Over 30 years in remission and doc wants to start meds

I apologize in advance for this long post. I usually stay in the prostate cancer forum. I am writing in regards to my husband Bob age 54. Today he went in for his first colonoscopy since he was 18 years old. When he was in high school he was diagnosed w/ UC, dropped down to 90 lbs., became diabetic because of the steroids, was hospitalized and almost died. At the time he was put on prednisone and azulfidine. After a long fight he finally went into remission and on his own stopped taking all meds. Never had another flare or problem for over 30 years. When he had his routine colonoscopy (gp insisted he needed one because he's over 50) the doc said he definitely still has UC, that his colon is red and inflamed and he has pseudo polyps from scar tissue from the UC, as well as internal hemorrhoids. The doc immediately prescribed him Lialda 4 pills once a day. After he read an adverse reaction can be worsening UC symptoms he is refusing to take it because he doesn't have ANY symptoms at all. Should he be on some kind of medicine even though he doesn't have any symptoms? Since the colon is inflamed does this mean he truly isn't in remission? Are there natural remedies he can do that could help instead of pharmaceuticals? A different class of drugs w/ less side effects? Any advice or experiences are appreciated.~Miki

Marauder thank you so much for responding! This is a condition I know nothing about. I can tell all about PC but I never even researched the UC because he would always talk about it in past tense and say he was fine so I never questioned it. None of his gp's ever said anything about either until this new gp he just started using about 6 months ago which was the doctor who found his prostate cancer. We now know that it does increase the risk of cancer but so far I haven't found very informative sites that simply explains UC. I don't even know in 1979 if they suggested he be scoped regularly. How often should someone with UC have the scope done?~Miki

Some oral med makes sense. If he is intolorant, it will be quickly apparent.

With 30 years of untreated inflammation he is at very high risk of colon cancer. Regular screening by scope is recommended.

Did they biopsy the removed pylops. Ws there any per-cancerous cells?

ARangel14 said...
Marauder thank you so much for responding! This is a condition I know nothing about. I can tell all about PC but I never even researched the UC because he would always talk about it in past tense and say he was fine so I never questioned it. None of his gp's ever said anything about either until this new gp he just started using about 6 months ago which was the doctor who found his prostate cancer. We now know that it does increase the risk of cancer but so far I haven't found very informative sites that simply explains UC. I don't even know in 1979 if they suggested he be scoped regularly. How often should someone with UC have the scope done?~Miki

Not a problem. Honestly if I wasnt diagnosed myself I probably wouldnt have even known this disease existed for a very long time. To answer your question about frequency of scopes, at his age and the amount of time hes been diagnosed, he should have a screening colonoscopy every year. This is mainly to check for cancer or pre-cancerous lesions.

As for resources regarding UC, there are a LOT out there (including this forum). These two I have found to be particularly helpful to newbies:

http://www.ccfa.org/resources/webcasts.html

http://www.uofmhealth.org/health-library/uf6020

I would also recommend searching "Ulcerative colitis" on youtube as there are a number of very helpful and informative videos. Just be cautious about videos claiming to have some weird cure or treatment for the disease; there are a lot of snake-oil types out there for IBD in general. Also, dont be afraid to ask any questions you have here on the forum. It is VERY active and there are a LOT of people with a lot of knowledge and experience with the disease. You may also consider joining a few Facebook groups if you are on Facebook.

I was thinking the same thing gary said. I wouldn't think you could have a colon that looks like that and no symptoms. If the colon is inflamed, he needs to take something.

Thank you all so much for the information. This is a lot for me to take in. I've been combing over posts in this forum. Yes they did biopsy the pseudo polyps. No results because he just was scoped today but doc said he didn't think cancer. Procedure notes read: normal mucosa noted in terminal ileum. Small internal hemorrhoid a were noted. Patchy erythema with loss of the vascular pattern was present throughout colon. Pseudo polyps were present in the sigmoid colon.
After reading here I questioned him again about symptoms. No blood in stool, no mucus, no abdominal cramps, no uncontrollable urges to go, 2 bm's a day that are soft but not diarrhea. First prostate cancer now this. I'm going to stress myself to death worrying over him. I'm also not happy with previous docs who knew he had UC history via prior medical history paperwork and not one asked him what medicine he took for it or anything about it. I feel so stupid never bringing this up to a doctor but thankful we found a doctor that finally called us out on it and insisted he get a colonoscopy.~miki

I believe he's had no symptoms. Lucky him!

Just wondering the possibility that the colon prep caused inflammation or irritation of some sort? That prep always makes my symptoms worse.

Good thing is that you've caught polyps, very unlikely cancerous but more frequent scopes may prove to be valuable.

As for meds it's a personal decision. Perhaps he didn't have UC to begin with?? Could have been a parasite, c-diff....anything really. That was the past & he currently shows inflammation...he could try turmeric or diet, omega 3,s if he didn't want the medication route. It couldn't hurt to try those things if he's really concerned.

Best of luck!

Thank you all again for all the shared information. After I read all of your responses and used all of your information, I finally convinced him to go ahead and take the meds. He goes back to the doc next month. Thankfully he's never had any more physical symptoms since 1979 but on the other hand because he never flared again he didn't take this disease seriously as far as keeping abreast of what was happening in his colon. He was so traumatized from the hospitalizations, toilets of blood, cramps and eventual diabetes from the steroids when he finally became symptom free he put it behind him. (Out of sight out of mind I guess). I'm wondering what's next? Now that he's on the meds will he have to be scoped again to tell if the inflammation is better?~Miki

Hi all! How will he know if it's working if he doesn't have symptoms anyway?

Your husband got a wonderful 30 year hall pass!

Don't worry! He sounds fine!

Hi you all,
I am back with additional information and even more confusion. Hubby went back to GI doc two days ago. The doctor that did the colonoscopy had a family emergency so we had to see one of his associates. This doc stated that the actual biopsy came back hyper plastic polyps not pseudo polyps that the other doc had them noted as on his report. His blood test came back no evidence of Crohns or UC. The most recent doc says that since the path report on the polyps and the blood work say no UC plus the fact he has never had another flare even though he wasn't on medication, that he believes he does not have UC. He ordered one more test on a stool sample called a fecal calprotectin test that he says definitively will rule out UC. So when dealing w/ UC what is more reliable? The doctor seeing the colon and noting the loss of vascular pattern and what he calls inflammation or the blood test and fecal test? I'm sorry if this sounds like a dumb question. We completely have to rule out UC for hubby to have salvage radiation therapy for his prostate cancer and his PSA is rising which could indicate SRT is in his future so a definitive answer will be needed. I know his GI doc would have to work w/ his RO if it comes to that but I would really like to know what the standard is in determining this disease.~Miki