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is your uc different every time you get a colonoscopy??

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Posted 10/7/2010 11:17 AM (GMT 0)
I was looking at my old reports:

2001 colonscopy: inflammation  in the ascending, cecum, distal transverse (dr told me after he thought i had crohns)

2006 colonscopy: inflamation in the rectum, sigmoid colon, distal sigmoid colon, ascending colon, and proximal ascending colon

12/ 2008 colonoscopy: inflammation in the recto sigmoid colon, ascending colon and at 15 cm promimal to the anus.

3/2009 colonoscopy(3 months after the last, i was on a clinical trial for entocort, no rectals): inflammation in the rectum and ascending colon.

my uc is patchy and skips, which i thought uc didnt do?  does all this mean i have pancolitis?

Posted 10/7/2010 11:37 AM (GMT 0)
It does seem that your scopes indicate Crohn's instead of Uc. Why did they change the diagnosis?
Posted 10/7/2010 12:51 PM (GMT 0)

There are a variety of factors which could explain this and it doesn't necessarily mean you have Chron's.  Did you have the same GI doc and the same path lab prepare your reports?  That's huge.  Different practioners operative pretty differently.  Second were you taking different meds during the course of these years?  That's also important to determine if you were having relapse or healing.  My reports over a decade show my UC going to a pancolitis to just some patches of inflammation due to the Imuran and fomer neglect.  Have you have had an upper GI scope done to look at the small intestine?  That would also be huge in determing what you have.

I hope this helps.

MyUC

Posted 10/7/2010 2:57 PM (GMT 0)
in 2001 i had a different gi dr and different lab.  he was the one who said crohns because of where it was located and the skip pattern

 

2006 and after: new gi and new lab- new gi dr suspected uc because of my symptoms and finally ruled out crohns by doing the ibd serology 7 test by prometheus which came out as IBD/Ulcerative colitis

 

as far as meds, since 2001 ,I was on asacol (which i was extremely non compliant with!!)with either canasa, hydrocortisone supps or rowasa.  I have only recently since 2009 been on lialda.

 

I have also had 3 endoscopys (2001, 2004, 2006) all of which show la class a erosive reflux induced esophagitis. duodenum normal.

 

what do you think?

Posted 10/7/2010 6:43 PM (GMT 0)
OK, thanks for the information.  What about the pathology reports.  Specifically what did they say?  For all of them.  Post back when you can.  Again nothing in the small intestine?

MyUC

Posted 10/7/2010 6:49 PM (GMT 0)
ILC, how did the non-compliance with Asacol work out? Was it a disaster, or did you get away with it at least for a while? I'm now non-compliant (or semi-compliant) with my Mesalamine.
Posted 10/7/2010 7:24 PM (GMT 0)

path reports:

2004: ascending colon negative for inflammation, mild edema in the lamina propria.  (nothing else was biopsied i guess??? hmm. no wonder i switched gi's)

2006: 

 right  colon  active chronic colitis no dysplasia no granuloma

recto sigmoid  active chronic colitis no dysplasia no granuloma

transverse   no abnormalities , no evidence of active inflammatoery bowel disease

then there is a photomicrograph with a statement:  colonic mucosa with mild crypt distortion. diffuse inflammatory infiltrate etc, no dysplasia or granuloma , diffuse inflammatory infiltrate consisting of etc etc... no dysplasia or malignancy.

there is also a diagnostic map showing where there is active colitis-  there are 3 sections, right colon, recto sigmoid and transverse.(and its 3 seperate section, not continuous)

in the clincal data section:  inflamed mucosa in the rectum, sigmoid colon , distal sigmoid colon, ascending colon, proximal ascending colon,.  Terminal ilium is normal.

2008:

cecum: no abnormality

ascending: mildly active uc

hepat flex: no abnormality

transverse: no abnormality

descending: no abnormality

sigmoid mildly active uc

rectum; mildly active uc

what do you think?

Posted 10/7/2010 7:34 PM (GMT 0)

the thinker:

as far as being non compliant with meds: 

I was dx in 1991.  flare resolved in a few months.  I did not take any meds, change diet or do anything for 10 years until 2001 when I flared again.

