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[Newtothis]

Hi everyone!
I am new to this and I am anxious to know what all crohns is. I had blood work come back that my sacch. ab cerevisiae Igg was high. My Dr. wrote me a letter asking me to schedule a scope. He said this was a single marker for Crohns. Does this mean I have Crohns? I am confused because nothing else was high. I have all kinds of symptoms but I like proof. I know I am getting a scope and I will find out soon enough but as you already know this is hard enough to go through with all the waiting. I want to be ready.

 

[LivinglifewithCrohn's]

Hi,

I am happy to share my experience with you. My diagnosis was as a result of physical symptoms I was experiencing, excruciating abdominal (intestinal) pain, that led me to the ED. I was subsequently admitted to the hospital. It was through a combo of testing that my diagnosis of Crohns' was determined. The conclusive testing was the colonoscopy.

I am not familiar with the blood work test your physician cited as being a marker for Crohn's. I have read about the identification of genetic markers for Crohn's. I suppose I have had this marker since birth (have not had my DNA analyzed to confirm). I lived with dormant Crohn's until I was in my early 30s, when I began experiencing the physical symptoms. Are you experiencing any physical symptoms?

What I would say to you is that if you are not in pain that is a good thing! You may have the genetic marker for Crohn's but it may be dormant for years. And I would bet that there are those who have the marker but who never get active Crohn's. There is literature that suggests a trigger, environmental, which kick starts Crohn's. There is a lot of info you can find on the CCFA site. I know a colonoscopy is a scary thought but the reality for me has been that the prep is worse than the scope.

I hope this info has helped. Best of luck to you. Oh, one last thought, are you being referred to a GI for the colonoscopy? I would highly recommend a GI if a Crohn's diagnosis is in question versus a PCP or general practitioner performing the colonoscopy. Just my personal opinion.

 

[David]

Hi there and welcome. While that can be a market for Crohn's, it is not a definitive diagnosis. If you're experiencing other classic symptoms of Crohn's Disease, it's another piece of the puzzle. I'm glad you're scheduled for a colonoscopy, that's a good step.

Would you care to share what your specific symptoms are?

We're here for you

 

[Angrybird]

Hello and welcome to the forum. I was also wondering what symptoms you have been experiencing that lead you doc to start doing the testing? A colonoscopy whilst not pleasant is a good way to see what is happening inside, usually biopsies get taken which can also help lead to a definitive diagnosis.

AB
xx

 

[Gculk]

That's an antibody they can use to point towards IBD. It's not perfect, like all tests, gives a few false positives, and also shows in Ulcerative Colitis and Intestinal Tuberculosis.

It's good to know you've started down the path to getting answers, it's certainly frustrating going along undiagnosed, like us people down to the undiagnosed club. Hopefully you've got a good doctor/gi who'll make your care easy.

While that can be a market for Crohn's,

Heh, even if there is a market for it, I don't think we'll be able to find anyone who'd be willing to take it off our hands.

Wishful thinking. :ytongue:

Nathan

 

[Newtothis]

Hi,

I am happy to share my experience with you. My diagnosis was as a result of physical symptoms I was experiencing, excruciating abdominal (intestinal) pain, that led me to the ED. I was subsequently admitted to the hospital. It was through a combo of testing that my diagnosis of Crohns' was determined. The conclusive testing was the colonoscopy.

I am not familiar with the blood work test your physician cited as being a marker for Crohn's. I have read about the identification of genetic markers for Crohn's. I suppose I have had this marker since birth (have not had my DNA analyzed to confirm). I lived with dormant Crohn's until I was in my early 30s, when I began experiencing the physical symptoms. Are you experiencing any physical symptoms?

What I would say to you is that if you are not in pain that is a good thing! You may have the genetic marker for Crohn's but it may be dormant for years. And I would bet that there are those who have the marker but who never get active Crohn's. There is literature that suggests a trigger, environmental, which kick starts Crohn's. There is a lot of info you can find on the CCFA site. I know a colonoscopy is a scary thought but the reality for me has been that the prep is worse than the scope.

I hope this info has helped. Best of luck to you. Oh, one last thought, are you being referred to a GI for the colonoscopy? I would highly recommend a GI if a Crohn's diagnosis is in question versus a PCP or general practitioner performing the colonoscopy. Just my personal opinion.

Hi again,
Thanks for your reply. I am seeing a GI. I figured there was no need to waste time since I AM having symptoms. I am going to have the scope done on Wed. next WED...I hate scopes and prepping for them. I had one years ago and a Dr. told me I had UC but he did not help me further and I didnt have the same symptoms as now there are more symptoms this time. I lost my insurrence and now I have it back so I am trying to get help. I had the last and only scope like 12 years or more ago.

