A Love Hate Relationship with Medicine

I have a very tumultuous relationship with the medication Lomotil, generic is Lonox. This relationship changes periodically throughout the years. I take Lomotil to slow my bowel movements due to my Short Bowel Syndrome. The amount of Lomotil I require has also changed throughout the years in relation to how my body is affected by the medication.

During the 6 years that I had an ileostomy, I never took Lomotil. However, when I was able to have my ostomy reversed in high school, I required Lomotil to slow my bowels and help with my control. I started off requiring 4 pills a day and I would take these all at once in the morning and they would last throughout the day. I don't remember noticing any negative side effects such as increased pain or cramping. As that first year progressed so did my adhesions causing a stricture. I endured daily vomiting and excessive diarrhea that required surgery to remove the adhesions causing the stricture. For a period, I not only required Lomotil at maximum dose but also Sandostatin shots. But none of it worked to slow my bowels. I had a negative side effect to the Sandostatin after a while - it caused my elbow to lock. And I was forced to rely on the Lomotil by itself. Gradually throughout a year as I prepared for starting college, my body adapted once again and the Lomotil became sufficient in its job. Due to manufacturing changes, I had to change from the generic form to the brand name for continued efficiency. I managed throughout college taking the maximum dosage and remaining active, completing all the activities I wanted with minimal difficulty.

With my first full time job came new insurance that didn't cover the brand name and I was forced to change to the generic form of Lomotil. Manufacturing must have changed or my body changed once again as the generic form was now sufficient. And then I was suddenly able to decrease the amount I took until I was able to stop it all together for the most part. When I was having a particularly busy day I would take some, varying on the amount based on my activity for the day. As the year progressed with this job so did my stress level. The intense stress of my job wreaked havoc on my body and Lomotil was no longer sufficient even at maximum dosing - my Short Bowel Syndrome was out of control and I had to quit my job. I took time to heal and lessons from this job experience to better cope with future job stress without the bodily toll. Over time, I was able to stop the Lomotil once again and only take it as needed for particularly busy days.

Now, almost 10 years later and I have new problems - increased adhesions. My adhesions cause chronic pain and nausea and I hate taking Lomotil as it increases my pain while slowing my bowels. And if I take too much Lomotil for too long of a period, I risk intestinal blockage. So now I only take Lomotil when I'm having a Short Bowel flare or when I'm going to be particularly busy, such as for an outing or on vacation. I judge the day's activities and bathroom access for determining my dosage for the day. When I'm on vacation, such as on a cruise, I will take maximum dosage as I am very busy during these vacation. If I'm going on an outing, I may just take one or two pills.

The side effects of my Lomotil with my adhesions often causes me to dread outings and activity although I enjoy the activity itself. It's a hard balance to obtain between the bloating and pain that's increased by taking Lomotil with making sure to find a bathroom with any activity. My body seems to undergo periodic changes and so I await to see how it will fare over the next few years and what changes are on the horizon.

Protecting the Heart Against Anemia

I've struggled with iron deficiency anemia since I had my colon removed in June of 1995. I was soon started on iron tablets, one with every meal. This managed my iron with a low normal hemoglobin for years but I was never able to reach the desired 14-15 hemoglobin my pediatrician so desired for me. Two decades later when I unexpectedly hospitalized in May of 2015, I left the hospital with increased chronic pain and nausea. My new doctor directed me to stop my iron tablets, stating they were contributing to my pain and I didn't need them anyway. Well, I did need them and I was referred to a hematologist for iron infusion therapy. My hematologist also advised me to switch from iron ferrous to iron gluconate, as the gluconate is easier on the stomach. Although I still have chronic stomach pain, it is reduced with the iron tablet switch. Why would I take iron tablets still if I'm getting iron infusion therapy? Why to prolong the time in between iron infusion treatments. It has helped, I required iron infusions every 3-4 months.

So why do we need to worry so much about iron? Not only does it have bothersome short term symptoms but there are also long term dangers if left untreated. Long term effects I didn't even know about until I started researching.

When we're anemic, our bodies are unable to produce the required amount of red blood cells we need to carry oxygen throughout our bodies to all our organs and body parts. These red blood cells also carry carbon dioxide out of your body to be exhaled. To create red blood cells, the body requires nutrients such as Folate and B-12. So it's important to have these levels checked as well.

