Thursday, October 30, 2014

Re: Treatments

Answering a Reader:

Dear friends,

Crohn's and Colitis is a challenge to be sure, and once diagnosed many, like yourself, find themselves feverishly, and furiously searching for cures, helps, and most importantly, information about ones/loved ones recent diagnosis. I am not an expert on Crohn's, only that I understand the concerns, having been diagnosed over 35 years ago, when there was hardly a spoken word of it.  It took many years of debilitating physical suffering, before there was to be a diagnosis for what ailed my young youthful body.  

Even though research on the disease has been ongoing since 1937 when Burrill B. Crohn, an American gastroenterologist who was one of the first to describe the disease and later bear his name. Not much is understood.  Additionally, folks need to know that Crohn’s disease is not the same thing as ulcerative colitis, another type of IBD. The symptoms of these two diseases are similar, but the areas affected in the body are different. Crohn’s disease may affect any part of the gastrointestinal (GI) tract, from the mouth to the anus, but ulcerative colitis is limited to the large intestine.

Recently, I was asked whether I know anything about Fecal Transplant.  Honestly, I don't know a lot about the treatment.  If I understood correctly, they were talking about fecal microbiota transplantation (FMT or fecaltransplantation) AKA stool transplant.  What I do know is the purpose of fecal transplant is to replace good bacteria from a healthy person into an unhealthy person's bowel.  It's certainly not a new treatment. It originated in China.  The Mayo Clinic notes; 'Fecal transplant has been used in the U.S., sporadically since the 1950′s, without much regulation. It has gained popularity in the U.S. in the past few years, although experts estimate that total number of treatments to date in the U.S. remains below 500 patients.'

With that said, I always encourage my readers to do their research and discuss any and all treatments, medications, diet, exercise, life style changes, and so on with their physicians.  With every person, the disease and treatment will be different which makes this disease so cunning.  What one must remember is that there is not a 'one size fits all' treatment for those diagnosed with any IBD.  Sometimes it can take years for relief.  This is not to discourage the reader, only to encourage the reader to keep seeking, asking and be your own medical advocate.  There are many things besides medication and alternative treatments to ease discomfort.  Stress - ease up. Rest. Diet and exercise. Illuminating those foods/beverages that you know triggers a negative bodily response.
 
Even today, after 35 years living with Crohn's Disease, it's still one of those medical mysteries that is still poorly understood.  

A great site to find additional information and helps is http://www.ccfa.org

Be well,


Thursday, October 23, 2014

Don't ignore the unusual…

I will be having outpatient surgery on an area of my leg to remove skin cancer.


About a year ago, I noticed a dry patch of skin on the back of my leg. From time to time it was bother, but I ignored it. I thought it was just a bad case of eczema. A nuisance at best, and only more of an issue when it bled.  I even had my primary physician look at it a while ago, but he didn't seem to think there was any concern.  But, he recommended if it wouldn't go away I should see a Dermatologist.

At any rate, I did notice it, but then I would forget about it.  It was on the back of my leg!  Not a place I I spent much time looking at but it began to get worse so I saw a Dermatologist recently, and upon examining the area the doctor recommended performing a biopsy.  I was told the pathology report on the tissue would take about 7 working days to return results.  Instead, I received a call from their offices just a day later.  It is indeed skin cancer. I will be having Excisional Surgery on the location next month. 



Skin cancer statistics are staggering.  Every year, 3.5 million skin cancers are diagnosed in the U.S.  The type I have about 2 out of 10 people are diagnosed with every year.   Those of us diagnosed with Crohn's disease, it's important that our doctor check our skin regularly, especially if you are taking a Biologics mediation. A recently published finding suggests the inflammatory bowel disease can raise risk of melanoma. 

http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-inflammatory-bowel-disease-raises-risk-of-melanoma/

Those of us who are on Biologics, which suppress the immune system, such as Humira, in order to relieve Crohn's symptoms and keep us in remission, carry an increased risk of infection and other serious diseases.  Makes it doubly important to look for anything unusual around all health concerns.

Things to watch for:

- Changes in skin, especially a mole or a new growth.
- Skin scaling, similar to eczema, oozing or bleeding of a sore.
- A wound that is itchy, tender or painful and won't go away
- Melanoma is irregular, has uneven borders, has a variety of colors, continues to change and is larger than o.6cm.  

Moral of the story?  Should not ignore a persistent skin nuisance.  

