Share Facebook
Crohn's Disease Forum » General IBD Discussion » Colonoscopy results. The more help, the better!


 
04-20-2012, 10:06 AM   #1
KWalker
Moderator
 
KWalker's Avatar
Colonoscopy results. The more help, the better!

I just went and got my colonoscopy results so I could have my own understanding of what was found because as I said, my doctor never seems to have time to go through anything with me.

From what I can see, I don't think anything looks too bad but maybe you guys can help me.

GROSS DESCRIPTION:
-"The specimen consists of five pieces of yellow mucosa 0.1 to 0.3 cm in greatest dimension."

"MICROSCOPIC DESCRIPTION:
-"Sections show colonic mucosa with ulceration and granulation tissue. The architecture of the colonic mucosa is distorted. There is cryptitis and cryptic abscesses. Multiple lymphoid aggregates are seen and the muscularsis mucosae are infiltrated by mononuclear inflammatory cells. There is no granuloma or dysplasia. The morphology is compatible with active crohn's disease."

Then for the doctor's observation:
"The gentleman just recently had a perirectal abscess drainage. The incision site was still quite fresh. I therefore only advanced the colonoscope up to a distance of about 60cm, i.e. splenic flexure. I did not want to put anymore undue pressure by torquing the instrument and opening the incision near the rectum.

The lower rectum was actually quite normal, but as soon as you got up about 10cm, there were changes typical of crohn's disease. The mucosa is cobblestoned with numerous small discrete ulcerations and friability. Biopsies were taken in a random fashion."





What do you guys think of this? Any help would be greatly appreciated.

Thanks a lot guys!
__________________
Diagnosed:
Age 2 (1992)

Previous Meds:
Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
04-20-2012, 10:18 AM   #2
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
I think the report states quite clearly that you have inflammation and your crohns is active. Not a great report actually, and I'm sorry to see this.

When is the GI going to go over this with you? He'll have to. If you have an IBD nurse, she can go over the report with you as well, and follow up with what they would like to do.
__________________
Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
04-20-2012, 10:22 AM   #3
KWalker
Moderator
 
KWalker's Avatar
Yeah, I know my crohn's is active. He "went over this" with me during the less than minutes I was in his office before he sent me out the door so he could get on with his next patient before lunch. Literally all he said was I have active crohns and gave me a prescription for Imuran. I actually didn't even know what the prescription was for until the receptionist told me the instructions. I don't have an IBD nurse. I'm not sure if you read through another thread I made but my doctor is a really terrible doctor and I'm trying to look for a new one.
04-20-2012, 10:25 AM   #4
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Wow, what an ass. I have read it.

You really, really need another GI. And you need a GI with an IBD nurse, because they are a godsend if they are good.

Imuran can take months to work, as you know. I would've thought they needed to give you something to get the inflammation down now??
04-20-2012, 10:38 AM   #5
KWalker
Moderator
 
KWalker's Avatar
I have found a GI about 20km away from me which is actually a lot closer than I thought the next nearest one would be so I left his office a message and I'm waiting for a reply back. I'm not sure if I would need a referral or if they would just take me without one so I'm waiting to see how that works out.

My doctor's appointment was....last Friday I believe which is when he prescribed me the Imuran and I haven't even filled the prescription yet. I really don't like the side effects/risks of the Imuran, especially when (like everyone says) it's takes months to work. I could wait a few months (if it takes that long) to find the right doctor, and get on something like you said to attack the inflammation right away but with less risks and I would still be at the same point as I would taking the Imuran without any benefits in the first few months. For me personally, Imuran is a last resort. There's still some medicine I haven't been on and that's what I want to try first.

Does it make sense seeing my results and hearing I don't have symptoms? Now that I'm taking the psyllium I don't have any physical signs of crohn's. Even the D is gone with the psyllium now and yesterday I didn't even go to the bathroom! When I think of active crohns, I think of pain, running to the bathroom, no-little appetite, no energy, etc. I don't have any of that. It doesn't make sense.

I really wish my doctor would have actually taken time to talk to me. He was opening the door and pointing me to the front office before I could even ask him anything. It was one of those times where things happen so fast you don't even have time to think. I think that's part of the reason why I'm so reluctant to doing what he says is because he doesn't take the time to treat me like a person.
04-20-2012, 10:45 AM   #6
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
I was thinking entocort to get your inflammation down. Alot less side effects than pred.

The only problem with having active crohns and inflammation is this, scar tissue and blockages. You can be going along happily as can be, but the damage going on inside will get you down the road. Thats the scary bit. After being undiagnosed and on no meds to speak of for 15 years, my colon looks like a bomb hit it. And they cant fix it.

I would actually take your results to the GI you wish to see, and then leave with the nurse. I dont doubt they will get you in sooner.

And I know what its like to be treated like a number. Its not right, and no you dont have to take that!
04-20-2012, 02:44 PM   #7
KWalker
Moderator
 
KWalker's Avatar
I'm not too familiar but I will look up Entocort and mention it to my doctor next time I see him. I haven't received a call back from the other specialist yet so maybe I'll just have to call him back and try and speak with somebody.



