A New Direction: Redefining Life With Chronic Pain

Redefining My Life With Chronic Pain

As I have mentioned 2014 has not been off to the greatest start and honestly I feel like I have spent most of my time passed back and forth between my doctors with one saying the other was the problem. The pelvic specialist thought that my Celiac was the problem. My GI thought that scar tissue was the problem. My pain specialist just thinks I am falling apart. Needless to say I have struggled staying positive and often wondered if I was just a lost cause and if chronic pain would continue to define my days.

Last week I had an appointment with my primary doctor so we could just lay everything out on the table and come up with a plan. We were able to look at all of the test results and procedure results along with my history. She has been my doctor from the beginning so after almost 11 years, she and I had quite a bit of history. I know that God had designed for our paths to meet as He knew the type of support I would need for my journey. As a scared college kid, I sat in the office of the new doctor who had just come to town. Coincidence? I think not. Within three months of my initial exam, I was diagnosed and began treatment for endometriosis (some women have to suffer for years before nailing down the diagnosis). In all of the time since then she has never once made me feel like I was crazy. Never once has she doubted or brushed off my experience. Never once has she made me feel like I was just a number. Over the last 11 years, she has laughed with me and cried with me so when I felt like I was at the end of my nope, I knew that she could help pull me back in.

So last Thursday she and I along with my husband (and the NP student who just happened to be shadowing my doctor), we laid everything out. Surgery was definitely not an possibility because I am so high risk because of my history of adhesions and obstructions. At this point surgery would only be an option in an emergency (like another total bowel obstruction). I felt relieved (as I still have nightmares about my last surgery) and overwhelmed (as I wasn’t sure what other options we had).

We decided that the next step should be getting a second opinion from a pain specialist. If you have read my blog for awhile, you may have noticed that I am not too fond of my current pain specialist (and I happened to find out that the other doctors in the area aren’t fond of him either) but being in a small town and knowing all of the restrictions involved in seeing a pain specialist, I was too worried that attempting to find a new one would cause problems (such as looking like I was shopping for prescriptions).

With the assurance of my doctor, we knew that the time had come to get a second option. My current specialist only wants to treat the pain with medication and honestly at this point, we aren’t sure if they are helping or hurting so it is time to explore new options (such as a nerve stimulator).

While it may not look like we made great strides in that appointment, I feel very positive about the direction we are taking and more confident that I will not have to continue to live with this amount of pain indefinitely. I feel like there is hope that I regain some type of normal for my life. Pain will no longer define my days and that feels awesome.

Fighting The Good Fight Against Chronic Illness

fighting-against-chronic-illness

April did not get off to a great start. The last time I updated, I was in the midst of a double bowel prep for my repeat colonoscopy. The double prep was absolutely miserable. I think every nook and cranny in my entire body had been cleansed. I was lucky enough to get a nurse who got my IV started on the first try and I was ready to go. The nurse who came to take me back to the procedure room remembered me from my last colonoscopy attempt (maybe my purple hair makes me memorable). The whole team taking care of my procedure were great. Because I struggle with extreme nausea after anesthesia, the anesthesiologist tried a different type of medication. Dr P came in the room and said “Let’s do this!” and the next thing I knew I was in recovery crying. I have no idea what I was crying. The nurse said it was from the type of sedation they used and for the record, I still woke up extremely nauseous. After asking for Zofran, I asked the nurse if they were able to complete the procedure and breathed a sigh of relief when she said yes (my worst fear was waking up and being told that it failed again).

Dr P stopped by my room before I was discharged and gave me a heads up on how the colonoscopy went. They removed a polyp from my colon that was the same type of polyp they removed from my stomach during my EGD in February (called an adenoma). There were no signs of colitis and the junction where my bowel was resected looking good so outside of the polyp, the inside of my bowel looked healthy and unless something comes up, I won’t need another colonoscopy for 5 years! Hallelujah! I will need a repeat EGD next year but those are a breeze in comparison.

The most important thing discovered during the colonoscopy was scar tissue. Dr P said he had a very difficult time navigating because my bowel wasn’t as mobile as it should be and seemed to be fixed in place. The scarring is likely a main culprit of my abdominal/pelvic pain and pain with bowel movements. I am glad my colonoscopy occurred before my appointment with the surgeon as I knew this would be helpful information.

Two days later, my husband and I went back to Charlotte to see the surgeon. Just a brief recap of my endometriosis-specific ultrasound, they did not see any large implants but small implants or scar tissue are not visible on ultrasound. After reviewing the results, one of two things would happen. If they thought that surgery would be the best avenue to explore, they would set me up to see Dr S. If they thought that another type of treatment would be a better option, I would see Dr M.

The office called and set up an appointment for me to see Dr S. Because of our prior discussion, I assumed that seeing Dr S meant moving towards surgery and knowing about the scar tissue discovering during the colonoscopy as well as the crippling pelvic pain, I thought that it might be a really good option to look into.

I was wrong. That’s what I get for assuming, right?

Basically the point of the appointment was to tell me that I am not a candidate for surgery because I am too high risk due to my history of scar tissue and obstructions. I totally understand wanting to avoid the cycle of surgery to remove scarring which in turn means more scarring and then more surgery, etc. I totally get it. I am glad that I have doctors that aren’t scalpel happy but when do you get to the point where the benefits outweigh the risks?

One thing that Dr S wanted to check was my hormone levels because of my history of recurring endometriosis after a total hysterectomy. He said that my FSH level could indicate if any ovarian remnants were producing enough estrogen to fuel the endo. However, even if they found that any pieces were left behind, they still would not do surgery but would instead prescribe a estrogen suppressing drug like Lupron. I told him that hell would have to freeze over before taking that drug again. He was not amused.

The cherry on top of this fantastic appointment (cue sarcasm) was his comment that the source of my problem could come from having too many fat cells. Now I was the one who was not amused. He swore that he would have made the same comment if I had walked in at 100 lbs but you don’t tell a woman that she’s too fat and not expect her to be hurt and/or give you the death ray stare.

To summarize the appointment: 1) they will only do surgery when the scar tissue completely shuts down bowel function (cue bowel obstruction nightmares); and 2) I still dislike male gynecologists (would you go to a mechanic that never owned a car?).

Once again, I’m not sure if I had just built everything up so much in my mind that it wasn’t realistic or something else but I left feeling like I was no better off than where I started. In some aspects, I feel like I have taken a step back. I wanted to just crawl in a hole and hide out for a long, long time. I felt such a wide range of emotions that it took me some time to process hence why I didn’t update sooner. I have felt angry, defeated, hurt, depressed, anxious and betrayed.

I’m not sure if there is any worse feeling when facing a chronic illness than that of feeling like your pain and struggles aren’t validated. Out of the whole experience that is what hurt the most. So I let myself cry a little bit and grieve a little bit but I reminded myself that the fight is not over. That particular battle might have felt like a loss but there are many fights to come and I will overcome. I will be strengthened knowing that my God is a Warrior and that I am not fighting alone. I will be strengthened by the unfailing love and support of my amazing husband.I will be strengthened by the smiles and songs of my beautiful daughter. I will be strengthened by every word of hope and encouragement that I receive from every comment, every email, and message that I receive from all of you reading this.

Words cannot express how deeply my heart is touched by this community of beautiful and strong women (and if there are any guys that may pop in from time to time).  When I was asked how blogging has impacted my journey with chronic illness, I couldn’t stress enough how being a part of a community has helped me push through and keep fighting. So thank you from the bottom of my heart.

I am ready to keep fighting the good fight against chronic illness! Are you in?