 

[Newtothis]

Hi there and welcome. While that can be a market for Crohn's, it is not a definitive diagnosis. If you're experiencing other classic symptoms of Crohn's Disease, it's another piece of the puzzle. I'm glad you're scheduled for a colonoscopy, that's a good step.

Would you care to share what your specific symptoms are?

We're here for you

Hi, well I hate telling my symptoms but...........I have tons of mucus, stomach pain and cramps every now and then I have darker tinged blood in my mucus. It seems like my stool bleeds yellow. I don't eat anything yellow that I know of. I am fatigued all the time it seems like. I am also always bloated yes gassy. I am mostly constipated which it changes every now and then I have diareah or just can't finish. I just want help I want medicine or something. I have delt with this for YEARS. I thank god I don't know you all lol. This is embarrasing. I do thank all of you though.:soledance:

 

[Newtothis]

Hello and welcome to the forum. I was also wondering what symptoms you have been experiencing that lead you doc to start doing the testing? A colonoscopy whilst not pleasant is a good way to see what is happening inside, usually biopsies get taken which can also help lead to a definitive diagnosis.

AB
xx

Hi, and thank you for your reply.
My symptoms are all of bloated, gassy, pain, cramping, lots of mucus some with darker blood. I have gone through this for years. I am fatigued alot. I have alot of constipation and some direah. I always feel like I am not normal. I want a better life. My quality of life SUX. I mean SUX. No one understands in my family. I often want to cry because they expect so much out of me like why can't I work or do this or that but I often feel so Bad and I know they get tired of listening and I have had boyfriends say in the past I know I know you dont feel well.

 

[David]

Hi, well I hate telling my symptoms but...........I have tons of mucus, stomach pain and cramps every now and then I have darker tinged blood in my mucus. It seems like my stool bleeds yellow. I don't eat anything yellow that I know of. I am fatigued all the time it seems like. I am also always bloated yes gassy. I am mostly constipated which it changes every now and then I have diareah or just can't finish. I just want help I want medicine or something. I have delt with this for YEARS. I thank god I don't know you all lol. This is embarrasing. I do thank all of you though.

I can understand why you feel embarrassed by this but you're amongst people who understand all too well. You don't need to feel that way with us

Based upon what you're saying, IF the colonoscopy doesn't find anything, be sure to demand testing that will check for disease within your entire small intestine. Tests such as a capsule endoscopy or CTE come to mind first.

I would also request testing for vitamin deficiencies such as B12, folic acid, and vitamin D and anything else they're willing to check.

 

[Newtothis]

I also want to ask if anyone wears a Crohns Id bracelet because I do not know how serious this is and a friend of mine wanted to know. I wouldn't know why anyone would have to wear it so it got me thinking.

 

[Newtothis]

I can understand why you feel embarrassed by this but you're amongst people who understand all too well. You don't need to feel that way with us

Based upon what you're saying, IF the colonoscopy doesn't find anything, be sure to demand testing that will check for disease within your entire small bowel. Tests such as a capsule endoscopy or CTE come to mind first.

Does the colonoscopy just check one bowel? I was hoping to have it all taken care of the day I am there. I wanted the capsule endoscope but was afraid my insurence wouldnt pay for it or something. How often will I have to have a scope if they find something you think? Maybe once a year or?

 

[David]

A colonoscopy should be able to look into your entire large intestine and the very last part of your small intestine. There's a whole bunch of small intestine that isn't viewed and based upon your symptoms, I suspect there is something hiding in there.

If they find something, how often you're scoped will depend on your doctor's preference and how well they're able to control your disease.

 

[Newtothis]

A colonoscopy should be able to look into your entire large intestine and the very last part of your small intestine. There's a whole bunch of small intestine that isn't viewed and based upon your symptoms, I suspect there is something hiding in there.

If they find something, how often you're scoped will depend on your doctor's preference and how well they're able to control your disease.

Why wouldnt they just go ahead and do the small instestines too? I don't want to go through this all the time.

 

[David]

It's not something you do at the same time. Sometimes they'll do a colonoscopy and endoscopy at the same time, but the endoscopy doesn't see very far.

 

[Newtothis]

Why do they put Crohns and UC together? What is the difference? What does it mean if the doctor says a single marker for chrons showed up on blood work? Does this mean it's not that bad maybe?

 

[David]

Crohn's and Ulcerative Colitis are both types of Inflammatory Bowel Disease (IBD). Often the symptoms are similar and on occasion, a doctor can't tell which you have so they call it, "Indeterminate Colitis". But usually they can tell if it's one or the other.

Ulcerative Colitis is ONLY in the colon whereas Crohn's disease can be anywhere in the digestive tract (including just the colon as well which is when it can get a bit confusing). There's other differences, but I'll leave it at that for now.

