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Need some help with Interpretting my long awaited c scope reports

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Ulcerative Colitis
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Posted 3/26/2010 5:50 PM (GMT 0)
So I finally got the report from my last colonscopy which was from the flare I had two years ago that I am still trying to get under control.

This is what it says:

Mayo Grade 3 ulcerative colitis involving the recosigmoid with friabilitty, bleeding and ulcers of the mucosa.  There was Mayo grade 2 in the sigmoid witih edema, friability and destruction of vascular pattern. There was Mayo grade 1 in the transverse, and right colon all the way to the cecum with friability and bleeding of the mucosa and the Ileum itself was normal.

Final Impression: Mayo score: 3 rectosigmoid, 2 sigmoid and descending colon,  and grade 1 transverse and ascending colon. ie. universal colitis and severe flare.

And then the Pathologists Diagnosis says:

Random biopsies sigmoid colon. consistant with chronic active ulcerative colitis.

Active inflammation with ulceration is noted . No evidence of dysplasia.

So there is it.

At the time of this scope my symptoms were:

bright red bleeding

left sided cramping while having a bm

tenesmus

urges and signals  to go to the bathroom up to 50 times a day, most of the time only gas passed and mucus

skinny stools not much output

At this point I was put on 40mg prednisone for 3 weeks and then tapered very slowly ..took about 3 months.  STayed OK for about a month..then it all started again with the urges and blood and tenesmus. Humira for almost two years and with pred on and off as it was the only thing that I thought helped. Off humira as its not helping that much and want to try  safer meds.

 Currently: 8 Salofalk  a day and enemas nightly for just over two weeks now..1-3 bms a day, soft and skinny most of the time..sometimes firm, less urgent..

I never did have the results of that c scope until today so I really want to know what it all means and if Im in the right treatment and going in the right direction

 

Posted 3/26/2010 6:34 PM (GMT 0)
If I were to colour your colon, the whole thing would be red, darkest at the rectum and up to sigmoid with some black circles, then dark red into and above the sigmoid gradually fading to lighter at the transverse and ascending.

Yep, your whole colon is involved, good you have no backwash into the ileum.

Awesome no dysplasia.

The rectum and just into the sigmoid is worst, already causing individual ulcers, not only superficial ulcerations.

Sigmoid isn't as bad...(that's good)....but actively involved.

I would think that your treatment kept things from getting worse considering you were on the pred and Humira.

Since you're producing an actual stool....I would think that above the sigmoid is behaving itself. It might have slight inflammation, but since you are on the oral 5ASA, it seems things are being maintained and that's a good sign.

Regarding 1 - 3 stools a day, less urgency, seems the rectum and sigmoid are on its way to being healed.

What you need to do is have another c-scope done for a new baseline. I'd personally be excited to see how things are doing...yes, I'd watch the monitor!

Hope this helps.
q
Posted 3/26/2010 6:43 PM (GMT 0)
what are indiviudal ulcers vs superficial?
So really it just sounds that even when I felt that horrivle mostly only the rectum was inflammaed?

Do you think the enemas are the right thing based on all this ? The stools are still very thin and mushy at times..and then the tail end is firm???
they slide out in the morning but I think that might be the enema making it do that? what do you think?
Posted 3/26/2010 6:55 PM (GMT 0)
There are superficial ulcerations and individual ulcers. The individual ulcers go deeper into the mucosa, not just the submucosa. With the individual ulcers, there can be pus....

Your whole colon was inflamed.....just the worst at the rectum and just into the sigmoid.

Of course, you need the enemas....regardless since that's where it starts and will be continually inflamed until your flare is over.....heals downward. think of it like a tree works...spring (start of a flare), summer (flare), fall (starting to heal top downward), winter (remission).

I think the stool consistency has a lot to do with what you're wating. I wouldn't worry about that as much as I would focus on how your butt feels when it's going out and how your urges are feeling.

Yes, if they slide out easily, the enemas will probably be responsible for most of that. I also tend to get a bit of extra propulsion from the enemas as well.

I think you're doing great Krissy....but I would suspect you'll be a med lifer...if you can do the 5ASA meds, continual oral (dose may be adjusted depending on your scope) increased during a flare, decreased in remission...rectal meds increased at first symptoms, tapered to maintenance.