In 2001 i started on asacol and was non compliant once i was in remission. 

In 2006 got another flare, it resolved and i again was noncompliant with meds.

In 2008 I flared and I am just now coming off of a 2 year flare up.  I will never be non compliant with my oral meds again!!!! 

Moral of my story:  UC is not curable unless with surgery.  It will come back.  Everyone is different.  I was lucky.  I had 2 long remission periods, 10 yrs and 5 yrs.  But this last 2 year flare has been so hard to come out of.  If i had been taking my meds, maybe i would not have flared in 2008.  during this flare i have learned to religiously take my meds, oral and rectal.  I have had to alter my diet for the first time in my life, i started probiotics and supplements and I am finallly finally finally feeling about 95%.  who knows what the damage to my colon and my body is.

I do not advise anyone to do what i did and tempt fate and not take your meds.  It is the easiest thing in the world to take a few pills a day.  Esp ones that i had no side effects from. 

 

why are you thinking of not taking your meds?

Posted 10/7/2010 7:53 PM (GMT 0)
I've had to stop for the last few days as the peripheral neuropathy from them was getting progressively worse. It's more than a mere annoyance, it's absolutely crazy-making. I asked the GI after my colonoscopy a couple of weeks ago, "is there any possibility of adjusting the meds?" He said, "It's this or surgery. See me in three months."

So I started looking around, found one that sounds good, and I'll see him in five weeks. Meanwhile I've had no choice but to discontinue meds :(
Posted 10/7/2010 10:52 PM (GMT 0)
i love coffee:

All of your path reports are clearly consistent with colitis.  Meaning the pathologist could have written chron's/colitis but your reports are pretty standard for UC.  No problem with ileum, your disease just stops there at the beginning of the large intestine.  The fact that your UC has traveled around by itself does not concern me.  You could be healing and then ulcerate at different points in time and in different areas of your colon.  Chron's is distinctly different from UC in that it effects different layers of the colonic mucosa.  Still sounds conistent with UC.

Bottom line, my path reports are all slightly different depending on whether I am getting better or worse.  On  my last colonscopy I just had two patches of UC in my ascending and rectum, nothing else.   The pathology was still consistent with UC.  I am having another colonscopy in a few weeks and we expect a normal colon completely.  I think your consistent with UC.  Of course I am not a GI doc but just someone who has a good grasp of how this stuff works.

I hope I answered your question.  By the way I love coffee too! wink

MyUC

Posted 10/8/2010 11:08 AM (GMT 0)
My UC:

unfortunately, i had to give up coffee as it was making my flare worse. I plan to try and reintroduce it when i am fully in remission.

thanks for the info. you do have a good grasp.

so yours is patchy too.

then is my uc considered pancolitis since there is a history of it being  through out the colon?

The thinker:

i am so sorrry to hear that you had such a reaction to mesalamines- i didnt even have that excuse!  I would have to say that if you are in remission- you may get away without mesa for a bit- everybody is different.    if you are flaring, you need to take something to help.  Has your dr ever talked to you about entocourt? i did a clinical trial on that last year and it may reach parts of your colon- not the rectum, if i am any indication.  and can you try cortisone enemas or hydrocortisone supps?  are you in remission or flaring?  what other meds do you take?

Posted 10/8/2010 11:57 AM (GMT 0)

Sorry to hear about you dropping coffee due to the UC.  In fact I am gulping down a big mug of it right now.  Colon is quite right now by the way.  To answer your question, no you would not be considered to have pancolitis right now even though you have two patches of colitis at opposite ends.  You have a history of pancolitis meaning your whole colon was affected.  That's in the past.  When i had my colonscopy and my two patches came up, one in the ascending and the other in the rectum my GI doc wrote as the diagnosis left side UC because in his mind the ascending portion is probably healing and will dissapear and if I have any colitis left it most likely will be in my rectum.  Does that make sense?  I believe the same applies to you.  Your UC is ever changing, hopefully in the right direction.  Rememer the overall principle of healing of UC in general.  The rectum is usually where UC starts and then it travels up and it is usually the last part to heal.