If they say a single marker showed up, that means they ran various tests that sometimes point towards Crohn's and one came back positive. That doesn't mean for sure that you have it, but it's a clue. While some tests do correlate somewhat with future disease severity potential, you don't know for sure how bad it is at present unless you get in there and take a look.

 

[Newtothis]

Crohn's and Ulcerative Colitis are both types of Inflammatory Bowel Disease (IBD). Often the symptoms are similar and on occasion, a doctor can't tell which you have so they call it, "Indeterminate Colitis". But usually they can tell if it's one or the other.

Ulcerative Colitis is ONLY in the colon whereas Crohn's disease can be anywhere in the digestive tract (including just the colon as well which is when it can get a bitI confusing). There's other differences, but I'll leave it at that for now.

If they say a single marker showed up, that means they ran various tests that sometimes point towards Crohn's and one came back positive. That doesn't mean for sure that you have it, but it's a clue. While some tests do correlate somewhat with future disease severity potential, you don't know for sure how bad it is at present unless you get in there and take a look.

Thank you so much!!!! I am sure I will have more questions later.. I dread prepping for this test. I start prepping for it on Monday. I know something is wrong so I just pray they can help me with it. Please pray for me to get the help I need.

 

[David]

You will certainly be in my thoughts

*hugs*

 

[Angrybird]

Wishing you lots of luck with this hun :hug: The docs can usually tell you a little about what they have found straight away so keep us updated when you can on how you got on.

AB
xx

 

[Astrid]

Welcome to the forums, and good luck with your scope. I hope they'll find what's wrong with you.

 

[Newtothis]

Hi,

I have to start my low residue diet tom. I was wandering if you guys know if they can tell If I do have something going on if it is not active or am I just out of luck with finding out if its not?

I also was wandering and posted it before does any of you wear a bracelet for crohns or Uc or anything like that and should I ? I figured if I was on some medication I would want someone to know If I can't speak for myself. There has been a few time I was out at a store and felt like I was going to pass out from pain in my stomach.

Thanks to all of you for listening and helping.

 

[Newtothis]

Wishing you lots of luck with this hun :hug: The docs can usually tell you a little about what they have found straight away so keep us updated when you can on how you got on.

AB
xx

Awww thanks hun!!! Can they tell if nothing is active though? I worry about that. I mean my blood work states marker for Crohns but I am worried he wont see something and I am sick alot. If they take biopsies though they should be able to right?

 

[Newtothis]

Welcome to the forums, and good luck with your scope. I hope they'll find what's wrong with you.

Aww thanks.... Tell me about your story. How are you and all?

 

[Angrybird]

It is possible for the bowel to look 'calm' but then biospies that are taken which looks at things in more more detail can then confirm a diagnosis. Also a colonoscopy can only look go as far as the lower part of the small bowel, so even if things looked clear that doesn't mean there might not be a problem higher up.

 

[Newtothis]

Well I had my colonoscopy to find what? Nothing he said was wrong. I am so confused and I look like a fool. I really don't think nothing is wrong. ALSO note.....He is having me do STOOL samples, for what ???? If nothing is wrong? He also took two biopsies, again why if nothing is wrong and is he just making sure? I just want to hide now. What do you think?

 

[LivinglifewithCrohn's]

Did your GI doc review the pictures and provide you with a copy their summary report? My GI does this with me after every colonoscopy while I am in recovery, after the anesthesia begins to wear off ofcourse. I am not sure if this is a common practice amongst GI docs or not. If you did not get a report then if I were I would request one just so that you can read what he observed and comments he made. That he is asking for stool samples may be indicative that he wants to rule out the possibility of bad bacteria, parasites in your digestive track.

It has been my experience that any good physician is willing to take time with their patients and answer any questions they may have. But it is a two way street, the patient needs to ask the questions. If you are asking the questions and your physician is not willing to spend time with you explaining his/her thoughts about your condition then find another doctor. There are a lot of choices out there when it comes to physicians. Do not feel like a fool! And do not go into hiding! Finding the right diagnosis can sometimes take time. Always listen to your body and if you feel that something is wrong persist in finding a healthcare provider that will help you get to the bottom of it.

I learned early on that I have to be my own advocate when it comes to my health and I have to take an active role in managing my health and that includes managing my interactions with my healthcare providers. I am not a demanding patient but when I see my physicians I am fully prepared and I ask questions and also request reports. I also use an on-line program now available at most larger healthcare facilities (hospitals and their physician practices) in the US where you can contact your physician directly via email and you can also have direct access to test results that do not require a narrative, ex., lab work.

Hang in there. I know it is hard but again, sometimes the right diagnosis takes time. And you want to be diagnosed correctly.