That's a bummer, Spooky. Are biologics an option?

I really don't think I want to go that route yet. I don't even really have an explanation for the symptoms I'm having.

Yes, the point of medication is to improve your symptoms, not make them worse or give you new ones. Unfortunately for you, it does sound like you are intolerant of mesalamine.

Other disease modifiers like Imuran or methotrexate are a possible option (for a variety of autoimmune diseases, not just IBD). And of course, there are steroids and biologics. Biologics are actually safer long term than prednisone, but nothing is without risk (including no treatment!).

Jan

It would help a lot if we knew what I was being treated for. That's kind of half the problem right now. At this point, since this has been going on for a while, I'm not willing to start pumping tons of drugs into my system with a "well let's see if this works" approach. We've tried that with antibiotics, enemas, and now suppositories and clearly there hasn't been improvement with any of them. I wouldn't be opposed to a short course of Entocort or Cortifoam, but I'd have to draw the line at prednisone or biologics unless somebody can offer me a real explanation as to why I would need them. I mean, you wouldn't give chemo to somebody unless you were sure they had cancer. That's the way I feel about some of these drugs.

Of course, I do realize that I might just be becoming a difficult patient, like Elaine on Seinfeld.

I suppose it all depends on how bothered you are by your symptoms and motivated to treat them.

In my case (enteroathic arthritis), I was willing to entertain pretty much anything. My symptoms had been brewing for decades, but got to the point of really interferring with my daily life for about a year before I was grateful to be offered biologics. Before that, I was happily taking NSAIDs like candy until liver side effects derailed that option. The good news for me was that the biologics helped both the arthritis and the cuffitis, a two-fer!

So, no two cases are alike. I hope you get your mystery sorted out soon.

Jan

Yes, if the cure is worse than the disease, you do have to weight the pros and cons. In your case, definitely, you benefited from killing two birds with one stone!

Most of the time, my symptoms are tolerable. In fact, many days I do feel almost "normal." I can generally function. I can go 2,3 weeks without significant issue, then have a a few days of bleeding on and off. Overall, stools and frequency have been variable. Some days they are formed, other days quite watery, but I'm still going about 6-10 times per day and once at night so there has been no massive increase in frequency. It's mostly been the bleeding that has been the concern as my hemoglobin has dropped, but it seems to have stabilized at about 10-11 (down from 14). The good news is that it hasn't gotten lower. However, it's the unknowns that are the big issue - as I mentioned earlier, it's the fact that we don't know what we're dealing with. It's at the back of my mind that the other shoe could drop at any time, and that is probably what I'm finding most worrisome about all of this. But I know that compared to a lot of people here (and based on my GI's reaction) even with these issues, I still have a very "good," functional pouch.

That being said, if I actually received a diagnosis or figured out what the problem was, and biologics made sense to treat it, then I would definitely go that route.

You *are* supplementing iron, right? You always need iron supplementation if you're bleeding chronically. The iron/vitamin C combos (e.g. Vitron C) seem to be better absorbed.

Yes, I am taking iron. I've actually been taking it for a number of years, but I've increased the dosage since my hemoglobin dropped.

Just be sure to take it with Vitamin C or acid foods (like orange juice) to enhance absorption. iron salts are nowhere as bioavailable as heme iron (iron associated with blood- like meats).

Jan

Spooky, welcome to the club!

Two of my pancreatitis attacks were due to pentasa and mesalamine. Both share some ingredients and have a small chance of causing pancreatitis. I triggered on both.

Sorry you're in the club, though.