Ending the Family Cycle

At last my GI doctor appointment, my doctor gave me a study to read about colon cancer in families, who is at elevated risk and it also included FAP. It was an interesting read and I urge you to also read it when you get a chance. Preferably after you've finished reading this post ;)

The study reminded me of my own desperate need to stop this familial cycle so that I may be the last one in my family with FAP. In a Medical Angels and Demons, I discussed my gynecologist who performed the Essure sterilization procedure for me so that I may not have to worry about passing on FAP. I respect that this choice is not for everyone. For me it was though. I've seen what FAP is capable of with my grandfather, mother and myself. Others in my family have also been affected by FAP and colon cancer. I've seen the horrors and I don't want to risk that for a child of my own. My mother was diagnosed with FAP and colorectal cancer before I was even 3 months old. At 3 months, I almost lost my mother because of the FAP and cancer. I don't know if my mother would have taken the chance of passing on FAP had she known that she also had FAP and how it would affect her and me. My grandfather had already battled colon cancer prior to this and he would again battle the cancer causing FAP as I neared adulthood. After my diagnosis and surgeries in grade school, I became enraged and depressed. I blamed my mother for all the medical misfortune I experienced. Afterall, she was the one to give me FAP so in my darkened mind, it was her fault. I blamed her and my doctors for years. I was consumed by hate and despair and wanted nothing but revenge. It took me several years to accept what happened to me and to realize that it wasn't my mother's fault. It was a very tough time for her, to watch her child suffer mentally and physically because of the FAP and what it's capabilities.
That 50% chance is too great for me. In my family, the FAP polyps have increased earlier in age with each generation. That isn't to say that it would for my own child, but it's not something I wish to discover. And in the study I referred to earlier, colon cancer is still an elevated risk for first degree relatives even when it was diagnosed over the age of 60! Colon cancer isn't slowing down and I've seen enough of it.

The risk of pregnancy and childbirth for myself is also far too great. In Medical Angels and Demons, I also discussed why pregnancy and childbirth is dangerous for me. Even as a child, I  knew that pregnancy wasn't right for me. Although I didn't fully understand pregnancy and childbirth at that age, I knew it wasn't the right choice for me and it seems as if everything that has happened to me in life has helped to ensure that it would be difficult to even attempt pregnancy. And I'm absolutely fine with that!

But just because I don't want to risk having my own child with FAP doesn't mean that I'm stopping there. Because I would really like to have my own child, just not with FAP. I've researched IVF studies and have come across successful cases of individuals using IVF to only utilize eggs without FAP. Unless something changes, I have a surrogate on the wings who has agreed to undergo IVF with the fertilized egg of myself and my husband so that we may have a chance of a child. Even then it may not work due to the inability to have a guaranteed full term pregnancy and childbirth, but this is a risk I'm willing to take. There isn't any other option in my mind in order to have a biological child without FAP. We've located a fertility clinic that we're hopeful about and after harvesting eggs, we're given 6 attempts at IVF. We'll have one shot at this, and if it still doesn't work then fate has spoken. My husband and I have discussed adoption as an alternative if the IVF is unsuccessful but at this point we don't feel like it's the best choice for us. That may change though and we're open to revisiting adoption.

Right now, IVF is our plan and as hopeful as we are about it's success we know that it may only be hopes. This has been the long time plan of mine and fortunately I married someone who is on board with it. As the time approaches for us to start the IVF process, the further I'm conflicted between hopefulness and fear. I don't want to plan too much or become too hopeful as the spiral downward if those hopes are dashed would be devastating. In an effort to protect myself, at least some, I focus on the improbability of IVF working for us and I try to not think of a future with a child so that if IVF is successful with a pregnancy, then I can enjoy planning for a child's life and future. There are so many things I'd love to experience with a child, so many things I'd like to do for a child. I'd love to plan vacations, educational activities, birthday parties for a child. But until then, if I let myself escape in a bubble of hope in these fantasies, I may just be own worse torturer. And so I wait, we wait, and hope.

Should it not work out as planned, we will accept the decisions we've made and with the help of counseling move forward. It is all too great of a risk for me to allow a child of mine to live with and endure a life of FAP. Again, let me reiterate that this decision is not for everyone and I whole heartedly respect anyone else's decisions regarding their family planning without judgment.

Surreal

It's been so long ago, the medical tests and procedures, the surgeries and the struggle for life. It's been a lifetime ago but it doesn't always seem like my life. I have to remind myself that it was my life and not someone else's life. I feel like I'm looking through a looking glass, peering into someone else's memories and past. Not my own. And yet it is mine. Every horrible moment, every joyous cause. It's all mine.

