What is going on with me? Updated Advice please!

Hiya, i have had Ulcerative colitis for about 15 years now (I m now 28) I have never taken any medication for my colitis as i have had a real hard time dealing with actually having it , i have been trying to ignore it, but unfortunately it's not going away.

Anyway i have a few issues i would like some advice on if there is anyone who can help me?

My doctor has recently given me Asacol foam enemas to try, does anyone else use this treatment?

Lately my colon seems to be in spasm all the time, specially after i have eaten, i also feel sick and that makes me panicky, does this sound like Colitis symptoms or IBS? These symptoms have been really bad over the last 2 weeks, i have decided to just not eat as my bowels just wont stop going into spasm.

And finally i am extremely worried that for the last 15 years i have not treated my colitis, and therefore worried sick that actually i may have Colon cancer. How can you tell the difference between colitis and cancer without having to have a colonoscopy or sigmoidoscopy. is it likely that i would have bowel cancer at 28?

I would be very grateful for any advice, i am so worried about my condition. [img]/community/emoticons/confused.gif[/img]


Are you in the US? No the UK But moving to Canada in September!



Hope you feel better soon.

I think you need to colonscopy too. BUT I think you are ok. I am not sure how long I had the disease either before I got treated. I know it was severe when it finally got diagnosed, and no lasting damage was done.

I have been under the grip of fear at times myself so I feel for you. I think what physically going on is rightnow not what you fear, but maybe happening as a little wake up call to get you going in the right direction.

Thank you for the responses, I have myself booked in for a sigmoidoscopy in August, which should give the information i am seeking. I just have to get my head around taking my medication. I have Asacol foam enemas but was worried about using them because of possible side effects. I have to do something though as it is getting worse. I think i actually suffer from IBS on top of my colitis which is tough, but as my husband keeps telling me if i treated my colitis my bowel might not be as sensitive.

A sigmoidoscopy is not the same as a colonoscopy. I was diagnosed with ulcerative colitis about 26 years ago and have had all the tests available. With a colonoscopy, the doctor can see better what is going on in the entire bowel. I know it is very difficult to get your head around it all, but you have to. Then you can look at it more objectively.
Lin

If you should have benign or cancer polyps up further a sigmoid will not find them.  A colonoscopy doctor can remove the polyps, have them tested and when you find out they are benign you will be so relieved and "safe" for about 10 years - it is worth it!!

ElaineNY

Although you fall into a higher risk of colon cancer at certain benchmark years, the risk of cancer is still small. Given their questionable effectiveness, it's unclear whether colonoscopies provide much of a cancer-detection benefit, so I'd go with a sigmoidoscopy, too.

UC-related cancer is associated with flat lesions rather than polyps which makes cancer detection even more of a gamble. Many medical protocols around the world call for prophylactic colectomy for UC at the 20-25 year mark because cancer detection becomes unreliable.

The only reason i was more worried about cancer was the fact that i have not treated my colitis at all, so maybe that would put me at more risk. My colitis has been quite bad at times, but i seem to muddle through with no drugs, but i am older now and realize that it doesn't matter how much i can deal with the effects of colitis, the lining of my bowel has probably been really damaged. In fact if i think about it, i will start to panic :o(

I have asacol foam enemas, but am too scared to use them, i am not sure what to expect and if it's going to hurt or give me big side effects. I sometimes feel really depressed as i just don't see a way forward in getting my colitis under control. I hate taking medications, i like to be as natural as possible, so what am i going to do?

Listen and calm down. You are fine you are just in a big flare up. I agree you need to get tested every now and then just because it will calm you when the Dr comes out and says you are just inflamed and need meds.  As for Meds. I have been able to do off and on meds for years because i feel better and get normal from them. I will say this, I am in the same shape as you are now and am having to work on the meds to get me in remission. I am first trying natural. I am on probiotics, omega 3 and bromine and once a day i take beeno before my largest meal. It is getting better. If this does not help i will go to the real drugs. What i find scary is that this uc stuff is smart. If you notice lots of these guys are on meds for a time and then have no results. Uc is a type of illness that will always find away the drugs. It has to its the nature of the beast. So start the asacol and get better. Why we feel we need to prolong the illness is weird. Uc is also in the brain if you ask me we all worry so darn much about stuff that we just can not help. I wrote once on here misery loves company and it is very true. It helped me so much just knowing others were in the same boat as me.

Both is overkill.

I've never had an upper endoscopy, have never understood it to be a part of colitis diagnosis, and I'd almost certainly refuse it.  Cancer is unlikely.  I generally just put it out of my head.

Colonoscopy has no statistical advantage in detecting right-sided cancer according to recent studies (and only 60% or better average in detecting left-sided cancer).  Personally, I have been refusing colonoscopies and flex sigs, but if my doctor were withholding treatment, I would probably humor him with a flex sig.  If one is going to opt for a colonoscopy, anyway, there's no reason to have a flex sig at all.

 

Sorry to be snappish earlier, kops, but the overuse of endoscopy procedures costs everyone money and doesn't do much to help the patient or improve outcomes.  Why not keep a food diary before being scoped for IBS?

I think for you younger people less scopes is no doubt more important.  As for me - myself - I like the idea of the doctor going in there to find out what is wrong - up and down.  I had my first endoscopy two years ago to confirm GERD that other doctors SAID I had for years - like 35 years.  Because of my heartburn, etc. he was checking for errosion and cancer too.  Last year I had two colonoscopies and one sigmoid.  Whatever helps my doctor to help me - that is my way!

Right now today done with prednisone for now.  I want it back so badly - still considering asking both my gastro specialists about going back on low dose - like rest of my life if necessary.  Only problem is weight gain that I don't like and I think I can counteract that on a low dose such as 20 mg. or less.

ElaineNY

Early detection saved many of my friends and family's lives - including my husband!  I trust my specialist to know when it is necessary to test, etc.  Peace of mind.  Of course, I am 69 so think differently than when 40 for sure.  I have never heard (but know it happens) of anyone having complications from a sigmoid or colonoscopy.  They go fine for me and my husband and no after effects.  Just hate the prep, of course!  When I wen to my new gastro specialist (with 30 years experience) he ask to see all the scope results, etc.  He based my treatment on them.  Said I am too old for Remicade so have to do the best I can with rectal meds for now.  They are working - however slowly!

ElaineNY