September 5, 2008 ~ Letter to my sister’s friend who may have UC (or she may not)

My sister tells me her friend thinks she may have ulcerative colitis. She is enlisted in the Army and evidently her army doctor does not agree. Friend, if you read this, check out Health Talk’s 10 Key Questions About Ulcerative Colitis. If you are the type of patient like me, who wants to be Nice, reasoning that maybe that will get me well, it won’t!  Patients get well when they ask doctors hard questions. You can ask them in a really nice way, but you must do the research and then present it to the doctor.

If after going through the 10 questions, and you still feel you may have UC, I think you should ask for a referral to see a gastroenteroligist.  Only a GI can properly diagnose UC through necessary tests.  Your GP can only troubleshoot.  For me, it was a long period of more than one year, before final diagnoses. Me and my GP had to get through a few other things first.

I had major back pain. We worked on that. I went to physical therapy. I was experiencing depression. She gave me Prozac. She tested my thyroid. Nothing. When she finally couldn’t figure it out what else was “wrong” with me, she diagnosed fibromyalgia.  However, I continued to have gastrointestinal flu like symptoms. She insisted it was irritable bowel syndrome .  Her suggestion was to eat a nice crunchy apple every day. I do this now, but at the time it did not help or change my symptoms.   Eventually she submitted the referral for the GI.   This was back in 1997 and Ireceived the sad news of a UC diagnosis.  I was prescribed my first UC medicine called Asacol.   I believe I had UC since before 1988 because I can remember symtoms flaring during my pregnancy with my daughter.  I briefly went on medication until the symtoms subsided and then I forgot about it.  Now, in 2008 after Asacol, Azathiaprine, and Prednisone, I sit without a colon.  But, I am healed from the disease and most likely will not get cancer.

So friend, I hope you read this. I hope you find wellness soon.

August 31, 2008 ~ Exercise after surgery and thoughts on Surgery #2

Its been 37 days (five weeks) since the ileal J-pouch anal anastomosis  surgery. Prior to this week I have mostly done only walking. This week, some real exercise! On Monday evening I attended Kat’s YMCA belly dance class.  Other than a bit winded, as my endurance is not what it was, I felt fine, great! The old abs and core muscles kicked in just fine and the shimmies were all there.  Whew!  I didn’t let the belly hang all out like normal.  Puffer was all safely tucked into my stoma belt. 

Thursday evening, I skipped out of work early to Mona’s YMCA’s 5:15 “Free to Be Fit” class.  Its a low impact step class.  I felt great and it was terrific to get my heart rate up.   I could do a plank just fine, no pain and no wierd tugs or pulls.  And today, Sunday I went to Maya’s YMCA Yoga class that I love so much.  Deep breathing, some meditation and downward facing dog were great.  I am only a little out of shape.  My legs a little weak.  My weight is still down and so I suspect I have lost some muscle mass. 

Before surgery I just couldn’t get a real sense of what life would be like after.  To imagine cutting directly into the center of my abs I thought all sensations and strength would be gone.  But after exercise this week I find that is not the case.  I think it helped to ease back in slowly.   Walking is magic. I think my Pilate’s sessions really helped as they focused primarily on core strength.  I am working up to going back to Pilate’s. It’s so good for developing core strength and powerful body alignment.  I guess I need to start on those anal Kegels.

My jpouch pull-down surgery is scheduled for October 20 but I would like to reschedule it.  Its Mary’s birthday and Kat’s wedding day, both on October 25.  How will I be by then if surgery is October 20th?   Can I successfully party if I am adjusting to the new J-Pouch colon.  I would like to be in good health on the 25th and right now I feel great.  I want to feel this great then, as well. 

Have you seen the University of Louisville Colon & Rectal Surgerypage?  It has some really excellent explanations of the “loop ileostomy vs. the end ileostomy.  The loop is the temporary ileostoma for J-pouch patients.  The temporary loop is pulled up from  “both downstream and upstream ends of the bowel come through the same opening of the abdominal wall.  The upstream end of the bowel drains stool from the small instestine, and the downstream end drains mucus from the portion of the small bowel that leads to the J-pouch.  The loop construction of the stoma allows for a simpler closure of the ileostomy and a shorter recovery time following pouch surger.  In the majority of paitients, only a small incision around the stoma is required to close it”. 

