Not good colonoscopy results

I had my annual colonoscopy today. I have been doing Remicaid for the past year but felt like it wasn't working and also started noticing frequent joint pain, headaches, and just a general not well feeling. I made the decision to quit doing Remicaid and so I am 15 weeks off. I was in the middle of a flare, which I think started because I took antibiotics for a sinus infection. I'm
Supposed to be doing prednisone right now and my GI plans to start me back on meds next week. Probably Asacol.
I haven't been taking the prednisone because of the side effects and the way it makes me feel. I may or may not take it.
Anyway my colonoscopy showed ulceration throughout my entire colon and one polyp type nodule that they biopsied but didn't remove (unsure why)? The report said it oozed when they biopsied it.
This is a new GI and he mentioned that at some
Point surgery is necessary if things don't improve. That scares me because I'm not ready for that.
Should I just take the prednisone and live with the side effects or just wait to try the Asacol? I never felt the Remicaid was working and feel like basically I was off any medicine that could help for a whole year. I wonder if a different med can help?

It does not seem correct that you were on Remicade but have never been on Asacol.  I took Asacol years before I ever took Remicade.  Mary

 

Lisa,

Welcome to the forum.

Sorry about your flare and recent colonoscopy results.

I too am a little confused, why didn't they start you off with the usual mesalamines - oral + rectal meds before starting you off on remicade?

What was the reasoning behind not removing the polyp?

There are other things you could do besides trying mesalamines: diet mofidication, supplementation with probiotics like VSL #3, slippery elm powder, and L-Glutamine. And then there's LDN, low dose naltrexone - cheap drug with almost no side effects which has put many in  remission.

But don't expect your doc to tell you about the LDN because big pharma doesn't make money on it.

There are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

I realize I didn't provide much info. I was diagnosed about 22 years ago. Tried various drugs, including prednisone. What finally worked was methotrexate. After that I used Asacol for heads, then colazal and then pentasa. I had one bad flare which landed me in the hospital. I hadn't been taking my meds like I should have been. I went back in pentasa, 6 mp and that seemed to help. My colonoscopies after that showed mild colitis. I had them every two years and then yearly. Would show mild to moderate colitis, sometimes throughout the entire colon sometimes not. In September 2011, I had a routine colonoscopy. I was having no symptoms at all and felt better than ever. The gastro (a new one for me) wouldn't even finish the colonoscopy because she felt there was too much inflamation. She told me I needed to either do high doses of prednisone (which has never helped me before) or start remicaide. I was reluctant to do the prednisone because I was scheduled for a hernia surgery shortly after the colonoscopy and I worried it would affect healing. She then said Remicade was my only option so I agreed to do it. I was only doing remicaide, no other meds which worried me. I could tell that the Remicaid wasn't working after about 6 months but kept doing it. It seemed like the side effects kept getting worse and I also gained 12 pounds (I'm quite conscious of weight gain and despite working out more than ever, sticking to a healthy diet, working with a trainer ) I continued to gain weight. I also began noticing achy joints, nausea that lasted after the infusion for days, etc. I also started having diarrhea and bleeding between infusions and ultimately decided no more remicaide. I started having a full blown flare about 7 weeks after my final infusion. I knew I needed to be on some type of medication, but didnt want to go back to that GI. Throw into the mix that I has gall bladder surgery, my husband has bad neck problems requiring treatment and our two small kids, it just took a bit to find someone new. My last remicaide was on September 13. I took antibiotics on October 10 for a sinus infection, and right after that, my symptoms were out of control. During the time I had the sinus infection, we had been out of the country on a cruise, and my daughter had a stomach virus, and there was also a horrible flu strain the ran through our group of friends /play group. It was probably a combo of things. I began taking probiotics, and upped my vitamins and supplements. Things kept getting worse which promoted me to find a new GI on Monday of this week. He ran a ton of tests (blood, cdiff, roto, Norwalk, parasite) And started me on prednisone. Ive taken it for a few days (except yesterday the day of my colonoscopy).
I meet with him next week to discuss my biopsy etc and he mentioned starting Asacol as well. I'm continuing to take probiotic. Not sure why he didn't just prescribe Asacol yesterday but he may not have been prepared since he didnt have my labs back and they basically got me in on an emergency basis.
Looking at my colonoscopy results and comparing the pictures from last year (again I'm obviously not medically trained) I dont see any swelling and inflamation just some cracks and ulcerated area and the one polyp type thing. He did incidcate moderate colitis with pan colitis secondary to UC.
If I had to describe my health over the years I would say it has been really good. I did have some increase in diarrhea during times of stress (my parents died within 2 years of each other and I cared for both of them during their illnesses --cancer and Alzheimer's) but overall I sometimes forget I have it. I have had some ongoing female issues which led to an OB prescribing Naproxen a month ago as well which I questioned but she told me it was safe. It seems like my symptoms started in full force after antibiotics, exposure to flu virus, taking naproxen)
Sorry I was vague before. I'm sure a lot of it was the drug induced colonoscopy cloud!! I think I needed to vent. I lurk on the boards a lot and am saddned by a lot of the stories. There are tons of you who have been dealing with way more than I have ever dealt with, and seeing what other people have gone through makes me feel bad about complaining!

So you've never used rectal mesalamine? And why have you not gone back to methotrexate?

Also in response to rectal mesalamine, I may have used something when I was initially diagnosed but maybe because my areas of inflamation are throughout??