Thursday, September 12, 2019

No, My Food Choices Aren't The Problem

food choices

I have a long history of chronic pain caused by eating and no, it isn't my food choices that are the culprit. I appreciate others being concerned about my well-being but unsought advice gets to be tiresome, particularly when I've been dealing with my health issues since I was 9 and the particular issue of pain when I eat since I was 15. I think I have a good understanding of my own health issues and symptoms.

A lot of people are quick to tell me "It's what you ate", "You shouldn't eat so much" or "You have an allergy, try this diet". I have been tested for food allergies and intolerances, they were all negative. And the pain happens with everything I eat and even a gulp of water is enough to cause excruciating pain and stomach cramps at times. The only things that sometimes don't cause me pain are saltines and Arby's Roast Beef Sandwiches and even then I'm sure if I ate enough of them, they would cause pain too. Sure, over eating causes me pain but the pain is just worsened by quantity. Even small meals or snacks cause me pain and discomfort. Reducing my intake of filling foods such as pasta, rice, and bread do help to reduce my pain but I still have pain regardless. I have some level of discomfort with everything I eat - it just varies on severity. And there are times that I can eat something and have one level of pain and eat it again the next day and the pain level is something different.

I started experiencing excruciating pain every time I ate after I had my ostomy reversed via a straight pull thru. I required another surgery within a year to remove adhesions that were causing a stricture of my small intestine. It took several years after this last surgery in 2002 before my body was better able to tolerate food. The pain never fully went away although it did significantly lessen - that is until 2015. With my hospitalization in 2015, I started having chronic pain and nausea when I eat and the nausea occurs sporadically throughout the day and night as well. Additionally, my adhesions now cause me a higher risk of intestinal blockage and now I'm unable to eat raw or undercooked vegetables or I will have a blockage. This makes it harder to eat light, healthy foods in an attempt to further reduce my pain.

Since 2015, I've undergone various procedures and tests and the conclusion is that my chronic pain and nausea are a result of my adhesions worsening again. They're just not to the point of requiring surgery. During a period of testing in 2017, it was discovered that I had C-Diff and that was the cause of worsening my GI symptoms as my stomach and intestine were inflamed and irritated from the infection that was wreaking havoc on my body. I remember during this time I was being told by others to "try this diet, you have food allergies". I held off from trying the diets these individuals suggested because I wanted to give all the testing I was completing a chance to identify a source and for treatments to be tried before I changed my diet. I'm glad I didn't jump on the diet bandwagon as it turned out my weight loss and severe pain was actually due to the infection I didn't realize I had.

I'm glad to hear that certain diets have really helped others and I wish everyone the best of luck but a diet isn't always the answer for everyone's health issues. It certainly isn't the answer for my symptoms.

Tuesday, August 20, 2019

Why I'm Grateful I Didn't Become a Mother

For the majority of my life I planned on having a child and I was going to do what was necessary to have a child and end the cycle of Familial Adenomatous Polyposis (FAP) in my family with me so that I wouldn't pass it on to my child. I had a surrogate ready and willing and we were saving for the IVF that would be necessary as well as the egg selection to prohibit utilizing my eggs that had the FAP gene. However, I never felt quite ready to take the plunge and start the IVF process. The timing seemed off but the longer I procrastinated, the older I, my husband and my surrogate became nearing the age that pregnancy may not be recommended. I also was heavily concerned with the risk of pregnancy complications to my surrogate and if necessary, how the restrictive abortion laws of our state would affect her if she required to terminate the pregnancy in order to protect her health and life. I couldn't bear the thought of being the cause of harm or death to her when she was doing me a favor by agreeing to be my surrogate. After a lot of deliberation, I came to the conclusion that it would be better that we forego attempting to have a child and so I said goodbye to that dream. It was a heart wrenching decision that took a long time to fully process and accept. It was a difficult decision but I knew in my heart, it was the right decision for me.

And then a year later, my life changed and I was divorced. I not only was grieving the loss of my marriage but I was also re-grieving the loss of my dream to have a child. Even though I had decided to forego becoming a mother, with the divorce I was forced to fully let go of that dream unless something once again drastically changed in my life. If I were to become a mother, I would either have to make the conscious decision to attempt IVF with a donor or another life partner, adopt a child, or become attached to a life partner who already had a child.

