Medications working too well?

[jfb115]

Hello,

I was wondering if anyone had any advice to offer...

I have UC and was taking Lialda (4 pills/day), Sandimmune (Cyclosporine) 225 mg 2x/day, and 6-MP (50 mg/day). Everything seemed to be getting better, I wasn't running to the bathroom as much, but then a couple weeks ago I started getting very bad stomach cramps at night. Since I take the Lialda and 6-MP at night, and the cyclosporine both in the morning and night, my doctor thought it was most likely caused by the Lialda. I had been on Lialda since I was diagnosed (almost 2 years ago) and he told me to just stop taking it, I wasn't weaned off it or anything. Since then, (it's been about 2 weeks now) I have had a lot of trouble going to the bathroom, I'm going maybe once every couple days. My doctor says that it's not from going off the Lialda, but it seems to be too much of a coincidence. I'm very careful with what I eat, and because my bloodwork is indicating there is still some inflammation, he told me not to eat too much fiber/roughage because it could interrupt the healing.
He has had me do enemas, told me to try some miralax, but I don't understand why he isn't lowering the dose of the cyclosporine, which seems like the logical thing to do - laxatives cannot be the only solution.
My doctor is supposed to be one of the best in NY, and I like him but I have a hard time getting a hold of him, and I have to come in for an office visit every time I wan to actually speak to him (otherwise messages are relayed through his secretaries, who are some of the rudest people I have met in NY). I have an appointment set up, but I wanted to see if anybody out there has any ideas.
I'm also just really sick of this, I know some people have been dealing with flare-ups for longer than I have, but it's been one medication after another for the last 2 years and every couple months when they don't see results, they just try another one. I get that a lot of this is trial and error, but the cyclosporine seems to have finally been the one medication to get things under control. But is it working too well and should be lowered? Or is this from the Lialda? Or should I incorporate more fiber into my diet?

Any advice would be appreciated!!

Thanks!

 

[Rebecca85]

It sounds like you are on your way to remission. So why would you lower the dose of the medication that's going to get you there? Yes, it might be easier to go to the toilet, but for the wrong reasons- lowering the dose might mean you have some mild inflammation left, which in the long run can scar and cause more problems. I expect the main reason you are constipated is because you are no longer suffering from diarrhoea, but are not yet ready to add fibre to your diet. I would try and stick it out a bit longer, and hopefully you will soon be in remission and can start adding fibre. In the meantime, drink plenty of water as this can help loosen your stools. But if you're only going to the toilet every few days, accept it (believe it or not, going every 3 days is still in the 'normal' range) and don't keep straining to go.

 

[littlemissh]

I would agree with Rebecca. Try increasing your fluid intake. Micralax enemas are quite gentle if you have to use them but going every other day is as rebecca said normal for many.

 

[jfb115]

Thanks, I guess I'm so used to running to the bathroom 8 times a day that this feels weird to me!

 

[littlemissh]

Tis a pleasure.