Does anybody else have any knowledge in this as well?
04-20-2012, 03:18 PM   #8
Manzyb
Forum Monitor
 
Manzyb's Avatar
 
Join Date: Nov 2009
Location: San Diego, California

My Support Groups:
It seems to me that your results aren't good. If you have the active disease then you definitely need something to get things under control. I know that you said you feel fine and don't have any symptoms, but that doesn't always mean that things on the inside aren't going haywire. The psyllium will stop your diarrhea. It's a bulking agent, that's just what it does. I take it as well, but still have active disease.

I hope you find a better doctor who will take the time to explain things to you, and maybe offer you some better advice. It sucks, but I do think you will need some type of medicine to get things under control.
__________________
Diagnosed with CD in 1999 at 15.
http://www.facebook.com/profile.php?...14&ref=tn_tnmn


Sadie turns 2, 4/5/13!
04-20-2012, 05:47 PM   #9
Trysha
Senior Member
 
Trysha's Avatar
 
Join Date: Aug 2009

My Support Groups:
Hi K,
You need to be treated much better than this and really need a good Gastroenterologist.
I have sent you a private message which may be helpful to you.
Feel better soon
Trysha
04-20-2012, 06:15 PM   #10
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Maybe try taking the report to gp for explaination and discussion of use something for treatment while you get a new gi.
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

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

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-20-2012, 07:35 PM   #11
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
You need blood work done before starting Imuran and need to have liver functions followed while on it. You also need a TB test before starting it. DEFINITELY get a different doctor!!
__________________
Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
04-20-2012, 07:45 PM   #12
KWalker
Moderator
 
KWalker's Avatar
Yeah I got the blood test stuff for the Imuran, although my doctor says "blood work isn't required" before starting. So should I hold off on the Imuran? I'm not going to wake up dead right? lol
04-20-2012, 07:53 PM   #13
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
There is blood test that should done before starting, then blood tests every week for 4 weeks ,then every 3 months as long you are taking the medication.

This is the medication dusty kids take and my daughter.
04-20-2012, 07:57 PM   #14
KWalker
Moderator
 
KWalker's Avatar
Oh nice, my doctor didn't mention that. He said I'll take Imuran for a week, then I take a blood test after the week. If it checks out I'm good to go. What an idiot. I believe in dream catchers more than I believe in my doctor...and I don't believe in dream catchers.

Regardless, I won't be going on Imuran.
04-20-2012, 09:49 PM   #15
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Sarah gi didnot the test before either but did do the weekly blood tests.
04-22-2012, 06:57 AM   #16
KWalker
Moderator
 
KWalker's Avatar
224 views and only 14 replies? Ouch!



Judith, could you please look at this thread and see if you can understand any of what the doctor said and put it in simpler terms for me
04-22-2012, 09:35 AM   #17
mum16
 
Join Date: Apr 2012
Location: Abu Dhabi, United Arab Emirates

My Support Groups:
Hi K.
You definitely need a new doctor, and fast. I dont know how the health care system works in your part of the world, but there's got to be a way. Sometimes we just have to shout a bit louder and insist. I noticed you are not taken ANY medicine now, and that is NOT a solution. Worse case, go back to your old doctor and put your foot down and demand some answers, and his undivided attention.
Good luck
04-22-2012, 10:35 AM   #18
KWalker
Moderator
 
KWalker's Avatar
I understand that people think I should go back on medicine and I appreciate the concerns but I'm really looking for someone who can help me understand the results. I have my own reasons for staying off medicine as do we all have our own reasons for the things we do/dont do. I'm not the only person with active crohns not taking medicine and quite drankly I'm doing better without medicine than a lot of people are that are taking medicine. The only difference is I'm not pumping more chemicals into my body.

I have no problem going on medicine but I'll do so when I find a medicine, and doctor that I'm comfortable with. I do appreciate all the concerns though and I thank those of who have taken the time to reply. I'm just really looking for somebody to put these terms into ones I can understand.
04-22-2012, 03:13 PM   #19
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Hey K,

What the report is describing is active Crohn's which you already know. The doctor did not want progress past the the bend of descending colon and into the transverse colon because of the reasons he stated. It is then anyones guess as to what may be happening higher up. He is describing active Crohn's as well.

Dusty. xxx
__________________
Mum of 2 kids with Crohn's.
04-22-2012, 03:45 PM   #20
KWalker
Moderator
 
KWalker's Avatar
Yeah he told me he didn't want to go any further up just to be safe because of my abscess surgery and the severity of that. We weren't even going to do the scope but figured some is better than none. I was trying to google the terms like the cyptitis and some of the other ones and can't really figure out what they mean in terms I would understand and how bad those things are.
04-22-2012, 04:21 PM   #21
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
The terms they are using are features you expect to see in certain bowel conditions. The features you have is what differentiates you as having Crohn's and are the changes in the bowel that result from inflammation. Crypts are small cavities in the bowel wall that result from conditions like Crohn's and when active inflammation is present they become infected , hence cryptitis and abscesses. They tend to be a feature of large bowel disease and particularly disease lower in the large bowel.

