Intro. (long) with a question

Hi,

I have been reading posts for a few days now and registered today. Here's some info about me: I am 54 yrs. old and diagnosed with UC. I had IBS-C for many yrs. and when I suffered an impaction in 2001, I was scheduled for a colonoscopy. No reason of the impaction was found, colon looked healthy, and the biopsies were normal.

Then in 2003 I developed severe pain in my rt. side and awhile later had just a spot of blood and pain. My PCP sent me to another GI dr. and I got scoped again. I was told that I had erythemas from my rectum all the way through my descending colon and diagnosed with UC. I was told the biopsies showed inflammation and I had to get an upper gi series done. Then he changed my diagnosis back to IBD and wrote my PCP that it could be...he named every possibility under the sun.

My PCP had me change my GI while remaining in the same group. I found out my biopsies were normal and something else he lied about that I can't recall now. I was asked to have another colonoscopy and refused. After all I just had one, couldn't they use what info they found? So, time went on and they asked me repeatedly to have another colonoscopy. Either 2006 or 2007 (I think '06) I had heard of the Gatorade prep, when they asked me again to be scoped I said if I could do that. They said none of the drs. use that prep, so I declined. They called right back saying I could. LOL

They found I did indeed have UC, it was throughout the colon skipping the transverse. (Everything I read said that this points to Crohn's, but I tested neg. for the gene and the GI said my damage wasn't deep.) Btw, this was the 3rd GI I saw in the group and I am sticking with him. He is mild mannered and easy to talk to.

I have been taking Lialda and doing well, until about 6 mos ago. I didn't tell the GI right away, because it is a mild flare. When I did he tested me for C diff, because I am on long term abx for Lyme disease. He increased the Lialda to 4.8 g and it hasn't made any difference. Then he did a sigmoidoscopy, but since the prep worked so well he was able to do 3/4 of a colonoscopy. He said I had inflammation the whole way (and a pseudo polyp which turned out to be an actual polyp and now I have to have another scope to remove it ).

He wants me to start 6-MP and that is where my question comes in. My flare is mild, I only have on avg. 2 bm's a day. I never had obvious bleeding. I am not in pain and I am not getting up during the night. Would you take 6-MP if you were this mild? Plus, I had 3 formed bm's this week.

If you hung in this long, thank you.

Oh, and I have a lot of other conditions and all may stem from the Lyme disease. I am on many meds and sups.

j_liz

PS I use Canasa, also.

Post Edited (j_liz) : 2/11/2011 3:39:03 PM (GMT-7)

Any rectal meeds other than canasa as it may not be reaching high enough; I'd try enemas before 6 mp

j_liz,

I also have a mild IBD (Crohn's, first diagnosed as proctitis) and I take the drugs you see in my signature. I don't have nearly the kind of inflammation you do in your colon, yet I do have lots of extra-intestinal problems, like joint pain (including arthritic changes in my sacroiliac joints) and anemia. I think it's worth trying to treat the illness to get to remission (no inflammation) so that you can avoid the long term damage this illness can do to your body (you don't say how old you are). Is it possible, for example, that the joint pain or other things you're linking to Lyme might actually be from the IBD???

Whether 6MP is the answer or not is something you should discuss with your GI and/or PCP. It sounds like you don't really trust the GI group you're with, so perhaps you should seek out referrals to other groups or docs. My GI is very conservative and will not put me on immune modulating drugs, even though my rheumatologist recommends it for my joints. I just haven't got the need right now to push it, but I trust my GI to know that I could. You should have a good relationship with your specialist too.

PS I forgot to mention that my LLMD started me on LDN a couple of wks. ago. It is for my Lyme treatment, but I heard it is used in Crohn's disease, so I don't know why it wouldn't work for my UC.

imagardener2,

I will add that to my list of questions. TY

On another thread you said, "If you have low energy the best thing to eat is protein and good fats. There are quite a number of vitamins in meat and good fats (olive oil, coconut oil and others) are also good for your colon and body. Don't take too much oil at once however since it can lead to D."

Does that include fish oil? I am taking 9 g's of fish oil as recommended by my LLMD, not my GI. I recently started to take coconut oil, but it's still hit or miss. Do you think the fish oil and tsp of coconut oil might be too much?