Re: Joe/Back from Sisters Weddinge

[Guest guest]

Dear Mark, I am sorry to hear about what you are going through but am glad that you made it to your sister's wedding. I was in the similar situation (same diagnosis, same time frame) as you so I can sense how you feel. I restarted the SCD three times, and on the third time I followed the phases on the pecanbread site and made a note of how I reacted to everything (looks like dairy does not work for me, the SCD worked when I stopped the yogurt) - it took me about 6 months to see improvement and a year to see a reduction in the frequency of flares. About 6 months after that I reached "fairly normal" which to me still feels like a miracle. I was fortunate in this way, or I would have had the surgery by now - was all set to at that time, had met with my surgeon etc. I know that you might read to give the SCD a month and if you see an improvement, then it will work for you but I really feel that you have to give it longer than that as each person is different - also from reading about people's experiences, I get the sense that people with UC or Crohns affecting the colon, it takes a bit longer to note an initial difference, especially the more years you have been affected. If losing weight is the main reason you are going off it, have you tried baked almond butter goods? I was losing weight on SCD until 6 months in - I added almond butter cake with a lot of ripe bananas to my diet. I was not able to tolerate almond flour goods, but the almond butter was just fine. For one year, I didn't eat much more than the intro diet foods and that. Is the prednisilone not doing anything for you? Sometimes the vitamins are hard to tolerate if you are in a really bad flare so you might want to see how those are affecting you - I was not able to take them for the first 6 months. But I realize you need the calcium for the the prednisilone.

I suppose gaining weight is the number one priority if you need to have surgery and if you just continue to lose weight on SCD no matter what you try, then it's understandable you need to go off it. But I really hope you are able to find a way to gain weight on SCD. Also, I think it is great that you are planning to be on SCD after your surgery.

Best of luck,

Sheena

UC - 11 years

SCD - almost 3 years (tried to go off it, that didn't end well, so am still on it and happy to be!)

Re: JOE / BACK FROM SISTERS WEDDING

Posted by: "mark lambert" lambo042002@... lambo042002

Tue Jun 1, 2010 4:31 am (PDT)

Hi Joe, i have active chrons in the large bowel at the moment and im having the exact same problem as you as i have no control over the leakage as it just happens without any warning, it happens day and night and ive no control over it, I have diorreha all day and also a lot of the times i feel constipated during a bowel motion too. I too cant leave the house i sit in bed all day going back and forward to the bathroom.I'm just back from my sisters wedding which after the church we stayed in a hotel (about 30 min drive from home) for the weekend and it was very tough.

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Its now Tuesday morning and im not sure if i should stay scd or continue eating all foods to try get my weight up for surgery then when that is finished and i get out of hospital recover and get my weight back start the scd diet all over again which is what im going to do as i dont want my chrons returning like it can and will if i dont do the scd diet. Ive also got to accept that while in hospital the first few days after surgery im gonna be on a feed and some sort of food plan for few weeks until i get out and home which means im never gonna be able to do scd 100% plus the fact i have to take the fresubin drinks between now and surgery disrupts it too...Any thoughts,replies or if anyone wants to give out to me for going back on scd and thinking of going off it id greatly appreciate it as i value peoples opinions on this group and will take it all in good natureRegards MarkPrednisilone ( started 40 mg 19th April 2010, now on 20 mg tabs decreasing by 5mg each week)LDN (Started 3mg tabs may 1st 2010, due to increase to 4.5 mg tabs after 1 month)Freeda Multi vit tabsFreeda Calcium tabsDiognosed with chrons/UC 1998Started SCD bout 2 months ago The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy.