10 months on SCD and MAJOR turning point

May 29, 2009

Hello all,

As with the trials and tribulations of managing Ulcerative Colitis and SCD I

would also like to report success to give others hope and perhaps some direction

to ponder. I am still on 5 mg of Prednisone, but I hope to be off of this soon,

but on a very slow taper...I am also coming out of another flare. My

relationship with food as well as dealing with my impatience and coping

mechanisms is changing - I think this has a lot to do with my success. About

three weeks ago I partook in more wine than I should, followed by introducing

some bok choy that was to much for my still sensitive gut that was already

reacting to the wine. The result was a milder flare - one that did not prompt

me to increase my Prednisone as my doctor would prescribe if I were to call him.

I contacted my SCD counselor and we went back to the basics (not eating after

6pm due to slower digestion and going back to basic foods (for me that is ground

beef, ground buffalo, yogurt, green beans and zucchini, Romano cheese and some

honey and very weak coffee in the morning). The very next day I was hungry in

the evening and feeling sorry for myself - I had started a period and I was

craving sugar something fierce. " I am sure some cooked up apples with honey and

cinnamon shouldn't hurt - hmmm maybe a little OJ in there to keep things moist, "

I thought and executed - the next day was horrible - I went form 4 BMS to 8BMs

and bleeding now. I could not report to her which of the items was the problem

because I had introduced all these new foods (OJ, apples, cinnamon), but she was

pretty certain fruit so late into the evening was not good, much less at 8:30 at

night due to slower digestion - she said to cut all of these out and now - due

to the bleeding, I should cut out my beloved coffee in the morning. Damned if I

did not do this to myself. I keep trying to push the envelope, but this disease

does not look the other way when I cheat. I stuck with my core foods and even

with these I found that I could not have too much banana (more than 1 banana a

day bad and if all at the same time bad - needed to split up throughout the day

for example) -from here I introduced some other things, like lemon...WOW - back

up to 10 BMS almost overnight and gas - cross that off the list for now. What I

am trying to say here is that the slow and mindful intro of fodds (for me every

couple of days is essential. Over the last ten months I have been tweaking

this, but I can asure you that this is not an overnight process. It was never

said to me this way (but it was in different ways that just did not clock for

me)but finding the core foods that one can have during a flare are essential,

this will take time to determine both in type AND in quantity per day and in

time. It will take experimentation and analysis of a food log, and there will

be variables like - coffee ok after D has subsided but not during - or Chedar ok

when D has subsided but on 1.4 of a cup tolerated so far. I also learned that

chicken, carrot sna spinach do not work for me right now and do not seem to work

for me when I am out of a flare, I have never tested positive for allergies for

any of these items so I may experiment with them when I am much much better

(i.e. flare free for months and off prednisone). Oh - that is the other thing -

another variable is the ole Prednisone - sneaky sneaky - major confusing

variable because at 10 mg I tolerated so much more of the above without trouble

and had trouble considering that a little 5 mg could make such a difference in

masking symptoms - don't rule this out. Also with Prednisone...I am going on

the faith of the SCD counselor with this one but since I have been on it for six

months now (mainly at lower doses of 10 mg or less) it creates it own problems

in healing. As I understand it, it is a miracle anti-inflammatory...at the same

time it is an immune suppressor in it's own right - especially after a longer

term course with the stuff. If I was not on Prednisone I may heal faster from

flares that what I am now (which this last one was three weeks - ones in the

past have been months) - I am hopeful and anxious (but will not be hurried) to

get off Prednisone for hope of even faster bounce backs if I am to introduce a

food that does not agree with me, or if I overindulge on something too much

(like wine - which I have to say is NOT the solution for coping on this diet

protocol - I do not think you can become an alcoholic on this diet thank

goodness) - I think my new forced coping mechanism is walks, exercise and

journalling - one thing for sure, the diet lifestyle forces me to have healthier

coping strategies. Happy 10 months to me - this " doubting " is starting

to finally feel some headway. I feel so empowered of my recent success getting

out of this latest flare - looking back on my prior food logs, I can see with

clarity major food offenders that I am sure contributed to me staying stuck in a

flare for months - it just had to tkae time and perseverance and STRONG

analysis. I am indebted to Shelia Trenholm, the SCD counselor who has helped me

along the way - she has a keen eye for finding areas to improve, helping fine

tune my vitamin supplements and being a voice of support and hope (she has been

on the diet now for eight years and is med free I believe and doing well) - her

confidence about how the diet has worked for her - even when I would suggest to

her that I must be one of the few that may be unlucky and not able to do well on

the diet - well it just kept me going. Today I am hopeful to regain an upper

hand on Ulcerative Colitis - my message to you all in the early stages (and to

myself in those hard times which I am sure I will be tested on from time to

time) is to keep going - it's the small steps and successes and efforts that are

necessary and count. Thanks for reading, thanks for being an excellent resource

for me on this journey - let's all keep moving forward - have a splendid

weekend!

aiazeen ()

UC 6 yrs

SCD 10 months 1 day

5 mg Prednisone

Asacol 800 mg 3x a day

Dropping the Canasa suppositories at this point

Imipramine 20 mg/day

May 29, 2009