I think I understand that after the first surgery the “output” (that green brinish looking fluid) was from the small bowel–generated from the liver.  The doctors thought that was real important.  I am fascinated by the fact that the loop comes from two different sources within the bowel.  Somehow understanding this helps me cope.  Not that I am having difficulty right now, but this knowledge empowers me.  I realize there are two  possibilites the second surgery may take.  1.)  May just need small incision around the stoma; 2.) May have to reopen the first incision to remove scar tissue. 

I don’t like the idea of reopening the first incision.  Won’t that extend hospital stay and recovery time? Ugh!  I hope I don’t have excess scar tissue. I hope I don’t!  I hope I don’t! I hope I don’t!

August 24, 2008 Sunday ~ Allison discovers Colondar and colorectal cancer

 I am a skeptic by nature,  a down to earth, logical thinker.  However, a quite remarkable incident occurred this week with my daughter Allison that related directly to me and my stoma pouch.  Her experience has got me thinking that ulcerative colitis, in spite of chronic pain, major discomfort, depression, and the resulting surgery, somehow keeps inspiring beautiful surprises and many blessings into my life and to those around me.  Perhaps I am not totally in control.  I am learning to let go and just see what happens.  I relay that story here.  Allison arrived home last night beaming with anticipation and of course I wanted to hear about what she had learned and see her new skills in action.  She had spent a week in Northern California attending a Brazilian music and dance camp. 

She flew out Sunday morning and arrived there late Sunday nite.  After setting up her stuff, meeting a few new friends they set out for some ice cold water and beverages.  They ended up a quaint bakery shop just up the road from their camp area.  The place was booming with live Big Band music, swing-dancing, and happy people milling about talking and laughing.  At the counter she rang the service bell several times.  They wanted to pay for their beverages and return to camp.  As she’s waiting she notices hanging on the wall a lovely picture of a beautiful, semi-naked woman.  And she cannot help but notice this exquisitely photographed young woman has a serious abdominal scar through her belly button and along side it, a stoma!  Eventually Mark, bakery owner shows up and Allison asks whats with the photo of the woman with the stoma?  He is quite surprised and pleased that she knows this term. 

Wow! Allison shares with Mark all about my (her mom ’s) experience this summer with illness, disease ulcerative colitis and surgery.  Mark listened and quite impressed, he invites her to the party.  Mark explains that tonight’s event is a fundraiser Becca who has been diagnosed with colorectal cancer (for a second time). Allison spends the evening visiting and swing dancing with these fabulous people, many of whom happen to be survivors of colorectal cancer.  He points out that the photo she saw is the result of calendars which is the work of The Colon Club 

This classy calendar features each month an elegant  black & white photograph of a beautiful, semi-naked person with stoma, shunt and scar, along side his or her brief personal story.  Both Mark (July, bakery owner) and Becca (August) autograph their pictures.  Becca is an adorable 27 year old who writes “Carmen, Thanks for supporting, Here’s to naked people!”  I love it!  Mark writes: Hi Allison, Carmen! Thanks for your support!! Good luck and please stop by for a B&B stay. Our treat.  Also, check out the book “The 5 Gifts of Illness” .   Turns out, Mark and his wife have a cottage on their property reserved soley as a retreat for people dealing with cancer.  After reading Mark’s personal story, I realize how fortunate not to have cancer.

Allison loved her week at the Brazilian music and dance camp, but that first evening at the bakery was truly a exceptional begining to a quite remarkable week.  She thinks I should go visit this lovely special place in Cazadero, CA.  I shall see.  I am happy she got to meet these special people. 

Meanwhile, I encourage all of you to check out and perhaps donate to the upcoming The Colon Club fundraiser on September 6, 2008 in Little Rock, Arkansas. I did!

