Opinions please

Hello anyone and everyone.

I'm going to see my GI for the second time, tomorrow. Of course on my first visit I didn't 'know' anything about UC, so I didn't really know how/what to ask. Well, I've been on Mesasal 500mg - 2tabs twice a day since late Feb, and I've gone from about 6 bms of D and blood and mucous to 1 or two, sometimes 3 soft stools with occassional blood and/or mucous (that seems to be tied to my menstrual cycle. I've been gluten free and mostly dairy free since Feb and I try to stick to real food, mostly pasture raised animal foods and organic when available. I've consulted with a functional medicine practitioner and on his advice I take Mutaflor, vitB12 and magnesium, I also started to ingest liver from pasture raised beef. (He couldn't help me a ton because I couldn't get the comprehensive blood work done. My GP begrudgingly ordered just a fraction of the bloodwork I asked him to do). I'm feeling pretty good though still apprehensive about the possibility of having to go to the bathroom because I've had a few problems after ingesting something I probably shouldn't have (like ice cream).

So, I still don't know much about this disease, though I'm learning a lot here. I do feel pretty fortunate that I'm responding to treatment after learning about how so many of you struggle. I've promised myself not to take my 'progress' for granted, believe me.

Anyway, I'm looking for opinions because I don't know how to proceed. I'm wanting to ask if my doc will put me on LDN (because I also have another condition that is considered to be auto immune). Do I just leave well enough alone? I'm pretty sure I will at least get my dosage of Mesasal upped since I'm still not 'perfect'. Do I still ask for rectal meds?

Just for further information, I am in Canada and most doctors just practice 'standard of care', especially if they don't know you well. I mention this because when I ask about LDN, I plan to suggest it seems to be a safe drug and since I'm relatively healthy there should be little risk.

I am also planning to ask what my exact diagnosis is. The GI who did my scope told me my whole colon was affected, the last part 'on fire'. When I talked to my GP he said I was mild. I did a stool sample two weeks after I started bleeding (a full six months before my colonoscopy...yes! it took THAT long to get one done) and was told it came back OK. I assume now I was tested for C-diff. Would it be important to have a more comprehensive stool analysis done? Looking for parasites maybe?

Any suggestions welcome, and thanks.

It sounds like you're doing well but aren't quite in remission yet. I would definitely ask about rectal meds.

Use of LDN for UC is still considered "off-label." Many drs will not prescribe it because it doesn't have enough concrete, peer-reviewed, placebo-controlled scientific evidence that it is safe and effective for people with UC. You may get lucky and have a dr willing to experiment a bit but don't hold your breath.

A comprehensive stool sample should have been done to rule out infection and parasites. Call and ask what you were tested for.

absolutely ask for rectal meds..Rowasa to start.

If he says you don't need them....say you want to try them.

hope all goes well.
q

Hey, thanks for all the replies.

I had my appointment and got to ask questions and ended up with no change in medication whatsoever. The GI was very pleased that I'm responding well to a relatively safe, relatively low dose of mesasal. He did not feel it was in my best interest to change anything. The reason he gave me for not prescribing rectal meds was that the medication I'm on targets the entire colon. He said he would prescribe the meds rectally if just that first part were involved. So now I also know that the biopsies taken during my colonoscopy showed active UC throughout the whole colon. (I will point this out to my GP the next time I see him since he was incorrect)

My GI has only prescribed LDN to one person and it didn't help them, so his experience of N=1 was negative. He admitedly said he doesn't know much about it but was reluctant to go there because I'm responding well to a standard, safe treatment.

He said it was common to have looser bowel movements for women during their period, so if I was having only 2-3 soft stools a day otherwise, that's OK.

I also told him I had made inquiries to enter a fecal transplant study here in Canada but I haddecided against persuing (just to emphasize that I was looking into alternatives and he told me that there's plenty of time for me to let the studies figure out if it's a good treatment or not

He was supportive of the probiotics if I wanted to take them. I asked him if he was at all excited in all the research being done on gut bacteria. He said it certainly seemed to be the way that the research was going. Regardless of what he says, what I eat makes a difference and I'm going to continue with being gluten free and experiment further with diet...GAPS, or SCD, or FODMAPS or nightshades

I'm OK for now with his answers I guess. A big Leave Well Enough Alone.

I go back in three months

Thanks for pointing that out Judy, I guess he at least listened to me and gave me his reasons for not recommending what I was asking for. AND supported ("it's at least not going to hurt you to go and get some yogurt from the grocery store and eat it") my taking proiotics. I think he is more defeated than anything and that is probably because he doesn't think diet has a thing to do with this disease.

I wanted to ask him if he ever spent time reading anything on this forum!