The lymphoid aggregates are clusters of cells that would be present due to the damaged bowel, they would be attempting to regain a healthy balance. The mononuclear inflammatory cells are also there trying to repair damage.

So you have descriptions of both damage and what is seen trying to limit that damage. Perhaps overly so...over active immune system???

Granulomas are another response to damage and are said to be the gold standard in a definitive diagnosis of Crohn's but that is a furhpy because not everyone with Crohn's has granulomas. Matt certainly doesn't.

Dysplasia is a change in a cell making it abnormal and those cells in turn infiltrating an organ or tissue. It is generally used when describing a change in a structure that may indicate something like cancer.

That my two cents worth and it is likely only worth a quarter of that since I am no expert!

Dusty. xxx
04-22-2012, 04:57 PM   #22
KWalker
Moderator
 
KWalker's Avatar
Wow! Thanks DustyKat. My crohns is in the large bowel (just from previous knowledge). Did you say I have an over active immune system? What would that mean? If I'm thinking right that would be a good thing no? It sounds like it would be better than a weak immune system. I'm sure I'm wrong though.

With the other stuff like you said being present to try and repair the "damage" isn't that a good thing as well that my body's trying to fight back?

Lastly with the dysplasia, should I get tested for cancer? How would they do a test for that? Another scope? I know I'm at a greater risk because my dad died of cancer.

Thanks so much for that!
04-22-2012, 05:02 PM   #23
KWalker
Moderator
 
KWalker's Avatar
Reading over my notes, it says there is no granuloma or dysplasia. Phew, I almost had a mini heart attack!
04-22-2012, 07:35 PM   #24
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Yikes! Sorry, I thought you realised that there was no dysplasia.

The over active immune system is just me hypothesising. The main train of thought is that IBD is autoimmune and as such the immune system is overly active or stimulated. When they used the term "infiltrated" I was alluding to the fact that perhaps there is an over supply of white blood cells.

It is good to have a strong immune system that fights disease but unfortunately you can have too much of a good thing when your immune system is skewed like that in IBD. If your own body doesn't recognise that it is attacking itself then the war just keeps raging on, wreaking havoc on whatever it decides to target as the enemy.

Dusty. xxx
04-22-2012, 07:39 PM   #25
KWalker
Moderator
 
KWalker's Avatar
Ah, thank you! Have you ever considered becoming a doctor? You would be SO much better than any I've ever dealt with!
04-22-2012, 07:42 PM   #26
KWalker
Moderator
 
KWalker's Avatar
Ah, thank you! Have you ever considered becoming a doctor? You would be SO much better than any I've ever dealt with!

Okay lastly, pretend you have no idea about my medicine situation. Would these results be considered serious, mild, or fairly normal for the average crohns patient?
04-23-2012, 01:02 AM   #27
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Not having seen your bowel and assuming pathology hasn't rated what they consider your level of disease activity to be then it is hard to say.

Obviously you have active disease and for the doc to jump straight to Imuran means he either believes in hitting things a little harder straight up or he puts your level of activity at moderate to severe.

If you were on medication and they were presented with these results I believe they would be either tweaking your meds or changing them as they have clinical and objective markers that show they aren't working.

The thing is KW I just don't know that this is going to resolve without intervention and the longer the inflammation festers away the more damage that will be done.

Dusty. xxx
04-23-2012, 11:23 AM   #28
KWalker
Moderator
 
KWalker's Avatar
Could I find anywhere the pathology report that says how bad it is? The reason he is going straight to Imuran because although I haven't tried a few drugs yet he says I've tried all the ones worth trying so Imuran is next on the list. He wanted to put me on Imuran right from my first appointment with him before he saw a scope or the results from my previous doctor. When I questioned the Imuran he said it's standard practice for him because he finds that to be most effective...basically leading me to believe that he's doing this for his personal interests rather than treating each patient individually.

I know I've said this a few times, but I just cannot get over the fact I have absolutely 0 symptoms so I cannot see my crohns being "that bad" Sure it's active but like I've said there are people on medicine that don't even have close to the success as I have without them.. Just makes me wonder how bad it really is.
04-23-2012, 11:55 AM   #29
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
Dude... you have cryptitis with abscesses... it's that bad. You need meds.
04-23-2012, 12:37 PM   #30
KWalker
Moderator
 
KWalker's Avatar
I'm not looking for any rude responses. I'm not an idiot and thinking I'm too tough for medicine, I'm just trying to understand. This is a support group, for people to help others understand things.


Do you have any knowledge of the situation or do you see the word abscess and think the worst case? I didn't come here doubting the usage of medicine or for people to tell me I need it because in the end that's up to me (and only me) to decide but I was looking for people like DustyKat with a backround knowledge to give me understanding of the situation.
Reply

Crohn's Disease Forum » General IBD Discussion » Colonoscopy results. The more help, the better!
Thread Tools


All times are GMT -5. The time now is 02:59 AM.
Copyright 2006-2017 Crohnsforum.com