Iron deficiency anemia is common for those missing the colon and/or part of the small intestine. Symptoms include:

• Fatigue
• Weakness
• Pale skin
• Irregular heartbeats
• Shortness of breath
• Dizziness or lightheadedness
• Chest pain
• Cold extremities
• Headache

As you can tell, anemia is not a picnic. When my iron levels are low, I experience extreme tiredness starting as early as 10 am after a full night's rest. I will have a generalized discomfort to my body, an achiness and restlessness. It's difficult for me to keep my eyes open and I become short of breath easily, I will feel my heart beating inside my chest. I am always cold so I don't notice a difference there. And I'm told that I'm more pale than usual.

What I didn't realize though about prolonged anemia, is that it can cause heart problems. Remember, that short term effect of an irregular heartbeat? Prolonged it can cause arrhythmia (rapid, irregular heartbeat) which can lead to an enlarged heart or heart failure as the heart is weakened by overworking to pump more blood than normal to compensate for a lack of oxygen in the blood. This can lead to other bothersome symptoms, additional serious medical conditions, and death.

Signs and symptoms of heart failure include

• Shortness of breath
• Fatigue
• Weakness
• Swelling
• Arrhythmia
• Persistent cough or wheezing with white or pink blood phlegm or mucus
• Increased urination
• Ascites
• Rapid weight gain from fluid retention
• Lack of appetite and nausea
• Difficulty concentrating

Additional serious medical conditions include:

• Kidney damage or failure
• Heart valve problems
• Liver damage

To help maintain proper iron levels, talk to your doctor about

• Diet changes for foods rich in Iron, Folate, Vitamins B-12 and C
• Supplements for Iron, Folate, Vitamins B-12 and C
• Iron Infusion Therapies
• Any other recommendations

If you have iron deficiency anemia, I promise getting treatment to properly manage your iron levels will make you feel tremendously better. As much as I hate needles, I love my iron infusions.

A Look at Caregiving

This is a Guest Post by My Father

My daughter asked me to write about my experiences as a caregiver to herself and her mother. It made me contemplate for a while as I really don't consider myself a caregiver. In my heart, I am just a husband and father doing what those roles routinely require and the fact that my wife and daughter are chronically ill is just another dimension to my husband and father roles.


Cambridge Dictionary defines a caregiver as "someone who provides for the needs of people who are ill or can't provide for their own needs". So, okay, I guess I am a caregiver even though I consider my role more of that as a husband and parent. I don't consider providing health related service to my family any different than changing diapers for my daughter when she was a baby, it's just one of those things you do. My wife is fond of saying "You do what you need to do".


I also provide service for my wife and daughter beyond their illnesses wherever they need support. For example, my wife required a new car battery. I completed the task at hand as she was in need of assistance and she has a weight lifting restriction. I tend to categorize my service as things that need to be provided because I am the best source not because of their chronic illnesses. I complete certain tasks that are beyond their individual skills or abilities, it is more than I expect them to do. They are health related although I didn't consider the health portion in my willingness to complete such tasks.


A lot of routine husband and parent duties are health related but a lot are just duties that aren't necessarily required because of chronic illness and others cross categories. I complete required maintenance of our homes as well as medically required tasks such as my wife's daily eye drops, transportation to medical procedures, or picking up prescriptions. My daughter was on TPN for a while during her high school years and my wife and I were both taught how to provide care for her central line and feedings. It became a priority item in the daily routine and we tried to make it a fun activity and family bonding time rather than a time of an unwelcomed dreaded chore.


When we first realized that my wife would be facing a life time of health issues related to her Familial Polyposis and Type II Diabetes diagnoses there was concern on my part about the amount of daily time this would require of myself. In retrospect, it hasn't been much different as the extra work involved became part of being an actively involved family member. There are always things that need to be accomplished on a daily basis and the health related items fit into normal daily activities quite well. It's all part of being an active family member.


Chronic illness is a day by day process that can bring a lot of frustration, anger, depression, and angst for the patient and the family. Being the regularly healthy one in our family trio means that I need to just be a stable, dependable source for the needs that arise on any given day. It may be a comforting hug, a kind and supportive word, a ride to the ER, or taking out the trash and preparing a meal. Because my health is stable, I can provide such services as a caregiver with little burden or difficulty.

An attitude of welcoming the opportunity to serve rather than resentment of each chore is an essential ingredient in creating a healthy, mutually respectful and loving relationship between caregiver and recipient. Using the time to strengthen bonds, deepen the relationship and draw closer together instead of letting it draw apart and create barriers. Chronic illness is generally no one's fault, it just is; it's something to learn to live with as best as you can regardless of your role. We live day to day, appreciating the good days that are available to us. Being supportive, encouraging, willing and happy to serve, being a support that can be depended upon regardless of the time or day. Instead of considering the extra health related duties as unwanted chores, consider them an opportunity to serve a loved one and perform that service with humility allowing it to be a time of comradeship and an enriching quality time.


