December 10, 2008 ~ Hannah’s Story

I just recieved a comment from Hannah and checked out her blog: Living with Ulcerative Colitis.  I am incredibly moved by her story. This is a young woman with sass and insight. I love you Hannah!!

Please read her blog and consider a donation. She, like many Americans is uninsured with a pre-existing condition, ulcerative colitis. She is too old to receive coverage from by her mother’s insurance and yet young, still working on her education, and cannot afford individual high priced insurance premiums.

Hannah could use your support and she offers many creative ways in which you can do so.  Even if you don’t want to donate,  her moving story of perserverance, told with effervescent honesty will truly inspire you. 

Hannah is a lovely young woman.

Monday, November 7 ~ Friends took away my pain

The last few days have been bad.  Earth moving spasms, induced sweat, drenched, hot, sharp and stabbing breaths took while sobbing, aches all consuming, nauseating pain.  They rocked my body until  finally exhausted and relieved, surrenders to soothing massage, hot showers, deep full breathing, foggy, drugged sleep and finally, funny You Tube videos of really cute cats.  Mew came to see me and drank wine, while I didn’t.  She made me laugh. Lisa came and brought me “Spa-On-A-Tray” complete with spa-doll, spa-yoga towel, spa-soap, spa-candy.  Crystal brought me flowers. They were lovely. Mad brought me Anne Bancroft in 84 Charing Cross Road. Now I want big round reading glasses like Ms. Bancroft’s.  Grace delivered flowers.  They were beautiful.

The Autumn days pass by. Hopefully, with each one better then the last. 

Saturday, November 8, 2008 ~ Pain management drama

Crystal's Flowers!!

The last few days have been hell.  I’ve had a tough time with pain management.  I have no appetite. The thought of food makes me nauseous.  On Wednesday I called the doc and she encouraged me to take in more fluids and to continue with Alleve and add Tylenol into the regimen.

Yesterday afternoon (Friday) I gave in and went on Hydrocodone/APAP; two pills every four hours. I had wanted to tough it out but the Alleve was doing a real number on my stomach and not managing the pain.  I was miserable.  After taking the Hydrocodone, I spent the afternoon in a dazed state on the sofa.  Finally, about 9:00 pm, to bed and at 10:30 I woke with no pain, took two pills. Twenty minutes later I was overcome with body wracking spasms of pain. T put a call to the emergency doc. I spent ten minutes talking with the doc and we concluded that I didn’t have a blockage.  No sense going to the hospital. 

I think lying down immediately after taking the pills induced the nausea; also, lack of food and adequate hydration. T made me a protein shake and Gatorade with ice.  This morning at 4 am I woke with no pain.  I took two more pills, a long hot shower, ate some marshmallows, read for a bit and returned to bed.  I woke at 8:30 am feeling no pain. I am now enjoying chocolate protein shake and some dry toast.  I am feeling tentative.  My guts have some movement and much gurgling.  The meds create this kind of masked shut off dull feeling. Its as though the pain has been tightly swaddled.  I am thinking more positively now and I am motivated to write.  These are good things.  I must be on the upswing.

 

Sunday, November 2, 2008 ~ 3rd Day Post TakeDown Surgery

“A thought is energy, and as it is transmitted, it is multiplied. Thoughts can either be positive, negative, or neutral, and they may travel all the way around the world as energy, affecting the way other people, and perhaps other beings, think.  If I thought negatively, then I would put out negative energy, but if I thought positively, I would put out positive energy, expanding the possibilities of what could happen.”  Grayson, by Lynne Cox

I stayed home today playing with my new colon.  Takedown surgery is complete and I am home.  The new colon is working quite well.  There is much less maintenance involved then with “Puffer”.   I have passed gas and had about three bowel movements today.  Yesterday, in the hospital, I started with liquid food and all went right through me.  Trust me, it’s a quite remarkable feeling to drink a cup of warm tea and have it immediately come out the other end (still warm).   I resorted to giant diapers and my thoughts on dealing this were quite sobering.  Good thing for me,  an hour after my first loperamide (Imodium A-D) and a few crackers, everything firmed up just fine.   After three hours I shed the damned diaper. Gawd!  However, I have an entire package (size large) sitting on my bathroom floor that T and I have contemplated on what to do with. Mew suggested saving one for Halloween next year and going as a lady astronaut.  Ha! ha!

