Anyone mesalamine intolerant? How did you know?

I've posted several times about problems between conflicting test results and symptoms. After having been initially diagnosed with left-sided UC, my inflammation has mostly resolved according to my colonoscopies and bloodwork. My gastroenterologist now describes it as "mild proctitis" and says that my test results indicate I'm in remission.
My symptoms are still very severe. Frequency, urgency, pain, nausea, etc... My doctor keeps suggesting IBS, but I've tried every diet out there, seen a nutritionist, a psychiatrist, and a therapist, and I never seem to have better days. It's consistently bad regardless of what I eat or my stress level. I'm starting to wonder if I'm mesalamine intolerant. I'm allergic to sulfa drugs, so sulfasalazine is out of the question.

Has anyone else had a bad reaction to mesalamine? How did you know you were intolerant? What did you take instead?

First, I'd say that if you have "mild proctitus", I don't know any way that your doctor can say that you are in remission. When you ask about mesalamine intolerance, are you asking about Colazol, Canasa, or both? Usually if you are mesalamine intolerant it will make you worse. Have they ever made your symptoms better? Of course sometimes you can build up an intolerance to them after they had originally worked. Since you are in "remission" my suggestion would be to just plain drop both the Colazol and Canasa cold turkey for about five days and see what happens. If you get better then I would say you were intolerant to at least one of them. If you were to get even worse I would immediately pick back up on them and then I would say you have proven that you were not intolerant to them. If you are able to I would personally recommend paying American Gut or Ubiome $100 to analyze a stool sample. It might point out a valuable clue. That's a small price to pay considering all the bucks you've probably laid out already for this disease and the results could be astronomically helpful, compared to your worthless doctor. While you could have IBS that does not respond to diet, it is a scapegoat diagnosis and it is my belief that you have something else going on, hence my suggestion to get your stool analyzed - and not by the doctors.

I tried Colazal or Asacol on three separate occasions before wheezing and severe flu-like symptoms forced me to discontinue after 2-3 days.

ipoop said...
What's available to you is immunosuppressive medications (Imuran, aza, or 6mp), and biologics (remicade, simponi, humira, and entvyio).

Or you can try what I did and go the natural route. It doesn't work for everyone but it worked with me. Look up our threads on diet modification, boswellia, plantago, certain probiotics, fish oil, and curcumin which have all been proven in research published by NIH's PubMed to be just as effective at maintaining remission as the mesalamine drugs.

I knew I was intolerant after trying Canasa suppositories and immediately getting worse, much worse. It's weird that I was also tried Lialda and Apriso and didn't have such a strong reaction. For those, it was a small worsening of symptoms so I and the doctor assumed it was the UC getting worse on its own.

That's what makes it so difficult to figure out intolerances. I agree with the others that you should try dropping your mesalamines meds for 2-3 days. If that's the problem, you'll see a change quickly.

I am another person who is able to manage my UC with supplements. In my case, large doses of curcumin. I don't believe the same treatment will work for everyone but it is worth researching. If you look into curcumin, it's important to get a reputable brand and take at least 2 or 3 GRAMS per day. I don't think it can act as a maintenance drug in lower doses.

I wish I were able to take mesalamines.

I had a pretty extreme reaction to mesalazines: a drastic worsening of symptoms overnight. Basically all the symptoms of a severe flare-up in the days when I had no idea what a severe flare-up felt like. I'm still pissed off 10 years later that no IBD nurse or doctor I spoke to about it seemed in the least bit interested: all they did was try yet another uttterly pointless form of mesalazine. I went without treatment for 5 years in effect, during which time my disease got a foothold and turned severe almost overnight.

I really, really, really hate that first hospital I was at.

If nothing else I hope you've learned that you have to figure out a lot of stuff on your own, no matter how good your doctor is supposed to be. Don't take anything for granted. I don't trust any doctor to handle autoimmune diseases, even the specialists. These are diseases with no known cause and no known cure, so what the heck can they possibly know? I had to figure out for myself how to put my first autoimmune disease in remission so I knew right away when I came down with UC that even though my GI is one of the most highly recommended ones in my area, I was going to have to do a lot of figuring things out for myself and that's one of the reasons I'm doing as well as I am. Hope you continue getting better and figuring these things out for yourself instead of just assuming the doctor knows what he is doing.

kiptyn said...
I'm glad you're feeling better. You've been through hell. I wish I'd have posted about my experience with Canasa before but I didn't think about that detail until I read your posting.

I've found that some of the "best" GIs aren't always great with patient care. They're too busy -because everyone wants to see them-and they themselves think they're pretty much infallible. I had a bad experience with two well-known GIs, one of which landed me in the hospital. Then I found a lesser-known GI that listens, doesn't rush appointments, and even takes my success with curcumin seriously.

I should have put together the Canasa connection earlier. I knew Lialda made me much worse overnight and that Asacol didn't seem to have any benefit, but I'd been flaring so hard for so long that even being able to tolerate Colazol (probably because it's balsalazide and breaks down more easily) at all seemed like an improvement. I stopped bleeding as much, and even though I was running to the bathroom constantly, my doctor just kept calling it "stress-related IBS" and insisting I'm in remission. Of course, all of my stress is caused by my symptoms. I'm pretty sure he's got "hysterical woman" written on a chart somewhere.

I think you're right. If he's not receptive to the mesalamine intolerance news, I'm switching again.

I can see dropping everything for one week and regroup but one month seems excessive.