Being helpless to improve the situation, feeling guilty as the healthy individual and they aren't, being stretched and stressed can be a daily issue for a caregiver. Utilizing those healthier times to enjoy life together helps to relax and unwind, to reflect and re-group for one's physical and mental well-being is important. Being thankful daily for where you are at this time and place is a good way to quantify the caregiving role and the rewards that are received in performing service to others. Because at the end of the day, as my daughter reminds me with her request for this article: I am a caregiver and I'm honored to have such a role.

False Hope

With the changes to my health over the last two years, I can't help but believe that this is the healthiest I will be. Actually, in truth, I believe my healthiest days are behind me and this is my new level of healthy - a step down from where I was and therefore everything else that is to follow will only be worse.

All in all to try to fix the problem of my declining health over the last two years, I've endured 3 upper scopes, 1 lower scope, CT scan, labs including stool specimen testing. And although things have been ruled out as culprits and some culprits have been found, the underlying issues remain - I have chronic nausea and pain. And perhaps this is all primarily from the adhesions as my doctor diagnosed last year. Even if this is the case, the fact then remains that it will worsen as the adhesions continue to worsen and surgery for adhesion removal is inevitable - and so are risks that come with such surgery.

I lived with an ileostomy for six years before I was finally able to have my ostomy reversed with a straight pull through. Reversal wasn't a guarantee for me and whenever there is a surgery involving my remaining intestine, there will be risk of another ileostomy - only truly permanent this time.

This is my fear for the future. Although better equipped to adjust and accept an ostomy now versus when I was a teenager, I still do not prefer an ostomy. With all the problems that my straight pull through has with the development of short bowel syndrome, I still do not regret my decision for reversal and I want to maintain my reversal.
And to further complicate my health, I was recently diagnosed with Acquired Polycystic Kidney Disease. I don't have a family history of Polycystic Kidney Disease and haven't undergone genetic testing for the gene so it is assumed that it is a sponatenous manifestation within me. My nephrologist advised I have an estimated 20 years before I start to experience kidney issues, which at that time it will be likely that my kidneys will start to fail from an abundance of renal cysts and will require kidney transplant or dialysis if I want to continue living. My nephrologist advised that due to my Familial Polyposis, I am greater risk of cysts and cancer occurring. And so I will be monitored once a year with a CT Scan to monitor for cysts and tumors on my kidneys. As long as I can stave off my GI issues from worsening, I have an estimated 20 years of health remaining before I will begin to experience another change in health.

I struggle with this reality and with the present. I'm told to not give up hope for improvement of my symptoms. But at some point, false hope can be dangerous. I want my health to improve and perhaps it will but the odds are, this is it for now. I'm remaining open to trying a few more things but I'm trying to balance myself between positive hope and false hope. I've learned that when we cling to false hope, we are hit hard with a different reality. A reality that we could have been better prepared for if we had accepted the chance that exists for what we fear.

When I'm Asked How I'm Doing

When you have a chronic illness, sometimes it's hard to know how to answer when asked how you're doing. The odds are, we're not doing very well. We have daily symptoms we're contending with and most of the time we don't feel well but we don't want to admit that to others. We question the sincerity of the question and what is considered to be too much information when we answer. So we lie usually instead of answering the truth - the truth being that we aren't doing well.

I always question does someone really want the truth or just the brief, expected answer so that conversation can move along. I rarely answer honestly. I entered the habit of answering "okay" or "good" even though it was a lie. I was tolerating the moment even though internally, I felt like death warmed over.

I became tired of answering with a lie and a superficial glancing over my daily health. I wanted a more sincere answer but I also didn't want to dwell on the answer, particularly if my well being is only being sought after on a superficial level, out of societal nicities. I hate the looks of pity when I answer with a truthful "I'm doing horrible" type of answer.

I tried out different answers that felt genuine for me but none felt right. To say I'm functioning is true but it invites additional questioning and feelings of pity I thought. I'm alive didn't work well either for me. I finally settled on "I'm hanging in".

I'm hanging in provides a truthful answer without the invite for pity from others. It allows for further conversation but doesn't require additional questioning. It's clear and to the point - I'm managing but I could be doing better but I'm not worse either.

How do you answer others when asked how you're doing? What have you found works best for you? Share with me.