I am home from the hospital since late afternoon Saturday.  I am so glad to be out of there.  I tell you hospitals are just for those who are sick.  I am not sick!  Far as I am concerned this is just maintenance.  I am moving a bit slower than normal.  Managing pain with naproxen sodium about every 4 hours.  There is a 3 inch incision diagonally across my abdomen, to the right of my belly button, where my stoma, “Puffer” used to be.  Three stitches loosely close up the “wound drain” and its covered with gauze and tape.  I change the gauze tape after showering.  The point is to keep it open and aired out.  My right oblique muscles  and lower ribs are a bit sore.   I wonder if the surgeon was leaning on my ribs or something while operating?  They are sore.   At night I am taking 5 mg zolpidem for sleep.  I think good quality sleep is conducive to healing and the zolpidem helped me last time  for a couple days after surgery. 

I have tolerated food quite well today.  My abdomen is a bit distended and I get a bit gassy while eating, then it subsides.   Had oatmeal and hot tea for breakfast, leftover Chinese and rice for lunch and dinner.  I am too lazy to cook right now.  I can only eat about one third of a serving before I get full.  But no stomach aches and I feel hungry. 

I’ve been up walking around but no sudden moves or heavy lifting.  I spent the day on the sofa reading and napping on and off. I read a really charming book, Grayson by Lynne Cox.  At seventeen she swam the English Channel and set some kind of world records.  This story is about her experience with a baby gray whale and its return to his mother. Cox literally bumps into the baby while swimming off the shores of a beach early one morning on southern coast of California. I so wanted to be there with her swimming with dolphins, sting rays and this beautiful baby gray whale.  It was the perfect book for today.                

 

Saturday, November 1 ~ Second day post takedown

7:00 am: The doc has cleared me to go home at whatever time I am ready today.   Its too early to call anyone.  I order breakfast instead.  They take me off the saline and the IV drug.  I wasn’t pushing the button anyway.  Right now I’m on anti-inflammatory’s and Tylenol.  They are fine for now.  My mom-in-law will be coming to take me home. 

9:05 am: I have had a shower and I am eating some cream of rice cereal with honey and cream.  The food runs right through me. I need a diaper. Ugh!  The doc has said to take Immodium AD.  I am not in pain but I am uncomfortable with the liquidity of my bowel movements. 

Now in room 1073. I moved from 1075-2 to 1075-1 and now I am in room 1073. I had to give up the window seat.

October 31, 2008 ~ Halloween and 1 day post takedown;

Surgery went well and I am one day post takedown.  I am on saline IV and ice chips.  I peed once, so no catheter necessary. For pain, I am on morhpine and some anti-inflammatory IV.  I was on something else before and it made me depressed so they changed it out.  Now, I have a slight tummy ache.

Puffer is gone.  The wound is odd.  There are approximately three wicks (waxy white substance) submersed into the incision.  Some bleeding and discharge gently oozes from the site.  Apparently this promotes healthy healing. 

I had some drama today.  I awoke from a two hour nap to find my abdomen around the incision site drenched in blood.  I pressed the call button and no one came for a good twenty minutes!  The floor was bustling with a bunch of pressing issues.  Luckily for me, the nurse manager appeared in my room and took charge.  The two resident docs eventually showed up to say really it wasn’ t all that much blood.  At about the same time I was suddenly consumed with nausea and inconsolable sobbing.  It seemed so surreal to me.  I did vomit and I did finally stop bawling.  At the time I shared a room but my room mate was moved to a private room.  This left the brightly lit window side of the room available for me!  Working the moment, I quickly asked the nurse manager for the brighter side.  I enjoyed it for several hours while AK and M visited, and then they told me I’d be moving again.  Apparently a male needs a room and so I am to be put with a female back on the dark side of the room.  Ugh!  Life is full of haphazards.

October 29, Wednesday ~ Eve of Take Down Surgery

Today was spent fasting and downing antibiotics. It was not too bad.  I cheated a little.  I had an americano with a bit of cream.  Also had some sorbet with a bit of milk solids.  It’ll be okay.  I drank several cherry flavored gatorades, clear chicken broth and clear coconut milk.  Thank you my dearest D. (my lovely coworker) for the delicous homemade chicken broth.  It is the best I have ever had. 

Surgery’s scheduled at 10:45 am tomorrow morning.  AK spent the day with me.  She did laundry and we crashed on the couch watching “The Holiday” and “Click”, one sentimental, romantic and the second goofy and stupid.  Click is kind of like “Its a Wonderful Life” Adam Sandler style, with all the poop jokes and dum sex pranks imagined.  Both movies, perfect for a day like today. 

