Sleeping (or trying) with an Ostomy

I adjusted pretty quickly and easily to my ostomy.  I’ve had my moments, like crying over chili, but for the most part I go through my day with my ostomy bag not being any more of a hassle than wearing glasses or contact lenses.  I really do sort of forget that it’s there as I go about my day.   I will forever have to pay attention to what I eat but I’m talking about the actual ostomy bag.

People get hung on that part, the bag.   Once you have adjusted, figured out your wardrobe and what you are comfortable with and wearing, the bag itself is just not that big a deal.   Yes, I know it collects waste in it.  Well guess what?  Everyone “goes”.   I empty it, wipe off the end and wash my hands.  Others “go”, wipe their hineys and wash their hands (we hope).

At night, however, it’s a different story.  Sleeping with Moxie and her bag is still a little bit like sleeping with the enemy for me.  Or maybe it’s a little like sleeping with a new baby.  I never really know what to expect.

Certain foods are supposed to be more gas producing than other.  We all know this so obviously you would want to avoid anything that causes gas before going to bed.  Imagine waking up with a balloon glued to your belly.  But sometimes, I continually wake up with that balloon glued to my belly for no reason at all!  If you roll over on that balloon, it hurts.   I do not like waking up to burp Moxie’s bag.

Some nights, for reasons I absolutely cannot figure out, I put out fluid all night long, meaning getting up over and over to go to the bathroom.  And nearly every night there is that time in the early hours when my guts decide to get active.  I’m lazy, I don’t like getting up.  So, I wake up, feel and wonder if I can get in another hour or two before I have to get out of bed.

I’m also a “tosser”.  You know, I roll over thousands of time every night; I toss the covers every which way and wake up with the bed a complete mess.  I was/am always afraid of what I was going to do during all that tossing.  And I’ve done it, too.  I’ve rolled my bag up in my nightshirt.  I’ve squished it until the edges are barely hanging on and I have scratched in my sleep until I nearly bled.  I discovered hugging a body pillow and rolling it with me helps some.

There are also the number of times I wake up because I've been on one side or the other too long, so it's hurting.  Thank you, Mr. Arthritis.

I’m still always hoping that I will find that magic combination or formula so I will know what to expect at night and can get a solid eight hours sleep without waking up either needing to pay attention to my ostomy or worried that my ostomy will need attention.

Have you found the formula?  Do you have any tips?  And if you don’t have an ostomy, is there something that you would like to know?  Please ask and I’ll share.

Arthritis, IBD, NSAIDs and Supplements

I’m one of the lucky (sarcasm) people who have both an auto-immune arthritis and IBD diagnosis but having arthritis is not uncommon for people with Crohn’s or Ulcerative Colitis.  Having some kind of digestive issue is not uncommon for those who have auto-immune arthritis.  Both are systemic diseases. 

So when you are told that you can no longer take any NSAID’s, non-steroidal anti-inflammatory drugs, just what the heck are you supposed to do?  They are incredibly hard on the digestive track but feel oh, so great for those aching joints.

Many of us suck it up and switch to acetaminophen even though it doesn’t reduce the inflammation like ibuprofen, naproxen or diclofenac.  Now, the FDA has issued new warnings on the amount of acetaminophen we should be taking, too.   

What about supplements?  Can they really reduce inflammation?  Now I’m not talking about eating five gin soaked golden raisin or cherries a day.   We’ve all been told to try something like that at one point or another.  I wish it were that simple.   Hey, five bourbon cherries might not hurt me.  No, I’m talking about supplements like fish oil, glucosamine, curcumin, capcaisin and Sam-E.  Can they really be helpful in reducing inflammation?

Some studies say they can and do.   The Arthritis Foundation has a whole Supplement Guide listing what the studies say, the recommended amount and those who should avoid certain supplements.  You can find it here

Arthritis Foundation Supplement Guide

The CCFA also discusses supplements and their benefits in this article.

CCFA Complementary and Alternative Medicine

It’s important to remember that supplements need to be treated just like any other medication.  Before trying a new supplement you need to discuss it with your doctor and pharmacist to make sure it is safe for you and doesn’t interact with any of your other medications.  You need to pay attention and watch for side effects or allergic reactions.  It may take a little longer to see the benefit from supplements but they can be for some people safely.  Some people, check with your doctor first, of course.

I checked with my doctor and besides my vitamins I have added flax oil and evening primrose oil to my daily routine for the anti-inflammatory benefit.  I am allergic to all fish and nuts so I get very little Omegas and can’t take any of the supplements derived from those products.  It took me a little bit to see some benefit but I am noticing that my joints are not as stiff and morning stiffness doesn’t last quite as long.   If I can see some improvement, then maybe my insides are showing it, too.

Open Enrollment

Open Enrollment . . . that time period when Americans are eligible to enroll in health insurance, find out what changes are going to be made to policies and what the cost differences are going to be.  You can hardly go two steps without hearing about Obamacare or the Affordable Care Act if you have been outside of your home, on the internet or had a television turned on in the last months/year.  Now, it’s open enrollment, now people are using their new insurance plans, now we get to the “meat” of the matter.

In the last few years there have been some good changes here in the US.  We’ve dropped lifetime limits on insurance policy payouts so those of us with chronic illness or catastrophic illness no longer have to worry about being cancelled because we have cost too much.  We have extended the time that young people can stay on a parent’s policy, giving them time to get established in the world.  And, at some time in the future we will have done away with pre-existing conditions clauses.  We haven’t done it, yet.  Ah, we haven’t?   I thought so, too.

For now, any policy that was in place before some month in 2010 (I believe March but am just too lazy to look that up again right now) is “grandfathered” and they may deny coverage for pre-existing conditions.  Unless, you have had coverage for the previous continuous 12 months through another policy, employer or COBRA then those plans will cover your pre-existing condition.  “Grandfathered” plans that make any significant changes to the plan or premium lose their status.   At that point, then they must comply with all the new laws.  So, not quite yet.

