In English

[butt-eze]

I got the results of my endo/colonoscopy.

I will only put what wasn't "normal".

Colon, right, biopsies: Mild chronic colitis with mild activity and a single focus of severe active cryptitis. No dysplasia or granulomas identified. HEABS stain highlights distorted architecture and decreased mucin production in the inflammed areas.

Colon, left, biopsies: Colonic mucosa with mild architectural distortion, and no active colitis, granulomas, or dysplasia. HEABS stain highlights intact collagen architecture and normal mucin production.

Stomach, biopsies: Antral and fundic type gastric mucosa with mild patchy chronic inflammation, focal active inflammation, and reactive epithelial changes. genta stain is negative for Helicobacter pylori organisms, with an appropriately positive control.

In English please...

 

[Isla]

Colon Right biopsies positive for active infmmation, both found in UC and CD. Chronic Colitis is usually another name for ulcertive colitis, which in your results is secondary and mild - this can be due to a chronic infection rather than UC.

Colon Left biopsies indicated no colitis or inflammation. Mild architectural distortion is scarring.

Stomach biopsies found inflammation, which is positive for Chrons (since UC only effects the large intestine.)

 

[butt-eze]

LOL Pen!!! I like the way you talk. Actually I got the nurse to fax it to me before the doctor put it into easier terms. He will tell me soon (today or tomorrow). I just didn't want to wait any longer. We are considering Humira.

Thanks Isla. That clears things up a lot! Why don't they just say it like that??? Does it make them feel more important using fancy words, lol!

 

[Isla]

Were they doing the test to diagnose or to monitor the disease?

 

[butt-eze]

Monitor only. I am diagnosed with CD. Originally it was UC but I have had inflammation in the ileum before too. We were checking things out to determine if I should wait to start Humira or just push ahead.
Also, my crohn's caused me to develop BOOP (broncial obliterans organizing pneumonia).
I appreciate that my doctor does frequent tests to keep me reigned in.

Amy

 

[Isla]

My *guess* is that they will probably put you on humira. I think medical speak is a lot like geek speak. If you expose yourself to enough of it you learn it very quickly!

Are you wanting to go on humira?

 

[butt-eze]

I have thought long and hard about it. I have failed all other meds including Remicade. I don't want to take it but am willing. I would rather avoid a terrible flare if I can. I have had severe problems before and am hoping this helps me avoid that.

Would you take it?

 

[Isla]

If it could be the difference between agony and discomfort - yes. You are asking the person that just 6-7 years ago was going to give bee therapy a try for my chronic pelvic pain. Which is grabbing bees with tweezers and stinging yourself multiple times!! If it meant getting out of a wheelchair and if it meant I could lessen the need for heavy narcotics then I was all for trying.

I am not a nun, so I am not really into the whole leading a life of suffering hehehe

 

[butt-eze]

Say no to bees! Yikes! I would do somethings but I'm not sure about that.

 

[Guest]

its true, you do pick up a lot of medical jargon after years of hospital admissions & appointments - but i wouldn't know where to start with that report lol.

i am always very direct in my questioning when i see a doctor or consultant, i would rather know the full story including the nasties, than come out wondering what something meant. i worry a lot - and unexplained terminology would just set my imagination on overdrive lol

 

[Kev]

I'll take a stab at translating it.. "QUOTE" You got some boo boos inside you there.. will that be cash, or on account? "UNQUOTE"

 

[butt-eze]

Now Kev, that is something I can really understand. Can I have a band-aid? Do you take monopoly money?

 

[Colt]

LOL Pen!!! I like the way you talk. Actually I got the nurse to fax it to me before the doctor put it into easier terms. He will tell me soon (today or tomorrow). I just didn't want to wait any longer. We are considering Humira.

Thanks Isla. That clears things up a lot! Why don't they just say it like that??? Does it make them feel more important using fancy words, lol!

Because they're being very, very specific. That's often important in medical tests.

 

[Isla]

I am just dying to find out if I was right! Because like Pen said about getting paid for it... it will be one more encouragement to join the medical field as my doctor mentions EVERY TIME I see him

 

[butt-eze]

I would like to know myself! I called yesterday and they still haven't called me back...should I call again and put myself on the annoying patient list???

 

[Isla]

I live on that list - they made special notations next to my name on that list as well

AHHH I feel so special

If you don't mind being labled annoying and pushy do it! Otherwise let them get back to you when they can.

 

[butt-eze]

Grrrr....the nurse just called. She said that I have mild inflammation and that the doctor isn't sure if we should start Humira yet. We will discuss it on Wednesday in his office.

So, are we going to wait until it gets worse? What the heck!!! I'm not saying I want to try a potentially harmful medication for no reason but I had already decided that I wanted to avoid a bad flare.

Suggestions for questions at my Wednesday visit:

 

[Isla]

Well what are you on now, and what are some more recent things you have tried?

 

[butt-eze]

I am currently on no medication for Crohn's. I take Nexium and zoloft.

The last drugs that I was on were Prednisone (discontinued 1/2008). Cytoxan (discontinued 8/2007). Prior to that I was on Remicade and failed terribly. I have failed and am intolerant to azathioprine, asacol, and pentasa.

The next option, as discussed with the doctor, is to try Humira or Methotrexate.