I’ve been thinking about saying so long to Puffer.  Having my stoma has been a great experience and I have to admit I am a bit anxious about this next phase.  I know now, that if the takedown fails for whatever reason, I could again live with “Puffer”.  However, the docs say I will come through great, given my past good recovery.  I am relatively young, healthy and strong. So, I continue to think positive.

October 17, 2008 ~ Puffer, digestion, long walks, exercise

My take down surgery is in 13 days.  Today I changed Puffer’s bandage with now problems.  The process has become routine.  The skin arount the area looks really good; not red or irritated like it was.  I now change the bandage with the first feel of itching or the bandage begins to peel away.  I remove it,  jump in the shower, sans bandage.  The freedom is refreshing anb this allows my skin time to moisturize and air dry. When Puffer behaves and there is very little output. I read marshmallows really help slow down the output.  I have tried that with mixed results and I adore marshmallows! This time Puffer was extremely busy and the process is utterly fascinating.   Eat food, chew food (twenty times or more), swallow food, food through esophogause, to stomach; some processing and then onto the small intestine.  Brief stay in there and then out the Puffer shoot!  The partially processed waste transforms to watery discharge, I understand comes from the liver.  Hunger strikes again.  Eat and there we go again, so long as I am eating, drinking and refueling my body regularly. 

I cleaned my dresser drawers and set aside cute jammies for my next stay.  Summer is over and this time jammies will be warmer.  I also have some things to buy: soft toilet paper, Imodium AD.  My doc said he hands this stuff out like candy after take down. 

I have been working out: belly dance on Mondays, yoga on Sundays.  Friday, I enjoyed a fabulous four mile walk with a co-worker at lunch along the waterfront.  The sky was brilliantly sunny and temp pushing sixty degrees.  This week I attended Zumba class.  Zumba is fabulous new fitness exercise set to Latin dance rhythms, salsa, meringue and rumba.  Love it!!

October 2, 2008 ~ Take Down Surgery scheduled October 30

Twenty eight days until my take down surgery.  I feel fabulous!  I eat and drink whatever I want. I have no more stomach aches, no more bloating, no gas, no diarrhea, no blood.  My energy is up. I work out all the time — belly dance, Zumba, yoga and walking.  I so love exercise. It is my magic elixir.  There is something else for me now as well. This morning I noticed the clouds in the sky and I do this more often.  I slow down more then ever.  I hear the birds and I just chill.  Tonite I was rushing out after work to jump on a bus and rush home.  Then I noticed the tension and the urgency within me and I intentionally stopped, slowed down and just walked home.  I am fortunate to have no commute as I live but one mile from my university campus job.  I walked and watched all the people.  New students are in town now that Fall has begun and my neighborhood is vibrant with energy.  Lines spill from restaraunts as students wait in line for dinner at noodle houses, pizza spots and burger joints.  College students, young, energetic, hiply dressed and very hungry.  They are developing new friendships and having experiences for the first time.  Young love and sex are in the air!!  I enjoy watching all this unfold past me as I walk up my aptly named University Avenue.

My own daughter has joined these ranks this week.  She moved into a boarding house with her own room and enrolled in full time community college, as well holding down a full time sales job.  I am so proud of her.  Last night we shopped for linens for her new place and then enjoyed dinner after.  Crisp Autumn and newness envelope me this time of year.  In a few weeks I will enter the ranks of those with a new colon.  I look forward to this.  I have been so fortunate so far. 

Its amazing to me how this experience, being sick this summer, surgery and recovery have all sort of woke me up in my life.  I appreciate the little things so much more.  I was helping my daughter clear out of her old bedroom in our home and came across the card with the following saying: “Arthritis and Old age are not real, do not exist until you experience them”. 

I felt that way about UC.  While it was in remission with the drugs I had no problem.  Everytime I heard of surgery or further sickness, it was easy to say, oh, that’s not me.  Then, when the remissions ended finally this summer, that is when I really had to face my illness.  Especially with the diagnosis for removal of my colon.  At first, I felt so distraught and saddened I could do nothing but cry.  These days, as I deal with my stoma and the self-care it insists I am completely at ease with it.  I have this affinity for my little Puffer.  I care for it, wash it, dry it and tend to it regular.  It will be an adjustment when it is gone.  I think I might feel a little saddened by it.  For me, the anxiety I experienced in the early days has morphed into maternal thoughts and a better self esteem.  Next week I meet with the doc for my pre-surgery prep.  It will be interesting.

September 8, 2008 ~ Recipes Good for the Colon

I am slowing down in many areas of my life.  I am taking it easy.  Smelling the flowers and enjoying the sun.  And I find more time for simple pleasures, like cooking.  Check out my Recipes Good for the Colon.  More to come later.