Think long-term. My comment would be that again....if you can avoid the big-guns, that would be best considering why you had to stop.

quincy
Posted 3/26/2010 7:01 PM (GMT 0)
Krissy - why did you have to stop Humira?
Posted 3/26/2010 7:07 PM (GMT 0)
I think I love you Q..:) again not creepy but you kwim ...

You explain things so well, eveyr thought of being a GI yourself? They make some good cash here $$$$$$$$$$

do you tihnk I should reintroduce the supps at any point..I like them better as they are easier..and when do you think I should start to taper these enemas..I Feel liek I have been the same for  a while now..except this new left sided crampiness

Today the whole left side is crampy..all the way into the sacrum joint in my back..I made an appt for a massage..I need it..ahhhhh

Anyway..so I really would like to drop to 6 salofalk and do something rectal a few times a week either the supps or enemas..do you tihnk im close to that?

if i stay like this how to do know if im better or worse? right now i dont fee a huge difference...

Thatfield- stopped because I was sick ALL the time, I mean all kinds of colds, infections flus the whole entire time..and then very large glands on my neck that suggested possible cancer and that was that..they were nothing in the end but forget that stuff..just forget it I said..no more.

Posted 3/26/2010 8:22 PM (GMT 0)
LOL Krissy....I appreciate your sentiments! besides, you keep me on my toes..
I'm sure my GI rolls his eyes after I leave with all my questions, but he explains things simply and quietly...the rest I learn from here and research.

UC's pattern seems pretty straight forward for those of us who actually heal from a flare. Those who don't react to the meds...different category, way out of my league of experience or knowledge base. I'm not there so I tend not to think I can control things...just maintain and do what works for as long as I can.

The past 21 years plus the years of sheer health bs was like yesterday. The panic ended with answers and the permission to relax since I did respond to the meds.
I don't care if I have to use them (of course, If I was on pred or other, my perspective would be to have my colon out) because I'm "functioning" well with little interference in my life. My life has already been adjusted through conditioning of existing...I won't go back to where I was. I don't know what will be in my future, I just hope I can get through the probable stuff of growing older.
Trying to get my tools all lined up and labeled for use when needed.

Regarding the supps....stay on the enemas nightly for at least 2 more weeks then taper the enemas to every second night using the supps then. Do that for maybe 2 weeks then do the enemas every third night with the supps on the two nights between. If you continue that way till you're on the supps nightly...then eventually taper those.

Remember...you want to get off the bcp. You want to get pregnant. You NEED to have experience with your UC symptoms and how to treat so that you'll know what to expect.

At the very least, you won't be flaring during your pregnancy. Plus, your pregnancy will also include looking after your toddler....not an easy feat for anyone I would think. let alone having UC.

food for thought.

q
Posted 3/26/2010 8:25 PM (GMT 0)
Wow! That's really detailed! My last scope results discussion went like this:

Doctor: look at the ulcer pictures!

Me: Ahhhh!!!

Him: I know, right?! Yikes, here's some prednisone and Imuran!

Me: yes, thank you, because darn!

/both nod and shake head at frightening photos.
Posted 3/26/2010 8:27 PM (GMT 0)
Jennifer...you need to lots of research so that you're armed with questions to ask.

That's why I LOVE to be awake (nicely stoned) during the c-scope.

q
Posted 3/26/2010 8:37 PM (GMT 0)
He did actually explain better than that, I was being silly. ;o)

He related all the photos to a chart in terms of location, severity, etc. :o)
Posted 3/29/2010 12:58 PM (GMT 0)
Q- I was just rereading the scope results and noticed something. How can there be bleeding in the rectum and tranverse but no bleeding in the sigmoid?
Posted 3/29/2010 5:19 PM (GMT 0)
friability means bleeds easily upon being touched....so, basically, it bleeds. It says rectosigmoid friability.
Posted 3/29/2010 5:43 PM (GMT 0)
my doc prob wont just give me another scope..he has a looooooong waiting list and he doesnt consider me to be in real trouble right now..
so do you think he can do something to look in there in his office?
Posted 3/30/2010 8:28 AM (GMT 0)
Yes, I asked my doc to take a look-see. He used a rigid scope and was respectful to not use too much air, thanfully. I think it only goes up 6 inches.