I personally was faced with a tough choice during open enrollment.  The plan I have had for many, many years now was through my husband’s employer.  I also work at home.  His employer made significant changes to the premiums for spousal coverage.    If you could get your insurance elsewhere, they wanted you to do so and imposed a hefty surcharge.  That left me faced with being able to pay for health insurance or being able to pay my part for medications, doctor visits, ostomy appliances, etc.  I had no choice but to change plans to the one offered by my employer.  The cost for the plan is lower but all of my doctors are not “in network”.  Now I have to decide whether to keep doctors or drop them and if I can afford the higher “out of network” price for some visits.  I have been with my rheumatologist for 10 years so I am staying even though he is out of network.   Thankfully, he is going to work with me and allow me to take lab orders to a participating provider instead of doing them in his office.

What about medications this year?  We are arguing over birth control and hearing about cases going to the Supreme Court!  This really bothers me in light of the people with chronic illness who now have to change medication because the ones they have been taking are no longer covered.  Or the people who are now paying a $125 co-pay for one month instead of $50 for the one medication that will work after they have failed so many others.  But what are we taking to the Supreme Court?   Birth control.  If we are really going to fight over something shouldn’t we be fighting over life saving and/or life altering drugs.

I left my rheumatologists office after discussing which drugs were approved for psoriatic arthritis and IBD not with a prescription but with a list of drugs.  Now I have to do homework.  He gave me his choice and which he would prefer to use for me.  I have to find out which, if any, will be covered by insurance, how much the cost for me is going to be and if I will able to afford any of these treatments.   Is this the way we want our healthcare to be?  These aren’t experimental treatments or trials.  These are biologic drugs, approved by our federal Food and Drug Administration and I have failed all other drug treatments.

At this point, if you are an average, healthy person still reading, please be thankful, each and every day for the gift of health that you have.  Do not for one minute take for granted being healthy.  It is the greatest thing you have.   

One of the hardest things about having chronic illness is not the cost to my body but the cost to my family.  It is expensive.  Our new laws have not changed that.  For my family and many others they have made it more expensive.   Over 20 years now I have been telling anyone that will listen that we need changes to our system and when we finally do have changes, they are not what I envisioned.

Also very hard, talking to others with chronic illness and having heard comments such as . . .        

• “If the Tea Party . . .”
•  “Well this President . . .”
•  “You should be happy . . .”
•  “At least now . . .”

Isn’t this the same thing as someone without chronic illness telling us to suck it up when we are in pain?  Or, if we just exercised or ate better we would be healthier?   Aren’t we in this together?  When we are hurting, no matter what the reason, we just want to feel some empathy, some sympathy.  A, “sorry you are having such a hard time getting your medication,” not, “well this party did it” or “at least someone else can get something” would be much better.  And shouldn’t we all still be working together to see that we all get the best health CARE?  We can’t do that unless we are listening to each other.

Starting the New Year with a Bang

We are five days into the new year, 2014, and I have started it with a bang.  How about y’all?

There are some old traditions in the southern United States and I enjoy keeping them.  This year, I decided that Moxie wasn’t going to stop me from enjoying my traditional New Year’s Day meal for luck and money.  I cooked ham, hoppin’ John, greens and made a banana split dessert.  Hoppin’ John, for those of you who don’t know, is blackeyed peas, rice, cheese, spices and some add tomatoes.   The saying goes, “eat poor on New Year’s, eat fat the rest of the year.”  The greens represent bills, the blackeyed pea’s coins; ham is the cheapest of meats.  And if you have an ostomy or IBD, then you know that all this food is seriously dangerous!  I was playing with fire.    My boys make fun of this traditional dinner every year while my husband and I enjoy it.   I took some simethicone before I ate the hoppin’ john and only had a few bites of the greens but still had my New Year’s Day dinner.  More simethicone before bed and thankfully, I woke up during the night when Moxie’s bag was blown up like a balloon with NO explosions.  Dinner successfully done, maybe I am starting to learn how to eat a few more things and manage.

The past few weeks have been painful, however.  My joints, back and guts have hurt.  On New Year’s Eve, you could actually feel a hard knot just below my belly button on the left side in my abdomen.  The output from my ileostomy seemed perfectly normal so I had no reason to be worried about a partial blockage.  Nothing that looked like a hernia, either, just this hard spot you could feel that was also sore to the touch.  By Thursday, I think I discovered the cause.

When you have a colectomy and keep your rectum, if someone doesn’t tell you that you will pass mucus, it will come as a big shock the first time you have the urge to “go” again when you know that you are no longer connected.   Well, the past few days, I had another shock.  I have not only had the urge to “go” passing nothing but mucus but I’ve had that urge as frequently as if I were having diarrhea again.  Sometimes something happens, and a lot of it, other times it does not.  And there was actually a time that I could not get there fast enough.  Let me tell you, I was so shocked that I wasn’t sure what to do!

I have an ileostomy!  I do not pass poo!  Yet here I have been the past few days, actually running to the bathroom because something was going to come out.  It can happen.  My abdomen is no longer so sore and the knot is no longer as hard, either.  However, my poor rear was so raw by Saturday I was actually looking for something to put on it.  With no poo coming out of it!   Never did I dream that mucus could constipate a person, break free and give you diaper rash.

I’m guessing this is not a normal circumstance and from the looks of things I probably could use an antibiotic.  When I have my insurance information again, giving the doctor a call will probably be a good idea.  I had to change and haven’t received any of the new information yet, but that’s another post.  I think I’ll call it . . .  Open Enrollment.

Life is never boring, that’s for sure.