August 20, 2008 ~ Well-being and Mishaps with Puffer

 

My friend Mary is designing a “Puffer” tatoo for me.  She is a true artist and I am so excited she is generously doing this for me.

Mary

I am doing terrific!  I had an experience this weekend in the middle of the night where  I awakened to this incredible sense of well-being and good health.  I had this intense awareness of my body and no pain, no dis-comfort, just this quiet, calm solidness.  I turned over back to side, thinking, wow, I am truly healing and I feel better.   I have conquered this first phase and I had this knowing that I am in good health and will stay so until my second phase in October.  I was in peace and was okay if it did not go well with the pull down surgery, that I could in fact live with the illeostomy bag.  It would be okay and I would cope just fine. For something that was initially so frightening I am relieved to finally find peace.    I could not have done this without the love and support of my friends and family.  The Internet has been such a rich source to new friends and connections. 

There are so many things I want to do now that I am better.  We just had our house painted.  (I know, pictures! I must post them.  Perhaps I should buy myself a little digital camera.  I rely on my husband and my daughter to take photos, but they are always off working or at school. ) The house looks immensely improved and the aubergine/turquoise color is quite beautiful, but  it needs landscaping! Ah, just more opportunity for creativity and fun.  

I had two new experiences with Puffer this week.  Thursday evening was the fourth or fifth day of terribly hot weather and in the early evening I finally worked up the courage to go for my first swim with Puffer and bag.  Leslie had shopped with me recently to purchase a modest two piece (tummy covered) suit.  I put it on, check my bag for flat, empty and well secured.  I drove to the nice cool lake just before sunset. The beach faces West so the sun was warm and directly bathing my skin.  The water was the perfect temperature.  I truly adore swimming in the lake.  I paddled around a bit, did the side stroke, then the breast stroke then a bit of the crawl.  It felt so amazing to move my muscles and stretch and have the water hold me up.  My abdominal muscles were just a little on the weak side and I only stayed in about ten minutes.  It was perfect just to test things out.  I got out, sat in the sun and called my dad and then my mom to chat and tell them what I was up to.  After, I drove home and took a very long, extremely hot shower. 

The next day, Friday morning at work Puffer leaked all over on the inside of my over-long sports bra and panties as I sat at my desk working.  Ugh! I was unprepared for this and had to jump on the bus to go home.  Fortunately my bus ride is only ten minutes long.  However, it was so unnerving I did not go back after I changed the bandage and everything else. 

The next weekend I spent the night at my sister-in-law’s home on Whidbey Island. Still incredibly hot and she invited me over for a swim, dinner and shopping.  We had a terrific time. For supper, we indulged in pizza, salad and icey cold beer.   In the early morning I  wake up to pee and my bag was full  really puffing up like a a balloon. Apparently, from the beer?  Odd, it had not done this before. Sleepily I sit on the toilet which is smaller than ours at home, unwrap the bottom of the bag and POOF! Sh*)&% explodes everywhere!  Wow, did I WAKE UP!  It was so stunning that this happened.  At first I didn’t know what to do.  I got into the shower, fortunately right next to the toilet and also where the majority of the stuff went.  I scrubbed myself with soap, then all the walls, floor, and toielet with Lysol spray.  I ended up back in bed, fresh and clean in a little less then an hour.  It was amazing and I didn’t even cry. Fortunately, I had read many of the “emabarrasing moments” in the J-Pouch group and so I was somewhat emotionally prepared for mishaps like this.  Thank you to all you j-pouchers for sharing your stories.

Oh, and this morning, while changing my bandage, again as it leaked during the night (guess I haven’t got it down quit yet), a piece of plastic spit out from my stoma.  Is that odd or what?  It was about an inch long and very narrow.  I saw something white on the tip of the stoma and I grabbed it and gently pulled it out.  I am wondering if I ate something or was this left over from surgery?   Very odd…

August 12, 2008 ~ Christmas in August

Monday I returned to work.  I burst into tears when I saw my cubicle. My boss warned me I might not get much work done as everyone was excited about my return.  She wasn’t wrong.  My crazy, lovable, darling co-workers wrapped up my entire cubby with tape, bows and Christmas wrapping paper. 

