Friday, May 30, 2014

the waiting game...

The waiting game, a game that we all participate and play in whether it be in a doctor's office or hospital, at the pharmacy while waiting on a prescription to be filled, at home while we wait for our tests results or by the phone waiting for our doctor to call us back. Let's not even talk about insurance companies and having to wait When you have a chronic illness, learning to wait and be patient becomes mandatory. Things just don't happen. You have to be patient whether you like it or not.

Whenever I went to my first GI appointment with my GI doctor who is also a motility specialist, I knew it would be a long wait because of who he is. I believe I waited close to three hours but in return I got to spend an hour with him discussing my case and the "plan" of action with how about we would go about dealing with my possible GP if the tests confirmed. The waiting was totally worth it.

Way back in the day, I remember I waited forever in the ER waiting room. I had never really been to the ER for my GP. This was an ER in a hospital. Weren't things suppose to move a little faster? And not to mention I was miserable and you know when you feel that bad you have blinders on and all you can focus on at that moment is you and keeping yourself together. Who wants to throw up in the middle of the waiting room? Not me. I still hadn't adjusted to being familiar with the hospital setting including the smells. It was a rough time. For those of you who have GP you know how it goes once you have a bed in the ER; you have to explain to the ER doctors that you actually have GP and that your legitimate. You're not lying and seeking out attention or pain medications. You know how it goes.

When it comes to waiting on test results, ugh. There is no way around it. Time always seems to go by so slowly and just drag. Whether you're getting your results in the mail, by person or phone, you want to know your results so you can deal with whatever the results may be and proceed from there. Or at least I do...

The hardest thing I have trouble dealing with when it comes to waiting is dealing with phone calls.  It never fails that whenever I leave a message for my doctor to call me back especially on a Friday, I will miss that phone call and have to wait the whole weekend to see what the phone call pertained too. Voicemail never does the call any justice. It simply drives me insane.

When it comes to insurance companies, whether you're needing a prior authorization on a prescription or you're needing disability coverage, waiting is bound to happen. Nothing happens automatically. Don't get me wrong, it would be a perfect world if we didn't have to wait all the time but I don't see that happening anytime soon unfortunately. ;)

Wednesday, May 28, 2014

salt cravings...

Salt or sugar, something we as humans crave. When it comes to food especially junk food, you either love those salty foods such as chips, popcorn or pretzels or you tend to have a sweet tooth and choose foods that are sugary and sweet such as cakes, candy or cookies. I use to be more of a sugary person. Gummy candies were my favorite. However things have changed and I crave salt like crazy. I simply can't get enough.

To put into perspective how bad my salt consumption and cravings have become, when I got married, I bought a big salt grinder. I'm currently on my second salt grinder. I may have a problem considering that my husband doesn't use any salt from those grinders.

Before my colectomy, I didn't crave salt. However post colectomy, I noticed that I was craving salt. After my ileostomy surgery, my cravings became very intense especially after my clean outs. The colon is responsible for removing any waste from our bodies made up from food, nutrients, salt and water. Since I have an ileostomy and my remaining eight inches of colon isn't connected to my small intestines, my GI tract doesn't function as it should. Since I have Gastroparesis, I have a hard time absorbing my nutrients. Throw in several clean outs a week and it just complicates things even more. Gastroparesis and ostomy patients can dehydrate quickly especially in heat. For me, output of more than 1000cc/ml per day will dehydrate me. On a day when I am cleaning out I may have anywhere between 3000 - 4000 cc/ml per day. It all just depends on how effective and well my clean out is going. On really "good" clean out day when I have a high output, I will become so dehydrated that I will begin to throw up. A few clean outs ago, almost every time I got up and moved, I threw up. The nausea was horrible. It was all from being too dehydrated. What is bad for me personally is once I get to that point, I can't rehydrate myself quick enough. I get horrible headaches from this. I hardly got off the couch the next day. This all could have been avoided if I would have not been so stubborn and just went to the ER and got an IV.

So the after effect of all of this is that I crave salt. The last time I talked to my doctor about this, they were fine with it. My blood pressure is perfectly fine. When you crave salt, it can mean many things such as dehydration, a lack in minerals in your body or under active adrenal glands. In my case, it is a combination of both needing hydration and minerals due to my GP diet and lifestyle.

