A Plan for a Plan

Planning for an activity away from home and specifically in a location you're not sure about the access to restrooms, is tiring and difficult at times. Yet, I never really thought about my thinking about that.
For those living with bowel and bladder disorders, this is a huge concern. I feel as though my life revolves a toilet. What a disgusting thing for my life to revolve around.

From small to big plans, that toilet is forever beckoning. For instance:
Every outing I want to go on, every activity I want to do, my immediate thought is restroom access.
For the 4th of July, my family and I went to a local park to enjoy an evening of music and fireworks. So all day I watched my food intake, packed up my porta-potty survival kit, and went to the restroom several times right before leaving the house. Then upon arriving, again I tried to limit my food and fluid intake and resist the need to use the restroom for as long as I could. I enjoyed my evening but at every turn, that toilet crept into my thoughts.
My husband and I will be purchasing raw land to build on in a few years. I'm very excited about this new adventure. I'm even looking forward to maintaining the property until we are ready to build, so I'm planning my mowing trips so that I can keep it under control for when we do build and my thoughts stop dead in their tracks and I begin to worry about being able to mow when there won't be any restrooms easily accessible due to location. Again that toilet is calling!
I traveled to Europe with my family a few years ago (and would like to again in the future) and restroom access was a giant concern and issue! Some places wouldn't allow you to use restrooms, some activities couldn't stop for a bathroom break for hours, some activities I couldn't even do because of bowel issues. That damn toilet!

So what do we do?
Sit at home, spending all our time with that infuriating yet so necessary and ingenious invention or do we go out, take the risk and enjoy what we can?

Because the truth is, as much as it sucks and sometimes hurts....if we let it stop us from doing at least part of what we want, then it will take complete control of our lives and we'll spiral to an abyss. And an abyss is very hard to climb out of, trust me.
It's like with any illness, we have to accommodate it. Some things we're going to have to change, but we don't have to change everything. So instead of getting to mow until it's done, I'll have to mow for a while and take a 20 minute drive for a restroom break before I really need one.
I can still travel but I'll need to plan on needing restroom access, know when I should take a break before I need the break, and do the activities I can without fretting about it.
But if I plan for that, then I can still enjoy and complete my other plans. And so can you.

I'll Cry if I Want To

It's my party and I'll cry if I want to ... remember that song? I'm sort of in this mood as I look forward to my birthday during the upcoming month. I'll be almost 30.
No, that's not what has me in a funk.

I wasn't supposed to live past age 9 or 10. When I was 17 I told my mother goodbye as I readied myself for approaching death and my doctor hoped to see me walk into her office the following week. I whole heartedly believed I would die before my 22nd birthday.

So each year on my birthday I have a "woah!" moment and I'm reminded that I made it to another year.
This can be a very strong emotion for individuals as they come to the realization that they have cheated death and can serve as a strong motivation and inspiration for improved health, life and dreams. For others it can become a thrill ride, a game, an adrenaline rush for finding the next adventure to beat the odds.

Another reason is that my best friend and I share the same birthday, who is also well known to the ostomy and bowel disorders circles. However, due to his health struggles the battle became too unbearable and he took his own life to end the pain. I understood his decision the moment I learned of the news, as much as it pained me to have lost him.

The loss of friends and even self is far too common in these circles and is a hard reality to accept. Nevertheless, it is a reality that we each must make peace with or we'll lose ourselves mentally and emotionally first.
So make the acknowledgement, share the emotion, and live your life to the fullest. Cliche, right? Perhaps, but do it anyway. Start checking things off your bucket list, take care of yourself physically and emotionally, share with others and learn from them, care for the well being of others and contribute to humanity, locally or globally. At times the small picture is not pretty, remember to look at the whole picture and that a moment in time, only lasts a moment.

The Short of It

I found a new website, I hadn't heard anything about it in the UOAA circles. I haven't explored all it has to offer, but have found it promising thus far.
I love finding new resources, whether it's for personal or business use. It can be addicting, the thrill of the hunt for helpful resources and the rush of victory knowing that you've found a gem that will be a great asset to you or others. I've had to spend a large amount of time researching resources for clients I work with. It provides a great sense of satisfaction locating, pursuing, and obtaining a community resource for someone; knowing that you're helping to make a difference in the lives of others.
I believe this new website will be able to do just that, to serve as a unique educational and supportive resource.

Would you like me to get to the short of it now?
Okay, okay....it is Short Bowel Support!
This is a website specifically for those suffering from Short Bowel Syndrome (SBS). It offers information about SBS and the body, treatment, lifestyle support, resources and community forums.
One thing I've found very interesting is the SBS survey that is available for visitors to complete.
The Survey Results help us to view the demographics of individuals with SBS so that we may better understand who is most at risk and the primary causes of SBS.
For instance, would you have suspected that the majority of SBS sufferers that completed the survey are women ages 18-35, followed by ages 46-55? I don't know what this boils down to other than I find it interesting. At least it may be helpful for focusing education, support, and treatment to those most affected.

This community support and information would have been helpful to me in high school during my most trying period with SBS. I tried over the counter medications that worked for a short period of time and then the narcotic strength Lomotil until my body went haywire, as discussed in A Look Back. I even changed to the Sub Q injection medication Sandostatin until I had built up such a strong allergy to the medication that I was unable to move my elbow until discontinuing the medication and all traces of the Sandostatin were out of my body. For almost a year, this combination of medications was not effective for me. Slowly but surely, I was able to only use the Lomotil and to reduce my dosage to 4 pills a day from 8. With this amount, with consideration of diet, the uncontrolled is now controlled.

I look forward to exploring the Short Bowel Support's website further, I hope you will as well.

