Day 3 med free

And feeling better! I have been on mesalamines for 3 years and have long suspected they were doing more harm then good. Apparently 3% of mesalamine users develop "acute intolerance syndrome" which symptoms are... Ulcerative colitis! Mentioned this to my doc and she gave the ok to stop meds (she said I am the first person to say that to, but since my body reacts so weird to meds she agreed to try). Has anyone else gotten better once they stopped mesalamine? I should mention I am still on a strict diet and various supplements, so I am still treating my uc, just not with pharmaceuticals.

I never thought I'd try this, reading too many stories of people going med free then flaring. But, well, Im already flaring, so I may as well follow my hunch that the mesalamines are making me worse. A few days ago I tried a mesalamine enema and then had major pain and bleeding, which made me more suspicious, especially since so many people on here say the enemas are the only thing that help. Why do I react to them so badly? Maybe I am one of these 3%:

"Mesalamine has been associated with an acute intolerance syndrome (3% of patients in clinical trials with mesalamine or sulfasalazine) that may be difficult to distinguish from an exacerbation of ulcerative colitis. Symptoms include cramping, acute abdominal pain and bloody diarrhea, and sometimes fever, headache, and rash. Observe patients closely for worsening of these symptoms while on treatment. If acute intolerance syndrome is suspected, promptly discontinue treatment with Lialda."

Ps. I will keep you posted how it goes! :)

Once diagnosed a little over three years ago they put me on Asacol. Not too long ago I decided to switch to Lialda, which seems to work better. Unfortunately, my new insurance won't cover Lialda so I will probably have to switch back to Asacol. Anyway, to answer your question, before starting these drugs I was having bloody diarrhea with mucus and no urgency probably 3 times per day. The meds got rid of the blood, diarrhea, and mucus but my frequency increased to about 6 - 10 times per day, some of those with extreme urgency. Lately I have been doing much better since a couple of quick rounds of pred and taking Canasa quite a bit. I am now about 4 - 6 times per day and the urgency has subsided a lot. I think there was a time there where I ran out of pills for a couple of days and I seemed to get worse so that gives me a huge fear of just dropping the meds completely. My stools are pretty much always formed but sometimes that is not a blessing when you poop out 4-6 solid BM's per day. Now I'm getting a hemmeroid issue.

I continue to take it but I know it does jack for me. The medical literature seems to indicate that certain probiotic strains are better than mesalamines for maintenance.

My only issue is that I'm having some real trouble getting some of the probiotics I want at the moment - mutaflor is crazy hard to obtain in the states. I'm going off it very soon once I get some things sorted out.

That's unfortunate it made things so much worse for you banana girl. You have had such a hard time with this disease! Harder even than the rest of us it seems :(
One thing for sure, number of bm's and urgency have gone way down today! I was 3-5 bloody bm's before. Now today I only had one bloodless bm this morning, and it was 3 hours after I woke up! Usually I wake up running to the loo! I have had a bit of pain in my colon area which is not normal though, but am hoping it is residual pain from the enema the other day.

I've been wanting to stop all medications for years. Please let us know what happens.

Pumping my body up from both ends with all of this Mesalamine crap has been a path to nowhere.

I've always suspected it is doing more harm than good.

I just want to live on one of those Star Trek planets where everyone is wearing robes and plant life is abundant.

I quit mesalamine a while back with the blessing of my GI. Not that it hurt me but it was obviously not helping me at all. I been med free for 2 weeks since I had to lay off humira and methotrexate. I'm in a flare but it has not gotten any worse. I kinda think the Humira is not going to work for me and the fact I have not gotten worse in these 2 weeks

scum1 said...
I quit mesalamine a while back with the blessing of my GI. Not that it hurt me but it was obviously not helping me at all. I been med free for 2 weeks since I had to lay off humira and methotrexate. I'm in a flare but it has not gotten any worse. I kinda think the Humira is not going to work for me and the fact I have not gotten worse in these 2 weeks

Have you tried any natural supplements or diet changes scum? Glad to hear you haven't gotten worse at least!


Last night I passed a bit of mucous but other than that only had the one bm throughout the whole day! Now I'm finishing day 4 and had another good day. Only 2 bm this morning, first with blood, second without. Loose still though. Pain in my colon has gone thankfully. This evening things have been happily quiet in my colon so far!

Im sorry things didnt work out for you with the meds nicecup. On the bright side, you get to be med-free now!

Quick update for those who are interested

Day 5:

Thought things were going great this morning as I had 2 bm both blood free. This evening things feel inflamed though in the rectal area, had 2 more loose bm. Still no blood but I dont like the increased evening activity. Ive been playing with resistant starches too but should maybe stop and stick to scd to keep things simple for now.

soystud said...
yup, I would try simplicity for a bit -

I think Im incapable of simplicity. Made some plantain muffins for lunch. I didnt want the plantains to go to waste! I thought, well, I can make them then freeze them. Then I had one... Ok, two.

On the bright side things were ok again this morning. Thought for sure Id be waking up to a bloody mess, but saw no blood and things were slightly more formed. We shall see, Im not gonna get to hopeful. Seems anytime I get my hopes up my butt jumps in to show me who is in charge, because it can!

I never really thought about my supplements making me worse, hmmmm. Although the ones I take though I take because I noticed a definite positive change on them (with the exception of boswelia, which I just started, though I was on it before my pregnancy and it helped then). I've never heard of turmeric making someone bleed. Interesting!

I havent seen blood in two days but this afternoon was feeling a familiar ache in my upper colon area that I havent felt since I was flaring badly so I got scared and broke down and took one sulfasalazine at 4:30. Things are quiet this evening in the gut. Around christmas time I was on only 3 sulfasalazine/day and things were really well for those few days until I gradually upped my dose to 6/day. Maybe I need just enough to keep things quiet but not enough to make my body reject the mesalamine content.

Ive had such a headache since cutting out meds, which is annoying I thought it was due to mesalamines and that it would go away once med-free, guess I was wrong!