In spite of all my dreams to become a mother, I am grateful that I am not a mother though. Deciding to become a single mother would not be an easy task and not one that I could easily financially afford either.  It would be a difficult life on my own as a single mother, financially and physically, and I still would face the struggles of living with chronic illness and caring for a child as before but now I would be on my own doing so. Finding a life partner with a child already is a real possibility as it is hard to find someone around my age who doesn't have a child or children.

I've also become accustomed to my life as it is and as much as I previously wanted a child, I don't feel as though I'm missing out. I'm still able to enjoy the company of the children who are in my life and I'm able to do so without the stress and financial burden of raising a child. It is a well working system actually. I'm able to engage these children in fun and exciting activities when I'm able to do so and if I'm sick that day, I simply need to tell their parents so. I've also been blessed with these children being understanding and supportive when I am feeling ill.

The decision to not have a child is not necessarily an easy decision and it takes time to process. It was a long road to travel but ultimately I am content with my decisions and where my life is now. It has been helpful in my acceptance to acknowledge the realities of the struggles I would be presented with in my situation as well as the good things that make up my life. I've discovered it is possible to live happily childless even though that was not my initial plan. I have made peace with my life decisions and it has helped me to appreciate my life just how it is.

Monday, August 5, 2019

A Tribute to My Ex Husband

what I want you to know about my ex

I don't regret my decision to divorce my now ex husband even though I wish our marriage had worked. But sometimes there is pain we can't overcome or it's not in our best interest to remain in a particular relationship. That was sadly the case for my marriage but I remain grateful for him. Too often we focus on our heartache and pain, forgetting what was good and what remains positive in spite of it all. Today I want to give credit where credit is due.

He is a kind man with an astounding heart. He is always there for a friend or family member in need. He works hard and cares about those around him. He was everything I was looking for in a partner. He did his best to always give me what I wanted or needed in our relationship. He listened to me and supported me, he provided me care when I was ill.

My ex husband and I are not friends, per say. I don't know what we are exactly. But I do know that if I need him, he's always there for me - from our 1st date to years after our divorce. We made a promise to each other when we separated that we would remain there for one another and he has kept his promise thus far.

Us with Zia and Ruhle
When we were together, we adopted two dogs - Ruhle and Zia. We loved them both dearly and they were extremely attached to both of us. When we separated, I took the dogs with me. I think he realized how much I needed them or maybe he's just that kind of a person. A couple months ago, our 1st dog to adopt together, Ruhle, suddenly passed away while staying with my ex husband while I was on vacation. He took care of everything for me with Ruhle's passing and we mourned together. Since then, I've adopted another dog to keep Zia company. They unexpectedly escaped my yard recently and I called my ex husband to let him know. I didn't expect him to do anything but I wanted to him particularly know about Zia missing. He was willing to drop everything at work and come help me find the dogs. Thankfully, they came home eventually.

He does more than just help me with the dogs too. If I need help with a home project, he will take care of it for me if I ask him. He works long hours but if I need him, he's there - whatever it may be, even if I just need to talk. He's always been like that.

I always say it's a shame what happened to our marriage. He was loyal and loved me deeply. He gave me everything I wanted and he was everything I wanted in a life partner. We were a perfect match. Like any couple, we both did things to hurt each other that we regret but we loved each other with all our hearts. Unfortunately, he made some life decisions that broke my trust and I couldn't recover from it. But I will always give him credit for all the good that he embodies. I have forgiven him and am not bitter toward him. He remains near perfect in my eyes. He is a good person and in spite of our divorce, I can't imagine my life without him in it in one way or another. We may never be friends again but we'll always be there for one another.

Monday, July 22, 2019

Reviewing FAP Monitoring and Testing Results

Currently my GI doctor completes upper and lower scopes of my GI tract to monitor my Familial Adenomatous Polyposis (FAP) every two years. In 2015, I started developing duodenal polyps that were precancerous adenoma polyps caused by my FAP and fundic gland polyps in my stomach. I have an intestinal ulcer above my reversal connection site in my small intestine as well that requires monitoring.

Duodenal polyps are a particular concern for those with FAP as FAP polyps often continue to reoccur in spite of removal. I was ecstatic to hear that there were no duodenal polyps present during this scope. These polyps are precancerous and will turn cancerous eventually. The duodenum area for polyp development is concerning due to the risk of requiring a Whipple procedure. No one wants this high risk surgery that results in the removal of the head of the pancreas, the duodenum, gall bladder and the bile duct. My mother required this surgery and it was a very long, difficult recovery for her that nearly cost her life in return and led to the development of diabetes. Additionally, abdominal surgery such as the Whipple, increases the risk of developing a Desmoid Tumor - which FAP patients are already at a higher risk for Desmoids.

