Not just another statistic

I’ve been quiet for a while now and I wish I could say my silence is because I was so busy with life and doing so well with treatments, had adjusted to my ileostomy beautifully, that I simply didn’t have time to write.  Unfortunately, that isn’t what happened.  I nearly became just another statistic in this fight against chronic illness.  Too many of us have read the obituaries of others with Crohn’s Disease and Ulcerative Colitis that are supposed to be life-altering but not necessarily fatal.  Nearly all of those obits say the person died of “complications” surrounding their disease, not the disease itself.  Is there a difference, really?  Yes, there is.  Every fact sheet I can find says that although there is a higher rate of colorectal cancer and some other cancers in patients like us, none recognize the deaths from the increased risks associated with surgeries, drugs, etc.  Under complications you will find things like eye irritation or mouth sores but not complications that might lead to death or needing an organ transplant.

http://www.ccfa.org/resources/facts-about-inflammatory.html

That’s where I found myself these last two years, fighting, struggling and living day to day with those complications.  What started out in April, 2014 planned as a relatively simple surgery turned into a complicated surgery with 10 day hospital stay after more than one “hiccup”.  Things snowballed and 2014 turned into the year of nine hospital stays, two major surgeries, two minor surgeries, four other surgical procedures, four different antibiotic resistant infections, three picc lines, seven CT scans, stays in the ICU, acute care unit and telemetry unit.  So many antibiotics and tests in so many different departments!  Then there was the home health care nurse and physical therapist and insurance changes, not to mention drug changes.  It was all completely overwhelming and unbelievable, even while I was there, living it.

I spent 2015 trying to get some semblance of my health and life back together.  I’d been left barely able to sit up, not able to walk through the grocery store and in major pain.  Fear crept in.   Getting back on my feet enough to simply dress, eat, nap, make some dinner with my family or go out for a meal has taken a lot of work.  I have panic attacks over everything and nothing.

When I started this blog, I wanted to help others, raise awareness and hopefully let others know that you could do this.  You could still live in spite of chronic illness.  Now I need to know that myself again.   It’s time for me to tell the whole truth of all those complications, even if they are ugly and might not be very inspiring, because in the end, I survived.  Knowledge is still power.  Knowing what can happen, why it happens and what we can do about it may help someone else

Stay tuned . . . 

A few weeks before the 1st surgery in 2014.  I told everyone I was having "just a
little surgery" and made plans for a girls lunch in another month or so.  I had no idea
the dangers ahead or the changes in store.

Technology

Ah, technology . . . where would I be without you?  Confused, scared, feeling alone and probably in more pain is where I suspect I would be without technology.  Social media and Dr. Google both get a bad rap for many things these days but for learning about and connecting with others with chronic illness, they really are amazing tools.

In the first days of my illness, I had no idea how to cope or what might happen to me.  Just one symptom, vertigo, left me feeling completely isolated.  I found a group for people with vertigo and suddenly I was no longer alone.  The tests were no longer overwhelming or scary.  Someone else had already been there before me and had lived.  Imagine that! 

Next I received the psoriatic arthritis diagnosis.  There were so many well meaning people around me who said things like, “you are too young for that,” or “oh, I’m sorry, my family member had that and had to be in a wheelchair or couldn’t use their hands.”   Isn’t that is exactly the kind of thing you want to hear when you have just been diagnosed with a chronic illness.   And the dozens and dozens of cures people me told to try, well I could probably write a book just about those alone.  I might have gone crazy.

Reputable websites helped me sort out those things.  Oh sure, there are snake oil salesman on the internet.  Like the commercial says with tongue in cheek, “they can’t put anything on the internet that isn’t true.”   I keep that in mind and stay away from websites that can be verified.  Reputable and verifiable means having a physical building or magazine or network of doctors and people.  Maybe other reputable sites that link back to it and use the information or other networks that refer you to the site.  If you have heard of the website outside of the internet, then it might be a good one.

Good websites also provide many tools.  Medication trackers, allergy trackers and information, medication guides and interactions, pain trackers and guides besides care guides for your condition or illness.  They go beyond the standard description of an illness and point you to recipes, coping and connecting with other people like you.

Then we have the simple connecting with others.   I can’t even imagine how different my life would have been had I not reached out through the web.   I think I would have spent so much more time feeling isolated and very depressed.   I made read real connections with real people through groups, message boards and now all kinds of social media.  Those connections were more valuable to me than the nurse in my doctor’s office on a daily basis.   I have made real friends.

I have a portable TENS unit that I wear to help with pain.   All my ostomy supplies are neatly listed online and I can view my previous orders, see new items and get reminders for my next order.  I have applications on my smart phone for exercises, notes, health information and medications.  We have blood pressure and blood sugar monitors.  I have used biologic medications that I injected myself that came in one-time use pre-loaded syringes, no mixing, and no drawing up necessary.  We have so much new technology exploding it’s truly incredible.  I’m always amazed with what is happening next and yet at the same time disappointed that with all the advancement there hasn’t been more progress for autoimmune diseases and chronic pain.   Researchers and biomedical engineers, please keep at it.

Click here to see a list of Links and Resources for IBD,Ostomies, Celiac Disease, Arthritis, Chronic Pain.

Ostomy Awareness

Hey y'all!  It's been a little while.  I over-extended in December (don't many of us) and have been fighting sickness since the week after Christmas.  During that time, I've thought of so many things I should be writing about.  Yesterday, this just starting flowing out.  Hope it touches some of you.

My ostomy saved my life.  Since I have no colon, I imagine I will have it for the rest of my life.  It has also drastically changed my life.  I have to think, now, about what and when I am going to eat.  If I am going out, will I be able to able to empty the bag?  Will I be in a situation where the stoma might make noise?  While my diet was in no way normal before, it is not now and will never be again.  For the rest of my life, I will have to be concerned about hydration.  I have to think about when and how much I eat before bed or I may be up all night or have leaks.  Thinking about clothing is completely different.  Not because of vanity or being concerned if the ostomy bag shows, although that is part of it but because you simply can’t have waistbands on your stoma.  Don’t get me wrong, I wouldn’t go back to how I was living before my ileostomy for anything in the world. 

It also breaks my heart to know that children have to learn to deal with all of these things.  I want them to be teens and sleep 10 or 12 hours without having to worry about emptying a bag.  I want them to eat all the popcorn, peanuts and candy they want at a movie or ballgame without worrying about a blockage or hunting the nearest restroom.  I don’t want them to have to carry a bag of supplies with them everywhere like a diaper bag.  I don’t want them to have to run to the teacher or nurse at school because they have had a leak nor have other kids laugh.

I want awareness and people to know that having a bag is not a “bad” thing.  That having an ostomy is nothing to be ashamed of or hidden.  I also want them to know the drawbacks and how it really affects us, especially children, so they will be more understanding in all those situations when we need them to be.  Those times when we need to use the handicapped bathroom.  The times when we really do need to pick a different restaurant so we can find something we can eat without having to choose the same old plain grilled chicken breast, no sides, once again.  So they will help me be discreet, if I am ever out in public and need to hurry to make a change because of a leak instead of looking on in horror.

I want better medications before ever reaching the point of needing the stoma.  Medications that don’t have awful side effects along with them like hair loss, severe fatigue, nausea, vomiting, mood swings, weight gain and loss and increased risk of cancer.

I want tests that do not rob you of any dignity you ever had and leave you feeling violated.  Tests that don’t cause you further pain and humiliation and leave you feeling sicker for days.

Most of all, I want a cure.