Regardless...things were quite sensitive and friable.

q
Posted 3/30/2010 1:06 PM (GMT 0)
So should I ask for the same thing?
I had the rigid scope done when I first appeared in his office with symptoms. I remember it was not comfy but I really neededed to know what was goin on in there..(I was getting married in just 7 weeks at that time).
So the first 6 inches is the rectum and it seemed to be the REAL problem area on my scope rerport right so..if that looks clear is it safe to say its all good above?
Posted 3/30/2010 4:41 PM (GMT 0)
I think it would depend on your symptoms all around...this is all new for you and how you're healing, but I'd take it as a more than likely. Maybe the rigid scope does the entire rectum but can't curve around the part that goes to the sigmoid (I can't remember, sorry_ .... I'm sure he'll use whatever is best for you. Maybe call and ask what the options and what you should ask the doc to do.

q
Posted 3/30/2010 6:02 PM (GMT 0)

quincy said...
Regarding the supps....stay on the enemas nightly for at least 2 more weeks then taper the enemas to every second night using the supps then. Do that for maybe 2 weeks then do the enemas every third night with the supps on the two nights between. If you continue that way till you're on the supps nightly...then eventually taper those.


q

I forgot to reply to this...

So would you say that I would be ok ending up on just the supps a few times a week for maintenance instead of the enemas?

Posted 3/31/2010 6:46 AM (GMT 0)
Only your butt will make that decision.

I'm making suggestions and showing some options in how you can do the tapering to end up on the supps nightly. Then you could taper them.

q
Posted 3/31/2010 12:53 PM (GMT 0)
Hey Q..yes I know but then I will end up on nothing rectal in the end?
I didnt think that was the goal..I thought it was to keep something for a few times a week?
Posted 3/31/2010 6:01 PM (GMT 0)
I didn't say taper them off to nothing....taper to a maintenance is always a good thing.

That could be maybe an enema a week and maybe a supp twice a week....

You have a way to go yet in my opinion. Many want to be completely off meds....I certainly don't suggest that ever. Besides, for you and your future plans, setting up a good knowledge base of your symptoms and treatment to increase, decrease and maintain will be a good thing.

q
Posted 3/31/2010 6:12 PM (GMT 0)
I dont want to be off meds. I want to stay as far as possible from how I felt in 2008..HORRIBLE.
I would like to see myself on 6 salofalk a day and rectals 2-3 times a weeks. I think this could work to maintain.
why would you say I have a ways to go? :( I thought I was getting pretty close?
going 1-2 times a day now, barely any urgency, no blood..and may be a bit mush at times but as you said that could just be what im eatting..
Posted 3/31/2010 6:23 PM (GMT 0)
no...just meaning while you taper......the process (in my mind) is ongoing and not finite. You've done so awesomely well....especially compared to where you were in the beginning. If the humira got you in a good state with your immune system to not overreact, it maybe gave you a good opportunity for the 5ASA meds to do their thing. If you can use them only that would be great in the way there's freedom for you to use the meds and not having to be constantly monitored by the GI.

I wouldn't suggest you taper anything until you have NO urgency. That will improve, especially since you only have it once a day.

The mush, yes....if it's not continual would more than likely be food-related or stress related. I'm having ups and downs with this cold (today isn't a good day with a new symptom of a sore ear, slightly larger gland and pain on that side with swallowing...ugh..and I'm still really tired..), with the stress of it I'm seeing smaller stool but the same amount. No urgency, regular. I'm now at every 3 nights enemas.

I may not be on the same page at this time....definitely clarify regarding my possible/probable misunderstanding.

q
Posted 3/31/2010 6:30 PM (GMT 0)
I am still on nightly enemas..not tapering anything..but really what is the cut off lol for 1-2 stools a day and feeling pretty good is it really realistic to use nightly enemas on and on and on? what if there is no change and things just linger the way they have been?
the thing mushyness has me stumped?

then i get all weird and think maybe i have colon cancer and something is obstructing in there making it thin..??? i know im horrible
Posted 3/31/2010 6:39 PM (GMT 0)
Yeah, the mind is an endless resource of self-punishment.....lol.

I think seeing the GI for a look-see to know where you are at this time is appropriate.

What you can do is try to taper using the Canasa between.

Always worth experimenting. I did it a lot in the beginning.

q
Posted 3/31/2010 6:45 PM (GMT 0)
I have been at 1-2 stoools a day for almost 3 months. The urgency has changed slightly. I guess I am on the looong program for reaching remission? lolol
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