Everything: each pen, pencil, my computer, the mouse, my silverware, my coffee cup and a few real gifts. 

 Notice the duct-taped exercise ball on my chair, ‘the pregnant chair’, its called.  

Then, at the entrance to our little office suite, they taped down yellow-brick-road arrows to show the way to my cubby in the event the surgeon took out my brain instead of colon.  I laughed and cried all at once.  And I am working on payback as Crystal is pregnant and she will be gone for many more weeks in February!  Hee! Hee!

Once again, I have lagged on my entries.  I am coping well.  Returning to work is such a great thing with today as my second day.  I was able to take the three flights of stairs up today without feeling winded.  My body amazes me continually.  I missed only twelve days work which is less than I thought.  This is good as I will need the time for the pull down surgery on October 20 and recovery after that. 

I was quite anxious about returning to work and wondering what to wear and if the bag would show.  I am not able to forget about it as I have learned from others that they do.  I am still always checking.  I packed myself a little kit for the bathroom and that gives me great sense of security.  In my kit I have: deodorant packets, scissors, water squeeze bottle, and extra pouches.  I am going to add in some wet-wipes.  I had a heck of time finding a small enough squeeze bottle.  I finally purchased one that was filled with saline solution for the eyes.  I emptied the solution out and popped out the little dropper thingy and voila, squeeze bottle.  I carry the kit with me every time and stop at the sink and fill it with warm water.  Its perfect.  I make use of the handi-cap stall and the extra hooks.  So, that is not bad like I thought it would be. 

I have been feeling a little depressed in spite of my positive intentions and I am not sure why.  The weather has been a bit dreary for summer and that could be part of it.  Generally, I tend toward a serious outlook anyhow.  But I really want to feel sunshiny!  How does one go about that?  If you have any ideas please let me know.

Eating: I am eating about two meals a day.  Thats about all I can get down before I feel terribly full and then the appetite just goes away.  Its really wierd.  But I try and make what I eat really count.  My new favorite thing is a meat burrito.  Here is the recipe

Simple Ground beef Meat Burrito

4 oz. lean ground beef

1-2 thin slices swiss cheese

1 whole wheat tortilla

1/2 or 1 c. dark green salad greens

salt, pepper

basalmic vinegar

Heat cast iron skillet on medium and add meat.  Saute meat until well browned.  Lay the cheese slices on top to the meat and then the tortilla on top of the cheese.  Turn off the flame.  Place a heavy lid over the tortilla allowing it to steam and melt the cheese.  (About one minute).  Then remove the lid, lift up the tortilla, cheese will stick to it, lay it on a plate.  Scoop out the meat on top and then salt and pepper to taste.  (Extra salt, remember!).  Cover with the salad greens and sprinkle with a nice balsalmic vinegar.  Wrap it all up like a burrito, sit down and and enjoy

Just want to send out good thought to Living with(out)uc  as she is having her surgery on thursday.  I hope it all goes well!

Wednesday, August 6 ~ 13 Day Check-in at the Docs

They took my staples out this morning, and marveled at a how good I am doing. The surgeon teased me about how soon I will be belly dancing again.  I mentioned the light headedness and dizziness and they poohed all that as normal symptoms after surgery.  I insisted on having my hematocrit test just to be sure.  I have been taking iron, eating protein heavy foods, which seem to help. 

It’s been so many days since I last posted.  The adjustment has been daunting.  On Sunday morning my girlfriends Linda, Mary and Lisa came by to take me to brunch.  Instead, they found me flat out on the sofa with low blood sugar and overall general lethargy.  They pumped me full of bananas, protein shake and liquids.

