Sensitive to mesalamine! What now?

My GI and I thought we'd finally found a mesalamine formulation that would work to control my symptoms - Lialda - but it turns out I have a sensitivity! So far, I've tried Asacol, Lialda, Canasa and Rowasa. At first, things always start out great. However, as time goes on, I start to develop urgency, then bleeding, then even greater urgency and frequency until symptoms are as bad as the disease itself. We tried reducing the dose of Lialda from 4 a day to 2 a day - which did not help. We then tried splitting up the doses throughout the day - which didn't help, either. Finally, we tried discontinuing the medication altogether, which resolved most of my symptoms within 3 days. However, I still have rectal bleeding.

My colonoscopy in January revealed active inflammation in only the last inch of my rectum. Everything else looks great. (I have pancolitis, so this is great news!) However, I'm at my wits' end trying to resolve this stubborn proctitis. Right now, I have a two week supply of cortifoam, which we hope will help resolve this. However, my GI is not a fan of long-term steroid use, even in topical form.

Does anyone have any ideas for resolving this? I strictly follow the SCD, which helps greatly for the rest of my colon, but has not been able to resolve my issues with proctitis. Stupid proctitis! Auggg!

Thank you for reading this! I appreciate any ideas you might have!

I have tried sulfasalazine - had a reaction similar to mesalamine. Helped at first, then developed increasing sensitivity the longer I took it. I have also tried prednisone and Remicade. I haven't explored Humira or Colazal. Thank you for the suggestions! :)

Writergirl, that is a tough situation. I understand your DR's concern about topical steroids - with long term use they thin the tissue and that may be as much of a problem as the inflammation.

I'm stumped, personally. I wonder if you would be intolerant of the salicylates in a more natural form, like willow bark? Just grabbing at straws here. There are some folks on the forum who are really well-versed in herbal remedies.

Did you try apriso? Its mesalamine also

Humira should definitely not be your next step. It's a very serious medication (in case you didn't know it's in fact an injection, not a pill).

After 5-ASAs you should think about immune suppressants (6MP/Imuran).

But are you positive you don't tolerate mesalamines? Sulfa is not a mesalamine so you shouldn't have the same side effects. Maybe it's just UC and you just think it's the meds

There are some folks on the forum who are really well-versed in herbal remedies

I cannot tolerate mesalamines either. But in my case it is almost a blessing in disguise because my IBD can be controlled with natural supplements without the side effects from meds. Government sponsored research shows that it can indeed work for some people.

I take a variety of supplements but my mainstay is powdered psyllium seed and prescription VSL#3DS probiotics. But supplements aren't very effective for me unless I also monitor my diet, not with the standard SCD but a food diary that told me that I must restrict food triggers like gluten and certain vegetables.

Below is a link to some government research. Besides supplements another drug many have found to help with IBD is LDN. I don't know what to tell you if LDN and natural supplements with diet modification are ineffective for you. I guess you would have to graduate to the "big gun" meds?

www.healingwell.com/community/default.aspx?f=38&m=2204683

www.ncbi.nlm.nih.gov/pubmed/10022641
CONCLUSIONS:
Plantago ovata seeds (dietary fiber from psyllium seed) might be as effective as mesalamine to maintain remission in ulcerative colitis.

You guys are awesome! Thank you!