I never thought the terror and the battles would fade so much. They don't occupy my mind all the time anymore. I remember everyday but it's just in passing. When my stomach rumbles, when I have to run to the bathroom, when I'm sore. But it's only brief reminders. Even when I have flare ups,  it's just for a night and I can forget the next day. No more constant reminders and complete worry about what I'm eating or what I'm doing. I still feel concerned but it doesn't consume me anymore. How has this change happened?? I've become so far removed from it all. I have my regular check up every three months but I don't have anymore medical tests or procedures. Not even routine. I should have an annual scope but I haven't in 5 years. My doctor knows I'm not budging on this one, I'm not going through the torture of laxatives and enemas. Find another way, I'm not doing it. That's how. I haven't had to go through pain and torture in five years except for flare ups and 1 CT Scan with dye. I'm not being forced to relive the nightmares. I've been granted a pardon, even if only for a short while.

I have to make myself remember the details of those awful years of pain and struggle. It doesn't seem possible that it all happened to me. That it was me going through it all. I swear it happened to someone else, not me. Why are people worried about my health? I'm fine, that wasn't me. But it was. It was me. And they remember. They remember the countless hospital stays and trips. The never ending medical tests and procedures. The need for another surgery. The fear and worry in the doctor's face, the nurses, the surgeons, the team of specialists. The terror I expressed, my screams and cries. My pleas for it to end, to let me die. They remember.

Once I'm thrown back into the medical den it will come flooding back and I'll be consumed again. But for now, for now I've been given mercy.

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.

Stress Effects

This last week has been very stressful work wise, 5 days felt like 2 weeks! And I could tell it was starting to wear on me physically. There's always those telltale signs warning you of impending danger if immediate action isn't taken. And I was starting become leery of those alarms.

The first couple nights of the week I was so exhausted that I slept through the whole night. This may be the norm for some, but it isn't for me. I'm usually up 2-3 times a night to use the restroom so if I'm sleeping through those bodily alarms, I know I'm needing the sleep. Well the last couple nights of the week I changed the routine and started having stress dreams, so I wasn't getting much sleep at all. When I wasn't in a deep sleep, I was dozing with stress dreams. This is also a dangerous pattern as there isn't any rest or recuperation obtainable in such a state.

My lip became tender and I just knew my body was about to explode with it's own rebellion against stress in the form of fever blisters. Throughout childhood and until the end of the collegiate career, I was a fever blister queen. Anytime my immune system became threatened, I had at least one giant, painful, eye sore of a fever blister. And most of the time I had 2-3 of them, even to the point that for a period I even developed impetigo - blisters on the skin that break open and become crusty. I've had fever blisters and impetigo so severe that the skin around my bottom lip is scarred. My GI doctor said that I'd likely outgrow these fever blisters and she was right, I have a fever blister maybe one or two times a year now. But even so, I remain leery of this ticking time bomb.

Because of the stress, I started to notice some depressive symptoms as well. I started to become withdrawn and saddened. I started to have meltdowns at work and home, moments where I couldn't hold back the tears. All I wanted to do was stay in bed and cry but I knew that I needed to force myself to talk to others or I'd easily get sucked into the deep spiral of depression. The emotional and physical sides of health are linked, they affect one another. So anytime one is in danger, so is the other. It's important to balance both for one's own well-being.

I also tend to stress eat, I want to eat anything or everything and this leads to overeating which upsets my digestive system. I felt miserable - bloating and SBS are not wonderful symptoms nor are they when combined.

These were the loudest alarms and I knew if I didn't get a handle on this stress, my body was going to rebel further. In the past, under extreme stress my intestine rebelled by constant SBS flare ups to the point that functioning was nearly impossible. I'm terrified of this happening again as I wouldn't be able to maintain employment in such a state.
I started to let others in, sometimes it's hard to accept help from others. I'm an independent worker and I usually figure there isn't much someone else can help me with - that it's not going to save time or effort. I leaned on friends and made a bit of time for a mental break - such as tagging along on a lunch run just for the change of scenery for 10 minutes. I used some free drink coupons and got a special treat to help me through the day. One evening I vegged out and just watched television with my husband and cooked a healthy meal. I quit beating myself up over things out of my control and started giving myself pep talks. So today, I feel better. I feel ready to be let back into the ring for another fight tomorrow. Here's to hoping this week is better too!

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.