After about an hour, color returned to my cheeks and I was revived enough to go on out to brunch.  At the insistance of Linda, they placed us at the top of the waiting list because, me the poor invalid, could not stand long.  It was terribly sweet.  We had a feast.  I ate about one quarter of my breakfast and brought the rest home with me.  The reason I had let myself into this bad state was not eating.  Fortunately I have been okay since then I as went to Whole Foods and bought a bunch of prepared stuff to have on hand ready to eat. 

On Monday, Dana, another dear friend had me over to her shop and we had red lentil soup, fresh bread and hummous for lunch.  Then we took a whole big walk around the block with Tipper her dog.  I think I disappointed Tipper because we just passed by the park and didn’t even stop.  It was a pretty wimpy walk.   Keeping good food in me really helps though.

Tuesday evening was our annual block party and it was really nice.  I helped set up by making no parking signs, and 12th Ave NE was blocked off from NE 55th Street to NE 56th Street.  It was not an ugly summer evening.  There were three bbqs going and I steamed some wild salmon on the grill with polenta.  Yummy!  There were lots of children riding their bikes and the adults really enjoyed some good food, wine and conversation.  That was fun, and I wore out by 8:00.

The painting preparation continues in earnest on our house.  They are doing an amazing job of hand sanding and clean-up as they go.  I wonder when the painting will begin, but I am in no realy hurry and the weather is thoroughly cooperating.

Saturday, August 2, 2008 ~ Coping

Yesterday was the first day I spent mostly alone since my surgery on July 24.

It was difficult, and I spent the morning weeping uncontrollably. I spoke with my sister last night on the phone, and we both agreed the thing that makes us sad is the permanance of it. She had a hysterectomy several years ago.

It’s odd to have something taken from my body that I’ve carried all my life.  Sigh!

I am not sure what all the sadness was about, but after about twenty minutes I was tired and so I got up off of the couch and went to empty the Bag. Ugh!

I decided after a long hot shower I would go to Taco Time and have a soft beef burrito and then go to the lake for a walk. It was not an ugly day. Not a cloud was in the sky and the wind was a balmy breeze. I took about three bites of the burrito and tossed it. However, Taco Time has this fabulous soft crushed ice for their drinks and I took a large cup filled to the top with ice. I went to the lake and sat on the sand.  I waded in the water.  I watched the ducks.

I was hoping to just get some blood rushing through my muscles to counteract my restless-leg-syndrome. However, I learned from J-Pouch that this could be a result of anemia. Makes sense.

I walked along the path around the lake and stopped occasionally to sit on a bench and read my book.  It was really nice until the sun eventually went behind the clouds and it began to feel downright chilly. I headed back to the car. I had a nice time in spite of myself.

I talked with my sister about coping day to day, and she, like many others reminded me that this is temporary. However, I struggle with that becuase I believe in living fully in the moment. But this moment is not fun! I don’t like this moment, this healing, this recovery, this coping.

So, how do I reconcile?

Distractions help. Walk the lake. What else? Clean the house, make some plans, read good books. Listen to good music. Try not to feel sorry for oneself. Ugh, as me and my sister-in-law discussed one day, it’s really a challenge to stay cheerful. There is alot that simply is not cheerful. But, I am going to try. I will put one foot in front of the other and plug on. There is so much I have to be thankful for:

My husband loves me;
My beautiful daughter adores and cares for me;
I have good insurance coverage;
I have a good job that supports;
People at work genuinely care for me;
I live in a big old funky house that is ours;
House is getting painted and new wiring this summer;
I have terrific friends who will bend over backwards to help me;
My city is magnificent and fun;
I can walk everywhere in my neighborhood and I never have to drive;
I have everything I need;
I know all my neighbors;
Oh, and, I have fabulous legs!

Thursday, July 31 ~ Labor of Love

My dear sister-in-law has been with me the past three days and two nights. She has cooked, cleaned, sorted, putzed and waited upon me hand and foot. It has been an amazing display of love, patience and generosity. I am eternally grateful. Thank you Leslie.

