My Diagnosis

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??

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).

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?

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 .

There is a colitis diagnosis in some cases of patchy colitis if IBD doesn't show on Biopsy.

More good news then. Im so distraught. It seems like a death sentence.

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. 

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.

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

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.

:)

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.

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.