Help please, encouragement needed

[Guest guest]

Hi all,

I've been reading the posts but have been keeping quiet. What I thought

initially was " the " three month flare has turned into a three month plus flare

that is getting worse. I am trying to be positive, but it's getting very hard,

and I just need to vent and get some words of encouragement if anyone has any.

Background info- I was on Remicade for Crohn's but it stopped working, so I have

switched to Humira. I've been strict on the diet since March and I was somewhat

flaring a little before the three month mark, but it was not too bad, just

occasional low grade fevers and issues with D. Well, since I hadn't had my

period in almost a year, my gynecologist wanted me to try a month of birth

control, which I was hesitant about but finally decided to. About a week into

the pills I started to get worse, more fevers, worse D and more bathroom trips.

Then last week when I started the Humira, I got even worse, higher fevers now

(101.4), lots of D, lots of nocturnal BMs. I finally caved and asked to be put

back on Prednisone- yes, that bad, but I want to stay out of the hospital,

otherwise I don't think I could stick to the diet.

So now, here I am on 3 meds- Humira, Methotrexate & Prednisone, PLUS the diet

and I still am not feeling like I'm getting anywhere. I can't sleep because

of the Prednisone, which is making me absolutely exhausted and amplifying every

emotion that I have, and now I'm really worried I'm one of the people that the

diet isn't going to work for. I know it's not a linear process, and I guess that

one slight improvement would be that my fevers aren't as high as they usually

are (they get up to 103), but I think if I didn't get back on the Prednisone,

soon they would get back up there. My trips to the bathroom are the most they've

ever been, and I feel like I go mostly at night, which just exacerbates my not

sleeping and exhaustion.

I will be honest when I say that I did not follow the stages, I just ate what

was legal. I seemed to tolerate most things, but then my flares get worse and

then honestly I feel like no matter what I eat my symptoms are bad. Will I still

heal if I don't follow the stages?

Also, I get confused, because I don't know if I need to go low carb or not. I

thought the premise of the diet is the type of carb and not necessarily low

carb. I can do low carb for a while, but I find it hard to go extremely low carb

for long periods of time, and I'm worried about it messing up my thyroid (which

I've read that long periods of low carb without carb refeeds can).

So I guess I just want some reassurance that you think the diet still may work

for me, despite my being on it for this long plus meds and getting worse. Do you

think I'm a hopeless case? I'm so saddened right now, I feel like I do all that

I can within my power to help my disease- follow the diet, take my meds, rest,

exercise etc., and yet I just get worse. I don't really know what else I can do,

and I originally got on the diet in the hopes of getting off my meds. Now my

standards are so low that I just stick with the diet to hopefully stave off a

hospital stay.

Sorry I'm such a bummer, but I don't know what to do. Do you think it was

possibly the birth control that made things worse, and if so, how do I make it

better? Or do you think I'm just one of the cases that the diet doesn't work

for?

Thanks for listening,

Amber