Today is one week post-op. I am eating everything, anything, with no problem. I eat small amounts of things and it all seems to go down okay. I have a little bit of repulsion toward soft mushy foods. This will pass, but I haven’t done my protien shakes in a few days. My insides feel odd. There is no painful cramping like before and no sitting on the toilet for hours. Instead, this odd gaseous kind of feeling sort of in my tummy. Cannot determine if it is indeed gas or my tummy or what. Its just a little nauseous and soda crackers seem to help. I don’t like the iliestomy bag hanging down. It always gets a little puffy and poofs out. Plus, Puffer is noisy! Ugh! I have decreased the Alleve now and seem to have no pain at the incision site. Amazing.

Thank you Mark and Megan for the shout out! Yes I have officially joined the No Colon Cardholders Club!. Hey, but what do you think about ” ; ” ??? I’ve gotten lots a jokes about that as well! LOL!

Wednesday, July 30, 2008 ~ The Story of Puffer (My Stoma)

Not sure if you caught it but my stoma is named “Puffer”. Puffer came to be when the the medical staff kept asking, have you passed gas? Well, no. How could I have, with no colon? The first sensation I noticed early on in the wee hours of the morning, while still dark I felt dear stoma going ‘puff, puff’. It was so cute, just like the little blow hole of a whale. Puffer!

On my first nite home, I explained the whole operation to my dear (young adult) daughter and husband. Although they understood it before, now that it was over and actually done, they had many questions and misconceptions. It was a terrific close family moment, where we all got our fears and concerns out and things felt very relieved afterwards. I actually drew this cute little picture of my belly, belly button with incision down below, and stoma “Puffer”. The picture really helped.

Today is day two at home. I am off the narcotics now and the pain sensations are really just that – odd aches and movements deep within the tissues of my abdomen. Puffer is emitting product nicely. Have had to discharge it several times today. We are developing an intimate relationship. Its difficult. I am not real comfortable yet with this tender close knowledge of my body’s waste. It makes me not want to eat. Also, my appetite is all wierded out. Not sure if its the drugs, or if I don’t yet have the right balance in food or what.

Food eaten today:
Half slice sourdough toast with scrambled egg;
orange juice; apple sauce; some saltine crackers;
hot tea;
tiny quiche and iced chai soy tea;
1/3 almond croissant;
small salad with grilled chicken;
few bites fried potato;

Tuesday, July 29, 2008 ~ Healing, recovery, being at home

I arrived home last night about 8:30 pm. I slept through the night til about 8:30 this morning. I feel good. I have some abdominal pain but am still sedated with Percoset every six hours. I am up walking around. Am currently eating some mushy out-of-the-box mac and cheese. Have no idea how it will process, but it’s helping with some slight nausea I was experiencing. I have been so anxious to get here and post. There is so much I want to share.

Here is a brief synopsis of my days in the hospital:
Thursday, Day 1 Surgery
Surgery successful; Stood up to brush my teeth; slept the rest of the day and night.
Friday, Day 2 Post Surgery
Walked the hospital hall way with assistance about three times; moved to a new quieter room; groggy still; stopped pushing the pain button;
Saturday, Day 3 Post SurgeryWalked the hallway unassisted; liver produces green bile (IMPORTANT accomplishment after surgery!); had a melt down with reality at one point. However, the resident doctor Jennife was terrific in her positive upbeat support. Reminded me that “My Ulcerative Colitis is gone forever!” Upgraded from clear liquids to full liquids; slept most of the day when not eating or walking; named my stoma “Puffer”.
Sunday, Day 4 Post Surgery
Walked the hallways alot; met with docs – chief resident and general anathesiast; had tapioca pudding; The two docs conflicted over when to remove epidural. This seemed more like a power struggle between them rather than what right for the patient. Not good. I ended up being on pill meds and the intravaneous.
Monday, Day 5 Post Surgery
Epidural and catheter removed in the morning. What a relief! Docs showed up in the afternoon during my hallway laps to say I could go home if I wanted. Fine by me! After four nights, going home. It felt right to me. I called Tad.