren't properly diagnosed then it's unlikely you will be prescribed any, and even if you were, there's no garuntee it will work. If it does work, that doesn't mean it's definitely IBD


Most people who have been diagnosed for a long time have actually ended up with the disease spreading or becoming out of control. Personally for example I started getting symptoms at 15, but wasn't diagnosed until I was 19. By this point medications weren't enough and I needed surgery to remove severely damaged bowel. I was dangerously underweight and very ill, all because I wasn't diagnosed sooner. Unfortunately it is possible to be undiagnosed for a long time and in a lot of cases it leads to complications. 

The best option is to try and see someone. If you tell them about your concerns then they can help you to find a way forward that you feel comfortable with. If you are concerned about the scope then it may be possible to have it under a general anaesthetic, in which case it will be painless.

As for fecal cal. They don't offer this at the GP because only certain labs have the capacity to run the test, so they have to be ordered in a very specific way. 

I know things seem very scary and you have a lot of questions, but there is only so much we can do for you. Please remember that the best way to take care of your health is to see a doctor. They will be fully trained and will know how to examine you without causing damage (something you are risking when you try to examine yourself)


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