Newbie sharing story

[Tiredjen]

Hello all! When I read "happiness is a dry fart" I knew I had come to the right place. I've been lurking around an ulcerative colitis forum while waiting for my official diagnosis, and an older post there led me to you guys.

I saw my GI on Monday and he confirmed I have microscopic colitis as per a scope and biopsies done the week after Christmas. I'm so pleased to have a diagnosis.

Brief history: about 10 years ago I started having muscle pain, stiff connective tissue ESP in am and strange skin pain. I saw a neurologist- negative for MS, eventually I saw a rheumatologist, who kept calling me "interesting.". He eventually sent me to a geneticist who's tests were negative. Then on Halloween I had an emergency appendectomy, and was in the hospital for a couple of days because my white cell count was too high. Then 15 days after surgery I developed a fever and horrible abdominal pain and was readmitted to the hospital. I quickly developed bloody D and tested neg for c diff. It took 13 days to get me well enough to return home. I saw a GI two weeks later and here I am.

I've been following the SCD diet with a lot of success and have been on Asacol for about 3weeks. The GI wants to wean me off the Asacol by the end of summer and I hope I can stay healthy on this diet. It eliminates gluten, soy, lactose and refined sugar. How long should I wait before trying to add these things back yo see what my intolorances are? According to the SCD diet I should wait a year, but I'm impatient.

[tex]

Hi jen,

Welcome to our internet family. Regarding that old thread, with this disease, sometimes we have to laugh, to keep from crying.

Since MC does not involve passing blood, (except for the many cases where it causes hemorrhoid issues), I am going to guess that they simply missed the C. diff when they did the culture test. It sometimes takes several cultures, before positive results can be detected.

Your neurological symptoms are almost surely due to gluten-sensitivity, and I can certainly relate to that, since I have a significant amount of peripheral neuropathy and other issues, connected with residual gluten damage. Skin issues, and various other autoimmune issues are very common among those of us with MC.

The only thing wrong with the SCD is the fact that it allows casein, (milk protein), and most of us are sensitive to casein, in addition to gluten, (though there are a few exceptions, of course). At least half of us, (or better), are sensitive to soy, and a few have various other sensitivities. Everyone with this disease is impatient to get on with their life, but trust me, the gut heals slowly. It takes at least a year, and probably 2 or 3 years, for most of us to heal, (of course, in some cases, some of the damage is permanent), but fortunately, we usually reach remission long before our intestines heal, (if we are diligent with our treatment).

Unless you are able to track down and eliminate all of your food sensitivities, be prepared for a relapse, if/when you taper off the Asacol treatment. Hopefully, you will be one of the lucky ones, with just a few food sensitivities. I was able to begin adding a few foods back into my diet about a year and a half after I reached remission, but of course, I would never be foolish enough to resume eating gluten, again.

Congratulations on your success with the SCD. That in itself is a good sign that you may not be sensitive to casein, so you may be home free, with dairy products, because once the gut begins to heal, lactose intolerance should no longer be a problem, (because production of the lactase enzyme should return to normal - provided that you produced normal levels of lactose before your enteritis began).

Again, welcome aboard, and please feel free to ask anything.

Tex

[Tiredjen]

Tex,

Thanks for the quick reply. It's hard to be patient. A lot of my cravings for the no- no's have passed. I should just be grateful that i'm not running to the potty 20 times a day anymore! I need to focus on the right things.

[harma]

Hi Jen, from the Netherlands. Wow, you are the first one I meet here that is already doing the SCD diet before finding this group. Most of us start afterwards. Well I hope you will achieve remission soon. Again Welcome and nice to meet you here.

harma

[Tiredjen]

Thanks for the welcome Harma. I discovered the SCD diet when I thought I might have Ulcerative Colitis. When things were at their worse and I couldn't leave the house I spent a lot of time online. It made since to me. I feel better in general on the diet si I shouldn't wine about getting off of it I suppose.

[MBombardier]

Welcome, Jen !!

[hoosier1]

Jen,

Welcome aboard. Good to see you are living the SCD diet. I was never able to remain fully compliant to it. I admire your conviction.

You have found a group of people who will be able to help you.

Regards,

Rich

[ant]

It's hard to be patient. A lot of my cravings for the no- no's have passed. I should just be grateful that i'm not running to the potty 20 times a day anymore! I need to focus on the right things.

Jen

So true! We all need The Patience Of Job with this very tricky condition/disease (or whatever it is).

Also, I have found many cravings go after time. I can even go into a bakery now and see chocolate croissants without feeling sad.

Wishing you all the best on your journey to remission, ant

[natythingycolbery]

to our little online family

[Linda in BC]

WELCOME to you Jen!

I love that "Happiness is a dry fart" quote too. Yes, staying on a restricted diet does get easier with time. I would give your gut a fair chunk of it to heal ( a few months at least) before experimenting with adding things back in. Has your D. stopped?

Linda

[Tiredjen]

Linda,

The d has stopped. I'm stll bloated sometimes and I should probably keep a better food diary to figure out the cause. I did cheat and eat birthday cake when a friend turned 50. I was very uncomfortable the next day... Just my body's friendly reminder that I'm not ready for my old favorite foods yet.

Sigh...