After a clean out, a way I rehydrate and replenish myself is by drinking a lot of liquids as well as eating salty foods that go along with my GP diet. (I put salt on almost everything. I know, it's horrible.) To give an idea of how much liquid I drink (which is mostly water), the other night at dinner I drank 32 ounces of water over an hour or so. I felt huge and bloated but I need that amount of liquid with my meals in an attempt to keep everything moving in between clean outs as well as for my hydration. As I said, I drink a lot of liquids. Before my ileostomy surgery, I could not have tolerated this much liquid due to my GP. I still have a hard time but I have just learned how to pace myself and drink, drink, drink all in the name of my ostomy. (Smiling...)

There are all different types of products out there to help with hydration. Sports drinks help balance your electrolytes but they have higher sugar contents and I personally have to watch those. Smart water claims to have electrolytes in their water to help balance your electrolytes. Certain foods naturally contain water such as celery, cucumber and watermelon which aren't all necessarily GP friendly. It just depends on your GI tract and diet and what works best for you. When all else fails, there is always the ER where you can get an IV for hydration.

Monday, May 26, 2014

inspirational quotes and motivation...

As people with health conditions, we all go through times where we are challenged by what our health conditions may do to us physically. What we are able to do today isn't what we were able to _____ many years ago, you fill in the blank. Depending on how we feel physically can play on role on our emotional feelings as well. It all depends on the situation. If I'm prepping for a test that requires me to miss a week of my medication especially those nausea and clean out medications that I can't function without as well as live on a liquid diet, HELLO! I'm going to be bloated, miserable, nauseous, and weak. I'm not going to be able to eat much less get off the couch. Emotionally I am not going to be in a good place because my attitude and outlook is going to stink at times. I learned shortly after realizing that my diagnosis was "here to stay" that I couldn't click my heels like Dorothy in the Wizard of Oz and go back. I started putting up my favorite Bible verses, quotes and sayings around my home and place of employment (when I worked) to just help remind me of what my personal focus is. Don't get me wrong, I still have my days where I have set backs just like everyone else but I'm working on it.

"My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever."    Psalm 73:26

This is my favorite Bible verse. I have had it in my office cube at work, my bedroom mirror, my refrigerator even on my hospital room nurses information board. I find so much comfort and encouragement from this verse. Regardless to what my come and happen to me, God will be my strength.

"Never, Never, Never Give Up!"   - Winston Churchill

I love this quote. It's simply but straight to the point. I am determined and stubborn and on those bad days when I want to say "Okay, I've had a enough!" I reread this quote and it reminds me of my some of my goals and principles as a person.

"May you trust God that you are exactly where you are meant to be."

If I would have had a dollar for every time I have read that.... I'm just saying.

This just reassures me. I am where I am today for a reason and I don't know why. Hopefully one day people won't have to experience what I've dealt with medically but if I can help one person, I'm okay with that. I don't consider my disease a punishment in anyway. It has made me look at life in a different way than I use too.

"If you can learn from your suffering, and really come to understand the lesson you were taught, you might be able to help someone else who's now in the phase you may have just completed. Maybe that's what it's all about after all..."   - Kimberly Stegman-Dieckmann

Kimberly is my sweet friend and the founder of The Gastroparesis Awareness Campaign Organization. When I was first finding my footing with my diagnosis as well as learning the ropes with cleaning out Kimberly showed me the way. She answered countless emails, questions and texts. She explained to me how to live with a disease such as Gastroparesis and have a different outlook than what was expected. I will always be thankful to her for that.

Tuesday, May 13, 2014

ileostomy decisions...

It is hard to believe that is has been a little over a year since I had my ileostomy surgery. Looking back that was such a hard decision to make and go through. I remember going to meet with my surgeon and hearing that an ileostomy was basically my last option surgically next to a transplant which wasn't possible at that time. With the frequency of the clean outs combined with the large amount of medications needed, I was basically headed towards the end of a cliff. Something would eventually have to be done; I couldn't continue to live how I was currently living at the time. The downfall to having the ileostomy surgery was my gastroparesis and decreased motility in my intestines due to the paralysis was that there would be no knowing as to if the surgery would work. Sitting in that surgical consultation, the room was honestly spinning. I knew years before that my GP would affect me in greater ways but I never expected to be hearing news such as this. I had just gone in for another colectomy. I just wanted to have the remaining eight inches of my colon removed and have my small intestines connected to my rectum or even have a J-Pouch created. I was not ready for this. Ostomies were unattractive, foreign and just scary to me.

