LDN help please

[Moe.]

Hi guys,
Been taking LDN since late November and been feel really good. Solid BM once to 2x a day, and pretty much the pain dissapeared as well. Could literally eat anything and have no food reaction or anything. From pizza to macdonalds.
Regardless I did my best to avoid take out.
During this period ive also been on 10mg of prednisone and 3mg of salofalk. Since attending a christmas bbq on christmas day I have been sick, as if it were a flare. I can not seem to stop going to the bathroom and have awful D. Tried Imodium and lomotil and doesnt work. My GP has put me on Flagyl aka mentrodizale as he believes i've caught some bug from the meat at the bbq. For the last four days ive been taking as prescriped and the D is still coming. On the packet it says that D can be a side effect, so I really don't know whats going. Does the body ever go into a flare when on LDN, ive been on the same amount of pred and saloflak the whole time. Ive even upped prednisone usage to no avail.

Currently I feel the following:
D
Stomach cramps
stomach gurgles (the kind when you get food poisoned)

I do not know if this is caused by the flagyl killing bacteria, but before i took flagyl the stool was always brown d, not its becoming green d. and I didnt even eat anything green. Sorry for the graphics.


Any advice. Cant see specialist until his back on the 31st. Really sucky way to start the new year. lomo

 

[my little penguin]

My current understanding is you can flare on any drug.
The maintence drugs just reduce the number of flares .
Can you call your Gi office on the 2nd??
Or earlier and talk to the oncall Gi covering the service.

 

[Moe.]

Unfortunately not back until 7th.
It doesnt feel like a flare. more like food poisining, but then again
this is my first time since diagnosis so it could be a flare.
Really random and annoying.

 

[Jmrogers4]

Moe,
Are you feeling any better? My son is also on LDN since July and he is not feeling as well as had been either, still not sure if it's a flare or a bug, stayed home from school yesterday, said his stomach hurt (not in the normal spot though) had urgent BM's and losing weight again. He has not had a flare since shortly after starting LDN (about 2-3 weeks into it). We have not called GI yet, put him back on strict diet and seeing how that goes.

 

[LittleChloe]

You can flare on Ldn. Chloe had a couple flares during the first 10 months she was on it. We treated the flares and stayed on Ldn and she's fine now. Make sure you didn't contract
C diff, they will probably check you for it. What other supplements do you take?

 

[Moe.]

Sorry been so sick.
I got c diff. They think don't have crohns but always had c diff. Misdiagnosed.
Ill have to wait and c but the c diff treatment is working. Can eat normal agai. And the flaring is calmed down heaps. Lots of gas and loose stools but no more water d.
Not taking other supplements ATM. Need to go in end of the month and check what I really have. Stopped LDN for the mean time

 

[Jmrogers4]

Hope it is just the c diff and you are back to feeling fabulous again. Keep us posted

 

[Moe.]

Thanks alot

 

[xmdmom]

Littlechloe
WHat did you treat the flares with while on ldn? How long has she been on LDN?
Thanks!

 

[Laura44]

Moe I started LDN in November as well and saw immediate results with no D and just overall feeling better (and sleeping). What mg are you on? started on 1.5 then to 3 mg and am supposed to start 4.5 mg on Monday. I have been taking several supplements as well and for the past 3 days have been very constipated (hurts and feels different than before with the pain right above my bum and cheeks)....unsure if it is due to sups, LDN or if there is an issue.

So now I am unsure if I start the new 4.5 mg dose...hmm I really do not want to stop the LDN because I do feel better (other than the constipation thing...lol).

Hope you are feeling better!

 

[Kev]

I''ll throw in my 2 cents worth. Since I started on LDN, the only times I've not felt rock solid was... either immediately after/during a bad cold, flu, whatever... that would wear me down enough.. that very mild flare would follow... like an extra BM, or softer stool, things like that ... such a small hiccup that one would almost not notice it (at first, I was scared that LDN would suddenly stop working, so I tended to take note of every little bump in the road... as the years passed.. and LDN kept working... my confidence level grew so that IF I don't feel 100% on any given day, I don't hit the panic button). The only other times when I had any increase in Crohns symptoms was from aging pills. If I get into pills that are approaching or past their best before dates, my symptoms do increase. Slowly, but noticeably. But, given a fresh batch, things go right back to being good as gold within 1-2 days. Over the past 5 years, none of these minor flares have been of such an extent that I have even missed one day of work. I hope that puts it in perspective. Of course, everyone and every case is different. I can't guarantee that everyone will experience the same or similar results on LDN. But here's hoping...

 

[LittleChloe]

Littlechloe
WHat did you treat the flares with while on ldn? How long has she been on LDN?
Thanks!

A prednisone burst of 30 mgs for 5 days. The other flare she had was caused by c diff so she went on flagl. The c diff was her second bout with it so we took some aggressive steps to kill the spores off and she's been great ever since. Chloe started Ldn in October 2011, so just over a year.