It is nice to hear good news on a Friday =D Glad you're doing so well, and it really is encouraging to hear things like this! Congratulations!POur Dieu, pour terre,Alyssa =DHello all,As with the trials and tribulations of managing Ulcerative Colitis and SCD I would also like to report success to give others hope and perhaps some direction to ponder. I am still on 5 mg of Prednisone, but I hope to be off of this soon, but on a very slow taper...I am also coming out of another flare. My relationship with food as well as dealing with my impatience and coping mechanisms is changing - I think this has a lot to do with my success. About three weeks ago I partook in more wine than I should, followed by introducing some bok choy that was to much for my still sensitive gut that was already reacting to the wine. The result was a milder flare - one that did not prompt me to increase my Prednisone as my doctor would prescribe if I were to call him. I contacted my SCD counselor and we went back to the basics (not eating after 6pm due to slower digestion and going back to basic foods (for me that is ground beef, ground buffalo, yogurt, green beans and zucchini, Romano cheese and some honey and very weak coffee in the morning). The very next day I was hungry in the evening and feeling sorry for myself - I had started a period and I was craving sugar something fierce. "I am sure some cooked up apples with honey and cinnamon shouldn't hurt - hmmm maybe a little OJ in there to keep things moist," I thought and executed - the next day was horrible - I went form 4 BMS to 8BMs and bleeding now. I could not report to her which of the items was the problem because I had introduced all these new foods (OJ, apples, cinnamon), but she was pretty certain fruit so late into the evening was not good, much less at 8:30 at night due to slower digestion - she said to cut all of these out and now - due to the bleeding, I should cut out my beloved coffee in the morning. Damned if I did not do this to myself. I keep trying to push the envelope, but this disease does not look the other way when I cheat. I stuck with my core foods and even with these I found that I could not have too much banana (more than 1 banana a day bad and if all at the same time bad - needed to split up throughout the day for example) -from here I introduced some other things, like lemon...WOW - back up to 10 BMS almost overnight and gas - cross that off the list for now. What I am trying to say here is that the slow and mindful intro of fodds (for me every couple of days is essential. Over the last ten months I have been tweaking this, but I can asure you that this is not an overnight process. It was never said to me this way (but it was in different ways that just did not clock for me)but finding the core foods that one can have during a flare are essential, this will take time to determine both in type AND in quantity per day and in time. It will take experimentation and analysis of a food log, and there will be variables like - coffee ok after D has subsided but not during - or Chedar ok when D has subsided but on 1.4 of a cup tolerated so far. I also learned that chicken, carrot sna spinach do not work for me right now and do not seem to work for me when I am out of a flare, I have never tested positive for allergies for any of these items so I may experiment with them when I am much much better (i.e. flare free for months and off prednisone). Oh - that is the other thing - another variable is the ole Prednisone - sneaky sneaky - major confusing variable because at 10 mg I tolerated so much more of the above without trouble and had trouble considering that a little 5 mg could make such a difference in masking symptoms - don't rule this out. Also with Prednisone...I am going on the faith of the SCD counselor with this one but since I have been on it for six months now (mainly at lower doses of 10 mg or less) it creates it own problems in healing. As I understand it, it is a miracle anti-inflammatory...at the same time it is an immune suppressor in it's own right - especially after a longer term course with the stuff. If I was not on Prednisone I may heal faster from flares that what I am now (which this last one was three weeks - ones in the past have been months) - I am hopeful and anxious (but will not be hurried) to get off Prednisone for hope of even faster bounce backs if I am to introduce a food that does not agree with me, or if I overindulge on something too much (like wine - which I have to say is NOT the solution for coping on this diet protocol - I do not think you can become an alcoholic on this diet thank goodness) - I think my new forced coping mechanism is walks, exercise and journalling - one thing for sure, the diet lifestyle forces me to have healthier coping strategies. Happy 10 months to me - this "doubting " is starting to finally feel some headway. I feel so empowered of my recent success getting out of this latest flare - looking back on my prior food logs, I can see with clarity major food offenders that I am sure contributed to me staying stuck in a flare for months - it just had to tkae time and perseverance and STRONG analysis. I am indebted to Shelia Trenholm, the SCD counselor who has helped me along the way - she has a keen eye for finding areas to improve, helping fine tune my vitamin supplements and being a voice of support and hope (she has been on the diet now for eight years and is med free I believe and doing well) - her confidence about how the diet has worked for her - even when I would suggest to her that I must be one of the few that may be unlucky and not able to do well on the diet - well it just kept me going. Today I am hopeful to regain an upper hand on Ulcerative Colitis - my message to you all in the early stages (and to myself in those hard times which I am sure I will be tested on from time to time) is to keep going - it's the small steps and successes and efforts that are necessary and count. Thanks for reading, thanks for being an excellent resource for me on this journey - let's all keep moving forward - have a splendid weekend!aiazeen ()UC 6 yrsSCD 10 months 1 day :)5 mg PrednisoneAsacol 800 mg 3x a dayDropping the Canasa suppositories at this point :)Imipramine 20 mg/day

