Looking for support through this difficult time

[Guest guest]

6 1/2 months on SCD. I am in a really bad flare - each on is worse

than before (as has been the process for the last five years since

being diagnosed.) I stopped the mait meds in October (Asacol) 2

pills 3x/day due to the illegal binders. I am allergic to the

Alsufadene that is supposed to be better. I never totally got rid of

the flare that started in mid Dec. I figured I could get off the

Predisnone that I had been slowly tapering off of if only a little

bleeding and 3-4 BM's a day. Within a week of getting off the

Prednisone late Jan 09 the symptoms crept back up each day to more

bleeding and over 13 BMs a day. I started on 30 mg of Prednisone

about three weeks ago and called the GI. I got into him a week later

and he pushed me up 2 weeks ago to 40 mg of Prednisone and an

antidepressant called Imipramene 10 mg/day to help with the mind gut

connection. He says there are case studies out there that patients

who take this or another form of old school antidepressant - have less

symptom flares. This is pre drugs like prozac.

I have an SCD counselor helping me through each step but for the last

several days I have not been able to reach her and her phone is busy,

so not sure what is going on.

Most of the bleeding is gone but the D visits are still 6 x a day

(actually more if you count the one's that I call 1/2 visits)...and I

am now dealing with hemorrhoids. I would have thought the Prednisone

would have acted faster than this. At 30mg I will start on Asacol at

this point again. Doc says he hopes in time the introduction of the

two drugs will help my situation. If not we are back to the

Prednisone regiment again and the introduction of Immune suppressors.

I have agreed to give this diet at least two years to see lessening of

symptoms and I am still committed to doing this. I am, however,

rather scared at this point and I do feel like I need medication. I

am doing my best not to catastrophize this but I have lost another 8

lbs (13 lbs underweight now)and can only eat shredded chix, home made

electrolite drink, weakend apple cider and baked white fish. This

week I am trying to get in ripe banana and a little swiss cheese and

maybe try another well cooked and pureed zucchini or carrot.

Also, since in a flare the supplements I imagine would not absorb even

if I tried to take them (SDC counselor says hold off on these for

now.) I am feeling anxious about not taking a calcium supplement

while on Prednisone -(SCD counselor has suggested losts of bone broths

with a tsp of vinegar during cooking to bring out more vitamins ,

calcium and minerals during the cooking process). Does anyone know

how else to get calcium during this much needed time?

Any words of encouragement or - this is normal sayings would be most

helpful right now. Scared.

aiazeen

SCD 6.5 months

UC 5.75 years

[Guest guest]

Hi Aiazeen

I would say bone broths too. Try adding a teaspoon of butter for some extra calories and more satisfying broth. Also, I have read somewhere about cooking eggshells in the broth cooking process. Unfortunately I cant remember where I read it (someone else might be able to chime in here) but the eggshells impart minerals and calcium? into the broth. I think there may be some soaking in something like vinegar prior to cooking them required to get them "ready" to release their goodies.

All the best

Gillian

scd 2plus yrs

undiagnosed dodgy gut/ hla B27 pos

Invercargill NZ.