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LondonRed
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Date Joined Oct 2007
Total Posts : 1190
   Posted 8/11/2008 10:24 AM (GMT -6)   
I am devestated especially as I had a clean scope only 2 months ago.
 
I have been diagnosed with Indeterminate colitis (moderatively active, entire colon) - by entire colon he means it is patchy all the way through but not solid all the way through. So basically I have Chrohn's Colitis or Ulcerative Pancolitis.
 
I have no pain, no other symptoms except blood and D - IO am devestated and probably have a higher risk of cancer too.
 
:(

Diagnosis: Oct 07 - Non Specific Colitis on right hand side. Medication: 800mg Mesalazine (Asacol) 3 times a day. Latest Symptoms: Jun 08 - Bleeding returns with diarrhoea after taking meds for stomach ulcer.


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/11/2008 10:58 AM (GMT -6)   
I'm confused at why they would suggest ulcerative pancolitis if it is patchy? I was under the impression that all colitis has inflammation all the way through with no patches of healthy bowel; Crohn's is where it gets patchy. Like when they did my scope, I had inflammation straight through to the sigmoid, and the rest of the bowel where it wasn't active was all scarred.

Sorry to hear you didn't get good news :( Are they going to be changing your treatment plan??


Female, 23, Ulcerative colitis (pancolitis) diagnosed at age 15; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use. 

Current Meds:
Lexapro 10mg
Trying out Lialda, 2 pills/day

 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/11/2008 11:00 AM (GMT -6)   
Oh also as for the risk of cancer, it only really increases after having the disease for 8 or so years and even then it's not a drastic risk increase or a guarantee that you will develop cancer.

Female, 23, Ulcerative colitis (pancolitis) diagnosed at age 15; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use. 

Current Meds:
Lexapro 10mg
Trying out Lialda, 2 pills/day

 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/11/2008 11:02 AM (GMT -6)   
They are also using the UC thing because I don't think mine looks 100% like Chrohn's Disease. There are 6 patches on my colon but none of it is joined up. The inflammation has gone from mild to moderate so obviously I am in a flare. They have changed the meds and want me to take Pentasa and Clipper Steroid for 4 weeks (which is Beclometasone Dipropionate 5mg).

Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/11/2008 11:03 AM (GMT -6)   
Yeah but in 8 years time I will be a Cancer risk and that frightens the life out of me. This is devastating.

Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/11/2008 11:07 AM (GMT -6)   
I understand that, believe me. I'm verging on 9 years with pancolitis now and every time I see blood or feel tired or have skinny stools I think "What if it's cancer now?" But really, having colonoscopies once a year if I ever did develop cancer they'd be able to catch it early enough that surgery would take it out and it wouldn't even be a problem. But still, the "C word" is just really scary to even think about!!

To be honest, I'm hoping to have surgery within the next year or two when I'm secure in my job so I don't have to worry about any of this anymore.

When will you know the biosy results?

Female, 23, Ulcerative colitis (pancolitis) diagnosed at age 15; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use. 

Current Meds:
Lexapro 10mg
Trying out Lialda, 2 pills/day

 
 


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 714
   Posted 8/11/2008 11:20 AM (GMT -6)   
London,

Let's put the cancer risk in perspective. If you had UC from age 18 to age 80 then the chances of you getting bowel cancer are approx. 4%. While no one likes having to deal with the cancer risk as part of UC the true risk is not as alarming as the websites make out e.g. some websites quote the 4% statistic as being 32 times higher that the probability of a non UCer having cancer. This is indeed true but the chances are still less than 4 times out of 100. Don't be thrown off by the "32 times" higher and "substantially greater risk". Go with the pure statistics.

I wish websites wouldn't use such phrases. Patients need the facts in abolsute terms not in relation to a "normal" person, who by definition doesn't even exist!

D
Med free for a bit as I needed a break from Asacol
 
Probiotics
 
"Whatever you do in life don't berate yourself too much nor contragulate yourself too much. Your choices are half chance. So are everybody elses'"
 
 
 
 
 
 
 


tabitha m
Regular Member


Date Joined May 2007
Total Posts : 139
   Posted 8/11/2008 11:21 AM (GMT -6)   
London Red a few positives
 
1 . At least now you know what you have and it can be dealt with and once under control managed.
 
2 Once you have had Colitis for 8 years you will have a c-scope every year , not many people get that ( i know its not the best way to get  a yearly scope but hey trying to point out the positive bits )
 
3 i have been on pentasa 12 months now and apart from a tiny blip at the moment which fingers crossed is just a blip , it has worked fantastic for me .
 
4 It isnt the end of the world ( even if it feels like it is at the moment ) It will get better .
 
Have a good sob , wail , etc then pick yourself up and get the better of it !
 