Rejoicing in all things,
Cynthia

Thursday, July 17, 2014

Traveling

Greetings,

I had hopes of sharing our vacation travels over 11 states in 13 days as we trekked, but unfortunately, due to cell service and data issues, I never had the opportunity to share our vacation with you as it was happening, live!

Suffice to say, I think the biggest challenge over all was car time, and a few unfortunate 'rest stops' along the way!  The midwest and closer to MI, have the best Rest Stops.  Sad to stay Idaho, and Utah were the worst, over all.  Some were less than desirable, but I will say, that if you decide to make a car trip across the great US of A, prepare to make several stops along the way.  Not just for necessity sake, but for sanity sake, and to stretch the midsection and exercise the body!  

The travel out east was much more enjoyable.   The set of miles on our way home were more challenging since we made two more days stops going out, than we did coming home!  I paid for it.  I think we all did.  

But, friends, I made it!  It was far more ominous thinking about 'what might be' than what truly took place.  Because we prepared, it was an awesome experience.  Several preparations were; where to stop, and when to stop.  There are several apps online that helped us on our way, not to mention the travel ideas from Roadtrippers.  Apps included gas stops, rest stops, restaurants, etc…  

Apps we found useful:

1. Roadtrippers - Great little Road Trip Planner.
2. Yelp - Don't believe all the reviews, we found some really great places to eat along the way, less the reviews. 
3. Gas buddy - Lets you check area prices before you buy.
4. MotionX-GPS - Great GPS app for the iPhone and iPad.

Because we are not fast foodies, we stopped at 
-Subway's and -Jimmy John's, quite a few times for healthier choices, and cleaner facilities.   Both of these restaurants always have clean facilities, and healthier food choices over fast food places.  

When we had no choice but to stop along the way at Rest Stops - we took along our trusty ready made 'Rest Stop Carrying Case' stocked with travel size T.P., Seat Covers, Coleman Camp Soap (50 sheets - just add water. Works with hot and cold water, ideal for traveling, camping), and finally Antiseptic Wipes.

All in all, traveling with Chronic illnesses do not have to be a nightmare.  Plan to take your time, be prepared and plan for surprises.  

Happy Travels,



Monday, June 16, 2014

The Plan

Leaving soon . . .  And also, we're just getting started. 

Our greatest little find…  and, the neatest thing we came across, in deciding 

where to stop along the way to our final destination, making our trip more


comfortable for all, was using Roadtrippers, by definition;

'Roadtrippers is a simple and intuitive USA road trip planner. Search along a route or plan a road trip with our online trip planner for free, then sync it with your smartphone for turn-by-turn navigation. Roadtrippers is a powerful route planner, perfect as a RV trip planner or family trip planner, as it not only let’s you plan a route on the map, but seamlessly syncs your travel itinerary to turn-by-turn navigation via our iPhone app.Roadtrippers is currently perfectly equipped to help you plan a USA road trip, such as Route 66 or a Canada road trip. European road trips, Australian road trips, and other countries are coming soon!Check it out. Has a few things we'd like to see added or changed, but all in all a great help!'

Great little help, and also, there are several things we would change, or add,

but all in all, a great help with a long distance trip.  Check it out!


https://roadtrippers.comx




Friday, June 13, 2014

First Stop of the 2159mile, 32h 59m Road Trip!

Our First top starting out on our big trip east, is to the Historic site, Gold Spike (aka 'The Last Spike') at Promontory Summit, Utah, only a 5 hour drive from home, an stretch of 279.7 miles. 

History:  
May 10, 1869 the Union and Central Pacific Railroads joined their rails at Promontory Summit, Utah Territory and forged the destiny of a nation.  States  For more information about this location check out their website, noted. http://www.nps.gov/gosp/index.htm 


This first day, heading south-east, in our long travels should be a breeze. It's entirely freeway driving where stops along the way are all clearly marked.  Just in case, however, a stop is needed, where no facilities are available, like those adorable port-potties, with no amenities - just a box, I have packed travel bag with the following items; 

'Charmin To Go Travel Toilet Tissue', which are super convenient because they have a pull-out dispenser which keeps the tissue neat, and the tissue is on a roller for easy use, keeping the tissue clean and fresh.  It fits nicely in a backpack, purse, or glovebox.  It's always been perfect for many of our short road trips!  I have also included and packed, flushable wipes, travel toilet seat covers, and travel room deodorizer, and a water bottle (if no running water is available), hand sanitizer and sanitized hand wipes, all in a small decorative satchel!

No one will suspect a thing!  




