Wednesday, July 16, 2008 ~ Colitis & Me

Last evening I dove into Raman Prasad’s “Colitis & Me” and could not put it down.  His experience on prednisone is so right on.  It’s a miracle drug and a terrible drug. I hate it: I love it.  Today, I went down to 20 mgs and I am nervous.  I don’t want pain.  I am afraid.  And yet, like Raman says, I feel much better, psychologically, off the drug and I wonder if it was making me sicker.  God!, in the hospital I was up to 60 mgs and I was a crazy woman.  I couldn’t sleep or sit still but I felt lethargic and depressed.  I think feeling bad and in pain is often a result of a combination of things in this mysterious and strange disease. 

I relate completely to Prasad’s story and yet in many ways his experience was much more painful as it just dragged on for so long.  He never experienced remission.  I have been fortunate to have had long periods of remission on Asacol and Azathioprine and for that I am so grateful. 

I can understand his frustration with the doctors and with test results.

For example, when I take my car into repair, prior to paying or ever having any work done, I am usually provided an estimate or some detailed report.  Why is this not so with the doctor for health issues?  Doctors are busy people, but couldn’t the patient be provided with automated information including test results and notes? I think partly this is seen as taboo in the medical world.  There exists a real hiearchy between patient and doctor.   When I was in the hospital I had many blood tests, stool tests, x-rays and never saw one single test result on paper.  I was told results when I asked, but the detail in the answers varied and this stuff is hard to remember.  As a patient, I think this information would be helpful in making important decisions.

I have not yet finished Prasad’s book but apparently he finds relief through diet.  Prior to, his troubles with food and digestion, I find so similar to mine.  I have this pre-occupation with diet and eating. It’s as though I may never get enough or get it right.  I am always thinking about my next meal and what I can concoct that will be delicious and satisfying, yet go down, stay down, and come out well.  I also go back and forth between eating healthy and right to going totally over the edge and JUNKY FOODING OUT!!  Its terribly discouraging and time marches by marking what goes in and out my body.  I constantly strategize and doing so wears on the soul after awhile.  I then find ways to reinvigorate through creativity, dance, and other distractions like house rewiring and painting.

Sunday, July 6, 2008 ~ Progress

I went with Mary (Bill’s, next door) to yoga at the YMCA this AM.  It was fabulous.  I awoke so crabby today, did not want to do anything.  I ate and then went back to sleep until Mary’s knock for yoga at 10:15.  I so didn’t want to be in the yoga class.  I felt resistant, lethargic and lazy and the worst is, I sweat like a pig. 

After 20 minutes, my hair is sopping wet as though I have been swimming and I get self-conscious about it.  Of course, in my blur I forgot to grab a towel and the paper towels do nothing. Somehow I slogged through the poses and at about half way through I started to feel terrifically better and even satistfied to be there.  By the end of the 75 minutes I was calm and relaxed and I even got sort of into the oms.  She always has us do three at the end. 

The rest of the day was good as well.  Me and Tad hauled a bunch of crap that was being stored on the hall landing of our second floor, down into the basement.  Now, when I get up to go at night I won’t have to navigate the junk obstacle course to get to the toilet.  I always have this fear of catapulting down the stair case which is just outside our bedroom door on the way to the toilet.  Sigh!

I spent an hour in the sun this afternoon as dear Mary (Bill’s) planted the Japanese snowball plant along the fence in my backyard.  Thank you Mary!!

Meds today:

(5:30 am) ~ prednisone 5mg tabs,  dosage – 30 mg
(8:30 am) ~ calcium supplement 1000 mg, Vit D 400 IU, Vit C 60 mg, Mag 150 mg, dosage – 1 pill
~ vit D drops 200 IU – dosage 1 drop per day
~ lactobacillus acidopholisus caplet – dosage 1 cap(6:15 pm) ~ azathioprine 50mg tabs, dosage – 150 mg ~

(6:15 pm)~ azathioprine 50mg tabs, dosage – 150 mg (take in evening)

about three (half tabs) of the anti-nausea meds.

Poops today

~ There is a difference.  I have had one soft stool and some passages with no blood.  A few with blood.  I think I am making progress toward reducing inflamation symptoms.

Food today

(6:30 am or so with my pred dose) ~ milk with 3 graham crackers

~ (9:30 or so) plate of steamed pot-stickers, protein shake with oj, bee pollen; Gatorade’s;

~ (noon) left over fish noodle soup with frozen spinach; frozen kashi waffle with honey; Gatorade;

(snack) warm lactaid milk with match tea, cocoa powder, spot of instant coffee, tsp or so of honey; gatorade;

(snack) quart of water; frozen toasted kashi waffle with butter and honey;

(6:15 pm) small glass sparkling white wine; Still deciding dinner.  Eating is tedious sometimes.  I don’t have much of a desire for food and nothing really sounds good.   But I know eating is critical to building up my strength.

Friday, July 4, 2008 ~ Thinking About Food

I absolutely love a good meal shared with friends, family, good wine.  Not much can top a genuine feast of all the senses, laughter and fine spirits. Its one of my favorite ways to spend and evening.  Sadly, that is not happening this day and I pine away for those times.  Tonite, I sit with my protein shake and watch the fireworks on the TV.  Tad went to get me some gatorade.   It is only during flareups that I modify my diet.  When in remission I eat anything I want and thoroughly enjoy myself!

Today I had particularly bad pains and cramping while I was out on quick trip to Costco.  Costco ended up being closed because of the holdiday. (Duh! shoulda called first!)  I ended up at Central Market, one of my favorite stores ever, wondering around in pain, aimlessly throwing wierd stuff into the cart and then leaving in a daze after an emergency run to the bathroom.  I think the cramping was a result of too much fiber coursing through my bowels. 

When I am well I usually try to eat a high fiber diet.  During flareups I reduce the fiber. However, those of us with UC might benefit from soluble fiber because it would slow the digestive process.  Whereas, insoluble fiber promotes bowel movement and pushes toxic wastes through the colon more efficiently.  Not necessarily what the UC patient needs during a flare up.

I think its hard to separate the two fibres. Oats are good because they have both and oat fiber may help with blood sugar levels which can fluctuate if you are taking prednisone. Flax seed apparently like fish oil can aid with inflammation. Protein powders with psyllium, oat bran and spirulina have always been a part of my recovery after a flare up.  I had thought they helped me.  However this time I am not sure, but I am doing two protein shakes a day.  They sit nicely on my tummy and fill me up well. 

Right now high quality proteins are really working for me, especially fish and chicken.  I think for me that dring flareups the low-residue might work well right now.