New here and having a few questions

Hiya everybody. I found this forum by chance on the internet and I cant believe the wealth of knowledge thats on here. I have been diagnosed with left side UC in 1998 but I never really took this diagnosis very serious nor did I ever have a constant specialist that treated me. The doctor that diagnosed me (colonscopy) told me its a mild colitis, nothing to worry about. He did not explain anything just gave me some pills to take as soon as I see mucus. By the time the colonscopy took place I was months out of my first flare. I was just relieved that I did not have cancer because that was all I was worried about.

For the next few years colitis bothered me only a few times, so about every year or even two years. I always managed to get out of a flare without any medicine which I attributed to me having just very mild colitis. I never really seen blood (but a lot of mucus though) and do not have any pain or cramps either. I do lose a lot of weight though and have diarrhea that lets me run to the toilet anything between 10 and 20 times a day. I also am not able to eat anything during a flare. It is as if my throat is shut off for any food and if I force myself to eat something it comes out completely unprocessed. Most annoying thing is though that I have huge hairloss a few months after a flare.

So fast forward to 2003 I moved to England (from Germany) and here it is exceptionally hard to get hold of a GI doctor. I had a very bad flare that lasted for months in 2004 and my GP did nothing about it. Just asked me if I remember the tablets the doctor prescribed me in 1998. I did not go back and suffered at home. That flare made me lose 8 kg within a 2 month because of my inability to eat. But eventually I got back into remission so I just carried on as normal even though it took a long time to recover from the weight loss. Since then I only had mini flares which lasted about 1 or 2 weeks and I didnt think it was anything to worry about.

I had started to develop new symptoms though. I started having rectal problems with pain and mucus and urgency to go to the toilet but no diarrhea and eating was normal so I did not connect that to my colitis. I became terrified of rectal cancer! The problem stayed with me for over a year and then resolved by itself. It stayed away for a few years and came back with vengeance last year when I had a flare of colitis and after the diarrhea stopped finally my backside was extremely bad (terrible pain and lots of mucus, urgency etc) it took months to get better. I managed to get a referral to a GI doctor because I insisted to be checked out for rectal cancer.

By the time my appointment came through I was completely free of any symptoms. I had a colonscopy last week. The result is quietscent ulcerative colitis entire colon. The nurse afterwards told me that the signs are being seen all over my colon (healed ulcers). I am stunned at this diagnose because it does not sound as if its a very mild. I did not have the chance to talk to the doctor. I remember him saying that if I have problems to call his private secretary. I was handed over Pentasan to take every day but the nurse said I do not need to take it every day but only when I flare. That is what I am now confused about. I was a bit in a muddled brain state when I talked to her due to the drugs I was given before. I do not know what to do now if I take it every day or just wait for a flare. When reading all the different posts on here I feel my colitis symptoms are nowhere near as bad as some of the descriptions here as blood and pain is missing when I flare and especially that I always seem to go into remission without any medical intervention. So after that huge wall of text my question is, should I take the pentasan every day and escpecially should I get hold of my GI doctor if I start flaring to receive treatment and do my symptoms sound like very mild colitis?

I agree that a maintence dose of 5-asa meds is a good idea as long as they are well tolerated. It is a great hedge against a future bad flare that could land you in the hospital or surgery.

Call your gastroenterologist and ask for clarification on when you are to take your medicine. Usually it is taken every day for the rest of your life to prevent flare-ups, but double check with your doctor. It's okay to call and ask them any questions you have. It's hard to remember everything, especially if they're telling you it right after a colonoscopy. I'm sorry you have had to deal with this for so long. I'm glad you got a colonoscopy though and the doctors are putting you on some meds. Hope you feel better soon.

Yes, the longer you have inflammation, the greater your chance of getting colon cancer. Scary, but true, so it's advised we get colonoscopies every 2 years after we've had UC for 7-8 years. I would still call your doctor and ask them any questions you have.

WOW!

Annemal it sounds like you are not getting the medical care that you deserve.

A unique feature of UC is that its generally tends to progress continuously all the way around the colon from where it starts in the rectum. In other words it does not skip any areas as it progresses. It sounds like you were describing that you were dealing with pancolitis at one point and I don't know how any doctor can describe that as mild. The pain associated with pancolitis is nothing to sneeze at. I remember getting woken up in the middle of the night from a dead sleep by a terrifying agony to rush to the toilet when my left sided colitis progressed to pancolitis.

When I was put on medication it took months for it work, and I dare not stop or suffer the same consequences.

Since I have been put on medication, I experience what I would call "mild" flares every now and again that never progress farther than the rectum. On the rare occasion that I do experience a flare I would describe them as being slightly more bothersome than annoying. Nonetheless, they are nothing even close the same scale that I had previously suffered when just my left side was involved, much less when I had pancolitis.

My life is pretty much back to normal now and I can go places without having to worry about where the toilet is all thanks to the medication that I am taking.

Left sided UC Dx 1996

Meds

-azathioprine 300mg
-Lialda 4.8g
-Welchol 3.75g
-Toprol XL 100mg
-Hctz 12.5mg
-Omeprazole 20mg
-vitamin B12 1000mcg
-Vitamin D 2000IU
-folic acid 1g