He's actually a fantastic doctor who really knows his stuff. He is the sought after doctor in the Northwest. I'm more frustrated that there are never clear cut answers with this freakin disease. It's always frustrating trying to get good answers through a nurse. So, I suppose it's a good idea to meet with the doctor to discuss this. I will be bringing my husband with me this time. I think he'll ask better questions than me.

I took it upon myself to get my CBC and SED rate today. I want to see if things have stayed the same, improved, or gotten worse. I shall share when I hear.

Amy

 

[Colt]

I am just dying to find out if I was right! Because like Pen said about getting paid for it... it will be one more encouragement to join the medical field as my doctor mentions EVERY TIME I see him

Take it from someone who is in the medical profession in the US: It is so depressing and disgusting the way things are done that it will crush your self-esteem and hope for humanity. Abuse and neglect are the standard. Only around 10% of the laws and procedures regarding medical care are followed. Oh, and the administrators are corrupt beyond belief. They do things like defraud the nonprofit system (the popular method is to hire yourself and pay out the total of the year's profit as your own bonus), they intentionally under staff and provide insufficient care even on a basic needs level, and they treat the employees like absolutely scum.

Employees are openly set up to take the fall for these things too. They'll put you in charge of so many people it's not physically possible to get to them all in time which forces everyone to do things like not wear gloves or wash hands (which is why hospitals and nursing homes have rampant spread of disease), not use safety devices like gait belts and mechanical lifts, forge books stating that medication was given when there was not enough time to give it, leave people sitting for hours in pools of their own urine because you're busy bouncing from one call light to the next, etc. Basically anything that can shave 30 seconds off of the time you spend in each room is done regardless of the consequences because if you don't make it to every room by a certain time you're fired.

Oh, and only in the medical profession will you hear such crazy things during your introduction as your employer does not honor FMLA and if you call in sick you will probably be fired.

 

[BWS1982]

I would take a guess Butteze that they may be reluctant to give Humira due to insurance purposes, as a good case is needed to get it to go through for approval, a la Remicade. It's a top tier drug, and inflammation being currently "mild" may make them suspicious of your odds at getting it approved.

That's my collective analysis from all the utter BS I've seen in this insane "game".

 

[Isla]

I used to work at a nursing home and none of those things happened. Both my sister and mother worked at nursing homes for years and my sister is now an administrator at Children's Home and Aid, and those things never happened. It may have been your experience but saying it will crush my hope for humanity is being over dramatic.

I find it appalling you think being in the medical field is only for corrupt and abusive people, only out for themselves and money. I know so many wonderful people in the medical field from ALL aspects. From data entry people, to pharmacists, to nurses, and a few doctors. The main theme of why they went into the medical field - to make a difference in people's lives.

I think you have a chip on your shoulder and maybe you regret giving to something that only seemed to take away from you and others. I appreciate the sentiment of trying to warn me - but I feel sorry for how much disgust you have toward the medical profession as a whole. I hope one day your faith in others will be restored as I am amazed by people every single day!

Take it from someone who is in the medical profession in the US: It is so depressing and disgusting the way things are done that it will crush your self-esteem and hope for humanity. Abuse and neglect are the standard. Only around 10% of the laws and procedures regarding medical care are followed. Oh, and the administrators are corrupt beyond belief. They do things like defraud the nonprofit system (the popular method is to hire yourself and pay out the total of the year's profit as your own bonus), they intentionally under staff and provide insufficient care even on a basic needs level, and they treat the employees like absolutely scum.

Employees are openly set up to take the fall for these things too. They'll put you in charge of so many people it's not physically possible to get to them all in time which forces everyone to do things like not wear gloves or wash hands (which is why hospitals and nursing homes have rampant spread of disease), not use safety devices like gait belts and mechanical lifts, forge books stating that medication was given when there was not enough time to give it, leave people sitting for hours in pools of their own urine because you're busy bouncing from one call light to the next, etc. Basically anything that can shave 30 seconds off of the time you spend in each room is done regardless of the consequences because if you don't make it to every room by a certain time you're fired.

Oh, and only in the medical profession will you hear such crazy things during your introduction as your employer does not honor FMLA and if you call in sick you will probably be fired.

 

[butt-eze]

Benson that is a good thought. I truly can't wrap my head around any other reason but now that makes sense. I assume they will need to do a prior authorization.

I think Colt and Isla have had two very different experiences. I work for a wonderful medical clinic currently (reception only). However, I have experienced greed, under-staffing, and corruption in other places. I have just found that I need to seek out my own best situation. I am happy to be in competent hands and think that the best decisions are being made for me.

I'm still unsure what to think about this situation. My stomach does have inflammation and even with the Nexium I experience acid reflux. This makes me wonder if the crohn's is contributing to the discomfort. I am by no means having clear symptoms of a flare though.

Amy

 

[Isla]

Your tests showed ACTIVE inflammation plus evidence of past inflammation. A flare is active disease whether mild or severe. You have active disease in your colon and stomach.

But...

Doctors have to quantify the disease activity to judge whether you are in remission, have mild, moderate, or severe active disease, or whether you are getting better or worse with any changes in diet or medication. You help quantify this by your symptoms. You can help quantify it yourself by using a tool *some* doctors use called the CDAI. (Most doctors use their experience and knowledge in place of this formula.)

To learn about the Crohn's Disease Activity Index go here:
http://en.wikipedia.org/wiki/Crohn's_Disease_Activity_Index

Here is an online one you can use for yourself:
http://www.ibdjohn.com/cdai/