Thoreau- question

Hey Thoreau you still trying scd?

Haha that is possible!! I was hoping to do that with imuran lol 😭

Hey Chrissy,

SCD did not last long for me. Eliminating all the grains and such was brutal on me. I had lost 5+ pounds in two weeks, and the foods I was "allowed" to eat weren't all well tolerated.

For me, any significant portion of nuts or trail mix type thing makes my guts act up. I bought a nut/seed cluster mix, as well as a bag of prunes from Costco for a snack while working in the last couple weeks. I tolerated a few now and then just fine. BUT, one day I didn't eat lunch and ate more of those than normal... and oh man... I was using the toilet every half hour even in full remission.

I am for the most part eating what I want while on Remicade. I have still stayed away from straight milk for the most part though, as it will cause my guts to act up if I drink a certain amount. I can handle some ice creams, but not certain cheap versions.

The year I spent trying things (2011) I got my diet down to where I didn't eat sugar hardly ever, except for the little bit added to foods like normal peanut butter.

I wish I had some great answers for you. I swear some days even before Remicade I would give in and eat not as high quality food, and actually feel better the next day. It's very difficult to predict how the disease will react.

I am going to be skipping my next Remicade dose to see if my body aches and joint pains go away. I'll be honing my diet back down to a simpler, less sugary diet in the next few weeks in hopes I can avoid a flare-up.

How long have you been on Imuran??

Oh man... :(

I'm sorry to hear that, Chrissy.

In my personal experience I don't think switching to the SCD in the middle of a flare is necessarily smart. Before Remicade I always thought I could somehow manage the disease with being calm, or taking probiotics, or resting a bunch (usually while concurrently on some UC medicine)... but the disease always had a mind of its own. The flare that pushed me into Remicade was brutal. It came about fast, and within ten days I was in a tremendous amount of pain and bleeding badly. I had always chosen to avoid Remicade due to the risks of cancer and infection, but when I got to a point I couldn't go to work I knew I had to do something. Remicade became the easy choice then.

I want so badly for there to be an answer to IBD. There has to be a cause, and we are dealing with the effect. I want us to see the natural progression in a person, and know how to interfere with that damaging set of events in order to maintain health.

If you have not tried the biologics and have failed everything else up to them, I would recommend them. If you are hesitant or resistant to them I totally get it. I avoided Remi for three years while the doctor was wanting me on it. Now that I'm on it though, I have a life.

I got on Remi in January 2012. That year I was able to work more and really made a great income which helped me get into rental properties. (I was always wanting to get into rentals, but flares kept me from it) I was also able to date much more easily and confidently. No surprise, I then met my wife fall of 2012. In 2013 I bought two rental properties and got that business going. This year I was able to take responsibility for the business my dad and I owned, and manage to sell it successfully in order to protect my dad's health, as well as my own to some degree. All of these things took an amount of reliability in my body that I hadn't experienced since about 2002.

Anyways... if you like movies or tv shows netflix was always good to watch in a flare when I was just resting inside on the bed.

Feel better. :)

There is hope, don't worry. :)

You have all of the anti-TNF drugs to try. These helped me be in complete remission... which I really never felt I was in before for any extended period of time.

Then there is still Entyvio... which has a different mechanism of action than the anti-TNF's.

If all else fails, surgery is always an option. I'm one of the stubborn ones who has this undying faith that better options will keep coming out for us still with our colons. However, often times I think how great life would be if I were just plain done with UC. Get the colon out, free up about a gazillion hours of dealing with UC related things, and enjoy peace of mind.

If you follow my posts much you'll see that I still have issues with bad pains. I'm almost 100% positive these are from Remicade. But, I wouldn't worry about them too much... none of the GI doctors at my doctor's big clinic have ever had anyone else with these pains... nor any of the rheumatologists in the clinic I went to... who deal with Remicade A LOT. Without the pains honestly Remicade would be a miracle drug for me. It really is amazing.

I think it's great you have hope lol. I personally feel doomed by UC most the time. Tell you one thing, I wish I never read the scd diet book. It put this thing in my mind that it is the only treatment that would work, been giving me anxiety ever since!