Medication Roulette

I had my routine follow up appointment this week with my GI. My appointments are typically routine now, I get my list of blood labs and UA completed the week before, review my labs at my appointment and am reminded about the importance of taking all my medications as prescribed and then we catch up on my personal life.
My medication list has been allowed to be significantly shortened from what it was previously. I still have a drawer that is solely for my medication bottles, this is indeed much better than the cabinet that was devoted to my medications for years. Some medications I no longer require, some my doctor has given up on me taking as directed, and others I take religiously without fail.

Since my last appointment in January, I decided to play a game of roulette with my B-12. I am supposed to take 2 cc twice a week of B-12. Now have I done this since living on my own for the last 4-5 years? No, of course not. Half the time I forget, half the time I don't want to remind my husband to give me my shots.
But this time, I willingly and knowingly decided to forgo my B-12 shots until June in order to see how much I actually did need B-12. The longer I went without my b-12 and the longer I went without any symptoms of fatigue from lack of B-12, the more I was determined to see my b-12 temper tantrum experiment through to the end.
In January my B-12 was in the 620-650 area, in June it was 234. Granted, I also have discovered that if I take my prescribed b-12 shots two nights before getting lab work done, then my b-12 appears nicely elevated and gives the illusion that I am following my doctor's orders without fail.

A lesson is learned each time we play roulette with our health.
Sometimes we win, sometimes we break even, and sometimes we lose our shirts and pants and are given a hospital gown.

A Look Back

As I prepare for my routine follow up with my GI this week, I look back on how my health once was. Each appointment, my blood labs and UA are reviewed. I'm usually never within range for several electrolytes, but my labs are still better than what they once were. During the years after my surgery for my straight pull-thru, I battled the odds with my out of control electrolytes. I had weekly or more frequent appointments with my GI to review my labs in order determine if I needed to be hospitalized again just yet and to review any recent tests I had underwent. My labs included a sodium as low as 111 (should have had a brain seizure), potassium as low as 1.9 (should have had a heart attack), protein as low as 3, low magnesium and b-12, hemoglobin as low as 4. My medications included potassium, sodium tablets and drinks (spoons of salt in a one ounce cup to be swallowed 3 x day), magnesium, iron, polyp growth reducers, bowel control pills and shots, pain medications, protein pills and foods (shakes, bars, and whatever else my mother could cram in me. Ick!) and of course b-12 shots. I may be forgetting some, as you're aware memories tend to blur when dealing with health events.
I had a team of specialists completing tests and consulting with my doctor. My doctor consulted other specialists around the world and I even traveled out of state for continued testing to try to determine what was causing my out of control electrolytes. And oh were some of the tests dreadful, especially when they were completed repeatedly! Everything from simple x-rays to scans with rectal tubes inserted for contrast to be seen in my cavity (this was the most painful) and even making my blood radioactive and injecting the radioactive blood back into my body. After a year, it was decided I had to undergo exploratory surgery as my lost option. It was during the exploratory surgery that it was discovered that I had an intestinal stricture from excessive scar tissue and a hole in my intestine from an ulcer. You see, the stricture made bowel control and nutrient absorption virtually impossible. Stool was unable to pass through the stricture resulting in extreme pain and constipation until I involuntarily vomited, which released the pressure allowing stool to pass through the stricture. Only it wouldn't stop, because there was literally a liter or more of liquid in my intestine that was finally able to be voided. This cycle is what led to my uncontrolled electrolytes.

Scar tissue was removed and I was placed on TPN to allow the intestine hole to heal.
I also underwent hyperbaric treatments where I received 100% oxygen therapy for around 2 hours 2-3 times weekly for a couple months or more. I don't recall the full number of sessions, just that I was extremely concerned about being able to avoid using the bedpan in the hyperbaric chamber with 4-6 other people watching me. Fortunately I never had to use that bedpan, sometimes I don't know how but so grateful I made it!
After a few months of TPN only, which meant nothing by mouth not even liquid for an extended period of time, I slowly was able to begin drinking and eating foods. I started off with one ounce of ice chips once an hour, to a few sips of water every predetermined interval, to a set amount of water at every interval to being able to drink liquids regularly again. I did the same with food. I was only allowed to eat one egg, with salt or pepper only for seasoning, for breakfast everyday. Then I graduated to my breakfast egg and a small salt and peppered boiled chicken breast with a small amount of unseasoned rice for lunch. Later I was able to also have dinner, and it was the same meal as for lunch. After several weeks of this exact same menu everyday, I was able to include a little more variety. This variety came in the forms of any high protein food, mainly lean meats at every meal and several protein bars and protein shakes everyday. The protein bars and shakes were extremely harsh on my body causing unceasing severe stomach cramps and pain.
I hated eating, for weeks it was the same bland food and then when I could have some variety it was only foods that tasted awful and caused extreme pain.

Over time I had my port removed, was hospitalized on average once every 3-4 months for electrolytes and blood transfusions until 2007, when I received my last blood transfusions. My hemoglobin was 4 and I received 4 transfusions. Funny thing is, I didn't even know my hemoglobin was so low and was in complete surprise when my doctor personally called me at work that day and demanded I go straight to the hospital to be admitted. I argued with her about finishing work or classes that day, going home to pack some clothing like I did almost every other time she ordered me to be directly admitted to the hospital. Many times I would advise my professors that I would be admitted to the hospital at the end of class for "internal bleeding" (nicest and simplest way to say 'uncontrollable bloody stools' I could think of) for an undetermined amount of time and would return to class as soon as I was released. I learned over time that others thought I was crazy for not directly going to the hospital as instructed by my doctor. And this last hospitalization, my doctor was not allowing any room for my day's agenda.

I've been very blessed since then, although its a never ending battle, I'm able to maintain my electrolytes well enough to not require hospitalization. I hope my lucky streak will not break for decades to come.