not much progress lately

[harma]

another thing I just would like some comment/advice on. I am on the diet for 5 months now (you know soy, gluten and whatever free). With the D that goes very well, but mostly thanks to the medications. Most of the time I am free of any pain and have normal BM in frequency. My BM's are solid small pieces. I am convinced If I quite the medication now the D will be back in days (maybe hours). It is just I haven't seen any improvement in weeks. I am just impatience? Overall, when I read messages of others I may not complain at all, I am on a very low dose of entocort (well budenofalk), only mild side effect (after 20 years the acne is back). As long as I follow my very strict diet, it goes okay. But as soon as I start to experiment with it, it goes wrong. No D, but the restless bowels that drives my greasy. I have tried to make my food a bit more tasteful with herbs and spices, wrong idea. A bit more fruit than two a day, bad idea. Nuts, forget it. Almond milk, also a no and cost me a night sleep. Is this normal that it takes so long to see progress in things you can eat?

Also I still have my good and bad days. I am talking about fatigue than. Quite often I cancel parties at the last moment. I was dead yesterday evening and in bed by 9.30. Today I was fine again. This makes is sometimes so difficult to plan things. So often I cancel something at the last moment. It is more "head" tiredness than "body" tiredness. I could walk for an hour (if I really needed too), but going to the kitchen make a cup of tea is to much of an effort. Is this also part of MC? And how long does it takes before this gets really better. And is it normal after about 4 to 6 months you have a feeling you are sticking to a certain point, it does not get worse, but also not better.

I also have some very positive news. The week before last week, I had two days, feeling 100% great again, like the old me, before I got ill last year. Full of energy, open to people, enjoying life. But it only lasted two days. But at least is was there again.

[Gabes-Apg]

Harma
i am very similar, i think the head fatigue is our bodies protecting us.

we use alot of mental and emotional energy managing this demon (poop watching is quite exhausting!)
I have said before that i feel like my body can not keep up with what my mind wants to do.

and yes the bland, not very many ingredient diet is a stark contrast to my eating plan pre-mc
i am now going into my 4th week of eating the same thing every day, all week.
I am slowly re-educating myself that variety is not needed. and experimenting with new ingredients is fraught with danger.
i am slowly losing my experimenting nature and and happy to stick to bland for the benefit of having energy and being able to manage the D

similar to you I have found if I have too many meds i get a bit constipated and do the small solid 'possom poo' no meds and have soft motions 6 times per day and cramping pain

I had a day of feeling like Gabes pre MC, last week. It took me 2 days to recover!!
you appreciate those type of days soo much more, it is like we have a greater appreciation of life

big hugs harma

[JoAnn]

Hi Harma, your description sounds so much like me. I even reached remission last fall but had a bad flare in Dec. which really set me back physically and emotionally. That's why I'm taking it so slow now. I felt like you that I had followed the diet for months and felt like more healing should have happened. I also relate to your social feelings. It is so hard to plan ahead because you never know if it's going to be one of your "up" days or one of your totally worn out days. I found out Friday that I have been selected for an award in my profession of education and that I am to attend a banquet on May 12 to receive the award. I was so surprised and overwhelmed at the news and felt very happy, and then the cloud of mc hovered over me worrying about the food that will be served and will I feel well that day. I really think I'm better than I give myself credit for. It's become a habit to worry about events and how I will handle them and I really need to work on that. I feel like you that I am basically doing well but am not quite there. I'm still hanging onto 1 entocort until I get through a few things in the next few months. I have also had days where I felt like the old me had returned and I realized how much I miss her. Your ups and downs sound just like mine. I'm glad we have each other on this board to share these feelings with and know we are not alone. Thanks for sharing yours, Love JoAnn

[tex]

It took me over a year and a half, before I stopped getting sick regularly, but I thought that I was just unusual. As Polly always points out - the brain fog is the last symptom to go away.

Tex

[Gabes-Apg]

Ohh the relief (and it feels like a warm hug) to find out that i am 'normal' and quite a few of us have symptoms of brain fog and the ups and down

[grannyh]

Having spent three years trapped near the bathroom in my home.. I tried all kinds of things... some worked for awhile but there were always flares. I have no intention of stopping entocort ec.. since I am only absorbing 10% or less of 3-9 mg.. I am not worried about long term effects... but then I am old...LOL For over a year I take only 1 a day.. unless I have a problem..then take two a day for a few days.

This site provides the only place in the world where people understand what you are going through... and you are encouraged along the way. When you find your solution.. no one will tell you .. it is the wrong solution... we all have to find our own way... and the rest of the group celebrates your success with you no matter how you find it!
grannyh

[Stanz]

Harma,

You've gotten some great feedback here and I'm sorry you are still struggling so much with this. What you describe sounds very similar to depression. Maybe this is just a combination of frustration and impatience with your not feeling "normal" and I can definitely relate to that.

We can focus on us only so long before us becomes boring, and doing all the positive feedback things people recommend often seem to be just silly and pointless. At this point in my life, it is my granddaughter and my wish for her to learn and grow and be happy, that feeds my soul.

Connie