Community Forum

Today is a hard day.
This is day 3 of yet another flare. I'm so tired of doing all the "right" things and still getting flares. I'm tired of eating SCD for months only to find out that Almond Flour triggers my flare...then starting over. I'm tired of losing weight so much so that my husband looks at me with concern in his eyes. I'm tired of not being able to have my loved morning cup of coffee. I'm tired of having to tell my little girl not to hug too tight because "mommy's tummy hurts today". Does this ever get any easier?

I found out I had UC a year ago, got hospitalized for a bacterial infection that led to complications with my UC and landed me in the hospital for 6 weeks. No food or water for most of that time. I was on a feeding tube and TPN and had 5 blood transfusions and lost about 30 lbs. In the end of high doses of prednisone, 2 treatments of Remicaid (within 2 weeks), and countless doctors probing, scanning and bringing multiple students to see me since I was a "difficult IBD case", I ended up having my entire colon removed. The surgeon stated that there was no way it could have been saved; damage too irreversible.  I recently was told I now have Crohn's too. I feel so frustrated with trying to eat healthy and limiting my diet to heal  myself only to have set backs like this time and time again. My husband is frustrated by supporting me and only seeing me suffer and lose more weight.

I am feeling quite alone in my struggle and wish there was an answer to all of this. I am petrified of the drugs my doctor wants to put me on. Right now I am only on Entocort but they want to put me on MP6. I am 45 years old and have a 2 year old daughter. I don't want to be on medication for the rest of my life and want to fix my body; not mask the symptoms. Is there ANYONE else out there who feels the same? Am I the only one who thinks this disease can be fixed with diet alone? Can anyone hear me!?!?

 Reply posted for mrsgali.

Hi there! I'm so sorry to hear your frustration and we can totally sympathize. If you are looking into alternative treatments, please look into Dr. schulze formula 2. When I was diagnosed in 2013, nothing would help until a relative recommended it to me. It is a formula aimed at treating colitis and curing it. Unfortunately I am not disciplined enough to run the whole program, but when I do start to do the regimen I have had incredible turn arounds not only in my flare but general health (skin, energy, mood). Best of luck to you and your family!

 Reply posted for momof2girls.

what's it like flaring with young children in the house?

do they worry about mommy?

I don't have kids yet but I really want to and this is a major concern for me.

 Reply posted for momof2girls.

what's it like flaring with young children in the house?

do they worry about mommy?

I don't have kids yet but I really want to and this is a major concern for me.

 Reply posted for stevewars.

I am so sorry for your suffering! I am not as sick as you, but I know how awful it can be. I am also a mom of small children, and I work full time. It is very isolating to have this horrible condition. I personally feel there is a strong nutrition component, although many GI docs seem to find it controversial. When I was diagnosed 10 years ago, my first flare lasted 6 mos. IT was the pits, as I was in the bathroom 10x/day, having accidents, etc all while working.I was constnatly scoping out the bathrooms wherever I went, not knowing when it would strike. Not only does it take a physical toll, but such an emotional toll as well.And it isn't something I ever felt I could talk about with people.  I wish I could give you a big hug!

I was lucky, and my UC was "moderate," so I didn't take the heavy duty drugs, just rowasa and asacol, colazol. None of those darn drugs seemed to help, and they made me feel so sick! I was ready to try anything else that might help. I did SCD diet, and it seemed to help, but I felt terrible while on it (constantly hungry and low energy). I also saw a nutritionist, who gave me some anti inflammatory herbal supplements (you would want to check with your doctors to see if that would be okay). I felt that really helped too.I also strongly feel that when you have this condition, you need strong emotional support. I worked hard to calm my nerves and relax, and I feel it helped strengthen my immune system. I listened to meditation CDs, took short walks, and tried to find comfort in talking to close friends who were supportive. I was lucky and had remission for 3 years before the next flare, and another 7 years until the next. Now I am flaring again. I wish I had more answers for you. I just wanted to let you know you are not alone. I also really feel diet and stress play a huge role in healing. It is also obviously genetic...as I have a relative with the same condition. Sending healing thoughts...don't give up hope.

 Reply posted for hhainsey.

Though my symptoms are not as bad as what it sounds like you are going through I totally understand. I've been trying all sorts of diets most recently SCD and I still don't feel better. It has been really hard sticking to the diet and even harder considering it doesn't seem to be helping. I too desire to live drug free. I know others have done it and so I am feeling optimistic. I don't follow this advice enough myself but stay positive.