RE:JOE / BACK FROM SISTERS WEDDING

[Guest guest]

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. Dont get me wrong i enjoyed it and was just glad i didnt miss it or decide to stay at home and let the diorreha stop me from going it was just i had to keep going to the toilet during the meal times then keep going back to my hotel room to change underwear etc and have a lie down which meant i missed a lot of the good stuff like speeches and cutting of the cake etc which was upsetting, also not being able to drink alcohol and get up and dance etc all the stuff really annoyed me. I brought down my own scd food which the hotel kept in fridge for me so i had the intro chicken soup for starter, chicken and purred carrots for dinner and some yoghurt for dessert. It was tough looking at what all my family and cousins were able to have while i

was eating bland food with no taste. Anyway i tried to keep the head up and smile but i really was angry i couldnt enjoy the day the way i wanted too. The next morning i went down for breakfast and it was the same all over again everyone having eggs, sausages, bacon pudding,toast,jam,tea the "full irish breakfast" as we call it and i just decided f**k this, i spoke to my dad and sister and said look im having a normal breakfast and i did!!

The reason for this is ive considered lately stopping the scd until i have my surgery done which means getting my colon removed. The way i see it right now is since starting the scd bout 2 months ago i have not gained weight but have lost it where i am now 6 and a half stone which means more chance of complications when i get my surgery done. I need to gain weight and after breakfast that day i went on to have a burger for dinner with normal white bread,mayo and ketchup, a dcouple of diet cokes and a small bit of pasta and later that night i had a slice of pizza which my cousins oredered to the hotel. Next morning (monday) full irish breakfast and later on before going home had an ice cream cone with a choc flake in it. Got home and for dinner had an scd meal which was a sheperds pie made with cauliflower instaed of potatoe (recipe from roman prasads scd cookbook, then made a smoothie

later on with homemade yogurt, ripe banana, butter, coconut oil, honey and vanilla extract, i also had two fresubin drinks (kinda like the ensure drinks) which are scd ilegal but like i said i need the calories and vitimans etc.

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 nature

Regards Mark

Prednisilone ( 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 tabs

Freeda Calcium tabs

Diognosed with chrons/UC 1998

Started SCD bout 2 months ago

To: BTVC-SCD Sent: Sat, May 29, 2010 11:01:58 PMSubject: Re: What to expect when introducing foods?

I should clarify too. I don't have UC or IBD. I was told by one of my gastros that I have IBS, but I'm still not convinced that's the problem. The main issue I'm dealing with is really bad anal leakage. I have abdominal problems and some slight constipation and diarehaa, but that I can handle. What I can't handle is the constant leakage of liquid and mucous. I go through several pairs of underwear a day, and I can't even think about leaving the house for more than a half hour without having huge underwear stains. Is there anyone out there with this particular symptom? >> I have been on the diet for about a week now and haven't seen any difference in my symptoms. It's the same as when I was eating whatever I wanted. I know these changes are

not immediate, but how am I supposed to know whether or not any new foods I introduce are bad, when my symptoms in general have not improved?> > As it is right now, I've cut out the eggs and the carrots from the intro as suggested. I've eaten pretty much nothing but chicken and steamed zucchini for the last five days. I want to start introducing some more things but don't know what a "bad reaction" should consist of if I'm still on the toilet five hours a day with severe leakage.>

[Guest guest]

Mark,

I am glad you were able to be at your sister's wedding. I really wish that you

had had more time to try SCD before becoming so sick that you have to have your

colon removed. It takes a long time to heal, and starting out as sick as you

are, a few months probably won't change much. Knowing that the surgery is soon

is a tough incentive- for whatever you do..it's coming out. There are some

people who have improved to the point that surgery was not imminent. Of course

that is between you and your doctor.

The reason to be on SCD is for the long haul, not the short term results. You

won't always see much difference in the short term, which is very discouraging.

SCD also has to be 100% of the time so it does no good to break it once in a

while.

That said, I don't blame you. This had to be so frustrating. But the reason for

being on SCD was not to be symptom-free at this wedding...but possibly at YOUR

wedding one day and if not that.. your CHILDREN'S weddings.

That was my incentive for starting SCD a little over a year ago. Staring SCD did

not help me in the short run- I still missed my daughter's soccer games, sat in

the bathroom during her math competitions and so on.

It was this year that I went to all the competitions, visited my kids in college

and more. Yes, I have a cooler of food at all times, but thank G-d I was not in

bed or the bathroom.

I am on SCD so I, G-d willing, can enjoy their weddings someday. I don't expect

to eat off SCD--- probably ever. But I don't have to eat their wedding cake to

be overjoyed at the event. Maybe they'll have another SCD cake for me.

Mark- going on SCD is a choice. It's a risk- there are no guarantees, but the

testimonies here from so many that it has helped was reason enough for me to try

it.

You must make your own choices for what you need in life- to eat like everyone

else, or to try something that may help you feel better in the long run. It's

not easy and nobody will judge you. It's all we can do to encourage you to try,

and hope that you are well no matter what you choose to do.

PJ

> >

> > I have been on the diet for about a week now and haven't seen any difference

in my symptoms. It's the same as when I was eating whatever I wanted. I know

these changes are not immediate, but how am I supposed to know whether or not

any new foods I introduce are bad, when my symptoms in general have not

improved?

> >

> > As it is right now, I've cut out the eggs and the carrots from the intro as

suggested. I've eaten pretty much nothing but chicken and steamed zucchini for

the last five days. I want to start introducing some more things but don't know

what a " bad reaction " should consist of if I'm still on the toilet five hours a

day with severe leakage.

> >

>