May 29, 2009

Hey ,

I remember all of your difficulties and I am just so happy and psyched for you

that all of your hard work is paying off!! It sure is a life changer the SCD

but as I say I had my whole life to eat whatever I want and it got me nowhere!

So here I am post surgery where I am told I can eat whatever I want, I would

NEVER go back to the standard american diet. It would sure be nice to travel

and not have to be such a fanatic about cross contamination.

Keep up the good work!!

It's a true process of self discovery and we learn our individual tolerances and

what our own bodies need.

Jodi

May 29, 2009

Hi ,

Thank you for sharing this encouraging story! I have also just come out

of a very frustrating time. After 1-1/2 years on SCD with constant,

continuous improvement (outside of a few incidents where I could easily

pinpoint the problem), I experienced the first bleeding episode since my

initial diagnosis in mid-March. I had several thoughts about what caused

it and in retrospect I'm pretty sure it was from IV antibiotics I

received during an outpatient surgery, but honestly as I went back to

the intro diet without improvement and finally started back on

medication (I had been completely med-free and symptom-free for almost 9

months) I started to question the SCD.

As soon as the bleeding started, I went back to intro and didn't see any

change whatsoever. I eliminated fruit. I eliminated dairy. I gave up all

my nut flour/butter goodies. I was consuming lots of chicken soup and

the most simple foods. No change. Even when I started back on

sulfasalazine, nothing changed. Still, I continued on with the diet and

started adding in daily probiotics. The bleeding finally stopped when I

started Canasa suppositories, which made perfect sense to me since my UC

is mostly in the rectum and a small section of lower bowel. During the

whole flare, my stools stayed pretty firm and consistent - and that's

the one thing that made me continue to follow the diet. I thought, " At

least my intestines are not inflamed and I'm not seeing D or thin

stools. "

I went on vacation to the Cayman Islands and although the bleeding had

stopped just before I left, I had a little loose stool there, but like

you I think it might have been too much alcohol. I am now feeling great

just like I did before the flare, and I'm newly committed and encouraged

to continue the diet. I am sure it helped the flare from becoming worse,

and I think that the combination of increasing the probiotics and eating

more intro-style food was a huge reason why I improved so quickly.

My next steps are to slowing discontinue the Canasa and then see about

reducing the sulfasalazine. In the meantime, I've added back my nut

goodies (without whole nuts in them) and am still avoiding things like

salad and other more advanced foods. I'm doing great.

Thanks again for sharing your story - it's a great testamonial!

Kathy

UC since 12/05

SCD since 7/07

sulfasalazine 1000mg/2x daily

Canasa 1000mg every other day

May 29, 2009