To Keep My Mouth Shut

I don't think I'll ever learn when to keep my mouth shut. There are so many times I wish I had for my sake. We need to listen to our bodies, especially when our body is screaming at us! Our body knows what it needs, we just need to listen.

I try not to drink anything close to or after bed because it upsets my stomach and causes bloating, gas, and pain all night long. Instead of getting up about three times during the night like usual, when I drink before our after bed I end up being up and down close to eight times during the night! Last night was one of those nights and I knew better but that cold liquid kept calling me. I'm probably dehydrated at night because of the SBS, which is why it's so tempting to take a drink at night.

 In the Evils of Food I discussed the challenges I have with food and activity. I also have a hard time listening when I need to not eat or stop eating. I had lunch today and shortly after my body rid me I shouldn't have eaten, I should have just waited. After almost six hours my stomach is finally reducing in level of pain and discomfort. There are many times that I ignore warning signs and keep eating because the food tastes so good or I think I'm still hungry and then I end up with a SBS flare up within about an hour later. For a long period I wasn't able to eat any ethnic foods, they were too rich for me and I experienced severe bloating and pain for the remainder of the day. For several years I was devout about avoiding ethnic foods in order to prevent such occurrences and over time my body began to recover from the surgery traumas and to adapt to more foods thereby allowing me to have more of a varied diet.

The way our bodies are today isn't how they will be forever. Our bodies change and adapt and even regress. The key is to adapt with our bodies and to listen to what our bodies need in order to enjoy life without unnecessary pain and discomfort.

Away from Home

For the Memorial Holiday we went on a camping trip and while preparing for our holiday getaway there were many concerns to account for in an attempt to allow for the most enjoyable trip.
Anytime I want to participate in physical activities, particularly away from home, I must consider a number of factors such as food, restroom access, breaks and the amount of physical activity. Each of these contribute to my health, severity of bothersome symptoms, and level of activity.

In Evils of Food, I discussed all the concerns surrounding food and how food affects my daily life. For our camping trip, I tried to stay away from just the usual camp foods of hamburgers and hotdogs as these foods are very greasy and almost always cause a SBS flare up. One evening we had grilled chicken and vegetables with a rice mixture. But even for this healthy meal, I still had to consider which vegetables to have as some vegetables such as fried potatoes are typically upsetting. I relented for one of our  lunches to having Mexican food. I was able to combat the SBS flare up into a mild flare up by taking an extra Lomotil  in the late afternoon, being careful of the timing in order to prevent an adverse side effect of extreme constipation if taken too late in the evening thereby altering the usual satisfactory effectiveness of my daily Lomotil on the following day. If I took an extra Lomotil too late, it would still be in effect the next morning thereby altering my whole medication schedule for the next day resulting in too much binding. Later that evening we made Smores, I had to limit myself to 1 Smore as another one would have pushed my intestine over edge especially after a Mexican lunch.

Restroom access is an absolute concern for any outing away from home.  In Access Denied, the ongoing concens and fears of being denied restroom access and restroom restrictions were discussed. When we reserved our camp site, I made sure to reserve a site that was close to restrooms in order to reduce wait time when a restroom was necessary. Even with having a restroom within 100 - 200 feet, at night I had to drive to the restroom in order to arrive in time and to reduce the amount of physical activity that inevitably increases SBS.  At times I even considered sleeping upright in the car parked at the restrooms during the nights but after 3 trips a night, I was able to endure until morning.

I also have to take care to watch my activity as movement increases my SBS and is futher complicated by restroom accessibility. There were many nature trails and hiking that we could embark upon and that I would have loved to have completed, but once again I had to mind the amount of activity and the proximity to a restroom in order to prevent SBS and accompanying misery. Even to go for a swim takes careful consideration of the timing of eating, walking to the swim area and the length of time between preparing for swimming and actually going swimming. The planning and participation of activities also depends on the severity of bothersome symptoms, if only slightly bothersome I'm able to enjoy activities for a longer time period and a fuller range of activities. However, if symptoms are severe then I'm rather limited to sitting still with little food or fluid intake or will be faced with increased SBS symptoms.

None of these concerns stopped me from enjoying or participating in activities on our camping trip, I just simply had to be aware of the possible side effects so that I could plan accordingly which allowed me to make decisions and alter activities to reduce the risk of such side effects for a more enjoyable trip.

I can't think of any activities that I haven't been able to partcipate in in some way because of my health.
Knowing our bodies and how they react to varying situations is vital for our survival. By being able to predict based on previous experiences, I'm able to make decisions to allow for optimal activity participation and comfortability.

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.

Evils of Food

There are so many activities and hobbies that I enjoy that I want to participate in but sometimes I just can't. Sometimes walking  inside from the car is a difficult task in itself much less any real physically strenuous activity.
The evils of food, that wonderful tasting, life preserving particles of food create infuriating, excruciating obstacles. How I hate thou!
Due to having a total colectomy and the majority of my small intestine removed, I have Short Bowel Syndrome and must take medicine to help keep my stomach and bowel calm and controlled in order to function. In addition to SBS issues, food also causes severe stomach pain, cramping, and a delightful soundtrack of very loud stomach rumblings that you can even see move across my stomach like some alien life form trying to break forth from my abdomen. Granted, the rumblings and pain have improved some since the subsequent years after my last two surgeries. My stomach noises could easily be heard across a very large room and once caused my professor to literally jump in the air in fright. I previously absolutely could not allow myself to eat any ethnic foods due to debilitating pain for the period of 1-2 days. Now I am able to eat a variety of foods as long as I'm wise about my intake.

My itinerary isn't planned out by what I want to do but what I think I will be able to do, depending on how my stomach and intestine is reacting to the food I've eaten. And not just the food I've eaten recently or even anytime during that day,  but what I've eaten the day before. You see, there are an extreme amount of variables related to food that affect my body and it's performance. I must consider:

1. How do I feel the day before the activity
2. What did I eat the day before the activity - best to eat something light and small
3. Am I having a lot of stomach pain and cramping
4. What time do I need to wake up in the morning in order to allow my stomach/bowel medicine to start to work
5. Mustn't eat breakfast if it can be helped
6. If my medicine still hasn't started working, I must weigh the benefit vs the harm of eating breakfast as sometimes breakfast will cause my medicine to kick in but other times it will make my bowel worse thus the debate
7. Don't eat anything else until after the activity and drink very little fluids until afterwards
8. Stand and walk as little as possible until activity has started
9. Take sitting breaks as frequent and as long as possible during activity in order to prolong ability to participate in activity

If any of these variables come into play, the activity is frequently very difficult to participate in and enjoy. 

I need to make a distinction, that my diet habits to help control my health issues and to feel good are not bound by the same diet recommendations of Crohn's and Ulcerative Colitis. 

Those with Crohn's and UC frequently are recommended to following certain diet protocols as certain foods will increase or agitate inflammation causing symptoms to worsen. 

For me, food in general is upsetting to my body. I feel my very best when I don't eat. When I don't eat I am not struck with stomach pain and cramps from eating or SBS issues. Only problems are that I really enjoy the taste of food and one must eat to survive. 

So I try to eat light, non-greasy, small portion foods whenever possible as these do not upset my stomach and bowel as much as a heavy, large meal does. 

I don't know if there is another that experiences the same issues with food in the same way as I do, although I imagine it is similar to Crohn's and UC flare ups. But either way, it makes the day very hard to plan.