Friday, June 6, 2014

Living Life More Colorful…


Friends,

Last night in a hurry I wrote this post and regretted it when I awoke and re-read what I had wrote. I was in such a hurry to get something out about our upcoming three week trek, as I had promised to you, that I really didn't take the time to thoughtful process what I wanted to share!

I noted in my previous few posts that our family are embarking on an adventure, a driving adventure across the US.  So, In just a few weeks our family will be trekking across the United States east toward the state of Michigan.

Our stops east and back are places like The Golden Spike (aka "The Last Spike"), Mount Rushmore, Crazy Horse Memorial, Homestead of Laura Ingalls Wilder, Wilderness Resort … Mackinac Island, Fort Snelling, Mall of America, Lewis and Clark Caverns… up and back, we'll have traveled through Idaho, UT, WY, SD, MN, WI IL, IN, MI, over the Great Lakes, ND, MT. Let the adventure begin!

I will admit I am a little nervous.  I have been thinking about this idea for sometime for our kids.  I remember when I was their age, and how I so enjoyed those trips with my family, and still think on those adventures with fondness.  I'd like that for our kids.  This idea is a big deal!  This idea started in my heart to see my new nephew, who will be a year old very soon.  My two are very excited too!  This idea could have fallen pretty flat in the dreaming stages if I allowed fear to enter the equation what with living with Crohn's.  But, 'all fear is a fear of loss', I've been told.   So I needed to ask my self the hard questions as to what I am afraid of losing.  There are many.  Dignity came to mind first, however, like; 'What if I lose it, or cannot find a rest stop in my moment of greatest need?'   'How will I pack the myriad of medications, especially the ones that need refrigeration?   How would I manage sleeping out in the great outdoors, and in the middle of the night need to run QUICKLY to the  nearest facility?'  

I don't have all these questions answered in my mind, yet, but I didn't want those questions, to rob me of an adventure.  

Follow me, and my family… as we sort those things out!  

Let the adventure begin!  


Getting ready!  Got my Charmin.

Wednesday, May 21, 2014

"Jacob or Bust" Road Trip! Say what…

Road Trip, friends! 

I'm planning a road trip.  A road trip across the United States. No, I'm not kidding!  I am determined it can be done.  Regardless of circumstances, and fear of the unknown. 

It's 'Jacob or Bust' folks.  A new baby boy has entered the world, and this Auntie needs to see him, again!

Jacob was born last August.  I have only seen him but once face to face.  For such a little guy, as it goes, he's quite popular with the crowd!  That is, everyone who meets him!  He is just so darn cute. He must be seen again!  And, Mr. Jacob is only a driving distance of 1,830 miles/2,945.09 kms.  Idaho to Michigan!  Not so far, right… 


Our summer trek across the states will be filled with several stops along the way.  It is a unique opportunity for our own children to see our amazing United States.  We realize there will be challenges for me traveling.  Traveling with any chronic illness can be challenging, and unique, but, what is life without challenges?  Trials, and tribulations mature us.  They grow us.  They can even help others. They soften us in the rough spots.  I am not anticipating any big issues, but we will be preparing for these challenges by making several stops along the way to stretch the legs, so to speak. I am thankful we have many comforts at our disposal, and thankful we are not traveling by covered wagon. Instead, we will be traveling by Toyota Sienna!

I am most acquainted with traveling short trips by car, and by air on lengthier trips. Logistically, air travel with inflammatory bowel disease presents a very 'unique' set of challenges. 
In fact, just recently coming back from a trip, while standing in line at Airport Security I began to feel an attack come on!  I began to panic a bit as I knew I needed to find a respite, and soon!  I was stuck in line behind several very challenged individuals with physical disabilities.  One lady with a neck brace.  Another with rods in her back, and yet another in a wheel chair!  I knew each person would need special attention, which would only take more time, keeping me from getting to where I HAD to GO!  I also needed to manage to get my items in the bins, take my shoes off, and load my carry on items to the conveyor belt.  I was dying!  It was taking so long just to get through to the other side where I knew a restroom would be at my disposal. I told myself in order to calm my body, 'BREATH.' I couldn't run forward, and I couldn't escape back.  All I could do was BREATH!  Happy to say, I made it!  

So maybe some of you are asking; 'What about ground travel?'  Ground travel can also present its own very 'unique' challenges.  Such as, where's the next lavatory within miles of a town, where there is no town within miles?  What about ground travel?  Well… 

… follow me, and my precious family, the next several weeks as we plan, prepare, and pack  for a trip of a life time across the Northern United States.

Open up your Atlas, it's going to be a bumpy… ride.

Cynthia