I have had several sessile, fundic gland polyps for a few years now. There are several and they are small and in the upper portion of the stomach and are usually benign. However, according to Mayo Clinic, when fundic gland polyps are associated with FAP, they can become cancerous. Sessile polyps are flat, broad based and also considered to be precancerous. Stomach polyps can also cause symptoms of nausea, tenderness, anemia, and blood in stools. These polyps may very well play a contributing factor to my chronic nausea that I started experiencing in 2015. The use of Proton Pump Inhibitors to reduce stomach acid also increases the risk of developing these polyps. I require Prilosec to help reduce my acid reflux and it also seems to help my intestinal ulcer.

I asked my GI specialist if I should change to a different stomach acid controlling medication to further help heal my intestinal ulcer. He advised me that medications, such as Prilosec, focus primarily on the stomach acid and don't really treat intestinal ulcers. My ulcers decreased from 4 to 1 since taking Prilosec yet I'm unable to fully heal my remaining ulcer. This is particularly a concern for me as my ulcer created a hole in my intestine when I was in high school. I went several years later without taking any medication for the stomach acid and without the medicine my one stable ulcer developed into 4 bleeding ulcers. I have to be mindful of my ulcer as it often bleeds to this day, especially when I take Lonox/Lomotil to slow my bowel or if I do not use the restroom for long periods of time. My ulcer actually bleeds less if I use the restroom frequently. My doctor said for an intestinal ulcer that is near the anus, then a suppository or an enema can be used to help treat the ulcer. I am not able to tolerate anything inserted into my anus and therefore this was not an option I could entertain. After my scope was completed, my doctor advised that these would not be a viable option for me regardless as the ulcer is higher in my intestine, above my connection site than he previously realized and it is too high up to be able to be treated with such methods.

Overall my scope results were positive - no duodenal polyps this time, my fundic gland polyps that were biopsied were benign, and my ulcer was stable and also tested negative for Crohn's Disease and cancer.

I go back for a regular check up in 6 months and I will continue my efforts to maintain my health as I await my next set of scopes.

Monday, July 8, 2019

Birthday Struggles

birthday balloons girl running

My birthday is a bit of an emotional roller coaster at times for me and has become increasingly difficult for me to enjoy as the years pass by. I shared earlier this year about how my birthday and New Year's start a period of mourning as my fears about the future are intensified. Over time, birthdays have changed from a triumph of survival to a period of mourning.

Often individuals enjoy taking off from work on their birthdays as a way to celebrate. I prefer to work on my birthday so that I can be surrounded by coworkers and celebrate with them versus being home alone on my birthday. This got me thinking and I realized that even as a child, I felt that my birthday wasn't anything special - it was insignificant - which led me to feel that I too was insignificant. I didn't deserve anything significant to occur on my birthday and it was significant when someone remembered to wish me a happy birthday. As the mourning of my birthday years worsens with time, I particularly do not want to be home alone allowing myself to wallow in my mourning.

Since I entered a brief period of depression surrounding my birthday last year, I expected the same to occur this year. I was pleasantly surprised with myself when this didn't occur - at least to the depth of last year's birthday. I struggled in the morning with feelings of sadness and even welled up with tears at times but I was able to fight off the tears and turn the day around by the afternoon. I pushed away my fears about the uncertainty of the future and instead I enjoyed my the birthday lunch my coworkers provided me and appreciated all the birthday wishes from loved ones and even strangers online. I thought I would be in an emotionally fragile state once I got home and asked a friend to spend some time with me. But once again, I surprised myself and was comfortable in my alone time.

Although the sadness I tend to experience around my birthday lessened significantly, I also didn't experience a surge of triumphant feelings about survival either. And that's okay. I was content with a lessening in sadness allowing me to more greatly enjoy sharing my birthday with my loved ones.

Whatever holidays serve has painful reminders to you, may the next be easier. Sometimes our fears and mourning never fully dissipate but they can lessen and we can still enjoy the good times, particularly with others. It can help to utilize coping tools to reframe our negative thoughts to allow us a reprieve.

Here's to an even better birthday next year.