Good luck
 
Kerry .
Diagnosed Proctitis 2003
leaped to Pancolitis May 2007
bye bye Pred (fingerscrossed )!
2000mg pentasa a day
omega 3
Allergic to Sulphalizine
In remission since june
Multivitamin and calcium supplement
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 8/11/2008 12:31 PM (GMT -6)   
Hi London....I can't see the UC diagnosis at all....CD makes sense. Regardless, the 5ASA meds are believed to help protect the colon from cancer.

Regarding c-scopes every year....that's not what happens....there are always risks with c-scopes, and I'd assume the docs wouldn't want to do them yearly if it's not warranted.

If biopsies are totally clear precancer/cancer-wise...yearly scopes aren't necessary.

Hope you feel better soon once the meds kick in.

The doc should also take cancer marker blood tests yearly if there's a concern.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/11/2008 12:35 PM (GMT -6)   
There is a colitis diagnosis in some cases of patchy colitis if IBD doesn't show on Biopsy.

Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 8/11/2008 12:39 PM (GMT -6)   
colitis...not UC then? It could be because you're in early stages of CD where it affects only the lining of the colon.
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/11/2008 12:48 PM (GMT -6)   
More good news then. Im so distraught. It seems like a death sentence.

Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 8/11/2008 12:53 PM (GMT -6)   
Well, you best eventually accept it. It's not a death sentence...we all live with all we have. Not that it's a woohoo time, however...it is what it is. There's treatments and the goal is for you to keep it all happy in there as best you can.

Give it a few days to sink in and keep us updated as to how you're doing.

Keep things in perspective. Not easy for you, I know...but you need your energy to feel better, not worse.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/11/2008 1:23 PM (GMT -6)   
Another thing, why do they need to do biospies when they have clearly seen the blood and clearly seen the inflammation? Patchy Inflammation restricted to the Colon is Chrohn's Colitis, if it is all the way round without gaps then it is Pancolitis. So give me the steroids for a month and pentasa and what else is there to wait for? I am sick to my back teeth of GI's and I am sick them telling me "you're fine". Well I wasn't was I doctor?
 
The look on his face afterwards, he was in shock and embarassed after his "I am been in this game 28 years and I know you don't have IBD just by looking at you, your blood work and symptoms"....well you were wrong Sir. 


Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 8/11/2008 1:47 PM (GMT -6)   
The conclusions they reach after seeing the gut on a scope and the conclusions the biopsies support can be very different from one another. One possibility is that there's inflammation not visible to the naked eye (or the eye assisted by scope) even in the non-patchy areas. And that might mean that the inflammation actually is contiguous within the colon, which would be helpful to know. Another possibility is that the inflammation has more Crohn's-like features, which would help with diagnosis also. Also, even in the early scopes, they are screening to be sure there is no dysplasia. So the fact that they are taking biopsies is a good thing.

I vividly remember how burdened I felt by receiving the diagnosis. If I had known then what I know now, I would have had surgery almost immediately, and might have saved myself a lot of heartache and debility in between. My thoughts are with you.

LyndaC
Regular Member


Date Joined Aug 2008
Total Posts : 63
   Posted 8/11/2008 2:05 PM (GMT -6)   
London the biopsies are necessary to confirm the diagnosis. You have an answer now. You can start moving forward. It's not a death sentence. As someone has already pointed out, perspective is key, the risk of cancer for all of us is minimal and with regular monitoring by ourselves as well as the doc IF it did develop it would be early stages and treatable.

you have two choices now

1. Allow yourself time to digest it all, work with the docs to bring you out of the flare up and regulate your meds so that you lead a normal life as much as possible
OR
2. You worry yourself all the time about it, remain angry at the docs and make your self worse. The doc made a mistake, you may not have had the condition two months ago, he may have been correct in his diagnosis and as you said yourself it was a clean scope. He can't diagnose what isn't there. However, you have developed the disease and it's time to educate yourself and help this along, you have the support of this forum and now that your doc has made the diagnosis he will hopefully prescribe the right meds, the bleeding will stop as will the D.

Now that you have the answer you're on the right road.
40 year old mother, 3 children.
Suffered with stress for 5 years and quit smoking 2.5 yrs ago.
Diagnosed acute UC in June 08.
Asacolon 2400mg per day
Protiem 
Prednisone - presently on 5mg per day....Finished on Friday!!!
Also taking Calcium, Acidophilis, Zinc, Vit C, Vit B complex, Omega 3 and Evening Primrose
 
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/11/2008 2:23 PM (GMT -6)   
I know guys and thanks for your kind words. I need to get the treatment, get into remission and keep it that way. I am scared of Cancer and I am scared of things getting worse and me becoming sick. Yet to this day God willing I haven't felt unwell at all even during flairs.

Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/11/2008 2:26 PM (GMT -6)   
It can take a very long time to get an IBD diagnosis. For me it was about 6 months but I actually had symptoms off and on for years. I understand the anger and the fear; I have been there. The best thing you can do for yourself is to get educated about your diagnosis and follow the recommended treatment regime. If you really don't think you can ever connect with your GI again, then move on to another one and start over with a fresh relationship. My GI and I butted heads fiercely in the beginning but I finally realized that he knew what he was doing and I needed his help. Most people with both Crohn's and UC live full lives and die with their colons and of some other unrelated disease. Most IBDers never have to resort to surgery for either cancer or refractive disease. Chances are you will fall into that group. You need to be proactive, that is after you have your poor-me party (which is well deserved).

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/11/2008 3:02 PM (GMT -6)   
Thanks Sue. My GI is fine, it was his partner who has been seeing me in his absence and both are two of the best in England. So no complaints from me, I just feel this latest one played it all down too much and didn't realise I was sick. My normal GI emails me and even called me today from holiday to ask how it went. He said not to worry, he said the Picolax sometimes inflames the bowel to even worse and for me to start back on 5-ASA and take it from there. He said just because it is "Moderate" or just because it is Patchy, or even if it is all the way it doesn't mean that it is bad... he said the key thing is "how you feel" and if you feel good then it is probably going to be fine.

I am seeing them both next week.... and starting on Clipper for a month and then Pentasa.


Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/11/2008 6:19 PM (GMT -6)   
This should make you feel a little better about the cancer thing...I've had crohn's colitis (CD affecting the colon) for 17 yrs straight without any complete remission and I still do not have cancer, I know everyone is different but honestly if I don't have cancer with having an inflammed colon for almost 20 yrs straight then you shouldn't stress too much over the cancer risks increasing...not to mention, people with IBD have a much better chance of cancer being found early enough because we tend to get scoped more often than the average bear.

And the thing about UC or crohn's colitis, the same meds are used to treat both forms and if you do have CD rather than UC and your CD ends up affecting your TI then there are also meds that are targeted to treat inflammation in the upper GI tract as well...don't stress over things you have no control over, it's not worth your health.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


kathleen
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/11/2008 8:01 PM (GMT -6)   
I was devistated when I got my diagnoses 17 years ago. And I was quite ill, nine days in the hospital on TPN, solumendrol and the whole shot. But I have been amazed at how healthy I have able to remain with some noteable exceptions. I work at it.  I stay in touch with my body, my stress level, and my surroundings.  I focus on building health. I take care of myself. I can honestly say that for the most part, I feel better and am happier than I was before the diagnosis.

LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/12/2008 12:10 AM (GMT -6)   
I don't know where to start. This morning I have been 3 times already since 4.30am - it's now 7am in London - each time it has been either soft stool with blood or D with fresh blood. My rectum seems so sore and inflammed. I am still taking Asacol while I wait for Pentasa and Clipper, but will Pentasa even work? Isn't that the same as Asacol? And given the inflammation is all over the colon will Pentasa reach my rectum?

My doc told me to expect IBS and Piles 99.9% before my Colonoscopy, and was even laughing before the scope saying it's nothing so you can understand my shock at this. I am all over the place.

Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 8/12/2008 12:27 AM (GMT -6)   
at the risk of sounding like a total jerk... here goes...

just relax. its not the bloody end of the world (pardon the pun)...
i go to the toilet 20+ times a day and there is massive amounts of blood everytime.

dont panic.
panic will make it worse.
and don't be so "shocked" as the last few days, all your posts went on and on about how you "knew" you had UC or crohns. your determination to "have it" is probably what gave it to you... being that your previous scopes very shortly ago were "clean".

again, i apologize for sounding crass or rude (as happens with writing instead of speaking)...
like quincy and other have said before.. keep it in perspective, it is NOT a death sentence.
steph - 32 - female - UC since 2000
currently flaring again..  grrr! (triggered by stress - grrr)
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
prednisolone 25mg x1 a day (ick ick and did i say ick?)
tumeric capsules x3 a day
 
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/12/2008 2:29 AM (GMT -6)   
Thanks kazygirl, you are probably right, I called it to me and now I have to lose it and get on with my life. I have a new job next month and I want to be fresh and ready for that. Thanks for the advice.

One thing I wills say though is that both flares happened after some serious anxiety/stress bouts.


Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.

Post Edited (LondonRed) : 8/12/2008 3:06:19 AM (GMT-6)


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 8/12/2008 3:33 AM (GMT -6)   
my current flare is from stress as well.
stress will kill us all eventually. its so bad yet so hard to stop.

i just wanted to say sorry if i sounded like *****.
my hubby said ive been very moody today.. stupid prednisone. i get so grumpy and grouchy sometimes.
sorry.

remember.. just breath in.. breath out.. breath in... breath out.
hehe
steph - 32 - female - UC since 2000
currently flaring again..  grrr! (triggered by stress - grrr)
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
prednisolone 25mg x1 a day (ick ick and did i say ick?)
tumeric capsules x3 a day
 
 
 

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