Again I hope this all makes sense.

Again a gulp of coffee, a toast to your future remisson. 

MyUC

Posted 10/8/2010 1:02 PM (GMT 0)
thanks, yes makes sense

thanks for your input!

congrats on your remission!

i snuck a cup of coffee yesterday.. no adverse affects.... and it was soooo good!

today i'm being good, and drinking chammomile tea- its just not the same

 

Posted 10/8/2010 5:38 PM (GMT 0)
I_L_C:

"i am so sorrry to hear that you had such a reaction to mesalamines- i didnt even have that excuse! I would have to say that if you are in remission- you may get away without mesa for a bit- everybody is different. if you are flaring, you need to take something to help. Has your dr ever talked to you about entocourt? i did a clinical trial on that last year and it may reach parts of your colon- not the rectum, if i am any indication. and can you try cortisone enemas or hydrocortisone supps? are you in remission or flaring? what other meds do you take?"

*******************************************


My Dr. hasn't talked to me about much, as he doesn't seem to have very much time for anything. I think he's just there to prescribe drugs and perform surgery - as if I would ever give him the chance after he bungled my c-scope.

To be fair to him, my choices are somewhat limited by the fact that I have Hep C, which makes immunosuppressives a poor choice. Actually anything you can take seems to be a potential problem for the liver.

Looked up Entocort. Seems to be a good bet short term, with no mention of neuropathy in the lists of side effects I've seen. This may quite possibly be what my new GI will suggest. I'll see him in mid-November, which is a lot better than the late December appointment the other guy suggested. It was kind of like "my way or the highway, see you later", with this guy.

I'm not on any other meds. Just Boswellia, bromelain, salmon oil, chamomile and rooibos teas, yogurt, kefir, etc., anything anti-inflammatory that I can find. Been off Mesalamine for 5 days and so far doing ok, 4-5 bm's/day, no urgency, well-formed about 70% of the time, no blood. I don't think this qualifies as remission, but I seem to be out of choices for now. It feels absolutely weird to discontinue meds, like sailing in uncharted waters. I'll be resuming Mesalamine as soon as the PN subsides a bit, which should be soon. I've gone from "mild axonal neuropathy" a year ago to what now feels like the verge of irreversible nerve damage, so I'm really hoping this new GI will have some workable suggestions. He comes highly recommended, prescribes VSL-3 in some instances, and is known to discuss treatment options with his patients.

Bottom line: if he says surgery is the only real option, I'll be inclined to go for it, as it will be a second opinion, and , coming from a dr. who seems to be universally respected and liked.

Post Edited (the thinker) : 10/8/2010 11:51:56 AM (GMT-6)
Posted 10/8/2010 10:03 PM (GMT 0)
thinker:

if not in remission you sound pretty close- no urgency and no blood is good.

if you are only formed 70% of the time, you may want to do a search about fiber or metamucil tabs- as i was going into remission i started this.  it firms everything up- does not make you go more.  it really helps alot of people in the board- look into it

where is your uc?  i have found that the hardest place to get rid of inflammtion and where the orals dont reach is the rectum.  if you cant do rowasa enemas, have you thought of making your own vitamin e enema? i saw it on the boards- do a search.  i have great luck with rowasa but if i didnt i would try that.  you are basically sending meds right to the area that is inflamed.

 

Posted 10/10/2010 12:00 AM (GMT 0)
I_L_C:

Thanks for the info! I'll definitely be checking out the vit, E enemas. I love vitamin e oil, and it likes me :) I think there are some people who are allergic to E oil, in fact I know one such. What a disaster that would be if one was allergic to the stuff and introduced it into the worst place imaginable! *shudder* I think rather than cutting capsules open, I'll just use the liquid form, got a fresh bottle in the medicine cabinet, right now as I type.

I've been meaning to get into the metamucil also, but been putting it off while I monitor first, how well the Salofalk enemas work (very well), and how well I'll get by without them (not quite so well).
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