Over the next couple of weeks, I struggled with finding peace about having the surgery. How would I personally deal with living with an ostomy? How would my life change? How would I look? How would other people perceive me? It was one of the hardest times in my life. When making the decision to have my colectomy, I immediately had a peace about the surgery but I didn't have a peace about this. Finally, finally, I had a peace about this surgery. I realized that it wouldn't change who I am. I would still be the same person; I would just have an ostomy bag attached to my side. Since then, I have actually grown a bit as a person. Going through that whole experience made me stronger and less worrisome about others opinions. 

Along the way, I have encountered some negative comments about my ostomy and how I dress which I suppose is just par for the course. Just like in life, with any disease, you have to grow "thicker skin" which isn't always easy and can take quite some time. You just have to look the other way and just things go. When I was being fitted for my ostomy, they explained that I would live in athletic wear because it would be the only thing that was comfortable. They weren't kidding. Jeans, khakis, dress pants are all painful for me now. Because I am a short person and have much of a waist, so there isn't a lot of room so when I sit down. My clothing bunches up under my ostomy and causes pain and can eventually result in havoc in the end. It simply isn't worth it most times. Athletic pants fit right because I can adjust them and they are soft. I live in loose t-shirts or sweatshirts because they are long enough to cover my ostomy (I don't tuck my ostomy into my pants) and they allow room for bloating which is a multiple times a day occurrence with my GP. Originally my plan was to tuck my ostomy into my pants or wear a wrap. I have invested hundreds of dollars into custom wraps tailored to fit me but they are so uncomfortable for me personally and I find them to be bulky. They eventually end up irritating my skin from pushing my output up under the ostomy wafer so I just leave my ostomy bag out under a camisole. The downfall is that it is more visible but it saves my skin and is ten times easier not to mention more comfortable. I have received comments that I need to dress better and more appropriate. Ostomies are offensive. It isn't true. A lot of comments come from just being uneducated about a topic and simply not knowing. When I first saw my first ostomy, it scared me. Everyone copes and deals with things differently in their own ways. 

Today I am completely happy and content with my ileostomy. My original plan was to leave the ostomy in place for a year to hopefully get a break from the clean outs and have it reversed in the spring of 2014. However the surgery wasn't successful and I only had a month break from cleaning out. Do I still want to reverse my ostomy? NO! It drives me crazy some days and gets in my way but it truly saved my life by buying me sometime. It actually has some perks.

As for my GP, the past month of so, I have just been all over the place. I'm being scheduled for another endoscopy with Botox. My weight has continued to stay at eighty-five pounds. I have been eating as much as I can but I just can't seem to gain any. My neurologist mentioned that since the last time she saw me right after our wedding, I was only down several pounds so she wouldn't fuss at me (my neurologist is such a cool doctor). I was sitting there thinking oh my gosh, my ostomy bag was almost full when they weighed me. She would have got me about my weight if it would have been empty. I truly got away by the skin of my teeth. 

I finally called my surgeon last week after having some bleeding after a colon spasm. During the past couple of months, the spasms have become more frequent and more painful not to nauseating. After talking with my surgeon, he explained that I basically had colitis in my remaining colon. My colon was inflammation and irritation. How did this happen when I don't even use the organ?! He called in a prescription for several enemas (Oh what fun this will be considering I thought this door was closed in my life, no more enemas. I suppose I was wrong.) that would help relieve the inflammation and irritation. The issue lies in my pelvic floor muscles. They weren't worth much when I used them due to my pelvic floor dysfunction. I have hardly used them in over a year and we all know the story about how muscles become when you don't use them. This should be an experience to say the least; I'm not looking forward to it. If the enemas don't do "their job", we're going to go down that road and remove the rest of my colon. My surgeon explained that normally it was a harder surgery but since I have already had a colectomy and ileostomy, he could do it robotically so it wouldn't be as hard. I've been giving it some thought and I am going to tough it out for as long as I can before undergoing another surgery.